Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Chronic diarrhea can also be a sign of food allergies. Benny's dad when he was a baby had it for 9 straight months and was failing to thrive. I had to remove all cereals and potatoes from his diet, the only carbohydrate he could use was from plantain (starchy tropical bananas). He was also having ear infections, serous otitis and speech delay during that time. One little bit of cookie would cause this so we couldn't put him in day care, either. We hired a mother with a baby with cleft palate to come into our house and care for both babies. He outgrew it and now apparently has only " lactose intolerance " (self-diagnosed). He avoids milk and ice cream, etc. but I think he can eat cheese OK. Peace, Kathy E. On Feb 10, 2004, at 7:11 AM, wrote: > We also experienced loose stools and still sometimes do, my son is off > dairy and has very little fruit juice, we've tried accupressure and > herbs and nothng works, I dont' know how I will be able to potty train > him??? > Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Back in 1997 when my son was 15 months old he had a history of feeding problems and facial rashes. From birth my son continually had loose bowels and always sounded congested. Allergists found contradicting results so I went further and had his blood work done through Doctors Data and Great Smokies lab. This was done through a nutritionist and registered nurse who worked with a DAN practitioner. The results were high copper, low zinc, chymotrypsin was elevated, fat malabsorption, hidden blood found in bowel, " friendly bacteria " was low, citrobacter freundii was well-established, bacterial dysbiosis index severely elevated. The plan of attack was to start my son on digestive plant enzymes " Similase by Tyler " sprinkled on his food at each meal. Add Nutritionist's Choice multi given with meals, and 1 tbsp of flax oil per day. If skin did not improve, rub 1-2 capsules of evening primrose oil directly into his skin " Efamol " was the brand I used. I also was recommended to read the book " SuperImmunity for Kids " by Dr. Leo Galland M.D. At bath time I would add 1 cup of epsom salt, 1 cup of baking soda and 2 drops of lavender oil. This has relaxation as well as detoxifying properties. I purchased hypoallergenic cleaning and personal care products by Shaklee. Within 3 months my son had baby soft skin and relieved of congestion and loose bm. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi Delores, IMO I don't think its the SD...I think its simply your gut....you are doing all the right things IMO ...can you monitor what you eat...maybe you have developed an allergy to certain foods?Another Question....are you chewing everything in your mouth to liquid?? As the father of macrobiotics stated...something like no teeth in your stomach....so food that goes down in larger portions might permeate the intestines...leaky gut...I know it sounds simplistic...but sometimes we simply need to really chew our food to liquid, I know I have to make a conscious effort to slow down and reallllllly chew.... As for feeling thirsty often, that can be a sign of diabetes or in my case...Sjogrens...I use something called Oasis mouthwash and Oasis spray for that...it comes and goes... What the Prevacid and those others .....there has been studies about loss of bone etc...from their use as well as heart problems from their use... Hope this helps, Debb rheumatic Chronic Diarrhea Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative. But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma. I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often. I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also. Dolores Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi Ken & , Hi, that is the puzzling part about this. I have been to several gastroenterologists and had all the tests done numerous times. I had several endoscopies and colonoscopies. They remove a piece each time and send it to the lab for analysis. It always comes back negative. My infectious disease doc said it was the clindamycin doing it, so I went back on Minocin and D/c'd the clindy. But there was no change. I researched Chrohn's disease and all it says is chronic inflammation of the bowel and the only thing they offer is surgery for a resection. I don't want to end up with a colostomy if I can help it. It seems to have gotten worse these last few weeks. It was always intermittent, but now, I can't leave the house and at times I walk the floor all night. I haven't lost any weight as yet and I am not anemic, so I know that I am retaining or absorbing some nutrients. But, I would like to get a handle on it before it gets to that point and they have to feed me intravenously. I am now in Puerto Rico and the doc that gives me my scripts is just that, " A doc that writes scripts!!!! "   He knows very little English and nothing about scleroderma except for the FAQ sheet I printed up for him in spanish. I don't think anybody here knows what Scleroderma is. My question is, (Could this possibly be a late stage symptom of sclerodermas? I know the gut is inflammed, but is it from Scleroderma or something else. I want to hear from someone who has had Systemic Scleroderma who has gone into remission and then ended up with late stage Irritable Bowel Syndrome from scleroderma. I also am told that I am prone to getting colon cancer from the pathogens that cause scleroderma. The late stage anything when I have been doing so well is what is scaring the crap out of me. Literally!  I must take into account that the people who wrote the late stage thing, do not know about A/P or taking ABX's  To them anything about scleroderma is late stage anything. I just want to know if I can be in remission and still lose the battle. Dolores  From: Ken and <kglg@...> Subject: Re: rheumatic Chronic Diarrhea " rheumatic " <rheumatic > Date: Friday, July 2, 2010, 10:01 AM  Dolores, I'm sorry your experiencing these symptoms when otherwise you're feeling so well. Have you been tested for C. Difficile? My rheumatologist lectured me for 15 minutes on the phone before he agreed to prescribe clindamycin at the beginning of the AP. Should you be asking for a referral to an GI specialist to rule out things like colitis, Crohn's etc.? If it were me, I would be going to a doctor because you have been doing so well and don't want to start losing weight if the symptoms occur a few times every day. all the best with this, Dolores. I hope you get the solution quickly. rheumatic Chronic Diarrhea Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative. But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma. I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often. I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also. Dolores Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 You mentioned a couple of weeks ago, I believe, that you were quite stressed. Do you think that is contributing? I'm not sure if the timeline would coincide--I'm just suggesting this because stress can definitely disrupt the digestive tract and if yours is sensitive to begin with, I imagine the effect could be stronger. It is frustrating when you can't get any answers. Hopefully someone else can make some suggestions for you to follow up on. Perhaps Ethel could help? rheumatic Chronic Diarrhea Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative. But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma. I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often. I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also. Dolores Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi Deb, dear. Yes, I think you have something there about chewing. I have a tendency to eat fast and get it all down in a hurry. This comes from years of working in the hospital and not having a chance to finish lunch or even get to eat at all. I worked in the units and it was always super busy. We ate in bites, here and there and mostly chomped on garbage like the cakes and cookies the patient's families would bring in. They meant well, but that didn't replace proper nutrition. And, of course, we weren't forced to eat it. But we did because it was handy. I still eat like I have a train to catch. I am going to take your advice and stop to chew and chew and see if it helps. As far as being thirsty, I do have type 2 diabetes and I surmised that I am thirsty because I am losing so much fluids with each BM. My A1c's are good and the finger sticks are normal. I am trying to eat more proteins because I read that we lose mostly protein with diarrhea and I have a tendency to be deficient in protein normally anyway. The allergy part is also possible as I am lactose intolerant for years and do not eat dairy. Every now and then I have a sugar free ice cream and boy do I suffer for it. I think that may have started this episode as I remember having some ice cream about 5-6 days ago and shortly after that all hell broke loose. One of my docs did test me for Sjogrens and that was neg also. As far as the Prevacid goes, I take one only when my esphagus is on fire. I love spagetti, but the tomato turns my stomach into an inferno. I should know better.  That hasn't happened lately. If I take one Prevacid every two weeks, it is a lot. I am lucky, my bone density has been good for years. I do keep an eye on it. I will try to remember to chew and start out with mild easy to chew foods and see how it goes. Thank you so very much. Hope all you oldtimers I've grown to love through the years are all doing well and have a great 4th of July. Dolores       From: DEBBIE GIBSON <Debbullwinkle@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 9:01 AM  Hi Delores, IMO I don't think its the SD...I think its simply your gut....you are doing all the right things IMO ...can you monitor what you eat...maybe you have developed an allergy to certain foods?Another Question....are you chewing everything in your mouth to liquid?? As the father of macrobiotics stated...something like no teeth in your stomach....so food that goes down in larger portions might permeate the intestines...leaky gut...I know it sounds simplistic...but sometimes we simply need to really chew our food to liquid, I know I have to make a conscious effort to slow down and reallllllly chew.... As for feeling thirsty often, that can be a sign of diabetes or in my case...Sjogrens...I use something called Oasis mouthwash and Oasis spray for that...it comes and goes... What the Prevacid and those others .....there has been studies about loss of bone etc...from their use as well as heart problems from their use... Hope this helps, Debb rheumatic Chronic Diarrhea Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative. But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma. I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often. I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also. Dolores Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi , Yes, a couple of weeks ago, I did get upset. I was trying to help Amy out and received a lot of flack about that. But normally, I can handle those thing pretty well. I am also my 95 yr. old mom's care giver. She lives with us and has Alz's. Sometimes it is a battle just to get her bathed and have breakfast. So, often I start out my day already aggravated. If it weren't for Mike to give me a hand, my mom would probably be in a nursing home by now. We are trying to keep her in a home atmosphere as long as possible and only put her in a home if she becomes a danger to herself.  Gotta make the best of a bad situation. That may be me someday. ~~~Happy 4th~~~~Dolores   From: Ken and <kglg@...> Subject: Re: rheumatic Chronic Diarrhea " rheumatic " <rheumatic > Date: Friday, July 2, 2010, 10:01 AM Dolores, I'm sorry your experiencing these symptoms when otherwise you're feeling so well. Have you been tested for C. Difficile? My rheumatologist lectured me for 15 minutes on the phone before he agreed to prescribe clindamycin at the beginning of the AP. Should you be asking for a referral to an GI specialist to rule out things like colitis, Crohn's etc.? If it were me, I would be going to a doctor because you have been doing so well and don't want to start losing weight if the symptoms occur a few times every day. all the best with this, Dolores. I hope you get the solution quickly. rheumatic Chronic Diarrhea Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative. But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma. I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often. I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also. Dolores Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi Dolores, I wish I could offer something to you besides well wishes and that you get to the bottom of your situation quickly. I know everyone on our list will race to your cause as we all appreciate how you are there for us with each and every little problem. You were there for me last week. I know a lot about RA and that has been my focus. I'm certainly interested in all the other " ailments " our group has and is experiencing but re the knowledge part, not much on my part. Hopefully, you will get past this and it won't be anything but a minor issue. Happy 4th to you too Judy In a message dated 7/2/2010 4:52:35 A.M. Eastern Daylight Time, martysfolks2004@... writes: Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative. But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma. I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often. I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also. Dolores [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Dolores, I want to suggest a " far out " site for you to go to. I have been on two of these for quite some time and when Mother became so ill and we could not get rid of the daily diarrhea, I put her on one these and she is just going strong and no diarrhea since. Please go to www.ayurvedicbazaar.com and look up PRAAS brand CHYAWANPRASH (which Mother is on) along with the Gojiberry tonic which is she on. I am on the chyawanprash (praas brand) along with Bilva fruit powder whch is at the top listed under Fruits. I have never stopped my aloe vera during the many times I have been tempted because I buy the BEST of them and they are not cheap. The Chyawanprash is noted to be healing to the intestines. My daughter who suffered for years from several illnesses, two of them being bullemia and then anorexia, suffered from intestinal problems with her debilitated and unhealed stomach. She is now going strong on this. I don't know being just a lay person about your tests being negative and your still having this problem. My guess is that this is the damage left from this insidious disease we have had. It is like my having the heart surgery and the kidney extraction after my tests were negtive for years. I think it leaves just a brutal " fall out " which must be cleaned up. I think one of the greatest gifts which came over these many years of sckleroderma was my ability to have an open mnd to trying anything - and thus I found ayurveda. When my finances are a bit better, because of my age, I want to also get on the goji berry tonic but for now, it is good enough that I just have my Mother on it and she planted three trees last week for shade for her porch - going to turn 94 on Nov. 1 - after years of being weak and unable to do anything from the diarrhea and heart. This is the kind of return to health I wish for you. She had a few bladder spasms last week and was terribly annoyed by it because she felt too " Great " to put up with those. With the load you carry as a care giver, I would recommend all three of them to give you strength and get thadigestional tract functioning again so that you feel better. I will be interested in if you decide to try this and what you think. Over the years when I was sick, i would have diarrhea and then constipation. Now I am just normal. Normal is good and I send warm Normal wishes to you. rheumatic Chronic Diarrhea Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative. But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma. I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often. I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also. Dolores Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi Dolores, I'm sorry your stomach is not doing well. Short Answer: Try some Flagyl (metronidazole). Longer explanation: Stomach problems were one of the my very first complaints- years before I was diagnosed with polymyositis ( " end stage " by the time I was diagnosed). The best gastroenterologist in town could not fix my stomach despite endoscopies, etc. Now stomach problems are known to be a first sign of these illnesses; WebMD even lists dermatomyositis or scleroderma as a possible cause if you look up stomach pain. The minocin did nothing to help my stomach, despite massive improvement in my muscles etc. I tried probiotics, aloe, olive leaf extract, etc, and nothing ever got to the bottom of it. I added Flagyl to my regimen, and it finally fixed years of gastrointestinal complaints. Flagyl is an antibiotic that also treats intestinal protozoa like Giardia and Amebiasis. I definitely had an intestinal bug that needed its own treatment. Each of us have acquired our own mix of microbes over our lifetimes that have contributed to our disease state and specific symptoms. There isn't just one antibiotic for all- in my experience it tends to take a combination. Good luck- I hope you find the answer! On Fri, Jul 2, 2010 at 4:22 PM, <Sltfain@...> wrote: > > > Dolores, I want to suggest a " far out " site for you to go to. I have been > on two of these for quite some time and when Mother became so ill and we > could not get rid of the daily diarrhea, I put her on one these and she is > just going strong and no diarrhea since. Please go to > www.ayurvedicbazaar.com and look up PRAAS brand CHYAWANPRASH (which Mother > is on) along with the Gojiberry tonic which is she on. I am on the > chyawanprash (praas brand) along with Bilva fruit powder whch is at the top > listed under Fruits. I have never stopped my aloe vera during the many times > I have been tempted because I buy the BEST of them and they are not cheap. > The Chyawanprash is noted to be healing to the intestines. My daughter who > suffered for years from several illnesses, two of them being bullemia and > then anorexia, suffered from intestinal problems with her debilitated and > unhealed stomach. She is now going strong on this. I don't know being just a > lay person about your tests being negative and your still having this > problem. My guess is that this is the damage left from this insidious > disease we have had. It is like my having the heart surgery and the kidney > extraction after my tests were negtive for years. I think it leaves just a > brutal " fall out " which must be cleaned up. I think one of the greatest > gifts which came over these many years of sckleroderma was my ability to > have an open mnd to trying anything - and thus I found ayurveda. When my > finances are a bit better, because of my age, I want to also get on the goji > berry tonic but for now, it is good enough that I just have my Mother on it > and she planted three trees last week for shade for her porch - going to > turn 94 on Nov. 1 - after years of being weak and unable to do anything from > the diarrhea and heart. This is the kind of return to health I wish for you. > She had a few bladder spasms last week and was terribly annoyed by it > because she felt too " Great " to put up with those. With the load you carry as > a care giver, I would recommend all three of them to give you strength and > get thadigestional tract functioning again so that you feel better. I will > be interested in if you decide to try this and what you think. Over the > years when I was sick, i would have diarrhea and then constipation. Now I am > just normal. Normal is good and I send warm Normal wishes to you. > > > rheumatic Chronic Diarrhea > > Hello group! I have a problem. I have always been prone to having a loose > gut. It started in childhood. It was called travelers diarrhea back then and > all the tests in the world came back negative. When I came down with > systemic scleroderma, it was not my first symptoms, but somewhere in my > third year of taking antibiotics, the problem started to become more > frequent. Again all tests, colonoscopies, etc, were negative. So, nothing > was done. The last gastro doc said , it just showed that my bowel had > inflammation. Well this inflammation is getting worse. Now it is happening > after every meal. I take acidophillus, Immodium after each loose B.M. and > lactaid as I am also lactose intolerant. The lactose intolerance started > about 40 years ago. About 10 years ago I developed a hiatial hernia and an > ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did > cure the ulcer and eased the heartburn from the hernia. Then > along came the Scleroderma. The gut problem did not become uncomfortable > until the 3rd year of my disease and by then I was healing all over because > I was on Minocin. Now all the symptoms have gone, but the diarrhea and I > noticed lately about once a month, I get a spell of nausea followed by > projectile vomiting. After the episode, I feel fine and go on my way. So, > tonight I did some research and it said that diarrhea usually occurs in the > latter stages of the disease. How could that be is I am supposed to be in > remission? All other symptoms are gone. My skin is soft and supple. My heart > & lungs are behaving well. And my blood work ANA & RF is normal. I don't > have any calcinosis, raynauds, sclerodactyly, but I still have a few red > spots on my face which is the telangialectasia.Hope ( I spelled that right.) > And I have some vitiligo spots on my forehead that developed early on and > never went away. I also have white spots on my arms > and legs that never went away. It looks like I lost the pigment in those > spots. That could be part of vitiligo also. I don't have esophageal problems > as I can swallow just fine. The problem is the dumping once the food gets > down into my stomach. I get bloated, uncomfortable and gassy. I am confused. > How could I be in a late stage of scleroderma, when all signs say I'm in > remission. My last doc said it was the antibiotics and blood work showed I > was not anemic. So, I am getting some nutrition. I am not underweight nor > overweight. I am not a celiac. Have been tested several times. I am always > negative. But I am worried. Any thoughts or suggestions and has this > happened to anyone else at the 3-5 yr level of having scleroderma. I seem to > drink lots of fluids as I lose lots of fluids and feel thirsty often. I have > increased my proteins as I think I am losing mostly proteins. Have been told > in the past when I was > hospitalized to increase my proteins. Seems I have been a bit deficient in > that area.. Waiting to see if it is only me or do others with Scleroderma > have this problem also. Dolores > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hello Judy and Group, My name is Sally and I am in Iowa. I am just new to the group and feel such hope and love as I read these emails. I was diagnoised with RA 4 years ago (at a young age of 55!), been mainly alternative (except still on 5mg prednisone) and am pretty much homebound. Have been on the phone with Dr. Sinnott here in Iowa (4 hrs from me), and started AT 4 days ago. So far so good.........I feel I was divinly lead to this treatment, and have hope, faith and know, I'm on the road to recovery. I am taking minocycline (100mg twice a day) Is it important to have a brand name? If so, what works best? My heart is with all of you on this journey.........Sally Re: rheumatic Chronic Diarrhea  Hi Dolores, I wish I could offer something to you besides well wishes and that you get to the bottom of your situation quickly. I know everyone on our list will race to your cause as we all appreciate how you are there for us with each and every little problem. You were there for me last week. I know a lot about RA and that has been my focus. I'm certainly interested in all the other " ailments " our group has and is experiencing but re the knowledge part, not much on my part. Hopefully, you will get past this and it won't be anything but a minor issue. Happy 4th to you too Judy In a message dated 7/2/2010 4:52:35 A.M. Eastern Daylight Time, martysfolks2004@... writes: Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative. But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma. I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often. I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also. Dolores Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Sally, Welcome to this group. You will find a lot of support here from those with RA. Your letter takes me down memory lane. I began my journey with scleroderma with Dr. Sinnott in Iowa so many years ago. I cannot believe he has not retired but is called to keep going to help people. (And four hours would be truly a blessing! I am in Montana and traveled from here to there until I switched to Texas for treatment in order to be with my family). You are in very good hands with him. He does not make an issue of supplements or food, unless he has changed over the years, so make it your plan to go to this site and read all you can about diet and how to take care of yourself. Again, welcome and I hope you will see results quickly but if not, persevere on. Love, ps about brand name. I am told is the best brand but there could be a better one here that I do not know. Harold on this site has made this his pet project. Re: rheumatic Chronic Diarrhea Hi Dolores, I wish I could offer something to you besides well wishes and that you get to the bottom of your situation quickly. I know everyone on our list will race to your cause as we all appreciate how you are there for us with each and every little problem. You were there for me last week. I know a lot about RA and that has been my focus. I'm certainly interested in all the other " ailments " our group has and is experiencing but re the knowledge part, not much on my part. Hopefully, you will get past this and it won't be anything but a minor issue. Happy 4th to you too Judy In a message dated 7/2/2010 4:52:35 A.M. Eastern Daylight Time, martysfolks2004@... writes: Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative. But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma. I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often. I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also. Dolores Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi Dolores, a few years ago, a study done by a north European country advised against the use of h pump inhibitors when on long term abx because of clostridium difficille propensity to quickly spread its colonies in an alkaline gut. therefor do a bacterial stool study and find out if you need the metronidazole or if you can't, just take the metro and see how it feels. are you positive for h. pylori? two glasses of raw cabbage juice for a month will do wonders, you maybe able to get away from the prevacid. good luck, Ana ________________________________ From: mike rosner <martysfolks2004@...> Sclero Derma <rheumatic > Sent: Fri, July 2, 2010 1:52:26 AM Subject: rheumatic Chronic Diarrhea  Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance  started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative.  But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma.  I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often.  I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also.  Dolores     Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi Ana, Thank you for the info. I was negative for H. Pylori and neg. for C.Diff when my blood, urine and stool were examined about 3 months ago and been through all those tests many times during the course of my scleroderma journey.. I have seen several excellent gastro docs who have repeated the studies along with doing the colonoscopies and endoscopies. I am always and have always been negative for everything. Doc's have chalked it up to having IBS from the scleroderma because they cannot find the cause. I was questioning the fact that when I looked up diarrhea in scleroderma on the computer, that they wrote, " Diarrhea occurs in thelate stages of Scleroderma. That statement alarmed and confused me because I am supposedly in remission as all inflammation in my body is gone except for the gut. All blood work is normal. RF & ANA is 0. So, how could I be in late stage scleroderma when my entire body, other than the gut is free of scleroderma symptoms. That basically is my concern. I am not anemic, so I am getting sufficient nutrition and my weight is perfect for my height. Neither overweight nor underweight. I am not weak or tired nor have any aches & pains except a belly ache when the stomach blows up with gas and the diarrhea begins. Today, I have been free from diarrhea so far. This comes and goes and my husband asked if this might be the last of the mycoplasma being flushed from my body? So, far I have not heard whether this could be possible. Sort of like a herx when the body is cleaning itself out. I thank you so very much for all the info and support I have gotten since my e;mail. I was in dire pain with abdominal cramping when I wrote it. ~~~~~ Dolores From: Ana Andrescu <anaandrescu@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 8:22 PM  Hi Dolores, a few years ago, a study done by a north European country advised against the use of h pump inhibitors when on long term abx because of clostridium difficille propensity to quickly spread its colonies in an alkaline gut. therefor do a bacterial stool study and find out if you need the metronidazole or if you can't, just take the metro and see how it feels. are you positive for h. pylori? two glasses of raw cabbage juice for a month will do wonders, you maybe able to get away from the prevacid. good luck, Ana ________________________________ From: mike rosner <martysfolks2004@...> Sclero Derma <rheumatic > Sent: Fri, July 2, 2010 1:52:26 AM Subject: rheumatic Chronic Diarrhea  Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance  started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative.  But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma.  I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often.  I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also.  Dolores     Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi ladies! Flagyl, yes, I forgot about that. I will ask the doc for some. I remember many years ago when I would come home from every trip with what they called " Travelers Diarrhea " , I had been traveling throgh Mexico for several weeks when I came down with the trots as we called it then. I wound up in the hospital and was put on Flagyl. I could kick myself for not remembering that. Thank you Caren. > > > Dolores, I want to suggest a " far out " site for you to go to. I have been > on two of these for quite some time and when Mother became so ill and we > could not get rid of the daily diarrhea, I put her on one these and she is > just going strong and no diarrhea since. Please go to > www.ayurvedicbazaar.com and look up PRAAS brand CHYAWANPRASH (which Mother > is on) along with the Gojiberry tonic which is she on. I am on the > chyawanprash (praas brand) along with Bilva fruit powder whch is at the top > listed under Fruits. I have never stopped my aloe vera during the many times > I have been tempted because I buy the BEST of them and they are not cheap. > The Chyawanprash is noted to be healing to the intestines. My daughter who > suffered for years from several illnesses, two of them being bullemia and > then anorexia, suffered from intestinal problems with her debilitated and > unhealed stomach. She is now going strong on this. I don't know being just a > lay person about your tests being negative and your still having this > problem. My guess is that this is the damage left from this insidious > disease we have had. It is like my having the heart surgery and the kidney > extraction after my tests were negtive for years. I think it leaves just a > brutal " fall out " which must be cleaned up. I think one of the greatest > gifts which came over these many years of sckleroderma was my ability to > have an open mnd to trying anything - and thus I found ayurveda. When my > finances are a bit better, because of my age, I want to also get on the goji > berry tonic but for now, it is good enough that I just have my Mother on it > and she planted three trees last week for shade for her porch - going to > turn 94 on Nov. 1 - after years of being weak and unable to do anything from > the diarrhea and heart. This is the kind of return to health I wish for you. > She had a few bladder spasms last week and was terribly annoyed by it > because she felt too " Great " to put up with those. With the load you carry as > a care giver, I would recommend all three of them to give you strength and > get thadigestional tract functioning again so that you feel better. I will > be interested in if you decide to try this and what you think. Over the > years when I was sick, i would have diarrhea and then constipation. Now I am > just normal. Normal is good and I send warm Normal wishes to you. > > > rheumatic Chronic Diarrhea > > Hello group! I have a problem. I have always been prone to having a loose > gut. It started in childhood. It was called travelers diarrhea back then and > all the tests in the world came back negative. When I came down with > systemic scleroderma, it was not my first symptoms, but somewhere in my > third year of taking antibiotics, the problem started to become more > frequent. Again all tests, colonoscopies, etc, were negative. So, nothing > was done. The last gastro doc said , it just showed that my bowel had > inflammation. Well this inflammation is getting worse. Now it is happening > after every meal. I take acidophillus, Immodium after each loose B.M. and > lactaid as I am also lactose intolerant. The lactose intolerance started > about 40 years ago. About 10 years ago I developed a hiatial hernia and an > ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did > cure the ulcer and eased the heartburn from the hernia. Then > along came the Scleroderma. The gut problem did not become uncomfortable > until the 3rd year of my disease and by then I was healing all over because > I was on Minocin. Now all the symptoms have gone, but the diarrhea and I > noticed lately about once a month, I get a spell of nausea followed by > projectile vomiting. After the episode, I feel fine and go on my way. So, > tonight I did some research and it said that diarrhea usually occurs in the > latter stages of the disease. How could that be is I am supposed to be in > remission? All other symptoms are gone. My skin is soft and supple. My heart > & lungs are behaving well. And my blood work ANA & RF is normal. I don't > have any calcinosis, raynauds, sclerodactyly, but I still have a few red > spots on my face which is the telangialectasia.Hope ( I spelled that right.) > And I have some vitiligo spots on my forehead that developed early on and > never went away. I also have white spots on my arms > and legs that never went away. It looks like I lost the pigment in those > spots. That could be part of vitiligo also. I don't have esophageal problems > as I can swallow just fine. The problem is the dumping once the food gets > down into my stomach. I get bloated, uncomfortable and gassy. I am confused. > How could I be in a late stage of scleroderma, when all signs say I'm in > remission. My last doc said it was the antibiotics and blood work showed I > was not anemic. So, I am getting some nutrition. I am not underweight nor > overweight. I am not a celiac. Have been tested several times. I am always > negative. But I am worried. Any thoughts or suggestions and has this > happened to anyone else at the 3-5 yr level of having scleroderma. I seem to > drink lots of fluids as I lose lots of fluids and feel thirsty often. I have > increased my proteins as I think I am losing mostly proteins. Have been told > in the past when I was > hospitalized to increase my proteins. Seems I have been a bit deficient in > that area.. Waiting to see if it is only me or do others with Scleroderma > have this problem also. Dolores > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Hi , Thank you. I am always open to learning about new stuff, so I appreciate and will certainly investigate this thoroughly. Never heard about this before. We have an excellent health food supermarket near us and I'm sure I can find some of this stuff there. You have been super to me, Thank you so much. I was checking out aloe vera juice at the store this evening and it was all very high in sugar, so I did not buy it. I have to check for the sugar content on everything. I am type 2 diabetic. Will let you know how my investigation turns out. Thank you, so much. My best, Dolores From: Sltfain@... <Sltfain@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 4:22 PM  Dolores, I want to suggest a " far out " site for you to go to. I have been on two of these for quite some time and when Mother became so ill and we could not get rid of the daily diarrhea, I put her on one these and she is just going strong and no diarrhea since. Please go to www.ayurvedicbazaar.com and look up PRAAS brand CHYAWANPRASH (which Mother is on) along with the Gojiberry tonic which is she on. I am on the chyawanprash (praas brand) along with Bilva fruit powder whch is at the top listed under Fruits. I have never stopped my aloe vera during the many times I have been tempted because I buy the BEST of them and they are not cheap. The Chyawanprash is noted to be healing to the intestines. My daughter who suffered for years from several illnesses, two of them being bullemia and then anorexia, suffered from intestinal problems with her debilitated and unhealed stomach. She is now going strong on this. I don't know being just a lay person about your tests being negative and your still having this problem. My guess is that this is the damage left from this insidious disease we have had. It is like my having the heart surgery and the kidney extraction after my tests were negtive for years. I think it leaves just a brutal " fall out " which must be cleaned up. I think one of the greatest gifts which came over these many years of sckleroderma was my ability to have an open mnd to trying anything - and thus I found ayurveda. When my finances are a bit better, because of my age, I want to also get on the goji berry tonic but for now, it is good enough that I just have my Mother on it and she planted three trees last week for shade for her porch - going to turn 94 on Nov. 1 - after years of being weak and unable to do anything from the diarrhea and heart. This is the kind of return to health I wish for you. She had a few bladder spasms last week and was terribly annoyed by it because she felt too " Great " to put up with those. With the load you carry as a care giver, I would recommend all three of them to give you strength and get thadigestional tract functioning again so that you feel better. I will be interested in if you decide to try this and what you think. Over the years when I was sick, i would have diarrhea and then constipation. Now I am just normal. Normal is good and I send warm Normal wishes to you. rheumatic Chronic Diarrhea Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative. But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma. I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often. I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also. Dolores Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 I do not think your abdominal symptoms are related to scleroderma. do you have diabetes? if you do, you have yeast overgrowth because of sugar excess. I would watch the sugar and the ph of the stool and the urine also, have you had intestinal cleansing, solid food fasting with veggie juices only followed by starving the yeast diet.... be very careful with any fruit juices, too much fructose goji berries are too sweet for diabetics Ana ________________________________ From: mike rosner <martysfolks2004@...> rheumatic Sent: Fri, July 2, 2010 7:47:02 PM Subject: Re: rheumatic Chronic Diarrhea  Hi Ana, Thank you for the info. I was negative for H. Pylori and neg. for C.Diff when my blood, urine and stool were examined about 3 months ago and been through all those tests many times during the course of my scleroderma journey.. I have seen several excellent gastro docs who have repeated the studies along with doing the colonoscopies and endoscopies. I am always and have always been negative for everything. Doc's have chalked it up to having IBS from the scleroderma because they cannot find the cause. I was questioning the fact that when I looked up diarrhea in scleroderma on the computer, that they wrote, " Diarrhea occurs in thelate stages of Scleroderma. That statement alarmed and confused me because I am supposedly in remission as all inflammation in my body is gone except for the gut. All blood work is normal. RF & ANA is 0. So, how could I be in late stage scleroderma when my entire body, other than the gut is free of scleroderma symptoms. That basically is my concern. I am not anemic, so I am getting sufficient nutrition and my weight is perfect for my height. Neither overweight nor underweight. I am not weak or tired nor have any aches & pains except a belly ache when the stomach blows up with gas and the diarrhea begins. Today, I have been free from diarrhea so far. This comes and goes and my husband asked if this might be the last of the mycoplasma being flushed from my body? So, far I have not heard whether this could be possible. Sort of like a herx when the body is cleaning itself out. I thank you so very much for all the info and support I have gotten since my e;mail. I was in dire pain with abdominal cramping when I wrote it. ~~~~~ Dolores From: Ana Andrescu <anaandrescu@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 8:22 PM  Hi Dolores, a few years ago, a study done by a north European country advised against the use of h pump inhibitors when on long term abx because of clostridium difficille propensity to quickly spread its colonies in an alkaline gut. therefor do a bacterial stool study and find out if you need the metronidazole or if you can't, just take the metro and see how it feels. are you positive for h. pylori? two glasses of raw cabbage juice for a month will do wonders, you maybe able to get away from the prevacid. good luck, Ana ________________________________ From: mike rosner <martysfolks2004@...> Sclero Derma <rheumatic > Sent: Fri, July 2, 2010 1:52:26 AM Subject: rheumatic Chronic Diarrhea  Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance  started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative.  But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma.  I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often.  I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also.  Dolores     Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2010 Report Share Posted July 3, 2010 Hi Ana, Yes, I am a diabetic and have been for at least 18-20 yrs. I am well controlled with Metformin and Januvia. My A1C's remain at 6 and my finger sticks are maintained between 90 & 120. I haven't used sugar in almost 20 yrs. although I know that the body makes sugar from starches. I eliminated fruit juices, carrot juices and beets from my diet ages ago. I also test my pH urine level with the strips you can purchase at the super market and they remain at about 7. I never thought about testing the stool sample. I will do that and see if that may be the problem. Thank you for alerting me to that possibility I certainly will test it and check it out. I value all suggestions and ideas. And am very grateful for such an overwhelming response to my dilemma. Will let you all know when the problem is fixed. I'll keep searching till then.  Thank you all so very very much. Dolores From: Ana Andrescu <anaandrescu@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 8:22 PM  Hi Dolores, a few years ago, a study done by a north European country advised against the use of h pump inhibitors when on long term abx because of clostridium difficille propensity to quickly spread its colonies in an alkaline gut. therefor do a bacterial stool study and find out if you need the metronidazole or if you can't, just take the metro and see how it feels. are you positive for h. pylori? two glasses of raw cabbage juice for a month will do wonders, you maybe able to get away from the prevacid. good luck, Ana ________________________________ From: mike rosner <martysfolks2004@...> Sclero Derma <rheumatic > Sent: Fri, July 2, 2010 1:52:26 AM Subject: rheumatic Chronic Diarrhea  Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance  started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative.  But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma.  I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often.  I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also.  Dolores     Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2010 Report Share Posted July 3, 2010 Hi Ana, Reading over some of your e-mails as they are interesting, I want to ask you what an hpump inhibitor is. I don't recall hearing about that. Thanks Dolores From: Ana Andrescu <anaandrescu@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 8:22 PM  Hi Dolores, a few years ago, a study done by a north European country advised against the use of h pump inhibitors when on long term abx because of clostridium difficille propensity to quickly spread its colonies in an alkaline gut. therefor do a bacterial stool study and find out if you need the metronidazole or if you can't, just take the metro and see how it feels. are you positive for h. pylori? two glasses of raw cabbage juice for a month will do wonders, you maybe able to get away from the prevacid. good luck, Ana ________________________________ From: mike rosner <martysfolks2004@...> Sclero Derma <rheumatic > Sent: Fri, July 2, 2010 1:52:26 AM Subject: rheumatic Chronic Diarrhea  Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance  started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative.  But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma.  I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often.  I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also.  Dolores     Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2010 Report Share Posted July 3, 2010 Thank you Judy, I appreciate your well wishes, The warm thoughts are an important  healing factor. And I appreciate those always. Have a great 4th.Dolores From: Judkeels@... <Judkeels@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 3:03 PM  Hi Dolores, I wish I could offer something to you besides well wishes and that you get to the bottom of your situation quickly. I know everyone on our list will race to your cause as we all appreciate how you are there for us with each and every little problem. You were there for me last week. I know a lot about RA and that has been my focus. I'm certainly interested in all the other " ailments " our group has and is experiencing but re the knowledge part, not much on my part. Hopefully, you will get past this and it won't be anything but a minor issue. Happy 4th to you too Judy In a message dated 7/2/2010 4:52:35 A.M. Eastern Daylight Time, martysfolks2004@... writes: Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative. But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma. I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often. I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also. Dolores Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2010 Report Share Posted July 3, 2010 Hi Dolores, I do not know of a way of testing stool ph at home. Labs can do it for you. like I said, an alkaline stool due to lack of stomach acid helps clostridium or other unfriendly bug growth. can you get your fasting sugar to 80? eliminate starch, do a protein and leafy veggies for a while and see how you feel. but before that, an abdominal cleansing would be great. good luck, Ana ________________________________ From: mike rosner <martysfolks2004@...> rheumatic Sent: Sat, July 3, 2010 2:22:38 AM Subject: Re: rheumatic Chronic Diarrhea  Hi Ana, Yes, I am a diabetic and have been for at least 18-20 yrs. I am well controlled with Metformin and Januvia. My A1C's remain at 6 and my finger sticks are maintained between 90 & 120. I haven't used sugar in almost 20 yrs. although I know that the body makes sugar from starches. I eliminated fruit juices, carrot juices and beets from my diet ages ago. I also test my pH urine level with the strips you can purchase at the super market and they remain at about 7. I never thought about testing the stool sample. I will do that and see if that may be the problem. Thank you for alerting me to that possibility I certainly will test it and check it out. I value all suggestions and ideas. And am very grateful for such an overwhelming response to my dilemma. Will let you all know when the problem is fixed. I'll keep searching till then.  Thank you all so very very much. Dolores From: Ana Andrescu <anaandrescu@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 8:22 PM  Hi Dolores, a few years ago, a study done by a north European country advised against the use of h pump inhibitors when on long term abx because of clostridium difficille propensity to quickly spread its colonies in an alkaline gut. therefor do a bacterial stool study and find out if you need the metronidazole or if you can't, just take the metro and see how it feels. are you positive for h. pylori? two glasses of raw cabbage juice for a month will do wonders, you maybe able to get away from the prevacid. good luck, Ana ________________________________ From: mike rosner <martysfolks2004@...> Sclero Derma <rheumatic > Sent: Fri, July 2, 2010 1:52:26 AM Subject: rheumatic Chronic Diarrhea  Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance  started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative.  But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma.  I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often.  I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also.  Dolores     Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2010 Report Share Posted July 3, 2010 those are ppis or proton pump inhibitors, the proton is the hydrogen. the medications that inhibit acid production and of course changes the overall ph balance Ana ________________________________ From: mike rosner <martysfolks2004@...> rheumatic Sent: Sat, July 3, 2010 2:26:42 AM Subject: Re: rheumatic Chronic Diarrhea  Hi Ana, Reading over some of your e-mails as they are interesting, I want to ask you what an hpump inhibitor is. I don't recall hearing about that. Thanks Dolores From: Ana Andrescu <anaandrescu@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 8:22 PM  Hi Dolores, a few years ago, a study done by a north European country advised against the use of h pump inhibitors when on long term abx because of clostridium difficille propensity to quickly spread its colonies in an alkaline gut. therefor do a bacterial stool study and find out if you need the metronidazole or if you can't, just take the metro and see how it feels. are you positive for h. pylori? two glasses of raw cabbage juice for a month will do wonders, you maybe able to get away from the prevacid. good luck, Ana ________________________________ From: mike rosner <martysfolks2004@...> Sclero Derma <rheumatic > Sent: Fri, July 2, 2010 1:52:26 AM Subject: rheumatic Chronic Diarrhea  Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance  started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative.  But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma.  I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often.  I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also.  Dolores     Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2010 Report Share Posted July 3, 2010 Thank you. I never had one, Nor did anyone ever suggest that I get one. Thank you for the enlightment. I will look them over just so I know about them. You learn something new everyday. I have been out of practise too long and am getting too old to remember everything I once knew. Still my interest is in everything medical and I like to keep abreast of the everchanging approaches. Thank you so much. I have implemented some of the suggestions that came pouring in and for which I am so grateful. So far, I am 2 days free of having loose bowels and glad to be more comfortable. The abdominal cramps have abated and I am enjoying this respite. Thanks for all your help and suggestions. Will let the board know when this problem is completely gone and what the cause was.. Take care, ~~~Stay well, Dolores From: Ana Andrescu <anaandrescu@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 8:22 PM  Hi Dolores, a few years ago, a study done by a north European country advised against the use of h pump inhibitors when on long term abx because of clostridium difficille propensity to quickly spread its colonies in an alkaline gut. therefor do a bacterial stool study and find out if you need the metronidazole or if you can't, just take the metro and see how it feels. are you positive for h. pylori? two glasses of raw cabbage juice for a month will do wonders, you maybe able to get away from the prevacid. good luck, Ana ________________________________ From: mike rosner <martysfolks2004@...> Sclero Derma <rheumatic > Sent: Fri, July 2, 2010 1:52:26 AM Subject: rheumatic Chronic Diarrhea  Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance  started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative.  But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma.  I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often.  I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also.  Dolores     Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2010 Report Share Posted July 3, 2010 This sounds like a good idea. I can do a steak and leafy salad every day of the week. In my youth, I used to do that diet everytime, I would put on an extra 5 lbs and it always worked. Can i add green peppers, onions and some garlic salt to the meat? Just kidding! I usually do flavor my meat with onions & peppers & garlic. This is the easy part. As far as the fast, that is a bit scary as I take two kinds of antidiabetic meds and am afraid of going into hypoglycemia. I would rather do that when a doctor is monitoring me. I had the discussion about the lowered standards of the morning glucose being 80 or below with several docs and most of them don't agree with it. They prefer the 90-120 range. They said it is more important to keep the A1C down around 6 which shows that the patient has kept the glucose readings at a more even level. In my early years before I had my sugar under control, I went into hypoglycemia several times and that was scary. Once in a crowd, I started shaking violently and profusly sweating. luckily I knew the symptoms and grabbed a bottle of Pepsi and drank it down fast and then followed with another until the shaking stopped. I was drenched with perspiration That happened when I was first put on diabetic medication. The doctor took me off the medicine and I went along on diet & exercise alone for another two years before I was put on newer, safer meds that did not produce the drop in glucose I had experienced earlier. Right now I am on metformin and Januvia. I had been on Metformin & Amaryl for a long time with great success. But like all diabetic meds, they stop working after a while. I was then put on Injectible Insulin, and had the sorest thighs. My thighs all turned black & blue. That was the only place I felt comfortable injecting myself. and the Insulin was not keeping my glucose level low enough. So, I was given Januvia about a year ago and my readings have been good since. If I am to go on a fast it would have to be under the direction of an M.D. I couldn't try it alone. It is a good suggestion, but for me a scary one. Couldn't I just stick the pH paper into the loose stool and read the level of acidity or alkaline the way saliva results are read?~~~I'm going to try it and see. ~~~~ Just curios, ~~~~~Dolores   From: Ana Andrescu <anaandrescu@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 8:22 PM  Hi Dolores, a few years ago, a study done by a north European country advised against the use of h pump inhibitors when on long term abx because of clostridium difficille propensity to quickly spread its colonies in an alkaline gut. therefor do a bacterial stool study and find out if you need the metronidazole or if you can't, just take the metro and see how it feels. are you positive for h. pylori? two glasses of raw cabbage juice for a month will do wonders, you maybe able to get away from the prevacid. good luck, Ana ________________________________ From: mike rosner <martysfolks2004@...> Sclero Derma <rheumatic > Sent: Fri, July 2, 2010 1:52:26 AM Subject: rheumatic Chronic Diarrhea  Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance  started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative.  But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma.  I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often.  I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also.  Dolores     Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2010 Report Share Posted July 3, 2010 Hi Dolores, if you are using prevacid which is a proton pump inhibitor, and you are on long term abx, you need to be very careful about unfriendly bacterial growth encouraged by the alkaline ph of the stool. on top of that, how do you get your b vits that are so very important if you dont have the acid to digest animal protein? you need to investigate, your problem may come from the use of prevacid. Ana ________________________________ From: mike rosner <martysfolks2004@...> rheumatic Sent: Sat, July 3, 2010 11:00:01 AM Subject: Re: rheumatic Chronic Diarrhea  Thank you. I never had one, Nor did anyone ever suggest that I get one. Thank you for the enlightment. I will look them over just so I know about them. You learn something new everyday. I have been out of practise too long and am getting too old to remember everything I once knew. Still my interest is in everything medical and I like to keep abreast of the everchanging approaches. Thank you so much. I have implemented some of the suggestions that came pouring in and for which I am so grateful. So far, I am 2 days free of having loose bowels and glad to be more comfortable. The abdominal cramps have abated and I am enjoying this respite. Thanks for all your help and suggestions. Will let the board know when this problem is completely gone and what the cause was.. Take care, ~~~Stay well, Dolores From: Ana Andrescu <anaandrescu@...> Subject: Re: rheumatic Chronic Diarrhea rheumatic Date: Friday, July 2, 2010, 8:22 PM  Hi Dolores, a few years ago, a study done by a north European country advised against the use of h pump inhibitors when on long term abx because of clostridium difficille propensity to quickly spread its colonies in an alkaline gut. therefor do a bacterial stool study and find out if you need the metronidazole or if you can't, just take the metro and see how it feels. are you positive for h. pylori? two glasses of raw cabbage juice for a month will do wonders, you maybe able to get away from the prevacid. good luck, Ana ________________________________ From: mike rosner <martysfolks2004@...> Sclero Derma <rheumatic > Sent: Fri, July 2, 2010 1:52:26 AM Subject: rheumatic Chronic Diarrhea  Hello group! I have a problem. I have always been prone to having a loose gut. It started in childhood. It was called travelers diarrhea back then and all the tests in the world came back negative. When I came down with systemic scleroderma, it was not my first symptoms, but somewhere in my third year of taking antibiotics, the problem started to become more frequent. Again all tests, colonoscopies, etc, were negative. So, nothing was done. The last gastro doc said , it just showed that my bowel had inflammation. Well this inflammation is getting worse. Now it is happening after every meal. I take acidophillus, Immodium after each loose B.M. and lactaid as I am also lactose intolerant. The lactose intolerance  started about 40 years ago. About 10 years ago I developed a hiatial hernia and an ulcer. Doc said it was negative for bacteria and gave me Prevacid. That did cure the ulcer and eased the heartburn from the hernia. Then along came the Scleroderma. The gut problem did not become uncomfortable until the 3rd year of my disease and by then I was healing all over because I was on Minocin. Now all the symptoms have gone, but the diarrhea and I noticed lately about once a month, I get a spell of nausea followed by projectile vomiting. After the episode, I feel fine and go on my way. So, tonight I did some research and it said that diarrhea usually occurs in the latter stages of the disease. How could that be is I am supposed to be in remission? All other symptoms are gone. My skin is soft and supple. My heart & lungs are behaving well. And my blood work ANA & RF is normal. I don't have any calcinosis, raynauds, sclerodactyly, but I still have a few red spots on my face which is the telangialectasia.Hope ( I spelled that right.) And I have some vitiligo spots on my forehead that developed early on and never went away. I also have white spots on my arms and legs that never went away. It looks like I lost the pigment in those spots. That could be part of vitiligo also. I don't have esophageal problems as I can swallow just fine. The problem is the dumping once the food gets down into my stomach. I get bloated, uncomfortable and gassy. I am confused. How could I be in a late stage of scleroderma, when all signs say I'm in remission. My last doc said it was the antibiotics and blood work showed I was not anemic. So, I am getting some nutrition. I am not underweight nor overweight. I am not a celiac. Have been tested several times. I am always negative.  But I am worried. Any thoughts or suggestions and has this happened to anyone else at the 3-5 yr level of having scleroderma.  I seem to drink lots of fluids as I lose lots of fluids and feel thirsty often.  I have increased my proteins as I think I am losing mostly proteins. Have been told in the past when I was hospitalized to increase my proteins. Seems I have been a bit deficient in that area.. Waiting to see if it is only me or do others with Scleroderma have this problem also.  Dolores     Quote Link to comment Share on other sites More sharing options...
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