Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Thanks Jax! I never really knew anything about celiac or the genetic thing until 6 months ago when I started seeing my great new pcp doc. At the time, I was basically trying to find a better answer for my fibromyalgia symptoms than what my doctors and most of the medical society were saying - "it was a disorder of unknown cause and was considered incurable" - which made no sense whatsoever to me. How can something be incurable if you don't know what's causing it? At any rate, once I learned about celiac/gluten sensitivity and went gluten-free, I started feeling better. However, I tried to tell the folks over on one of the fibro forums about celiac and it didn't go over so well - I think that it was the fact that I was telling people to stop eating wheat 2 days before Thanksgiving that did it......lol. Anyway, since that experience, I have tried not to upset anyone by constantly bringing up the same subject - so I try and tread pretty lightly. I am planning on posting about the MTHFR stuff as it also has a correlation to hepatitis c - particularly "fatty liver" - something about high homocysteine levels. And that docs should probably be genetically testing their patients prior to being treated for hep c - in my case, the mutation affects the red blood cells - and had I gone through the treatment, it could have been very dangerous for me. I'll post that stuff later. Anyway, thanks for your post - and it is worth looking into - celiac and gluten sensitivity are slowly being recognized - this year the FDA is making it mandatory for manufacturers to clearly label their products with any allergens - and gluten-free products are predicted to boom. As will more information and recognition from the medical society. "The gluten we have now is the not the same as we had in the '60s. We've engineered the wheat; we're not eating the same bread. The result is a wheat hybrid that grows well in adverse conditions - it's more resistant to insects. Gluten protein is toxic to insects; the higher the gluten content, the less bugs, but the high gluten content may influence the body's reaction." Hugs back at ya! Chris First off , there is NO NEED to appologize for posting information that may be helpful for a number of us here on this forum... So,, please feel free to post anything that correlates to hep c here for all of us to read.. Many folks will either read the article of they wont,,and its ok,, you never know when something you've posted will truely help another..This is something that I think I may need to look into,, there is no reason for the kind of ongoing fatigue that I have that nearly keeps me from getting out of bed most days.. Its been 5 years since I finished tx and Im still very sick and it just might be something as simple as this,, I just dont know,,but my point for posting this right now is to tell you that you do NOT need to appologize for posting helpful info nor do you need to stop posting them.. All I would ask is that you make sure you put Celiac in the subject line so that if there are some who dont want to read it, they can just click on the delete button and not read it,, does that make sense hon? Thank you for being so helpful! hugsjaxsmalk50aol wrote: Hi, I have never treated my hep-c, so perhaps it is not my place to post things regarding interferon. I have nothing but the utmost respect for all of you who are courageous enough to undergo the treatment.It's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 My sed rate has always been okay. My docs (or old docs) refused to do an RA test on me because they said that the hep-c virus would result in a false positive. I got into a heated debate about my ANA levels with the head of Rhematology over at the teaching hospital last week (with a room full of med students) - I was confused because mu ANA had doubled since going gluten-free - they were supposed to go down..:<(... -. He said that hep-c trumps all - RA and ANA tests in particular and those tests would be useless to run. It took me a week to get over that appointment........ If CRP stands for C-reactive protein, then mine was also normal at 0.10, which greatly excited my new (good) doc - no inflammation. Thyroid, hormones, insulin were miraculously all normal. Try and get tested if you can - or if you can find a doc that knows which tests to run - I read that it takes an average of 8-11 years to get a correct diagnosis of celiac/gluten sensitivity as most docs still believe that it is a rare disease of childhood - is now at a rate of 1 in a hundred but 1 in 20 if a family member has it. Take care! Chris You're very welcome honquestion, since you have fibro and I do too,, do you have an elevated sedimentation rate or elevated RA factors? What about CRP? All of mine are elevated and indicate an ongoing inflammation but they dont know why or what..smalk50aol wrote: Thanks Jax! I never really knew anything about celiac or the genetic thing until 6 months ago when I started seeing my great new pcp doc. At the time, I was basically trying to find a better answer for my fibromyalgia symptoms than what my doctors and most of the medical society were saying - "it was a disorder of unknown cause and was considered incurable" - which made no sense whatsoever to me. How can something be incurable if you don't know what's causing it? At any rate, once I learned about celiac/gluten sensitivity and went gluten-free, I started feeling better. However, I tried to tell the folks over on one of the fibro forums about celiac and it didn't go over so well - I think that it was the fact that I was telling people to stop eating wheat 2 days before Thanksgiving that did it......lol. Anyway, since that experience, I have tried not to upset anyone by constantly bringing up the same subject - so I try and tread pretty lightly. I am planning on posting about the MTHFR stuff as it also has a correlation to hepatitis c - particularly "fatty liver" - something about high homocysteine levels. And that docs should probably be genetically testing their patients prior to being treated for hep c - in my case, the mutation affects the red blood cells - and had I gone through the treatment, it could have been very dangerous for me. I'll post that stuff later. Anyway, thanks for your post - and it is worth looking into - celiac and gluten sensitivity are slowly being recognized - this year the FDA is making it mandatory for manufacturers to clearly label their products with any allergens - and gluten-free products are predicted to boom. As will more information and recognition from the medical society. "The gluten we have now is the not the same as we had in the '60s. We've engineered the wheat; we're not eating the same bread. The result is a wheat hybrid that grows well in adverse conditions - it's more resistant to insects. Gluten protein is toxic to insects; the higher the gluten content, the less bugs, but the high gluten content may influence the body's reaction." Hugs back at ya! Chris In a message dated 3/15/2008 4:42:51 P.M. Central Daylight Time, redjaxjm writes: First off , there is NO NEED to appologize for posting information that may be helpful for a number of us here on this forum... So,, please feel free to post anything that correlates to hep c here for all of us to read.. Many folks will either read the article of they wont,,and its ok,, you never know when something you've posted will truely help another..This is something that I think I may need to look into,, there is no reason for the kind of ongoing fatigue that I have that nearly keeps me from getting out of bed most days.. Its been 5 years since I finished tx and Im still very sick and it just might be something as simple as this,, I just dont know,,but my point for posting this right now is to tell you that you do NOT need to appologize for posting helpful info nor do you need to stop posting them.. All I would ask is that you make sure you put Celiac in the subject line so that if there are some who dont want to read it, they can just click on the delete button and not read it,, does that make sense hon? Thank you for being so helpful! hugsjaxsmalk50aol wrote: Hi, I have never treated my hep-c, so perhaps it is not my place to post things regarding interferon. I have nothing but the utmost respect for all of you who are courageous enough to undergo the treatment. It's Tax Time! Get tips, forms and advice on AOL Money Finance. Jackie It's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 You're very welcome honquestion, since you have fibro and I do too,, do you have an elevated sedimentation rate or elevated RA factors? What about CRP? All of mine are elevated and indicate an ongoing inflammation but they dont know why or what..smalk50@... wrote: Thanks Jax! I never really knew anything about celiac or the genetic thing until 6 months ago when I started seeing my great new pcp doc. At the time, I was basically trying to find a better answer for my fibromyalgia symptoms than what my doctors and most of the medical society were saying - "it was a disorder of unknown cause and was considered incurable" - which made no sense whatsoever to me. How can something be incurable if you don't know what's causing it? At any rate, once I learned about celiac/gluten sensitivity and went gluten-free, I started feeling better. However, I tried to tell the folks over on one of the fibro forums about celiac and it didn't go over so well - I think that it was the fact that I was telling people to stop eating wheat 2 days before Thanksgiving that did it......lol. Anyway, since that experience, I have tried not to upset anyone by constantly bringing up the same subject - so I try and tread pretty lightly. I am planning on posting about the MTHFR stuff as it also has a correlation to hepatitis c - particularly "fatty liver" - something about high homocysteine levels. And that docs should probably be genetically testing their patients prior to being treated for hep c - in my case, the mutation affects the red blood cells - and had I gone through the treatment, it could have been very dangerous for me. I'll post that stuff later. Anyway, thanks for your post - and it is worth looking into - celiac and gluten sensitivity are slowly being recognized - this year the FDA is making it mandatory for manufacturers to clearly label their products with any allergens - and gluten-free products are predicted to boom. As will more information and recognition from the medical society. "The gluten we have now is the not the same as we had in the '60s. We've engineered the wheat; we're not eating the same bread. The result is a wheat hybrid that grows well in adverse conditions - it's more resistant to insects. Gluten protein is toxic to insects; the higher the gluten content, the less bugs, but the high gluten content may influence the body's reaction." Hugs back at ya! In a message dated 3/15/2008 4:42:51 P.M. Central Daylight Time, redjaxjm writes: First off , there is NO NEED to appologize for posting information that may be helpful for a number of us here on this forum... So,, please feel free to post anything that correlates to hep c here for all of us to read.. Many folks will either read the article of they wont,,and its ok,, you never know when something you've posted will truely help another..This is something that I think I may need to look into,, there is no reason for the kind of ongoing fatigue that I have that nearly keeps me from getting out of bed most days.. Its been 5 years since I finished tx and Im still very sick and it just might be something as simple as this,, I just dont know,,but my point for posting this right now is to tell you that you do NOT need to appologize for posting helpful info nor do you need to stop posting them.. All I would ask is that you make sure you put Celiac in the subject line so that if there are some who dont want to read it, they can just click on the delete button and not read it,, does that make sense hon? Thank you for being so helpful! hugsjaxsmalk50aol wrote: Hi, I have never treated my hep-c, so perhaps it is not my place to post things regarding interferon. I have nothing but the utmost respect for all of you who are courageous enough to undergo the treatment.It's Tax Time! Get tips, forms and advice on AOL Money Finance. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Hi ChrisMy RA factors and Sed rate along with CRP are all elevated but my ANA is negative.. I didnt know the ANA had a number, I thought it was either negative or positive,, so I had better do some more research.. My Sarcoidosis test was negative but I was still diagnosed with it because I have had to have two sarcoid membranes removed from my right eye twice so that is my diagnosis,, I AM very glad that its not in my chest tho and only in one eye so far.. My doc says that the Sarcoidosis can and does cause the ESR, CRP as well as the Elevated RA factors... no one seems to know just what it is,, but I hurt all the time even with 60 mg of timed released morphine in the am and 60 mg in the evening,, I stil have break through pain and have instant release liquid for that.. and I now have a medical cannabis card and make tea out of it and that helps too,, besides living in my hot tub..lol.. Ill talk with my doc about it but she probably wont test me because I have none of the bloody/mucousy diarrhea and gas/bloat etc.. who knows, but I will ask,, My mom had that test and she is negative for celiac even tho she has severe diarrhea that has lasted for nearly 8 months and counting,, lolHave a good weekend,, Ill chat with you again soonjaxsmalk50@... wrote: My sed rate has always been okay. My docs (or old docs) refused to do an RA test on me because they said that the hep-c virus would result in a false positive. I got into a heated debate about my ANA levels with the head of Rhematology over at the teaching hospital last week (with a room full of med students) - I was confused because mu ANA had doubled since going gluten-free - they were supposed to go down..:<(... -. He said that hep-c trumps all - RA and ANA tests in particular and those tests would be useless to run. It took me a week to get over that appointment........ If CRP stands for C-reactive protein, then mine was also normal at 0.10, which greatly excited my new (good) doc - no inflammation. Thyroid, hormones, insulin were miraculously all normal. Try and get tested if you can - or if you can find a doc that knows which tests to run - I read that it takes an average of 8-11 years to get a correct diagnosis of celiac/gluten sensitivity as most docs still believe that it is a rare disease of childhood - is now at a rate of 1 in a hundred but 1 in 20 if a family member has it. Take care! In a message dated 3/15/2008 5:18:39 P.M. Central Daylight Time, redjaxjm writes: You're very welcome honquestion, since you have fibro and I do too,, do you have an elevated sedimentation rate or elevated RA factors? What about CRP? All of mine are elevated and indicate an ongoing inflammation but they dont know why or what..smalk50aol wrote: Thanks Jax! I never really knew anything about celiac or the genetic thing until 6 months ago when I started seeing my great new pcp doc. At the time, I was basically trying to find a better answer for my fibromyalgia symptoms than what my doctors and most of the medical society were saying - "it was a disorder of unknown cause and was considered incurable" - which made no sense whatsoever to me. How can something be incurable if you don't know what's causing it? At any rate, once I learned about celiac/gluten sensitivity and went gluten-free, I started feeling better. However, I tried to tell the folks over on one of the fibro forums about celiac and it didn't go over so well - I think that it was the fact that I was telling people to stop eating wheat 2 days before Thanksgiving that did it......lol. Anyway, since that experience, I have tried not to upset anyone by constantly bringing up the same subject - so I try and tread pretty lightly. I am planning on posting about the MTHFR stuff as it also has a correlation to hepatitis c - particularly "fatty liver" - something about high homocysteine levels. And that docs should probably be genetically testing their patients prior to being treated for hep c - in my case, the mutation affects the red blood cells - and had I gone through the treatment, it could have been very dangerous for me. I'll post that stuff later. Anyway, thanks for your post - and it is worth looking into - celiac and gluten sensitivity are slowly being recognized - this year the FDA is making it mandatory for manufacturers to clearly label their products with any allergens - and gluten-free products are predicted to boom. As will more information and recognition from the medical society. "The gluten we have now is the not the same as we had in the '60s. We've engineered the wheat; we're not eating the same bread. The result is a wheat hybrid that grows well in adverse conditions - it's more resistant to insects. Gluten protein is toxic to insects; the higher the gluten content, the less bugs, but the high gluten content may influence the body's reaction." Hugs back at ya! In a message dated 3/15/2008 4:42:51 P.M. Central Daylight Time, redjaxjm writes: First off , there is NO NEED to appologize for posting information that may be helpful for a number of us here on this forum... So,, please feel free to post anything that correlates to hep c here for all of us to read.. Many folks will either read the article of they wont,,and its ok,, you never know when something you've posted will truely help another..This is something that I think I may need to look into,, there is no reason for the kind of ongoing fatigue that I have that nearly keeps me from getting out of bed most days.. Its been 5 years since I finished tx and Im still very sick and it just might be something as simple as this,, I just dont know,,but my point for posting this right now is to tell you that you do NOT need to appologize for posting helpful info nor do you need to stop posting them.. All I would ask is that you make sure you put Celiac in the subject line so that if there are some who dont want to read it, they can just click on the delete button and not read it,, does that make sense hon? Thank you for being so helpful! hugsjaxsmalk50aol wrote: Hi, I have never treated my hep-c, so perhaps it is not my place to post things regarding interferon. I have nothing but the utmost respect for all of you who are courageous enough to undergo the treatment. It's Tax Time! Get tips, forms and advice on AOL Money Finance. Jackie It's Tax Time! Get tips, forms and advice on AOL Money Finance. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Many of the substances in MJ are not water-soluble, You 'may' get better results if You 'cook' it (in food/s) and EAT the MJ rather than making 'tea' out of it-? Just asking/trying to help. > Hi, > I have never treated my hep-c, so perhaps it is not my place to post things regarding interferon. I have nothing but the utmost respect for all of you who are courageous enough to undergo the treatment. > > > > > > > > > > --------------------------------- > It's Tax Time! Get tips, forms and advice on AOL Money Finance. > > > > > > Jackie > > > > > > > > > --------------------------------- > It's Tax Time! Get tips, forms and advice on AOL Money Finance. > > > > > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Yeah - ANA is interesting - I copied an explanation of it and have a link that explains the different patterns and their meanings - For instance, mine was 1:1280 which was double what it was before I went gluten-free at 1:640 and described as being "Atypical Speckled" which is associated with SLE, Sjogren's syndrome, scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease. This describes it better: " An antinuclear antibody (ANA) test measures the amount and pattern of antibodies in your blood that work against your own body (autoimmune). The results of an ANA test are usually given in titers. A titer is a measure of how much the blood sample can be diluted before the presence of the antibodies can no longer be detected. For example, a titer of 1 to 40 (1:40) means that antibodies can be detected when 1 part of the blood sample is diluted by up to 40 parts of a salt solution (saline). A larger second number means there are more antibodies in the blood. Therefore, a titer of 1 to 80 indicates more antibodies in the blood than a titer of 1 to 40. Normal values are usually 1:40 or less." However, having the hep c virus as well as other health problems, medication, etc. often do give very inaccurate readings so I'm not too worried about it. http://www.labtestsonline.org/understanding/analytes/ana/test.html Sarcoidosis is also on the gluten linked list - here's a PubMed abstract on it: "Evidence of gastrointestinal immune reactivity in patients with sarcoidosis" CONCLUSION: We have demonstrated a high frequency of gastric autoimmunity and gluten-associated immune reactivity in patients with sarcoidosis, occurring in almost 40% of the cases, the former being the most frequent gastrointestinal immune manifestation. http://www.ncbi.nlm.nih.gov/pubmed/10363754?ordinalpos=1 & itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA Also, 50% of people with celiac/gluten intolerance have NO symptoms. NOBODY thinks that they have it! And a lot of docs know nothing about it and/or only run an IgA test instead of the full celiac panel. My IgA was normal but my IgG was high - it's normal now. And a lot of hep-c folks are IgA deficient as you probably already know, so running the IgA alone is not enough. The best test is just to go gluten-free for a week and see if you feel any better - I was lucky and felt better within days. It just sounds so suspicious when you mentioned that your Mom has symptoms but tests negative - celiac runs in families. Did they run the complete celiac panel? Other foods can cause problems as well - lactose intolerance for one - though it is usually secondary to gluten - Antigliadin IgA and IgG (indicates gluten sensitivity) Anti-tTG and/or anti-endomysial Total serum IgA (rules out IgA deficiency) Anti-reticulin IgA For more about gluten and "At Risk Populations" (note that hep-c is on it) , as well as a host of PubMed publications, here's a good link: http://jccglutenfree.googlepages.com/atriskpopulation Hope this helps! Chris Hi ChrisMy RA factors and Sed rate along with CRP are all elevated but my ANA is negative.. I didnt know the ANA had a number, I thought it was either negative or positive,, so I had better do some more research.. My Sarcoidosis test was negative but I was still diagnosed with it because I have had to have two sarcoid membranes removed from my right eye twice so that is my diagnosis,, I AM very glad that its not in my chest tho and only in one eye so far.. My doc says that the Sarcoidosis can and does cause the ESR, CRP as well as the Elevated RA factors... no one seems to know just what it is,, but I hurt all the time even with 60 mg of timed released morphine in the am and 60 mg in the evening,, I stil have break through pain and have instant release liquid for that.. and I now have a medical cannabis card and make tea out of it and that helps too,, besides living in my hot tub..lol.. Ill talk with my doc about it but she probably wont test me because I have none of the bloody/mucousy diarrhea and gas/bloat etc.. who knows, but I will ask,, My mom had that test and she is negative for celiac even tho she has severe diarrhea that has lasted for nearly 8 months and counting,, lolHave a good weekend,, Ill chat with you again soonjaxsmalk50aol wrote: My sed rate has always been okay. My docs (or old docs) refused to do an RA test on me because they said that the hep-c virus would result in a false positivIt's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 I am also in So. CA. However, my current PCP seems,...uh,...'less-than-interested' in authorizing/prescribing MJ for me. Perhaps I need to find a more 'compassionate/daring' Dr., and just pay for the consultation/s 'out-of-pocket'-? Finding a Dr. with those qualities isn't an easy task. Please tell me if You know of any resources to help find a good Dr. in these regards, and also to be able to get a 'card', would be a great help here for me, and others. TIA BTW Feel free to email me 'off-list' if need be. > > Hi, > > I have never treated my hep-c, so perhaps it is > not my place to post things regarding interferon. I have > nothing but the utmost respect for all of you who are > courageous enough to undergo the treatment. > > > > > > > > > > > > > > > > > > > > --------------------------------- > > It's Tax Time! Get tips, forms and advice on AOL Money > Finance. > > > > > > > > > > > > Jackie > > > > > > > > > > > > > > > > > > --------------------------------- > > It's Tax Time! Get tips, forms and advice on AOL Money Finance. > > > > > > > > > > > > Jackie > > > > > > > > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 emailed you off the forumDUG wrote: I am also in So. CA. However, my current PCP seems,...uh,...'less-than-interested' in authorizing/prescribing MJ for me. Perhaps I need to find a more 'compassionate/daring' Dr., and just pay for the consultation/s 'out-of-pocket'-? Finding a Dr. with those qualities isn't an easy task. Please tell me if You know of any resources to help find a good Dr. in these regards, and also to be able to get a 'card', would be a great help here for me, and others. TIA BTW Feel free to email me 'off-list' if need be. > > Hi, > > I have never treated my hep-c, so perhaps it is > not my place to post things regarding interferon. I have > nothing but the utmost respect for all of you who are > courageous enough to undergo the treatment. > > > > > > > > > > > > > > > > > > > > --------------------------------- > > It's Tax Time! Get tips, forms and advice on AOL Money > Finance. > > > > > > > > > > > > Jackie > > > > > > > > > > > > > > > > > > --------------------------------- > > It's Tax Time! Get tips, forms and advice on AOL Money Finance. > > > > > > > > > > > > Jackie > > > > > > > > > Jackie > Jackie Quote Link to comment Share on other sites More sharing options...
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