Guest guest Posted April 29, 2003 Report Share Posted April 29, 2003 Hi Mel...i also thougth i had celiac and was tested. i did not...but it is DEFINITELY a high possibility in immune problems. i have read it can mimic inflammatory diseases. my AP doc tested me for it in blood. and i got an endoscopy. have you gotten the blood test done? if you do have it i know a lot about a gluten free diet. before i was tested i went on a gluten free diet to see if it would help. i wanted to say the low iron levels can also be attributed to an infection (not always but sometimes) bacteria thrives off of iron. the anemia resolves after the infection resolves. good luck with everything. rachael > Hey guys, > > I just went to my rheumy and he thinks that I have celiac disease. So > far all I know is that it is common for type 1 diabetics and RA > patients. I have both. Also, symptoms include tooth discoloration > (also attributable to Minocin usage), low iron levels (also attributable > to RA), and low B12 levels (I never knew I was low on this until today). > It means that I am allergic to glutens (made from wheat, rye, and > barley). Does anyone else know anything about this? I am not going to > be able to eat anything the way my health has been doing. Thanks in > advance for any advice or knowledge you have to offer. > > Still optimistic, > Mel > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 As far as I know, Celiac's has nothing to do with mercury but does have something to do with Autism. My understanding is that an inordinately high number of autistics have Celiac's. My oldest son has a different genetic disorder which, like Celiac's, also negatively impacts the digestive system. My opinion: I think the " connection " here is that metal poisoning also negatively impacts the gut. I have read a few things about how the gut has, in effect, its own " brain " and how gut problems can impact brain chemistry (especially " leaky gut " and allergies which can have drug-like impacts on the brain). The common thread here seems to be the gut issues and related brain impacts. Treating the gut issues can make a huge difference for some of these kids. My 2 cents, -- Michele in Limbo (formerly in California) talithamichele@... Visit Michele's World! http://www.califmichele.com " Peace cannot be kept by force. It can only be achieved by understanding. " -- Albert Einstein Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Oops -- I had not seen Dana's reply when I wrote this (my comments below). So I want to make sure that people realize this is NOT a " rebuttal " of her comments. I was just stating that it is my understanding that lots of ASD kids have celiac's, compared to the rest of the population. On 3/16/06, Michele <talithamichele@...> wrote: > > As far as I know, Celiac's has nothing to do with mercury but does have > something to do with Autism. My understanding is that an inordinately high > number of autistics have Celiac's. My oldest son has a different genetic > disorder which, like Celiac's, also negatively impacts the digestive > system. My opinion: I think the " connection " here is that metal poisoning > also negatively impacts the gut. I have read a few things about how the gut > has, in effect, its own " brain " and how gut problems can impact brain > chemistry (especially " leaky gut " and allergies which can have drug-like > impacts on the brain). The common thread here seems to be the gut issues > and related brain impacts. Treating the gut issues can make a huge > difference for some of these kids. > > My 2 cents, > > -- > Michele in Limbo (formerly in California) > > talithamichele@... > > > Visit Michele's World! > http://www.califmichele.com > > " Peace cannot be kept by force. It can only be achieved by understanding. " > -- Albert Einstein > > -- Michele in Limbo (formerly in California) talithamichele@... Visit Michele's World! http://www.califmichele.com " Peace cannot be kept by force. It can only be achieved by understanding. " -- Albert Einstein Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Michele, Please don't take my post as a 'rebuttal' either. I just want to explain why I think that there is a mercury-celiac connection, at least for some people. In my early twenties I had a huge exposure to mercury (but I didn't realize it at the time). During the same summer that I was exposed to large quantities of mercury I developed severe gut problems (pain, bleeding, mucous, IB, sorry to be so graphic, it was fairly awful), and ended up going for the entire barium series, GI tract, enema, everything. The gut problems settled down a bit, but continued until I stopped eating gluten, and then they stopped cold. So for me it really seemed like the mercury exposure induced the gluten intolerance. There must be a genetic predisposition as well because my Dad is gluten intolerant. Neither one of us has a celiac diagnosis, mostly because we haven't gone to ask for one. J > > > > As far as I know, Celiac's has nothing to do with mercury but does have > > something to do with Autism. My understanding is that an inordinately high > > number of autistics have Celiac's. My oldest son has a different genetic > > disorder which, like Celiac's, also negatively impacts the digestive > > system. My opinion: I think the " connection " here is that metal poisoning > > also negatively impacts the gut. I have read a few things about how the gut > > has, in effect, its own " brain " and how gut problems can impact brain > > chemistry (especially " leaky gut " and allergies which can have drug-like > > impacts on the brain). The common thread here seems to be the gut issues > > and related brain impacts. Treating the gut issues can make a huge > > difference for some of these kids. > > > > My 2 cents, > > > > -- > > Michele in Limbo (formerly in California) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 No , not taking it as a rebuttal at all. I have at times commented at some length on this list about what I think concerning the interplay between genetics and environmental factors and that I think environmental factors are a bigger thing than is usually credited. Actually, having now found the original comments by someone in a different thread, it turns out the person wasn't even asking about a celiac's- ASD link, only a celiac's- mercury link. I feel a little foolish having commented at all! :-D Peace -- Michele in Limbo (formerly in California) talithamichele@... Visit Michele's World! http://www.califmichele.com " Peace cannot be kept by force. It can only be achieved by understanding. " -- Albert Einstein Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Anything that causes a leaky gut could contribute to celiac disease. The intact gliadin protein has to cross the intestinal wall in order for the immune system to become sensitized to it. That is much more likely with a leaky gut. Both autism and mercury poisoning have high rates of leaky gut problems. There is a genetic component as well. So some with a leaky gut, but no genetic component, may not become celiac. And some with a minor leaky gut and strong genetic component are very likely to become celiac. -- > > A newbie earlier had mentioned mercury poisoning in her kids but also > mentioned if celiac's had anything to do with mercury. I had said > probably but something that may be helpful is the GFCF diet. It seems > to help that! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 > > Oops -- I had not seen Dana's reply when I wrote this (my comments below). > So I want to make sure that people realize this is NOT a " rebuttal " of her > comments. I don't mind if you DO post rebuttals to my comments. Everyone's opinion and experiences are important. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 > > Oops -- I had not seen Dana's reply when I wrote this (my comments below). > So I want to make sure that people realize this is NOT a " rebuttal " of her > comments. I don't mind if you DO post rebuttals to my comments. Everyone's opinion and experiences are important. Dana --- You're sweet. :-) My concern wasn't really with upsetting you. It was that because my comments came after yours, it might sound like a rebuttal and that might confuse the issue. I don't personally know of a connection between mercury and celiac's but I have heard of a connection between celiac's and ASD. If you personally know of cases where treating for mercury removed or reduced symptoms of celiac's, that doesn't contradict my statements at all -- my lack of knowledge of a connection doesn't in any way suggest a lack of a connection. If I thought I knew something which contradicted your statements or which suggested a different interpretation, I don't have a problem with stating that. I just didn't want to muddy the waters unnecessarily, if that makes sense. -- Michele in Limbo (formerly in California) talithamichele@... Visit Michele's World! http://www.califmichele.com " Peace cannot be kept by force. It can only be achieved by understanding. " -- Albert Einstein Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2006 Report Share Posted March 18, 2006 > You're sweet. :-) My concern wasn't really with upsetting you. It is very improbable that an online message would upset me. >>If I thought I knew something which > contradicted your statements or which suggested a different interpretation, > I don't have a problem with stating that. Good! Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Hi group, I was diagnosed with RA 8 yrs ago and as I've said before here, went onto the antibiotic treatment from the get go....never used any of the other drugs. (minocin and now zithramax and doxy). I am one of the ones, unfortunately, who never even came close to remission and although I don't ever want to go on the " big hitters " , I do always have some pain, definitely stiffness and am limited in what I can do in regard to activities. I function normally with everyday things, but I can't walk quickly or run and do more than a slow dance, if you get the drift. After reading many posts about celiac disease and that until it's controlled and out of the system, AP does not kick in, I'm wondering about the possibility of my being allergic to gluten. I've never had any allergies in my life that I was aware of. Any opinions as to if it could be a possibility and that could be the reason why the AP protocol isn't working for me as I had hoped? thanks for all your valued opinions and knowledge, as usual. Judy Keels ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Hi ; A very high percentage of people with chronic disease have a gluten problem.It took me over a year to clear it from my body.I did not know I had CD and for years AP did nothing for me.After a year of avoiding gluten I was a bit better.6 months after avoiding all foods with vitaminD and sun I was in remission.You should sighn up for the weekly news letter from celiac.com. Lynne G./SD http://www.celiac.com/cgi-bin/webc.cgi/st_prod.html?p_prodid=1417 & p_catid= & p_pri\ nt=y & sid=91hH9H1kUAE313v-06107615751.e1 <http://www.celiac.com/cgi-bin/webc.cgi/st_prod.html?p_prodid=1417 & p_catid= & p_pr\ int=y & sid=91hH9H1kUAE313v-06107615751.e1> ------------------------------------------------------------------------ Celiac_com Celiac Disease & Gluten-Free Diet Support Page Gluten Sensitivity: A GastroenterologistâEUR^s Personal Journey Down the Gluten Rabbit Hole by Dr. Scot Lewey Copyright © 1995-2007 . This article appeared in the Winter 2007 edition of Celiac.com's -Free Newsletter <http://www.celiac.com/catalog/index.php?cPath=47>. Celiac.com 01/30/2007 - Gluten intolerance resulting in symptoms and illness similar to celiac disease without meeting diagnostic criteria for celiac disease is a new concept. This concept of non-celiac gluten sensitivity (NCGS) or gluten related disease (GRD) may be a new paradigm that is hard for some people to swallow, especially when I suggest that it affects as much as 10% to 30% of the population. Gluten ingestion is an avoidable, treatable, and reversible cause of illness in many people. It is contributing to the rising epidemic of autoimmune diseases. Many resist these concepts finding them either unbelievable, unacceptable or both. I believe that their rejection is neither rational nor helpful. It may be reasonable to reject them for cultural or financial reasons though I don't believe they can legitimately be rejected based on scientific grounds or experience. Celiac disease is not rare. Celiac disease affects 1 in 100 people in the world. Yet the diagnosis of celiac disease is still frequently missed and/or delayed. It is a common disease that is often undiagnosed or misdiagnosed. It may even be the most common autoimmune disorder. Though the risk is largely genetic, it is preventable by simply avoiding gluten. Autoimmune diseases associated with celiac disease may also be preventable by avoiding gluten. When I was in medical school over twenty-five years ago, I was taught that celiac disease was rare. In residency we were shown photos of short, emaciated children with skinny limbs and pot-bellies. We were told that their medical history included symptoms of profuse, watery, floating, foul-smelling diarrhea, and iron deficiency anemia. The picture and story was burned into the hard drive of our brains, not necessarily because anyone believed we would see someone with celiac disease in our practice, but because celiac disease was considered rare and odd enough that it was a favorite board examination question. That image and story remains in the mind of most physicians, preventing them from seeing celiac disease in a much broader light. When I entered subspecialty training in gastroenterology, 13 years ago, specific blood tests for celiac disease were available but still new. We were beginning to order the blood test when classic symptoms of celiac disease were seen without an identifiable cause, or if we happened to sample the small intestine during endoscopy and classic Sprue changes were seen in the intestinal biopsy. celiac disease was still considered somewhat rare. We did not routinely biopsy the small intestine to screen for celiac disease, and genetic tests were not yet available. It wasn't until 2003 that Fasano's landmark article reported Celiac disease affected 1 in 133 people in the U.S. Only recently has it been accepted that family members of people with celiac disease, those with digestive symptoms, osteoporosis, anemia, and certain neurological, skin or autoimmune disorders constitute high risk groups for celiac disease. They have an even higher risk of between 2% to 5%, though most physicians are unaware of these statistics. Every week, using the strict diagnostic criteria, I confirm 2-3 new cases of celiac disease. I also see 5-10 established celiac disease patients. However, for every identified celiac disease patient there are 3-10 who have clinical histories consistent with celiac disease, but who fail to meet the diagnostic criteria. Yet they respond to a gluten-free diet. Many have suggestive blood test results, biopsies and or gene patterns but some do not. More than 90% of people proven to have celiac disease carry one or both of two white blood cell protein patterns or human leukocyte antigen (HLA) patterns HLA DQ2 and/or DQ8. However, so do 35-45% of the general U.S. population, especially those of Northern European ancestry. Yet celiac disease is present in only 1% of the same population. DQ2 or DQ8 are considered by some experts to be necessary though not sufficient to develop celiac disease. However, celiac disease without those two genes has been reported. Other gluten related diseases including dermatitis herpetiformis, the neurological conditions of ataxia and peripheral neuropathy, and microscopic colitis have been described in DQ2 and DQ8 negative individuals. The DQ genetic patterns found in other gluten related diseases and associated with elevated stool antibody tests indicate that many more people are genetically at risk for gluten sensitivity. Furthermore, the response of numerous symptoms to gluten-free diet is not limited to people who are DQ2 or DQ8 positive. Most celiac experts agree upon and feel comfortable advising people who meet the strict criteria for the diagnosis of celiac disease: they need to follow a life-long gluten-free diet. Controversy and confusion arises when the strict criteria are not met, yet either patient and/or doctor believe that gluten is the cause of their symptoms and illness. Many alternative practitioners advise wheat-free, yeast-free diets, which are frequently met with favorable response to what is really a form of gluten-free diet. Similarly, the popularity and successes of low carbohydrate diets require adherence to a diet that has been credited with improvement of headaches, fatigue, bloating, musculoskeletal aches, and an increased general sense of well-being that is self-reported by many dieters. I believe this is because of the low gluten content. Gluten avoidance is clearly associated with improvement of many intestinal and extra-intestinal symptoms such as those listed above. Many also stumble onto this association after initiating a gluten-free diet or wheat-free diet on the advice of friends or family members; dieticians, nutritionists, alternative or complementary practitioners; or after reading an article on the Internet. Within the medical community, there seems to be an irrational resistance to a more widespread recommendation for gluten avoidance. Physicians who maintain that those who fail to meet strict criteria for diagnosis of celiac disease should not be told they have to follow a gluten-free diet will often acknowledge that many of these patients respond favorably to a gluten-free diet. Some, however, continue to insist that a gluten-free diet trial is unnecessary, unduly burdensome, or not scientifically proven to benefit those who do not have celiac disease. This position is taken despite the absence of evidence that a gluten-free diet is unhealthy or dangerous and much evidence supporting it as a healthy diet. Those of us who have observed dramatic improvements, both personally and professionally, find such resistance to recommending a gluten-free diet to a broader group of people difficult to understand. Considering the potential dangers and limited benefits of the medications that we, as doctors, prescribe to patients for various symptoms, it really seems absurd to reject dietary treatments. Yet, it does not seem to cross most doctors' minds to suggest something as safe and healthy as a gluten-free diet, let alone to, at least, test for celiac disease. My personal journey into gluten related illness began when my physician wife was diagnosed with celiac disease. I had mentioned to her numerous times over several years that I thought she should be tested for celiac disease. After her second pregnancy she became progressively more ill experiencing, for the first time in her life, diarrhea, fatigue, and chronic neuropathy. An upper endoscopy revealed classic endoscopic findings. Celiac disease blood tests were elevated, and genetic testing confirmed she was DQ2 positive. This forever changed our lives and my practice. But the story doesn't end there. Having diagnosed myself with irritable bowel syndrome (IBS) and lactose intolerance in medical school, I had not considered gluten as a possible cause of my symptoms until my wife turned the table on me and said I should also be tested for celiac disease. My blood tests were not elevated but I was confirmed to also be DQ2 positive. Having observed a good response to gluten-free diet in a few of my patients who had elevated stool gliadin antibody levels, I looked critically at the research behind this testing and spoke with Dr. Ken Fine before paying to have my entire family tested through Enterolab. Both my gliadin and tTG antibodies were elevated and I responded well to a gluten-free diet. I began recommending stool antibody and DQ genetic screening to patients who did not meet the strict criteria for celiac disease but appeared to have symptoms suggestive of gluten sensitivity. Contrary to some critics' claims about the stool antibody tests, there are many people who do not have elevated levels. Almost everyone I have seen with elevated levels has noted improvement with gluten-free diet, including myself. Not only did my " IBS " symptoms resolve and lactose tolerance dramatically improve, but my eyes were further opened to the spectrum of gluten related illness or symptoms. I was already aggressively looking for celiac disease in my patients but I began considering non-celiac gluten sensitivity (NCGS) or gluten related diseases (GRD) in all my patients. What I have found is that gluten is an extremely common but frequently missed cause of intestinal and non-intestinal symptoms. Dramatic improvements in symptoms and health can be observed in patients who try a gluten-free diet. Since only a fraction of DQ2 or DQ8 positive individuals have or will eventually get celiac disease, does that mean gluten is safe to eat if you have those gene patterns? Even if you do not get celiac disease, does continuing to eat gluten put you at risk for other autoimmune diseases, especially ones linked to the high risk gene patterns? Why do some people with these patterns get celiac disease but most do not? Do some who do not have celiac disease experience symptoms from gluten that would improve with gluten-free diet? These questions need to be answered so that people can decide whether they want to risk that gluten is causing them to be ill, or is increasing their risk of celiac disease or other autoimmune diseases. Added to my gluten-free diet, a daily diet of scientific articles on celiac and gluten related disease has revealed that there are many clues in the literature and research indicating the existence of non-celiac gluten sensitivity or a need to broaden our definition of celiac disease. Dr. Hadjivassiliou has called for a new paradigm. He advocates that we start thinking of gluten sensitivity not as an intestinal disease but a spectrum of multiple organ, gluten-related diseases. Schluckebier, director of CSA, asks that physicians interested in this area work on forming and agreeing on new definitions for gluten related illness while pushing for more research and cooperation between medical researchers, food and agricultural scientists, dieticians, and food manufacturers. Only those who look for NCGS and advise a gluten-free diet to those not meeting the strict criteria for celiac disease, are going to see the larger group of people who have a favorable response to a broader application of the gluten-free diet without further research. Those of us who are personally affected by gluten sensitivity or professionally involved in treating individuals with adverse reactions to gluten (or both) should support the research into the broader problem of gluten related illness. I believe that NCGS is real and will be validated in studies. Are you open to this concept and are you willing support more research in this area? Dr. Scot Lewey is a physician who is specialty trained and board certified in the field of gastroenterology (diseases of the digestive system) who practices his specialty in Colorado. He is the physician advisor to the local celiac Sprue support group and is a published author and researcher who is developing a web based educational program for people suffering from food intolerances, www.thefooddoc.com <http://www.thefooddoc.com> Copyright 2006 The Food Doc, LLC. . <http://www.celiac.com/cgi-bin/webc.cgi/TellFriend.html?p_prodid=1417 & p_catid= & s\ id=91hH9H1kUAE313v-19107054567.f0> Back to: Article / Item <http://www.celiac.com/cgi-bin/webc.cgi/st_prod.html?p_prodid=1417 & p_catid= & sid=\ 91hH9H1kUAE313v-19107054567.f0> > Celiac.com Site Index <http://www.celiac.com/cgi-bin/webc.cgi/st_main.html?p_catid=0 & sid=91hH9H1kUAE31\ 3v-19107054567.f0> > Celiac Disease Information - Summary / Overview <http://www.celiac.com/cgi-bin/webc.cgi/st_main.html?p_catid=5 & sid=91hH9H1kUAE31\ 3v-19107054567.f0> Celiac.com Sponsor: <http://www.celiac.com/cgi-bin/webc.cgi/advertising.html?sid=91hH9H1kUAE313v-191\ 07054567.f0> Gluten Free Foods Online <http://www.glutenfreemall.com/> Gluten-Free Food <http://www.glutenfreemall.com> smoosh215 wrote: > Hi y'all > > I've posted a few times and have gotten such great insight from you > all that I thought I'd try again. > > I have just gotten back yet another blood test result this time with > something to go on, I think. > > Previous tests have all come back negative for everything but the > last time I posted someone told me about celiac disease. Since I've > eliminated grains and gluten I have had somewhat of an improvement. > I asked the Dr to test for celiac and boom, a weak positive shows > up. But this time so does the RA factor and the Aldolase (aldoase > has been elevated a little once before and normal once before) What > I've read about aldoase is that you should avoid strenuous activity > before the test and get tested fasting. Well, I have 2 year old > twins and a four year old and live in a two-story house - my day > starts off requiring strenuous activity. And I was never told to go > fasting for these tests. I feel I do not have muscle weakness at > all anywhere in my body but my joints and ligaments are sore and > swollen - this is what prompted me to go to the dr.'s in the first > place. The first two dr.s thought it was RA right off the bat. But > this current dr. wants to get to the root of the problem - which is > greatly appreciated! > > So, having said all that, what do you all think? If my joint pain > is caused by CD, how long will it take to get the gluten out of my > system and return to normal? And what do I make of the elevated RA > factor and aldolase? My sedementation rate has always been on the > low side of normal despite the inflamation in my joints. > > Any insight would be greatly appreciated. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Hi Judy; You can get your own test that is a heck of a lot cheaper than going to the doc to have it done.My doctor told me to get cracking and do it as she says it is better than a blood test. I have the most wonderful doctor now but she sure makes us responsible for ourselves.Go to www.enterolab.com and chose the test you wish.pay by credit card,they send a kit,you send in a stool sample and they e-mail the results in a few weeks. I had absolutely no symptoms and most people do not know they have it either.What a shock when I saw how bad my numbers were.By the way,most people with celiac have a serious sensitivity to anything " cow " but after a couple of years,once the CD is controled we can bring back beef and dairy very slowly and in small amounts.Because od CD we do not absorb our minerals or EFA s very well.Tri Salts are neede and not just your average mineral supplements. Lynne G Judkeels@... wrote: > Hi group, > I was diagnosed with RA 8 yrs ago and as I've said before here, went onto > the antibiotic treatment from the get go....never used any of the > other drugs. > (minocin and now zithramax and doxy). > I am one of the ones, unfortunately, who never even came close to > remission > and although I don't ever want to go on the " big hitters " , I do always > have > some pain, definitely stiffness and am limited in what I can do in > regard to > activities. I function normally with everyday things, but I can't walk > quickly > or run and do more than a slow dance, if you get the drift. After reading > many posts about celiac disease and that until it's controlled and out > of the > system, AP does not kick in, I'm wondering about the possibility of my > being > allergic to gluten. I've never had any allergies in my life that I was > aware of. > Any opinions as to if it could be a possibility and that could be the > reason > why the AP protocol isn't working for me as I had hoped? > thanks for all your valued opinions and knowledge, as usual. > Judy Keels > > ************************************** See what's free at > http://www.aol.com. <http://www.aol.com.> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Wow! Michele, you sure do your homework. I love to read e-mails like this because you are a fighter and want to get to the root of the problem. I am not a celiac. The one who will probably answer you is lynneandsantos@.... If she misses this one, then send her your e-mail. I'm sure there are others who can help you with the information on the other lab tests and whether or not they were done properly and should or should not be repeated. I will be watching the posts to see what comes out of this e-mail as I am doing research for a book and learning from all of you. I have S/D & R/A. Have been on A/P since January, 2006. I just went into remission in May, 2007 and hopeful that I will start M/P in October when the days grow shorter. God bless you and your family. You sure have a plateful there. Good luck! Dolores smoosh215 <smoosh215@...> wrote: Hi y'all I've posted a few times and have gotten such great insight from you all that I thought I'd try again. I have just gotten back yet another blood test result this time with something to go on, I think. Previous tests have all come back negative for everything but the last time I posted someone told me about celiac disease. Since I've eliminated grains and gluten I have had somewhat of an improvement. I asked the Dr to test for celiac and boom, a weak positive shows up. But this time so does the RA factor and the Aldolase (aldoase has been elevated a little once before and normal once before) What I've read about aldoase is that you should avoid strenuous activity before the test and get tested fasting. Well, I have 2 year old twins and a four year old and live in a two-story house - my day starts off requiring strenuous activity. And I was never told to go fasting for these tests. I feel I do not have muscle weakness at all anywhere in my body but my joints and ligaments are sore and swollen - this is what prompted me to go to the dr.'s in the first place. The first two dr.s thought it was RA right off the bat. But this current dr. wants to get to the root of the problem - which is greatly appreciated! So, having said all that, what do you all think? If my joint pain is caused by CD, how long will it take to get the gluten out of my system and return to normal? And what do I make of the elevated RA factor and aldolase? My sedementation rate has always been on the low side of normal despite the inflamation in my joints. Any insight would be greatly appreciated. --------------------------------- Bored stiff? Loosen up... Download and play hundreds of games for free on Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 My daughter and your son could be twins and her celiac panel, while technically negative, was irregular and the GI thinks she has it. If he is doing that well then it simply may not be active celiac. Have you checked your other child. In the wrong kid celiac could cause a whole host of issues in a child and get labels that are unnecessary and cause health problems that never should have been. rainydev wrote: >My younger son, who has no neuro or developmental issues (we had him >evaluated by EI to see where he is at to be safe due to his older >brother severe issues- and he tested off the charts in the upper 90s! >in many areas) > >Anyway, I took him to the doctor thinking he may have milk allergy. I >finally put together his chronic red bumpy mild rash, chronic diarhea >that comes and goes, his tummy aches. It finally occured to me that he >should be checked out because these could be related and could be >helped. So anyway, took him to the doc, he tested first for Celiac >disease and told me after this comes back if negative then we will >test for all other food allergies, maybe send him to an allergist etc. > >Well I called in to see the results. The doc was out of town but the >nurse said that one of his tests came back indicating he may have >celiac disease. Apparently his IEG? I think, ? level was borderline >too high. Just looking for any input or experiences of others who have >kids with celiac or any experience you have had with the testing >accuracy ? > >It's weird to me, that one son has all these issues and somehow celiac >is somehow related because I see so many talk about celiac with >apraxia ? And now my other son who has none of the apraxia etc issues >may have celiac disase! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 I had read about this. My mom died of lymphoma at 31, an unaddressed celiac complication. Her mother was bipolar. Those things and a few more fun family stories were of interest to our GI. The genetic testing was very helpful in our case. I have all the celiacc genes, daughter has 1 of them and son has the gluten sensitivity gene is studying. The diet for us, as long as they live with me, will be followed in my presence. What they do on their own I can't control. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Did you read her last post? At the end..anyway...hmmm...maybe she is coming around....? ilizzy03 wrote: > I had read about this. My mom died of lymphoma at 31, an unaddressed > celiac complication. Her mother was bipolar. Those things and a few > more fun family stories were of interest to our GI. The genetic testing > was very helpful in our case. I have all the celiacc genes, daughter > has 1 of them and son has the gluten sensitivity gene is > studying. The diet for us, as long as they live with me, will be > followed in my presence. What they do on their own I can't control. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 This post was meant for another group. Multi posting mix up and thats why it makes no sense. Nickerson wrote: > Did you read her last post? At the end..anyway...hmmm...maybe she is > coming around....? > > ilizzy03 wrote: > >> I had read about this. My mom died of lymphoma at 31, an unaddressed >> celiac complication. Her mother was bipolar. Those things and a few >> more fun family stories were of interest to our GI. The genetic testing >> was very helpful in our case. I have all the celiacc genes, daughter >> has 1 of them and son has the gluten sensitivity gene is >> studying. The diet for us, as long as they live with me, will be >> followed in my presence. What they do on their own I can't control. >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 Hi, I am new to this site, so would appreciate any info. anyone could provide me. I'm looking for nutritional support of people who might think like I do, or to even correct me if I do not have good information. I think that some of you may understand where I am coming from. I tried a couple of times to get diagnosed for Celiac disease and was told I didn't have it. However, as it turns out, I may not have been eating enough gluten at the time to get a reaction from conventional testing procedures. So, I recently went to another lab, which is highly rated by many non-conventional medical practitioners (but also maligned by conventional practioners) and was diagnosed with sensitivity to wheat gluten. If anyone knows better, please correct me if I am wrong, but as I am beginning to understand it, the real disease is gluten sensitivity. This manifests itself in different ways with different people; Celiac Disease, auto-immune disorders, Dermatitis Herpetiformis, and lots of other supposed diseases are actually the symptoms of gluten sensitivity. I have read that if the gluten is sprouted or fermented it could be OK as these processes help to break down the gluten. In theory that sounds good, but I'm not sure how well that holds out in practice, but may be fine for people who do not have extensive damage to their health from eating gluten on a long term basis. One problem I see is that it seems to me that people who were diagnosed a long time ago, or who began working in this area along time ago may have out dated information and do not at all seem open to new information. They have found something that works for some and earns them a living so there is no need to go on. There only seems to be a few people trying to put things together and see things from a larger perspective. I have tried to get involved in support groups in this area, and it seems to me they have fairly poor nutritional information. Their meetings are like feeding frenzies to try the newest gluten free products on the market, which, while they may be glutten free, judging from the ingredients, most are neither real food nor edible and NOT something I want to put in my body. Since these groups do not have good information on nutrition, it also leaves them prey to companies trying to pushing all sorts of cheap, unhealthy ingredients in their products; soy, tvp, etc.. I tried to get gluten free recipes from several people in these groups and some of them NEVER cook!! They buy everything prepackaged. The point to these meetings to me really seems to be how to get a junk food carb fix without the glutten reaction, never mind having a healthy diet. As I understand it, knowing some anthropology, we do not even need to eat grains. You can eat good nutritious meals eating meat, fruit, vegetables, and healthy oils. You can have nutritious grains as a part of your meals, but they must be sprouted or fermented. Most of my frends, while they do not eat the gluten free junk food, they eat your regular junk food. So, I am at a loss to find supportive people wanting to eat a healthy diet. One idea I think I need to get out of my own head is that it is possible to get a copy of some product I like, but just be gluten free. I've been disappointed because its not the same texture, taste etc. Rather than use chemical additives and fake food particles to achieve a good gluten free knockoff, I'd rather develop new tastes and have something that's healthy and tastes good for what it is. That's easier said than done, though. I think my one big weakness is danish. So, I am trying to eat properly prepared grains, when I do have them, but mostly meat, fruit and vegetables. I will be looking forward to anyone's response. Sincerely, Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 have you checked out this group? GFCFNN/ > > Hi, > > I am new to this site, so would appreciate any info. anyone > could provide me. I'm looking for nutritional support of people who might think like I do, or to even correct me if I do not have good information. I think that some of you may understand where I am coming from. I > tried a couple of times to get diagnosed for Celiac disease and was > told I didn't have it. However, as it turns out, I may not have been > eating enough gluten at the time to get a reaction from conventional > testing procedures. So, I recently went to another lab, which is > highly rated by many non-conventional medical practitioners (but also > maligned by conventional practioners) and was diagnosed with > sensitivity to wheat gluten. Quote Link to comment Share on other sites More sharing options...
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