Comments for The Gluten Syndrome at http://www.ei-resource.org , comment 1 to 8 out of 8 comments http://www.ei-resource.org Sat, 21 Nov 2009 05:03:42 +0100 FeedCreator 1.7.2 http://www.ei-resource.org/myblog/The-Gluten-Syndrome.html#comment-684 Hi Bonnie, Many of us here, including myself, can certainly sympathise with you having been passed from doctor to doctor and gone through a barrage of tests - and still having no answers! The researcher that I based this blog on suggests that there is a spectrum of gluten sensitivity with celiac disease at one end and mild gluten sensitivity at the other. Those with celiac disease must avoid ANY gluten at all or damage to the lining of their small intestine can occur and symptoms return. However, if this researcher is correct it's possible those with only mild gluten sensitivity may be able to tolerate small amounts. It is best to listen to your own body however, if you feel ill after a soup thickened with flour you will certainly react to pasta if wheat/gluten is the problem! I know it will be hard staying on a GFD being a vegetarian and allergic to soy, but won't it be worth it if it if means your symptoms are under control! Good luck :) - Maff Wed, 01 Jul 2009 09:11:23 +0100 http://www.ei-resource.org/myblog/The-Gluten-Syndrome.html#comment-683 I have lived in a fog for so many years and I am so hoping this is the answer. I have gone through psychologists, neurologists, MRI's, PET scans, naturopaths, ADHD medicine, thyroid medicine, toxic metal testing, etc. It is nearly impossible to navigate through the medical professionals when you are confused and can't remember what tests you've had, what the results were, even what your symptoms are. I tested positive for wheat two years ago and checked out the symptoms. I really felt I did not have CD and got scoped. The scope was negative and I triumphantly told my doctor I was not giving up gluten, her tests were hogwash. Now I find myself no better and have found others complaining of neurological symptoms without intestinal problems. So I am trying a GFD. While I find it horrible (I am a vegetarian who is also allergic to soy), I have great hopes. I don't understand, however, if the amount of gluten has any impact, or if ANY gluten causes a reaction. I was beginning, I think, to feel better after about 10 days, but I ate in a restaurant and had pea soup which probably was thickened with flour, but I thought it would be in a very small amount. So here I sit with a headache, confusion, lethargy. No web sites seem to address this issue. If it is the gluten that is making me confused, would I feel worse had I eaten pasta? I want to stop looking at the world through a fog. I have tried so many avenues. Any advice or referral to other web sites would be greatly appreciated. - Bonnie Wed, 01 Jul 2009 01:04:03 +0100 http://www.ei-resource.org/myblog/The-Gluten-Syndrome.html#comment-549 Hi Denise, Yes, there is a strong connection between celiac disease and autoimmune thyroiditis - which results in hypothyroidism. The person you mention may well have had hypothyroidism that was the result of celiac disease which then cleared up when she went on a gluten-free diet to treat this. If you suspect celiac disease might be the underlying cause of your thyroid problems I'd recommend you have the tests which I mentioned to Alea above. If you want to try the gluten-free diet (the only treatment for celiac disease) have a look at the links in the original blog post as these detail which foods are to be avoided and some useful alternatives. - Maff Fri, 15 May 2009 13:54:31 +0100 http://www.ei-resource.org/myblog/The-Gluten-Syndrome.html#comment-548 Is there a link between this and thyroid disorders and what food should you stay clear of? I do know someone who thought they had Hypothyrodism and found out later that she had Celics after changing her diet she very soon noticed some amazing results. - DeniseB Fri, 15 May 2009 13:34:56 +0100 http://www.ei-resource.org/myblog/The-Gluten-Syndrome.html#comment-544 Hi Alea, No problem, that's what I'm here for :) Celiac disease certainly isn't the only gastrointestinal condition that can run in families, IBS seems to as well, for example. However, given the fact so many of your family members are affected and seem to do well when avoiding gluten I'd recommend you get properly tested for celiac disease so you know for sure. If your results are positive then perhaps that will convince your mum and sister to get tested as well. Good luck! - Maff Thu, 14 May 2009 13:49:35 +0100 http://www.ei-resource.org/myblog/The-Gluten-Syndrome.html#comment-543 Hi Maff, My mom and one of my sisters were also diagnosed w/IBS, but I suspect that that they're misdiagnosed as well. They started little by little to do a gluten-free diet, as I insisted that they could have celiac disease or be sensitive to gluten, they are not doing it strictly yet but I think eventually they will, as they are already feeling much better when they avoid foods containing gluten. My mom told me that 2 of her siblings also have the same digestive problems and that she remembers her dad having digestive disorders as well....................... Maff thank you for all the info and your advise!!!!!!!!!!!!!! - ale Thu, 14 May 2009 01:30:21 +0100 http://www.ei-resource.org/myblog/The-Gluten-Syndrome.html#comment-542 Hi Alea, Thanks for posting your experiences with a gluten-free diet. It sounds like many of us, you have really benefitted from it. Does anyone else in your family have celiac disease? It is considered hereditary so people who have the disease tend to have close relatives with the condition. You could always have a blood test done which would give a good indication, they are very cheap nowadays. The ones to go for are either anti-tissue transglutaminase antibodies (tTGA) or anti-endomysial antibodies (EMA). Great news that you have been doing so well on Martin Pall's protocol for MCS as well. Many visitors with MCS are reporting great results - which isn't surprising if you have read any of Dr. Pall's work. For those who haven't I'd recommend starting here: [url=http://www.ei-resource.org/articles/multiple-chemical-sensitivity-articles/multiple-chemical-sensitivity--the-end-of-controversy/]Multiple Chemical Sensitivity - The End of Controversy[/url] Alea, whether you have celiac disease or gluten sensitivity if you stay away from those nasty cupcakes you should start to feel better again without any lasting effects as your immune and nervous systems regain their balance. I hope you feel better soon and thanks again for sharing :) - Maff Wed, 13 May 2009 10:47:41 +0100 http://www.ei-resource.org/myblog/The-Gluten-Syndrome.html#comment-539 I was diagnosed with IBS around 1995. In 2005 I went to see an Integrative Dr and he told me that I was misdiagnosed that I was sensitive to gluten, and he put me on a gluten free diet. I really don't know if I have celiac disease because I didn't do any test. but I am still on the gluten free diet, since then all my digestive problems are gone. I do the diet very strictly but once in a while (every 2 or 3 moths) I eat something with gluten and experience neurological symptoms, like last friday, I ate a cupcake! OMG! It was terrible, I was with migraine/headache, nausea, dizziness, confusion for 3 days.... I regret it so badly! I was doing so good on Dr Martin Pall's protocol (I have MCS) until the cupcake!! - Alea Wed, 13 May 2009 02:02:24 +0100