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Claire

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Everything posted by Claire

  1. Claire
    You can check out Entrolab - they do a stool sample test for celiac - no gluten challenge necessary. Absolutely don't do the gluten challenge - not worth risking even more damaage.
  2. Claire
    Thanks for this. Creative. Sounds good. Now i have to find Tofuitti 'cream cheese'. Have never seen it anywhere Claire
  3. Claire
    Readers here may find this interesting: The Causes The leaky gut syndrome is basically caused by inflammation of the gut lining. This inflammation is usually brought about by the following: · Antibiotics because they lead to the overgrowth of abnormal flora in the gastrointestinal tract (bacteria, parasites, candida, fungi) · Alcohol and caffeine (...
  4. Claire
    The villi flattening and subsequent leaky gut can be caused by reactive foods. I have Type II, Delayed Food reactions to a broad range of reactive foods. I was given L-glutamine to heal the intestinal lining damage caused by these food reactions. I may or may not have celiac disease, Not yet determined. Claire
  5. Claire
    Don't want to rain on anyone's parade but I have posted here before something on the casein issue that may be significant for celiac disease people The protein casein has a molecular structure almost identical to that of the wheat protein gluten. As out bodies often misread our cells as 'foreign' because of a similarity to the makeup of the gluten or...
  6. Claire
    Just don't let Med School spoil you! We all need every good doctor we can get and there are so few of them. Good, intelligient people go to college with the best of intentions and come out brain dead puppets with a prescription pad in their pocket. Sorry about that. too many bad experiences. As a matter of fact I wanted to be a doctor (first) or...
  7. Claire
    Every new bit of information helps. Thanks so much. I too am pleased with the thread. I think there are many people with celiac disease who don't realize the neurological implications. So many have serious GI stuff going on and have not experienced this other potentially disabling aspect of celiac disease. On the other hand there are so many people...
  8. Claire
    More info for Lizzy and, of course, for others who are interested) Excerpt: Gluten Sensitivity It has long been accepted that neurological disease can result as a complication of celiac disease, due to nutritional deficiency caused by malabsorption. What is NEW information is that neurological and neuromuscular disease may also be associated with...
  9. Claire
    Hi Lizzy, Just came upon this. Thought of you so will add it here. I already sent you one source. Celiac Disease and Gluten-Associated diseases. Open Original Shared Link This is a technical article for doctors. Give your doctor the info and tell him that being a doctor he will have access - or can obtain access - to the site. Make him feel Important...
  10. Claire
    Only 9 months. I have been fighting for a diagnosis for years - and years. I know what I don't have, if that is supposed to help. Still working on a definitive diagnosis. Getting closer. Might even get it my lifetime. Rule #1 - never go back to a doctor who laughs at you. Don't forget that you - or insurance you pay for - is paying him. Remind him if...
  11. Claire
    Lots of pain and misery accounted for here! Does anyone have silent migraines? I come from a family of migraine sufferers. All had the classic symptoms except my daughter who has the silent variety and now the neurologist is attributing one group of my symptoms to the silent migraine - apart from whatever is the final termination for the cause of...
  12. Claire
    You need months not weeks on gluten if you want to insure accuracy. It is a risky way to prove a point. There are other tests that do not require you to be gluten free - i.e. Enterolab stool sampe test and Kimball Labs - genetic testing. You do not get over celiac. The gut may heal and the antibodies disappear but you still have celiac. Eating gluten to...
  13. Claire
    I can give you another good reason. Cerebellar ataxia - a brain disorder effecting gait and balance - even swallowing and breathing eventually. This is one of the neurological side effects of gluten attacking neurons. Don't chance it. Claire
  14. Claire
    No ecperience with this at all but I do know that a connection is made in medical literature. Claire
  15. Claire
    Hi and welocme. I started this once, went to look for something and when I came back my post had vanished. Briefly I had said that GPs know a little bit about a lot of things but not much about anything. Specialists tend to look and diagnose within their own field - think neurologists here. It MUST be something they learned in school or saw on rounds....
  16. Claire
    Hi there - haven't seen you here for awhile. Some info below: Kytril: Manufactured by Roche. Gluten Free: Yes. Vegetarian: Yes. Verified: 10/26/04. Comments: No Roche products contain gluten as of this date as the company uses cornstarch. Phenergan Syrup w/codeine: Manufactured by ESI Lederle. Gluten Free: Unknown. Vegetarian: No. Verified: 11...
  17. Claire
    Doctors are wrong at least as often as they are right. In the interest of your health and that of your family you need to question medical opinion - and often. This is especially true if what your are being told doesn't make sense or conflicts with what you have heard or read elsewhere. Most everyone of this forum has at least one doctor horror story to tell...
  18. Claire
    I agree with George. The connection between most gastrointestinal diseases and gluten is not a secret known only to celiacs. It is commonly found in the literature - both medical and non-medical. Most doctos don't read either so it would help if writers, who have such an opportunity to educate, would do so. Claire
  19. Claire
    This is a reply to inquiry. Do not know where it is available. This is for the lucky ones who can eat dairy. Thank you for your enquiry. The gluten free products are our ice Cream range as listed below: 500ml & 1Lt Vanilla Ice Cream 1Lt Ultra Chocolate Ice Cream 1.85Lt French Vanilla Ice Cream Hoping this will assist you. Regards, Barbara...
  20. Claire
    Hi again Lindsay, If you have had a recent MRI that eliminates any neurological disorder caused by brain changes then that would eliminate one possibility I think I would go back to him again. I have had three neurologists in the last four months and they all have a different opinion! It sounds like you probably do have celiac. The symptoms differ so from...
  21. Claire
    Try out something else with a lime in it. This is something that gives me a reaction very similar to the reaction I would get if I ate a slice of bread. Speaking of L-glutamine: you can buy it separately - recommended at least 5 grams per day supplemented. Claire
  22. Claire
    The areas of the body affected definitely suggests dh. I have a friend whose husband has had this condition for many years so I saw it in the beginning. In his case it was not classic - no knees or elbows/ It started mildy and got worse - much worse. He has dozens of celiac symptoms but is not diagnosed - long sad story. There is a test for dh...
  23. Claire
    Hi there - welcome. I am quite new here myself though the two months since August have gone quickly. Neurological stuff can be intimidating but slow down, relax and take all this one step at a time. The GI fellow probably won't help much with the neuro symptoms you describe. Best to make an appt. with a neurologist (ask if he has any celiac patients). If...
  24. Claire
    Those who are having problems/issues regarding recovery may benefit from reading the article posted here. Altered Immunity & The Leaky Gut Syndrome Open Original Shared Link Reading the posts I can tell that many are looking at gluten as the ONLY problem. That probably is not the case. Once celiac disease has done some damage you are...
  25. Claire
    Regarding your daughter's condition. She may well be dying if she continues on the medication merry-go-round. One of these meds is bad enough - more than one is toxic and while they may mask symptoms - they do not cure. Worse than that, a body that is already stressed by illness does not need to be poisoned. First of all - get your daughter gluten free...
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