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kareng

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Everything posted by kareng

  1. Looking at the U of C Celiac Center site - it doesn't look like you will be taking the Dapsone for "long term". Also, it isn't usually on the face - so that could be something different, Open Original Shared Link Dermatitis herpetiformis (DH) is an itchy, blistering skin condition that is a form of celiac disease. The rash usually occurs on the...
  2. If it is this debilitating, you must have been to a few doctors about it? What did the dentist say about the jaw? Is it out of alignment in some way? Did he think you have TMJ and need a night guard? Braces to get your bit corrected? What did the other doctors say? They are really in a better place to evaluate the issue than we are. If its not...
  3. Yes. I have even found it at walmart, too.
  4. Signature- "4/94 Got IBS Dx--- 10/13 Hospitalized for GI bleeding -- 10/13 Flunked serology (badly, like 500x over normal for self antibody) -- 11/13 failed visual endoscopy but passed serology (WTF) started eating gluten-free-- 12/13 flunked Genetics and got Dx -- 04/14 flunked serology by 50% over limit, and got a talking to by the Doc saying I need...
  5. Fortunately, in the US, modified food starch, yeast extract, caramel color & MSG do not contain gluten. On the rare occasion MFS is made from wheat, it will say something like MFS ( wheat) or modified wheat food starch. Of course, malt contains gluten.
  6. I am a little confused - are you diagnosed as a Celiac or not. It's a bit unclear to me on the signature. Sounds like you had a negative biopsy? Negative for Celiac genes? Not sure what a " self- antibody is"? That's not important to the question - Obviously,diarrhea can get germs into your urinary tract and other parts in that general direction...
  7. You have a hospital with a gluten-free menu that is really gluten-free? That is amazing!
  8. If you think you have a problem with soy, why not eat some pure soy and nothing else? See if it bothers you.
  9. While I do appreciate your enthusiasm, one instance of gluten should not cause you to " flunk your next serology". It can take months or a year to get your antibody levels all the way down. 1 instance of glutening should not be enough to raise your blood antibodies if you are otherwise gluten-free.
  10. What did the vegetarian zombie eat? Graaaaaaaaains!
  11. In a person with Celiac - maybe. But he has been eating gluten for many years without this " symptom" so it's more likely to be a heart problem, virus, food poisoning, etc.
  12. From my point of view- she is doing a bad job. She should never have had you go gluten-free without ordering legitimate blood work to see if you actually have Celiac. That is just good plastic patient care. I think this is a big problem with going with non- medical people for your medical care.
  13. I don't want you to get stuck paying. Are you in Georgia? I am sure what the doc wants to do isn't quite legit in the US . Get another doctor. Have the lab send the new doc the results. They keep the results for a few years. - 7 years at least.
  14. THen that is just them being being pissy. Tell them there is no reason to re- do and charge you or insurance for the tests. Or get another doctor. Adding - do you have insurance now? This might be something to make them aware of. It's being done to make money, not for patient care.
  15. They check the serum IGA to see if you are one of the 10%? Of humans that don't make enough. It is just used to validate the IGA tests. But... None of the tests are really valid if you were gluten free "for quite some time". Not sure what the doctor is basing the recommendation on?
  16. And he wouldn't accept them if another doctor had me run? I understand if he won't let you hand him a paper with stuff on it.... But what if the lab sent the results to him? You could request that.
  17. What was the range on the TTG IGA? But if that is negative, it's just what you would expect on a gluten-free diet.
  18. Its OK to use them even if they had gluten. You have to ingest gluten to cause a Celiac reaction. So... wash your hands after. Usually, if they contain gluten it will list something like wheat germ oil - its pretty obvious. Even if the odd chemical started as wheat, it is usually so highly processed, it doesn't contain gluten and is a very very tiny...
  19. I am sorry your " naturopath" didn't get you tested for celiac before taking you off gluten. One exposure does not take you back to square one according to MDs that treat and study Celiac. Open Original Shared Link "Follow-up tests are intended to test whether there’s significant (and repeated) exposure to gluten. A mistake (or two) may cause symptoms, ...
  20. I do not see a single mention that anything other than gluten causes DH on the U of C site.
  21. When they said " safe" they meant gluten free. Also, that was from 3 years ago.
  22. So.... You don't really know if you have DH? It was never biopsied? Then, maybe it isn't DH and it something else.
  23. Maybe you have an allergy to these other foods that causes a rash? Or adds a rash on top of the existing DH? Now that sounds pleasant.....
  24. What I am trying to say is - don't go by "opinions" go by some scientific/medical data. Hopefully, you have found someone who can help you, not just try to sell you supplements.
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