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I've just started out in this forum - Blood tests are being done this week for Coeliac - Thank the Lord for the internet - otherwise I would still be go crazy with the horrible rash I've suffered with for about 9 mos. I'm sure everyone has their own horror stories.. but I actually had a dermatologist tell me it was excema and I had to learn to live with it. "sorry" he said. "Use this soap and only one shower a day" "It's dry skin - you're probably bathing too much" WHAT! Not good enough for me. Another Derm. office gave me prednisone which knocked it out for awhile - suspecting "nerves" - told me to take some time for myself while we were trying to see if it were a medical issue - biopsy came back with possible Lupus (blood tested-neg.) again - no real answers... then I found a site that described my rash perfectly - I have been gluten-free for 1 1/2 weeks and the rash is gone... almost no itching!! swelling has gone down in my body ( I was just so puffy!) no gas - no bloating - I just plain feel better! Everyone was looking at the symptoms and checking for possibles... Hepatitis, Hashimotos (my thyroid levels are a little off), one blood test and scare after another. Now i'm seeing that possibly my mood swings might be caused by this gluten intolerance! I've had this rash in a mild manner all my life (only on my hands and feet- and only occasional) I remember as a child a itchy rash on the tops of my feet - but of course it was always excema... !!!!! Obviously this is why my iron levels have been low for years.

Well - thanks for listening... I'm going to read more and try to absorb some knowledge. It looks like I'm joining your "club"!!


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Glad you found the reason for the mystery rash. Amazing what "healthy whole grain" foods can do to a body huh! Hope you start feeling better soon.


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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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