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Accidental Gluten-Ing, No Reaction?
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Hello, I am new to this forum so will provide a brief background. My 9 year old daughter was diagnosed with Type 1 diabetes in 2007 at the age of 4. I did a lot of research of course to learn the ropes, and learned that Type 1 kids are more susceptible to Celiac. My daughter had some symptoms of Celiac: her teeth (especially molars) had soft spots or ridges/discoloration; her blood sugar was almost impossible to control (I suspected malabsorption of glucose in the intestines); she had mild stomach aches fairly regularly; her bowel movements floated and tended to be oily; and she was not growing very well. My doctor at the time didn't see the need to test for Celiac but I pushed and finally got it ordered. The bloodwork came back positive (shocker!) and the subsequent biopsy was also deemed positive and showed flattened villi. We immediately began a gluten free diet (this was in 2008).

Fast forward 4 years, and I find that her blood sugar still tends to have wild unexpected swings. She still complains of stomach and also head aches and overall not feeling well fairly often. Her bowel movements have improved and her teeth still seem to have some issues. She is also still very small for her age. Every additional Celiac blood panel has shown levels below that of a person without Celiac (always attributed to our vigilance with the gluten free diet).

Recently she went to a 6 day overnight camp through the Canadian Diabetes Association. She was not the only Celiac kid there and I was assured that they had a strict gluten free diet. I found out upon her return that one of her counsellors was clearly misinformed and on several occasions provided my daughter with a snack of Stoned Wheat Thins crackers (clearly NOT gluten free!!) My daughter said she had no reaction whatsoever any of the times she ate them. My question is could she possibly have been misdiagnosed??? Should I speak to my doctor about possibly challenging the gluten-free diet for a short period of time and then doing follow up testing? I can accept the fact that she has Celiac disease if she truly does, but I would hate for her to spend a lifetime on a very restrictive diet unnecessarily. Also, she has had a much harder time accepting the Celiac diagnosis than she did accepting diabetes. And of course if it's not Celiac I would like to know so we can find out what it is.

Apologies for the length of this post. I would appreciate any advice!!! Thanks. :)

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She may not be having obvious reactions but I would be shocked if there was *no* reaction after a positive blood test and bx.

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No symptoms does not mean no reaction. Often the symptoms appear days later, or not at all (until the antibodies build up again over time.) Some people have immediate symptoms, some don't. Symptoms change over time and can even go away for months at a time ("honeymoon" period, typical in teens) It was once thought kids outgrew celiac because the symptoms would mysteriously disappear. We now know this is wrong.

If she is diagnosed with celiac and consumes gluten, the reaction will be triggered. You may see symptoms as a result - or you may not - but the reaction is taking place.

Cara

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My son has essentially no visible symptoms, so we have no idea when he's been glutened. He was anemic, which led to the celiac test (positive) and biopsy (positive), so we know he has celiac. If your daughter had a positive blood test and a positive biopsy, she has celiac. She just may not react visibly. It's both a blessing (no sick kids!) and a curse (hard to tell if glutening occurred). I would assume the diagnose was correct and keep on the gluten-free diet.

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    • The tests you provided can not provide any information pertaining to celiac disease.  You must be consuming gluten daily for 8 to 12 weeks in order for any of the celiac blood tests to work.  Only 2 to 4 weeks for the intestinal biopsy.  But both, yes, both are needed for a celiac diagnosis because many other things can cause intetinal villi damage.  Why isn't your doctor following the standard algorithm for diagnosis.  Does he even suspect celiac disease?   Got to head to school.  More later!  
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      I'm no doctor, and I know that the best thing to do is ask a doctor, but I'm quite sure that if I go for my biopsy appointment tomorrow my specialist would insist on me taking it, even if the other results are not back by then. I'm sure it's not a pleasant experience and would like to avoid going through with it unless it is necessary. 

      Also, I took my blood test after eating gluten for only 3 weeks (since that was a week ago), and if my blood tests result as negative, I'm thinking about trying to keep eating gluten for another 4 weeks and test again then... if that comes positive, I'll then want to have the biopsy test done.

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