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If Your Child Is Still Having Symptoms Keep Looking


Virgie

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Virgie Apprentice

Hi! Not trying to scare anyone here but my 13 year old daughter was dx in 9/07 with Celiac and did not seem to be responding to the diet. We were very strict & watched cross contamination & even changed the cat's food but she still had symptoms. Last month we visited a dietian at Mayo and had blood draws & stool testing done & was recommended to go dairy free for awhile to see if that helped. It still did not help as she still had lots of diarreha. So back to Mayo on Monday the 28th for endoscopy & colonoscopy. Well good news bad news. Endo showed real improvement so the diet is working, bad news is that she has Ulcerative Colitis. Her older brother has this too so maybe no big suprise there.

So I guess moral of this story is that sometimes it could be something else and not it is because of Celiac & that they have been accidentally glutened. Even her GI thought that maybe she had refractory celiac and wasn't thinking about UC. So it did kind of surprise him too.

I guess you never know sometimes but if you as a parent feel that something still is not right keep searching!!!

Take care all!!

Virgie

son 18 UC, EE, IBS, Asthma daughter 13 Celiac & UC

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skikat Apprentice

Thank you for your supportive and encouraging words! We should always listen to our "gut"....ha ha Don't give up, and do not get disouraged. We are all warriors in this battle!

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shan Contributor

At least i now know that maybe i might be right in my guesses for my daughter!! She is three and has been gluten free for 11 months and i am one of those cray, paranoid type... the one that has made my dd so scared of gluten she now uses it as an excuse not to tidy up her toys!!!

Anyway, she grew and put on weight, her mood changed, but her bloated stayed, so we went back to have her celiac blood panel again and her numbers had gone up. After crying we decided to see what was the matter and what else it could mean, and all we have come up with is the same old story "it is your fault, you must be feeding her wrong!"

So your story shows that celiac shouldnt be blamed on everything, so i am gonna fight this till we find an answer :D

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    • B1rdL0ver
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      Fermentation breaks down some of the gluten in wheat. Nowhere enough for a wheat dough to become gluten free, but the gluten may be significantly reduced. I think some pizzerias make the dough the day before and leave it overnight. The longer the microbes are acting on the flour, the better.
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      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
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      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
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