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Virgie

If Your Child Is Still Having Symptoms Keep Looking

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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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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!


Son- 1 y.o. - Active gluten sensitivity (enterolab results 12/07) and two celiac genes found.

Gluten-free/Casein free since 11/07- Positive Results

Negative bloodwork on Celiac panel

Dtr- 3 y.o. IGg blood-test pending for 150 different food sensitivities

Spouse- Active gluten sensitivity and Active Casein sensitivity(enterolab results 1/08)

gluten-free/CF since 1/08- Positive results

Negative bloodwork on Celiac panel

Me- Just crazy and playing detective everyday

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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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