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flightgoddess

Dissappointed-Test Resuslts Negative, But Obvious Symptoms!

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My 3 year old has been gluten free since before birth, since I am gluten free. My sister is diagnose celiac, I was tested but it was negative, I carry the gene, and since I tried for months to find any other cause for my fatigue without result, I went gluten free to try it and felt a million times better. So, when I was breastfeeding her, I accidentally ate something with gluten, and she got diarreaha. Once she got to table food, she tried some gluten, and got diarreaha. The pediatrician and I ageed to avoid more gluten. This summer, we did a gluten challenge with her, I want some kind of diagnosis for upcoming public preschool and kinder,etc. She had rotating constipation and diarreaha all summer, and the poor thing would say 'My tummy is angry' when she had to poop.

 

At our visit, the gastro dr sounded optimistic my child would have some kind of result, given family history and symptoms. Well, her tests came back in 'normal range' And I pushed for the IgG and IgA to cover all the bases.

 

So, what next? Dr said biopsy isn't necessary since results are normal. I want my child to go back to gluten free becuase she had zero bowel issues then.  My pediatrician is ok with using a 'non-celiac gluten sensativity' on any school papers I need, but that diagnosis doesn't have and legal/federal support. I guess I should just hope for supportive teachers and be that really annoying parent? (They eat a very gluten-full breakfast and snack in their classrooms everyday in our public schools, I just worry about busy teachers not having time to clean tables and stuff, which would be mandated by a 504 if she qualified)

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Can you get your ped to write a 'script' for the 504 plan that stresses the need for gluten avoidance? I could be wrong but if your doctor specifies that your child needs to be kept safe from CC the school may comply with the demand. You could also try getting a second opinion from a different ped GI.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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There is diagnosis called gluten sensitivity celiac disease. I have this and do not have the gene for celiac disease. Only positive test was a high IgG level. (Diagnosis because of a small bowel follow through that showed damage to my small intestine). Cannot tolerate gluten, get very ill if I happen to eat any. 

Edited by sjb

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Believe me, no preschool teacher wants to deal with D if it can be avoided by something as simple as providing gluten free alternatives... You may need to send in gluten-free bread and crackers for your child,  and possibly play dough, but if you are not able to get a 504plan, try working with the school's administration, teachers, assistants, and nurses to educate them and give them solutions. If you send in alternatives and ask staff to make sure your child washes hands frequently and meal tables are wiped down well that should do it... As long as your child doesn't try someone else's snack or taste something they shouldn't. Sometimes just explaining that you know the problem exists and that a formal diagnosis has not yet been obtained still gets cooperation.  That's the way it works in the preschool where I teach anyway. 

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