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Noomers

Very Confused

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I was diagnosed with celiac just two weeks ago. I had very few symptoms. I had my 2.5yo son tested since he has all the symptoms (diarrhea, low BMI, irritability, chronic loose stools (sometimes grey ones). His test results came back today and they are very much negative. So now what? Is he too young to get an accurate test?

What confuses me more is that since the whole family started a gluten-free diet 4 days ago, his moodiness has improved somewhat and he had a semi-normal bowel movement. I'm truly shocked that he didn't test positive and I did.

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Testing is notoriously unreliable in young children. False negatives abound.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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I agree with Peter. If you want to take it further you could consult with a gi and get the EGD and biopsy. You can have negative blood work and positive biopsy, but biopsy can produce false negatives too. Or if you are comfortable with putting her gluten free without a dr. diagnosis then go for it. I don't have a doctor diagnosis for my 6 year old son, but I do have a signed letter from his allergist to avoid wheat, rye, barley and all gluten containing ingredients that I sent to the school and that was sufficient for the school. But I know a lot of people say getting a diagnosis makes it easier when they are in school.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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Thanks for the replies.

I am wondering if it's best to get a biopsy (which would have to be ASAP) or just self-diagnose. I am switching the whole house to gluten-free because of me which will make further testing later on in life next to impossible, right?

I'm waiting for a call from our doctor.

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