Test results. Nine year old.

[Ridgeback]

Hello- celiac runs in my family. I'm starting to wonder about my nine year old. I got him tested. I feel like every test proves negative but I have this feeling he is a celiac. No digestive issues, yet. Will you look at his test results and give me your opinion?

[Ridgeback]

More tests

[cyclinglady]

The blood test results are negative (and he had the complete panel).  No GI issues (per your posting).  What makes you suspect celiac disease?  

[Ridgeback]

He has a rash on his fingers from time to time. Angular Chetelis. Mouth sores. So skinny. Anxious. 

[ironictruth]

I tested positive to deamidated gliadin in August at a hospital. My old GI tested me using gliadin (the test listed on your result) in September and it was negative. Literally the next day, my new GI tested for deamidated gliadin again and it was positive (I was unaware the hospital scheduled an appointment with the new GI for follow up).

 If you still suspect it, Google deamidated gliadin, print out the Mayo clinic lab info and circle the part where it says they have discontinued the use of gliadin in favor of the deamidated gliadin. 

Has he seen a dermatologist?

[Ridgeback]

I have not taken him to a dermatologist. I have dapsone, which I put on the rash, it always clears up. I have it for another family member. But then I started reading about celiac and all these dots are out there but not connected.  The next time he has the bumps, I am going to take him in. In the mean time, I am trying to find a dermatologist who understands the condition. I don't want my kid to have celiac. And I kinda feel crazy for thinking he may have a gluten issue but with it in my family and him having these other things, I want to be dilligent.

 

i will read up on the test you suggested. Thanks for taking the time to read and respond everyone. 

 

[cyclinglady]

Those could be celiac symptoms or they could be something else.  Just because celiac runs in your family, I would not jump to conclusions.  That could be dangerous!   For example, my niece presented with celiac disease symptoms.  She tested negative but they found that she has Crohn's (not that she can't ever develop celiac disease).  While a gluten free diet could not hurt her, it is not the cause of her Crohn's flare-ups.  

 I would not worry about his weight unless he is no longer on the growth charts.   There could be more related to his anxiety issues too.

i would NOT recommend sharing prescriptions, especially on a 9 year old!  Dapsone is some pretty evil medication that can do some serious liver damage (but if you have DH or  leporisy, it might be worth the risk -- but I would think not for kids).  For DH, sticking to a gluten-free diet  is much preferred, but I will let one of our members who has DH comment on that.  

Those with DH often do not test positive in blood work.  Best to get a skin biopsy (tricky on DH so read up).

Please find a dermatologist  and/or a Ped GI who is celiac savvy.  

 

[Ridgeback]

Thank so for your words. I have taken your advice to heart. 

[squirmingitch]

Read a WHOLE lot of threads in the dh section. There is a specific way to biopsy for dh & 95% of the time the derm does it wrong. There's a lot to be learned there. He has to keep eating gluten even for the dh biopsy.