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Test results. Nine year old.

Ridgeback

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Ridgeback Newbie
Ridgeback
Posted

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?IMG_5442.PNG

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Ridgeback Newbie
Ridgeback
Posted
  • Author

More tests

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cyclinglady Grand Master
cyclinglady
Posted

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 Newbie
Ridgeback
Posted
  • Author

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

ironictruth Proficient
ironictruth
Posted

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 Newbie
Ridgeback
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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.  

 

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Ridgeback Newbie
Ridgeback
Posted
  • Author

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

squirmingitch Veteran
squirmingitch
Posted

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.

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      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
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      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
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      Thank you. 
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      Inconclusive results

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