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Son Celiac For 3 Years Iga Increasing

GDLions

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GDLions Rookie
GDLions
Posted

My two boys were diagnosed with Celiac 3 years ago. My 3rd grader's IgA levels were slow to come down after going gluten free. The first year he had an IgA of 28, a year later it was 18, six months later 14, and six months after that 9. He just had another test and it came back at 38. We are on a strict gluten-free diet, there is no gluten in the house since 3 of us have Celiac. We go out to eat maybe once every two months, if that. I make all our baked goods at home using certified gluten-free ingredients, the only processed foods we use are certified or when I call the company they state the product is gluten-free. The other two's (one of which is a first grader at the same school) numbers have continued to decrease and have been 5 or lower for the past two years. This is my anal child, he always washes his hands at school, makes sure his food and hands never touch the lunch tables, and doesn't put his hands in his mouth.  I have met with the school nurse, teachers, and principal.  We keep his supplies separate, after art he always washes his hands just in case. This is the only environment I can't control. One thing that makes it difficult is he is asymptomatic, which is definitely a good thing, but kind of bad here.

 

We use gluten free lotion, toothpaste, soaps and shampoos, sun screens, laundry detergent, dishwasher soap, i verify that any prescriptions he is given are gluten free, chapstick, etc. I am the crazy one sitting on the floor of the grocery store calling companies to verify products are gluten-free. I could be missing something somewhere, but I can't figure out where. About the only thing I haven't verified that he uses are Band Aids (rarely used), and tape. But he always washes his hands after tape or glue use.  

 

Has anyone else had this happen? Could he be getting contamination from school? Is there something else going on? Bad blood test (my other son's test was done at the same time and same place and he is at 4)? Any ideas? 

 

Thanks for your thoughts. 

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StephanieL Enthusiast
StephanieL
Posted

If it's just one test, I wouldn't get overly crazy, yet.  Were the labs done at the same lab by the same company? They didn't change who does the testing or which brand of testing medium they use?  I would think it was lab error if you are reasonably certain that he isn't sneaking/getting into anything.  I would try and redo the test in maybe 3-6 months and see how things look.  I would want to see a trend (3+ elevations) before I would freak out.  

Is it easy as a Mom NOT to freak?  Nope. Not at all :( I'm sorry you are dealing with this.  FWIW, I chased and chased and chased down answers.  Flew to the best of the best and still haven't gotten any answers on elevated labs after 5+ year of gluten-free living. 

Onepercenter Rookie
Onepercenter
Posted

Hello. I myself have had a similar issue. My GI doc and I believe my problem was oats. And yes, all of the oats I ate were certified gluten-free. Upon diagnosis, age 40, (Iga was 58) I began eating a lot of gluten-free oat products. Three months post diagnosis, my Iga number doubled (Iga 121). No one could understand why, and questioned how compliant I was with the diet, which was extremely frustrating. A year post diagnosis, after enduring numerous tests, doctors not knowing what else to do, and still not feeling great, I decided to see an allergist out of semi desperation. I tested positive for oat allergy. Two months after being oat (and gluten) free and my Iga numbers fell to almost normal (Iga 26). My GI doc feels that I am an extremely sensitive celiac. In his estimation, oats cannot be guaranteed to be gluten-free because of pollination. He feels that the gluten-free threshold of 20 ppm may not be sufficient for me to not have a reaction.

greenbeanie Enthusiast
greenbeanie
Posted

Sorry you're going through this, and I hope you get to the bottom of it soon! Some kids may just be more sensitive to trace amounts than others. A similar thing happened with my daughter (who's now 6), and we ended up finally getting her tTG down by eliminating several certified gluten-free flours that I was using to bake from scratch. I'll avoid repeating all the details, but the relevant threads are here:

https://www.celiac.com/forums/topic/111191-any-scientific-evidence-than-less-than-20ppm-can-cause-ttg-rise/

https://www.celiac.com/forums/topic/111969-daughters-ttg-finally-normal/

I do want to note that this was an unusual situation, and most celiacs seem to be fine with occasional tiny amounts of trace gluten below 20ppm. We're hoping for another normal test this winter, which would be 6 months of normalcy, and after that we'll probably try reintroducing the certified gluten-free flours to see if she can tolerate them now. If her tests staryed normal for an additional 6 months the plan is to try gluten-free oats...but we're still a long way from that point. Anyhow, it was very frustrating when I KNEW we were not missing any gluten, and nothing had changed at school, and her tTG just wouldn't go down. When I finally figured out it was the gluten-free flours and eliminated them, it dropped to normal in less than two months! We were thrilled, and all her doctors were amazed. Again, it's probably a minority of celiacs who have this problem...but if all else fails, completely stopping all baking (even from scratch with certified ingredients in an entirely gluten-free house) is worth a try. Good luck!

GDLions Rookie
GDLions
Posted
  • Author

Thanks for everyone's insight. We are going to the pedi GI today.  I meticulously went through everything we eat and we did change gluten-free flours about 8 months ago, started a few things that are gluten free (verified with the company that it is a gluten-free facility) but not certified, and started eating a new gluten-free ice cream that is produced in a shared facility. I am usually the litmus test since I am hyper sensitive, but maybe that is not the case anymore.  We will see what the doctor suggests today.  

 

GDLions Rookie
GDLions
Posted
  • Author

Sorry you're going through this, and I hope you get to the bottom of it soon! Some kids may just be more sensitive to trace amounts than others. A similar thing happened with my daughter (who's now 6), and we ended up finally getting her tTG down by eliminating several certified GF flours that I was using to bake from scratch. I'll avoid repeating all the details, but the relevant threads are here:



https://www.celiac.com/forums/topic/111191-any-scientific-evidence-than-less-than-20ppm-can-cause-ttg-rise/

https://www.celiac.com/forums/topic/111969-daughters-ttg-finally-normal/

I do want to note that this was an unusual situation, and most celiacs seem to be fine with occasional tiny amounts of trace gluten below 20ppm. We're hoping for another normal test this winter, which would be 6 months of normalcy, and after that we'll probably try reintroducing the certified GF flours to see if she can tolerate them now. If her tests staryed normal for an additional 6 months the plan is to try GF oats...but we're still a long way from that point. Anyhow, it was very frustrating when I KNEW we were not missing any gluten, and nothing had changed at school, and her tTG just wouldn't go down. When I finally figured out it was the GF flours and eliminated them, it dropped to normal in less than two months! We were thrilled, and all her doctors were amazed. Again, it's probably a minority of celiacs who have this problem...but if all else fails, completely stopping all baking (even from scratch with certified ingredients in an entirely GF house) is worth a try. Good luck!

Thanks for the articles and older posts, those were very informative. Gets a bit frustrating when you are doing everything possible and it's not working.  Oh well, I guess we will get it right one of these days :)  I am glad she is doing better! 

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