Daughter: IgA levels won't go down

[JenLN]

Hi,

I have a 14yo daughter who was diagnosed with Celiac in January of 2017. She never had a symptom. This all began with her pediatrician noticing she was not growing. Long story short she is very compliant with her gluten-free diet. She asks tons of questions when out to dinner, uses her find me gluten-free app and reads labels. I cook gluten-free at home although we do have items with gluten for other family members. Despite all of this her IgA levels are not coming down . This past level actually increased by one point. I have not mentioned this to her yet as I know she will be devastated. Her MD will want to scope her again. Has anyone gone through this ? We can't figure out where the breakdown is. The good news is she is growing and gaining weight. I know the blood levels are not definitive which is why we are having another endoscopy. It's just frustrating especially for a 14 yo !

[tessa25]

By IgA do you mean TTG IGA?

[cyclinglady]

I would recommend two different paths.  Either follow the Fasano diet for a few months and the remeasure her antibodies or   repeat the endoscopy.  She may very well have healed.  I had very elevated DGP IgA antibodies last year and tried the Fasano diet.  I still was having some symptoms and my antibodies were not coming down.  I had a repeat endoscopy and it revealed a healed small intestine.  My GI does not have an answer, but did find another Autoimmune issue that may be impacting my antibodies results.  My research has indicated that while the celiac tests have been developed for diagnostic purposes, they were not designed for dietary compliance.  However, they are the only “tool in the tool box” for now.   In any case, I stopped beating myself up!  I was diet compliant!  

 What I realized is that there is a spectrum of celiacs.  Not all celiacs can handle 20 ppm. Maybe they can when they are completely healed.  Who knows,  because there has not been enough research on the subject.  I can tell you that I do not eat out.  When I do, it is at a 100% dedicated restaurant.  I just do not take risks anymore.  It just is not worth it as my glutenings tend to be severe and trigger my other autoimmune issues.  

She sounds like she is thriving.  Maybe the endoscopy is the best path.  You will know exactly if she is dietary compliant or not.  I am glad I had my repeat endoscopy.  

Keep us posted.  Your input can help others in the future.  ?

[Posterboy]

JenLN,

Here is a thread that might help you.

https://www.celiac.com/forums/topic/100403-can-a-person-have-a-positive-ttg-blood-test-for-no-reason/

You might also try eliminating Dairy and Soy at least for 30 days to see if she feels better.

According the UChicago page they also can cause Villious Atrophy and these food allergies are common in Celiac's

http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

For the not growing part if she doesn't take off soon have them check her thyroid.

  On 9/13/2018 at 1:07 PM, JenLN said:

This all began with her pediatrician noticing she was not growing.

Expand Quote  

The thyroid can effect growth in kids and thyroid problems do happen in Celiac's.

Here is a couple links about both.

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/thyroid-pancreatic-disorders-and-celiac-disease/connection-found-between-celiac-disease-and-hashimoto039s-thyroiditis-r1118/

I am shorter than my brothers I believe because my undiagnosed Celiac disease was not caught soon enough!  At least you are aware and  are addressing the issues the best you can!

https://www.emedicinehealth.com/growth_failure_in_children/article_em.htm

Lastly if she has had tonsil problems like tonisittis or horrible mouth sores you might want to have her tested for Epstein-Barr Virus (aka Mononucleosis) it has been shown to also elevate Ttg levels (though considered rare) it is worth exploring.

Here is a an article on it entitled "Anti-transglutaminase antibodies in non-coeliac children suffering from infectious diseases"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2810390/

If she has mouth ulcers you might try some B-12 too it has been shown to help some people with mouth sores.  Also sublingual tablets are best because if her stomach acid is low she might not be able to absorb pills with B-12 in them well because your body needs in the stomach intrinsic factor also too to absorb B-12 in the body but can be absorbed under the tongue sublingually avoiding the stomach all together.

Here is a case study on it entitled "Case Report: Recurrent aphthous stomatitis responds to vitamin B12 treatment"

and Mouth Ulcers are common in people with EBV infections and EBV can elevate Ttg levels.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1479540/

These are some of the things that I would look into if going gluten free alone doesn't help.

Good luck and God speed as you seek to find out what is still bothering your daughter.

Keep at it! Be your daughter's own advocate. . . I wish I knew some of these things when I was a kid.

I hope this is helpful but it is not medical advice.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posteboy by the grace of God,