IgA Symptoms and Heredity - ADVOCATE

[MelB1975]

It's so frustrating to have to advocate so hard for this little understood disease!  After suffering for years, I finally landed on Celiac for myself.  My sister and niece have both been diagnosed.  Now, my 12  year old daughter is having all manner of GI symptoms and the bi-lateral rash.  I asked for the antibody panel, it was completed, and IgA came back at 265.  Doc said, "You can't really tell anything by that number."  Period.  I called the GI specialist office who confirmed, yes, especially in combination with her symptoms and heredity, she should be referred to them for further investigation.

Am I losing my mind, or was I right to pursue?  I hate second guessing myself …

[GFinDC]

You sound like you are on the right track.  By bilateral rash I assume you mean she has a rash on both elbows, knees, hands or other?  A symmetrical rash like that is typical of DH (dermatitis herpetiformis).  DH is a skin condition that only people with celiac disease get.  They test for DH by taking a skin biopsy from clear skin next to a lesion.  The biopsy sample is tested for IgA antibodies.  If she does have DH then she has celiac disease, no endoscopy to confirm is needed.

There is a section of this forum just for DH that has more information.

And welcome to the forum!

[MelB1975]

Yes, I'm referring to the symmetrical rash.  She's got it on both legs.  I had it and it was the WORST.  Thanks for the welcome.  I appreciate it!  And also, thanks for the confirmation. 

[cyclinglady]

I am confused.  She had a celiac antibody blood panel?  That would include an Immunoglobulin A (IgA) test that, if in the normal range (and your child’s result seems like it is based on national labs), would validate the celiac specific TTG, EMA and DGP IgA tests.  An IgA test by itself, would just indicate possible Immunoglobulin issues like an IgA deficiency which would mean your kid might be sick with every cold, etc. She is exposed to.  Know that those celiacs who have DH often fail the blood tests, yet they do have intestinal damage.  Make sure you actually had the celiac panel run (DGP, TTG and EMA).  Make sure that your kid has been consuming gluten a solid 8 to 12 weeks prior to the blood or skin biopsies (less time for intestinal biopsies).  If she is in a gluten light, the tests may be invalid.  (Not sure if you are gluten free and that could impact her tests.)

Getting a dermatologist to do the skin biopsy can be tricky.  If not done properly, you could be left in diagnostic limbo land.  Here is some information you can share with a dermatologist who might not be celiac/DH savvy:

https://celiac.org/about-celiac-disease/related-conditions/dermatitis-herpetiformis/

I encourage you to keep researching.  It is your best defense!