MistyRG

I was diagnosed in June, and I decided to get my oldest 2 kids tested. My daughter (5) has complained of stomach pains and issues for the past year. My son (9) has no issues. Ironically, her tests were all normal, but my son's tests came back abnormal.

Being new and not really doing anything but asking the pedi to run a celiac panel, I didn't know what they ran. (I can't find my lab slip to see what was run on me!) Here are his results . . .

Immunoglobulin A (IgA) <7 (normal is 33-202)
Endomysial IgA <1:10 (normal <1:10)
TTG IgA 1.1 (<4 negative)

His only abnormal test is the first one, which is really low. His pedi called a pedi GI specialist who said the low IgA will throw off the other 2 tests, and they asked her to run the IgG tests. So we are waiting on those results.

Everything I have read say that a low IgA can increase their chance of developing an autoimmune disorder, and since mom has Celiac, it's not a reach to figure that out!!

I am very anxiously waiting on the other results. I just wanted to see if anyone had more experience and information on this while I patiently wait!!!

Do you get retested to make sure you are healing your body after going gluten free?

I don't have a lot of symptoms or issues. Yet my biopsy came back "severely damaged." So I am wondering if my doctor should retest my blood work or something to make sure I am on the mend and not eating hidden gluten since I may not even know.

Anyone have an idea on this one?

Of the Celiac panel, 3 of my 5 tests were positive. Endoscopy is positve. So I have Celiac.

However, during the wait, I had my rash biopsied. It came back negative for DH but could be 4 other issues including lupus. So they ran an ANA test on me.

Negative is < 1:40
Mine was extremely positive at 1:640

I am out of town and can't see my doctor for a few more weeks. I am hoping this has something to do with Celiac, but I am now being referred to a rheumatologist for futher testing.

I'm hoping it's just Celiac related . . . otherwise I feel like I may be falling apart!!!!

I got the results back from my endoscopy, and I do have celiac. I am relieved that I wasn't crazy!! I am VERY thankful to have a great team of doctors that listened to me and ran the tests I requested without question!! I am extremely lucky that my diagnosis took only 2 months from rash to positive diagnosis (though rash is negative for DH! Go figure!!).

So I am officially here . . . and it really hasn't been as difficult as I thought it would be!!!

Oh . . . and I wake up feeling RESTED for the first time in years!!! I used to blame it on my kids . . . guess it was just the gluten!!!

While waiting for my endoscopy, I had 2 biopsies of my rash. Both came back negative. Actually, one came back with 4 other possible issues, and they ran some more labs.

But I don't believe it!!! The rash was the reason I started this "could I have celiac" journey. I do have a positive intestinal biopsy. So celiac is confirmed . . . I just can't see how this rash could be anything OTHER than DH!!!