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Blood Test Results Just In, Please Help


Debbie B in MD

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Debbie B in MD Explorer

My 15 yo dd just received blood test results. We are waiting for a referral to a GI doc, but of course, I can't wait for info. She has juvenile rheumatoid arthritis in remission and Hashimoto's thyroiditis. I am gluten intolerant, but I have not been tested for celiacs because I have been gluten-free for a while. I asked to have Elizabeth tested becasue of her other autoimmune issues and my gluten-issues. She is currently symptom free of celiac except for occasional constipation. Test results are as follows:

IGA, serum 142, reference range 57-300 mg/dL

Gliadin AB (IGA) >100 U/mL , reference range <11 U/ml

Tissue Transglutminase AB IGA >100 U/ml H, reference range <5 U/mL

With this information, what do you think? Does she have celiac disease or may just gluten intolerant? I am afraid that with her other autoimmune issues, she has celiac disease. I know the approach is the same: gluten-free, but I worry about damage and any other further implicaitons there may be.

I would really appreciate your input.

Thanks so much,

Debbie


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Hi Debbie

Good for you to get her tested!!!

It isn't what you want to hear, but I am saying yeah, she has celiac. THose results look to be really high and from what I ahve read, the chance of flase positives that high is exceedingly rare. That being said, I do not know what concurrent autoimmune diseases may cause to happen to those results, but my TTG was >200 and when I had my endoscopy, the Dr said I had total villous atrophy.

What does the Dr. say? At least catching it before she has terrible symptoms is good news. I was 42 when I was diagnosed but Dr figured I have had it since forever with no symptoms...

Ada

ravenwoodglass Mentor

Yea those were strong positive results. While the diet may seem daunting you may find she gets some relief from the other autoimmune issues when she has been gluten free for a while. If she is getting the endo don't take her gluten free until that is done. She definately will benefit from the gluten free diet once all testing is finished.

Debbie B in MD Explorer

Thank you both for your responses. I was thinking that would be the thinking on these numbers. Her first thougths were, "What about college?" University of Maryland at College Park is her first choice (not for 2 years, but she is a planner). I spoke with the head dietician today and she was wonderful. She even answered her own phone. She said that they have many gluten-free choice, all clearly marked in the dining venues. She meets with the new celiac students at the beginning of the fall semester for a tour of the dining facilities and for the students to meet the staff. This has definitely helped the day turn more positive.

It is going to be an adventure. I assured her that I will become the best gluten-free cook there is and I will teach her everything.

Thanks again.

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    • trents
      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
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