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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
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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