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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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      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
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