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Blood Test Results Just In, Please Help

Debbie B in MD

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Debbie B in MD Explorer
Debbie B in MD
Posted

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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adab8ca Enthusiast
adab8ca
Posted

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
ravenwoodglass
Posted

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
Debbie B in MD
Posted
  • Author

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
      Need Advice on Doctors

      By trents · Posted

      How long was your gluten challenge? I hope it was longer than a week. If not, your testing was likely invalid. Recently upgraded guidelines call for the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for at least two weeks prior to either the blood antibody test draw or the endoscopy/biopsy. And if you had been gluten free for all those years, you likely had lost any tolerance to gluten you may have had when consuming it regularly. That's probably why it was such a tough sledding experience. Before I was diagnosed, I had very minor GI symptoms. Now, after many years of being gluten free, I get violently ill for hours if I get a good slug of gluten, like when I got my wife's wheat biscuits mixed up with the gluten free ones she made me.
    • Jason Hi
      Need Advice on Doctors

      By Jason Hi · Posted

      "Commit in a serious way to the gluten-free diet"....I've been Gluten-free since 2008. That's why I was so sick and had to take nausea and bloating medications during the gluten challenge week prior to the upper gastrointestinal endoscopy performed by the gastroenterologist. The "younger" doctor (the internal medicine who did the blood test), said the antibodies should remain in your system and you don't have to eat gluten (i.e., blood test last year). Hence my posting on finding a good doctor.
    • trents
      Need Advice on Doctors

      By trents · Posted

      Well, the next step would logically be to commit in a serious way to the gluten-free diet and see if you have significant improvement in your symptoms. You should see improvement very soon with regard to GI issues and within weeks if there are other symptoms if gluten is indeed the issue. If there is significant improvement after going gluten free, that would tell you that you must avoid gluten and given the test results you already have, the logical conclusion is NCGS. As I said, an NCGS diagnosis is arrived at by first ruling out celiac disease, which seems to have been done. Then you could go back to that doctor with the other evidence component (improvement of symptoms with gluten-free eating) and ask if he/she would now be willing to declare an official dx of NCGS and give you a note. Or, you could book an appointment with another doctor who could look at your test results online, together with symptom improvement after going gluten-free, who might be more cooperative. I would seek out a younger practitioner as they are more likely to not be operating on outdated info about gluten disorders. By the way, NCGS is about 10x more common than celiac disease. 
    • Jason Hi
      Need Advice on Doctors

      By Jason Hi · Posted

      Thank you for clarifying the terminology. Based on what my doctor told me, I understand that I do not have celiac disease, but that I’m “likely gluten sensitive.” From what I’ve researched, that places me in the category of Non-Celiac Gluten Sensitivity (NCGS)—as you mentioned, the key difference is that with NCGS there are no damaged villi and no positive celiac-specific antibodies. Either way, my treatment is the same: follow a gluten-free diet to avoid feeling sick. My understanding is that there are three main issues related to gluten: 1. Celiac Disease (produces specific antibodies and damages the small bowel) 2. Wheat Allergy (an immune response to wheat proteins) 3. Non-Celiac Gluten Sensitivity (negative celiac tests but still symptomatic from gluten) Regarding tax breaks or workplace accommodations, I came across a statement from celiac.org (https://celiac.org/gluten-free-living/federal-benefits/tax-deductions/) indicating that having any formal diagnosis—celiac disease or non-celiac gluten sensitivity—plus a prescription from a physician is typically required to qualify. In my case, my goal is to avoid feeling sick and secure documentation for both work and potential tax benefits. If I do pursue further tests or get more detailed lab results, I’ll share those here to confirm whether the doctor is suggesting celiac disease or truly NCGS. But as of now, the doctor’s comments lead me to believe I fall under NCGS.
    • trents
      Need Advice on Doctors

      By trents · Posted

      Welcome to the forum, @Jason Hi! First, we need to deal with some squishy terminology. There are two terms which are, unfortunately, used interchangeably and indiscriminately to refer to two different gluten-related disorders. The two terms are "gluten sensitive" and "gluten intolerant". Because these terms are used carelessly we are not certain what you mean when you say your doctor told you that your are likely "gluten sensitive". The actual medical terms for these two gluten disorders are: "celiac disease" and "Non Celiac Gluten Sensitivity" or NCGS for short. The test you had run by the GI doc are intended to check for celiac disease. There is no test for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out.  Because these terms are used by many people interchangeably I'm not sure that your doctor, after running the tests, was intending for you to understand that he believes you have celiac disease or NCGS. So, to clear up the confusion, can you post the results of your blood test, not just the test scores but the reference ranges used by the lab analyzing the blood sample to determine negative/positive or normal/high? The difference between celiac disease and NCGS is that celiac disease damages the lining of the small bowel over time whereas NCGS does not. However, they may share many of the same gastro intestinal symptoms. Both need to be addressed with a gluten free diet but the tax breaks and work place accommodations you speak of would likely only accrue from an official celiac disease diagnosis. So, can you post the blood test results along with the reference ranges and also the endoscopy report. We can help you decipher whether or not the doc was suggesting you may have celiac disease or NCGS if you will do that.
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