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Test results.

Aine

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Aine Newbie
Aine
Posted

My blood test IgA came back as 28. I was told that anything over 10 was positive.  I went gluten free immediately.  Three weeks later I had a biopsy done.  The Doctor informed me after it that the intestine showed 'Duodenal Erythema, likely caused by Celiac disease'.  However, the biopsy came back as 'inconclusive'.  My GP decided that with these results (and the fact, I have other autoimmune diseases) to treat it as a positive diagnoses of Celiac.  Six months later, I continued to have severe diarrhoea and went to see a different Gastroenterologist.  He said that I was borderline Celiac from all the results.  What does this mean...do I have the disease or not.  I really struggle with the diet and if I don't need to be on it I would much prefer not to be!  I would really appreciate some input!  This second doctor performed a colonoscopy and I am waiting for the results.  They want to rule out microscopic colitis, which I have read can occur with Celiac disease.

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cyclinglady Grand Master
cyclinglady
Posted
2 hours ago, Aine said:

My blood test IgA came back as 28. I was told that anything over 10 was positive.  I went gluten free immediately.  Three weeks later I had a biopsy done.  The Doctor informed me after it that the intestine showed 'Duodenal Erythema, likely caused by Celiac disease'.  However, the biopsy came back as 'inconclusive'.  My GP decided that with these results (and the fact, I have other autoimmune diseases) to treat it as a positive diagnoses of Celiac.  Six months later, I continued to have severe diarrhoea and went to see a different Gastroenterologist.  He said that I was borderline Celiac from all the results.  What does this mean...do I have the disease or not.  I really struggle with the diet and if I don't need to be on it I would much prefer not to be!  I would really appreciate some input!  This second doctor performed a colonoscopy and I am waiting for the results.  They want to rule out microscopic colitis, which I have read can occur with Celiac disease.

Welcome!  

I am so sorry that you were woefully misinformed as to when to start eating a gluten free diet prior to obtaining biopsies (did they take more than four and from recommended areas?  Get copies of all your results in writing).     I sure hope you were not advised by your GI to do so (if so, ditch this doctor).  Antibodies and intestinal healing can occur in less than two weeks in some individuals while others can take months or years!  You just can not tell how you will respond.  

All celiac testing (blood and biopsies) require you to be on a daily full gluten diet.  

So, what to do now?  I would go with your wise GP.  Stay on the gluten free diet.  Get a follow-up celiac antibodies test to see if they are on a downward trend.  Ask for the FULL panel (include the EMA and DGP). While elevated TTG levels can be due other autoimmune issues, your result is high (twice the limit).  Another reason to get the full panel.  Bring this to you GI or GP to insure you get proper follow-up support:

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Know that is takes more than a year for most celiacs (as forum members report and not textbooks) to feel well.  Why?  It takes time for antibodies to come down.  Meanwhile they maybe systemically wreaking havoc on your body.  The gluten free diet has an enourmous learning curve (lots of mistakes and setbacks).  It is hard to manage a new diet when you are sick.  I do not know about you, but my brain is not up to speed when my celiac disease is active — just ask my family!  

Yes, you can have other issues going on like SIBO, Colitis, IBD, etc.   It is good that the GI is looking at your colon.  You can have another autoimmune disorder that has yet to be diagnosed, but let’s hope not.  Odds are, it is just celiac disease that is still active.  

Take a look at our NEWBIE 101 thread for tips located at the top of the “Coping” section.  It may help.  Keep us posted and stay in touch.  Emotional support is critical for good health and sometimes family and friends just do not get it!  

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    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I would only add that cross contamination with wheat may still be a possibility, so it's still best to seek out buckwheat that is labeled "gluten-free."
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