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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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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:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

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!  

Edited by cyclinglady

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