Strongly Positive Blood Tests, Inconclusive Biopsy?

[ancoon]

After years of intestinal symptoms and other health problems, I read an article about celiac disease and asked my doctor for the blood tests. I had the tests done, and was referred to a gastro. who said that the tests were strongly positive, and scheduled a biopsy to confirm. At his recommendation, I went gluten free for 2 months and my symptoms completely resolved. I resumed eating gluten for 1 week prior to the biopsy and felt terrible.

I had the biopsy, and the gastro. said that although my biopsy looked abnormal, it was not necessarily indicative of celiac disease. He said that it looked like there could have been only partial damage due to the fact that I had only had gluten for 1 week prior or 'focal celiac disease'? He wants me to remain on the gluten free diet and have the blood tests redone in September. He said that if the test showed improvement and my symptoms remained resolved, that he would feel comfortable with a final diagnosis of celiac.

Does this sound right? Can anything else cause positive celiac antibody tests? He said that the blood tests were very convincing... so why do we need to wait? I feel confused and just want closure.

Thank you!

[ravenwoodglass]

You have a good doctor, I hope you listen to him. It is unfortunate that they couldn't do the biopsy right after the positive blood tests. Your 2 months gluten-free and then just one week of a challenge is the most likely reason why your biopsies were inconclusive. Many doctors would want you to stay on gluten, no matter how sick it makes you and then redo the biopsy. Your doctor is doing it in a much better way IMHO, he is having you remain strictly gluten free and then he is going to retest and see if your antibody levels have dropped.

Stay strict on the diet and be thankful you have such a good doctor.

[Skylark]

Your doctor is being ultraconservative. To answer your question, anti-gliadin IgA can show up in normal people. Anti-tTG antibodies can show up in other conditions like rheumatoid arthritis. Anti-endomysial antibodies are pretty diagnostic for celiac disease, especially if you feel better off wheat. Your doctor wants to see the levels fall because that is pretty much proof that they were caused by gluten.

That's OK because you need to return and be sure your blood tests fall to normal and the diet is working anyway. I understand wanting closure but to be honest, you're in a much better place than a lot of the people around here. There are folks on this board who are extremely gluten-sensitive but have negative tests and would desperately love a formal diagnosis of celiac to show their skeptical families.

Your body has already given you all the answer you need with the diet working so well.

[ancoon]

Thank you both very much for your replies... it is so hard to sift through everything on my own! My Anti-endomysial antibodies were very high, and my primary concern was that there could be another disorder causing this that I should be looking into, but this does not seem to be the case. My family have been very supportive, but I felt strange saying that I have celiac if I did not have a conclusive biopsy. I will keep on with the diet and be grateful

[Skylark]

Glad to be of help.

This abstract might help a little.

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It is done by a famous Finnish celiac researcher named Markku Mäki. In it he shows that people with high anti-endomysial antibodies and a mild damage biopsy like yours go on to develop a fully celiac biopsy if they keep eating gluten. People who were in the group who didn't eat gluten had the antibodies go away and the mild damage reverse. His conclusion is: "Patients with endomysial antibodies benefit from a GFD regardless of the degree of enteropathy. The diagnostic criteria for celiac disease need re-evaluation: endomysial antibody positivity without atrophy belongs to the spectrum of genetic gluten intolerance, and warrants dietary treatment."

In other words, even though some doctors won't say you're celiac without a strongly positive biopsy, you are close enough that you need the gluten-free diet. You could even show this abstract to your family if it helps.

[Gemini]

Thank you both very much for your replies... it is so hard to sift through everything on my own! My Anti-endomysial antibodies were very high, and my primary concern was that there could be another disorder causing this that I should be looking into, but this does not seem to be the case. My family have been very supportive, but I felt strange saying that I have celiac if I did not have a conclusive biopsy. I will keep on with the diet and be grateful

A positive blood test, especially one with a positive EMA, is a diagnosis for Celiac Disease. At this point, the only reason to do a biopsy is if you want to see how much damage has been done. I still have trouble wondering why it takes so long for some doctors to become convinced that a person has Celiac Disease. Your blood work, coupled with the dietary response, is as good a diagnosis as they get.

Now you can get on with the job of a return to good health!