Getting Confused - Need A Little Help With Tests

[zimmer]

This site is so helpful.... thanks in advance! I do not have severe symptoms all the time, but bouts with the big D several times a year, and some of the more minor symptoms that I have read about.

My PCP had a "Celiac Disease Evaluation" done based on my medical history, not on current symptoms which have been nearly absent.

Results are:

IgA Total Serum 182.4 (ref range 66-436)

Tissue Transglutaminase IgA Ab 31 (positive is > 15 u / ml)

Gliadin IgG Antibodies 17 (positive > 15 u / ml)

Gliadin IgA Antibodies 18 (positive > 15 u / ml)

Predictably, he sent me to my GI who, predictably, said I needed the biopsy to confirm. He said if it's negative, then you don't have it and the blood results were false-positive. I challenged him slightly on that statement, and his face got a little red, and he repeated his recommendation. He even seemed to question why my PCP ordered the tests to begin with.

My oldest daughter has tested positive, also, and has had slight symptoms. DD #2 is occasionally symptomatic, and we get her results today. I expect positive for her, and I have 2 other children will be tested soon, too.

My question is, do these tests give me enough evidence, so that further tests are unnecessary? Or what else should I do? If I follow their protocol, then there are potentially FIVE of us, including a 6 & 4 yr old, who would go through the biopsy.

Again thanks in advance for your help and invaluable knowledge!

[ravenwoodglass]

If you can I would suggest you go to a different GI doctor who knows more about celiac. You have clearly positive blood work and some doctors would even skip the biopsy since biopsies do have a high rate of false negatives. False negative blood work is common but not false positives. If you do let this doctor do the biopsies make sure he takes at least 6 from different areas and do get a hard copy of the biopsy results. Some doctors don't recognize changes that happen before the villi are destroyed and some will see some blunting but tell you to keep eating gluten and come back in a year to see if the villi are totally destroyed yet. Whether you choose to biopsy is up to you. No matter what when you are done with testing you need to get on the diet strictly and glad to see you have had all your family members at least blood tested as usually if there is one celiac in the family there are more.

[zimmer]

thanks very much - I have already located a GI (through this board) who I will go to if I decide to do the biopsy. Given the conversation I had with the previous doc, I think I probably ticked him off! Add to that his "Old Gold Standard" stance..... don't think I would have any confidence or be able to discuss much with him.

As a contrast, my pediatrician today admitted that she was not as up to date as she thought she should be, was aware of the changes taking place in the celiac world, and said she was going to work on getting up to speed. That was very refreshing after my experience with the GI. BTW - love my ped and always have!

At this point, I'm leaning heavily toward just going gluten-free and not pursuing the biopsy. But I would like to establish a relationship with a GI so that if something arises, I know where to turn.