Villi Still Damaged After All These Years?

[frec]

I was diagnosed with celiac disease in 2002. I have never cheated on the diet and only get glutened occasionally--maybe once or twice a year. My new gastro gave me an IgA/tTg test, just to check things, and I came out slightly positive (23). He did an endoscopy last week to check on things and found villous atrophy--not totally flattened, but damaged.

I am still baffled as to how I am being glutened, and several nice people gave me suggestions on another thread. I am sooo careful! I am still going over everything with fine toothed comb. I just thought I should let people know that this can happen. If your gastro hasn't recommended a blood test periodically (my old one never did), ask for one. Apparently you can damage your villi even with a very low positive score.

I also would like to know if it has happened to anyone else?

[Green Eyes]

I get results from a blood test today after 3 months of eating gluten free. I'm anxious to see what my results are!! I have a very difficult time because my system doesn't react to small amounts of gluten. I watch it ever so carefully - but I don't even know when I get those trace amounts so I never know to be more careful. Could this be your problem as well?

Jennifer

[fedora]

just wanted to say I am sorry, hope you figure it out

[happygirl]

After reviewing your diet, I would discuss the possibility of refractory sprue with your doctor. If he isn't knowledgable, I'd find one who is.

[dilettantesteph]

A GI celiac specialist gave a talk at our local chapter recently. He said that true sprue was very rare. Almost always people are getting small amounts of gluten accidentally. Since I am not all the way healed yet, I still react fairly quickly and can tell you that all sorts of things that are supposed to be gluten free seem to be cross contaminated with enough gluten to make me sick. It could be that even though you aren't getting obviously sick, you are still getting flattened vili from the same sorts of items. I try to only get things made in dedicated facilities. He recommended checking things like make-up, soap, lotion etc. I would also say that sprue is unlikely since your blood test was positive. It indicates that you are getting gluten somewhere. The same specialist said that now he considers under 20 negative, but that he is beginning to think that he should be lowering that figure to under 10. He also said that a dose as small as 0.5 mg. is enough to cause a reaction. I am sorry for your problems.

[neesee]

A GI celiac specialist gave a talk at our local chapter recently. He said that true sprue was very rare.

That's interesting. When I was diagnosed my gastroenterologist told me I was only the fourth real and true case of sprue he had ever seen in all of his career. Then he said one had died. I took that last statement to mean it was very important to follow the diet.

neesee

[Lisa]

Happygirl made a comment about Refractory Sprue. Having a conversation with someone who has been diagnosed with Refractory Sprue, due to the many years and severe symtoms of undiagnosed Celiac, her villi will no longer grow back, regardless of a dedicated gluten free diet. They're just gone.

Although perhaps rare, it does happen.

[Mike M]

I was diagnosed with celiac disease in 2002. I have never cheated on the diet and only get glutened occasionally--maybe once or twice a year. My new gastro gave me an IgA/tTg test, just to check things, and I came out slightly positive (23). He did an endoscopy last week to check on things and found villous atrophy--not totally flattened, but damaged.

I am still baffled as to how I am being glutened, and several nice people gave me suggestions on another thread. I am sooo careful! I am still going over everything with fine toothed comb. I just thought I should let people know that this can happen. If your gastro hasn't recommended a blood test periodically (my old one never did), ask for one. Apparently you can damage your villi even with a very low positive score.

I also would like to know if it has happened to anyone else?

Hello Frec, I haven't posted for very long, so I don't carry much clout, having said this, if you find the time, keep an eye on the gluten test strip thread. ShayFl will be doing some testing to see if the Elisa test strips are accurate or not. From the tests that I have performed, there are indeed issues with the so called "gluten free" foods that are out there and just food in general. Whole foods are just about the only safe way to go in my opinion and even then there can be problems. I was buying an entire organic non injected Turkey breast that was whole. (It was just the breast but it had been cut by the store) and I cooked it myself. I got gluttened from it. Tested it after the fact with the test strip and it was positive. Maybe it had been injected or something along the way or maybe a CC'd knife from the store. I don't know what the answer to this is, it makes me very upset. So now I have switched to almost only canned meats and buying local farm fresh raised meats from the local Amish. I also have a local fish farm that I buy my fish from. It seems like if the meat has been cut and packaged at the store, it is suspect for CC. So far all of the canned meats that I have been buying and testing from Sams Club are ok. Of course that can change. I might as well bring this up also (man are they going to attack me for this one) I have not found a salad dressing that contains vinegar, that does not test positive for some gluten. Mike