Gluten Sneaking In? Refractory Sprue?

[jaten]

I was diagnosed with Celiac 2 1/2 years ago, and I have been strictly gluten free ever since. Very strict.

I had not had any follow up testing done since my diagnosis until earlier this week when my GI dr. performed an upper endoscopy with biopsy because of pretty severe abdominal pain. The biopsy shows Celiac damage...villous atrophy.

I am as certain as I possibly can be that I have not been ingesting ANY gluten. I was so sick prior to diagnosis, and I get so sick from a very rare accidental glutenings/cross-contamination that from the beginning my husband has gone gluten-free with me at home to keep our kitchen entirely safe. We are committed & quite adept in every way to avoiding gluten, so please don't make suggestions of where to look for gluten in my diet, medicines, shampoos, etc.

The help I need is this: I suspect that I have refractory sprue, but I would much prefer to find that I have somehow been ingesting gluten. I know (I think) that serology can clarify whether I'm ingesting gluten. What blood tests need to be run at this point? Is it the Celiac panel, or something else?

I am to see my GI again on May 30, but I would like to go ahead and have him do whatever serology panel NOW. I talked with his nurse, and she said to give her the name of the test(s) and she will talk to him about doing the tests prior to my visit. (Obviously I don't want to wait 3-4 weeks to begin solving this very big problem.)

Please tell me the tests I need, and preferably point me to the information on Columbia's, Mayo's, CSA, or other equally reputable site. Information to interpret the results would be hugely welcomed as well.

Thank you, friends!

Edit: I didn't mention because it's not really relevant to my question, but my GI is planning to have me do a capsule endoscopy.

[Rachel--24]

The follow-up bloodwork would be the same as what you'd have already had done at the time of your diagnosis (I'm assuming you had bloodwork).

These are the tests.

Serologic Tests

EMA (Immunoglobulin A anti-endomysium antibodies)

AGA (IgA anti-gliadin antibodies)

AGG (IgG anti-gliadin antibodies)

tTGA (IgA anti-tissue transglutaminase)

Open Original Shared Link

If you've never had positive bloodwork in the past then you would also need to have the Total Serum IgA checked as well (in case you are IgA deficient). IgA deficiency would result in negative bloodwork (even if you are still being exposed to gluten).

[jaten]

Thank you, Rachel.

I thought it was the same panel, but then somehow I wasn't completely sure.....but duh! That's why you have to do the panel BEFORE you're gluten-free

Thanks for the help.

[gfpaperdoll]

Do you eat dairy & soy?

You might also need to be grain free...

[happygirl]

However, the tTG and EMA tests are correlated (to some degree) of villous atrophy. If you have villous atrophy after this long of gluten free damage, then the bloodwork *probably* won't show anything different than what was seen in the biopsy. Another option would be to have another pathologist review your biopsy slides, and then a GI with experience in refractory sprue evaluate the reports and your situation.

www.celiacdiseasecenter.columbia.edu and Dr. Green's book may provide some interim guidance until a specialist is seen.

Best of luck to you.

[jaten]

However, the tTG and EMA tests are correlated (to some degree) of villous atrophy. If you have villous atrophy after this long of gluten free damage, then the bloodwork *probably* won't show anything different than what was seen in the biopsy.

Thank you for your help, but I don't understand this and haven't read this anywhere before. I thought the antibody tests would show what is actually going on in my system.....antibodies to gluten therefore gluten is present, or no antibodies to gluten and therefore gluten is not present. (As long as I am not iga deficient.)

The biopsy shows physical damage, but the blood tests will help clarify the cause of the physical damage.

Please give me something to read that will support what you've said. I really want to understand.

Thanks all!

[Rachel--24]

Thank you for your help, but I don't understand this and haven't read this anywhere before. I thought the antibody tests would show what is actually going on in my system.....antibodies to gluten therefore gluten is present, or no antibodies to gluten and therefore gluten is not present. (As long as I am not iga deficient.)

The biopsy shows physical damage, but the blood tests will help clarify the cause of the physical damage.

The anti-gliadin IgA and anti-gliadin IgG are both antibodies which are produced when you are consuming gluten.

The tTG and EMA are more indicative of actual damage that is occurring. Since you already know that your villi have not healed and are fairly certain you have been diligent on your diet these tests are less useful as far as determining whether or not gluten is sneaking in.

However, the anti-gliadin antibody tests should provide you with the information you're looking for.

What Happygirl is saying is that you already know (from the biopsy results) that the villi are still damaged. The results of the EMA and tTG may just confirm what you already know....villous atrophy.

If the antigliadin antibodies are also elevated that would indicate that you are still exposed to gluten in your diet (or some other source).

[jaten]

Thank you all! The combination of information, explanations, and sites to reference were extremely helpful.

[jaten]

Update: My GI requested a Celiac Panel to be processed by Prometheus. I'm sure I won't know anything until my appt the end of May, but at least I feel a sense of relief knowing that the antibody testing is already being processed. (Lab drawn on Monday & Fed Ex'ed to Prometheus.)