Test and Confused

[manfrdy]

Hello my fellow Celiac warriors, I too at this point in my life will be joining this very special tribe of people! I recently moved to Portland and just before I moved up here I had a endoscopy and colonoscopy which started out because I was testing anemic. The day before I left to come to Portland the doctor informed me that I was the recipient of the Celiac Disease award. So with very little discussion other then having to eat gluten free the rest of my life I headed off to Portland and  2 months later here I am trying to follow a gluten free diet and trying to get caught up on research regarding the disease. First of all this is an expensive disease to have just from the point of having to shop for gluten free items, everything is more expensive than non gluten free items, so I have noticed. Anyways that was not my point for this posting, what I would like an answer to is this. I am now meeting with a new primary care doctor and would like him to test me again for my current celiac prognosis you might say. What would be the tests that I would request from him so they he can run the whole gamut of test to verify my disease and give me peace of mind as to where this warrior stands in the fight against this disease.

[trents]

Welcome to the forum manfrdy!

First of all, if you have already begun the gluten free diet effort your serum antibody test results will likely not be valid. The pretest gluten challenge guidelines for serum antibody testing are daily consumption of gluten in the amount equivalent to two slices of wheat bread.

Here is a link outlining the antibody tests that should be run for diagnosing celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ If you should be inclined to resume eating gluten in order to be tested, ask for the full celiac panel to be done, not just the tTG-IGA as some people who do have celiac disease will test negative for the tTG-IGA. And go armed with information because most physicians know very little about celiac disease.

Eating gluten free need not be expensive unless you rely heavily on processed, prepackaged gluten free foods. Many mainline foods are gluten free if your are willing to buy fresh meat, vegetables and fruit and to cook for yourself.

[Scott Adams]

Some people get a follow up antibody test to verify that their levels have gone down, and that their diet has been gluten-free, although that isn't what the tests were designed for.

If you doubt your original diagnosis and want to be retested, this article may be helpful:

 

[RMJ]

It worries me that you say you want to “verify my disease.” The endoscopy with biopsies is pretty much the gold standard for a celiac diagnosis. Do you not believe it?

You could get tested for antibodies, however there are two issues.

1.  If you’ve already had antibody tests and are looking to see if they have decreased on the gluten free diet, you can’t compare results from different laboratories.  The units are test-manufacturer-specific, unlike many blood tests where the units are standardized.

2.  If you haven’t already had any antibody tests, as others have replied your levels may have already gone down since you’ve been on a gluten free diet. You could still see where you are now and if positive keep working to get them back into the normal range.

If you do want to be tested for antibodies, the tests would be:

Total IgA:  A control test to make sure this is in the normal range so that the other IgA tests are valid.

Ttg IgA (IgA antibody against Tissue transglutaminase)

Ttg IgG (IgG antibody against Ttg)

DGP IgA (IgA antibody against deamidated gliadin peptides)

DGP IgG (IgG antibody against DGP)

Some also do an EMA test.  It actually looks at the same thing as the Ttg but in a different way.

[manfrdy]

RMJ, it is not that I need to "verify my disease" it is just that after getting the diagnosis from the doctor I literally moved to Portland the next day. Now that I am here and trying to establish a new primary care I just want to know what tests I possibly should take to see where my disease stands since then.

[RMJ]

50 minutes ago, manfrdy said:

RMJ, it is not that I need to "verify my disease" it is just that after getting the diagnosis from the doctor I literally moved to Portland the next day. Now that I am here and trying to establish a new primary care I just want to know what tests I possibly should take to see where my disease stands since then.

I’m glad you’re not in denial about your diagnosis!  Some people have a hard time accepting it.

Did you have any celiac antibody blood tests in your previous location? 

In addition to the tests I listed, which are for celiac disease, you might want to be tested for your levels of various vitamins.  I’ll let others say which tests might be most useful for that - not my area of expertise!

 

[Wheatwacked]

Ask your new doctors office to request your medical records from your old doctor before your first appointment so he will have facts to look at, not just your say-so. So you don't have to reinvent your wheel with the new guy.

To me it seems the more nutritious I eat the cheaper it gets.  We pay a premium in nutrition and $$ having some company make our food. Shop mostly at farmers markets. Fresher food, cheaper prices.