Test Results - help

[NicolaVrabel]

I have been gluten free for over two years.  I have ataxia, and my neurologist thinks it is from gluten.  I quit eating gluten and it seemed to improve.  I had a celiac panel of blood work done and it showed that my gliadin antibody was 48 - abnormal.  I thought it would have levels of 0 since I am gluten free.  Does this indicate that I have celiac?

[trents]

It likely indicates you are not truly eating gluten free. Gluten is probably getting into your diet from unexpected sources. Research shows that most people who claim to be eating gluten free are actually eating low gluten. Do you still eat out at restaurants? Have you checked your pills and supplements? Do you live in a household where others are not eating gluten free? Have you checked everything in your cupboard lately to see if food companies have changed the formulation, such that what was once gluten free is no more? Most people trying to eat gluten free don't take into account cross contamination. For example, you order a hamburger without the bun. But that meat patty was probably cooked on the same grill that breaded chicken patties were cooked. And those gluten free spaghetti noodles at the Olive Garden may have been boiled in the same pot as their regular wheat noodles. Or, the gluten free thing was stirred with the same spoon that was used to stir wheat things. Or those French fries at McDonalds were cooked in the same vat of oil that breaded chicken nuggets were. Etc. , etc.

Maybe this will help: 

 

Edited July 20, 2022 by trents

[NicolaVrabel]

I've found a vitamin that is questionable.  I am totally gluten free, eat out only at gluten free places.  I wonder about air fresheners and dog food.  Would this matter?  Do you think it means I have celiac too?

 

[trents]

https://gluten.org/2021/03/23/43-foods-where-gluten-may-be-hidden/

[trents]

9 minutes ago, NicolaVrabel said:

I've found a vitamin that is questionable.  I am totally gluten free, eat out only at gluten free places.  I wonder about air fresheners and dog food.  Would this matter?  Do you think it means I have celiac too?

 

You said your gliadin antibody was "abnormal". I took that to mean that you were tested for celiac disease and were positive. Can you clarify what testing you have had done and post the numbers please with reference ranges? By "gliadin antibody" are you referring to total serum IGA or some specific IGA component?

[NicolaVrabel]

It says Celiac Panel.  Endomysial antibody is negative, gliadin antibody IGA is 5 - negative, gliadin IGG is abnormal (48) and transgutaminas IGG is negative, transgultaminas IGA is negative.

[trents]

The "abnormal" gliadin IGG could indicate celiac disease. Do you have a reference range for that one? What is normal? Different labs use different reference ranges so there isn't a standard. When this testing was done, were you already trying to eat gluten free by any chance?

[Scott Adams]

58 minutes ago, NicolaVrabel said:

It says Celiac Panel.  Endomysial antibody is negative, gliadin antibody IGA is 5 - negative, gliadin IGG is abnormal (48) and transgutaminas IGG is negative, transgultaminas IGA is negative.

You mentioned that you are totally gluten-free. Were you gluten-free before you took the celiac blood test? If so, you will have false-negative results, as you need to be eating about 2 slices worth of regular wheat bread for 6-8 weeks before taking this test.

[trents]

Okay, in reading back through your posts, I think what I see is that you were eating gluten free for two years and then had celiac panel testing done because your neurologist suspected celiac disease as the cause of your ataxia. Is this correct? If so, the celiac panel testing results would not be reliable. Even if someone does have celiac disease, if you gluten is removed from their diet, the inflammation in the small bowel lining will subside and antibody levels will plummet. The antibodies are markers that inflammation is happening.

[Kate333]

If you are regularly eating out, even at so-called gluten-free places/restaurants, or buying packaged foods labeled gluten-free (not certified gluten-free), you are likely still regularly consuming gluten.  Unfortunately, even restaurants that advertise themselves as having gluten-free menus, and packaged food manufacturers with gluten-free labels, still pose a very high risk for G cross-contamination, as Trents noted.  Moreover, these companies are rarely really inspected to ensure the truth of their claims.  

Try shopping for, cooking, and eating only fresh, unpackaged/unprocessed foods for a few weeks (only fresh meat, fruits, veggies) and see how you feel.   If you notice marked improvement in symptoms, you have your answer and know you must make eating habit changes to more strictly avoid G exposure.  If you want more objective, scientific evidence (as opposed to mere speculation), you will have to resume intentional G eating, then get retested with an updated blood test (TTG/IgA) to more accurately assess your current G antibody levels.  

 

[NicolaVrabel]

3 hours ago, Scott Adams said:

You mentioned that you are totally gluten-free. Were you gluten-free before you took the celiac blood test? If so, you will have false-negative results, as you need to be eating about 2 slices worth of regular wheat bread for 6-8 weeks before taking this test.

I was gluten free, that's why is seemed odd to have high levels.  Do you think it is worth eating the gluten to take another test?

 

10 minutes ago, Kate333 said:

If you are regularly eating out, even at so-called gluten-free places/restaurants, or buying packaged foods labeled gluten-free (not certified gluten-free), you are likely still regularly consuming gluten.  Unfortunately, even restaurants that advertise themselves as having gluten-free menus, and packaged food manufacturers with gluten-free labels, still pose a very high risk for G cross-contamination, as Trents noted.  Moreover, these companies are rarely really inspected to ensure the truth of their claims.  

Try shopping for, cooking, and eating only fresh, unpackaged/unprocessed foods for a few weeks (only fresh meat, fruits, veggies) and see how you feel.   If you notice marked improvement in symptoms, you have your answer and know you must make eating habit changes to more strictly avoid G exposure.  If you want more objective, scientific evidence (as opposed to mere speculation), you will have to resume intentional G eating, then get retested with an updated blood test (TTG/IgA) to more accurately assess your current G antibody levels.  

 

I don't think it's worth eating it again.  What do you think?

 

[Scott Adams]

As long as you don't need a piece of paper that says you have celiac disease in order to stay on a strict gluten-free diet for life, then no, I don't think a positive test result is necessary. Some people need this, but it sounds like you already know that gluten causes issues for you.

[NicolaVrabel]

2 minutes ago, Scott Adams said:

As long as you don't need a piece of paper that says you have celiac disease in order to stay on a strict gluten-free diet for life, then no, I don't think a positive test result is necessary. Some people need this, but it sounds like you already know that gluten causes issues for you.

Thanks