Should I ask for more testing? Celiac vs. Gluten Sensitivity

[Natosha]

Hi! I apologize that this is going to be a long post but I am hoping to gain some insight from anyone who knows more about Celiac than I do. About 1 year ago I started have weird neurological symptoms(numbness/tingling, headaches, dizziness). This led me to a neurologist who found no issues and treated me for migraines and sent me to a hematologist. They hematologist also found no issues but asked me if I had and gastro issues ( i had been having chronic diaherra also) and if I had ever been tested for gluten sensitivity or Celiac disease as alot of my symptoms could be related to issues with gluten. This got me thinking about my 23 and me results that stated I was at a higher risk for developing Celiac ( I had never put much thought into before hand). I started doing a bit more research. I am a carrier of the HLA-DQ8 gene and I have also been a Type 1 diabetic for 14 years. I started eating gluten free right away hoping it would resolve my symptoms and begged my PCP for a celiac panel. I didn't realize that I should have stayed on gluten until the test was done. So I had been eating gluten free for about 3 days before my celiac panel, I did eat a gluten filled breakfast the morning of my blood test. My test results were, TISSUE TRANSGLUTAMINASE ANTIBODIES IGA QUANTITATIVE of <0.5 u/ml and GLIADIN (DEAMIDATED) ANTIBODY IGA QUANTITATIVE of 3.0 u/ml. My PCP told me my results were negative. I asked if he felt I had a gluten sensitivity and he told me that that was more of a "fad" diet and that I could go gluten free if I wanted to. I haven't had gluten in a year but I don't worry too much about cross contamination. I have eaten a few things that have made me very nauseous, bloated, caused diaherra, and vomiting but I'm not sure if it was from gluten or something else. I guess my questions are: do you think that the 3 days of no gluten messed with test results? , should I ask for more testing and if so what?, and would gluten sensitivity cause the same issues as Celiac?

Thanks so much!

[trents]

Welcome to the forum, @Natosha!

For future reference, when you share celiac blood antibody test scores, it is helpful to also include reference ranges for negative vs. positive since there are no industry standards in place. Each lab uses different scales. But, you have told us the results of the testing were negative, so we have the big picture.

Looks like you had two tests run:

tTG-IGA and DGP-IGA. One that should have been run and wasn't is "total IGA" which goes by some other names as well. Total IGA is important to run because it checks for IGA deficiency. If a person is IGA deficient, their individual IGA celiac antibody test scores will be artificially low and false negatives can be generated. Some doctors are under the mistaken impression that IGA deficiency only occurs in toddlers but we have had any number of adult contributors on this forum who were IGA deficient. I bring this up as you might ask that your PCP test you for IGA deficiency.

No, three days of being gluten free would not likely have much impact on your test scores.

I am also assuming that prior to that, you were eating liberal amounts of wheat products and not skimping on them because you suspected they made you ill.

If you don't have celiac disease you may very well have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.

I am including an article that discusses the various antibody tests that can be run for celiac disease detection. Your doc only ordered two. As you can see, there are several others. One one misses, another may catch. Some are more sensitive than others or are more specific. You could ask your doc for a "full celiac panel". For reference, you would need to be eating an amount of gluten daily for several weeks equivalent to what would be found in 4-6 slices of wheat bread leading up to the day of the blood draw or the testing to be valid. This is what current "gluten challenge" guidelines are recommending.

By, the way, your doctor referring to starting the gluten free diet to address gluten sensitivity as a "fad" is not a good sign. That's a bad attitude and probably reflects outdated knowledge concerning gluten disorders. I think I would be shopping for another doc.

Edited June 28, 2025 by trents

[Wheatwacked]

On 6/27/2025 at 7:08 PM, Natosha said:

My PCP told me my results were negative. I asked if he felt I had a gluten sensitivity and he told me that that was more of a "fad" diet

It seems the "fad" diet is working for you.  

[Zuma888]

On 6/28/2025 at 3:03 AM, trents said:

Welcome to the forum, @Natosha!

For future reference, when you share celiac blood antibody test scores, it is helpful to also include reference ranges for negative vs. positive since there are no industry standards in place. Each lab uses different scales. But, you have told us the results of the testing were negative, so we have the big picture.

Looks like you had two tests run:

tTG-IGA and DGP-IGA. One that should have been run and wasn't is "total IGA" which goes by some other names as well. Total IGA is important to run because it checks for IGA deficiency. If a person is IGA deficient, their individual IGA celiac antibody test scores will be artificially low and false negatives can be generated. Some doctors are under the mistaken impression that IGA deficiency only occurs in toddlers but we have had any number of adult contributors on this forum who were IGA deficient. I bring this up as you might ask that your PCP test you for IGA deficiency.

No, three days of being gluten free would not likely have much impact on your test scores.

I am also assuming that prior to that, you were eating liberal amounts of wheat products and not skimping on them because you suspected they made you ill.

If you don't have celiac disease you may very well have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.

I am including an article that discusses the various antibody tests that can be run for celiac disease detection. Your doc only ordered two. As you can see, there are several others. One one misses, another may catch. Some are more sensitive than others or are more specific. You could ask your doc for a "full celiac panel". For reference, you would need to be eating an amount of gluten daily for several weeks equivalent to what would be found in 4-6 slices of wheat bread leading up to the day of the blood draw or the testing to be valid. This is what current "gluten challenge" guidelines are recommending.

By, the way, your doctor referring to starting the gluten free diet to address gluten sensitivity as a "fad" is not a good sign. That's a bad attitude and probably reflects outdated knowledge concerning gluten disorders. I think I would be shopping for another doc.

Hey there,

You mentioned that current guidelines recommend to eat the equivalent of 4-6 slices of wheat bread for several weeks. Is it ok to do less for a longer period of time, for example 2 slices for 6 weeks?

Also, does this recommendation apply to blood tests as well as the biopsy, or do they each have different timelines?

Thanks in advance!

[trents]

It applies to both blood tests and biopsies. Guidelines for the gluten challenge have been revised for the very issue your question raises. It was felt by medical professionals that the longer term but less intense consumption of gluten approach was not proving to be reliable for testing purposes and was resulting in too many false negatives. But do keep in mind that the gluten consumption doesn't have to be in the form of bread slices. It can come in any form: pasta, cake, wraps, etc. Another approach would be to buy gluten powder at a health food store and mix it in a shake. The idea is to get at least 10g of gluten daily, whatever form it comes in.

[Zuma888]

Thank you so much!

So I can do 10 g worth of gluten in the form of gluten powder per day for two weeks and that should be enough?

[trents]

Two weeks is the minimum according to the guideline. I would go for four weeks if you can endure it, just to make sure.

[Zuma888]

3 minutes ago, trents said:

Two weeks is the minimum according to the guideline. I would go for four weeks if you can endure it, just to make sure.

You really saved me as I was on day 4 of 3 g per day for 6 weeks. Thank you very much!