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Not Celiac

mike2184

By mike2184
in Food Intolerance & Leaky Gut

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mike2184 Rookie
mike2184
Posted

I just received my blood tests back - all the antibody levels were 1's. I also tested negative for both of the celiac genes. To further confirm, I had a sandwich last night and a slice of pizza today - none of the symptoms that I had determined to be gluten-related occurred.

I am starting a food diary. The only time I have had what I considered to be a gluten reaction is after eating mexican food. Any ideas there? I also know that I have stomach issues with coffee and alcohol - but not sodas.

So much had improved since going gluten free - I guess I thought I had my answer. Now I am back to the drawing board. I am wondering if the change to a healthier diet has made the differences. I have no more dizziness, brain fog, back pain, and my overall health has been much better. The neuropathies have also improved, although they have not gone completely away.

I am really at a loss from where to go from here. I have had complete bloodwork and and MRI done prior to going gluten free. I am definitely going to keep on a similar diet, although it will be nice not to have to stress about being glutened when eating out.

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CarlaB Enthusiast
CarlaB
Posted

My blood tests were also negative, but I had two gluten intolerant genes and no celiac genes. You can see my Enterolab test results below. The blood tests can have a false negative, and it sure seems around here that for non-celiac gluten intolerants they usually are negative. You could still have a gluten problem!

If you get sick after Mexican food (I do, too, err, did), my guess is the dairy is a problem for you. I found I was casein intolerant.

When I got back on gluten for testing, and same with some others around here, it didn't bother me for a few days. At first, there was no reaction.

Keeping a food diary is a good idea. You may want to try Enterolab as their tests are more sensitive.

Nantzie Collaborator
Nantzie
Posted

The food diary is an excellent idea. That's what I suggest to people who find that gluten doesn't seem to be a problem.

I also had negative blood tests, negative biopsy and my genes came back gluten intolerant, not celiac. Read my sig line for more. Keep in mind that symptoms of being "glutened' arent' limited to gastro problems. Headaches, tiredness and irritability are what I usually get now.

Nancy

Guest nini
Guest nini
Posted

try enterolab, that can help you narrow down other intolerances if they are there, and has been stated, gluten symptoms aren't always digestive in nature... so gluten may be PART of the bigger picture, so a food diary is a very wise thing to do to help you find patterns

AndreaB Contributor
AndreaB
Posted

You could still have a gluten sensitivity. Enterolab is much more sensitive than blood draws as the intestines produce the antibodies and I assume after so much damage go to the bloodstream.

Enterolab tests for celiac as well as gluten sensitive genes. I would hate to see you not worry about getting glutened when you go out or start eating it occasionally and doing yourself more harm.

Enterolabs website is Open Original Shared Link

eKatherine Apprentice
eKatherine
Posted

Enterolab has found that many people who test negative but go gluten-free find health improvements.

mike2184 Rookie
mike2184
Posted
  • Author

Thanks everyone for the advice. I will continue keeping a food diary and look into ordering one or more of the tests from Enterolab.

In the meantime, it won't be too difficult to know if gluten is my problem. My health has gotten consistently better in the 10+ weeks of being gluten-free. So if it regresses, I have my answer with or without a diagnosis.

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Susan123 Rookie
Susan123
Posted

I was told by the Celiac Research Center in Baltimore that if you don't have the genes for Celiac that you can rule it out with 99.9% accuracy. That is pretty strong. I would look into other food allergies maybe. Have you gotten the food allergy testing done?

AndreaB Contributor
AndreaB
Posted

Just because you don't have the genes for celiac doesn't mean that you don't have what has been labeled non celiac gluten sensitivity. They have also labeled genes that tend toward that.

KaitiUSA Enthusiast
KaitiUSA
Posted

A food diary is a great idea. I hope you find out what is causing it. You could have a sensitivity or intolerance of some kind that is causing it. Also, msg causes many problems so it could be an additive like that.

You may not be celiac but you may still have a problem with gluten.. Have you looked into doing an Enterolab?

mike2184 Rookie
mike2184
Posted
  • Author

In reviewing my celiac panel, I noticed that my immunoglobulin score is high. Could this be indicative of a food allergy?

Thanks.

corinne Apprentice
corinne
Posted

Casein (a protein in dairy) intolerance can cause very similar symptoms to gluten - GI/brain fog etc. Might be worthwhile looking into.

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    • Scott Adams
      How many grams is there in one slice of wheat bread?

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      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
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      By Scott Adams · Posted

      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
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    • trents
      What should I do with these test results?

      By trents · Posted

      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      How many grams is there in one slice of wheat bread?

      By Jack Common · Posted

      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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