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Is This Celiac Or Sensitivity To Gluten?

michelley65

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michelley65 Rookie
michelley65
Posted

Im going absolutely nuts trying to figure out what to think of my condition.I have been battling this problem of terrible gas and bloating,and even diahrea after eating for probably 5 years now.I noticed that it was always worse after eating gluten.I went to a gasto a year and a half ago...he did a hydrogen breath test and said its bacterial overgrowth.He gave me antibiotics and after quite a few rounds...it was still going on.I told the doctor about the gluten problem,so he ordered a test for celiac.The test came back negative.Since then,I have been watching what I eat..until I am home from work..then I eat gluten and it starts up..every night!!I called the doc..he ordered bloodwork for celiac again.I had it drawn thismorning..but I think it will come back negative again.I know I atleast have a sensitivity to gluten..maybe even celiac..who knows.Is anyone out there having this same problem with a negative test result?I am trying to have a gluten-free diet now,but I mess up here and there and then Im in pain all evening.HELP!

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Wolicki Enthusiast
Wolicki
Posted

Im going absolutely nuts trying to figure out what to think of my condition.I have been battling this problem of terrible gas and bloating,and even diahrea after eating for probably 5 years now.I noticed that it was always worse after eating gluten.I went to a gasto a year and a half ago...he did a hydrogen breath test and said its bacterial overgrowth.He gave me antibiotics and after quite a few rounds...it was still going on.I told the doctor about the gluten problem,so he ordered a test for celiac.The test came back negative.Since then,I have been watching what I eat..until I am home from work..then I eat gluten and it starts up..every night!!I called the doc..he ordered bloodwork for celiac again.I had it drawn thismorning..but I think it will come back negative again.I know I atleast have a sensitivity to gluten..maybe even celiac..who knows.Is anyone out there having this same problem with a negative test result?I am trying to have a gluten-free diet now,but I mess up here and there and then Im in pain all evening.HELP!

I guess I just don't understand why you would continue to eat gluten when you have such reactions. The lifelong cure for either Celiac or gluten intolerance is a 100% strict gluten free diet. Stick to the diet religiously if you want to feel better. It's not a part time thing.

gf-soph Apprentice
gf-soph
Posted

What it comes down to is that you don't have to have a diagnosis of celiac in order to go gluten free. I can understand wanting the tests to come back positive so you are sure, but you have to listen to your body.

Assuming these tests come back negative, why not try the diet, strictly, for at least a few months. NO cheating. If you feel better, keep going with the diet. There is a lot of information around here about testing, and about false negatives as well. There are also people who have gone gluten free without a positive blood test and feel much better.

You've had problems for 5 years, so why not put aside a few months to really sort out whether gluten is the problem. You obviously suspect it, so cut it out! It may be that you think the diet will be too hard, but you will adjust. This might be a chance to get well again, why not give it a go?

ravenwoodglass Mentor
ravenwoodglass
Posted

Some of us will never show up in blood tests. I don't know why but the NIH estimates that 20% of us have false negative results. Being one of those who don't show in blood tests came very close to costing me my life. When all your testing is done get on the diet for at least 3 months or so. Your body may give you the answer testing cannot. I did finally get diagnosed but was close to death by that time so don't wait years for a positive blood test before you give the diet a shot.

tarnalberry Community Regular
tarnalberry
Posted

You don't need a blood test to know that gluten isn't good for you - your symptoms tell you that.

Just like you don't need someone to tell you that smacking your head against the wall is going to hurt - you just don't do it.

Ok, ok... maintaining a gluten free diet isn't quite that easy; we don't have people banging their heads against walls all the time and saying it feels really good even when we think it doesn't. But the concept is the same.

There aren't any good, main-stream accepted tests for non-celiac gluten intolerance yet. Not to mention celiac tests are NOT a simple "yes/no" read. If you know you do better without gluten, make the decision to go gluten free, and stick with it. The learning curve is hard (not just learning the foods/labels/etc., but the habits and mindset), but you can do it.

michelley65 Rookie
michelley65
Posted
  • Author

Thankyou all for your advise...I am trying so hard to stick with this.I have been almost gluten free for two weeks now...but am making little mistakes with seasonings and such.I have alot to learn!Does anyone know if pizza sauce is gluten free?I wanted to make a pizza tonight,but wasnt sure.

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

      By Scott Adams · Posted

      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
      Confused with test results

      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!
    • MaryMJ
      Water filters and gluten

      By MaryMJ · Posted

      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • 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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