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Possible Celiacs?

cb1988
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cb1988 Rookie
cb1988
Posted

Hi,

I'm new here and was hoping for some insight since you all seem so knowledgeable. I'm 31 and started having pain and dizziness after a super stressful time in my life about 8 years ago. It has come and gone over the years but probably always some underlying stuff going on that I just learned to cope with (pain, nausea, loose stools, tingling in feet). Doctors always attributed it to an active lifestyle, wear and tear, and stress. After my son was born 3 years ago I experienced horrible anxiety and it's been rough ever since. I had my second child almost a year ago and have been experiencing joint pain (without swelling), brain fog, muscle pain, numbness/tingling mostly in my feet, lots of new cherry angiomas, and I'm wondering if I have Raynaud's (my fingers turn light just if I grab something out of the freezer then turn normal color pretty quickly so not sure if that's technically Raynaud's). I have rosacea postpartum, horrible depression and anxiety, I just generally feel miserable every day and this is not who I used to be. 

I went to a rheumatologist a few months ago and while I have a positive rheumatoid factor I tested negative for all autoimmune diseases and my inflammation markers were all normal. I'm now working with a naturopath and all of my blood work for wheat sensitivity and celiac pointed to negative except a low immunoglobulin A number. She wants to do the genetic screen for celiac this coming week due to low IGa and my positive RF.  Can I have celiac and only carry the gene for it and it's causing all of these symptoms? Can just being gluten intolerant be causing me all of these issues? I have no known food allergies or autoimmune diseases in my family but my daughter is showing food sensitivities and will be going to an allergist. I also unintentionally didn't have gluten for a few days last week and it was kind of like a light bulb went off and I realized I felt better but started eating it again since I have this blood test coming up. Any insight is so appreciated, I've really enjoyed reading through this forum and finding hope that maybe gluten is my problem and I feel like that's something I can really tackle. Again, I have terrible anxiety so leave out any terrifying diagnoses this could be, I will google and convince myself I have it and am dying.

Thank you! 

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GFinDC Veteran
GFinDC
Posted

Hi,

Your symptoms do sound like they could be caused by celiac disease.  The genetic test is a good idea IMHO.  Some people with celiac are sero-negative (don't show up on antibody testing) but still have the condition.

Another test you should ask for is a vitamin and mineral panel.  Damage to the small intestine lining by celiac can cause mal-absorption of nutrients.  People with celiac can be low on vitamin D and some B vitamins and several minerals because they aren't absorbed.

There is a small percentage of people who don't make IgA type antibodies.  So the IgA type antibody testing for celiac is useless for them.  IF you do turn out to have celiac there is a 44% chance your daughter will have celiac or develop it at some point.

Depression and other mental symptoms can be caused by nutrient deficiencies and hormone imbalances caused by them.  Sleep problems can happen too.

 

 

 

trents Grand Master
trents
Posted
(edited)

In your case, because of low IGA, I would recommend pursing an upper GI endoscopy with biopsy of the small bowel lining to check for damaged villi that is the hallmark of Celaic disease. The antibody blood tests for celiac disease are not accurate in people with low IGA. But whether we are talking about the blood antibody test or the endoscopy, you must be eating regular amounts of gluten daily (equivalent of two slices of wheat bread) before the testing. At least 6-8 weeks of gluten consumption before the blood test and at lest 2 weeks of gluten before the scoping/biospy. Many make the mistake of starting to eat gluten free before testing.

If the villi are not damaged then you may have gluten sensitivity for which there currently is no test. It is diagnosed by the improvement of symptoms when eliminating gluten from the diet. It carries many of the same long term health risks as celiac disease and many of the same symptoms. And the antidote is the same. Total avoidance of gluten. 

Are you taking any vitamins/minerals/supplements? A lot of the symptoms you describe could have vitamin/mineral deficiency basis.

Edited by trents
cb1988 Rookie
cb1988
Posted
  • Author
1 hour ago, trents said:

In your case, because of low IGA, I would recommend pursing an upper GI endoscopy with biopsy of the small bowel lining to check for damaged villi that is the hallmark of Celaic disease. The antibody blood tests for celiac disease are not accurate in people with low IGA. But whether we are talking about the blood antibody test or the endoscopy, you must be eating regular amounts of gluten daily (equivalent of two slices of wheat bread) before the testing. At least 6-8 weeks of gluten consumption before the blood test and at lest 2 weeks of gluten before the scoping/biospy. Many make the mistake of starting to eat gluten free before testing.

If the villi are not damaged then you may have gluten sensitivity for which there currently is no test. It is diagnosed by the improvement of symptoms when eliminating gluten from the diet. It carries many of the same long term health risks as celiac disease and many of the same symptoms. And the antidote is the same. Total avoidance of gluten. 

Are you taking any vitamins/minerals/supplements? A lot of the symptoms you describe could have vitamin/mineral deficiency basis.

This is really helpful advice! I've been pregnant and breastfeeding for 4 years straight so I'd be shocked if I don't have some deficiencies. My funct med Dr. ran ferritin, B12, magnesium, vitamin D and all of that was normal range. I'm taking a prenatal, omega 3's, and magnesium. I'm praying it's a gluten sensitivity and can be managed. All of this time the thought of celiac or sensitivity being the case never occurred to me but maybe it fits? I'm certainly anxious to cut out gluten and see if there's an improvement but understand I have to wait.

Scott Adams Grand Master
Scott Adams
Posted

Even with low IgA blood test results can still be accurate, but only IF they follow the protocol in this article:

 

trents Grand Master
trents
Posted

Scott, in the article you site you make this statement, "These tests are very specific because certain antibodies only appear in those with gluten sensitivity, celiac disease and/or dermatitis herpetiformis."

This seems to contradict the information you gave in a forum conversation a few days ago where you sated there currently is no test for gluten sensitivity.

Scott Adams Grand Master
Scott Adams
Posted

Sort of, but maybe not a contradiction…so what I mean is that some people with gluten sensitivity may have elevated antibodies, but they are still below the cut off for celiac disease, and they may also not have flattened villi. They are in the grey area where they are have a reaction to gluten, but just not one that fits the definition of celiac disease. 

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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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