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Increasing Symptoms

Vozzyv
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Vozzyv Newbie
Vozzyv
Posted

Back story: Started having constant LLQ pains 3 years ago. ( no blood, no diarrhea, not affected by food or bm's) Have had X rays, CTs, Colonoscopy, Endoscopy. No sign of Celiac, a few non-cancerous polyps found and cut out. Fast forward to today: LLQ pain still there, but now tension headaches and very stiff back are increasing, along with random muscle twitching, random foot cramps, etc. I have not gone gluten-free until recently, as the endo was negative, and I never seemed be affected by food. I'm on my 2nd GI doctor, she suggested stool tests, another Colonoscopy, and Celiac blood test. With the lack of diarrhea and negative results on last Colonoscopy/Endo, it seems like she's guessing. Should I do any of these, or just wait it out going gluten-free? 

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trents Grand Master
trents
Posted

Welcome to the forum, @Vozzyv!

Blood antibody testing for celiac disease must be done while are still consuming regular, generous amounts of gluten. The latest recommendations for a "gluten challenge" for those having already embarked on the gluten free diet is the daily consumption of at least 10g of gluten (the equivalent of 4-6 slices of bread) for at least two weeks before the blood draw or the endosopy/biopsy.

Your understanding of celiac disease symptomology is impoverished. Diarrhea is far from the only symptom that is a tip off to the presence of celiac disease. Yes, it is a classic symptom but we now know that there are over 200 symptoms that have been associated with celiac disease and many of them are not GI centric. Many or most celiacs have few or no "classic symptoms" but damage to their gut or other organs is happening none the same. We call them "silent" celiacs. I was one of them.

When you endoscopy was performed, did they take biopsies of the small bowel lining and send them off to a lab for microscopic analysis? The damage to the small bowel mucosal lining is not always visible during the scoping itself.

Vozzyv Newbie
Vozzyv
Posted
  • Author

I understand gluten must be consumed before a blood test, I was debating the taking of one since Endo was negative. I threw out the diarrhea reference since it's common in other GI issues with overlapping symptoms. Yes, I believe they took 4 biopsies. Celiac and H Pylori were ruled out at that time. Most of my symptoms are not GI related, which is making me lean towards Celiac/Gluten intolerance. 

trents Grand Master
trents
Posted

"Most of my symptoms are not GI related, which is making me lean towards Celiac/Gluten intolerance."

Not sure what you are intending to say here as the statement seems to contradict itself.

There always has been some confusion/inconsistency over terminology when talking about gluten-related disorders. Having said that, most in the know these days use the term "gluten intolerance" as a synonym for celiac disease and the term "gluten sensitivity" to refer to NCGS (Non Celiac Gluten Sensitivity). Celiac disease damages the villous lining of the small bowel but NCGS does not, though it shares many of the same symptoms with celiac disease. Currently, there is no way to test for NCGS. Celiac disease must first be ruled out. NCGS is 10x more common than celiac disease and some experts believe it can be a precursor to the development of celiac disease.

Vozzyv Newbie
Vozzyv
Posted
  • Author

My bad, NCGS was more what I meant, not gluten intolerance. Anyways, is it worth the blood test if the endo was negative? My understanding is that it's more unreliable than an Endoscopy. Suggestions?

trents Grand Master
trents
Posted

The endoscopy with biopsy is considered to be the gold standard of celiac disease diagnosis. Usually, the antibody blood tests are done first and then the endoscopy/biopsy is used to confirm the diagnosis if the antibody testing is positive. However, if the damage to the mucosal lining of the small bowel from celiac disease is patchy or if the onset of the disease is recent such that damage is minimal, the biopsy can be falsely negative. Yes, I would pursue the antibody blood testing but ask for a "full celiac panel" and not just the TTG-IGA test which is all many docs order. A more complete celiac blood antibody panel would include these tests: 

Total IGA

TTG-IGA

DGP-IGA

DGP-IGG

Here is a primer for celiac blood antibody testing: 

 

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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

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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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