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Ack, Feel Like I'm Chasing My Tail

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up-late Rookie
up-late
Posted

Well I finally got to the allergy clinic after several doctors refusing to send me and wanting to blame it on anything from depression to irritable bowel to chronic fatigue (I thought they were meant to eliminate all the other potential physical causes first :angry: ) One sent me for bloods some of which came back positive and then told me she didn't know what they meant :blink:

When I got to the clinic the doc there didn't do any allegy testing and put me straight on the elimination diet instead which comes a close second in the running for a perfect hell. Now after about a month of feeling great I'm exhausted and irritable due to the poor nutrition of the diet, the challenge reactions, getting more so and far more sensitive on top of it. I've had a few nasty reactions with the challenges so far (not suprisingly wheat but dairy and amines I've had some reaction to as well) I've still got a stack left to do and the sulfites is a real worry, the last time I had something with 220 in it I was violently ill, they want me to do the tests at home, no way am I going to do that, I don't want to end up in the emergency room again.

Anyhow, I want to go get a complete allergy scratch/bloods and celiac screening. They've already told me I'd have to eat gluten to be tested for celiac (which will last about 3 days before I'm ready to leap off the gap) are there any tests that don't require I eat gluten for any more than a day or two? I get nailed by just a small amount and by day 3 it's about as bad as that part of it gets, I wouldn't risk longer than that, I don't want to get back to the stage where I can't even drink water without being in pain. Will a scratch test be enough? What's the difference between gluten allergy and celiac?

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dbmamaz Explorer
dbmamaz
Posted

I'm kinda new to all this, but this is my understanding. An allergy is an IgE response, and its usually things like hives, trouble breathing, shock, trips to emergency room. Gluten intolerance is an IgG response, which is a more delayed response usually. Celiac disease is a gluten intolerance which has gone so far as to kill off the hair-like structures inside your gut.

While it is often helpful to have a diagnosis, many on this board dont bother. You can pay cash for testing through various labs - enterolabs (i think thats it) does very accurate testing (i believe of stool). I did a blood test through A.L.C.A.T (if you dont put in the dots, the name gets changed on this website, but you can goodle it without the dots) does a blood test which can test for tons of different foods, additives, etc. I believe the enterolabs tests are the most accurate even if you havent been eating the item, but the AL CA T can also find things you dont eat - for example, my worst reaction was to duck, which i have eating maybe a half dozen times ever, and not in 2 years. However, neither of these tests are accepted by most doctors.

But the real question is - do you really want to feel sick by eating things, just so a doctor can write down on a piece of paper that you have a disease? If they say you dont have celiac but you feel sick when you eat gluten, you arent going to eat more gluten! Doctors really arent very good at much but giving pills. Dont expect a doctor to come figure out what exactly is wrong with you and fix it for you, they just dont do that. THey prescribe pills, thats what they are paid to do, by the pharmaceutical companies.

Sorry you are so sick and hope you find a way out of it

up-late Rookie
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Posted
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About 18 years ago was when I had the worst of my symptoms (just after I had my eldest son, yes it's been going on this long and a stack of misdiagnosis in the mean time where the treatment made me worse eg: "irritable bowel, eat more high fibre cerials") I don't ever want to get that sick again. I don't know if I posted on it before but I lost 4 stone in 6 weeks and ended up eating high calorie foods just to keep some weight on, I was up the hospital on average twice a week in agony, all the stomach problems described, I couldn't even drink water without my stomach cramping. They took my blood pressure and it was dangerously low, the nurse couldn't find my pulse, guess what happened, the idiot doctor came down and called it anorexia, he then threatened to put me in the psych ward accusing me of starving myself! At another hospital the nurses thought me being glued to the bathroom was funny. You know they didn't even put in a drip to rehydrate me. This went on for 2 years. Meanwhile I got so small I was flat out finding clothes to fit and had to buy stuff from the childrens section. I went home and started making out my will. You know how I finally stopped most of it? I started alternating fasts a few days with eating a few days to give my system a rest, started a food diary cutting out anything I reacted to and just about bought out the local chemists supply of imodium. I have no idea just how much damage all this has done to my body. So am I going to eat gluten for 3 months to satisfy a bunch of medicos who can't get anything right? are they going to treat me if I get that sick again? I don't think so.

Anyway no doubt this has done some damage, so what damage is it likely to have done? Is there a pattern of related problems that can be tested that are unique to celiac? (eg bone density, anemia, bowel, brain etc) If they can't test for celiac directly can they test for its long to medium term effects? After all this I really should be getting tested for that stuff anyway.

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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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