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I need to vent...

Maddiecl

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Maddiecl Explorer
Maddiecl
Posted

I was diagnosed around 7 months ago and have been eating strict strict strict gluten-free ever since.  I finally started to see some major improvements in my symptoms at my 5-6 month mark.  I'm only 24 and I have always been very athletic and healthy with no other health problems that I know of, so I assumed I would have healed and started feeling better fairly quickly.  I'm just getting so frustrated because although I'm starting to feel better I still get sick 1-2 days a week (yep, it's happening right now).  It's absolutely miserable I get crazy nauseous and my stomach balloons out and doing any small task feels like a huge struggle.  I'm definitely seeing more good days then I was when I was first diagnosed, but I still get so frustrated and desperate feeling when I have bad days.  I have tried to pay close attention to other food intolerances, but it is hard to find a rhyme or reason to my symptoms and pinpoint what makes me sick.  I feel ready to move on with my life... Start working again, go back to school, have a baby someday... But it feels impossible to do any of these things when I'm so unpredictably sick so often.  Does it get better? Is there anything else I should be checked for or do? Please help, I want my life back. 

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Zodi1993 Apprentice
Zodi1993
Posted

Hi :) 

My daughter is also 24 but was diagnosed with Celiac Disease about 4 years ago. You need to give yourself a break. Some days will be better than others and you will feel so frustrated because you just want to feel normal. But this is the new an improved you.  Just a suggestion that you might consider getting allergy tested. My daughter was still feeling horrible so she ended up being allergic to sesame seeds, yeast, and shrimp. So since eliminating these from her diet her health has improved. If you haven’t met with a dietitian they can be very helpful. If your kitchen hasn’t over gone a gluten-free makeover you need to do this ASAP. You could be inadvertently  contaminating yourself. Check your makeup and shampoo etc.  I’m so sorry that you are feeling overwhelmed but I promise It will get better. 

This is an awesome forum that has lots of  really wonderful people who have loads of information. 

Hoped this helped :) 

Ennis-TX Grand Master
Ennis-TX
Posted

Yeah I get rolling intolerance even 5 years into the diet.....honestly your issue sounds like you got glutened or have something else if you distended. I get the distention with Ulcerative Colitis flares also.
The day you got sick did you eat anything new or do something that might have CCed your food? IE forgot to wash your hands after handling something CCed? Walked through a bakery area in a store and inhaled flour (it will get stuck in your mucus in your nose then drain into your stomach-intestines). Tried a new food that was made on equipment or might have contained wheat? Ate out or ate something fixed by someone else?
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They do suggest getting follow up blood test every so often to see what your antibody numbers are at and if they are going down might be worth getting yours checked.


If it is any condolence I am having vomiting issues myself nasua and D for 3 days....not gluten I know but something else. Food diary and cross references ingredients leaves me with a few sad culprits and one I am  hopeful for. 1. Tapioca Starch, 2. Olive Oil (I had the issue with it go away over half a year ago). OR I am hoping I got salmonella poisoning as I just realized the eggs I have are on from that last batch they said to toss out.....

Anyway double check the newbie 101 thread to see if you missed something? Maybe a cooking pan/appliances/utensil got glutened?  And reference your food diary, try mixing up your meals more with more basic and rotating diet to find the culprit.
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Maddiecl Explorer
Maddiecl
Posted
  • Author

Thank you both for the replies. At my 6 month mark I had a repeat endoscopy and colonoscopy.  A bunch of biopsies were taken and from what my doctor told me I had no other gastro issues besides the celiac and my villi looked much better but not healed.  I have also been tested for nutrient deficiencies and my doctor said everything actually came back better than average.  I have made my entire kitchen gluten-free, even got new pot, pans, utensils, strainer, bowls, etc.  I have tried keeping a food journal but no matter how hard I try I cannot figure out a rhyme or reason to my symptoms.  One day I think something makes me sick and the next day it doesn't.  I would like to be tested for food sensitivities but my doctor told me the test wasn't very accurate and just tried to talk me out of it.  

 

Ennis_TX  I feel you, it is SO frustrating to feel sick and know there is no way it is from gluten! I hope you figure it out soon!

cyclinglady Grand Master
cyclinglady
Posted

Congratulations on the repeat endoscopy and colonoscopy indicating some healing!  That is great news.  But even the most seasoned celiac can get hidden exposures to gluten (I know I did).  It is so frustrating.  

Consider trying the Fasano gluten-free diet developed for those who are somehow still getting exposure to gluten.  

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You might think you are gluten free, but maybe you are not.  Besides your kitchen, are your pets gluten free (if you have any).  Do you ever eat out?  One member was getting glutened by her babies who smothered her with slobbery kisses.  Have you eliminated even gluten-free oats?  What about lactose?  

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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
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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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