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Hello From Greenville, Sc


NightOwl

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NightOwl Newbie

Hi everyone! I actually joined this forum in 2007 but stopped coming here, at the time I lived in W. Palm Beach, FL but 2 years ago I moved to SC. I am a 50+ divorced mother of 2 adult children, and I have a beautiful 2 y.o. granddaughter.

I have never been diagnosed w/celiac but my father died as a consequence of it and I'm sure that's what killed his mother as well. But because I never even told a doctor about my suspicions, it was easy for me to be in denial. Around the year 2000-1 I did begin to see that wheat was not my friend. I remember one time when I suddenly began feeling awfully depressed, tired and my clothes were suddenly tight; I realized I'd been eating whole wheat bread daily for several days so I decided to stop and see what happened and I was amazed when 6 lbs. dropped off me in less than 3 days.

Anyone would've thought that had made a believer of me but it didn't, I thought at worst I just had a "wheat allergy" because I didn't seem to react to rye. The only other cereal I ate occasionally was oats, but it was hard to tell if they affected me because I ate them with honey and molasses and I was supposed to avoid sugars because of my hypoglycemia. So for years I went back and forth avoiding wheat (& dairy too) for months but eventually falling into temptation again.

I'd read somewhere that some people supposedly can eat gluten again after 6-12 mo. of abstinence and I was hoping to be one of those (if they indeed exist), so I guess that delusion helped me continue my destructive pattern. At first there was no reaction whatsoever, then my chronic congestion would get worse causing apnea attacks when I slept (but I often could get around that taking Loratadine), my face contour would change looking rounder and my upper eyelids puffy, and I'd gain weight extremely fast.

But then two years ago I began having clear intestinal problems when eating wheat, I remember being doubled over with colic wishing I at least could go to the bathroom and "get rid of it". Naturally, I stopped but foolishly repeated the same cycle 2 more times, each time with increasingly serious consequences, the last time, because of my Adrenal Fatigue the symptoms were horrendously scary and I swore I'd never touch gluten foods ever again because I do not want to have to go through that ever again, and not only that, it's taken me much longer to recover this time. :-( I'm hoping though that my experiences with this affliction will allow me to help others in the future.

Ok, now that I got my story out, if there's anybody from Upstate SC in this forum I'd love to connect with you, but I'll also be happy to find any friends close to my age from anywhere, I'm sure everyone knows how lonely having celiac can be, it's like others have no clue as to how bad this can be and how difficult it is to try to live in a world where just about everything has gluten in it.


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Gemme Rookie

Hi everyone! I actually joined this forum in 2007 but stopped coming here, at the time I lived in W. Palm Beach, FL but 2 years ago I moved to SC. I am a 50+ divorced mother of 2 adult children, and I have a beautiful 2 y.o. granddaughter.

I have never been diagnosed w/celiac but my father died as a consequence of it and I'm sure that's what killed his mother as well. But because I never even told a doctor about my suspicions, it was easy for me to be in denial. Around the year 2000-1 I did begin to see that wheat was not my friend. I remember one time when I suddenly began feeling awfully depressed, tired and my clothes were suddenly tight; I realized I'd been eating whole wheat bread daily for several days so I decided to stop and see what happened and I was amazed when 6 lbs. dropped off me in less than 3 days.

Anyone would've thought that had made a believer of me but it didn't, I thought at worst I just had a "wheat allergy" because I didn't seem to react to rye. The only other cereal I ate occasionally was oats, but it was hard to tell if they affected me because I ate them with honey and molasses and I was supposed to avoid sugars because of my hypoglycemia. So for years I went back and forth avoiding wheat (& dairy too) for months but eventually falling into temptation again.

I'd read somewhere that some people supposedly can eat gluten again after 6-12 mo. of abstinence and I was hoping to be one of those (if they indeed exist), so I guess that delusion helped me continue my destructive pattern. At first there was no reaction whatsoever, then my chronic congestion would get worse causing apnea attacks when I slept (but I often could get around that taking Loratadine), my face contour would change looking rounder and my upper eyelids puffy, and I'd gain weight extremely fast.

But then two years ago I began having clear intestinal problems when eating wheat, I remember being doubled over with colic wishing I at least could go to the bathroom and "get rid of it". Naturally, I stopped but foolishly repeated the same cycle 2 more times, each time with increasingly serious consequences, the last time, because of my Adrenal Fatigue the symptoms were horrendously scary and I swore I'd never touch gluten foods ever again because I do not want to have to go through that ever again, and not only that, it's taken me much longer to recover this time. :-( I'm hoping though that my experiences with this affliction will allow me to help others in the future.

Ok, now that I got my story out, if there's anybody from Upstate SC in this forum I'd love to connect with you, but I'll also be happy to find any friends close to my age from anywhere, I'm sure everyone knows how lonely having celiac can be, it's like others have no clue as to how bad this can be and how difficult it is to try to live in a world where just about everything has gluten in it.

Thank you for sharing.

I am celiac and have learned , reading yr post.

Thanks for giving yr time

NightOwl Newbie

Thank you for sharing.

I am celiac and have learned , reading yr post.

Thanks for giving yr time

Hi, thanks for responding to my post, I had not yet figured out how to get notified by e-mail of replies so I just coincidentally came back around here and saw you had replied.

I'm glad my post offered something, I'm sure we all have experiences that can be useful to others. I now have to "educate" my sister who believes eating gluten occasionally is not a big deal, that's what she did with my father, kept giving it to him when he asked for it, and now I'm not surprised that her adult son, who I learned yesterday was diagnosed several years ago, still cheats fairly regularly and he thinks as long as he can avoid getting diarrhea everything's "ok". :o But then for years I used to think that all I needed to avoid was making my nasal congestion worse... I thought it was all due to a connection to my mold sensitivity (as wheat contains mycotoxins, on top of everything) because for a while it looked like I could get away with it during the winter months, but I'm now not exposed to mold anymore and kept getting worse due to my cheating and I now I understand that the antibodies had attacked my thyroid, adrenals and liver (so far that I knew of...).

  • 4 months later...
JennShad Newbie

Hello! And Welcome! I too live in Greenville and have been DESPERATELY looking for folks to link up with! Your story sounds exactly exactly like mine!! I have not been diagnosed, but have had my suspicions for years. The symptoms and complications seem to be getting worse each time I go off gluten for a time, then go back. I am really hoping to connect with some people that already know of some good docs in the area that are educated and knowledgeable about celiac disease...my experience is that they all just want to tell you, you have IBS or something...and they don't want to listen. I hope you check back soon!

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