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Post-remission re-flare with weight gain


Down with the Pastryarchy

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Down with the Pastryarchy Newbie

Greetings fellow Celiacs!
I was first diagnosed while living in Prague, and following an AIP diet and the advice of a Functional Medicine Naturopath there, I went into remission (ttg markers below 6) and lost 30+lbs, which allowed me to feel like my best self (and the weight was a sign of inflammation in my body in my case). There was less strain on my joints, more mental clarity, better memory function, more energy, etc. And I was happy. 

I had surgery and an IUD added to my life a year into that remission. It brought on a horrendous flare and I ended up in hospital with pneumonia. I lost more weight while sick, and ate a lot of (safe) carbs while I was trying to recover a healthy weight. I also moved back to Victoria, BC in the midst of that. I've added thyroid meds and LDN to my treatment since then, and swapped around a few supplements, and added in foods that weren't available in CZ. The first 1.5 years here I also lived adjacent to the kitchen ventilation of a busy gluten serving restaurant (I have reacted to airborne gluten in other situations too so that's not what's up for debate). I have been over my diet, supplements, and medications with a fine tooth comb and cannot find a source where gluten is getting in. And yet my ttg varies between 13 and 23 (it was 20 at preliminary diagnosis, 59 after eating a small portion of gluten daily for 4 days leading up to testing, which also made me violently ill for 6 weeks+++). I have also gained 35lbs+ and have experienced a relapse of almost every symptom I had prior to diagnosis/starting Autoimmune Paleo. I'm baffled. My care team is baffled. So I thought I would put this out there just in case somewhere in this forum there is another human dealing with similar things who has magically figured out the answers I need. Many thanks. 


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cyclinglady Grand Master
6 hours ago, Down with the Pastryarchy said:

Greetings fellow Celiacs!
I was first diagnosed while living in Prague, and following an AIP diet and the advice of a Functional Medicine Naturopath there, I went into remission (ttg markers below 6) and lost 30+lbs, which allowed me to feel like my best self (and the weight was a sign of inflammation in my body in my case). There was less strain on my joints, more mental clarity, better memory function, more energy, etc. And I was happy. 

I had surgery and an IUD added to my life a year into that remission. It brought on a horrendous flare and I ended up in hospital with pneumonia. I lost more weight while sick, and ate a lot of (safe) carbs while I was trying to recover a healthy weight. I also moved back to Victoria, BC in the midst of that. I've added thyroid meds and LDN to my treatment since then, and swapped around a few supplements, and added in foods that weren't available in CZ. The first 1.5 years here I also lived adjacent to the kitchen ventilation of a busy gluten serving restaurant (I have reacted to airborne gluten in other situations too so that's not what's up for debate). I have been over my diet, supplements, and medications with a fine tooth comb and cannot find a source where gluten is getting in. And yet my ttg varies between 13 and 23 (it was 20 at preliminary diagnosis, 59 after eating a small portion of gluten daily for 4 days leading up to testing, which also made me violently ill for 6 weeks+++). I have also gained 35lbs+ and have experienced a relapse of almost every symptom I had prior to diagnosis/starting Autoimmune Paleo. I'm baffled. My care team is baffled. So I thought I would put this out there just in case somewhere in this forum there is another human dealing with similar things who has magically figured out the answers I need. Many thanks. 

When was your last endoscopy?  If your small intestine has healed, another autoimmune disorder or illness  may be the cause of your current slightly elevated TTG.  If villi damage is still there, then you should look at refractory celiac disease.   The good news is that most cases of refractory involves exposure to hidden gluten.  

  • 1 month later...
ktyler44 Contributor

What about shampoo, skin cream, lotions, etc.? 

  • 3 weeks later...
Down with the Pastryarchy Newbie
On 2/13/2018 at 10:51 AM, ktyler44 said:

What about shampoo, skin cream, lotions, etc.? 

Those have definitely been thoroughly checked and aren't a possibility at this point. 

Down with the Pastryarchy Newbie
On 12/21/2017 at 7:26 PM, cyclinglady said:

When was your last endoscopy?  If your small intestine has healed, another autoimmune disorder or illness  may be the cause of your current slightly elevated TTG.  If villi damage is still there, then you should look at refractory celiac disease.   The good news is that most cases of refractory involves exposure to hidden gluten.  

I've only had one endoscopy. Thankfully my ttg is coming down since switching butcher shops and adding back in more of the healing tools that helped to get me into remission the first time. 

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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
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    • Jack Common
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