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Hashimoto's and gluten sensitivity.

Cry123

By Cry123
in Related Issues & Disorders

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Cry123 Newbie
Cry123
Posted

Hi, I was diagnosed with Hashimoto's after my daughter was born, but had a goiter big enough since 12 that I tricked my stepsister into thinking I'd been born a boy.  I went over a decade asking doctors why I had an Adam's apple and no one could tell me.  And we were middle class folks with extremely good health insurance.  I was not a healthy kid.  Anyway, I had been reading a lot about the connection between Hashimoto's and gluten sensitivity.  My TSH came back showing I need to adjust my meds again, so I went in to see the doctor about that.  While there I asked about gluten and Hashimoto's, he wasn't all that convinced but I reminded him I have had problems with diarrhea all my life off and on, but the last few years it's been mostly on.  And then he agreed it might be worth just going gluten free for a while but not to get fixated because people do that when they don't need to.  I came out of there feeling a bit of a fool for even bringing it up but made the decision to give it a try.  So after a few days I woke up feeling strangely energetic.  Worked in the garden, went shopping, came home did more garden work then made dinner.  Doin' good, then today I wake up feeling like total hell, a few trips to the bathroom, back pain, joint pain and extreme anxiety - we did lose everything in the fires last year here in Oregon so wind now make all of us anxious.  But it was that anxiety that comes with extreme brain fog also.  I was so disappointed, then I remembered - I was making dinner for everyone very last minute and I threw together pasta sauce... and made pasta for everyone else...testing it along the way. My annoyingly long story leads me to - is it possible to notice feeling better so soon, then return of gluten sensitivity that fast.  I seriously doubt I have Celiacs, more gluten sensitivity maybe.  

Thank you so much to anyone who reads this.

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trents Grand Master
trents
Posted
(edited)
46 minutes ago, Cry123 said:

Hi, I was diagnosed with Hashimoto's after my daughter was born, but had a goiter big enough since 12 that I tricked my stepsister into thinking I'd been born a boy.  I went over a decade asking doctors why I had an Adam's apple and no one could tell me.  And we were middle class folks with extremely good health insurance.  I was not a healthy kid.  Anyway, I had been reading a lot about the connection between Hashimoto's and gluten sensitivity.  My TSH came back showing I need to adjust my meds again, so I went in to see the doctor about that.  While there I asked about gluten and Hashimoto's, he wasn't all that convinced but I reminded him I have had problems with diarrhea all my life off and on, but the last few years it's been mostly on.  And then he agreed it might be worth just going gluten free for a while but not to get fixated because people do that when they don't need to.  I came out of there feeling a bit of a fool for even bringing it up but made the decision to give it a try.  So after a few days I woke up feeling strangely energetic.  Worked in the garden, went shopping, came home did more garden work then made dinner.  Doin' good, then today I wake up feeling like total hell, a few trips to the bathroom, back pain, joint pain and extreme anxiety - we did lose everything in the fires last year here in Oregon so wind now make all of us anxious.  But it was that anxiety that comes with extreme brain fog also.  I was so disappointed, then I remembered - I was making dinner for everyone very last minute and I threw together pasta sauce... and made pasta for everyone else...testing it along the way. My annoyingly long story leads me to - is it possible to notice feeling better so soon, then return of gluten sensitivity that fast.  I seriously doubt I have Celiacs, more gluten sensitivity maybe.  

Thank you so much to anyone who reads this.

If you have celiac disease or gluten sensitivity, once you go off of gluten for any length of time you become more intolerant of it than you were when consuming it daily. Getting "glutened" after being off of it typically makes you sicker than a dog.

What makes you think you have gluten sensitivity and not celiac disease? The symptoms are largely the same. 

Your physician gave you a bum steer in telling you to go off gluten as a trial. Now, if you go in for testing after having started the gluten free diet, the testing will be invalid. For the antibody blood test you would need to be eating regular amounts of gluten daily (equivalent of two slices of wheat bread) for 6-8 weeks and for the endoscopy/biopsy you would need to be back on daily gluten for at least 2 weeks.

Edited by trents
Cry123 Newbie
Cry123
Posted
  • Author

Thank you Trents...why don't I think I have celiacs?  Just really hoping, but honestly I don't really care - if I feel better staying clean of gluten I will do it.  It’s the social aspect that gets me, I'm shy as it is around new people, I fear having a dietary restriction will bring unwanted scrutiny and attention.  

Just have to remember not to test that pasta or accidentally eat a cracker.  My daughter is a pastry chef and has many of the same symptoms, much worse though, so now she is wondering and considering experimenting with gluten free recipes. 

trents Grand Master
trents
Posted

Yes, the social aspect is the hardest dimension of having a gluten disorder. Friends and family can be hard to get onboard. It requires patient education and grace. It's a good idea to prepare ahead of time with some gracious responses to the skepticism of family and friends. 

By the way, if you have celiac disease, there is a 44% chance that your first degree relatives will have or will develop it as well. So your daughter has an almost even chance of having what you have.

Scott Adams Grand Master
Scott Adams
Posted

The only way to find out for sure would be to get tested for celiac disease. It’s a simple blood test so perhaps you should do that before you go Gluten-Free? You need to be eating gluten daily for at least 6 to 8 weeks before any blood test.

Here are some articles about celiac disease in relation to thyroid issues:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/thyroid-pancreatic-disorders-and-celiac-disease/

KylieG Newbie
KylieG
Posted
On 6/26/2021 at 9:34 AM, Cry123 said:

Hi, I was diagnosed with Hashimoto's after my daughter was born, but had a goiter big enough since 12 that I tricked my stepsister into thinking I'd been born a boy.  I went over a decade asking doctors why I had an Adam's apple and no one could tell me.  And we were middle class folks with extremely good health insurance.  I was not a healthy kid.  Anyway, I had been reading a lot about the connection between Hashimoto's and gluten sensitivity.  My TSH came back showing I need to adjust my meds again, so I went in to see the doctor about that.  While there I asked about gluten and Hashimoto's, he wasn't all that convinced but I reminded him I have had problems with diarrhea all my life off and on, but the last few years it's been mostly on.  And then he agreed it might be worth just going gluten free for a while but not to get fixated because people do that when they don't need to.  I came out of there feeling a bit of a fool for even bringing it up but made the decision to give it a try.  So after a few days I woke up feeling strangely energetic.  Worked in the garden, went shopping, came home did more garden work then made dinner.  Doin' good, then today I wake up feeling like total hell, a few trips to the bathroom, back pain, joint pain and extreme anxiety - we did lose everything in the fires last year here in Oregon so wind now make all of us anxious.  But it was that anxiety that comes with extreme brain fog also.  I was so disappointed, then I remembered - I was making dinner for everyone very last minute and I threw together pasta sauce... and made pasta for everyone else...testing it along the way. My annoyingly long story leads me to - is it possible to notice feeling better so soon, then return of gluten sensitivity that fast.  I seriously doubt I have Celiacs, more gluten sensitivity maybe.  

Thank you so much to anyone who reads this.

Hi there!

 

I have Hashimotos and NCGS. I’ve only been on the journey since February but I have felt so good just a few days after I went gluten free….but whenever I accidentally get ‘glutened’ I get the aches and pains come back, massive anxiety and sometimes brain fog and muscle fassiculations.

It’s a massive learning curve. I just need to stop putting things in my mouth without thinking about it haha! Good  luck! 😊

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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!
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      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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