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I'm Actually Really Scared... Help?


qudzbudz

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qudzbudz Newbie

Okay so basically it was a year ago when I started thinking that I had IBS. However it was about two months ago when I found out that I had a blood test and I am vitamin D deficient and anemic. I do have restless leg syndrome, (which is a symptom for Celiac). I also found out that whenever I ate gluten and wheat, my IBS symptoms were worse.  :wacko:

 

So I went on a gluten free diet for a week and it was amazing. I didn't feel any cramps of bloating... My doctor suggested that I might have Celiac. I had a blood test and it came out negative but she said that they can't rely on just a blood test, so she suggested an endoscopy... At first I was willing to because if I do have Celiac then, I should get diagnosed. However, I am only 16 and I'm not really keen on the idea...  :o

 

I decided that I would have the endoscopy later on when I'm ready but if I do have Celiac and carry on eating gluten, then I could end up with type 1 diabetes and cancer... and that really scared me... I've been eating gluten for a year now since I found out that I might have 'IBS' and so if it is Celiac then... ahhhh I'm so scared. 

 

I've decided to go on a strict gluten-free diet but do you think I'm worrying too much or am I doing the right thing? Also... should I have started the diet earlier on? (I'm such a worry bag, I'm so sorry)

 

Thank you so much :(


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shadowicewolf Proficient

Okay so basically it was a year ago when I started thinking that I had IBS. However it was about two months ago when I found out that I had a blood test and I am vitamin D deficient and anemic. I do have restless leg syndrome, (which is a symptom for Celiac). I also found out that whenever I ate gluten and wheat, my IBS symptoms were worse.  :wacko:

 

So I went on a gluten free diet for a week and it was amazing. I didn't feel any cramps of bloating... My doctor suggested that I might have Celiac. I had a blood test and it came out negative but she said that they can't rely on just a blood test, so she suggested an endoscopy... At first I was willing to because if I do have Celiac then, I should get diagnosed. However, I am only 16 and I'm not really keen on the idea...  :o

 

I decided that I would have the endoscopy later on when I'm ready but if I do have Celiac and carry on eating gluten, then I could end up with type 1 diabetes and cancer... and that really scared me... I've been eating gluten for a year now since I found out that I might have 'IBS' and so if it is Celiac then... ahhhh I'm so scared. 

 

I've decided to go on a strict gluten-free diet but do you think I'm worrying too much or am I doing the right thing? Also... should I have started the diet earlier on? (I'm such a worry bag, I'm so sorry)

 

Thank you so much :(

There is no need to stress out so much :)

 

While a diagnosis is good, if you feel you would do better without it, then go for it. However, from my understanding, you are still on a gluten diet right? If so, i would redo the blood test (as being off of gluten for a week could cause it to have a false negative) and then do the endoscopy.

 

The reason behind this is if you go gluten free for quite some time and then decide you want to be tested, then you would have to do a gluten challenge for several weeks and you may feel even worse then.

moosemalibu Collaborator

I second what shadowicewolf said. If you were gluten free prior to the blood test then you could have had a false negative. In order to get a positive diagnosis you need to be eating gluten prior to the blood test and the endoscopy.

 

It is a personal decision to get the official diagnosis. I went through the gluten challenge for my endoscopy in October. It was horrible - but I definitively know that I HAVE TO BE gluten free forever. It made it more real for me. But if you feel good being gluten free and can maintain it without a diagnosis then do that. But to wait and then get diagnosed later because of the fear of endoscopy -- not worth it. The endoscopy is simple and painless. You absolutely won't have any pain from the biopsies. You will be sedated and it's a quick process.

 

Hope that helped.

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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
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    • trents
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    • Jack Common
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