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Is this celiac?


Greek4eva323

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Greek4eva323 Rookie

My endoscopy showed mild duodenal intraepithelial lymphocytosis with preservation of the villous architecture. 

I tested positive for both the DQ2 and DQ8 Celiac genes. I was put in a 1 out of 24 risk for Celiac passed off the gene test results. 

These were the results of my most current celiac blood panel. 

Endomysial IGA

Negative

T-Transglutaminase (Ttg) IGA

Your Value<2 U/mL

Standard Range0 - 3 U/mL

Iga

Your Value398 mg/dL

Standard Range87 - 352 mg/dLFlagH

(In March this was at at 366, now it's up to a 398).

T-Transglutaminase (Ttg)

Your Value6 U/mL

Standard Range0 - 5 U/mLFlagH

Waiting to talk to Gi but curious what others think. 


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knitty kitty Grand Master

Welcome to the club!

(Not diagnostic, just familiar symptomology commonly seen in Celiac Disease).

 

Greek4eva323 Rookie

I just dont know if I should take it as celiac or not? My endoscopy was done when I very first started showing symptoms. Could there have not been damage yet because it was caught at onset?

 

I was hoping the 2nd celiac panel would give me clear cut answers. 😞

Scott Adams Grand Master

It looks like you have a positive blood test for celiac disease: T-Transglutaminase (Ttg) 6 U/mL (Standard Range 0 - 5 U/mL Flag H), and you have both genetic markers for it, and these two things mean that you most likely have celiac disease. Even if your biopsy were negative I think you should still consider going gluten-free.

Were you eating 2 slices worth of wheat bread per day for 6-8 weeks before your blood test? If not your values would have likely been higher. Be sure to keep eating this much gluten daily for at least 2 weeks before a biopsy.

Greek4eva323 Rookie
1 hour ago, Scott Adams said:

It looks like you have a positive blood test for celiac disease: T-Transglutaminase (Ttg) 6 U/mL (Standard Range 0 - 5 U/mL Flag H), and you have both genetic markers for it, and these two things mean that you most likely have celiac disease. Even if your biopsy were negative I think you should still consider going gluten-free.

Were you eating 2 slices worth of wheat bread per day for 6-8 weeks before your blood test? If not your values would have likely been higher. Be sure to keep eating this much gluten daily for at least 2 weeks before a biopsy.

 

 

I went gluten free for only 2 weeks after my biopsy, blood test, and gene test. Then I got a 2nd opinion began eating gluten again for 4 weeks and redid the blood panel. 

Scott Adams Grand Master

What does your doctor say?

Awol cast iron stomach Experienced
(edited)
On 6/18/2022 at 12:40 PM, Greek4eva323 said:

My endoscopy showed mild duodenal intraepithelial lymphocytosis with preservation of the villous architecture. 

I tested positive for both the DQ2 and DQ8 Celiac genes. I was put in a 1 out of 24 risk for Celiac passed off the gene test results. 

These were the results of my most current celiac blood panel. 

Endomysial IGA

Negative

T-Transglutaminase (Ttg) IGA

Your Value<2 U/mL

Standard Range0 - 3 U/mL

Iga

Your Value398 mg/dL

Standard Range87 - 352 mg/dLFlagH

(In March this was at at 366, now it's up to a 398).

T-Transglutaminase (Ttg)

Your Value6 U/mL

Standard Range0 - 5 U/mLFlagH

Waiting to talk to Gi but curious what others think. 

I am labeled NCGS. I had high amounts of eosinophils and lymphocytes. I had inflammation starting at my esophagus, my stomach was horrible to the naked eye, then they got to the intestines. 

They initially were concerned I might have Barrett's esophagus although I don't match the particular profile. 

The pathology results revealed it was not Barrett's. Based on my other results negative for IgE mediated wheat allergy, and no villi damage not considered celiac. (Full disclosure side note I had to undergo a 2 week gluten challenge I was unable to complete the full 2 weeks.)

I am currently diagnosed NCGS with additional food intolerances, coupled with environmental allergies. My family is on the allergy/asthma spectrum, and I have a Celiac cousin. 

With me it was rule out IgE wheat, and Celiac with both scopes. From there it was food elimination diet to determine food intolerances. Even though I am not celiac I get a ton of symptoms gi, skin/rash/flushing, brain fog, neurological, edema, visible distension/bloating, my organs also experience inflammation.  So they were able to witness I am intolerant.

Best wishes on your journey to diagnosis, and healing.

 

Edit forgot neuropathy symptomology which is why I initially went self imposed gluten-free, prior to testing .( I was misdiagnosed IBS based on gi symptoms only for 20 plus years prior.) 

Edited by Awol cast iron stomach
Forgot symptom

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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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