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All Test Indicates I have Celiac, but I have no symptoms when I eat gluten.

David Jones
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David Jones Newbie
David Jones
Posted

The only symptom I have is I have NO villi. I have been on a gluten-free diet for many years and as far as I know, we have nothing in the house that contains gluten.  
The only thing that keeps me alive is TPN.  
I have been a patient at MAYO Clinic for over three years. The pathologist says that the Villa atrophy pattern was not characteristic of Celiac.

Mayo has tried - Budesonide, Entyvio and Stelara. No treatment has restored my Villi.

Has anyone else had this problem?

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Scott Adams Grand Master
Scott Adams
Posted

I'm sorry to hear about what you’re going through—it sounds incredibly challenging. It’s not common to have such severe villous atrophy without the typical celiac symptoms, especially after being strictly gluten-free. It’s good that you’re under the care of the Mayo Clinic, but I can understand how frustrating it must be that the treatments haven’t restored your villi yet. In cases like yours, where typical treatments for celiac don’t work, it might be worth exploring other rare causes of villous atrophy, such as refractory celiac disease, autoimmune enteropathy, or other forms of enteropathy. Has your medical team discussed any alternative diagnoses or treatments with you? You’re definitely not alone in dealing with complex cases like this—there are communities online that might have members with similar experiences. I hope you find some answers and relief soon.

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:

 

 

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      my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening  thank you for attaching this, could this happen randomly even after being gluten-free for so long ? my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening 
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