TTg level high even after 6 years

[Nobody]

I am a 28 years old guy. I was diagnosed with celiac disease 6 years back with a TTG level of greater than 200.  I have been staying off wheat products since then. To be more exact, I found that I couldn't tolerate several nuts, dairy products, corn and several fruits as well. Hence, I have restricted myself to a diet of rice and pulses with vegetables and a small portion of fruit. However, there have been several lapses and I have had consumed gluten-free products that contain lactose/nuts etc over the six years. However, I haven't consumed anything that may possibly contain gluten.

In spite of all that, my TTG level is still around 50. This implies that my small intestine is still inflamed, even after 6 years of staying gluten free. I have had undiagnosed celiac disease for 5 years before that. This means that my small intestine must have been inflamed for the past 11 years. 

Hence, I was wondering if I am at a risk of getting small intestinal cancer?

[cyclinglady]

5 hours ago, Nobody said:

I am a 28 years old guy. I was diagnosed with celiac disease 6 years back with a TTG level of greater than 200.  I have been staying off wheat products since then. To be more exact, I found that I couldn't tolerate several nuts, dairy products, corn and several fruits as well. Hence, I have restricted myself to a diet of rice and pulses with vegetables and a small portion of fruit. However, there have been several lapses and I have had consumed gluten-free products that contain lactose/nuts etc over the six years. However, I haven't consumed anything that may possibly contain gluten.

In spite of all that, my TTG level is still around 50. This implies that my small intestine is still inflamed, even after 6 years of staying gluten free. I have had undiagnosed celiac disease for 5 years before that. This means that my small intestine must have been inflamed for the past 11 years. 

Hence, I was wondering if I am at a risk of getting small intestinal cancer?

Have you had the complete celiac celiac panel?   The DGP test is better for measuring dietary compliance.  Other AI issues could keep your TTG levels elevated.  Here is a reliable information from the University of Chicago:

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There is a greater risk for cancer, but it is rare.  Have other AI issues been ruled out (e.g. Hashimotos Thyroiditis)?  Are you really sure you have been gluten free?   Do you ever eat out?  

 

 

[GFinDC]

Hi Nobody,

Welcome to the forum! 

I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats.

If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel.

I wouldn't worry a lot about getting cancer.  That doesn't happen often.

It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.

 

 

[RMJ]

The risk of a non-celiac getting intestinal lymphoma is extremely tiny.  The risk of someone with refractory celiac disease is higher (I think maybe double?) but 2 x extremely tiny is still extremely tiny, and an elevated antibody level is not enough to say you have the refractory version.  You could have a repeat endoscopy to look for damage.  Are you still having symptoms?