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Confusing results

Mmar
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Mmar Newbie
Mmar
Posted

Hello! I have been Celiac and following a strict gluten-free diet for over 20 years. I recently had an endoscopy/colonoscopy for chronic diarrhea that I’ve had for about 6 months. I was diagnosed with microscopic colitis. However, my doctor is also concerned that the endoscopy showed villous atrophy in my small intestine. This is confusing because my ttg-iga was 6.7 a few weeks ago! My doctor is sending me for more thorough labs, but I am wondering two things: 

1. is it possible that I am ingesting gluten with a ttg that low? I am very diligent, but the doctor implied that the finding was due to me ingesting gluten. 

2. Does anyone know of other things that can cause villous atrophy? I was under the impression that the ttg antibodies were what caused it, but if mine is low, what could be causing the atrophy? 
 

thank you!

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trents Grand Master
trents
Posted
(edited)

 

Edited by trents
Scott Adams Grand Master
Scott Adams
Posted

If you eat out at restaurants you might be getting gluten in your diet. 

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

  • 2 weeks later...
Wends Apprentice
Wends
Posted
On 8/9/2024 at 12:24 AM, Mmar said:

Hello! I have been Celiac and following a strict gluten-free diet for over 20 years. I recently had an endoscopy/colonoscopy for chronic diarrhea that I’ve had for about 6 months. I was diagnosed with microscopic colitis. However, my doctor is also concerned that the endoscopy showed villous atrophy in my small intestine. This is confusing because my ttg-iga was 6.7 a few weeks ago! My doctor is sending me for more thorough labs, but I am wondering two things: 

1. is it possible that I am ingesting gluten with a ttg that low? I am very diligent, but the doctor implied that the finding was due to me ingesting gluten. 

2. Does anyone know of other things that can cause villous atrophy? I was under the impression that the ttg antibodies were what caused it, but if mine is low, what could be causing the atrophy? 
 

thank you!

Hi. Yes villous atrophy can be caused by something else. In children it is well known to be caused by milk protein and soy protein as well as gluten, in those susceptible. It can also be caused and temporary to a gut infection in some. In the context of celiac disease it’s possible you may be unknowingly ingesting gluten - and that’s always what doctors will first suspect, it only takes tiny amounts and depends on your individual sensitivity. If you eat any packaged gluten free food there was a study showing levels of gluten are present in them at varying amounts but most within the “gluten free” Codex allowance of 20 parts per million; but some above. Depending on sensitivity this may or may not be a problem for most celiacs. But for some that rely on packaged foods the dose can add up over time - think gluten-free cereal for breakfast, gluten-free sandwich for lunch, gluten-free pasta for dinner etc. Also if you’re a coffee drinker this could be a source of cross contamination of gluten - instant coffee, or coffee from an outlet depending on handling and what the machine has come in contact with. Alternative milks such as oat can be problematic in this situation. There’s cases in the UK of “glutening” because non gluten-free oat milk was used before on a machine 😳 .

If gluten free is strict and it’s not likely unknown ingestion, The other possibility is cross reactive foods. The body can recognise similar proteins/peptides similar to gluten. Casein in milk and dairy is known for this, approximately 50% of Celiacs are reported to react to milk like gluten. Then there are approximately 20% of celiacs that react to non-contaminated certified gluten free oat cereal as if gluten. There is also a study from Mexico showing maize / corn prolamins can be recognised by some celiacs as if gluten. It can be a bit of a rabbit hole and really depends on genetic susceptibility and ancestral history. The research shows different gluten peptides react with different genes (DQ2 for example is the highest risk and likely because there are far more reacting peptides than compared to DQ8 or rarer alleles).

Hopefully you are guided by your doctor to figure it out. If you consume dairy? There are a few case reports of celiac children reacting to milk as well as or instead of (milk intolerance) and villous atrophy remained until the dairy and or gluten was eliminated. Most were also asymptomatic on the gluten free diet and it was only because of repeat endoscopy and blood testing they investigated. 

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