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Villi Atrophy, Negative Blood Tests

northernsunshine

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northernsunshine Newbie
northernsunshine
Posted

I've been searching the forum for information on my test results. First off, the symptoms I was having that led me to visit a GI doc was nausea after eating, a constant pain in my upper right abdomen, and fatigue. I was scoped for a suspected ulcer. Everything looked great. The biopsy, however, showed villi atrophy and chronic inflammatory cells. The antibody tests for celiac were negative. My doc decided to test for the genes and I am awaiting those results. I have a suspicion that although I may not have celiac, whatever has damaged my villi makes eating gluten a problem for me. The reason I'm beginning to think this way is that I decided to go gluten-free just in case after the blood was drawn for the antibody tests. After about a week, I began to feel better. Then last week while on a ski vacation I went a bit crazy and ate whatever I wanted which included quite a bit of baked goods and beer. I ended up quite sick. I guess my purpose for posting is in case there in anyone in the group who has had similar test results and if it was ever determined what damaged their villi and if their going gluten-free helped with the symptoms.

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northernsunshine Newbie
northernsunshine
Posted
  • Author
I've been searching the forum for information on my test results. First off, the symptoms I was having that led me to visit a GI doc was nausea after eating, a constant pain in my upper right abdomen, and fatigue. I was scoped for a suspected ulcer. Everything looked great. The biopsy, however, showed villi atrophy and chronic inflammatory cells. The antibody tests for celiac were negative. My doc decided to test for the genes and I am awaiting those results. I have a suspicion that although I may not have celiac, whatever has damaged my villi makes eating gluten a problem for me. The reason I'm beginning to think this way is that I decided to go gluten-free just in case after the blood was drawn for the antibody tests. After about a week, I began to feel better. Then last week while on a ski vacation I went a bit crazy and ate whatever I wanted which included quite a bit of baked goods and beer. I ended up quite sick. I guess my purpose for posting is in case there in anyone in the group who has had similar test results and if it was ever determined what damaged their villi and if their going gluten-free helped with the symptoms.
northernsunshine Newbie
northernsunshine
Posted
  • Author

I guess I can now go over to the Post-diagnosis forum. Just a few minutes ago my doctor called with the results of my genetic testing. I carry DQ2. This along with the biopsy seems to confirm celiac. I'm a bit shocked and relieved.

cruelshoes Enthusiast
cruelshoes
Posted

Celiac is the main cause for villi damage, but there are other causes. Some of the other possibilities rarely cause flatened villi, and are usually found in conjunction with Celiac Disease or immuno-deficiencies.

https://www.celiac.com/articles/50/1/Main-C...illi/Page1.html

It is also very common for people to have negative bloodwork and positive biopsy results. I personally would place more credence in the biopsy results than the bloodwork, as the biopsy takes a sample of the intestinal structure itself.

Open Original Shared Link

Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative

This means that sometimes if your villi are still in the early stages of damage, your bloodwork may be negative - for now. Negative bloodwork does not mean you don't have celiac disease.

Good luck on getting the answers you need.

tom Contributor
tom
Posted

Can't find the link now, but I remember one Columbia U study which found that blood test LESS accurate w/ more severe villous atrophy.

I've never heard a theory as to why.

nb-canada Apprentice
nb-canada
Posted
Can't find the link now, but I remember one Columbia U study which found that blood test LESS accurate w/ more severe villous atrophy.

I've never heard a theory as to why.

Is this the post?

https://www.celiac.com/articles/817/1/False...ophy/Page1.html

cyberprof Enthusiast
cyberprof
Posted

Northernsunshine,

Welcome to the Club!

I had a positive biopsy first then negative blood tests. i had exactly the same symptoms that you did and was also scoped for an ulcer- the doc took biopsies just to be on the safe side and boy am I happy he did. I didn't have flattened villi, only changes at the cellular level but I wouldn't want to risk waiting for villi damage!

I hope you heal soon and start to feel good.

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northernsunshine Newbie
northernsunshine
Posted
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Northernsunshine,

Welcome to the Club!

I had a positive biopsy first then negative blood tests. i had exactly the same symptoms that you did and was also scoped for an ulcer- the doc took biopsies just to be on the safe side and boy am I happy he did. I didn't have flattened villi, only changes at the cellular level but I wouldn't want to risk waiting for villi damage!

I hope you heal soon and start to feel good.

Thank you! I'm so grateful my doc took biopsies as well.

northernsunshine Newbie
northernsunshine
Posted
  • Author
Celiac is the main cause for villi damage, but there are other causes. Some of the other possibilities rarely cause flatened villi, and are usually found in conjunction with Celiac Disease or immuno-deficiencies.

https://www.celiac.com/articles/50/1/Main-C...illi/Page1.html

It is also very common for people to have negative bloodwork and positive biopsy results. I personally would place more credence in the biopsy results than the bloodwork, as the biopsy takes a sample of the intestinal structure itself.

Open Original Shared Link

This means that sometimes if your villi are still in the early stages of damage, your bloodwork may be negative - for now. Negative bloodwork does not mean you don't have celiac disease.

Good luck on getting the answers you need.

Thank you for those links. It does explain things in my case. I'm looking forward to my new lifestyle and getting better. It has been hard these last few months. I ignored my symptoms for quite a while but I finally felt too bad to continue on that path.

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