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northernsunshine

Villi Atrophy, Negative Blood Tests

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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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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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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.

http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

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.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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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.


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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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.


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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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.

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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.

http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

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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