Is It Celiac Disease? Help!

[alber2410]

Hi,

I decided to join this forum because I'm being tested for celiac

disease, but doctors don't seem to agree on whether I have it or not,

and I'm getting kind of desperate with this situation. Maybe some of

you can help me with this.

I'm a 44 y/o male and I've been very healthy all my life. In 2007 I had

to take care of my 94 y/o terminally ill grandmother till she died in

April 2008. I had to work at home, attending to all her needs, while

finishing my masters degree in Computer Science at the same time, which

was very stressful indeed.

About a month after her death, suffered from several acute episodes of

diarrhea and thought I had some kind of parasite (Giardia for one,

which is very common in my country). I have a cousin who is a

gastroenterologist and he prescribed Metronidazole for 10 days (3 times

a day) with folic acid and B12. Incredibly, I had a complete remission

of symptoms for about a month. But... one day while I was having a big

piece of some kind of very fatty cheese I felt an urgent need to

defecate and had to go to the bathroom at once. The stool was very dark

and the smell was terrible. Then the same situation repeated with milk,

cream cheese, ice cream (chocolate), soy sauce, red meats and black

beans and peas (when I ate dairy products the stool was dark and smelly

with soy souce and red meat, I had watery diarrhea)

My cousin prescribed another Metronidazole cycle, but this time I did

not notice any improvement. He told me he thought I had developed

Irritable Bowel Symdrome because of all the stress I had been through

with my grandmother. Then he had to travel abroad for 3 months and my

symptoms started getting worse. I had to seek another doctor, because I

was starting to get really worried.

I had all kinds of blood and stool tests. My blood tests were all

normal, except for the antigliadin antibodies which were positive. My

stool tests were pathologic: i had bacterial overgrowth and neutral fat

in the stool, but no Giardia or other important parasites (except for

Blastocystis Hominis, but my doctor told me not to worry about that

one). After that, she told me I had to undergo jejunal biopsy with a

Crosby capsule (she didn't tell me why). I was so worried cause I

thought she was looking for some kind of tumor, but some colleague told

me about celiac disease and that she was probably looking for gluten

intolerance. When I read what that was and suddenly recalled that I had

been eating large amouts of oats during the las 5 months I became

really alarmed. So alarmed that I stopped eating gluten at once (so I

was gluten free for about 12 days before undergoing biopsy).

My biopsy results were:

Partial villous atrophy with infiltration of inflammatory cells in the

lamina propria (lymphocytes, plasmocytes, and a LARGE number of

eosinophils). Normal crypts and enterocytes; normal mucosal brush

border with no increment in the amount of intraepithelial lymphocytes.

When the doctor saw the biopsy results she told me I did not have

celiac disease and prescribed 15mg of folic acid/day + B1, B6 and B12

weekly. But then I read you had to keep eating gluten before undergoing

biopsy. My question is:

Can 12 days of gluten free diet (after months of eating large amounts

of oats) alter the results of a celiac biopsy so dramatically? How long

does it take for the crypts to become normal? And what about

intraepithelial lymphocytes? Can they go back to normal in just 12 days

of gluten free diet? Should I retake the biopsy?

Thanks for your help!!!!!!!

Alberto

[Lisa]

Welcome Alberto! Glad you have found us.

Have you been testing with the Celiac Blood Panel?

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

I would go on a strict gluten free for a months time. If you see dietary improvement, it would confirm Celiac Disease in addition to your villious atrophy.

If you choose to continue testing, do not go gluten free until all testing is over.

[Lisa]

Open Original Shared Link

I also found this.

If Celiac Disease is not your answer, I would encourage you to continue to pursue testing until you find an answer.

Good Luck.

[psawyer]

My biopsy results were:

Partial villous atrophy with infiltration of inflammatory cells in the

lamina propria (lymphocytes, plasmocytes, and a LARGE number of

eosinophils). Normal crypts and enterocytes; normal mucosal brush

border with no increment in the amount of intraepithelial lymphocytes.

<<snip>>

Can 12 days of gluten free diet (after months of eating large amounts

of oats) alter the results of a celiac biopsy so dramatically? How long

does it take for the crypts to become normal? And what about

intraepithelial lymphocytes? Can they go back to normal in just 12 days

of gluten free diet? Should I retake the biopsy?

Welcome.

12 days would likely affect blood testing for antibodies, but would be less likely to impact the biopsy, as recovery there does not really begin until the antibodies are gone.

The biopsy showed "Partial villous atrophy." Well, something caused that, didn't it?

I'm not a doctor, but I think this is one of those situations where the question becomes how much damage does there have to be before we decide that there is a problem, i.e., celiac disease. My understanding is that any detected amount of villous atrophy is diagnostic.

[Lisa]

Open Original Shared Link

Pitfalls in the biopsy diagnosis of celiac disease

These include: 1. Inadequate number of biopsy pieces. The disease is patchy, this combined with the fact that all biopsy pieces may not be oriented sufficiently to assess the crypt to villous ratio means that at least 4 to 6 biopsy pieces need to be taken. Biopsy of the descending duodenum is sufficient. 2. Over-interpretation of villous atrophy because of poor orientation of the biopsies. If the pieces are not sufficiently oriented to assess the presence of, or degree of villous atrophy deeper cuts of the tissue block need to be ordered. 3. If the biopsy interpretation does not match either the clinical impression or serologic results the biopsy should be re-interpreted by a pathologist expert in the interpretation of gastrointestinal pathology.

Causes of villous atrophy apart from celiac disease

In children less than two years old, there are several causes that include cows milk allergy, soy allergy, eosinophillic gastroenteritis, and viral gastroenteritis. In adults, HIV enteropathy and tropical sprue are the most common causes of villous atrophy apart from celiac disease. Radiation may cause a similar picture as well as autoimmune enteropathy. Other food intolerances have been reported though are exceptionally rare; they include a single case report of fish and chicken intolerance [18].

[alber2410]

Thanks for your reply Momma Goose... As a matter of fact, I took the Anti-Transglutaminase test about a month ago and I'm still waiting for the results. My doctor told me that to have celiac disease you should have "villous atrophy" + "crypt hyperplasia" + "increased number of intraepithelial lymphocytes" and I only had the first condition. But I was worried that the 12 days I spent gluten free could have made the crypt hyperplasia go away... Very interesting article btw!

[ravenwoodglass]

Hi,

My biopsy results were:

Partial villous atrophy with infiltration of inflammatory cells in the

lamina propria (lymphocytes, plasmocytes, and a LARGE number of

eosinophils). Normal crypts and enterocytes; normal mucosal brush

border with no increment in the amount of intraepithelial lymphocytes.

Thanks for your help!!!!!!!

Alberto

IMHO when you combine the villious atrophy with the large number of eosinophils etc what you have is a positive biopsy. In addition your positive blood work for antibodies combined with the biopsy results makes it pretty certain that you are one of us. The villi actually have a pretty fast turnover so yes your being gluten free for 12 days before the test could have impacted the results. You could ask for another pathologist to take a look at the biopsy slides, you could continue to eat gluten and then go back and get rebiopsied at a later date when you have been sick for a while longer or you could just go gluten free.