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Help Understanding Negative Biopsy Results


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#1 rachel_gf

 
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Posted 30 March 2010 - 01:39 AM

I received my biopsy results. The biopsy took 3 samples. The doctor who did the lab work on the biopsy said celiac disease was NOT indicated - no villous atrophy and no intra-epithelial lymphocytes.

But the doctor did note some other things which I assume were noted because they are abnormal. Please note that I am living outside the US right now so I had to translate this into English.

Presence of a small regenerative foyer (translation: site? location?), with elongated glands in a discreetly inflammatory chorion.

There is a small foyer (translation: site? location?) or crypts are elongated, regenerative, with increased numbers of mitoses.


I have tried to call my doctor about 10 times for an explanation of what this means, if any other disease is indicated, etc. But no luck in getting the doctor to call back yet.

I have tried to look up some of these words online. Elongaged or enlarged crypts seems to be sometimes mentioned on sites discussing celiac biopsies.

I had been eating a low-wheat diet for a few years, but did a three-month (miserable, miserable) gluten challenge before these test results. I was then gluten-free for about 5 weeks - I couldn't take it anymore. The doctor who I saw for the biopsy said I needed to eat gluten for the week before the biopsy -- I ate gluten for two weeks before. After the biopsy, I went gluten-free again and am feeling MUCH better.

Other test results:
1. Enterolab: positive for gluten sensitivity (Fecal anti-gliadin IgA: 53 units, Fecal anti-tissue transglutaminase IgA: 14 units, quant micro fecal fat score: normal less than 300 units)
2. Prometheus Celiac Plus blood panel: all negative (normal)
3. Prometheus Celiac Plus genetic results: DQ2 heterodiemer, HLA-DQA1*0201/DQB1*02 - US doctor said this means I'm at risk for gluten sensitivity but have a lower risk of celiac than the general population
4. Doctor who performed the endoscopy said everything looked normal from a visual perspective.

At this point, I'm quite sure I have some problem with wheat -- either a wheat allergy, gluten sensitivity, or (early-stage?) celiac. I'm committed to staying gluten-free, but if I do have some sort of early-stage celiac would like to know so that I can be even more careful.

If you have any ideas about what the doctor's biopsy notes mean, it would be much appreciated. I would like know also if these biopsy results (elongated crypts, inflamed chiron, etc.) indicate some sort of other intestinal problem.

Thank you all for the help in advance. This forum has been a great way to learn and get support!
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#2 nora_n

 
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Posted 31 March 2010 - 06:00 AM

Your being gluten free most likely affected the biopsies and blood tests.
All of them are gauged for eating a lot of gluten and for a long time. Especially the blood tests.

The gut cells are regenerating very fast, too, so your eating gluten free before the biopsy really most likely caused the strange biopsy.
ONe week definitely is not enough time to cause a typical positive biopsy. The least time I have read anywhere is 6 weeks, and when previously diagnosed children were put back on gluten, it took at least six weeks but often more time, but with time everyone relapsed.

Crypt hyperplasia is one of the hallmark findings of celiac.
Google marsh scale celiac.

The pathologist should ahve been notified you were off gluten then badk on for one week.

The enterolab antibody test was very positive.

the gene test:
DQ2,2 (beta chain 0202, alpha chain 0201) is less celiac prone than the other celiac prone genes, but there have been several people here with 2,2 who were symptomatic.

I wonder what your other gene is. Everyone has two.
Some people have phoned their labs and asked, and they did have the results, just that they did not report them...
I think that they would have reported if you had 0501 or any 05* alpha chain, and that was the reason for testing the alpha chains at all, to see if there was a celiac prone 05* alpha chain.

You can see the charts of the most common DQ genes at wikipedia, type in HLA DQ in en.wikipedia.org
and there should be a small bit on DQ2,2 somewhere explaining the risk for celiac with DQ2,2

Anyway, there have been not so few people here with other genes than DQ2 and 8 and more or less severe celiac symptoms and other illnesses caused by gluten. The gut bit is not the most severe thing with gluetn intolerance; all the other issues caused by gluten are. And one or two percent do not have the celiac genes nor half genes.
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#3 rachel_gf

 
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Posted 01 April 2010 - 01:40 AM

Hi Nora

Thank you very much for your reply. I really appreciate it. Thanks also for the thoughts on DQ2,2.

I guess there are two ways to interpret my results: I have gluten sensitivity but not celiac, or I have celiac even though not all signs were present. I suppose it doesn't make a difference because it's quite clear gluten is not doing anything good to me!

I have been trying to figure out if the "elongated crypts" mean exactly the same thing as "crypt hyperplasia" -- the translation between languages makes this difficult to find out if there is some subtle difference. I've done a bit more reading and I do think it's the same -- I agree with you. For example: http://www.docguide....52573870056180B

Also, in the bit of reading I've done (such as here: http://Spammers Use This To Link To Spam.com/?Celiac-Disease-Biopsy-Explained---Part-II&id=315579) it seems that crypt hyperplasia can be a sign of celiac disease, but others say it is not specific to celiac disease.

The crypts can become enlarged (crypt hyperplasia) in response to stimulus of injury or perceived threat of invasion to the body. White blood cells called lymphocytes are activated and sent up from the crypt areas to the tips of the villi. This results in what is termed intra-epithelial lymphocytosis or increased intra-epithelial lymphocytes (IELs). This is the hallmark of celiac disease and the earliest sign of gluten sensitivity. It is not however specific for celiac disease or gluten sensitivity.


I think it's a bit strange that I have something like crypt hyperplasia but not IELs. But maybe the crypt hyperplasia comes first and the IELs later.

I was also afraid that the gluten-free would affect the results, though two doctors said 4-5 weeks gluten-free would not make a difference as healing would take months. I know there are folks on this board who would definitely disagree with that! I was not patient enough and was tired of feeling rotten.

Here was the timeframe:
- 2005: noticed I had a wheat sensitivity, reduced wheat (never eliminated) but still ate plenty of spelt, kamut, rye
- 2009, October: started gluten challege
- 2009, November: took Enterolabs test (positive for gluten sensitivity)
- Dec 30: took Prometheus Celiac Plus panel (all negative), was absolutely miserable, thought I could get a biopsy right away and doctor said a few weeks gluten-free would affect it
- February: 2 weeks gluten challenge, then biopsy, then went gluten-free again

I was only gluten-free for about 4-5 weeks before the Feburary gluten challenge.
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