<<Disclaimer: Verify this information before applying it to your situation.>>
List members:
Thank- you to all who responded. I was overwhelmed by how many of you
responded and very thankful for your words of encouragement. The
following is a summary of some of your responses. Many of you said very
similar things, so I just cut and pasted a few comments; I received over
60 emails.
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...you should never have been GF before the biopsy...obviously, you
healed too much to show damage. and 2.response to the diet is another
way of diagnosing.
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...candida yeast infections often have the same symptoms as gluten
intolerance - and eliminating gluten from you diet may retard the yeast
- explaining the improvement you mentioned.
Take a look at:
http://www.candidapage.com/cccomp.shtml - comparing symptoms of candida and
gluten intol. Form more general info on yeast issues, look at:
http://www.panix.com/~candida/
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I've heard about a challenge where they insert gluten into the intestines
and then test. There's also a cell test (swab on the inside of your
cheek) that can give you a definite "no" to celiac -- if you don't have
the gene you don't have the disease, if you do have the gene you might
have the disease.
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>From what I understand, sometimes they miss the damage to the villi.
(You might ask for the slides to be sent to University of Maryland for
them to read them.)
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There is an other good site with caring people to answer your
questiions:
http://forums.delphi.com/celiac/start/
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What lab did the biopsy interpretation? There are only a few who are
qualified to read the results. Also, your GI doctor who performed the
biopsy must be experienced and know to take between 10 and 15 samples
from the correct portion of the jejunum. These biopsies can also come
back false negative because of inexperience of the doctors and labs
interpreting the results.
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You might want to have your doctor run a blood test to check the size of
your red blood cells. If they are enlarged, it denotes a malabsorption
problem, signifying celiac. Also have him run a stool exam, testing for
fat in your stool. If there is a significant amount of fat (like 3 times
what should be there), that will also signify celiac. Those two tests,
plus the fact that the gluten-free diet makes your condition improve
significantly, would show that you indeed do have celiac.
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Neither test is 100% reliable. The biopsy is generally considered
better, but it can be screwed up, too. For example- celiac lesions in
the small bowel are patchy. A proper biopsy takes many samples from
various areas. If the doctor doing the biopsy doesn't know that, it can
be missed.
Another example- total villous atrophy is easy to see, but partial
atrophy calls for judgement. If an inexperienced pathologist is on the
case, he might miss CD.
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I would strongly recommend you get a second opinion on the biopsy
results.
Where did your dr. send the pathology specimens? I would urge you to
send them to a lab experienced in doing these tests. You can arrange to
have them sent to the Unive. of MD. Celiac research center. They are
expert in these tests. Also did the lab report on the rate/amount of
interepithelial lymphocytes. INflammation could be the beginning of the
CD process and so you need someone with expert eyes to look at your
specimen.
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1)They may not have taken enough samples when they did the biopsy- I've
heard some people say they need at least 3 dozen from different places
in your intestines!
2) they probably took samples only from the upper part of your
intestines, nearer
to your stomach - the lower part may be damaged
3) you may not have been back on gluten long enough to re-damage your
intestines
4) A BIG REASON: inexperienced pathologist / lab.
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1) You can send your biopsy slides to a lab that specializes in GI
disorders and have them evaluate the biopsy (a second opinion). I send
mine to :
Prometheus, Inc.
5739 Pacific Center Boulevard
San Diego, California 92121
(619) 824-0895
Toll Free (888) 423-5227
Fax: (619) 824-0896
2) Get a food allergy blood test using the ELISA testing method. It is
an 88 food panel and has gluten, wheat, barley and rye as some of the
things to test for. If these come out positive for allergy, and you have
to avoid them, does it really matter if you call it Celiac or wheat
allergy ? STAY AWAY FROM THE GLUTEN!!!
3) Change doctors. You might indeed have something else wrong. But if
gluten makes you so sick, don't eat it. I had to change doctors three
times to get a proper diagnosis.
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There is a Dr. FIne in Dallas www.finerhealth.com who has developed a
stool test for CD that is supposed to detect CD earlier than the blood
tests or biopsy.
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...these [blood] tests err more on the side of false negatives rather
than false positives (in other words, if you have negative blood tests
you could still have celiac, but if you have positive blood tests it is
very unlikely that you don't have celiac.)
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I would contact Dr. Alessio Fasano at the University of Maryland
www.celiaccenter.org. He is a wonderful man. Send him the information
that you posted, and he will steer you in the right direction.
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Your situation is not unusual. First of all, ask for a copy of the
pathologists report of the biopsy. Second ask for a copy of the slide
photograph (done by the pathologist) and have it sent to Dr. Fasano at
Univ of Maryland . Many gastroenterologists will do an endoscopy and
based on the visual view make a negative determination and not take a
biopsy. Some take the biopsy and fail to send it to a "qualified celiac
pathologist" who knows how to prepare a slide if celiac is
suspected.Some GI's fail to ask the pathologist to look for celiac.
Lisa
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