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I received several more responses on this topic and have listed them below:

1.       Thank you for presenting the other side. My blood test and dna test
were positive and as I had "classic symptoms" which disappeared on the diet,
my internest found no reason for me to have the endoscopy as I also had
recently had a colonoscopy. My gastro however, rejects the diagnosis because
he did not do an endoscopy and poo poos the test results. Therefore, your
posting really made my day.

2.       Thanks for bringing up this subject. I am concerned about all the
people who are told they don't have CD based on biopsy and never learn that
they truly are gluten sensitive. They are relieved they don't have to go GF,
but their health remains bad. I think that is the biggest danger of the
biopsy. 

3.       Ron,

Wow, do I agree with this.  Besides the Pathologist not reading it correctly
the doctors also do not always read it correctly.

My biopsy 22 years ago was read by 4 different doctors.  I got 3 different
opinions.  One said low positive (stay on a low gluten diet).  Another said
it was a negative.  When I went to the third he yelled at me for not staying
on the diet 100% (I would have if I was told that).  I finally went to a
Conference on celiac.  Dr Murray spoke. I took my folder with me which had
all my celiac papers with me and had my biopsy results in it.  He told me
the test results read positive.

4.       This is a late response, but I'd like to tell you what happened to
me after 2 different endoscopies.

 

On one, I was already GF and had not had any diarrhea attacks for a year
(after going gluten-free and then also figuring out I was
lactose-intolerant).  I continued to have some other symptoms, so I agreed
to the biopsy which I really shouldn't have because I was definitely GF (the
biopsy was normal).  About a week after this procedure, I started having
diarrhea attacks again which have continued for years.  I think it might be
bacterial overgrowth, but I'm not sure.

 

The diarrhea attacks gradually got worse and I developed pain in my right
side, so several years later I had another biopsy.  This time I started
feeling much sicker, and in a different way, the day after the biopsy.  I
thought for a long time that they must have done something wrong during the
biopsy, but I finally started to feel better months later when I tried an
antihistamine, something that I don't usually take.  After that I took
antihistamines daily and it helped so  much that I went to an allergist and
now also take Singulair and allergy shots, which have made a huge
difference.  All I can figure out is that the stress of the endoscopy set
off my immune system and made my allergies worse.  BTW, I have had hay fever
since I was a kid, but actually thought it had improved!  Really, it had
just changed.  I was having a lot of postnasal drip and mucus that felt like
it was coming from my lungs.  Perhaps that upset my digestive tract, I don't
know.  (sorry to be so graphic).  Oh, and I got no benefit from this biopsy.
The villi were normal again, as they should have been since I was totally
GF. They did see some slight redness but dismissed it as no problem.  I
think there's a problem, though, as I still have pain in my side.

 

Anyway, when I saw your post, I couldn't believe the subject line.  I have
said these exact words to my allergist.

 

If these responses show nothing else, there are clearly no easy answers when
it comes to gluten-induced illness, except that a GF diet is often valuable
for regaining good health regardless of test results. 

 

Best Wishes, 

Ron

 


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