<<Disclaimer: Verify this information before applying it to your situation.>>
Thanks very much to everyone who sent me information! Apparently,
lymphocytic colitis (sometimes called microscopic colitis) may occur in
conjunction with CD. There is a an online support group for sufferers of
microscopic colitis; to get on it, send an email to [log in to unmask]
The recognized expert in microscopic colitis and its relation to celiac
disease is Dr. Kenneth Fine at Baylor. I read abstracts of two of Dr.
Fine's articles from Gastrenterology (http://www.gastrojournal.org/) -
"Efficacy of Open-Label Bismuth Subsalicylate for the Treatment of
Microscopic Colitis" (1998;114:29-36) and "The Prevalence and Causes of
Chronic Diarrhea in Patients with Celiac Sprue Treated with a Gluten-Free
Diet" - am definitely going to try to get copies of these articles for
further reading.
Chris Silker
Plymouth MN
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I was diagnosed with celiac 46 years ago and with colitis about 16 years
ago. I do not know what kind of colitis. I have often asked about any
relationship between the two. Initially I was told there was no
relationship. In recent years my doctor, a new doctor, has told me that
they think there might be a relationship. I usually can tell whether it is
colitis or the celiac acting up.
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I was diagnosed with microscopic colitis and NOT Sprue. I was put on
Suphasalazide, but am off it now. (because I chose to) I found the
gluten-free diet to be of the most help and I am on nutricuetical
supplements thus making my condition quite well. I am on a colitis
newsletter also. Dr. Fine out of Dallas is doing research on many of our
participants and giving us helpful information. He informed us recently
that microscopic colitis and Celiac Sprue are sometimes both seen in one
person. I don't know if this is any help to you. He developed a
pepto-bismul regimen some are taking with very good results. I didn't need
it, because I am doing just fine with what I am doing.
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I was diagnosed simultaneously with lymphocytic colitis and CS. A rigid
adherance to the diet made the colitis symptoms disappear. When diagnosed
the doctor told me he didn't know if the two were related but it seems
obvious that they were. I never took any medicine for the colitis. I
really feel great now and hope you do soon!
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I, too, was diagnosed with lymphocytic colitis, more than two years ago.
Like you, I was glad in a way to learn that my continued symptoms were
probably not gluten related. Unfortunately I am still trying to come up
with a way to deal with this disease. I am unsure if the colitis is related
to CD. I have read that this kind of colitis may be caused by a bacterial
infection, or possibly unrelenting use of antibiotics. I have to think that
somehow they are related but the docs seem to thiok not. My most recent
approach to healing my colon is to eliminate all refined sugars from my
diet and also to limit my carbohydrate intake of more difficult to digest
foods (ie: potatoes, rice, our safe flours, etc.). I am also watching my
caffeine intake (much less coffee, I allow myself one cup in am and one in
the afternoon)...On my last visit to my GI doc I was told that all of the
drugs that are used for colitis are usually ineffective and he would
recommend not trying any of them.
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Let me be first to say, you're not alone. I was diagnosed with lymphocytic
colitis and had findings in my endoscopy that are consistent with "treated
celiac disease". My doctor says I don' t have celiac in the true sense,
but that the gluten free diet will control the diarrhea. I did have many
celiac symptoms prior to diagnosis. I have lymphocytic colitis and
collagenous colitis. You should know that there is an informal newsletter
that an woman in CA compiles, in which others who have LC or CC share their
experiences. Her e-mail address is: [log in to unmask] The newsletter is
in e-mail format. I have done a medline search, and what I got from that is
that Celiac and LC/CC occur together only rarely, but it's not unheard of.
A study in the past year shows that many patients experienced relief by
taking pepto bismol 3-4x a day for 6 wks and most got relief from symptoms.
Other medications commonly used include Aasacol, Sulfasalizine. I hated
both of these. Questran never worked either. Pepto did provide some
relief, but I couldn't get off of it. Believe it or not, the combination
of a gluten-free diet and acupuncture works for me. I have to go almost
every week, but my bowel movements are formed as long as I keep it up. I
go (bowels) more often than most people, probably 3-5 times a day, but
compared to others, I have been doing fantastic. If you e-mail Judy, she
will gladly e-mail you the newsletters (Warning: It's a LOT of newsletter;
long e-mails). It will give you the opportunity to read about others'
experiences, some of whom also have celiac sprue. This informal newsletter
helped me find a doctor who diagnosed me correctly, which saved me from
spending most of my life in the bathroom!
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I would recommend you contact Dr. Kenneth Fine at the Baylor University
Medical Center in Dallas. His phone number is: (214) 820-9110. He is a
major researcher in the study of Microscopic Colitis. He prefers this
umbrella term for Lymphocytic Colitis, Collagenous Colitis, or Microscopic
Colitis. He has also done research on CS. I was dxed with LC last
December. I started flying to Dallas from California in February to see
him. He tested me for CS, and I came back positive for it, but I don't
have the symptoms. I have participated in 2 studies of his for MC. He is
still looking for 5 subjects dxed with LC. Please call him. Even if you
can't participate in the study, he will help you in any way that he can.
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I have celiac and lymphocytic colitis, too. According to Dr. Ken Fine at
Baylor, an expert at both, the two can be related. Unfortunately, the
colitis can be a real bear to control. I have been on steroids,
azulfadine, fiber, lomotil, blah, blah, blah.... Dr. Fine is doing a study
with pepti bismol which has helped a lot of people. I would strongly
suggest you never take nonsteroidal anti-inflammatories (motrin, aspirin,
etc.). There is an on-line colitis group dealing with microscopic (both
lymphocytic and collagenous) colitis.
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I too suffer from Lymphocytic Colitis and have been biopsied-diagnosed with
Celiac Sprue and wondered if I was off on my gluten-free diet. But my
continuing diarrhea, according to my GI, is from my Lymphocytic Colitis.
Currently, he has prescribed Asacol but I am unable to tolerate it. My
bathroom trips while taking the medication (8 pills/day) increased to 1
every 2 hours at night. Not acceptable. So, I am currently not taking
anything - just putting up with the continuing trips to the bathroom - for
no rhyme or reason.
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I have the same type of colitis. I was diagnosed by my gastroenterologist
at the same time I was diagnosed with celiac disease. I take Asacol (400
mg) - 2 of them 3 times a day and it keeps me just about completely under
control. He is a great doctor (speaks and teaches all over the world). He
tells me I can stay on Asacol indefinitely with no side effects.
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