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Lymphocytic/mycroscopic Colitis

Mary Contrary

By Mary Contrary
in Related Issues & Disorders

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Mary Contrary Rookie
Mary Contrary
Posted

After massive biopsies..{endoscopsy and colonoscopy] it has been determined this is what I have...and it rings true, I am like a text book case for this, but I have also been off of wheat for about 3 months, and two months prior to the tests....they said I am negative for celiac sprue..does anybody else have this autoimune disorder too ??? So I ate some cookies after they told me this..and nothing really happened, but I was a bit more gassy than usual a day or two later..I think I am staying off of wheat for the time being anyway..because I am finally getting almost back to normal.

does anybody else have this...Lymphocytic/Mycroscopic Colitis...it basically means you, sorry, crap yourself to death...constant non-bloody D.....but it does go away, mine is about stopped now for the last 3 weeks.

I have also read some other articles that say about a third of the people with this also have celiacs...

Open Original Shared Link

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Nancym Enthusiast
Nancym
Posted

Dr. Fine has done a lot of research on this: Open Original Shared Link

How should Microscopic Colitis be treated?

I have studied the use of Pepto Bismol (Procter and Gamble) for the last 6 years and have achieved good results and learned a lot about the syndrome from these studies. However, although Pepto Bismol will relieve diarrhea in 90% and resolve the colitis on biopsies in about 80%, 20-30% experience relapses after they stop the medicine, and 10% do not respond initially. It has now become clear from extensive further research over the last 3-4 years that these relapses, and in the less common instances when there is no intitial response, have been shown by my new sensitive stool testing to be caused by coexisting immunologic sensitivity to gluten in the diet, that is to a protein found in wheat, barley, rye, and oats. Although not the cause of the colitis, per se, the reaction to gluten by the immune system can perpetuate or reactivate the colonic inflammation. Because of this chance of relapse, and because Pepto Bismol is still a drug with at least the potential (albeit rare chance) for side effects or reactions to the dyes, etc., I recommend testing for gluten sensitivity and a gluten-free diet as the first line of treatment for microscopic colitis. This appraoch has brought more relief to the sufferers of colitis than any other form of treatment to date. It must be stressed that because the reaction to gluten by microscopic colitis patients is usually not fully developed celiac disease, blood tests for antibodies to gliadin and tissue transglutaminase (the diagnositc tests for gluten sensitivity) are routinely negative. This is why and how I discovered that these antibodies must be looked for at the anatomic site of their production: inside the intestine, which for a diagnostic test, is in the stool. These tests are now available from EnteroLab for this purpose. This is discussed further below.

I think some of us, the ones that aren't super sensitive to gluten, won't have a full scale reaction to it immediately. Probably continued chronic exposure is going to set us right back to where we started from though.

It is enough to me to know that gluten is opening up those tight junctions in the gut and letting stuff escape into the blood stream that shouldn't be there. I don't need my immune system to get any more confused than it already is!

Mary Contrary Rookie
Mary Contrary
Posted
  • Author

Oh thank you for that, well I firmly believe there is a direct connection..and also NOTHING brought me any relief except for adding Psyllium husk to my diet and getting off of wheat, and then it was over 2 months before things started to get better.

kara7 Rookie
kara7
Posted

I was diagonsied with Lymphocttic Colitis in Feb 05. My symptoms came back this summer but different and worse. Horrible blaoting and lots of other things. I was only seeing a colon/rectal surgeon who only wanted to put me on medication after medication. I am sick of being medicated and not finding an answer. I have an appointment next week with an allergists/immunologists since I have been getting hives for no explained reason. I also have a low B12. Do you have any of these other things along with your Lymphocytic Colitis.

Kara

Mary Contrary Rookie
Mary Contrary
Posted
  • Author
I was diagonsied with Lymphocttic Colitis in Feb 05. My symptoms came back this summer but different and worse. Horrible blaoting and lots of other things. I was only seeing a colon/rectal surgeon who only wanted to put me on medication after medication. I am sick of being medicated and not finding an answer. I have an appointment next week with an allergists/immunologists since I have been getting hives for no explained reason. I also have a low B12. Do you have any of these other things along with your Lymphocytic Colitis.

Kara

no, so far I'm doing quite well now, I am hypothyroid, which is another autoimune disorder....

Try some Psyllium husks, I swear that is what is helping me the most..I take two heaping teaspoons in water with every meal, it is kinda like drinking sawdust, but who cares, it helps...I was going constantly to the bathroom, up at night too, and it was hell trying to work or do anything for months...now I am back to just once or twice in the morning, although it is still rather urgent, but nothing like it was.

Good luck to you I sure know how miserable this is....

happygirl Collaborator
happygirl
Posted

Dr. Green discusses its association with Celiac in the book listed in my signature.

I was tested for it but do not have it. CanadianKaren on this board has it, also.

There is a great support forum at Open Original Shared Link that I would highly recommend.

Some people who have it are Celiacs, but some don't have "true" Celiac but still can't tolerate gluten. For them, it is often a combination of many food intolerances.

  • 3 months later...
Mary Contrary Rookie
Mary Contrary
Posted
  • Author

I just thought I'd stop by, I haven't had any symptoms of the Lymphocytic/mycroscopic colitis for almost 3 months now, and I am eating wheat again, I have been for 6 weeks now, without one ill effect. I consider myself extremely lucky. When all of my problems were full blown I felt it was in my best interest to try everything humanly possible to get over my condition.

I sure did appreciate all of the help and advice I received from you good folks on this Forum.

I just wanted to stop by and bid you adieu. :)

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corinne Apprentice
corinne
Posted

I, too, have collagenous (microscopic) colitis and I currently manage it with a gluten-free diet. I don't want to be a pessimist, but this type of colitis, like many others, usually follows an up-and-down course. It can disappear for weeks, months and sometimes years and then come back for a period of time. If it does come back, you may want to go back to gluten-free. Also check out the following board: Open Original Shared Link.

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