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Microscopic Colitis

Jemimabella

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Jemimabella Newbie
Jemimabella
Posted

Hi,

I have only just joined this forum, I am from the UK and was diagnosed with Coeliac Disease nearly seven years ago. I was wondering if anyone who had experience of Microscopic Colitis could offer me any advice, like what were your symptoms and how you were treated for it. I have not been diagnosed with this although I have been suffering on and off with diarrhoea and low abdo pain despite following gluten-free diet very carefully. At the moment I am experimenting by stopping taking one of my medications for excess stomach acid to see if that makes a difference. If it doesn't and my symptoms continue as they are then my plan would be to have a colonoscopy.

I would really appreciate hearing if anyone else has any experience of this.

Thank you

:rolleyes:

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pedro Explorer
pedro
Posted

Hi and welcome to this forum.

I don't any experience with microscopic colitis, but I am sure others will responde to you with their experiences and recemmendations. For now welcome I am glad you are here.

Best regards to you, and I hope and pray you get better, and healthier.

corinne Apprentice
corinne
Posted

I have microscopic colitis (collagenous). The D from microscopic colitis is very watery (sometimes completely clear for me) and very high volume. I also get cramps, gas, nausea and vomiting. Obviously, this can only be diagnosed with a colonoscopy. If you do this, make sure you have a competent doctor who takes plenty of samples. This can only be diagnosed in the lab under the microscope.

The first line of treatment my doctor tried was 2 peptobismol 4 times a day. That worked for one year, then the D came back. Next, I eliminated gluten (my mother is celiac) and that lessened symptoms, but I still had frequent D. I now eat a very restricted diet - no grains (including rice+corn), no dairy, no beans including soy, no eggs, no red meat, no nuts, no sugar, no starches including potatoes etc and I'm mostly symptom free. Obviously, this is not an easy diet to follow, but for now, it's working. Occasionally, I still have flare-ups, but these are treated with immodium and if that doesn't help, then lomotil. I haven't tried asacol or entocort yet. PM me if you have more questions. There are also two online boards for microscopic colitis.

Amber100 Newbie
Amber100
Posted
Hi and welcome to this forum.

I don't any experience with microscopic colitis, but I am sure others will responde to you with their experiences and recemmendations. For now welcome I am glad you are here.

Best regards to you, and I hope and pray you get better, and healthier.

Hello, I was noticing on your stats that you went back to eating gluten for a year before becoming permantent? Was that so the tests would be more accurate? Is there a test they can do even if you are not eating gluten? I have been off of gluten for almost 2 years and my docs are making me go nack to it to retest me because the first docs test wasnt accurate anough?? And I would like to know if anyone knows of a less awful way of doing this? Also, are ther other food that cause celiac-type symptoms, like, somach pangs, burning, nausea or fullness, flu/achey symptoms?? I feel like I cant find any real answers! Help!

Thank you!

Amber P

Anicw03@yahoo.com

  • 3 months later...
wendybird Newbie
wendybird
Posted

1st posting ever on any "board"!

I am 47 years old and was Dx'd w/ Celiac 7 years ago, did well on gluten-free diet. This past January I started re-introducing gluten into my diet in the vain hope I was "cured". In early May the S__T hit the proverbeal fan, almost literally! I exploded with D, cramps, bloating, and flatulence that usually also involved stool incontinence, and lost 25 pounds in 2 weeks... I immediately resumed gluten-free diet when these symptoms occured, but to no avail. In fact things were far worse than before my initial diagnosis. One Sunday I used the toilet more than 40 times. At that point I went back to my Gastro Ent and admitted my folly. I told him I was ready to check into a hospital and have an IV hooked up or die from not eating- it wasn't worth it. He put me on a further diet restriction eliminating dairy, raw vegies, caffine, carbonation and concentrated fruit juice and prescribed prednisone which I was to begin once a stool test came back negative for C diff and parasites (2 weeks later). After a month on Prednisone without improvement, he moved up the date for a Colonoscopy, which turned up microscopic Colitis. I have been taking Asacol for 2 weeks now. He said it would likely take 6-8 weeks to clear up. My stools, if you can call them that, have consistently been pure liquid with sand-sized sediment and individual very small particles of undigested food. I can't advise you on the outcome of treatment, but will keep you posted (no pun intended).

  • 3 years later...
cyberprof Enthusiast
cyberprof
Posted

Bumping this up for comments.

Any other members diagnoed with this?

I had my colonscopy last week and am expecting the results soon.

willabec Contributor
willabec
Posted

Bumping this up for comments.

Any other members diagnoed with this?

I had my colonscopy last week and am expecting the results soon.

i had mine as well and waiting for the results but on the paper that they sent me home with....that things looked normal, it also said colitis not present...how can they put that on the paper if it can only be determined by looking under a microscope?

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cyberprof Enthusiast
cyberprof
Posted

i had mine as well and waiting for the results but on the paper that they sent me home with....that things looked normal, it also said colitis not present...how can they put that on the paper if it can only be determined by looking under a microscope?

The paper that they send you home with after the procedure only says what they "saw" but the biopsy takes time, about a week usually. From what I understand they can "see" ulcerative colitis but microscopic can only be seen under a microscope, as the name says, not via the "scope" used for the colonscopy.

I got my results yesterday and I don't have microscopic colitis...which is a relief.

A4GVNGIRL Newbie
A4GVNGIRL
Posted

I am fairly new to Celiac (only 3 months ago was diagnosed). I am doing some research as my GI doctor has me scheduled for a Colonoscopy the day before Thanksgiving (next week). My symptoms have changed/worsened since going gluten free on the diet. Added to the "usual" Celiac symptoms, adding extremely elevated liver enzymes, liver (palpated) is enlarged-which is extremely painful, very loose stools and abdominal cramping that varies from "discomfort" to "stabbing and unbearable" feels as if a sword is passing through my intestines. It almost feels like gas pains, but with less severe bloating.

I am being tested for AutoImmune Hepatitis and having the Colonoscopy for Microscopic Colitis.

Does anyone have any tips on reducing the abdominal pain until next week? Each day it grows worse, to the point that I am scared to eat. Of course, my GI doctor doesn't return my calls, so I am trying to find ways to cope with it until he does..

willabec Contributor
willabec
Posted

I am fairly new to Celiac (only 3 months ago was diagnosed). I am doing some research as my GI doctor has me scheduled for a Colonoscopy the day before Thanksgiving (next week). My symptoms have changed/worsened since going gluten free on the diet. Added to the "usual" Celiac symptoms, adding extremely elevated liver enzymes, liver (palpated) is enlarged-which is extremely painful, very loose stools and abdominal cramping that varies from "discomfort" to "stabbing and unbearable" feels as if a sword is passing through my intestines. It almost feels like gas pains, but with less severe bloating.

I am being tested for AutoImmune Hepatitis and having the Colonoscopy for Microscopic Colitis.

Does anyone have any tips on reducing the abdominal pain until next week? Each day it grows worse, to the point that I am scared to eat. Of course, my GI doctor doesn't return my calls, so I am trying to find ways to cope with it until he does..

i just got my results back from my colonoscopy a few weeks ago...i do have microscopic colitis and the biopsy of my duodenum looks "celiac" - i have been gluten-free for 9 years...so either the microscopic colitis is causing the "celiac" look to my intestines or something is going on....i am kind of nervous....dr. prescribed prednisone for 15 days....the first 2 days were great....no d. i actually have not had d since, but the first 2 days were better...not sure why- coincidence? he said i might not see results for 10 days but when the first two were good - it makes me upset! anyone out there that has taken prednisone for inflamation and how long did it take to "work"

willabec Contributor
willabec
Posted

i just got my results back from my colonoscopy a few weeks ago...i do have microscopic colitis and the biopsy of my duodenum looks "celiac" - i have been gluten-free for 9 years...so either the microscopic colitis is causing the "celiac" look to my intestines or something is going on....i am kind of nervous....dr. prescribed prednisone for 15 days....the first 2 days were great....no d. i actually have not had d since, but the first 2 days were better...not sure why- coincidence? he said i might not see results for 10 days but when the first two were good - it makes me upset! anyone out there that has taken prednisone for inflamation and how long did it take to "work"

ok...for those of you out there that have celiac disease and microscopic colitis....do any of you have a gurgling/fizzy feeling in the upper left side of your abdomen, like under your breast/rib cage? i get it once in a while and it drives me crazy! want to know what it is. dr. has me on prednisone, but i don't know if it's working, well, it is, the frequency of going to the bathroom has certainly lessened, but i wanted and expected normal bm's! not yet anyway and it's been 7 days! it's this gurgling thing that has me upset too! any suggestions?

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