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Microscopic Colitis?

no-more-muffins

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no-more-muffins Apprentice
no-more-muffins
Posted

I have the classic symptoms of celiac: frequent soft stool, nausea, headaches, joint pain, depression, anxiety, bowel cramps, bloating, fatiuge, weight loss, decreased appetite.

I had the blood tests and they came back neg. The endoscopy yielded a negative biopsy as well. My dr. happened to order a flex sigmoidoscopy and the biopsy from that revealed microsocpic colitis.

I have read some stuff that suggests that MC and celiac disease are both related to the same gene, and that many people with celiac disease have MC.

I just find it strange that my diagnosis is MC because I fit more into the celiac disease mold. (MC is more common among older women 60-70 and is charactherized by chronic watery diarrhea.) I am in my early thirties and I dont' have chronic watery diarrhea. My poo is soft and I have 2-3 bms a day but it isn't D.

I have started eating gluten free because I don't know what else to do at this point. Most sites that talk about MC just talk about easing the diarrhea with pepto. I am much more concerned about my other symptoms. I have read some stuff that MC often improves with a gluten-free diet but I am wondering why info that says that is so scant. The Mayo Clinic and many clinic websites don't even mention the possibility of NCGS or any sort of gluten-free diet trial.

Does anyone here have any experience with this? I kind of consider myself as having celiac (or at the very least NCGS). Is NCGS common with MC?

Thanks for the help. I am new to this and feel like the medical community is failing me. They know even less about MC than they do about celiac.

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cheddalyn Newbie
cheddalyn
Posted
I have the classic symptoms of celiac: frequent soft stool, nausea, headaches, joint pain, depression, anxiety, bowel cramps, bloating, fatiuge, weight loss, decreased appetite.

I had the blood tests and they came back neg. The endoscopy yielded a negative biopsy as well. My dr. happened to order a flex sigmoidoscopy and the biopsy from that revealed microsocpic colitis.

I have read some stuff that suggests that MC and celiac disease are both related to the same gene, and that many people with celiac disease have MC.

I just find it strange that my diagnosis is MC because I fit more into the celiac disease mold. (MC is more common among older women 60-70 and is charactherized by chronic watery diarrhea.) I am in my early thirties and I dont' have chronic watery diarrhea. My poo is soft and I have 2-3 bms a day but it isn't D.

I have started eating gluten free because I don't know what else to do at this point. Most sites that talk about MC just talk about easing the diarrhea with pepto. I am much more concerned about my other symptoms. I have read some stuff that MC often improves with a gluten-free diet but I am wondering why info that says that is so scant. The Mayo Clinic and many clinic websites don't even mention the possibility of NCGS or any sort of gluten-free diet trial.

Does anyone here have any experience with this? I kind of consider myself as having celiac (or at the very least NCGS). Is NCGS common with MC?

Thanks for the help. I am new to this and feel like the medical community is failing me. They know even less about MC than they do about celiac.

cheddalyn Newbie
cheddalyn
Posted

Microscopic colitis won't get better on a gluten free diet. I have celiac and MC and it did not. Improve on a gluten-free diet. What did help was eating healthy and avoiding processed foods.

laurak Newbie
laurak
Posted

Hi, I am brand new to the forum but found this discussion when I googled "microscopic colitis and celiac disease."

I was diagnosed with microscopic colitis after a colonoscopy in September of last year. I just had a celiac panel of bloodwork done at the doctor and I just heard back - I am negative for celiac.

I went gluten-free for 2 weeks about 2 months ago and all of my symptoms went away. The symptoms include: daily painful lower abdominal cramps, bloating, fatigue, both constipation and diarrhea, trouble losing weight, and headaches.

So, like you, I also think I have celiac disease. I am going to continue to eat gluten-free (have been gluten-free since last week's blood test) because it's just not worth feeling bad every day. Unfortunately, medicine in the US isn't very helpful when it comes to microscopic colitis or gluten.

dilettantesteph Collaborator
dilettantesteph
Posted

I just got a biopsy for that when I had my colonoscopy. I was wondering the same thing. My doctors and I think I have celiac disease due to response to diet. That was the reason for the biopsy because MC is often associated with celiac, they told me. I am symptom free as long as I avoid gluten, so I'm not sure why they would bother with the biopsy. I get my results in 4 weeks.

no-more-muffins Apprentice
no-more-muffins
Posted
  • Author
I just got a biopsy for that when I had my colonoscopy. I was wondering the same thing. My doctors and I think I have celiac disease due to response to diet. That was the reason for the biopsy because MC is often associated with celiac, they told me. I am symptom free as long as I avoid gluten, so I'm not sure why they would bother with the biopsy. I get my results in 4 weeks.

First of all, I can't believe they are actually making you go through the biopsy when they know you are gluten intolerant and secondly, I can't believe it takes 4 weeks for the result.

As far as my situation goes, i am rather confused about what is really wrong with me. I got my results from the medical records people at the hospital and it said I had "minimally active colitis". My Dr. sent me a letter saying that everything was "essentially normal". Someone on a microscopic colitis support board reviewed what the pathology report and he did not think I have microscopic colitis. My Dr. basically left me high and dry without any advice whatsoever besides, "call if your symptoms worsen". My GI doc didn't help me at all. The only good that came of it was hearing about MC, googling it and finding the MC support board. Even though I don't have it, those people over there know a lot and they have been able to help me a lot.

I am going to have testing done through entecort because I refuse to believe that I don't have a problem with gluten. "celiac" or no "celiac" (villous atrophy), I know there is something wrong with me.

I am having testing for soy, gluten, milk, egg and yeast. I have been gluten free for 2 weeks.

no-more-muffins Apprentice
no-more-muffins
Posted
  • Author

Here's the link to the microscopic support board. They are great over there.

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dilettantesteph Collaborator
dilettantesteph
Posted

I'm not sure why they did the biopsy either especially because I ASKED THEM NOT TO, AND THEY AGREED THAT WOULD BE BEST. It looked like you just treat symptoms, and since I am symptom free, why bother giving my health insurance a reason to deny coverage? I guess they get knife crazy. It's a teaching hospital, maybe the fellow doing the colonoscopy hadn't done a biopsy yet. I agree that it wouldn't take four weeks to get the result. They are just backed up with appointments. They should have saved themselves and appointment and not bothered with the biopsy!

bendrixx Newbie
bendrixx
Posted
I have the classic symptoms of celiac: frequent soft stool, nausea, headaches, joint pain, depression, anxiety, bowel cramps, bloating, fatiuge, weight loss, decreased appetite.

I had the blood tests and they came back neg. The endoscopy yielded a negative biopsy as well. My dr. happened to order a flex sigmoidoscopy and the biopsy from that revealed microsocpic colitis.

I have read some stuff that suggests that MC and celiac disease are both related to the same gene, and that many people with celiac disease have MC.

I just find it strange that my diagnosis is MC because I fit more into the celiac disease mold. (MC is more common among older women 60-70 and is charactherized by chronic watery diarrhea.) I am in my early thirties and I dont' have chronic watery diarrhea. My poo is soft and I have 2-3 bms a day but it isn't D.

I have started eating gluten free because I don't know what else to do at this point. Most sites that talk about MC just talk about easing the diarrhea with pepto. I am much more concerned about my other symptoms. I have read some stuff that MC often improves with a gluten-free diet but I am wondering why info that says that is so scant. The Mayo Clinic and many clinic websites don't even mention the possibility of NCGS or any sort of gluten-free diet trial.

Does anyone here have any experience with this? I kind of consider myself as having celiac (or at the very least NCGS). Is NCGS common with MC?

Thanks for the help. I am new to this and feel like the medical community is failing me. They know even less about MC than they do about celiac.

Wow! I got the SAME test results 4 years ago...and they STILL do not know what's wrong with me. I'm curious...I got my vitamin D level checked 2 years later in 2007...it was an 8! I wonder if you've got a low D level as well? I lost over 100 lbs, and I had a constant burning in my left side and what felt like my stomach (I've since gained about 60 back). I had gone in for the same test and badda-bing...all they found was lymphocytic (or microscopic colitis). I STILL have the left flank pain combined with your description of occasional diarrhea, fatigue, bloating, etc...except now I get low grade fevers and sweating that can go on for weeks at times as well. Since they couldn't find any infection, etc...it was assumed I had a pancreatic condition or gallbaldder problem...I even had ever so slightly elevated amylase and lipase..but after 2 CT scans and an upper endoscopic ultrasound, it was discovered I had NO pancreatitis whatsover. My gallbladder, pancreas, Spleen, Liver and kidneys have all come back normal. I've even had 3 contrast scans and nothing. I've tried gluten free and dairy free for a few weeks at a time...with no luck, the left flank pain and bloating never seems to go away. I have read MC is a condition that arises AFTER an infection. Meaning, you and I may be suffering from some un detectable chronic infection. I dunno...I'm trying gluten free AGAIN for a third time...but will try sticking with it for 3-5 months instead of 1-2 weeks and see if I do not recognize improvement. Let me know if you've had any symptoms like what I'm describing in tems of left flank pain...I'm just fascinated that you got the same test results I did, when they went in to look for the exact symptoms I had and still have to this day. FYI...but the ONLY thing that fixed the absorbtion problem, weakness, heart palpitations, etc, was taking 5,000 mg daily vitamin D at breakfast...it has helped wonders (vitamin D is the base vitamin your body needs to absorb MOST all the other vitamins). Taking the D at 500 mg daily cleared up most of my symptoms, other than the left side pain, ocassional fever and sweating. Whatever is going on in my system, is not allowing my body to absorb vitamin D effectively...the D supplement, even on a wheat based diet, have worked wonders...but, naturally, I want to figure out how to absorb what I'm supposed to normally, without suplementation...that, and the elimination of the 4 year continuous, constant, gnawing, burning left flank pain that only goes away when I don't eat, would be nice for a change! :rolleyes:

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