Microscopic colitis

Posted by bobthebuilder54 @bobthebuilder54, Oct 12, 2011

Hi, wondering if anybody here has this for a dx. I have been having a flare for about two months, it is getting a little better with the meds but the doctor wants me to go on a short dose of steriods. I already have a muscle disease so hate to go the steriod route, (plus do not need to gain weight) lol. But if anyone has any hints for me I would appreciate it on how to control this. It is the longest flare I have had.
Susie

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Don't know anything about microscopic colitis, but my 16 year Crohns colitis went away after I went on a gluten-free diet, which my gastroenterologists never even mentioned. Should be better each day so stay gluten-free for a month so see.

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@glutenfreecuredmycrohns

Don't know anything about microscopic colitis, but my 16 year Crohns colitis went away after I went on a gluten-free diet, which my gastroenterologists never even mentioned. Should be better each day so stay gluten-free for a month so see.

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Hi gluten-freecuredmycrohns,
thank you for the advice. I have been told this before, I think I may try this once and for all, just have to make sure I am home to be able to follow it correctly.
Thank you for your reply
bobthebuilder54

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Watch out for the steroids...read the prednisone discussion when you get time too.

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@nativefloridian

Watch out for the steroids...read the prednisone discussion when you get time too.

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I have so far not had to go that route, I also have UCTD with myopathy and pn and I really do not want to do the steriods, number one, I am trying to lose weight and number 2 I am still having tests and I know that they would interfere. Thank you for your replay I do appreciate any advise.
Bob the builder 54

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@glutenfreecuredmycrohns

Don't know anything about microscopic colitis, but my 16 year Crohns colitis went away after I went on a gluten-free diet, which my gastroenterologists never even mentioned. Should be better each day so stay gluten-free for a month so see.

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Hardest part is not being able to just grab a sandwich quickly when you're starving. I prefer Uti's bread, but they're all yucky. I was a pasta, bread, whole wheat junky, so this was really difficult for me--seems you never get full. Regular corn taco chips and corn tortillas are wheat free as is Kelloggs Rice Crispies. My homemade pizza is on a taco chip now!! It's a good thing I like tacos and can eat dairy. Stock up on meat, cheese, veggies and fruit you can eat quickly. Look for Bob's Red Mill Gluten Free Mighty Tasty Hot Cereal...be careful not to choose the plain organic style. Your digestive system needs the whole grain to move it thru properly. He also makes a decent Pancake Mix...all are expensive. You are correct to be sure you are ready to start a gluten-free diet and stick to it for a week or so, but you will be amazed at how it does a body good. Best of luck.

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@glutenfreecuredmycrohns

Don't know anything about microscopic colitis, but my 16 year Crohns colitis went away after I went on a gluten-free diet, which my gastroenterologists never even mentioned. Should be better each day so stay gluten-free for a month so see.

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Hi, my other problem is I am lactose intolerant. so the cheese part will not be good for me, but I am thinking maybe without the wheat I can eat the cheese, hum might be worth a try is my thought. I know I did read that even ketsup and corn flakes have wheat in them or frozen french fries that you really have to read the ings. I can see where this would take some planning.
Thank you again and have a wonderful day.
susie

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@glutenfreecuredmycrohns

Don't know anything about microscopic colitis, but my 16 year Crohns colitis went away after I went on a gluten-free diet, which my gastroenterologists never even mentioned. Should be better each day so stay gluten-free for a month so see.

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FYI, foods CANNOT be labeled gluten-free if they are manufactured on equipment where they also mfgr wheat products. Gov't is establishing guidelines now. Read labels, like regular Kellogg's Rice Crispies do not state gluten-free, but there is no wheat in them, as an ingredient. Minor amounts in ketchup, french fries, etc. I've had no problem eating. Rice Chex and Corn Chex are gluten-free too, as are Chinese Rice crackers. My limited knowledge of lactose intolerance is it can be two-fold. Either you lack the enzyme to digest the sugar in dairy or you cannot digest the fat in the dairy....or both. Easy test is to only drink 8 oz. of fat-free milk first thing in a.m. and wait 4-5 hours to see how you feel. If you get crampy, you lack the enzyme, so eat yogurt daily. If you don't get crampy, you can't digest the fat, so eat fat-free dairy. It's worth a try. Good luck to you.

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Hi Susie
google "microscopic colitis support" for a well established online support group related to MC. The url is http://www.perskyfarms.com. They encourage gluten-free diet and have lots of recipes and information regarding what is gluten-free and what is not. Casien, the protein in milk, is usually the #2 offender for people with MC (gluten being #1), followed by soy and then eggs. IMHO soy is more prevalent and hidden in our foods and therefore more difficult to eliminate from the diet than gluten.

Some people have good results controlling their flares using Pepto Bismol and/or Immodium. Some take Entocort. But I think, and this is just my opinion, that the drugs just mask and control the symptoms. Ultimately people who change their diet to get rid of their food sensitivities are able to get control without drugs. It can be done. But everyone has their own path to take. The first step is to control the D.

I went gluten free about 6 mos ago and it was a big adjustment, but you get used to it. And the results for me have been dramatic so I'm not tempted by bread anymore.

Best of luck. You can get your life back.

Gabby

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@gabriella

Hi Susie
google "microscopic colitis support" for a well established online support group related to MC. The url is http://www.perskyfarms.com. They encourage gluten-free diet and have lots of recipes and information regarding what is gluten-free and what is not. Casien, the protein in milk, is usually the #2 offender for people with MC (gluten being #1), followed by soy and then eggs. IMHO soy is more prevalent and hidden in our foods and therefore more difficult to eliminate from the diet than gluten.

Some people have good results controlling their flares using Pepto Bismol and/or Immodium. Some take Entocort. But I think, and this is just my opinion, that the drugs just mask and control the symptoms. Ultimately people who change their diet to get rid of their food sensitivities are able to get control without drugs. It can be done. But everyone has their own path to take. The first step is to control the D.

I went gluten free about 6 mos ago and it was a big adjustment, but you get used to it. And the results for me have been dramatic so I'm not tempted by bread anymore.

Best of luck. You can get your life back.

Gabby

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I've been struggling for over four years with collagenous colitis and still have not found resolve. I tried an elimination diet about a year ago for about 4 months and saw minimial improvement in symptoms and no improvement with the trips to the bathroom. I did not cheat and am very aware of all the hidden sources of gluten. This particular "diet" I eliminated all processed foods, and anthing with dairy, wheat, and yeast. How long did it take for you to notice that it helped? I am regretfully back on prednisone for the MC but have terrible eye burning and puffy feeling around my eyes along with dull stomach aches which I keep wondering if it's related to gluten sensitivity. I thought I would have noticed something within four months, now I'm begining to wonder if maybe I didn't stick with it long enough. I've been tested several times for celiac and it all comes back negative.

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Do you have lymphatic or collagenous colits? I was dx with collagenous colitis 4 years ago and have have tried pepto bismol, immodium, asacol, entocort, colestipol, and predisone. Prednisone is the only drug that controls it for me. I became frustrated with the doctors when they wanted me to stay on it and I didn't. I left the MC untreated for about two years while I tried alternative medicine with the use of supplements and diet modififcation. I lost 40 pounds but it didn't help. I became very sick this past February and spent the spring/summer trying to find a GI doc that would see me. Regretfully, I'm back on Prednisone and am tapering it down to get off of it again. I did start taking Cholestyramine a few weeks ago and it seems to have helped but I won't know how effective it actually is until I'm off the Prednisone. I'm not sure which drugs you've taken before but I'd try the others for long term management if you find one that works. Depending on how "short" the dose is of steriods it may be worth it for some relief. Although, I've found that doctors aren't always clear in their timeline. I was supposed to be on a short dose of Prednisone too and I started in July. To me that's not what I had in mind but I was so sick that didn't feel I had a choice. There's no easy answers and there are so few drugs on the list used to treat MC it would be worth trying each one to see if it's a fit for you. I wish you good health and am curious if you find one that helps.

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