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Celiac, Microscopic Colitis, Lunch

JRock

By JRock
in Coping with Celiac Disease

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JRock Apprentice
JRock
Posted

Hi there,

I've been diagnosed with Celiac for 2.5 years and I was diagnosed with microscopic colitis (collagenous) in January of this year. The doc had me on the gluten free diet (which I follow religiously) and started me on asacol, then added entocort when I was still having problems, then it was hurting to breathe and he noticed that in my endoscopy two years ago I had esophagitis and gastritis, so he gave me prevacid. I'm already on 20mg/daily of prozac for migraine prevention, ultram as needed for pain, vicodin as needed for when I get glutened, maxalt for migraines as needed, then ativan for when I can't sleep.

Asacol wasn't working, so he switched me to apriso, and now (after having a few weeks of peace followed by a week of pain, D, and daily extreme pain and D in the afternoon - especially if I exercise) he's added bentyl to the list. I'm beginning to wonder if these meds are doing more harm than good.

Does anyone else have experience with these meds or the afternoon pain/D? What has helped? I've tried liquid diet, rice only, rice/bananas/applesauce/chicken, etc. I am really feeling embarassed by all of this, especially with my live-in boyfriend. I almost don't want to tell him when I'm in pain, but he sees it. It used to be all bad days, now I'm grateful to have some good ones, but it seems like I get better for a while, then go back to bad again. Frustrating. Sometimes I want to remove it all: stomach, intestines, all of it.

Jen

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tictax707 Apprentice
tictax707
Posted

Hi!

I have lymphocytic colitis. I've been on asacol for a while, and it has been working well, but it did take me quite a while to settle out after I went on it (~6-9 mos or so?). How much asacol were you taking? So are you on asacol AND entocort? I am with you on the fact it seems like a lot of stuff. I just found out that asacol has lactose in it, supposed to be not from a dairy source, but I guess it still makes me nervous.

I also understand how frustrating it is socially, especially with the guy around. :unsure: I am just starting to get over a glutening myself, and I go through the same thing, where you get better, and then go back to feeling like crud. It IS really frustrating. And I have had the exact same feelings - take it all away - stomach, intestines, colon, everything.

When you do the liquid diet - how long do you eat those foods for? Does it seem like it helps at ALL? It sucks because once our colitis flares up and our colon is all inflamed sometimes it doesn't matter what we eat. :( I do stuff like cream of rice (really gerber rice cereal but I like it), and there is a gluten-free/DF meal replacement that I get from Canada designed especially for people with inflamed, damaged intestines.

Anyway, the last thing I wanted to tell you about it is that there is also a microscopic colitis forum that I just discovered. Have you heard of them? Pasted the link below but we'll see if it shows up. My screen name is the same there as here. I've found it really helpful as pretty much everyone on there is gluten free. I have found over the years that the colitis is really a different beast than the celiac sprue, and should be treated as such.

Open Original Shared Link

Please let us know if you have more questions!! I do hope you can get it sorted - just know that you have someone out here in your corner. :)

tictax707 Apprentice
tictax707
Posted

oh, AND I can also get funny symptoms in the afternoon - it's mainly gas as opposed to D, but just as socially awkward at work. :ph34r: I really think there is something to how your body processes things throughout the day that is variable. I wish I could say I had it worked out, but for the moment I just sort of chase the symptoms. I try to figure out what does and doesn't give me gas in the afternoons (or the least amount of gas) and go with it. Sometimes I find a have a bit more freedom of food choices in the evening - maybe because when the gas from those foods passes I am asleep. ;)

Nor-TX Enthusiast
Nor-TX
Posted

I have lots of digestive issues including Ulcerative Colitis, GERD, hernia, gastro paresis, IBS and of course gluten and dairy intolerances. I take 12 Asacol per day and every 5 weeks I have Remicade infusions. I have had numerous colonoscopies and endoscopy and capsule endoscopy. My GI did not encourage me to eat a gluten free or dairy free diet because she believes a low residue diet is all we need.

I stuck with it and now have a pretty good life. I can go shopping, out with my husband and I provide my own food when we have a school function. I don't eat anything I don't make, other than sashimi once every 6 months for special occasions.

I am going into a total knee replacement in 13 days and I must admit that the stress of that combined with 15 days of Avalox to battle a bad case of bronchitis has set me back a little, but I am now on a Z-pack and breathing has improved. They threatened to cancel the surgery if I didn't take steroids.

So, I send you lots of good wishes. Stick with it, take your Asacol and hopefully your medical condition will improve.

Good luck.

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