Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

Celiac, Microscopic Colitis, Lunch

4 posts in this topic

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.



Share this post

Link to post
Share on other sites

Ads by Google:


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.

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. :)


Share this post

Link to post
Share on other sites

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. ;)


Share this post

Link to post
Share on other sites

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.


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
    • Okay. I think I will start with an allergist and a dietitian. 
    • Yes, that list I posted includes stuff to look out for in your cosmetics as well, I think. Spices get contaminated often depending on brands, sources, and packaging plants, you have to find brands that are certified, I find Spicely Orangics works here. Supplement wise I am on a ton. I take combinations of Liquid Health Brand, Stress & Energy and Neurologic Support for B-Vitamins, I take Doctors Best Chelated Powdered Magnesium. I drink a bunch of almond milk and eat a lot of nuts, seeds, green leafy veggies, and a huge viarity of foods always having a mix to balance out my needs in vitamins (I studied alot an worked with a dietician to learn what contains what and find my balance). I found a IBS targeted probitotic from jarrow seems to work best with me and no bloat. List of other supplements if you want but with celiacs different people can get different deficiencies and you should probably talk to a dietician and see about having your own regiment built up. I just listed the common ones. I was thinking about this later on and after I got off the stuff for awhile I found myself randomly vomiting from some foods, none of the brain fog, numbness, Just throwing up. Ended up I developed intolerance to certain foods like egg yolks, soy, and a few others things. I also developed allergies to corn where I would just get sores in my mouth and digestive tact and run 99-102F Fevers when I ate anything contaminated with it. And a peanut allergy that caused me to distend and swell throwing up for hours and getting a rash later on. My different reactions to different foods made my dietician laugh at how odd my body is (we both did after talking for awhile) and my doctors found it interesting and kept on wanting to run more test.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member