Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac, Microscopic Colitis, Lunch

JRock

By JRock
in Coping with Celiac Disease

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,667
    • Most Online (within 30 mins)
      7,748
    AubreyMBSMartin
    Newest Member
    AubreyMBSMartin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.