We're you ever diagnosed with colitis?

Debbiedebbiey
Debbiedebbiey Posts: 824 Member
edited December 2024 in Social Groups
My mom has had colitis for a while, but keeps on having terrible flares. She eats mostly carbs, refined. Little vegs or fruits. It's a low residue diet. Crackers, bread, potatoes,white rice, pasta. I've been reading a lot about trying gluten free (one of her drs told her to go GF) but she feels it's too much trouble. The dr said usually thyroid ( which she's had for 50+yrs) and colitis together almost always equal gluten sensitivity. Has anyone had similar problems? She has more than 10+diarrhea episodes/day, vomiting, sinus, rosacea, brain fog, hand tremors, inflammation in joints (including feet) sleep apnea and problems breathing, UTIs that won't go away-even with antibiotics. I don't know what to do with her, she has sooo many diff drs....she thinks she's lactose intolerant, can't eat nuts or seeds due to colitis. All I've read on here leads back to gluten. Anyone have anything similar or ideas to help? Sorry sp long, thanks for any help !!!

Replies

  • monicalosesweight
    monicalosesweight Posts: 1,173 Member
    No. I've never been diagnosed but I do have a severe wheat allergy which is why I'm trying to stay gluten free.

    Monica
  • Doberdawn
    Doberdawn Posts: 733 Member
    I can't speak to diagnosis, my docs were still working on it. I had chronic loose stool and frequent diarrhea for the past year (or two?). I went through all kinds of testing... not bacterial, not pest, not..... I finally tried going gluten-free and eating a high fiber diet... and I seem to be doing well on it. The problems are nearly all gone except for an occasional bout. I am also dairy-free. It is not that hard if the problems are worth the change... she'll come around or decide to suffer. You can't force her to change though.
  • pdworkman
    pdworkman Posts: 1,342 Member
    I do know of others who have been diagnosed with colitis who have eliminated symptoms by going gluten free and dairy free. Dairy is apparently a big trigger - don't just go lactose free, but actually dairy free.
  • Wenchilada
    Wenchilada Posts: 472 Member
    Yep - in 2009, a couple months after my 29th birthday. After a couple months of nonstop, unexplained diarrhea, several tests, CT scans, and a colonoscopy, my GI doctor prescribed Lialda. He said it was a very mild drug with few side effects, and said it might take 2-3 weeks to kick in, so to be patient, and call back in 3 weeks if my symptoms weren't going away.

    3 weeks passed with no relief. In fact, my husband took me to the ER at 5AM that week, with what I thought was really severe bronchitis, all-over pain, a crushing feeling in my chest, and a high fever (103-104). The ER docs weren't going to keep me after they gave me some morphine and my infectious disease tests all came back negative, but I was really, really frightened at the prospect, and I asked if they would at least keep me for a few more hours. So, I was admitted. This was on a Wednesday. I was also seriously anemic, and by Friday, I had received two blood transfusions. The oxygen cannula they provided me with on Thursday turned into a full mask with a bag on it by Saturday afternoon, and full artificial ventilation in ICU by Sunday. The cardiologist drained a cup of fluid off of my pericardium, which they tested for infections, but came up negative. They had no clue what was wrong with me.

    A couple of the doctors on my case suspected it might be the Lialda that had made me so ill, because rare side effects that matched mine had been reported, but not widely enough to cause a whole lot of alarm among the medical community. One doctor finally went above the others' heads and gave me a heavy course of steroids, which stopped and reversed the reaction (just in time - my lungs were nearly swollen shut and the ventilator was as high as it could go), and also put my "colitis" into "remission". 3 weeks later, I was released from the hospital's skilled care unit, and had to learn how to walk and perform regular daily activities again. I was still using a walker on my first day (well, month) back to work, and I was so embarrassed.

    I didn't consider gluten a possibility at that point, and I didn't really have any GI symptoms even though I was eating normally (after I was able to eat again). In retrospect, I believe it was the steroids and eventually the azathioprine (Imuran) keeping my inflammation down in the presence of the gluten.

    I had a fit one day, a few weeks after my 30th birthday, partly due to PTSD and partly due to weaning off of steroids, and decided I wasn't going to take my azathioprine anymore. I had read that it sometimes causes leukemia & lymphoma with prolonged use, aside from the main issue of weakening your immune system, and you should not under any circumstances be off of birth control while taking it. We were thinking of having children at the time, and I didn't want to be on something that would put my child at risk if I were to take it, but leave me ill and miserable if I didn't take it. So, after I stopped taking it, I was afraid of having a relapse. I then remembered what a friend had told me about her own situation, that she never knew she was Celiac until she went to the doctor for aches & pains (her GI symptoms were mild if at all) and had a blood test. I talked to her about her experience, tried eliminating gluten as best I could, then went and confessed to my new GI doctor that I'd quit taking my meds because I thought I might be able to manage it just by avoiding gluten. He was concerned, but ultimately told me he'd trust me to try it out, and to let him know if I was flaring again so he could get me back on medication.

    My GI's office calls every 6 months to ask how I'm doing, and asks if I need to consider going back on medication. Every time, I cheerfully tell them, "nope!" and explain that as long as I continue to avoid gluten and cross-contamination, I'm happy and healthy. The only times I've felt like I was close to having a "flare" have been when I went on what I like to call gluten benders. Not just one incidence of "cheating," but days or weeks at a time of eating whatever I felt like just because I was tired of being careful. And I always, always felt like absolute crap, and not even necessarily out of a guilt reaction - I demonstrably looked and felt like hell, and it was a self-perpetuating cycle. Since resolving to knock it the #%!$ off and starting on MFP in May, I haven't had a bender, and I don't even have a desire to. I consume a fair amount of fiber and "residue" every day - as much as I can muster - and I have never had a problem when I haven't also been eating gluten. (Fiber is often a big problem for UC, and when I first got out of ICU, they started me on a low-residue diet because of that - and they were shocked that I was tolerating everything so quickly and wanted to be on regular foods.)

    It seems as though ignorance, not curiosity, damn near killed this cat 3 years ago. Obviously, YMMV, and my reaction to the meds was very rare - but I really wish I'd considered eliminating gluten before I went the pharmaceutical route. I lost 2 months of my life to that ordeal, and much more in the aftershocks.

    Looking back, I used to more or less subsist on saltines when I had an upset stomach, as they were all that sounded appealing and were supposed to be the most bland, neutral food ever. Oh, the irony.
  • dovek11
    dovek11 Posts: 94 Member
    Yes, in my life I was misdiagnosed with IBS and colitis. I say misdiagnosed because, though yes, I had them, they were just a symptom of my gluten poisoning, what turned out to be Celiac. I look at it as my body was warning me to do something. It wasn't until the body could take no more and in January this year, with severe "D" for weeks...( and still nibbling crackers.....!!!!!! Which kept it going!)
    I finally went to the doctor, who ran tests, eliminating many things and then said he had no idea but would like to try to treat me for Crohns. That was his best guess. I refused the medications, came home and read the web with my symptoms and found my answers.
    My system immediately responded to a gluten free diet!!!
    I am thankful every day for the Internet! If not for it, I would still be eating gluten, topped with a handful of medications, and still be very sick. I have a new life now!

    Good luck in trying to help your mom. The older we get, the harder it can be to accept that everything we have been told could be so wrong! You might try getting her gluten free by explaining that clearly, what she is doing is NOT working! Why not try the opposite for awhile and see what happens. What could it hurt? I am certain many of her symptoms will clear up nearly instantly.

    But I will warn you, for at least three days, she may need some extra support. Though I didn't eat much gluten in my life, and hadn't eaten any but those saltines for weeks, I had severe withdraw. Had I not read it could happen, I would have thought I finally went off the deep end. I craved ANYTHING gluten heavily! I fantasized about foods that I never even liked eating! It was the wildest thing! After three days it was gone.
    I can see how if someone went back to it, like Wenchilada, it would cause an addictive spiral like she described! Almost an out of control thing, like an illegal drug!

    And may I say, treat her with compassion too. I can tell you, that brain fog.... I didn't realize how silly my brain was until I quit gluten. I apologized to my entire family for how I was before. I can't imagine how they lived with me. It wasn't just a fog, but I can say now I didn't have a rational mind, and didn't even realize it until it went away!

    Good luck!!!!!!!!!!!!!
  • Wenchilada
    Wenchilada Posts: 472 Member
    YES, the brain fog - and the complete irrationality sometimes as well! I also experience aches & pains that feel like they go into my bones, and what more or less amounts to a head cold or hay fever, and this will all last for 4-5 days after I eat something with gluten in it. It takes a while to work out of your system. You can't just eliminate it for half a day and expect to miraculously feel better. I suppose it's possible, but doesn't seem likely.

    I forgot to mention, I was initially diagnosed with IBS when I was 21. That was when I was subsisting on saltines & milk, and it was also during a particularly stressful period of my life. I had really bad GERD as well, and I was probably making it worse as well. My family doctor wanted me to get a colonoscopy at that point, but I was in college, 4 hours away from home, and the prospect of having such a thing done while I was home for winter break was not appealing. So I tried a drug called Levbid, which was supposed to reduce intestinal spasms among other things. Well, it didn't help all that much, and I think it made me slightly crazy/crazier as well - I got really upset at my roommate one night for turning off the fan in our dorm room when she went to bed, and instead of asking if I could turn it back on (it was really stuffy in there), I silently packed a bag and stormed out at 2AM, then drove 20 miles on a county road to my fiance's grandparents' house. I was never able to recall more than 2 minutes of that drive. I couldn't figure out how to open the door to the house when I got there, so I went around the house and started banging on his bedroom window until he woke up and let me in (it was unlocked, BTW), and then sobbed hysterically for 30 minutes. I quit taking the medicine after that. In retrospect, it was probably a combination of the meds and the all-white-flour-all-the-time diet I'd put myself on!
  • Funsoaps
    Funsoaps Posts: 514 Member
    Yes, I went gluten and dairy-free for myself (although my Natpath would like me to be able to eat normally again). The best thing I did was get on some good digestive enzymes, very strong probiotics (I'm talking 30-60 billion bacteria per capsule) a day or more. I take a lot of supplements (due to the fact of the malabsorption). De-stressing helps and working out. I also had to cut out coffee.
    Also investing in anti-diarrheal medicine can sometimes be your friend, my gastro said I could take as many as I want. But with my diet and what I do, I barely need them anymore.
  • jus_in_bello
    jus_in_bello Posts: 326 Member
    I've had those symptoms and it was a gluten intolerance issue. Going GF can't be any more trouble than daily life is for her at the moment. Now is a really easy time to be GF, crackers, breads, sweet, pasta, is all being made GF. It's not that difficult to just buy her GF alternatives and get rid of what she's already got in the house.
  • Debbiedebbiey
    Debbiedebbiey Posts: 824 Member
    Thanks to everyone that's shared their stories ! I can only hope she'll try giving up gluten, but as of yesterday she was still enjoying her ritz crackers........
This discussion has been closed.