New to the Group

Lesley · Post by **Lesley** » Tue Oct 18, 2011 12:13 am

Sarkin,
I had a horrible allergic reaction to the pepto capsules. Didn't know about using liquid as a treatment.

My symptoms "disappeared" but it was constipation, and when it I finally had a BM it was clearly D and not Norman. That hasn't happened yet. I seem to have an explosion and then back into C for a couple of days. I would give a lot for Norman.
I exercise daily in the pool, except when I am attacked by D. No fun for pool companions.

draperygoddess · Post by **draperygoddess** » Tue Oct 18, 2011 7:39 am

Lesley,

The C-D cycle is something several of us deal with, especially on medication. Immodium does the same thing to me.

Rhyes · Post by **Rhyes** » Wed Oct 19, 2011 6:33 am

Hello everyone,
I hope everyone is doing well. I'm still in remission and life has been great. I honestly haven't felt this good in years. I only have 5 days of Lialda left. I'm wondering if I should ask my Gastro for more before running out. I've been on it for about 8 weeks, and I'm worried that my symptoms will reappear once I stop taking it. I've only been D free for a little over a week, so it took about 6 weeks for the Lialda to start working (if that's what it is). I still can't believe that one dose of pepto would have done it. I think it was a coincidence. What does everyone think? Thanks again to everyone for the advice. I guess I shouldn't live my life worrying if this will come back. Every time a get a little gurgle, I think "oh no"! It's just hard to get over having horrible D for litterally 4 years straight and suddenly be back to normal.

draperygoddess · Post by **draperygoddess** » Wed Oct 19, 2011 7:07 am

Every time a get a little gurgle, I think "oh no"!

Oh, yes! I know that feeling!

Post by **tex** » Wed Oct 19, 2011 7:39 am

Rhyes,

If you're not planning to change your diet, and you don't want your symptoms to relapse, then getting that prescription renewed is your best option, at the moment. Without diet changes, or a medication, the question is not "if" your symptoms will relapse, but "when" will it happen.

Tex

Rhyes · Post by **Rhyes** » Sat Oct 22, 2011 9:04 am

Hi everyone, I hope everyone is doing well. Just an update. I got another month supply of Lialda from my Gastro so I feel good about that. I'm still in remission, going on three weeks now. I still haven't made any changes to my diet, however, I have been seriously considering it. Does anyone know if everyone with Lymphocytic Colitis is Gluten or Lactose intolerant? I've still been eating pretzels and breads and eating dairy products. Since I'm in remission with no symptoms, I haven't made any changes. I'm still drinking cofee as well. I am still so worried about my symptoms recurring and don't know whether I should make the changes or not. I'm willing to if I must, but I'm not sure if Gluten or Lactose have anything to do with my individual condition. Any advice? Has anyone heard of someone with this condition being able to eat these things? I sure don't want to do anything that may hasen it's return. Thank you all again for the help.
Rhyes

Rhyes · Post by **Rhyes** » Sat Oct 22, 2011 9:08 am

It's me again. Does anyone have any ideas for bread replacements? I love bread and pretzels and such. i'm guessing that corn tortillas would be the only substitute. Also, any ideas on cofee, peanut butter, peanuts and greens. These are all things that I eat as well. Do you think these things are alright?
Rhyes

Post by **tex** » Sat Oct 22, 2011 10:22 am

According to Dr. Fine's research, approximately 75% of people who have MC are gluten-sensitive. However, among the members of this board, over 95% of us are sensitive to gluten. The difference in numbers might be because those who have drug-induced MC aren't necessarily gluten-sensitive, and don't usually join this board, because all that most of them have to do, is to stop using the drug, and their symptoms will resolve. Probably about 85% of the members here are also sensitive to casein, (dairy), and about half of us are sensitive to soy.

However, note that Dr. Fine's research shows that only 57% of people who are sensitive to gluten, actually have symptoms - the rest are asymptomatic, (similar to asymptomatic celiacs - the damage continues to accrue to their intestines, but they don't show any clinical symptoms).

If you want proof that you're sensitive to gluten and/or dairy, or soy, etc., you can either order a stool test kit from Enterolab, or you can simply continue to eat those foods, and stop taking the Lialda after you've taken it for at least 8 weeks. According to most GI docs, you should be "cured" at that point. If you're able to remain in remission, without the drug, then obviously you don't have any food sensitivities. If, however, your symptoms relapse, then obviously something is causing the inflammation to reform, and that something is gluten, dairy, etc.

If you like bread, try Udi's gluten-free bread. There are some other pretty decent brands of GF bread available, also. I believe one is called Rudi's, and Anna Sobaski sells great GF bread mixes under the brand name of Gluten Evolution. If you use corn tortillas, be sure to read the label, because apparently, unlike here in Texas, up north, most brands contain wheat flour.

You can find rice tortillas that are GF at health food stores. Some of us can eat peanut butter, and others have problems with it. Most mainstream brands of peanut butter contain soy, which many of us react to. Most find almond butter, or one of the other nut butters, to be safer.

If you could drink coffee without immediately having to run to the bathroom, before you had MC, then it probably won't bother you now. What you put in it, though, might bother you. Most so-called "non-dairy" creamers still contain dairy ingredients, and most of us react to them. Coconut milk, almond milk, etc., are safer alternatives, if you can't drink it black. Salads, and all sources of fiber, are contraindicted for MC, until after our gut has had plenty of time to heal. They can usually be safely reintroduced into the diet, later.

Tex

Rhyes · Post by **Rhyes** » Sat Oct 22, 2011 12:35 pm

Thank you so much Tex. I will definitely take this information under serious advisement. I'm really learning a lot about this disease with your help.

MBombardier · Post by **MBombardier** » Sat Oct 22, 2011 4:52 pm

Welcome, Rita and Rhyes!

Rhyes, for whatever reason, Enterolab tests for me were all negative except the fat absorption one that showed that I had severe damage in my small intestine. I had been asymptomatic to gluten and everything else all my life until I was smacked upside the head last September with a diagnosis of collagenous colitis from what I thought was a routine you-are-over-50 colonoscopy.

So here is what you may think is a radical suggestion: Cut gluten from all sources out of your diet for three weeks, then eat some. I suspect you may discover, as I did, that you are intolerant of gluten after all. It's been that way with everything that I am intolerant of. Casein was the last holdout. I was sure that I had dodged the bullet on casein intolerance, then about six weeks ago I did the three-week test. Guess what...

draperygoddess · Post by **draperygoddess** » Sat Oct 22, 2011 7:34 pm

Also, sometimes you can eat things for years and not think you're reacting to them, but when you take them off the menu, you may discover some unexpected results. When I went GF/DF, I was amazed that I felt less tired, less anxious and irritable, even though it didn't immediately solve my GI issues. But when I ate some bread, I had a reaction the next morning. Actually, in some ways I felt WORSE for the first several weeks after I changed my diet, because once I eliminated those foods, I gradually got more sensitive to them, and if I accidentally ate something I shouldn't have, the reaction was worse. The good news is that I no longer have to take medicine to control my symptoms, and I don't have to go through every day wondering if I will have problems. I'm also not blown up like a balloon, and my clothes fit again. In the TOTALLY UNEXPECTED department, I was able to stop taking an antidepressant I've been on for several years without any anxiety or panic attacks (which has been my pattern every time I've tried to wean off it before). Too early to tell yet, but I believe that my new diet is helping my emotional/psychological health as well.

Only you can decide if you're ready and willing to make drastic changes to your diet, but I think most of us would tell you that no food is worth what MC does to us. My husband felt really sorry for me because I couldn't have bread or pizza anymore, but honestly, it was completely worth the improvement in how I feel!

sarkin · Post by **sarkin** » Sat Oct 22, 2011 9:58 pm

Cynthia,

I had the same experience - big relief, removing gluten/dairy, and heightened sensitivity when accidentally re-exposed. (YUCK!!!) My husband had a similar sympathetic reaction, but like you, I was not even slightly tempted, and I think he'd agree - even the best pizza in the neighborhood isn't worth an hour of MC symptoms (and we all know, they don't last just one hour).

(Sometimes we're socializing with people, and I feel as though "those" foods are in black and white, and I'm eating in color - recently, it was an apple cake, after a meal that had been orchestrated by a friend so I could eat *everything* - except this dessert... but the dessert was kind of like a ghost to me - hardly really noticed I wasn't eating it, and I could see that it was theoretically attractive, but... my mind had kind of "grayed it out" - weird!)

MBombardier · Post by **MBombardier** » Sat Oct 22, 2011 11:52 pm

Sara, that is so interesting. We have a shared meal (potluck) after church every week, and I bring my own food but usually cruise by the food table to see if there is anything I can eat. The things that I might be able to eat, like baked chicken, stand right out while the dish next to them, say tuna casserole, barely catches my attention.

On the other hand, I have nightmares about grabbing and eating something like a macadamia nut cookie without even thinking about it.

sarkin · Post by **sarkin** » Sun Oct 23, 2011 10:08 am

I have that fear, too, Marliss - not exactly a nightmare, but a nagging thought that I might mindlessly munch on something, in just that sort of social situation... and then sometimes I think - did I just eat that??

Love,
Sara

MBombardier · Post by **MBombardier** » Sun Oct 23, 2011 10:42 pm

Okay, we need a name for this latent phobia...how about triticophobia: fear of wheat?