Hello!
I was diagnosed with LC last week. The diarrhea started one day 3 weeks after taking antibiotics in May. I was also taking Advil for several weeks because of a kidney stone, and normally I avoidNSAIDS but the doctor insisted it would be fine.
So this has been going on for over 3 months. 2 years ago I was diagnosed with breast cancer, and before that was pandemic, so this was to be the summer I finally get to do things with my kids before they’re all grown, but no, one thing gets better and another pops up…lol.
My diet has been good for several years now, except occasional treats and Diet Coke. I’ve been gluten free for 9 years. Not a lot of processed food, etc. over the last 3 months I’ve settled into a food routine to help lessen trips to the bathroom. It is not what I’d normally eat, but it worked well enough that, with Imodium, I was able to take my kids to the coast for a couple days and hiked 2 miles far from a bathroom and didn’t stress about it. The food I was able to tolerate was oatmeal with applesauce, gluten free bread with turkey deli meat, cheese, mustard, and chicken and broccoli, mashed potatoes or hash browns.
I switched to the Phase One plan here a few days ago, and it has made things a lot worse. And by worse, I mean increased pain and urgency, within 30 minutes of eating. I’m wondering if it’s the increase in fat? I had bacon one day, and instead of chicken breasts I’ve had more darker meat because it’s cheaper. Is it usual to get worse before getting better? Or is it a sign something is irritating me more?
I have chronic conditions from cancer treatment. I’m also on abemaciclib that causes fatigue, and hormone therapies that cause me pain and insomnia. I’m also on humira already for psoriatic arthritis. And I have to take calcium and vitamin D supplements because I get Zometa infusions and am meds that deplete bone.
I now have a prescription for the steroid for MC and I am completely overwhelmed. I don’t need yet another drug to wreak havoc on my immune system and cause side effects. But if it works… the doctor says I may have to be on it forever, and I refuse to do that. But I can’t live like this.
And why did I develop MC when already on humira? Can I fix this and get in remission with just diet changes and allowing the colon to heal?
Thank you. I’m so exhausted and done with health issues.
New & questions about multiple meds and diet
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Re: New & questions about multiple meds and diet
Welcome to the group. I'm sorry to hear about all the health problems. And no, it isn't normal to get worse before getting better. I have a hunch that all the biologicals you're using may be affecting your symptoms due to diet changes. For most of us, yes, it's possible to control this disease completely without medications. But unfortunately, I have no idea whether you can do that while taking all the medications you're already taking. These are uncharted waters. We haven't had great success treating MC with biologicals, although many of them are prescribed to treat MC these days. We've had other members of this forum who were unable to achieve remission by diet changes because of the biological they were taking to suppress psoriatic arthritis, for example.
I believe if I were in your situation, rather than attempt a phase 1 elimination diet, I would simply try to avoid foods that we know trigger MC reactions. Oats, for example, are a known trigger for MC, despite what the so-called "experts" claim. The avenin in oats leads to a slower development of an Intolerance than the gluten in wheat, but it will eventually cause a reaction.
After I had been in remission for years, I did an oat challenge, using certified gluten-free oat cereal three times per week. it took six weeks for the diarrhea to begin, at which point I stopped eating the oats, and it took another six weeks for the diarrhea to stop. The diarrhea would begin about three hours after eating the oats — clearly a gluten type of reaction. And I rechecked it after I regained remission, by eating a bowl of that cereal again, and 3 hours later, I had diarrhea — proof that I was producing antibodies against oats.
Try eliminating oats, to see if that will help. And if you list the foods you're eating, when you have time, I'll be happy to go over them and see if anything else looks suspicious.
I hope this helps.
Tex
I believe if I were in your situation, rather than attempt a phase 1 elimination diet, I would simply try to avoid foods that we know trigger MC reactions. Oats, for example, are a known trigger for MC, despite what the so-called "experts" claim. The avenin in oats leads to a slower development of an Intolerance than the gluten in wheat, but it will eventually cause a reaction.
After I had been in remission for years, I did an oat challenge, using certified gluten-free oat cereal three times per week. it took six weeks for the diarrhea to begin, at which point I stopped eating the oats, and it took another six weeks for the diarrhea to stop. The diarrhea would begin about three hours after eating the oats — clearly a gluten type of reaction. And I rechecked it after I regained remission, by eating a bowl of that cereal again, and 3 hours later, I had diarrhea — proof that I was producing antibodies against oats.
Try eliminating oats, to see if that will help. And if you list the foods you're eating, when you have time, I'll be happy to go over them and see if anything else looks suspicious.
I hope this helps.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: New & questions about multiple meds and diet
Thank you so much for the thoughtful response. It has been very helpful! I apologize for not getting back sooner, I’ve been preparing my mom’s new house to move her close to me from across the country and, well, I’ve been swamped!
I am driving her across the country next week, so am figuring out a food plan for that week. Budesonide has not worked. I will be taking a 2-week drug holiday from the Verzenio to help alleviate fatigue and not feeling well during the trip, and hopefully that will also help me see if it is contributing to the MC flare.
I stopped eating oats after your reply. After about a month I decided to have some oatmeal because there wasn’t much else in the house, and the next day I had a horrible 5 hours of cramping and D. So no more oats!
I am currently eating white rice, rice cakes, well-cooked broccoli and carrots, berry fruit spread (unsweetened), sunflower seed butter, gluten free bread (rice flour the only grain), chicken, tuna, salmon, olive oil, vinegar, applesauce, cheese and yogurt. I’m going to remove the dairy this week to see if that helps. I have peanut butter sometimes, too, and it doesn’t seem to have a problem. I was going to try some banana baby food this week as I’m looking for easily transported food for the trip (and flight there). I can also drink bone broth, and I’ve tried a small amount of lentils without issue.
Biggest question right now is how do I know what food triggers a problem? It’s usually 15 minutes to 2 hours after eating. But is it what I just ate that’s still in my stomach I’m reacting to, or is it from a couple meals ago that is now entering the colon?
Thanks again for all your help!
I am driving her across the country next week, so am figuring out a food plan for that week. Budesonide has not worked. I will be taking a 2-week drug holiday from the Verzenio to help alleviate fatigue and not feeling well during the trip, and hopefully that will also help me see if it is contributing to the MC flare.
I stopped eating oats after your reply. After about a month I decided to have some oatmeal because there wasn’t much else in the house, and the next day I had a horrible 5 hours of cramping and D. So no more oats!
I am currently eating white rice, rice cakes, well-cooked broccoli and carrots, berry fruit spread (unsweetened), sunflower seed butter, gluten free bread (rice flour the only grain), chicken, tuna, salmon, olive oil, vinegar, applesauce, cheese and yogurt. I’m going to remove the dairy this week to see if that helps. I have peanut butter sometimes, too, and it doesn’t seem to have a problem. I was going to try some banana baby food this week as I’m looking for easily transported food for the trip (and flight there). I can also drink bone broth, and I’ve tried a small amount of lentils without issue.
Biggest question right now is how do I know what food triggers a problem? It’s usually 15 minutes to 2 hours after eating. But is it what I just ate that’s still in my stomach I’m reacting to, or is it from a couple meals ago that is now entering the colon?
Thanks again for all your help!
Re: New & questions about multiple meds and diet
Here's how reactions triggered by the immune system normally take place:
IgE reactions occur from about 10 seconds to 15 or 20 minutes after exposure to the food. These are classic allergic reactions, sometimes leading to anaphylactic reactions. These are primarily upper respiratory or skin reactions
IgA reactions usually occur about 3 to 6 hours after exposure to the food, but can sometimes occur as much as a day later (in the case of some dairy reactions). These are food sensitivity or food intolerance reactions associated with intestinal inflammation.
A reaction that occurs two hours after eating might either have been an IgA reaction triggered in the stomach, or an IgA reaction triggered in the intestines, associated with rapid transit.
It's possible that your diet may be safe, but some of us react to chicken, tuna, salmon, commercially processed gluten-free bread (even when the listed individual ingredients appear to be safe) and cheese or yogurt, of course. Turkey, lamb, goat, venison, duck, goose, shellfish, and freshwater fish (in some cases) are safer alternative protein sources.
I hope this helps,
Tex
IgE reactions occur from about 10 seconds to 15 or 20 minutes after exposure to the food. These are classic allergic reactions, sometimes leading to anaphylactic reactions. These are primarily upper respiratory or skin reactions
IgA reactions usually occur about 3 to 6 hours after exposure to the food, but can sometimes occur as much as a day later (in the case of some dairy reactions). These are food sensitivity or food intolerance reactions associated with intestinal inflammation.
A reaction that occurs two hours after eating might either have been an IgA reaction triggered in the stomach, or an IgA reaction triggered in the intestines, associated with rapid transit.
It's possible that your diet may be safe, but some of us react to chicken, tuna, salmon, commercially processed gluten-free bread (even when the listed individual ingredients appear to be safe) and cheese or yogurt, of course. Turkey, lamb, goat, venison, duck, goose, shellfish, and freshwater fish (in some cases) are safer alternative protein sources.
I hope this helps,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: New & questions about multiple meds and diet
Thank you!
I was trying to find easy shelf-stable food for the road trip as I know what I’ll be able to find on the road will be tricky. That is why I’ve stuck with chicken and fish, but I will see if I can find some sort of turkey. I am minimizing my diet as much as possible this week to hopefully find a way to not have to stop repeatedly for a bathroom :)
The info about the allergy vs sensitivity timelines is very helpful!
I was trying to find easy shelf-stable food for the road trip as I know what I’ll be able to find on the road will be tricky. That is why I’ve stuck with chicken and fish, but I will see if I can find some sort of turkey. I am minimizing my diet as much as possible this week to hopefully find a way to not have to stop repeatedly for a bathroom :)
The info about the allergy vs sensitivity timelines is very helpful!