Figuring out food triggers.

[Coll]

Hi All,
Brandy- I hate to do another round of pepto since the ringing in my ears gets so loud. I've found I can take imodium and pepto short term to stop the flair. Then I go back to my safe foods and it stops the WD.
I do have more questions tho, and I know you all can help.
- What is it about Rice Chex that would bother some of us?
- The Enterolab testing showed a score of 10 for Chicken Eggs - does that mean I could eat Quail or Duck eggs??
- Apples in any form - kill me. Why? What is in apples, that might get me? Seems so weird. Apple cider vinegar is a big nono than too, I'm assuming.
- Does Lomotil work better than Imodium? What is the difference- other than 1 requiring a script? Why is Lomotil restricted and the other is not? Lomotil more dangerous? Since it's opioid? Can you take too much?
- Currently, I'm only in the bathroom 1x / day but the stool has little or no form. Am I being impatient in wanting form to the stool?
I still only eat the basic stage 1 foods. No vegetables, no fruits, no spices except salt, no grains except jasmine rice. 1 small yellow or sweet potato each day. Bone broth everyday. Meat and rice are really my whole diet.
Thank you for your time and thoughts!
Colleen

[tex]

- What is it about Rice Chex that would bother some of us?

I have to guess at the answer — either it has too many ingredients and the cumulative effect is a problem, or it sometimes crowds the 20 parts-per-million gluten limit too much for some of us. It's a problem for many of us only when we're trying to break out of a flare — when we're in remission Rice Chex is usually OK.

- The Enterolab testing showed a score of 10 for Chicken Eggs - does that mean I could eat Quail or Duck eggs??

Yes, probably. They don't work for everyone.

- Apples in any form - kill me. Why? What is in apples, that might get me? Seems so weird. Apple cider vinegar is a big nono than too, I'm assuming.

Most likely you're unable to handle the fiber. Apples contain a lot of malic acid, also, so that could be a problem for some people. Apple cider wouldn't have a fiber issue.

- Does Lomotil work better than Imodium? What is the difference- other than 1 requiring a script? Why is Lomotil restricted and the other is not? Lomotil more dangerous? Since it's opioid? Can you take too much?

Lomotil and Loperamide (Imodium) are in the same class of drugs. I really don't know whether Lomotil is more dangerous than Imodium, but since it's a prescription drug I have a hunch that the Atropine is added simply to guarantee that no one will overdose (because it will make anyone sick if they take too much) — and so that we'll think that Lomotil is more powerful. I'm not sure what the dose limit on Lomotil might be, but most people can safely take up to 8 Imodium capsules (if needed). If you take more than you need, constipation will probably be a problem, and that's usually a sufficient overdose deterrent for most folks. Imodium is generally one of the safest medications on the shelf.

Based on the posts I've seen here over the years, I'd have to say that Imodium usually works just as well or better than Lomotil for most people, but there are exceptions who prefer Lomotil.

- Currently, I'm only in the bathroom 1x / day but the stool has little or no form. Am I being impatient in wanting form to the stool?

The intestines heal slowly. It sounds as though you're making progress; you just need more healing time. Anyway, those are my thoughts.

Tex

[Coll]

Hi Tex,
In my seeming unending quest to rid myself of the D, I tried some of the cholestyramine I had left from last year when I stopped using it. Back then, it seemed to help, but then it didn't. So I stopped it. But I figured back then I did not know what else I was allergic to - and now I do.
I took the cholestyramine and 12 hours later- no D. I was normal.
I've had 3 days of being normal - first time in over 18 months.
I've been reading and re-reading all the posts from those who have taken cholestyramine. I noted Polly (moderator) seems to be quite experienced with it. I wondered about staying on the med - how long? What dosage? I'm taking 4 oz prior to each meal right now. I'm going to have to ask the doc for a refill on the script, but I'd like to know how much to take before I do. I really don't believe much of what he said about this condition since he said "It doesnt matter what you eat".
Yeah, right.
I sure hope this brief respite from D lasts. BAM looks like it was playing a big part in why I could not reach remission. Maybe I'm there to stay?? Hope so.
Thank you in advance for your help!
Colleen

[tex]

Colleen,

That's great news. After reading all the posts here for 15 years, I still maintain that cholestyramine is not a good option early on, because in most cases, it appears that the intestines must have achieved some degree of healing before cholestyramine will work. That said, it can sometimes seem like a miracle drug when used after a patient has followed the diet for a long enough period without success that it has become obvious that the diet alone is just not enough.

We're all different. Some of us take as few as one or two packets a day, while others need more. One member takes 8 packets per day, as I recall. If you want to take as little as possible, you'll have to experiment by lowering the dose until you find the minimum dose that will provide the control you want. If you reach a dose level that's not adequate, going back up a step or two should allow you to regain control.

Your GP shouldn't hesitate to write a prescription for you because cholestyramine is one of the safest medications available. It's mostly prescribed to lower cholesterol, and few things make a doctor happier than helping someone to lower their cholesterol. He or she should be grinning from ear to ear as they write out the prescription.

You're very welcome.

Tex

[1inamillion]

Coleen,
Your situation sounds JUST like my flares, I was just reading you other questions. Im at 10x a day...but i try to eat less when I have a flare. I dont starve myself, just eat what I need. I have been living with this for about 10 years. Ups & downs but my doc put me on sulfasalazine and I had drastic improvements...until I got accidentally glutened a month ago. I tried budesonide too...no dice. I take pepto if Im having a flare & know I wont have easy access to a bathroom but it doesnt always work. But I try not to take too much pepto...maybe 3 a day on a real bad day. I love "urban Moonshine: Calm Tummy Bitters". That will calm it down for long enough to make it to the next exit on the freeway at least! Good luck sister!
1inamillion

Tex- I know you said not to be discouraged but my couple day improvement just collapsed back to square one or worse. I feel six seconds from tears all the time. The budesonide is not working. It seemed my last hope. I've been gluten free egg free and dairy free since January. Now I only eat 5 things and it still does not help.
Question- my GI told me I could take as much pepto as I wanted. I read somewhere on this site some people are helped by taking 8 pepto/ day for not more than 8 weeks. Why? What happens in 8 weeks? What are the risks here?
Since pepto is the only thing that helps me function, seems like the thing to do. But I'd like to know the risks first. Do you spread the pepto out over the day? Take em all at once? Liquid or chewable? Pepto ultra or regular? Ok to keep taking the budesonide with the pepto?
So much I don't know.
Bless you and your crew for helping people like me. I'd be hopelessly adrift without you.
Thank you,
Colleen

[Coll]

Hi Tex and all,
I have been away healing and biding my time on my limited diet and it is working. I now take NO medication. The bonus is I have NO D!
I weaned myself off cholestyramine around 5-6 months ago. I have not looked back. Every single day I am thankful I stuck to the restrictions and am now completely `normal'. And it took almost 3 years.
I can take vitamins now, my hair stopped falling out, I'm only on the bathroom 1x/day and there is no trace of D.
I am GF, DF, SF, Oat F, corn Free as much as possible, ( which is extremely difficult) and I'm finally gaining some weight. I lost almost 40 pounds and I only weighed 125 to start with - so it wasn't pretty. I'm 5'6". I looked like a walking skeleton.
I had a salad today! Yay! I'm adding foods slowly and cautiously since I live in abject terror of going back to where I was!
Making my own bread, which is kinda fun really. And I'm learning everyday.
Of course I have some more questions. I read that some with MC suffer from constipation. How is this possible? I thought the inflammation pulled water into the gut. What am I missing?

Tex, you said you first had to limit corn in your diet but as time went on you were able to eat it again. Why is it that some foods may be added back into the diet with time but not others?
Just wondering.
My heart goes out to those suffering with this disease.
Brandy, I hope you are doing well. Still on the cholestyramine?
I need to get back on the ball and read the posts!
Thank you very much for all the help and I'd like, to be counted among the success stories! May it always be so!!

Colleen

[tex]

Hi Colleen,

Thanks for posting this update. That's great news that you've finally been able to get this disease under control. You had to fight a long, tough, battle, but obviously your efforts paid off.

In regard to your questions, I'm not sure whether anyone knows why some of us have diarrhea, while others have constipation as the predominant symptom. That may depend on our normal status before we developed MC. In my case, I had alternating diarrhea and constipation, and I had some degree of constipation all my life. I'm not sure that the inflammation directly causes the infusion of water into the colon. The Inflammation interferes with digestion, and that may lead to corrupted chemical signaling during the digestive process, which in most cases causes secretory (watery) diarrhea, whereas in other cases it causes osmotic (mushy) diarrhea, or even constipation. The relative electrolyte balances in the colon probably determine whether there's normal water absorption, or abnormal water infusion, but again, I'm not sure it's even known how those electrolyte imbalances develop. Basically, though, you're correct, in that the imbalance is a result of the inflammation.

This will have to be a guess, since we're in uncharted waters here, but I suspect that foods that fall into the category of those 11 other antigenic foods, as classified by EnteroLab, become allergenic only after our immune system goes into overdrive, and becomes hypersensitive after an extended period of reacting to gluten. The longer we react, the more sensitive our immune system becomes, and the more likely we are to react to other foods that produce peptides similar to the peptides of gluten that initially cause us to start reacting. In other words, foods such as corn, for example, may begin to trigger reactions only because our immune system has become so sensitive that it reacts to the zein protein in corn, simply because when digested, it results in peptides similar to certain reactive peptides that result from the digestion of gluten (in wheat). So after our immune system begins to settle down, as we heal, we no longer react to proteins that have an amino acid molecular structure that's only similar to gluten. We will still react to gluten (in wheat), of course, because that's the issue that caused us to begin to react to foods (wheat) in the first place.

Your recovery is inspiring, so I'm adding a copy of this entire topic to the "Member Success Stories" category.

Thanks for the update, and I hope your remission lasts forever. Even if you should encounter a bump or two in the road, in the future, now you know how to handle it.

Tex

[Fradeh]

Let me preface this note by giving Tex and all of the others who established this MC board many heartfelt thanks. My husband contracted MC as a result of the cancer medication Opdivo. He had an endoscopy and was diagnosed with MC about 2 years ago. Gastro put him on Budesonide. While that worked, he had several relapses. I did not want him to continue taking the Budesonide for many obvious reasons, so I researched and found this MC board. I then started my hubby on a carefully and pretty exacting GF eating plan. He is now tapering to the one a day part of the Budesonide. He reports a tremendous improvement with his stomach
problems. He no longer has a pain in his stomach that was on the lower left side. His bowel movements are now normal.
My question is: Is it likely that a GF plan could start such a dramatic gut health improvement in just two weeks? I am very anxious to know if this tremendous improvement will continue when is off the Budesonide completely. I also read in your Board to taper more slowly than the script directed-so I advised hubby after one a day on the Budesonide, try one every other day, one every third day etc.
Any input, feedback (excuse the pun)-very greatly appreciated with much gratitude for all you do.

[Cynthia]

Hi Fradeh,

I can only speak to my own experience, we are all so different, which makes this so difficult as one size really doesn’t fit all. I struggled for a long time trying diet alone for a long time (no gluten, dairy, soy, eggs,chicken, rice, beef) based on the Enterolabs food testing. I could not seem to get things under control. My doctor kept pushing Budesinide and I decided that if I was going to do that, I would go whole hog. I did 9mg for a full 11 weeks before going down to 6mg for another 10 weeks, then 3mg for ten weeks. Then I did 3mg every other day, then every three days for quite awhile. I had read that some people seemed to relapse because they either weren’t on it long enough or tapered off too quickly. I wanted to really hedge my bets. I was on Budesinide for about 8months in total. I kept my dietary restrictions in tact pretty good in the beginning and as I started to feel better I experimented with this and that BUT NEVER GLUTEN! It really stuck with me that most allergic reacting foods clear your system quite quickly, but not gluten, and I did not want to risk that kind of backward move. I am now eating most things, which is not to say my digestion is perfect. Most food is home cooked by me, I rarely eat out. I may still have an off day, or eat something that triggers cramping, etc but I do have my life back. But I don’t ever want to mess with gluten. And I have learned so many different flours and products that I don’t miss it at all, so it isn’t a hardship. I am only 8 months away from the Budesinide so I still am wary, who knows if I am out of the woods or for how long.
My own reasoning for myself was that I felt that the Budesinide took the inflammation down so that the new way of eating had a fighting chance to keep things under control while slowly tapering off the drug and healing all the while.
Hats off to you being the one in charge of the eating plan, it’s a learning curve to say the least.
I wish you and your husband good luck with this terrible disease and hope any of this might be useful to know.

[Fradeh]

Dear Cynthia,
I can't thank you enough for your super encouraging and very informative reply. I will definitely tell Bob to keep taking the one pill of Budesonide every other day and then every third day for a long time. I was extremely fortunate to have a doctor friend write me a script with 3 refills of it so right now we have plenty of it. Amazingly I only have to pay about $14.00 as hubbys' medicare and his supplemental insurance are covering it now. The first time he needed it, I tried fruitlessly to have our uncaring gastro doctor recommend some other medication or a generic budesonide as it cost $1200. to get it filled. The gastros' office did not call me back as promised and so we were stuck paying that ridiculous amount for it. A day after we filled the script, his office called and the nurse asked "Did you get that expensive medicine for your husband yet?". After I confirmed I had, she said "Oh you should have called us-the dr. can prescribe it for 3 mg a day taken 3 X a day and you can get it for $50.00." Too little too late. I have found our gastro to be essentially useless.
I really believe the gluten free approach you advocate, along with so many others here, is the answer. I am very convinced that most physicians don't have a clue what to do for MC. Thank heaven there are people like yourself and others on this Board who "think out of the box" and experiment with what works. Much gratitude.
Fradeh

[Cynthia]

You are more than welcome Fradeh!
It is so difficult to navigate, especially at the beginning. I read and read and tried different things, stumbled, tried other things and eventually found myself here. In the end I still had to figure out what I thought would work best for me, which can take you on a lot of windy paths. And I still don’t feel comfortable saying I have this beat, but hey, I’ll take beaten for as long as I get

Lots of good information here from lots of folks with many different perspectives and personal journeys. We can all find valuable information here.
Something I remember running across in my reading was a study about using low dose Budesinide long term, but hopefully diet changes along with what you are doing now will make that unnecessary!
But just for curiosity sake, I’ll attach it

https://gut.bmj.com/content/65/1/47

And somewhere else I found a post of someone and I sort of followed their protocol but went even further before stepping down my dosing. Here’s what that persons did:
“ I started with 3 capsules (9 mg) every day for 6 weeks (not 4 weeks which is what many go with). Then 2 capsules every day for another 6 weeks. Then 1 capsule every day for 6 weeks. Then 1 capsule every other day for 6 weeks. Then 1 capsule every third day for 6 weeks. Then 1 capsule every fourth day for 6 weeks and finally 1 capsule every fifth day for 6 weeks. This is NOT the standard taper protocol but is one that we believe has a better chance at long term success and my GI doctor and I are in lock step agreement on this. I'm now at the stage of 1 capsule every third day and it is going great. This very slow taper is something you may want to discuss with your GI doctor. ”

Again, best of luck!

[Marcia K]

Hello, Colleen. I'm sorry that you're having such a difficult time. I am a Pepto success story. I took 2 tablets/4x day for 8 weeks. After a few weeks I cut back to 6/day because I became constipated (if you can imagine that). My GI said not to chew the tablets or my tongue would turn black, so I took them with water. I did not have any adverse reactions from the Pepto. During the 8 weeks I eliminated many foods & read Tex's book. I have been in remission for 7+ years without any medication. I hope you receive Tex's book soon. It was very helpful to me. Best wishes,

[Cynthia]

It’s true that many have found success with Pepto. Alas I was unable to take it because I only have one kidney. Pepto is not an option if your have kidney disease for whatever reason.

[Fradeh]

Dear Cynthia,
This is a strange coincidence, but Bob also has one kidney. He lost one due to kidney cancer in 2008. He has been working on maintaining stability from the cancer since 2017, and the cancer drug Opdivo he was given actually caused the MC. Not sure if this is what happened to you too.
Once again many thanks for sharing the taper schedule. I took a picture of your post and gave it to Bob to follow. I really feel this is the way to go in conjunction with the GF diet .He reports feeling much improved since he has been GF for now 3 weeks! I am so hoping this lasts as he is on the one pill a day part of the Budesonide taper. Hopefully with that super slower taper we can have a remission too.
I will keep you posted and please do the same. I attempted to send you a PM but I dont think it was sent properly.
Have a peace filled weekend.
Fradeh

[Cynthia]

Hi Fradeh,

A strange coincidence indeed! I was diagnosed with cancer but when I finally got the kidney out three months later it turned out to be a rare combination of benign tumours. I almost didn’t post about the Pepto but glad I did, although Bob probably already knows he can’t take it.
I tried to PM you as well but looks like my message is just sitting in my outbox. Oh technology!
Please do keep me posted on his progress and if I have any other updates I will be sure to post as well