Figuring out food triggers.

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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

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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

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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