Help!

[Kg16]

First of all I want to say thank you for making this forum. I bought the microscopic colitis book by Wayne Persky and it has been incredibly helpful.
I was diagnosed this past February and first started showing symptoms late December. My dr. Started me on budesonide but I lasted 3 weeks. It did nothing for me during that time and it gave me bad side effects.
Currently I’m working with a naturopath who put me on a low histamine/SIBO diet and it’s working ok if I take my Cholestyramine (I hate it)!!!
The last two nights I’ve taken Benadryl at night and I have not had D. I’m actually constipated. I decided to try it because I read the book and the mast cells where interesting to me. Ever since I was little I’ve suffered from skin rashes and at some point had terrible dermatographia.
Could antihistamines and diet be the solution for me? Could I actually live without Cholestyramine?

I had my gallbladder removed Jan 2009 and went completely GF in 2011. Going gluten free completely changed my life for the better
Is it possible to heal from MC or will I forever have to take something to control it?
Thank you!!

[tex]

Hi,

Welcome to the board.Yes, it's possible to control MC without taking any medications. Many of us here control our MC symptoms by diet only. Since you seem to have mast cell issues, please be aware that mast cell reactions associated with MC are usually due to a diamine oxidase (DAO) enzyme deficiency. Normally, DAO purges excess histamine from the body. MC appears to deplete DAO. Because of that, excess mast cells are not eliminated from circulation as they normally would be, so populations tend to increase for some of us, and after they surpass a certain threshold, we may experience mast cell reactions. Antihistamines may help for a while, but experience has shown that like many medications, when used for long periods, antihistamines may eventually begin to lose efficacy for us. Personally, I've found that a DAO supplement helps. I use a product known as HisatResist, but there are others. Using the product according to directions, I'm able to eat limited amounts of high histamine foods, without any symptoms. If I forget to take the HistaResist in time, my legs will develop an itchy rash, beginning at the ankles and spreading upward, so I'm reminded that it works.

Because you been gluten free for many years, you may be only a few days away from finding a solution. Gluten has a 120 day half-life, whereas most foods have only a five or six day half-life. Therefore, cutting any foods besides gluten out of your diet, should show results within a few days, if those foods are causing your immune system to produce antibodies. The casein in all dairy products is constipating for some people. I suggest that if you're not already avoiding them, eliminate all dairy products, all foods that contain soy or any of its derivatives, and chicken eggs. After a few days, you should see an improvement. If so, after a few more days you should be in remission. If you are, then you can add those three foods back into your diet to test them to see if you might be able to reintroduce them. But test only one food at a time, for up to three days. If you began to react before the three days is over, that food is a problem. If you can successfully eat it for three days without a reaction,that food is probably safe to add back into your diet. Then go on to test another food.

You might still need the colestyramine, but if you do the elimination diet to avoid the three foods I mentioned, eliminate the colestyramine while you avoid those foods, and while you test those foods before adding them back into your diet. if avoiding those three foods will not bring remission, then you may need to continue to take the colestyramine.

I hope this helps. Again, welcome aboard, and please feel free to ask anything.

Tex

[Kg16]

Tex,
Thank you so much for taking the time to reply back to me. I just wanted to say that I’ve been off dairy, soy and eggs since my symptoms started and was seeing improvement with pepto bismol then my dr put me on carafate and after diagnosis he put me on Cholestyramine and Budesonide which did not help at all.
I feel like I’m doing the very best I can as far as diet goes but I dread the thought of having to live taking Cholestyramine. Why is it that some people cannot live without it? Is there anything else that I can do to not take it? I tried psyllium husk but feel like it didn’t work or maybe I wasn’t taking enough or didn’t give it enough time.
Truly I think I’m still coming to terms with this new diagnosis and it’s hard to accept having to take that powder before I eat. If there was anything I could do to heal completely I would do it.
How long would you say I should be on the antihistamines before I try tapering off Cholestyramine to see if it works?
Thank you for the natural al to histamine blocker recommendation I will check it out!!
Also, do you believe some people can 100% heal from this?
So very grateful
K.

Hi,

Welcome to the board.Yes, it's possible to control MC without taking any medications. Many of us here control our MC symptoms by diet only. Since you seem to have mast cell issues, please be aware that mast cell reactions associated with MC are usually due to a diamine oxidase (DAO) enzyme deficiency. Normally, DAO purges excess histamine from the body. MC appears to deplete DAO. Because of that, excess mast cells are not eliminated from circulation as they normally would be, so populations tend to increase for some of us, and after they surpass a certain threshold, we may experience mast cell reactions. Antihistamines may help for a while, but experience has shown that like many medications, when used for long periods, antihistamines may eventually begin to lose efficacy for us. Personally, I've found that a DAO supplement helps. I use a product known as HisatResist, but there are others. Using the product according to directions, I'm able to eat limited amounts of high histamine foods, without any symptoms. If I forget to take the HistaResist in time, my legs will develop an itchy rash, beginning at the ankles and spreading upward, so I'm reminded that it works.

Because you been gluten free for many years, you may be only a few days away from finding a solution. Gluten has a 120 day half-life, whereas most foods have only a five or six day half-life. Therefore, cutting any foods besides gluten out of your diet, should show results within a few days, if those foods are causing your immune system to produce antibodies. The casein in all dairy products is constipating for some people. I suggest that if you're not already avoiding them, eliminate all dairy products, all foods that contain soy or any of its derivatives, and chicken eggs. After a few days, you should see an improvement. If so, after a few more days you should be in remission. If you are, then you can add those three foods back into your diet to test them to see if you might be able to reintroduce them. But test only one food at a time, for up to three days. If you began to react before the three days is over, that food is a problem. If you can successfully eat it for three days without a reaction,that food is probably safe to add back into your diet. Then go on to test another food.

You might still need the colestyramine, but if you do the elimination diet to avoid the three foods I mentioned, eliminate the colestyramine while you avoid those foods, and while you test those foods before adding them back into your diet. if avoiding those three foods will not bring remission, then you may need to continue to take the colestyramine.

I hope this helps. Again, welcome aboard, and please feel free to ask anything.

Tex

[tex]

When the diet doesn't work, the remaining dominant issue preventing remission is usually BAM. The only known way to resolve BAM is with cholestyramine.

How long would you say I should be on the antihistamines before I try tapering off Cholestyramine to see if it works?

I don't understand that question, What histamines?

[quote="Kg16"Also, do you believe some people can 100% heal from this?[/quote]

It's possible to heal completely (return to normal cellular histology in the cells of the epithelium in your colon), but that won't erase any food sensitivities — food sensitivities are virtually always permanent.

Tex

[HockeyMom]

I’m confused. Do you have any sort of control with the cholestyramine ? It doesn’t sound like it if you are still messing around with antihistamines. And to my simple little mind it sounds like the antihistamines are what you need if they constipate you! Stop the cholestyramine cold turkey and see how you do with just diet and antihistamines .

I tried the antihistamine trial for like 6 months religiously with a strict diet with no noticeable improvement. It sounds like it helps you significantly. You may find out that since you’ve had your gallbladder out, just a small dose of cholestyramine is needed .

My 2 cents...

Laine
And Drinking gritty orange powder twice a day is a very small price to pay/inconvenience to get my life back! That’s the way I look at it anyway

[Kg16]

Hi!
Thank you for your help. I’m still figuring this out. I was taking Cholestyramine 2-3 times daily and on a very strict diet. My naturopathic dr put me on the SIBO antihistamine protocol and currently eating very limited. I was still waking up every morning with cramps and very lose stools and going 2-4 times a day. Since I read the book I remember the part about mast cells and antihistamines and decided to take a shot of Benadryl, the next morning I didn’t go to the bathroom and that has been like that for the past three days. Today I went and had very small and formed stools. I have been taking Claritin in the AM and Benadryl at night. Also, I usually have eye pain daily and since AI started taking the histamine I haven’t had it. I don’t know if it’s too soon to claim victory but I’m feeling hopeful.
And like you said and Tex as well, I might still need the Cholestyramine but maybe in very small amounts.
Last time I tried weaning off the Cholestyramine was very traumatic so emotionally not ready for it just yet. Today I haven’t taken it but planning on taking one before dinner.
I don’t know what I would do with all this support. I am so very thankful.

I’m confused. Do you have any sort of control with the cholestyramine ? It doesn’t sound like it if you are still messing around with antihistamines. And to my simple little mind it sounds like the antihistamines are what you need if they constipate you! Stop the cholestyramine cold turkey and see how you do with just diet and antihistamines .

I tried the antihistamine trial for like 6 months religiously with a strict diet with no noticeable improvement. It sounds like it helps you significantly. You may find out that since you’ve had your gallbladder out, just a small dose of cholestyramine is needed .

My 2 cents...

Laine
And Drinking gritty orange powder twice a day is a very small price to pay/inconvenience to get my life back! That’s the way I look at it anyway

[Kg16]

Hi Tex,
I’m taking Claritin AM and Benadryl PM. I ordered the DOA supplements and waiting on those. I was just wondering if I should eventually try to taper off Cholestyramine and how long I should be on antihistamines before I attempted to do that. Also, would you recommend doing enterolab? I just did one called GI map, do you know anything about that test?
I’m getting two other copies of the book to give to my GI dr and my naturopath.

Blessings
K

When the diet doesn't work, the remaining dominant issue preventing remission is usually BAM. The only known way to resolve BAM is with cholestyramine.

How long would you say I should be on the antihistamines before I try tapering off Cholestyramine to see if it works?

I don't understand that question, What histamines?

[quote="Kg16"Also, do you believe some people can 100% heal from this?

It's possible to heal completely (return to normal cellular histology in the cells of the epithelium in your colon), but that won't erase any food sensitivities — food sensitivities are virtually always permanent.

Tex
[/quote]

[Kg16]

Also, I forgot to say this. When my gallbladder was removed in 2009 I had explosive diarrhea that didn’t go away until I removed gluten. I was completely fine without any diarrhea until Jan 2021. I think MC brought in the BAM. If that’s the case, would lowering inflammation resolve the BAM or is that here to stay? I know it’s BaM because my D is yellow and it really burns. Sometimes I have little stones that look like gallstones. That is so scary!! They go away while on Cholestyramine.

Thanks so much Tex!

K

When the diet doesn't work, the remaining dominant issue preventing remission is usually BAM. The only known way to resolve BAM is with cholestyramine.

How long would you say I should be on the antihistamines before I try tapering off Cholestyramine to see if it works?

I don't understand that question, What histamines?

[quote="Kg16"Also, do you believe some people can 100% heal from this?

It's possible to heal completely (return to normal cellular histology in the cells of the epithelium in your colon), but that won't erase any food sensitivities — food sensitivities are virtually always permanent.

Tex
[/quote]

[tex]

In your last post it sounds as though BAM might be the main problem, but before you try increasing the dose (of cholestyramine), it might be worthwhile to try continuing the antihistamines while stopping the cholestyramine for a day or so, as Laine suggested, to see if that might help. If it doesn't help, then try increasing the cholestyramine.

BAM has nothing to do with anti-body-based inflammation. BAM is strictly due to the irritation caused by excessive bile flow from the liver. Normally, unused bile is reabsorbed in the terminal ileum and recycled. If too much bile remains unabsorbed, then when it reaches the colon. it tends to cause diarrhea.

I'm guessing that what appears to be gallstones is something else,if you don't have a gallbladder. Didn't your doctor prescribe colestyramine in 2009, when your gallbladder was removed? if gluten stopped the diarrhea then, either you already had microscopic colitis or celiac disease, or the excess bile flow due to the gallbladder surgery, triggered your microscopic colitis development.

Tex

[Kg16]

My dr never prescribed Cholestyramine back in 2009. Two years after surgery Another dr said I might have celiac sprue and suggested I try a GF diet. A week later Diarrhea completely stopped, energy levels where amazing, no more rashes on my face and the list goes on. Then come 2021 and BOOM first time ever with watery Diarrhea and non stop bathroom trips.
I do want to say, maybe two weeks before the sudden onset I got sick. It was like a virus type thing. I felt extremely fatigued and I had a dry throat and one of my salivary glands became inflamed. I chalked it off on too much exercise. I had just started going to the gym.
Thank you for listening!

K

In your last post it sounds as though BAM might be the main problem, but before you try increasing the dose (of cholestyramine), it might be worthwhile to try continuing the antihistamines while stopping the cholestyramine for a day or so, as Laine suggested, to see if that might help. If it doesn't help, then try increasing the cholestyramine.

BAM has nothing to do with anti-body-based inflammation. BAM is strictly due to the irritation caused by excessive bile flow from the liver. Normally, unused bile is reabsorbed in the terminal ileum and recycled. If too much bile remains unabsorbed, then when it reaches the colon. it tends to cause diarrhea.

I'm guessing that what appears to be gallstones is something else,if you don't have a gallbladder. Didn't your doctor prescribe colestyramine in 2009, when your gallbladder was removed? if gluten stopped the diarrhea then, either you already had microscopic colitis or celiac disease, or the excess bile flow due to the gallbladder surgery, triggered your microscopic colitis development.

Tex

[Kg16]

I forgot to mention again... I had a colonoscopy in 2019 because I was experiencing bloating, flatulence and mucus. Biopsies where taken during that time which came back negative. No watery or explosive diarrhea until Jan 2021

In your last post it sounds as though BAM might be the main problem, but before you try increasing the dose (of cholestyramine), it might be worthwhile to try continuing the antihistamines while stopping the cholestyramine for a day or so, as Laine suggested, to see if that might help. If it doesn't help, then try increasing the cholestyramine.

BAM has nothing to do with anti-body-based inflammation. BAM is strictly due to the irritation caused by excessive bile flow from the liver. Normally, unused bile is reabsorbed in the terminal ileum and recycled. If too much bile remains unabsorbed, then when it reaches the colon. it tends to cause diarrhea.

I'm guessing that what appears to be gallstones is something else,if you don't have a gallbladder. Didn't your doctor prescribe colestyramine in 2009, when your gallbladder was removed? if gluten stopped the diarrhea then, either you already had microscopic colitis or celiac disease, or the excess bile flow due to the gallbladder surgery, triggered your microscopic colitis development.

Tex

[tex]

Those biopsy results from 2019 were faulty. If you had mucus, at the time, then you had inflammation, indicating that you had an IBD, meaning that you probably had microscopic colitis at the time of that colonoscopy. You probably have more food sensitivities than just gluten, and you need to get them all out of your diet, if you haven't already done so. If you're not sure, and you don't want to cut any foods out that are not a problem, the tests at EnterroLab will tell you what foods are causing you to react. If avoiding them (along with gluten) does not bring remission after a few weeks, then it's time to try higher doses of cholestyramine.

Tex