Need Cholestyramine Advice

[2810CieloGrande]

I started recovery May 1st after stool test results showed all 15 sensitivities. My primary protein is organic ground turkey. In early July I was showing some signs of healing. These signs were listed in a MC newsletter dated September 2024. My WD was greatly reduced in volume, bits of solid stool appeared regularly, and there was some paste mixed with gas. My WD was golden yellow which I thought might be BAM or just bile, so I checked with Tex, asking about cholestyramine. I found Epic brand with sucrose at Walmart and I started doing 2 doses per day since the box had 60 doses-one month’s worth. From day #2 through day #18 of usage, results were finger sized, 8-10 at a time, usually three times a day. There was no diarrhea at all. I was elated.

Suddenly after 18 days, yellow WD reappeared, mixed with smaller stool. I continued with cholestyramine without a change for a few more days. In the meantime I had an appointment with a new gastroenterologist, who was kind but knew little about

[2810CieloGrande]

(Continued). MC, but recommended I take cholestyramine 3 times a day. I have increased the dosage to 3 times daily, but the result is still the same—more yellow WD. After a few more days, I have stopped the cholestyramine. My questions: 1. What should I do now? 2. Should I just continue eating my turkey meals? 3. Is it a problem that my turkey contains 2 percent rosemary extract as a preservative? 4. Should I add a teaspoon of olive oil, small amounts of avocado, or any salt, or just eat the turkey plain?

At 74 years old, I work hard to avoid feeling devastated by meditating, deep breathing, praying, walking and farm work. What a downer this is!!

Barbara

[Rosie]

I'm sorry to hear that you are struggling. I would be very suspicious of the ground turkey with 2% rosemary extract, as it is extracted with soy oil. It's hard to find ground turkey without rosemary extract. Your best bet in finding it, is check in the frozen meat section of the grocery store. I use the Diestel brand. It comes frozen, and is pure ground turkey. Whole Foods, and some specialty grocery stores carry the brand. You can also order on line and have it shipped to you frozen. Diestal has other turkey products as well, and most of them are additive free. Just check the ingredients. It's more expensive, $11.95/lb. https://diestelturkey.com/#

Good luck, and I hope you can figure out a diet that works for you!

Rosie

[jbrohlr]

I agree with Rosie, Rosemary Extract is very likely a problem. It seems that soy (or it's extracts) is in everything.

John R.

[HockeyMom]

I would up the amount of Cholestyramine. I also avoided ground turkey....you opposed to whole?

Laine

[2810CieloGrande]

Thank you for the Diestel recommendation. I am very grateful for the Forum and all of you generous folks.
Barbara

[2810CieloGrande]

Since my last post, things have deteriorated significantly and I’m at my wits end. I have increased my cholestyramine from 2 per day to 3 but the only change is an increased number of trips to the bathroom. One month ago I was in much better shape, producing small ribbons of stool and some paste. Now, while WD is still somewhat reduced, there is more pressure, gas, yellow fluid, and urgency. I have changed to the recommended ground Diestel turkey with a little salt and olive oil. It seems that my food is digested very quickly and I am hungry again. Should I increase to 4 cholestyramine doses per day? Two doses per day worked well for me a few weeks ago, but no longer does. Why has cholestyramine stopped working? Is it possible that turkey isn’t working for me any more even though my WD level is still reduced from where it was in my early recovery stage? It seems the cholestyramine isn’t working and I’m just excreting it. I’m losing weight and have none to lose. I’m frightened and emotional. I’m very appreciative for all the previous guidance, but I still need help.
Barbara

[tex]

Hello Barbara,

Virtually none of us produce antibodies to turkey, so it's one of the safest foods we can eat. If you're hungry, eat larger helpings, or more frequent meals. And as Laine suggested, try increasing your cholestyramine dose. Unless it causes constipation, more shouid be safe.

Tex

[jbrohlr]

Barbara, what are you eating besides turkey? Also, what kind of medication/supplements are you taking? Sometimes an offending substance can sneak in in places you don't suspect.

John R.

[2810CieloGrande]

Hi John,


Thank you for question.

I eat Diestel brand organic turkey with kosher salt and a tsp of mostly organic olive oil brands.
Supplements: Drs Best Mg, D3, full active B12 & folate, Calcium Bone Maker, Thorne Methyl Guard. 50mg Thyroid meds. I drink 6-8 oz org decaf TJs Coffee, green tea steeped from tea leaves removed from the tea bag. I make the electrolyte drink from the Forum’s file without sugar. I wear Blue Lizard sunblock daily {zinc oxide& titanium oxide. I live in Southern NM in the desert.

On occasion I have consumed a couple of tsp of Organic, sunflower seed butter unsalted, unsweetened, gluten free. On the label it adds no peanuts, no tree nuts, no dairy, no eggs, no sesame,no shellfish, no soy. 8 grams protein and 3 grams fiber.
I haven’t had sun butter in two days since upping the Cholestyramine. This is my current list.

Just for a comparison here is a list of foods I was eating July 13th when I had my very first dose of Cholestyramine and the two and a half weeks I had great success with it. [keeping a detailed journal was excellent advice, TEX!]

I took two Cholestyramine a day. 60 doses in a box I figured was a month’s worth. Novice.
I was eating a tsp of sun butter frequently. Once in a while yam or avocado with a turkey serving. My other food was org pecan halves. I read the Chef’s list in the back of Wayne’s MC book which said I could eat nuts as long as I did not have a sensitivity to it. I stopped eating the pecans when the Cholestyramine stopped working. That detailed in an earlier post

Right now I’m going to wait a couple of weeks to allow the four Cholestyramine dose to succeed.

Thank you John and TEX
Looking forward to your feedback. With great gratitude, Barbara

[tex]

It looks like you're on track.

Tex

[2810CieloGrande]

John, I should have given you the vitamin dosage I consume.
4,sometimes 5 100mg Mg, two in AM , two in PM I have leg and foot cramps. I also soak my feet in epsom salts every evening which calms my feet so I can sleep. Frequently, I use topical Mg oil on my legs and feet or other muscles.
I take 2 5000 IU D3 since I protect myself from the sun.
And 2 Fully active B12 1500 mcg and Fully active Folate 400 mcg.
The Calcium Bone Maker is for my osteopenia and osteoporosis. Three capsules are recommended. I only take two. It has lots of vitamins and minerals. A problem?

Is it possible the Mg is my culprit? I’m still having too much WD.

[jbrohlr]

That amount of Mg would turn me into a firehose, but that's me - I know several people on this site take 500mg a day and over with no problems.

Your food choices look pretty good (to me). The only thing I saw that would make trouble for me was the tea. I have trouble with coffee as well, but I have a histamine issue, so take my declarations with a grain of salt.

I looked up the inactive ingredients on your brand of sunscreen and the only thing I saw that might be a problem was tocopherol. Tocopherol is extracted from soy in many cases, but I have no idea if a soy extract would permeate through skin. There was a large list of inactive ingredients otherwise (often a warning sign), many of them went over my head. Maybe Gabes can chime in on what she uses - I believe she is outside a lot in the Australian sun.

There's a good section on this site called "Selecting Safe Cosmetics", I noticed that there a several threads that discuss (or mention) sunscreen.

Try not to get too discouraged Barbara. As Tex already pointed out, for as long as you have had MC you're going to have a long row to hoe. I've been at it for a little over 4 years and I'm considerably better (a bad day now was a good day 3 years ago), but I'm still on thin ice, and I'm still learning (sometimes the hard way).

John R.

[2810CieloGrande]

Hi John
Thank you for looking into Blue Lizard ingredients. I just wear it on my face when I am outside and wash it off when I am inside. I live in 100 SPF sun protection clothing from Solumbra because of skin cancers. I am looking for other options. I did check the cosmetics section, however the link did not work. (No problem)
I have downloaded the CHAT GBT APP and it’s quite helpful. I’m learning the ingredients, the good ones and the toxic ones. Tex recommended Hugo Naturals. I have a phone number for them as I am looking for shampoo too.


I like your saying “a bad day now was a good day 3 years ago”.
I’m slowly moving forward. I’ve reduced my coffee and drastically reduced the green tea and eating more turkey.


I HOPE I can still think remission can be a goal. Wayne wrote an excellent Bulletin titled “Aging”. My husband and I talk about this topic nearly every day and it can feel daunting.

Thanks to you, Tex, and others for caring.
By the way, CHATGBT knows more about MC than my gastro. Not enough though!

Barbara

[HockeyMom]

Hey Barbara-

A good way to know if ANY dosage of cholestyramine is helping your cause it to just STOP IT!!! I'm a slow learner and did this twice-things definitely went downhill!! Please don't get hung up on what a normal DOSAGE is. I did. I got over that. I'm convinced I'm some sort of circus freak..I need between 8-9 packets a day (split up am/pm) to keep things going the right direction. And I believe that things don't change that quickly-you need to just slow things down and manage your expectations!!! I'm also a firm believer (sorry to anyone else on this board that disagrees with me...I've been on this stuff for 9 years now and have my own opinions and experiences..) that you can crank up the dosage quickly-if you can handle it. Me, I just get kinda bloaty. Not a big deal.

I also think you are taking ALOT of oral magnesium at this stage of the game. I didn't trust orals with my gut. I SLATHERED myself with mag lotion (did oil for awhile-just kinda messy) 3x a day on LARGE sections of my body. Only after I got better control did I start adding oral mag. And then it was Remag which I seemed to tolerate. I also did very frequent baths with lots of salts-

I didn't trust any ground turkey. I bought chunks of turkey (breasts, thighs, you name it) that didn't seem to have bad preservatives and just cooked those up. Huge X Files fan here....TRUST NO ONE!!! I also pressure cooked alot of meat and veggies. Easy, quick and alot of food for not much clean up!! I also did the sunflower seed butter as I believe it is high in magnesium as I wasn't doing any nuts-

My 2Cents worth!!

Laine