Question about Bile Acid

[christinafriberg]

A little bit of my history, I'm 4 years in to this CC journey and will be 73 in a couple of days. I worked on methylation cycle in 2017 and had 10 months of remission in 2018. I was able to expand my diet and gained 10lbs which I sorely needed. I have been in a flare
most of this year. My diet is limited to turkey, lamb, carrots, sweet potato, coconut and olive oil. 1/2 cup of coffee a day, my treat!

I seemed to have plateaued this month with 2 to 5 WD a day and, most disappointing, have lost 6 of the 10lbs I gained in '18.

I've been following the threads about Cholestyramine and cortisol/Budesonide. My question is does it appear that I have developed
Bile Acid malabsorbtion? Or does my situation look more like Mast Cell Degranulation?

Thanks-Christina

[tex]

Hi Christina,

Here are my impressions. A more in-depth analysis would be necessary to be able to make a more definitive determination, but my initial thoughts are that unless you are showing some signs of mast cell reactions within 10 or 15 minutes of beginning a meal, or a rash or hives 1/2 to 3/4 day afterward, mast cell degranulation is probably not a significant problem. The initial reactions I'm referring to are common allergy symptoms such as suddenly developing a runny nose, or watery eyes, a facial flush, throat congestion, or a heart-rate increase of more than 10 %. These are all indicators of mast cell degranulation. Symptoms such as a rash or hives may occur promptly, or up to a day afterward.

Speaking from experience (this happened to me), after living with MC for 5 or 6 years (or so), I began to run out of vitamins, such as vitamin D, B-12 (and maybe some other B vitamins), and I slowly ran out of magnesium, even though I was taking vitamin D and a magnesium supplement every day (I was taking the wrong brand and not enough). In my case, I didn't necessarily develop diarrhea, but running low on vitamin D and especially magnesium, can really throw a monkey wrench into the operation of the immune system, and without a properly-functioning immune system, it's virtually impossible for any serious healing to occur.

I've never needed to use cholestyramine myself, so I have no personal experience with it. But if you've read Understanding Microscopic Colitis, you know that in difficult cases, when a treatment plan that should work (or used to work), doesn't, it may be time to try cholestyramine. It's true that budesonide helps with bile acid reabsorption to some extent, but cholestyramine is much more effective at taking bile acid out of circulation so that it becomes unable to promote diarrhea. There's little risk involved when cholestyramine is used correctly, and the potential benefits can be huge in some cases.

I hope this helps.

Tex

[christinafriberg]

Thanks Tex, I so appreciate your insights! It's good to eliminate Mast Cell Issues, I don't have any of those symptoms.
I get 500 MG of Mag and 4000 Iu's of Vitamin D daily, so I think I'm good there. I have your first book which was very helpful.
It must be time to try the Cholestyramine.

I hope your health is good, you have helped so many people here, so many of us have benefited from your experience and expertise.
Many thanks-Christina

p.s.I have a new email friend with MC, a retired MD related by marriage referred her to me. I've told her about the website and encouraged her to join soon.

[tex]

Cholestyramine requires a prescription. To maximize the chances that cholestyramine will help, be sure to ask your doctor to specify the Sandoz brand, as it seems to work the best (by far) for the most people. Definitely avoid the Lite version, and start slowly (1 packet or the equivalent per day), and increase the dose until you find a dose that works best for you. Severe cramps or constipation usually means that you need to reduce the dose. Many members get good results with 2 packets per day (or the equivalent), but a few need more. One member finds that she has to have 8 packets per day in order to maintain good control.

I hope the treatment works for you.

Thanks, I'm doing well. My health is probably better than I deserve at my age.

Tex

[leeblack]

Cholestyramine might be the little extra help you need. 3 notes though. I tried the tablet form and it did not help (or not much) but I was near rock bottom at the time. There is a 'sugar free' version that has artificial sweetener - I would say no to that, too.

That leaves powder. I can't gag that down, so I put it in capsules. I used size 00 first, but it takes much longer than if you can swallow 000 size. If that's what you decide to do, there are 2 types, so beware of your sensitivities. Good luck

[christinafriberg]

Tex good to hear you are doing well! Thanks for the additional info on Cholestyramine.

Lee-thanks for that bit about using capsules, I probably wouldn't have thought of that. I think I read a thread about you using a compounding pharmacy.
I do too, very sensitive to capsules from bovine and porcine sources.

[HockeyMom]

I'm the member that Tex mentioned that needs 8 packets a day!!! I can't say that I love the consistency of the powder in water, but my life was so bad before the cholestyramine that if you told me that eating 8 pieces of purple dog poop per day was what I needed, I would do it. And let me tell you, 4 packets 2x a day is pretty gritty unless you are willing to drink 2 glasses of water with it (which I'm not!). The instructions on the box says you can mix it in food also-so like applesauce or smoothies might be an option instead of just water.

I sorta disagree with Tex on the ramping up on the stuff. I would start with 1 packet twice a day and if you aren't noticing any improvement I would double that the next week. My problem was reading that most people need 2 packets a day. Well, that helped some but just enough to give me some hope. I fiddled with dosage for years and eventually just went to 8 when 6 wasn't consistently cutting it. OK, I'm some sort of outlier freak!!! But it works. It's what I need, and I'm not some 400# man! I weigh 120# (3# under my NORMAL weight). I do take supplemental fat soluble vitamins 3x/week. I do mag lotion daily. I did take the Thorne Methyl Guard B vitamins for awhile (per recs here figuring I needed them), but stopped when 2 different docs in 2 different states using 2 different labs told me I was high on B12 or whatever. Not sure what that means, but OK.

I will mention that when life settled down, I cut back on the Betaine HCl and the digestive enzymes. The Betaine was because I was sorta getting the burning thing going on, so I slowly cut back to nothing. I've started taking one digestive enzyme and one Betaine HCl per meal again as it seems to make the consistency/look of my poop more normal. Let me clarify that...I take a Betaine HCl if I'm eating protein. If its just a salad with no protein then I skip the stomach acid!! My take on this is that I've done ALOT of healing but still need a little support with regard to stomach acid and digestive enzymes!!! Those are easy though.

I really don't have dietary restrictions any longer. I do gluten but don't live on it. Remember, my Enterolab testing said I reacted to EVERYTHING AT a 2+ level with rice at a 3+. NOTHING was 0 or 1..... Well, now that things have healed up, I can eat again. I remember reading a post from Polly years ago saying her last colonoscopy didn't show any MC any longer. I bet mine would be better now also!!! But I had my last one in 2017 and don't plan on another for awhile!!

I would have never guessed I had bile acid issues. I mean, who has heard of that? And GI docs at the time (now even I think), weren't too helpful!

Laine

[DD]

I've just started cholestyramine...I'm giving it a try. I'm into day two and notice mucus in my stool. Anyone else have this? I'm not excited about the stories I've heard that it damages teeth and thins hair... Anyway, my question is, does this product help heal the intestine or does it just help with symptoms? My other question is, are people with CC able to get off of it or is it required indefinitely? Thanks everyone, you'll have been so helpful!

[tex]

Hi,

I haven't used it personally, but after extensive research, and reading the posts of other members here over the years, my opinion is that It does not suppress inflammation directly, but it can do that indirectly. BAM is often the cause of diarrhea that will not respond to normal treatment methods. According to published research, about 40 % of such cases are doe to BAM. If you have BAM (and are carefully following the diet), experimenting until you find the right dose of cholestyramine can bring remission. Most patients do have to take it for a long time (often years), but some are able to discontinue it after their digestive system has completely healed (which usually takes 3–5 years).

Cholestyramine is not much fun to use (because of the taste and timing requirements), but if it works, it beats the heck out of continuing to react. And it carries very little risk of side effects, as long as you're careful about when you take it in relation to meals, supplements, and any other medications. If you're not careful with the timing, you will eventually become deficient in various vitamins and minerals. Also, it will lower your cholesterol level, but that's not usually a negative issue.

Tex

[HockeyMom]

My hair is fine! And I basically suck down more liquid after I do my 2x/day dosing...so there isnt anything leftover in my mouth as far as I'm concerned. I suppose you could brush and floss after taking it...
Maybe I was so bad that I was willing to tolerate whatever to be functional again. If my MC was just a minor annoyance maybe dealing with cholestyramine wouldn't be worth it..

[dolson]

This medication is absolutely wonderful. Yes, I've had my gall bladder removed but never had problems. MC and I think my bile acids began to cause a problem. I got worse and was losing weight.WD was beyond bad! Some days I take one packet and some days two. I really think it helps in the healing process. I can't say enough about this wonderful medication. Plus it helps to lower your cholesterol. Yea! Two thumbs up on this medication. I got some of my life back. Now on the diabetes.That's another topic for another day. Dorothy

[dolson]

About losing your hair and problems with teeth is a misnomer. If you got that from Google, don't trust em. I no longer use Google. Don't trust em! My hair has thickened since I've been on this wonderful medication. No problems with my teeth, and I like the taste! Dorothy

[christinafriberg]

A check in about Cholestyramine, I've been on it 5 weeks, had normal BM's from day 4. Titrated down to a half packet by day 7, which works just fine. I may try reducing to 1/2 packet every other day. It is an amazing med! Wish I'd had tried it sooner! My only concern is that I'm continuing to lose weight, I was hoping to put on a few pounds, maybe 10. Anyone else had this reaction?

Thank you again Tex for encouraging me to try it!!

[tex]

You're very welcome. Glad it worked.

Regarding the loss of weight— are you taking it far enough away from meals? It will sequester any fat that's been emulsified by the bile as it sequesters the bile, resulting in the loss of that fat. It will also sequester various nutrients. Are you eating enough calories to support weight gain? You will naturally lose weight on a low-calorie diet.

Tex

[christinafriberg]

Good Morning Tex-yes to both your questions. I take the cholestyramine at lunch, meds and supplements at breakfast and dinner.
So lunch is at least 4 hours away from all sups and meds. I do eat quite a lot. Three meals of 5-6 oz of protein and a good serving of
veggies. I've been eating rice the last few days but that hasn't helped and long term I'm concerned about the arsenic in rice. Eating more fat doesn't seem to be the answer either, I'd have to up the cholestyramine.

Thank you for being there to address all our concerns, very much appreciate!