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Anyone have experience taking Cholestyramine?

 
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Anita

United States

Joined: 29 Mar 2016

Posts: 1
User's local time:
2017 Oct 23 - 2:24 PM


Food Intolerances : Gluten

PostPosted: Wed Mar 30, 2016 8:20 pm    Post subject: Anyone have experience taking Cholestyramine? Reply with quote

Hi all,

I'm new to the forum. Diagnosed with celiac disease and microscopic colitis in December 2015. Started on a gluten-free diet just before Christmas and think I've done a pretty good job eliminating all sources of gluten from my diet and my life. Had a blood test to measure the antibodies this week to see whether the antibody levels are closer to normal, results are not back yet.

Initially, my gastroenterologist put me on a regimen of Entocort for 8 weeks, starting at 9 mg/day for four weeks, then 6 mg/day for two weeks, then 3 mg/day for two weeks. While I was on the 9 mg/day of Entocort I felt fantastic, so great that I didn't realize how bad I had been feeling for so many years. My extreme back and hip pain that were agonizing and causing me sleepless nights and terrible mornings simply disappeared. I remembered how it felt to be normal. Diarrhea completely gone.

But before I was finished with the 3 mg/day weeks the diarrhea started up again like nothing ever happened. I'm pretty sure I don't have other food intolerances and can't find any triggering food that makes it worse or times when it is less/better.

So the back and hip pain has also returned with the diarrhea and I guess that means the two are obviously related which I never understood before. The gastro doc wants me to try Cholestyramine powder for a week to see if it helps my symptoms before he starts me back up again on a second (and longer) regimen of the Entocort.

The literature that came with the Cholestyramine powder says it treats high cholesterol !!! How will this help reduce or eliminate the diarrhea? I don't get it.

Anyone out there have experience with it and most importantly, did it help you??

Thanks so much !!!!!
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30603
User's local time:
2017 Oct 23 - 4:24 PM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Mar 30, 2016 9:41 pm    Post subject: Reply with quote

Hi Anita,

Welcome to our Internet family. You will find that while the blood tests may show a fast response, they have such poor sensitivity that they are pretty much unreliable for detecting the full extent of the problem. Stool tests to check for Iga antibodies to gliadin are several orders of magnitude more sensitive. And they can also be used to detect other food sensitivities that most of us have to avoid in order to control our symptoms.

Your experience with budesonide (Entocort) is typical. It can mask the symptoms for many patients, but as soon as the treatment is ended the symptoms return because certain foods in our diet continue to generate antibodies that perpetuate the inflammation in our intestines.

Anita wrote:
I'm pretty sure I don't have other food intolerances and can't find any triggering food that makes it worse or times when it is less/better.


That's exactly how most new members feel when they arrive here, and that's why they are unable to control their symptoms. And that's exactly how I felt before I removed all of the gluten from my diet and allowed my gut to heal for a while until I could track down the other food sensitivities. Food sensitivities are not usually obvious, and they can be very tricky to track down. Your inability to notice any problems from certain foods (such as dairy and soy) lead me to suspect that either you still have traces of gluten in your diet due to cross-contamination problems, or you just need more healing time. Traces of gluten in the diet can trump everything else.

Unfortunately most gastroenterologists still haven't figured out that once MC is triggered, food sensitivities that are also simultaneously triggered generate new inflammation with every meal unless we remove every trace of those foods from our diet. The arthritis-like symptoms are caused by the increased intestinal permeability (leaky gut) that accompanies both MC and celiac disease.

In a few cases Bile Acid Malabsorption (BAM) can be a source of persistent diarrhea. In those cases, a bile acid sequestrant such as Cholestyramine may be sufficient to bring remission. But if the only food that you are currently avoiding is gluten, then it is unlikely that Cholestyramine will resolve your symptoms, though it might help for a while.

Here's the low-down on Cholestyramine. It was FDA approved to treat high cholesterol. Treating BAM (or MC) is an off-label use. When BAM occurs, bile that should have normally been absorbed in the terminal ileum continues on and passes into the colon where it causes diarrhea. By resolving BAM, Cholestyramine sometimes resolves chronic diarrhea (due to BAM).

If you will go to the Main Message Board (forum) you will find at least several recent or current discussions about the use of Cholestyramine. For example:

Cholestyramine

Relapse - Cholestyramine helped! - Restaurants - Denial

Cholestyramine ending and Budesonide beginning

And here is a thread from a few months ago that contains a lot of responses (8 pages long). Incidentally, the author of that topic, Polly, is an MD who has had MC for roughly 20 years.

More on Bile Acids (an important piece of the MC puzzle?)

If you will post on the Main Message Board you will get many more responses because that's where most members hang out most of the time.

Again, welcome aboard, and please feel free to ask anything.

Tex
_________________
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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karedor1

Australia

Joined: 26 Apr 2014

Posts: 2
User's local time:
2017 Oct 23 - 4:24 PM


Food Intolerances : Lactose, corn
Location: Australia

PostPosted: Fri Jul 21, 2017 6:10 am    Post subject: Reply with quote

Yes I was put on it as Gastrostop / Imodium caused more problems for my LC. I have currently stopped taking it as when I relapsed in April 2017 my gastroenterologist in May told me to stop it as it was making me very nauseated plus I recommenced Budesonide.
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brandy
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 16 Oct 2011

Posts: 1934
User's local time:
2017 Oct 23 - 4:24 PM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Fri Jul 21, 2017 3:24 pm    Post subject: Reply with quote

Hi Anita,

Welcome to the board. We recommend Tex's book. There is a link in the right hand corner. It is the only book on microscopic colits.

Eight weeks is not long enough for budesonide (Entocort). Even Astra Zeneca says 12 weeks. Members who use budesonide find 4, 5 or 6 months works better on budesonide to settle things down and then get off with a long slow taper.

Eight week stint on budesonide equals almost certain relapse.

If the budesonide worked that well for you is it an option to go back on for 5 or 6 months until things settle down and you can do a slow taper. Mayo clinic says in their studies a lot of folks need 6 months or so. On the forum we find a long slow taper really helps with reflare. I saw your doc had you on 1 pill for 2 weeks. That is not long enough. At the low dose generally something like 1 pill per day for 4-6 weeks, 1 pill every other day for 4 weeks or so, 1 pill every third day for another 3 or 4 weeks. Then start antihistamine when getting ready to get off of budesonide.

If you retry budesonide we recommend an antihistamine for about a week when you are getting off. This helps prevent reflare.

I've used cholestyramine. I think Polly (an MD who also has MC) recommends a 4 or 6 week trial. It also works but I had side effects so went with diet changes alone.

I found both drugs worked but I had side effects on both.

The cholestyramine is pretty benign, i.e. less strong than budesonide and I also liked the way I could take very small doses of the cholestryamine for effectiveness.

Long term.....diet is key.
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