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MICROSCOPIC COLITIS SUPPORT
Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues

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JulieHaggy

United States

Joined: 24 Aug 2017
Posts: 22
User's local time:
2017 Nov 22 - 5:41 AM


Food Intolerances : dairy,soy,corn,eggs,yeast,almonds

PostPosted: Tue Sep 26, 2017 12:24 pm    Post subject: Reply with quote

I have just started cholestryamine.....one scoop each day for two days. It just seems to be making me have more D. If it's going to help, will it do so right away or do I need to keep taking it for a few more days. My doc wanted me to take it 4 times a day but I'm afraid to do that unless I know for sure it's not going to make me worse.

Thanks!
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HockeyMom
Adélie Penguin
Adélie Penguin


Joined: 01 Oct 2011

Posts: 190
User's local time:
2017 Nov 22 - 3:41 AM


Food Intolerances : Gluten, dairy, soy, rice, chicken, almond, etc/etc/etc/etc...
Location: Colorado

PostPosted: Tue Sep 26, 2017 12:47 pm    Post subject: Reply with quote

Well, I'm not sure about worse, or how much worse you can get!!! When I started it a year ago the PCP said 1 packet (scoop) twice a day. I worked up from there and started feeling less gurgly after like 2 weeks. I've been up and down with the stuff for a year obviously.. I currently am taking 5-6 packets a day to see if an increased dosage helps. I truly went back and forth between 2-3 for months..and probably need to be on 3-4??? Who knows. I do know that when I stopped it totally for 10 days about a month ago, my guts went crazy...I didn't know if I needed the stuff or not. Obviously I do.

Long story short, I'm getting better and things are solidifying. Not great yet, but not just brown liquid diarrhea anymore and things have form. I would tell you that you probably need to do 3-4 packets a day...what I felt was that the gurgling and such started getting better before anything actually started to solidify for me. I haven't gone back to work yet (all labs/tests from PCP are negative for everything of course, lipase is normal..), but I have gotten out of the house and will go shopping today.

I would say give it some time...up the dosage if needed.

Laine
_________________
"Do what you can, with what you have, where you are"-Teddy Roosevelt
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JulieHaggy

United States

Joined: 24 Aug 2017
Posts: 22
User's local time:
2017 Nov 22 - 5:41 AM


Food Intolerances : dairy,soy,corn,eggs,yeast,almonds

PostPosted: Tue Sep 26, 2017 5:47 pm    Post subject: Reply with quote

Thank you! I think I will continue for a while and increase the dose. Fingers crossed!
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Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5165
User's local time:
2017 Nov 22 - 5:41 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Wed Sep 27, 2017 8:10 am    Post subject: Reply with quote

Hi Julie,

I may have been the first here to have great success with cholestyramine! It has been a lifesaver!

It often takes weeks (at least 4 weeks in some cases) to see results - you won't see much change in a few days, in most cases. When starting, you often need a higher dose (even as much as 2-3 packets 2 to 3 times a day) - you can taper it easily when you begin to see results. I agree with your doc about taking more initially.

It is a very safe med. and is not systemically absorbed. Definitely worth a full trial, IMHO.

Good luck. Feel free to PM me if you wish to discuss further.

Polly
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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JulieHaggy

United States

Joined: 24 Aug 2017
Posts: 22
User's local time:
2017 Nov 22 - 5:41 AM


Food Intolerances : dairy,soy,corn,eggs,yeast,almonds

PostPosted: Wed Sep 27, 2017 4:18 pm    Post subject: cholestryamine Reply with quote

I tried to PM you but not sure I did it correctly. Did you receive it? I have trouble navigating this website :(
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30725
User's local time:
2017 Nov 22 - 4:41 AM


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 Sep 27, 2017 5:41 pm    Post subject: Reply with quote

Julie,

To send a PM to Polly, you just need to click on the "pm" button at the bottom of one of her posts, write the message in the window that opens, (and write a subject in the "subject line), and click on the "submit" button below the window.

Tex
_________________
cowboy

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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JulieHaggy

United States

Joined: 24 Aug 2017
Posts: 22
User's local time:
2017 Nov 22 - 5:41 AM


Food Intolerances : dairy,soy,corn,eggs,yeast,almonds

PostPosted: Wed Sep 27, 2017 5:45 pm    Post subject: how to PM Reply with quote

Thanks you! I think I did that so maybe she got it :)
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Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5165
User's local time:
2017 Nov 22 - 5:41 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Thu Sep 28, 2017 8:13 pm    Post subject: Reply with quote

Hmmmm, I have not received a PM. Julie, I will send you a PM and then you can respond to it. Look for it at the top of the Home Page: it should say "you have one new message". Click on that.

Polly
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5165
User's local time:
2017 Nov 22 - 5:41 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Fri Sep 29, 2017 8:25 am    Post subject: Reply with quote

It worked! We are in touch by PM!
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Reverend



Joined: 06 Oct 2017
Posts: 2
User's local time:
2017 Nov 22 - 5:41 AM


Food Intolerances : Processed Sugar with Grain; Wheat, Dairy; Potato with Grain

PostPosted: Mon Oct 16, 2017 3:42 pm    Post subject: Diagnosed August 1, 2017; discontinuedSandoz cholestyramine; Reply with quote

Hello, new friends! I was diagnosed on August 17, 2017; I discontinued Sandoz cholestyramine when I realized it had aspartame; now I am on Cholestipol 2 tablets once a day (1 GM tablet); After seeing the gastro I went to a naturopath and did a simple blood test that revealed a sensitivity to dairy, wheat, potato with grain and grain with processed sugar.

I had been on a vegan diet for about 4 years; did this trigger something? so I was already off dairy; I have now eliminated dairy, gluten, potato and processed sugar. I'm not well, though; nothing I've done has really madea difference so far.

I did order Wayne Persky's book and I am reading it carefully! I have decided to move up my retirement in order to reduce stress - I will be retiring at the end of January!

Blessings to each of you, whatever you faith tradition may be!

Brenda
_________________
Diagnosed with Microscopic Lymphacitic Colitis August 2017; Results from Enterolab reveal Gluten, Oat and Almond sensitivity!
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30725
User's local time:
2017 Nov 22 - 4:41 AM


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: Mon Oct 16, 2017 7:59 pm    Post subject: Reply with quote

Hi,

Welcome to our Internet family. The main problem with a vegan diet (as far as recovering from MC is concerned) is that it is typically high in fiber content. Fiber irritates the colon, especially when it is already inflamed, so too much fiber can prevent remission. Raw vegetables especially are off limits during recovery, due to their propensity to irritate the gut. A significant number of vegans develop MC, but I doubt that the vegan diet raises the risk of developing MC. There's just not enough evidence to conclude that. Another issue with a vegan diet during recovery from MC is that the diet usually relies on soy and legume products for protein, and most of us are soy-sensitive. And someone who is sensitive to soy is usually sensitive to most legumes.

None of the blood tests that are in use are actually capable of accurately detecting food sensitivities that affect the digestive system. The blood tests typically look for IgE or IgG antibodies and those antibodies only relate to skin and respiratory system allergies. Only stool tests looking for IgA antibodies provide accurate and reliable results for food sensitivities, because these antibodies to foods are produced in the gut, and they stay in the gut (or the stool).

You have already been avoiding most of the common food sensitivities. The only common remaining possibilities are egg and soy. Since your diet has probably contained a lot of soy, there's a good chance that soy might be the remaining issue in your recovery diet. But of course I'm only guessing, based on past experience, so I could certainly be wrong.

I hope that some of this is helpful.

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

Tex
_________________
cowboy

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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