Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Whose Tried Cholestyramine- Questran Powder?


Judyin Philly

Recommended Posts

Judyin Philly Enthusiast

I know Debmidge has found this helped. Thanks for you emails Deb.

I've found good results being gluten-free for past 2 1/2 years and now sf, df

6 months and the low oxalate for 2 months I guess. I still had dumping

and 'd' but just tired this powder the last 3 days and it seems to be helping.

I still have my gallbladder and don't have g/b symptoms & my cholesterol

levels are great. Many with Habba have their gallbladders and some do not

and the power is to help both folks.

Heard about this Habba Syndrom on mystery dx on the health channel.

Thanks Patti.

I would so appreciate anyone sharing info on this condition or

connection between celiac- low oxalates-- and excess bile from the

gallbladder dumping into the intestine.

I've put this question up on the oxalate thread but thought maybe others might see it here

Thanks

Judy


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



happygirl Collaborator

Judy: I'll PM you about this.

Judyin Philly Enthusiast

will look forward to it Laura

I started it 2 days ago but it said it also helps with the oxalate in the bladder and that is cropping up now that the 'd' is gone.

hummmmmmmmmmmmmmmm :blink:

Rachel--24 Collaborator

Judy,

I'm pretty sure Carla was using it....not sure if she's still on it. It can be used as a toxin binder (absorbs toxins)....lots of people with Lyme and other infections use it to help with getting rid of the toxins that circulate.

Judyin Philly Enthusiast
Judy,

I'm pretty sure Carla was using it....not sure if she's still on it. It can be used as a toxin binder (absorbs toxins)....lots of people with Lyme and other infections use it to help with getting rid of the toxins that circulate.

Thanks Rachel...........guess it has lots of uses. This is a good thing for me.

appreciate your comments.

judy

dlp252 Apprentice

It's good for all kinds of toxins...I've read that it's good for people exposed to mold as well. I've been planning to talk to my doctor when I see him in December about this specifically for flushing out the toxins from the lyme and mold toxicity in my case.

Judyin Philly Enthusiast
It's good for all kinds of toxins...I've read that it's good for people exposed to mold as well. I've been planning to talk to my doctor when I see him in December about this specifically for flushing out the toxins from the lyme and mold toxicity in my case.

thanks Donna.

Well this is great news too.

We have a mold issue and of course the lyme is :blink: always :blink: a worry BUT........THIS SEEMS TO WORK FOR ALOT OF 'DUMPING' ISSUES.........

YA...HOOO............ME THINKS ME MIGHT BE ON TO SOMETHING HERE.

I KNOW I'M DUMPING BLADDER OXALATES FOR ..........SURE B)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Judyin Philly Enthusiast

Please forgive me for 'bumping' this up.

With bad weather around the US I was in hopes that maybe someone might be on that might be able to help me with this.

Spoke with Laura yesterday and she was so helpful. THANKS LAURA. :P

JUST thought with a group this large someone might have some info since this drug is used for de toxing as well.

thanks

Judy

dlp252 Apprentice

I know CarlaB has taken this, so hopefully she'll see this, or maybe you can PM her.

CarlaB Enthusiast
Judy,

I'm pretty sure Carla was using it....not sure if she's still on it. It can be used as a toxin binder (absorbs toxins)....lots of people with Lyme and other infections use it to help with getting rid of the toxins that circulate.

This is the first time I have seen this thread ... sorry. :) If you ever want to be sure I see a specific post, please mention it in the OMG thread or send me a PM. :)

I was taking this because I had constant diarrhea from unknown causes for months. One of the side effects of the drug is constipation .... though I had diarrhea the whole time I was taking it.

It was used on me to bind toxins (bile) in the intestines so that the toxins would not be reabsorbed. I used this in conjunction with coffee enemas, which force the gall bladder to release bile.

I have been doing so many things to kill bacteria, detoxify, etc. that I can't tell you how much this helped, but I really think it did help.

I stopped taking it when my GI issues were resolved and now take chlorella to bind toxins.

In the end, my GI issues were caused by bartonella (a coinfection of Lyme Disease), bacterial dysbiosis, and a tapeworm ( :o ).

happygirl Collaborator
Spoke with Laura yesterday and she was so helpful. THANKS LAURA. :P

Not sure how much good information I was actually able to give you, but it sure was a good excuse to chat with you!!!!! I sure hope this new med helps you.

  • 1 month later...
Judyin Philly Enthusiast
It's good for all kinds of toxins...I've read that it's good for people exposed to mold as well. I've been planning to talk to my doctor when I see him in December about this specifically for flushing out the toxins from the lyme and mold toxicity in my case.

Donna

did you ever ck this out with your GI?

I'm pretty sure it is doing 'AL LOT OF DETOXING' IN ME ESP IN THE STOOLS AND URINE.

JUDY

Judyin Philly Enthusiast
It was used on me to bind toxins (bile) in the intestines so that the toxins would not be reabsorbed. I used this in conjunction with coffee enemas, which force the gall bladder to release bile.

I have been doing so many things to kill bacteria, detoxify, etc. that I can't tell you how much this helped, but I really think it did help.

I stopped taking it when my GI issues were resolved and now take chlorella to bind toxins.

In the end, my GI issues were caused by bartonella (a coinfection of Lyme Disease), bacterial dysbiosis, and a tapeworm ( :o ).

SO IT DID HELP YOU RIGHT?

I READ ABOUT YOUR TAPE WORM............. :blink: DID IT ALL PASS CARLA?

CarlaB Enthusiast

I really can't say whether it helped or not .... I'm not on it anymore and I'm not sure if it helped.

Yeah, tapeworm, yuck! I don't know if it's all gone, or not!! I'm going to take the Humaworm again .... you're supposed to wait 90 days between treatments. I figure it's a good idea to be sure. Their website says that bad infections may need more than one treatment .... I don't know if they consider a tapeworm to be a bad infection, but I DO!!!

Judyin Philly Enthusiast
I really can't say whether it helped or not .... I'm not on it anymore and I'm not sure if it helped.

Yeah, tapeworm, yuck! I don't know if it's all gone, or not!! I'm going to take the Humaworm again .... you're supposed to wait 90 days between treatments. I figure it's a good idea to be sure. Their website says that bad infections may need more than one treatment .... I don't know if they consider a tapeworm to be a bad infection, but I DO!!!

i learned on the OMG that dumping or detox could be seen in sandy, grainy, black flakes in the stools and i could see shiny chrystal like thinkgs floating on top so guessing dextoxing.

also...........yep....................that tapeworm, what ever name it goes by is BAD NEWS :ph34r:

THANKS FOR ANSWERING.

HOPE YOUR FEELING BETTER AFTER YOUR CHRISTMAS FLU OR WHAT EVER YOU HAD.

JUDY

dlp252 Apprentice
Donna

did you ever ck this out with your GI?

I'm pretty sure it is doing 'AL LOT OF DETOXING' IN ME ESP IN THE STOOLS AND URINE.

JUDY

I did ask my doctor. He won't give it to me. Because I am mold toxic, he wants me to fix that problem not rely on medication. :(

CarlaB Enthusiast

Thanks, I had a cold .... now my monthly lyme flare is here, so I will feel better in a day or two. :)

Judyin Philly Enthusiast
I did ask my doctor. He won't give it to me. Because I am mold toxic, he wants me to fix that problem not rely on medication. :(

well i have to say i agree with this.

Since my Internist and GI are at a loss I'm just giving it a try and wish i knew what the cause was tool. excess bile salts they said. oh well.

thanks for letting me know Donna.

j

dlp252 Apprentice

Yeah, I have to say I don't disagree with him, but really just wanted it to tide me over until I COULD fix the problem, lol. Oh well, this just puts a fire under me to get it fixed.

Judyin Philly Enthusiast
Yeah, I have to say I don't disagree with him, but really just wanted it to tide me over until I COULD fix the problem, lol. Oh well, this just puts a fire under me to get it fixed.

Hi Donna

I so agree............ I always want to know 'what the cause is' and not put a bandaid on something and want to get to the root cause.

BUT it seems when my 'd' is so bad i can't even think straight to figure anything out :ph34r:

At least now i can function...........still off all the foods listed previously.........so limited foods but i really am feeling better and thus hopful.

i have a whole printed thing from the IBS forum from people who went to see Habba

and those the powder helped. I can send in a email to you if you want.

i think i have mold issues too. didn't you have to get rid of rugs etc. in your apt?

gosh it's been so long since i read about this issue with you on the omg thread

let's keep in touch ok?

Judy

dlp252 Apprentice

Sure Judy...I'd love to see the info you got!

Yes, I have to replace the carpet and my doctor won't really begin aggressive treatments with me until I do that. He said as long as I'm exposed to the mold, I won't improve much beyond what I have. I have to agree with that too, lol, but I'm anxious to get started on it. I have seen improvement too, just supporting my body with the missing nutrients, etc. has helped.

I'm so happy you are seeing improvement!!!! That is just fantastic! You had me worried for a while there!

Judyin Philly Enthusiast
Sure Judy...I'd love to see the info you got!

Yes, I have to replace the carpet and my doctor won't really begin aggressive treatments with me until I do that. He said as long as I'm exposed to the mold, I won't improve much beyond what I have. I have to agree with that too, lol, but I'm anxious to get started on it. I have seen improvement too, just supporting my body with the missing nutrients, etc. has helped.

I'm so happy you are seeing improvement!!!! That is just fantastic! You had me worried for a while there!

Hi Donna

If you pm me you personal address........think i had it at one time but not there now....i'll send to you as not sure i can put it all in a pm here......long but since it's a print out will be easier to read.

Ha you were worried.........I was getting scared. s...less......... :lol:B) cause that's all i was doing. :lol:

pretty sure with my food diary etc it was 'dumping' so if i can understand it better i cope better.

Also in the middle of this Laura. (happygirl) and i talked and she was so encouraging. sometimes it's all we need to help get us through. Plus lucky to have a few phone friends......who are always there for me and boy it sure helps keep us going.

good luck to you kido.

heard you saw Rachel sleeping at the dr's...............and you met up with carla...you sure get around girl... :lol:

Judy....just let me know as it's ready to hit the 'send' button ;)

dlp252 Apprentice
Judy....just let me know as it's ready to hit the 'send' button ;)

Just sent you a PM.

Haven't met up with Carla yet...just Tom and Claire and then Rachel so far. :P

  • 2 weeks later...
bigfootme Newbie

A GI specialist prescribed Cholestyramine for me after having my gallbladder removed. I was having uncontrollable D so bad that if I were going to work at 3pm I could not eat a bite of food in the am at all or I would never make it to work. I couldn't eat until I got home late at night so I could be near the bathroom.

I was unable to eat out at any restaurant as often I had to hit the restroom before I could even finish or pay for the meal, but that was always better than when I didn't have to hit the restroom until I got in the car and made it a couple of miles down the road.

The medicine made it to where I can eat out and at least have the time to make it to the restroom. I have to say that for it.

I have learned that I am allergic to all but 7 of the foods that they tested for and all of the plants, molds and creatures, particularly grasses, which of course includes rice, wheat, rye, barley and oats and I suspect that I have Celiac's disease, but doctor is digging his heels in about testing, wanting it to be something else. I'm not sure what, but he has run every blood test under the sun and so far has come up with low thyroid, which is not getting any higher no matter how much synthroid he prescribes, and low folate.

At this time I am trying to get my doctor to authorize more testing but meanwhile I have gone gluten free and have had to use the Cholestyramine very seldom as in when I am going out to eat, just to make sure, but other than that, I have had no problems at home. I guess I am using it as a crutch but hey, once you have gone 12 years with no control of your bowels after eating, you can get a little bit paranoid about it.

The Cholesyramine is a great band-aid for what ails you, or has been for me. It has helped me to try to live somewhat of a normal life, while testing is ongoing to find out what my real problem is.

Judyin Philly Enthusiast

hi and welcome to the forum. saw you had 3 posts so far.

i am so happy to hear about you using the powder and your experiences.

i still have my gallbladder but it has really helped me.

you might want to ck this thread .........you might find it helpful

Open Original Shared Link I sent you to the last page..#18 but you will get some info on the things i've done.

if your interested.......i'd start reading the whole thread as there is alot of good info here.

Judy

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

    3. - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    4. - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.