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Weaning Off Entocort
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tex
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Joined: 24 May 2005

Posts: 30500
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2017 Sep 26 - 12:14 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 Jun 08, 2011 8:49 pm    Post subject: Reply with quote

You won't develop a dependency on Entocort in 90 days. If you use it for a year or two, it's a different situation.

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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Gloria
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Joined: 07 Jul 2007

Posts: 4754
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Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit (incl. tomatoes), all root vegetables, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, all squash, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Wed Jun 08, 2011 8:53 pm    Post subject: Reply with quote

Skunk Ape,

The weaning is to allow time to determine whether additional foods need to be eliminated before going completely off Entocort, otherwise, the D can or will return.

Gloria
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You never know what you can do until you have to do it.
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Skunk Ape



Joined: 07 Jun 2011

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PostPosted: Wed Jun 08, 2011 9:47 pm    Post subject: Reply with quote

tex wrote:
You won't develop a dependency on Entocort in 90 days. If you use it for a year or two, it's a different situation.

Tex


Yes, but the original poster said she had only been on it for 3.5 months (roughly 105 days). And yes, I do realize everyone reacts differently. I'm really not trying to be argumentative.
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What doesn't kill you, just makes you stronger.
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Skunk Ape



Joined: 07 Jun 2011

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PostPosted: Wed Jun 08, 2011 9:47 pm    Post subject: Reply with quote

Weaning from foods is not something I am familiar with. While I was officially diagnosed with LC a year ago, I know I've been battling it since around 1993. I have taken so much imodium in the past 15 years popping ten at a time doesn't make me bat an eye. I guess I'm pretty lucky. So far the LC hasn't caused me any weight lose, no aches or pains in my joints, no fever, no cramps or bloating, just extreme LC. The best it has been controlled was when I was taking Apriso 3/day and Entocort EC 3/day supplementing that with amodium tablets (perhaps 10-12/week) at the first sign of D. Which is a heck of a lot better than my imodium intake before I was diagnosed (20-25/day).

So If I can find another drug or drugs that work as well as the Apriso/Entocort combo I will be happy only taking 12 imodium tablets a week. The gluten diet will have to wait as a last resort. I am hoping I do well on the Asacol HD I just started on.
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Gloria
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Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit (incl. tomatoes), all root vegetables, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, all squash, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Thu Jun 09, 2011 7:04 pm    Post subject: Reply with quote

Skunk Ape wrote:
the original poster said she had only been on it for 3.5 months (roughly 105 days).


Tex is familiar with my long journey, which explains his post. I have been on and off Entocort for the past four years. The last time I was off of it completely was in the fall of 2008, and I relapsed within 6 weeks of getting off it. This is the first time since 2008 that I've "weaned" off of it, meaning I had been taking it continuously for two years before trying to get off of it again. I've relapsed each time I've gone off of it, so this time I've been very careful to gauge my reactions and eliminate more foods in the process.

Gloria
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janemick

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Joined: 24 Jun 2011

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PostPosted: Sun Jun 26, 2011 8:33 am    Post subject: Reply with quote

A special thanks to all who gave the experiences they had with weaning off Entocort. It was very helpful to me. I believe I was told to do it too soon from my diagnosis. I have had the symptomsfor years.
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Gloria
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Joined: 07 Jul 2007

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Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit (incl. tomatoes), all root vegetables, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, all squash, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Mon Aug 15, 2011 7:59 pm    Post subject: Reply with quote

Hi everyone,

I've been waiting to post a positive report on my progress, but it's time to wave the white flag.

I've been off Entocort for 18 weeks now, and I'm pretty much back to square one again. I am having D or almost D two to four times a day, sometimes with small accidents. My BMs are getting worse instead of better. I've taken 1/2 Imodium AD as needed, which has been several times a week. I tested yellow reactive on the MRT test (2.8) to Blue #1 food dye, an ingredient in Imodium AD. I don't know how much the dye affects me, so I'm reluctant to take larger doses regularly.

I can't help but wonder if I'll ever figure out all of my intolerances, or even if food is the only problem. Since I've stopped taking Entocort, I've given up additional foods: ghee, margarine, coconut, nut butters, Brussel sprouts, rice, and recently, quinoa. There isn't much left to eliminate. It seems that each time I give up a food, I have temporary improvement, but within a short time, I have to consider another food. I'm presently eating 9 different foods.

I am concerned that after being on this restricted diet for over a year, I am missing important nutrients. I was borderline low in potassium a few months ago and I'm unable to eat any fruits or vegetables which provide a high quantity of it. I haven't eaten fruit, other than occasional testing, in two years. I've been GF, EF, CF, and SF for four years.

I'm ready to throw in the towel with further food elimination. I don't think I'll have an adequate diet if I eliminate any more foods, both nutritionally and with calories. I'm considering going back on Entocort with the hope that I can expand my diet and have more predictability in my bathroom visits. I don't think I will try to wean off of it anymore unless I begin straining when I go. I'm hoping I can maintain on one pill per day and that I'll be able to order it overseas once DH retires in January.

I feel that I've given the diet my all, but it's just not enough. Fructose intolerance and the mast cell issue have complicated my situation. In addition, not being able to eat any root vegetables or squash have limited my calories and menu options.

I want to remind those new to the board that I am an unusual case. I believe that achieving remission through diet is possible and the preferred way. It's just not working for a situation as complicated as mine.

Gloria
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You never know what you can do until you have to do it.
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sarkin
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Joined: 10 Mar 2011

Posts: 2313
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2017 Sep 26 - 1:14 PM


Food Intolerances : Gluten, dairy, eggs (maybe more?)
Location: Brooklyn, NY

PostPosted: Mon Aug 15, 2011 9:18 pm    Post subject: Reply with quote

Gloria,

I'm sorry to hear that you've "lost" quinoa - and I did not realize that Imodium AD also contained a suspect ingredient for you. You're one of the best observational thinkers I know. I believe with all my heart that your conclusion about whether or not to resume Entocort will be as well thought out as is possible on this earth.

I'd also bet that you're right that the mast cells factor really undermines all the other work you've done, on diet. I don't know whether gastrocrom or quercetin or one of the H1 or H2 blockers would be useful, or how risky it would be to figure that out. I am experimenting with quercetin now, and taking 1/2 a Claritin daily. I believe it is helping, but I also think my observational skills aren't as keen as yours, and I am newer to this, for sure. I have only started down this path.

I thank you for your update, and wish the news were more joyful for you. I wonder whether discovering food intolerances at a younger/healthier state might help, though that's not so beneficial for you or for me. But maybe for others...

I do hope you're able to keep your 9 foods, and add something, and heal; I have a lot of faith in your wisdom in this process, which has truly been an inspiration for me.

Sending you my most heartful wishes for health, healing, and good nutrition,

Sara
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tex
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Joined: 24 May 2005

Posts: 30500
User's local time:
2017 Sep 26 - 12:14 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: Mon Aug 15, 2011 9:28 pm    Post subject: Reply with quote

Gloria,

I don't know what else to say, except that you may well be right - you've certainly given it your all, and tried very hard to make it work, but obviously, there's still something triggering your symptoms. sigh Hopefully, on a minimal dose, you'll be able to expand your diet a bit.

I can understand how difficult it was for you to write that post - it's almost as if you are announcing the end of an era, (you started this thread almost 4 years ago). And it makes me kind of sad to think about the implications, but you're right - life goes on, and we have to do whatever is necessary, to control our symptoms.

Incidentally, have you noticed how popular this thread is? Almost 28,600 views - that's a lotta views. Shocked

Tex
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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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Kari
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Joined: 05 Sep 2010

Posts: 1213
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2017 Sep 26 - 12:14 PM


Food Intolerances : gluten, dairy, soy
Location: Colorado

PostPosted: Sun Aug 21, 2011 8:00 am    Post subject: Reply with quote

Dear Gloria,

How are you doing now? I'm keeping my fingers crossed that going back on entocort has enabled you to get a more varied diet again. I remember when you where doing so well and even managed a "flare free" trip to Hawaii. Your story reminds me of how individual we are with regards to this disease. We each have to find our own way. I keep thinking about Grannyh who finally experienced "spontaneous remission" and could get off entocort, and Maggie, who after 10 years of diet diligence, finally succeeded in reaching remission.

Are you taking any supplements? I have not found any that I seem to tolerate - including vitamin D, B's, probiotics, protein powders, etc. I try to be out in the sun a lot, so my D reading is within "normal". For the time being I do well with Imodium, which I frequently reach for when things get to "loose".

Anyhow, I've been thinking a lot about you and your struggles, and sincerely hope that being back on entocort will do the trick for now. As time goes by, and you continue to stick with a GF, DF, etc. diet, it would seem that your gut is bound to heal x fingers . As usual, I look forward to following along on your MC journey.

Love and hugs,
Kari
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Gloria
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Joined: 07 Jul 2007

Posts: 4754
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2017 Sep 26 - 12:14 PM


Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit (incl. tomatoes), all root vegetables, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, all squash, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Sun Aug 21, 2011 7:45 pm    Post subject: Reply with quote

Hi Kari,

Tex was right; it was pretty hard to write the post above. It's even harder to actually resume taking Entocort, and I haven't started yet.

When I was visiting my daughter a couple of weeks ago, a near-Norman suddenly appeared. I was excited, of course, and assumed that the rice elimination was finally having a positive effect. But then I began to deteriorate and after a few days, and I was back to square one. It dawned on me after I wrote my post that I had forgotten to take Simvastatin for a few days before the near-Norman appeared. After I resumed taking it, I began having problems again. When I realized that there might be a connection, I stopped taking it, and I'm having improved BMs again. Eliminating quinoa has also helped.

I'd gone off Simvastatin before without seeing any improvement, but I was eating other foods that I've since eliminated. It's too soon to know if this will cause a remission of my MC, but I have a little more hope. I'm going to give it a couple of weeks. My immune system seems to always want something to battle, and it's just been a matter of time before another intolerance pops up.

My diet is very similar to what it's been this past year, but I no longer eat rice cereal, creamed quinoa, or rice with dinner. I tried making bread without rice, and it flopped, so I'm not eating bread anymore. I've substituted corn tortillas or almond-corn tortillas for bread when I'm away from home, and I eat a muffin instead of rice cereal for breakfast and rice at dinner. I also substitute a muffin for the creamed quinoa. I've lost a couple of pounds and am hoping I won't lose any more. I have learned how to make muffins with almond flour, cornstarch and arrowroot.

I need to enter my foods into a nutritional database to see if I'm getting sufficient nutrients. I tried eating a low-acid tomato from my garden last week with Histame and Zyrtec, but I still had a strong reaction. I have over a dozen itchy head bumps due to being outside without a hat for a half hour. They are clearing up, thank goodness.

Tex wrote:
Incidentally, have you noticed how popular this thread is? Almost 28,600 views - that's a lotta views.

Yes, I'm aware that there are many views of this thread. I know that a lot of people are watching my progress. I feel a responsibility to be honest, and to give them hope. I have hope at the moment, and want those reading this to also have it.

I will keep you posted.

Gloria
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You never know what you can do until you have to do it.
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tex
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Joined: 24 May 2005

Posts: 30500
User's local time:
2017 Sep 26 - 12:14 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: Sun Aug 21, 2011 8:44 pm    Post subject: Reply with quote

Gloria,

I knew that statins were listed as a trigger for MC, but I believe that you're the first person I'm actually aware of who has been able to confirm it, by personal experience. That observation was outstanding detective work. If you're already seeing improvement, that's very, very encouraging.

If this was the final all-important piece of the puzzle, and you continue to improve, I'll bet that after a while, you'll be able to add some foods back into your diet. Your latest post has made my week. thumbs up

Thanks for the update.

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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Polly
Moderator
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Joined: 25 May 2005

Posts: 5153
User's local time:
2017 Sep 26 - 1:14 PM


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: Mon Aug 22, 2011 6:27 am    Post subject: Reply with quote

Gloria,

Me too - your last post with a little cautious optimism made my week too. Am here in the peanut gallery cheering for you and keeping all fingers and toes crossed. x fingers As a fellow double DQ1, I emphasize totally with your trials and tribulations.

I have one thought, which you may have already considered or done: a trial of prednisone, followed by maintenance with Entocort and then tapering. I know this has worked for some of our members in the past. The prednisone serves to "jolt" the MC into submission. And you seem to tolerate steroids very well. Perhaps you are one who rapidly metabolizes certain drugs like steroids and therefore need a higher dose. (I see this sometimes in kiddies - where they might need a much greater dose of medication than usual). Just a thought.

Hugs,

Polly
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Kari
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Joined: 05 Sep 2010

Posts: 1213
User's local time:
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Food Intolerances : gluten, dairy, soy
Location: Colorado

PostPosted: Mon Aug 22, 2011 9:40 am    Post subject: Reply with quote

Hi Gloria,

Thanks for the update - it's good to read that you haven't given up on the "entocort free" yet. I so appreciate your honesty and lack of sugar coating in your posts. Sharing the real truth about our individual struggles here is invaluable. I know just what you mean about feeling an urge to communicate only the good news to new people who come here for help, but I believe that it is just as important to share the tough news, because the reality is that this is a tough disease to combat. We are each responsible for our own approach, and learn from each other in so many ways.

Keep up the fight, and as usual, I look forward to sharing in your MC journey through your updates here.

Love,
Kari
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"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
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Ginny
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Canada

Joined: 12 Nov 2009

Posts: 278
User's local time:
2017 Sep 26 - 12:14 PM


Food Intolerances : gluten, dairy, eggs, soy, yeast, corn, all nightshades, tapioca, chicken, beef, no fruits except bananas and applesauce, pork, coconut
Location: Willis, Texas

PostPosted: Thu Aug 25, 2011 11:05 am    Post subject: Reply with quote

Gloria, you know my heart bleeds for you! I am just catching up on posts (500+). I feel your pain. I have not been at it as long as you, but I am also back to square one and I am taking the max I can take of Entocort (2) plus 1/2 Imodium AM/PM. I just weighed in at 99#'s fully clothed at 5'5", so you know I understand the weight issue.

I finally got into a doc (with some help from friends; not taking any new patients prior) who is an alternative doc. I will PM you what I am doing now. Since I have just begun a new regiment, I do not want to post until I see results. We are hard cases and I believe it takes a variety of healing processes.

My friends tell me to not give up hope and keep trying, but unless you can see some consistency; it is hard to do!! Much love, G
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