Hi folks,
I've been dealing with a MAJOR flare up this week, in addition to going full time back to work with school starting (STRESS). Major bouts of WD multiple times a day/night, feeling and looking like there's an alien in my gut, bloating and looking like I'm 5 months pregnant, etc. etc....I know you all know what I'm talking about!I even resorted to trying to jump start my system, going back to 2 budesonide pills a day with no success. I have been so busy that I hadn't taken the time to sit down and figure out what has changed in my diet until yesterday. I had bought some Barbara's Puffins cereal after reading that they were gluten free. Went to Trader Joe's, took a box from the GF section and went on my merry way. Yesterday, I took the box out and no where does it say GF on the label. Googled it and lo and behold there are 2 types that are GF - Honey and one other but of course, the original flavor is NOT GF. This is just another wake up call for me that I can never take anything for granted, as far as diet goes! I stopped eating it yesterday so we will see how long it takes my system to calm down.
Also, this is just another indication to me that my GI doctor is out in left field, LOL. She is the one who asked why I had stopped eating gluten and told me to "just start eating gluten again"....UMMMMMM no thank you!
Inadvertenly glutened.....
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Dear Cathy,
When it happens to me not only do I revert to the simplest diet and up the entocort to 6mg for a couple of days, but also try and hit it with pepto-bismol and Imodium (since entocort is not a tap that can instantly turn of the flow). Can you take pepto-bismol?
I find a flare saps energy as well as all the other nastiness.....doubly difficult as you are going back to full time work.
Wishing you a speedy recovery from the flare, Ant
It ain't fun being "glutened" (or "soyed", "dairyed" or whatever).I even resorted to trying to jump start my system, going back to 2 budesonide pills a day with no success.
When it happens to me not only do I revert to the simplest diet and up the entocort to 6mg for a couple of days, but also try and hit it with pepto-bismol and Imodium (since entocort is not a tap that can instantly turn of the flow). Can you take pepto-bismol?
I find a flare saps energy as well as all the other nastiness.....doubly difficult as you are going back to full time work.
Wishing you a speedy recovery from the flare, Ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Hi Cathy,
I'm sorry that you're having to go through this, especially at such a stressful time, but at least you can take pride in the fact that you were able to figure out the exact cause of the relapse, something that your GI specialist would never have been able to do. Good for you!
I hope you'll be as good as new before the weekend is over.
Tex
I'm sorry that you're having to go through this, especially at such a stressful time, but at least you can take pride in the fact that you were able to figure out the exact cause of the relapse, something that your GI specialist would never have been able to do. Good for you!
I hope you'll be as good as new before the weekend is over.
Tex
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.
Thanks all for the understanding. Ant, I finally went and bought some Immodium yesterday. I went grocery shopping and almost had an accident so I'm still continuing to suffer. My poor belly hurts ALOT!! I haven't had a lot of success with Immodium in the past but hopefully this in addition to the budesonide will do the trick.ant wrote:Dear Cathy,
It ain't fun being "glutened" (or "soyed", "dairyed" or whatever).I even resorted to trying to jump start my system, going back to 2 budesonide pills a day with no success.
When it happens to me not only do I revert to the simplest diet and up the entocort to 6mg for a couple of days, but also try and hit it with pepto-bismol and Imodium (since entocort is not a tap that can instantly turn of the flow). Can you take pepto-bismol?
I find a flare saps energy as well as all the other nastiness.....doubly difficult as you are going back to full time work.
Wishing you a speedy recovery from the flare, Ant
Hi Cathy,
As a retired teacher, I can sympathize with you. Thankfully I wasn't teaching when my MC was dx'd; I was the technology director and could run to the bathroom when necessary. Teachers don't have that luxury.
I hope the combination of Entocort/Imodium works for you quickly. Being glutened is not fun.
Gloria
As a retired teacher, I can sympathize with you. Thankfully I wasn't teaching when my MC was dx'd; I was the technology director and could run to the bathroom when necessary. Teachers don't have that luxury.
I hope the combination of Entocort/Imodium works for you quickly. Being glutened is not fun.
Gloria
You never know what you can do until you have to do it.
Gloria,Gloria wrote:Hi Cathy,
As a retired teacher, I can sympathize with you. Thankfully I wasn't teaching when my MC was dx'd; I was the technology director and could run to the bathroom when necessary. Teachers don't have that luxury.
I hope the combination of Entocort/Imodium works for you quickly. Being glutened is not fun.
Gloria
I am a school psychologist so have more flexibility than a teacher. I can't imagine having a roomful of children all day long with this disease! I have an office with a bathroom right around the corner, thank God! I do have to be out and about and just plan my day out really well. I'm still in a flare and went up to 3 pills today to try and get it under control.
A quick update...
Still dealing with multiple bouts of WD-big chunks of food in poo, etc.etc. Bumped up the budesonide to 3 pills yesterday, which has helped calm my stomach significantly, although it hasn't stopped the D. The fatigue and joint pain has come back and is much worse for me to deal with than the D. I have lost 3 lbs. over the past week that I really couldn't stand to lose and now I need to call my GI and have her call in a refill of the budesonide as I'm going to run out this weekend. She will need convincing I am sure. Immodium, even double dose, does absolutely nothing for me!
Cathy,
Bummer. If your GI doc refuses to refill the prescription, ask your GP to write a prescription for Entocort. Often, GPs are much more sympathetic/empathetic toward their patients than GI specialists. Based on the accumulated experience of members here, as a group, GI specialists seem to be the "coldest", least sympathetic doctors in the medical community. But that's just my personal impression — I could certainly be wrong.
Tex
Bummer. If your GI doc refuses to refill the prescription, ask your GP to write a prescription for Entocort. Often, GPs are much more sympathetic/empathetic toward their patients than GI specialists. Based on the accumulated experience of members here, as a group, GI specialists seem to be the "coldest", least sympathetic doctors in the medical community. But that's just my personal impression — I could certainly be wrong.
Tex
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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Re: A quick update...
CathyMe. wrote:Still dealing with multiple bouts of WD-big chunks of food in poo, etc.etc. Bumped up the budesonide to 3 pills yesterday, which has helped calm my stomach significantly, although it hasn't stopped the D. The fatigue and joint pain has come back and is much worse for me to deal with than the D. I have lost 3 lbs. over the past week that I really couldn't stand to lose and now I need to call my GI and have her call in a refill of the budesonide as I'm going to run out this weekend. She will need convincing I am sure. Immodium, even double dose, does absolutely nothing for me!
Cathy,
When things were at their worst for me I would take up to 8 immodium to stop the D. I had read that it was safe and I never seemed to have any adverse effects. I had been used to needing only 1-2 immodium to stop things but when that stopped working I upped it. Of course as soon as I ate something the D would come back. I agree with Tex, my gp is much more approachable than any specialist I have seen and she seems to get that things can be complex and not simply for disease x take treatment y.
Hope you see some improvement soon.
Jean
Cathy,
I'm so sorry that things are only slightly better. You're doing the right thing by bumping up the Entocort to the full dosage. It usually works pretty quickly unless you've gone off and on it too many times. I hope you feel better soon.
Gloria
I'm so sorry that things are only slightly better. You're doing the right thing by bumping up the Entocort to the full dosage. It usually works pretty quickly unless you've gone off and on it too many times. I hope you feel better soon.
Gloria
You never know what you can do until you have to do it.
Hi Cathy,
I feel for you. I ate at a "pot luck" event Saturday night and only ate ham, chicken, and guacamole yet I got contaminated and "gluten-ed" somehow. Sunday, I was bloated, headachey (this is always my worst side-effect), and I had the head fog. Luckily, I feel better today. I hope yours passes just as quickly.
Cory
I feel for you. I ate at a "pot luck" event Saturday night and only ate ham, chicken, and guacamole yet I got contaminated and "gluten-ed" somehow. Sunday, I was bloated, headachey (this is always my worst side-effect), and I had the head fog. Luckily, I feel better today. I hope yours passes just as quickly.
Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)