Happy Labor Day, Everyone!
I've been quiet of late which, for me, means GOOD news aka "normans". However, 8 days ago I began with a little D, and now I'm back to where I started, all D all the time.....up to 10 BM's/day. Also been feeling Blahh again , just as I did in the beginning.....brain fog, tired, achy, some numbness/tingling in hands & feet, etc.
A bit of history: I was diagnosed with CC on 5/1 of this year. I've been GF for a little over 3 months now although my Enterolab for gluten was WNL. IOW, I may be one of those people who doesn't produce IgA antibodies but made great progress by eliminating gluten from my diet nonetheless. (I had no further testing done) I HAVE been taking Entocort, 9mg/day, for 2 months, and since I was doing so well, had begun to taper. The D started when I was down to 3mg & 6mg on alternating days. When the D started, I immediately went back to 9mg/daily, but D has only worsened.
So here's the deal, I am 99.9% sure I did not "Gluten Myself". With the gluten gone from my diet, could my symptoms relate to a reaction to a different antigen that's just now rearing its ugly head?
Feeling quite discouraged, confused, afraid to eat, and generally unwell.....looking to have you share some of your experience, strength and hope with me to get to the bottom of this, pun not intended. :-/
Shar
P.S. although I tend to be quiet, please know I do lurk several times/week and have learned so much from you. VERY Grateful!!
*Happiness WAS a dry fart*
Having a Flare....!?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Shar,
Yes, your suspicions are correct. Your reaction pattern is typical of what happens when someone tries to wean off Entocort but they still have one or more major food sensitivities in their diet.
I would suggest removing all dairy products and all foods that contain soy ingredients from your diet. If that brings significant improvement within a couple of weeks, then you can test dairy and soy (test only one at a time), for about 3 days each, to see which one is the problem (or to see if both are a problem).
If you don't improve within a week or so, then remove eggs from your diet, also, and see how that goes.
Good luck and keep us posted.
Tex
P. S. I see that you modified your tag line to reflect the current situation. It's good to see that you still have a sense of humor despite having to deal with a relapse.
Yes, your suspicions are correct. Your reaction pattern is typical of what happens when someone tries to wean off Entocort but they still have one or more major food sensitivities in their diet.
I would suggest removing all dairy products and all foods that contain soy ingredients from your diet. If that brings significant improvement within a couple of weeks, then you can test dairy and soy (test only one at a time), for about 3 days each, to see which one is the problem (or to see if both are a problem).
If you don't improve within a week or so, then remove eggs from your diet, also, and see how that goes.
Good luck and keep us posted.
Tex
P. S. I see that you modified your tag line to reflect the current situation. It's good to see that you still have a sense of humor despite having to deal with a relapse.
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.
TY for your quick resonse, Tex!!
I am already EF by happenstance. Will remain that way so as not to confuse the situation.
As for Dairy, yes I do still eat cheese, nothing else dairy, but that certainly could be enough to get a reaction. Time to quit that too and see what happens.
Ahhh Soy! I THOUGHT I was soy free, but just saw it listed as an ingredient in the rice that I had been doing well on until now. *sigh* lol Oh well........!
Which brings me to the next question........Should I continue on the Entocort while I'm eliminating these other foods? If I understand what you're saying correctly, the Entocort simply masks the symptoms caused by Dairy and Soy if they truly are a problem for me.
Thanks again,
Shar
xox
P.S. Some progress tho....Maybe....supper has been in my tummy for 4 hours now, and so far, so good. Entocort is currently at 6mg / 9mg on alternating days
I am already EF by happenstance. Will remain that way so as not to confuse the situation.
As for Dairy, yes I do still eat cheese, nothing else dairy, but that certainly could be enough to get a reaction. Time to quit that too and see what happens.
Ahhh Soy! I THOUGHT I was soy free, but just saw it listed as an ingredient in the rice that I had been doing well on until now. *sigh* lol Oh well........!
Which brings me to the next question........Should I continue on the Entocort while I'm eliminating these other foods? If I understand what you're saying correctly, the Entocort simply masks the symptoms caused by Dairy and Soy if they truly are a problem for me.
Thanks again,
Shar
xox
P.S. Some progress tho....Maybe....supper has been in my tummy for 4 hours now, and so far, so good. Entocort is currently at 6mg / 9mg on alternating days
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Re: Having a Flare....!?
LOL!!Shar76 wrote:*Happiness WAS a dry fart*
I suspect you like me have masked intolerances. I am now down to 3mg - I got to alternate days and immediately had pain so went back on the daily dose. I am having Norman's most days. This is my second attempt to come off the Entocort and I have taken it much more slowly this time so I haven't had a build up of inflamation (pain is a good indicator for me I have come to realise as it tends to occur before my BMs change pattern). I am seeing my GP next week to discuss the next step which I feel is to eliminate dairy. I have kept a daily record of BMs and dosage for the last year on a spreadsheet so I am able to demonstrate exactly what is going on to my doctors! I am doing really well on the 3mg dosage and have tonnes of energy. I have even upped my exercise from walking to a bit of running - I am building it up! I would never have dared run last year (except to the loo!) so this condition can be managed! I have kept reading on this forum and have learnt so much as a result. I see my Consultant on 26 September so I want to test dairy before then.
Stick with it and look at your diet especially - going gluten free was dramatic in terms of result for me and I hope to be able to identify the other triggers so that I can get off Entocort completely!
Good luck!
Anne
If you ever feel too insignificant to be noticed, you have never been to bed with a mosquito!
If you are using Entocort now, then if I were in that situation I would continue to use it in order to be able to accurately judge your body's response to removing the additional foods from your diet. When you do wean off, it should be veeeerrrrrrry slowly, because discontinuing budesonide too quickly appears to cause a mast cell population rebound that triggers a relapse of symptoms for most people who use the medication.Shar wrote:Which brings me to the next question........Should I continue on the Entocort while I'm eliminating these other foods? If I understand what you're saying correctly, the Entocort simply masks the symptoms caused by Dairy and Soy if they truly are a problem for me.
Anne,
Good post — thanks for the update. And good luck with the appointment.
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.
Hi Shar.
I am IgA deficient, so all of my food intolerances have been figured out the old fashioned way. When i was down to 3mg. a day of Entocort is when I realized i was reacting to peanut butter ( a soy cousin), so I took out all soy related foods like legumes and beans. That seemed to help. I never went back up in dose, but my symptoms weren't as bad as yours. I would definitely stay on the Entocort, omit the dairy and soy and when your symptoms subside, try to wean again SLOWLY. I spent two months going from one pill a day to being completely off.
Another thing you might look into is your fiber intake and your sugar intake. Both can cause a lot of D. You might want to take out all raw fruits and veggies ( if you eat any) and sugar. Remember, you can always test each of these things back in one at a time once you have healed. I can now eat certain beans, small salads, some raw veggies, all cooked veggies, and homemade popcorn.... but fruit is still an issue. This all takes time to figure it out.
Good luck
Leah
I am IgA deficient, so all of my food intolerances have been figured out the old fashioned way. When i was down to 3mg. a day of Entocort is when I realized i was reacting to peanut butter ( a soy cousin), so I took out all soy related foods like legumes and beans. That seemed to help. I never went back up in dose, but my symptoms weren't as bad as yours. I would definitely stay on the Entocort, omit the dairy and soy and when your symptoms subside, try to wean again SLOWLY. I spent two months going from one pill a day to being completely off.
Another thing you might look into is your fiber intake and your sugar intake. Both can cause a lot of D. You might want to take out all raw fruits and veggies ( if you eat any) and sugar. Remember, you can always test each of these things back in one at a time once you have healed. I can now eat certain beans, small salads, some raw veggies, all cooked veggies, and homemade popcorn.... but fruit is still an issue. This all takes time to figure it out.
Good luck
Leah
OK Gang, as of yesterday I am now SF and DF (GF since May) and I'm no better. LOL I know it takes time and I'm joking, sort of, but dang this is getting more difficult as my circle of acceptable foods shrinks.
Tex, I have continued with the Entocort as I had the same idea as you, i.e. stopping now would/could add more problems. When I do begin to taper again, I will proceed much more slowly as all of you have suggested, but as of today that seems far in the future as I continue with pain and the Big D and a huge fear of eating anything.
Leah, I knew there was another "deficient" here and it's YOU, lol, so yes, we proceed in the old-timey manner of trying foods and either keeping or discarding them depending on our reactions. I have to tell you though Peanut Butter has always been my go-to comfort food with no problems, or so I thought, until last night. I suspect I am now reacting to it too. I mentioned earlier that I get tingling feet and hands when a food does not agree with me. I was pleasantly surprised last evening when I had noticed no tingling anywhere........that is until I ate PB on a corn tortilla. Within 30 minutes I had slight tingling on the bottoms of my feet and my gut felt like it was full of Mexican Jumping Beans. Shar has now decided to avoid ALL legumes, not just soy. Oy!! BTW, I am diabetic also so sugar is not an issue for me....it has one of those "poison" signs on it. I also avoid any/all raw fruits & veggies.
Anne, thanks for the pep talk. It helps a lot to know I'm not alone and just look at you, running again. Wow, I LOVE it!! I, too, cannot imagine running anywhere except the potty, so you have given me lots of hope. Best of Luck with your appt., and please do let us know how it goes and of your continued progress.
That's it from here. Updates as they happen....well not each and every one. lol
Shar
XOX
P.S. Am still searching for a Sublingual D that doesn't contain Milk. All help much appreciated.
_______________
**Happiness WAS a dry fart**
Tex, I have continued with the Entocort as I had the same idea as you, i.e. stopping now would/could add more problems. When I do begin to taper again, I will proceed much more slowly as all of you have suggested, but as of today that seems far in the future as I continue with pain and the Big D and a huge fear of eating anything.
Leah, I knew there was another "deficient" here and it's YOU, lol, so yes, we proceed in the old-timey manner of trying foods and either keeping or discarding them depending on our reactions. I have to tell you though Peanut Butter has always been my go-to comfort food with no problems, or so I thought, until last night. I suspect I am now reacting to it too. I mentioned earlier that I get tingling feet and hands when a food does not agree with me. I was pleasantly surprised last evening when I had noticed no tingling anywhere........that is until I ate PB on a corn tortilla. Within 30 minutes I had slight tingling on the bottoms of my feet and my gut felt like it was full of Mexican Jumping Beans. Shar has now decided to avoid ALL legumes, not just soy. Oy!! BTW, I am diabetic also so sugar is not an issue for me....it has one of those "poison" signs on it. I also avoid any/all raw fruits & veggies.
Anne, thanks for the pep talk. It helps a lot to know I'm not alone and just look at you, running again. Wow, I LOVE it!! I, too, cannot imagine running anywhere except the potty, so you have given me lots of hope. Best of Luck with your appt., and please do let us know how it goes and of your continued progress.
That's it from here. Updates as they happen....well not each and every one. lol
Shar
XOX
P.S. Am still searching for a Sublingual D that doesn't contain Milk. All help much appreciated.
_______________
**Happiness WAS a dry fart**
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Hi Shar, I'm sorry you're flaring on Entocort. I feel you on the peanut butter. Maybe you can try sunbutter in small amounts. I find it is a nice treat if I just have a little. I don't miss the PB now.
Best to you,
Nancy
Best to you,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
I use to eat peanut butter also. I was so sad when I had to change to almond butter ( sunbutter didn't work for me either). I go to a store that has fresh roasted almonds in a machine that grinds it right into the container fresh. it's the best way.
just keep reminding yourself that all the foods you are giving up now may not be gone forever. Heal, Heal, Heal for now
Hope you start to feel better soon
Leah
just keep reminding yourself that all the foods you are giving up now may not be gone forever. Heal, Heal, Heal for now
Hope you start to feel better soon
Leah
UkuleleLady wrote:I feel you on the peanut butter. Maybe you can try sunbutter in small amounts. I find it is a nice treat if I just have a little. I don't miss the PB now.
Best to you,
Nancy
Oh MY, bless you, Nancy!! I did not know about 'Sunbutter', but I do NOW after using the Google. :)) Sounds like a dream. I will let my poor tummy heal for a few weeks and then give it a try.
TY_TY_TY!
Shar
