Off Entocort - Gluten and Dairy free- now what :(

Discussions on the details of treatment programs using either diet, medications, or a combination of the two, can take place here.

Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
CNewman
Posts: 19
Joined: Thu Mar 08, 2012 3:53 pm

Off Entocort - Gluten and Dairy free- now what :(

Post by CNewman »

I came off of Entocort about 2.5/3 weeks ago. A little less than a week after I came off of it, I started relapsing. I was on it for 6 weeks, and I had been newly diagnosed w/ CC when I was put on it. I immediately started gluten and dairy free, and stopped taking the NSAIDs I had been on. The Entocort helped a bunch.

But now- I am relapsing and even having problems I didn't have before:

Yesterday I felt so bloated, and my stomach was making the LOUDEST noises.
I am currently rehearsing for a play that opens this weekend, and my stomach was so distended that I could barely fit into my costumes. I was so distracted by the noises, the bloating and the pain from what obviously was trapped gas- that it was just a nightmare.
Now, the next morning- I woke up feeling much better. Got ready for work. And here I am. I got my tea, and even started to eat my Udi's muffin for breakfast. About halfway through-30+ minutes after starting to nibble (I eat really slow nowadays) I start hearing the gurgling noises, and the pain is back.

What is going on?!?!

Is it time for a fully strict elimination diet?

I can't go back on the entocort right now, as my husband just started a new job, and we don't have insurance yet...

I'm ready to beg my parents to give me the $$ for the Enterolab test I have read so much about!

:???:
User avatar
tex
Site Admin
Site Admin
Posts: 35067
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi C.

Sorry to hear that you relapsed. Unfortunately, that's a common problem early on in the treatment. There are two main possibilities.

1. Your intestines simply haven't had sufficient time to heal

2. You may have other food sensitivities that are causing the problem.

Both scenarios are probably occurring. If I were in your shoes, I would stop or at least minimize eating commercially manufactured foods, especially those with more than 5 ingredients. A long ingredient list is a very high risk for someone with MC. You didn't specify which muffins you bought, but here's the ingredient list for Udi's Blueberry Muffins, for example:
INGREDIENTS: UDI’S BEST BLEND (TAPIOCA STARCH, BROWN RICE FLOUR), EVAPORATED CANE JUICE, WHOLE EGGS, WATER, WILD BLUEBERRIES, NON-GMO VEGETABLE OIL (CANOLA OR SUNFLOWER OR SAFFLOWER), PALM OIL, BAKING POWDER (SODIUM ACID PYROPHOSPHATE, SODIUM BICARBONATE, CORN STARCH, MONOCALCIUM PHOSPHATE), SALT, VANILLA (EXTRACTIVES OF VANILLA BEANS, WATER AND ALCOHOL), SUNFLOWER LECITHIN (SUNFLOWER LECITHIN, TRICALCIUM PHOSPHATE, RICE FLOUR), LEMON FLAVEDO (LEMON PEEL, SUGAR, LEMON OIL), XANTHAN GUM, CRYSTAL SUGAR (SUGAR, CARNAUBA WAX). CONTAINS EGG.
CONTAINS EGGS
I don't see soy in that particular product, but most foods contain soy derivatives, and over half of us are sensitive to soy. Since you don't know all your sensitivities at this point, an ingredient list such as this one is fraught with risks. I've highlighted in red the ingredients that many of us are commonly sensitive to (at least before we heal).

It's best to eat a very bland, non-inflammatory diet for roughly a year (depending on how much damage has accrued that needs to heal) to prevent the inflammation from being regenerated.

It's possible to order generic Entocort (budesonide) from overseas for a fraction of the cost of domestic budesonide. Many members get their budesonide from the online overseas pharmacy at the link below. The product (Budez CR) seems to work exactly the same as the domestic budesonide products, and you can order a 3 month supply (270 capsules) for $121.50 plus shipping. Just don't order more than 270 capsules at a time, because U. S. Customs inspectors have a policy of confiscating orders for more than a 3 month supply at one time. Unfortunately, due to having to go through customs means that it usually takes 2 to 3 weeks to receive an order, depending on how busy they are at the port of entry. Since prescriptions written by a doctor licensed to practice in the U. S. are worthless outside the borders of this country, no prescription is needed to order from this pharmacy:

https://www.alldaychemist.com/1447-budez-cr-3mg.html

Most members find that proper intestinal healing requires much longer than the GI docs realize, and they have to take budesonide for at least 6 months to a year before they can successfully wean off it without relapsing. Also, please be aware that the more time you take to complete the final dose tapering, the better your chances of maintaining remission after the drug is discontinued (IOW, the slower the better). There appears to be a possible rebound effect (similar to the rebound effect that results from discontinuing a PPI) that promotes increased inflammation after the drug is withdrawn (due to mast cell numbers returning to the normal population level).

Good luck with this, and please continue to ask questions, because this is a very common problem among the members here. The length of treatment and the withdrawal regimen are crucial to success when using budesonide. And, of course, all food sensitivities must be removed from the diet before discontinuing budesonide, or relapse is very likely.

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.
User avatar
coryhub
Gentoo Penguin
Gentoo Penguin
Posts: 439
Joined: Tue Jul 12, 2011 11:49 am
Location: Ontario, Canada

Post by coryhub »

Tex, you answered a question I'd had about how long I could stay on budesonide. I'm glad I can stay on it longer now that I am covered by my insurance. Right now, I take a 3mg pill every other day and it seems to be enough to keep me feeling fine. I'm going to try and stay like this until the end of July.
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
CathyMe.
Rockhopper Penguin
Rockhopper Penguin
Posts: 641
Joined: Mon Feb 27, 2012 10:42 am

Post by CathyMe. »

coryhub wrote:Tex, you answered a question I'd had about how long I could stay on budesonide. I'm glad I can stay on it longer now that I am covered by my insurance. Right now, I take a 3mg pill every other day and it seems to be enough to keep me feeling fine. I'm going to try and stay like this until the end of July.
Hi Cory,
Don't mean to take over this thread but I too would encourage a SLOW taper off the budesonide. I am currently taking 1x3mg. pill every 4 days successfully and this week I am going to try for 1 every 5 days. I started taking it the end of February so will be doing this until @ least August or Sept. in addition to going GF/DF/SF. I have not had any stomach grumbling @ all and feel like I'm finally healing. Good luck to you!
User avatar
coryhub
Gentoo Penguin
Gentoo Penguin
Posts: 439
Joined: Tue Jul 12, 2011 11:49 am
Location: Ontario, Canada

Post by coryhub »

Hi Cathy,
Thanks for adding your experience with budesonide. I will follow your lead and taper off slowly. I wish you an easy roll-off and a long remission. I did get a little worried reading some posts about long term use of Entocort causing blurred vision as I am very near-sighted so I do want to roll off around the same time you do July or August. Isn't it nice to not wake up with an early morning gut ache?!
Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Post Reply

Return to “Discussions on Treatment Options Using Diet, and/or Medications”