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Withdrawal Symptoms!

 
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Rubysmom

United States

Joined: 28 Apr 2013

Posts: 4
User's local time:
2017 Jun 27 - 6:18 PM


Food Intolerances : gluten and ?
Location: Spokane

PostPosted: Mon May 20, 2013 3:59 pm    Post subject: Withdrawal Symptoms! Reply with quote

I joined this forum a while ago but have never posted before. First, thanks to Tex and everyone for all the information I have gleaned on the forum. I was diagnosed with CD last July, and with CC in early March. I was put on Entocort. I was fine on the highest and second highest doses, but regressed a little when I went to one a day. Then, my first day of skipping a dose, I was up all night! The doctor put my dose back up, but I had to experiment and only improved on two a day. I really want to be able to get off the Entocort, so based on the info here, I signed up for a Panel C with Enterolab. I got the results last Thursday. I had 4 items scoring 3 plus. Three of them were foods I rarely, if ever, eat (Beef, Tuna and Oats). But RICE was a mainstay of my gf diet!!! I was in shock. So Friday was my first day with no rice. Saturday I had withdrawal (exhaustion), and slept for three hours in the middle of the day. Saturday I was fine. I should mention, (ahem) that I have had Norman the Perfect with me since Saturday. I am ecstatic and just pray that it lasts. I was so pleased with the results that I called Enterolab and authorized them to do another panel! I have another week to take the Entocort once a day, and then go to alternate days. I guess that is when I will really know how I am doing.

Kathy
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tex
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Joined: 24 May 2005

Posts: 30082
User's local time:
2017 Jun 27 - 6:18 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: Tue May 21, 2013 8:54 am    Post subject: Reply with quote

Hi Kathy,

Welcome to our internet family. Congratulations on your rapid improvement. It's good to hear that you were able to pinpoint that problem so quickly, especially since a sensitivity to rice is somewhat rare.

Based on the accumulated experiences of many of the members here, we have found that when treatment with Entocort (budesonide) is discontinued, a rebound effect can occur, apparently due to a rebuilding of mast cell numbers, which can lead to an increase in inflammation. Because of that effect, many patients find it very difficult to discontinue Entocort without suffering a relapse of symptoms. We have found by experience that the slower the rate at which the dosage of Entocort is tapered, especially in the latter stages of the process, the better the odds of avoiding a relapse.

IOW, when lowering the dosage rate from 2 capsules to 1, spending maybe a week or so alternating between 2 one day and 1 the next, seems to help. Likewise, when lowering the dosage below 1 per day, taking a capsule for 2 days in a row, and then skipping a day, and continuing that pattern for maybe a week, before going to 1 every other day, seems to be helpful. The same pattern is followed when reducing to 1 every 3rd day, and some members slowly taper to 1 every 4th day, etc. It's a shame that lower dosage capsules are not available, but the pattern I've described here seems to work reasonably well.

Again, welcome aboard, and please feel free to ask anything.

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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