Imuran failed

Pat · Post by **Pat** » Sun Nov 02, 2008 4:02 pm

Haven't posted in awhile but have been reading. I thought it was the Imuran that was helping me but at the same time I was suspicious that maybe it was the Entocort that I was also on. July was my best month. I got off the Entocort at the end of July and then by the end of Aug I was having accidents again. Now I am off the Imuran and back on Entocort 9mg/day, all under the advice of my doctor. Also I have put myself back on the diet but more like Paleo. I am going to try to go completely Paleo. And I am back on a probiotic. The GF, DF, SF, FF didn't seem to help after 10 months so I quit in April. I guess I should have stuck with it.

I also have eliminated the legumes. When I mentioned to the dr that I had put myself back on the diet but much strickter he started talking about the SCD diet and some of his patients were helped by that diet ( funny he never mentioned that before). When I went back and reread about it I don't see how that would work for me. Dairy makes me have reflux and they eat alot of yogurt. Also they eat alot of sugar and I just cannot do that. Fructose intolerance. I really notice that it makes me nauseous. I don't notice much difference with the D when I have eaten sugar. No immediate reactions to gluten or soy. But I am off those now. Now what?

I do have an appointment with a dr in Dallas, Dr. Schiller, who ( according to my dr) specializes in difficult D cases. I'm hoping that the diet will kick in and I won't have to go. Wishful thinking!!!! I realize this may take some time, alot of time. I really appreciate your support and ideas!!!

Also wanted to ask about Dr. Dahlman's program? Sounds like paleo with rice and potatoes and lots of supplements. Know anything about that?

Hello to all the newbies!

Pat

Post by **tex** » Sun Nov 02, 2008 4:57 pm

Hi Pat,

I'm sorry to hear that after all the time and effort you've devoted to various treatments, you are not yet in remission. The treatment plan you just described has to work. Have you read all of Gloria's long thread about "Weaning off Encotort"? It took her a long time, (because her case was unusually tough, also), but she finally achieved remission, by using a combination of diet and Entocort.

I'm not familiar with Dr. Dahlman's program, but if all it adds to the paleo diet is rice and potatoes, (and supplements), I see no reason why it shouldn't work, (unless, of course, any of the additives in the supplements turn out to cause problems for you). Very, very few people are intolerant of rice or potatoes.

I agree with you, that the downfall of the SCD, (for most of us, anyway), is the inclusion of dairy products. Dairy products definitely tend to cause reflux problems, and it's kind of surprising how many of us have GERD, or related issues.

I wish you the best of luck with the plan, and please keep us updated.

Tex

Pat · Post by **Pat** » Sun Nov 02, 2008 7:24 pm

Tex,

Thanks for your quick reply. You amaze me. Yes, I have read Gloria's long post but for some reason I cannot find it now. Has it been moved?

Pat

Post by **tex** » Sun Nov 02, 2008 9:14 pm

Pat,

It just dropped down the page a ways. It's here:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6730

Tex

Gloria · Post by **Gloria** » Mon Nov 03, 2008 10:41 pm

Oh, Pat, I'm so sorry that you are still having problems. I agree with Tex that the Paleo diet seems like it would be the best bet for you.

The only thing I can suggest is that you also eliminate eggs for a while. I don't know if you've read Polly's recent posting where she said she suspected that eggs were giving her some problems. Since she's eliminated them, she has been able to eat citrus and tomatoes. I seem to recall that your Enterolab didn't indicate that you were intolerant to eggs, but perhaps somewhere along the way, that might have changed.

I'm hoping that you can finally get to the bottom of this. I know that I was very discouraged many times and didn't think I'd ever figure it out. I'm still amazed and appreciative that I did. Good Luck and keep us posted.

Gloria

Pat · Post by **Pat** » Tue Nov 04, 2008 5:17 pm

Gloria,
Thanks for responding. My problem on this diet is getting enough calories. I seem to already be losing weight and don't have any to lose. I try to snack between meals but it is hard on the days that I work since I am a dental hygienst and don't have time to eat between patients. And what to eat? I really can't eat much fruit which I love. We are going out of town tomorrow and won't be back til Sun. night. I agreed on this trip when I felt better now I am stuck. I know we will be eating out a lot so that will make things difficult. I'll do my best. I will check back next week.

Thanks again for your support.

Pat

Polly · Post by **Polly** » Mon Nov 10, 2008 6:28 pm

Hi Pat!

Actually, I'm almost happy to hear that the Imuran didn't work - it is such a big gun to be on for any length of time. But of course I am sorry that you are still suffer.

I think it's great you are going paleo. Have you read the book, "The Paleo Diet"? I can do all paleo foods except eggs (which were probably a rare food in the original paleo diet). Also, have you checked out Elizabeth's blog on paleo recipes? Tonight I made the coconut curry chicken, and it was wonderful.

Hang in there - you WILL find the path, I am sure. BTW, please don't put too much hope in the GI experts. I don't know Dr. Schiller and he may be wonderful, but I wouldn't count on it. Usually the collective wisdom on the Board far exceeds that of almost all GI docs. I think a member of the original board made a special trip to see Dr. Schiller and was disappointed. But I may have that wrong, and of course, things could have changed since then. Don't mean to rain on your parade but just don't want you to have unrealisitic expections.

Love,

Polly

P.S. Re the calories, can you tolerate olives and guacamole? How about nut butters (almond, macadamia, pecan, etc.)? Also, a piece of leftover meat or fowl makes a good snack. (Karen, one of our first "cavepeople" said: "always carry a pork chop in your pocketbook". LOL!

Pat · Post by **Pat** » Tue Nov 11, 2008 6:33 pm

Polly,

Yes, I have read "The Paleo Diet" and it sounds great but I guess since my food still goes through me faster than normal and maybe I am not absorbing all my calories I am hungry again very quickly. I eat almond butter and avocados. Green olives are just too salty. I bought some black olives tonight and will try them. I have never had an immediate reaction to any foods except fruit and sugar (not D just nausea and gurgling), but seem to be somewhat better with some fruits since I am eating no sugar. I don't even have an immediate reaction to dairy but long term I get reflux. I seem to be intolerant to everything and have D no matter what. Thankfully the Entocort is beginning to help.

Thanks for your input, Polly. I really do appreciate your support. I intend to stick with this diet and get better.

Pat