2

votes

Paleo diet vs immunosuppressants?

Answered on August 19, 2014
Created January 26, 2013 at 2:31 AM

I am 53, up until this time last year, I was the picture of health. I ate vegetarian for 3 years, worked out routinely, and at 5'7, I weighed 132 lbs. I took no meds, no vitamins, no supplements. Then I got sick. Really sick. Really fast, like in 30 days, looked like a cancer patient, oral ulcers so bad I couldn't eat or talk. Family history of Crohn's, so even though I had no other symptoms, I had a colonoscopy to rule that out. Long story short, colon perforation,really sick colon with lots of ulcerations, ended up with ileostomy for 9 months, recently reversed. I started taking Imuran 100 mg orally daily in May;in July I started Remicade IV every 8 weeks, now every 6 weeks. I took Prednisone for months, but am off of that now. I have just this month started Paleo, trying to follow the autoimmune diet, but I do eat pastured hen eggs and some nuts. My GI doctor says eat whatever I want to, GP and surgeon say eat whatever I want. My question is, am I being unreasonable to think that this wonderful, healthy choice of food can help me get off of these horrible poisonous medications? I'm a medical professional, but this is so far removed from my specialty and NOBODY wants to discuss the possibility of diet vs. medication. I am now down to 118 lbs., I know I can't lose any more weight, but I am eating all I want and can stand to eat. Also, should I be taking any supplements? I am only taking Vit. D3 5000 daily. BTW, after the first surgery, I started eating meat again,as I became very anemic and seriously craved meat, problem solved. And the Crohns diagnosis was never confirmed, Crohns vs Behcet's Disease, even though I have no other symptom of Behcet's. I know this is a lot of info and kind of scattered, but I want to get off of these meds and stay healthy!

089dd41b18fbb95ebb5347cded708d98

(5635)

on January 26, 2013
at 10:05 PM

sure, no problem, michele! i know it sucks thinking that we'll have to be on meds forever. i was totally all natural before i got this stupid disease and still find it really hard to be on meds. i noticed your remicade is at every 6 weeks right now. i had a friend (lucky guy) who was able to increase his duration to every 10 weeks and then eventually get off remicade with fecal transplant and SCD diet. granted, he's been in the clear for about 3 months on no meds so i can't say how long he'll stay in remission- hopefully forever. did you start getting symptoms before 8 weeks?

3491e51730101b18724dc57c86601173

(8395)

on January 26, 2013
at 08:34 PM

I think that this is absolutely the best chance you have of healing your gut and having your health restored. Definitely check out GAPS and SCD. Maybe you'll have something to teach your fellow medical professionals when this is all done.

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4 Answers

1
089dd41b18fbb95ebb5347cded708d98

(5635)

on January 26, 2013
at 05:20 AM

are you currently in remission right now? as a fellow IBDer, i would say keep doing the paleo diet but don't stop your meds unless they become ineffective. 6mp and remicade stopped working for me and i just tried humira with a very bad reaction. i've been doing paleo since aug 2012 but still haven't found remission. i followed the autoimmune diet for a few months and found that eggs and nightshades are hell for me. nuts might also be a problem as i'm not doing well right now.

i know the meds suck as well as all the side effects, but if they don't give you terrible problems, please stick with them. coming off of them and trying to get back on when your flare comes back usually doesn't work. i'm only saying this because i've seen it happen so many times. i was crushed when remicade stopped helping me and humira doesn't seem to do any good anyways.

1
3327924660b1e2f8f8fc4ca27fedf2b2

(2919)

on January 26, 2013
at 04:18 AM

Read Gut & Psychology Syndrome by Dr. Natasha Campbell-McBride.

She's doing amazing work reversing serious gut damage, primarily in children, in a UK clinic in Cambridge.

Have you ever had a history of disordered eating patterns, by any chance? (Anorexia, restriction, bulimia, or binge eating?)

1
E36cb992cf0a5eba8b97a359c15f38b3

on January 26, 2013
at 03:04 AM

Hi. I do not have Crohns, but you might be interested in this blog post over at Roost: http://www.roostblog.com/roost/the-core-of-it-all-our-story.html The author's husband has Crohns and has been able to wean off medication. You may also want to check out information about the Specific Carbohydrate Diet. There's some good information about which fruits and vegetables are helpful, which may not be, etc.

Note: I am not a medical professional. I just read a lot, and have had some similarly frustrating dealings with GI docs and GPs, among others.

0
Bd4418bbd47073aba6bf78bdde8a117a

on January 26, 2013
at 03:25 PM

Thanks for your help! I will check out the Roost post, and Roth,I have never had an eating disorder, spent my childhood years eating from my parents' farm, we were Paleo and didn't even know it!. As an adult, I have always been health conscious, even bragging that I had an iron gut and could eat anything I wanted. I had no GI symptoms, this truly started with mouth ulcers. My GI doc was as surprised as anybody to see the colon ulcerations and especially one so weak that it perforated on exam. I will check out the Gut and Pschology Syndrome as well. And Joanna, I am one of the fortunate few that has no apparent side effect from these meds, I just know they are poison and I so hate having to take them, but I assure you, I won't stop without medical supervision. I just don't want to be the only one that thinks this can be controlled by a healthy diet. And I understand diet alone may not be enough. Thanks so much for your help everybody!

089dd41b18fbb95ebb5347cded708d98

(5635)

on January 26, 2013
at 10:05 PM

sure, no problem, michele! i know it sucks thinking that we'll have to be on meds forever. i was totally all natural before i got this stupid disease and still find it really hard to be on meds. i noticed your remicade is at every 6 weeks right now. i had a friend (lucky guy) who was able to increase his duration to every 10 weeks and then eventually get off remicade with fecal transplant and SCD diet. granted, he's been in the clear for about 3 months on no meds so i can't say how long he'll stay in remission- hopefully forever. did you start getting symptoms before 8 weeks?

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