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Autoimmune protocol??

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Ulcerative Colitis
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Posted 9/4/2015 3:05 PM (GMT 0)
Hi all, I am new to the group, diagnosed last November and essentially have been flaring ever since. Started off with prednisone which was not strong enough or long enough, so helped for a couple weeks but then bleeding came back. Have been on salofalk all along and started azathioprine in March with another more intense round of prednisone. Prednisone seemed to help for a while but won't ever take it again because of how horrible I felt when I came off of it. Anyways, still bleeding and have mucus now. Currently taking 5gm of salofalk a day and 100mg aza.

What my real question is....,has anyone hear heard of the autoimmune protocol diet? And has anyone tried it? I keep seeing hear about a low residue diet and the AIP pretty much seems very opposite of that. I have a book about it and it is apparently a very good diet/lifestyle change for people with an autoimmune disease. That being said it is very restrictive and not easy to follow. Any feedback from you guys if you have tried/heard about/ had success with this diet would be amazing as this is what I am considering for my next step as it seems my mess aren't working all that well!

Thanks
Julie
Posted 9/4/2015 4:50 PM (GMT 0)
Julie, I'd seriously consider biologics (remicade, humira, simponi, or entvyio) in your situation. You're welcome to try diets, some swear by them, others have no impovement in their uc symptoms (like me). I was in a similar situation to you, and remicade has been the only uc medication to get me into remission, when all else failed. Good luck,
Posted 9/4/2015 5:04 PM (GMT 0)
Julie,

I have tried the autoimmune protocol during flares, and I think there are a lot of good things about it that were helpful to me. Taking out nightshades when I am inflamed was a game changer and really helped! I follow a paleo diet otherwise (plus white rice and white potatoes) and ultimately found that the rest of the AI protocol was harder to maintain than the relief it gave me warranted.

Diet has been a key part in managing my UC, in conjunction with meds. In my experience, while diet greatly helps and keeps me out of flares, once I flare diet generally has not been able to get me back into remission alone. I concur with iPoop that it may be time to look at other medical options. Good luck and please keep us posted!

Caroline
Posted 9/4/2015 5:35 PM (GMT 0)
I say go for it. Here's a few tips and my perspective. I started the specific carbohydrate diet 2-3 months ago and while I can't really judge on how it affects my UC, it gave me a huge mental boost and more consistent energy throughout the day. This was beneficial because now I know whether or not my body is actually tired vs. just feeling groggy due to a poor diet or the ups and downs of a high sugar/high carb diet. I've also learned a lot about nutrition and learned that a lot of people in my life have digestive issues that I never knew about. I think the AI protocol can do these same things for you.

This is also a good time to start since summer barbeque season is coming to an end...social gatherings are tough on a restricted diet. Just as a warning, one side effect of being on a diet is you will be forced to talk about WHY you're on the diet ALL THE TIME so be prepared to tell everyone you meet that you have ulcerative colitis. If you have a few pounds to lose its easier to let others assume its for weight loss. It gets tiresome to talk about and sometimes I don't feel like explaining it to people...but I'm a bad liar and can't come up with a good lie when asked. You may also sense that people are a little annoyed that you don't eat what they cook, like your disease is a burden on them somehow. Let me know if you get started, I'm always interested in how others are responding to diet changes.

I agree with the others that say biologics may be your next step. But if you're not ready, give the diet a try but don't expect it to be a magic bullet...more like a really good supplement to your medications.
Posted 9/4/2015 7:05 PM (GMT 0)
i didnt do well on it because a lot of the foods are bad for me (high fiber) and most of the ones that are eliminated are totally fine. it is not an IBD diet like low residue diets are. fiber hurts for a reason during flares so i do no fiber when my flare is bad.
Posted 9/5/2015 12:11 AM (GMT 0)
Thanks for the input all! I think I am going to give it a try....my husband is willing to do it with me so that will help make it more manageable. I understand most needing to be on a low residue diet but I have never had any pain and not really bad in the bloating department either.....I have always just had significant bleeding and mucus. I will keep updating on how it goes once I start!
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