Nutrition/diet

This query was sent sent to me by a new member, @Faisal . Please offer your thoughst to help him:

Any chance you could help me with some diet info? Ive read a few threads on here about gluten free diets along with some supplements but they are like 5/6 years old. Is the gluten free diet still working for people? I also do not know how to start a new thread otherwise would have posted it for everyone to see

Hi all!

Thanks @JeffDC1 for posting this for me!

Any advice would be highly appreciated! I have just recently come out of hospital after a cholangitis flare up!

I want to change my diet but need some help, never been good at diets!

Thanks in advance

My son (with Chron’s & PSC) is doing well with Remicade and the SCD diet. From what I’ve learned so far, most people with IBD do much better while following an SCD diet. It’s worth looking into. Some people are able to control their IBD with diet alone even. And PSC tends to be controlled when the IBD/GI tact inflammation is controlled. -Lisa

Hello there,

My son has UC/PSC and he tries to stick to a Paleo diet. He’s on VSL#3, Meslamine, URSO, and CBD oil from Lazarus Naturals, along with tumeric and vitamin D.

This worked for a few years quite well. Unfortunately, Seth has been in a horrible flair since April and his liver enzymes are up in the 400’s , and recent scope showed inflammation throughout his whole colon. So we are onto the next stage and he’s going to get a biologic. His large bile ducts still are fine from the recent ultrasound(he has small-duct PSC)…he sees another new liver doctor next week to figure out what’s what, he’s lost like 30lbs.

I’m rambling on…but we’ll get back to his Paleo diet after this flair is under control, during the flairs my son sticks to the easy to digest foods, no veggies, fruit or nuts.

I hope that helps

Sincerely, Tina O

I was diagnosed with PSC small duct 16 years ago. I have had 3 ‘flares’ but otherwise am in good health. About 3 years ago, it was recommended by a nutritionist (not a doctor) that I try gluten free, and so I did. When I do slip in some gluten (by accident or deliberately) I now get pains in my stomach area and some digestive issues for a couple hours, so I know it isn’t good for me. I am not celiac BTW. Otherwise, my diet is heavy vegetables, fruit and limited protein, (fish and red meat, no pork). I do eat GF baked goods that I bake, so eat sugar, probably too much. Been on Urso for 15 years, and take vitamins B, D &E. No IBD.

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Thank you all for replying! Highly appreciate it!

I think I will go down the gluten free route and cut out sugars and low dairy

Thanks again to everyone👍

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Dear Faisal,
We have had a good discussion here: New UC/PSC patient seeking guidance
Good luck, take care, and stay strong.

Hello, let me say I only speak from my experience.For diet all processed type food was out, fresh foods, vegetables,meat,fish and much fruit. Pure butter none of the tastes like butter stuff.
Understand during an attack food is last thing on your mind lol but drink, my preference was tea good old fashioned builders tea.no coffee.
Your body’s a temple keep it clean :wink:.
Balance meals and don’t overeat !! Good luck .

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I am doing no-gluten, and here is why. I started looking into the causes of autoimmune disease, and gluten was listed as one possible cause. Here is a discussion of the relation: https://www.huffpost.com/entry/4-reasons-gluten-and-autoimmune-disease-dont-mix_b_599c7abfe4b0521e90cfb5a3
And another discussion:
https://www.healthline.com/nutrition/leaky-gut-diet#3

Thank you so much guys!

I’ve had PSC since 2006. I also have psoriasis and had vitiligo at one time. Early on, I ate whatever I wanted. Over the years, I’ve come to realize what makes me feel like crap. Anything processed and too much sugar leads to lots of pruritus (itching). Even an 8oz Pepsi at lunch, will lead to an itchy, sleepless night.
In short, I agree with the others. Eat natural food, low in cholesterol and drink lots of water.

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TR, welcome back!