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Vegan on Crohn's Disease Exclusion Diet / Tofu

Hello!

I was referencing this old thread https://crohnsforum.com/threads/plant-based-diets-in-crohns-disease.82312/ because I also came across these studies which matched my line of thinking before I had the need to research such things related to Crohn's. I thought I'd start a new one since it's several years old by now. My 15 y/o son was recently diagnosed with Crohn's and has been put on the Crohn's Disease Elimination Diet which I feel just panders to the standard American. Fortunately vegan formula shakes exist now so he's been able to stick to his ethics.

Let me start off by saying I am not interested in non-vegans opinions, I'm strictly looking for other plant-based folks' support and suggestions. 100% vegan foods only. One of the criticisms in the other thread of the studies was that a vegetarian dr. was promoting the benefits of his vegetarian diet as if almost every other study not promoting veg-diets isn't written by non-vegs. It's probably the worst argument out there.

I was non-veg for 36 years and went vegan 8 years ago strictly because of overwhelming science showing the preventative and healing benefits of an exclusive whole foods plant-based diet.

My son has been vegan for 6 years. I know you're probably wondering if veganism was so good then why was my son so bad in the first place...because of a variety of reasons, we ended up consistently eating at restaurants and take-out food sometimes 5 days a week, not proud, where he'd specifically go for the spiciest foods, "Indian hot" was his preference. I'm certain this is what really kicked things off for him. And then his breakfasts and lunch were a typical teenager diet of either nothing or nutritionally subpar foods. He was far from "whole foods", there's a lot of vegan junk food out there these days no doubt. My son was also neglecting to tell us everything that was going on until things were bad.

While we were waiting for his first labs, colonoscopy, and diagnosis, I put him on a bland diet that consisted of almost daily miso soup, baked simple tofu (minimal amounts of Bragg's), kombucha, turmeric, chaga tea, and lion's mane mushrooms specifically for their beneficial and healing properties, along with simple things like lower fiber veg, rice, bananas, etc. This is when his diarrhea stopped and energy improved, until he started Cipro which threw everything out of whack again. The soy was not bothering him, at least from what we could see but not sure how his blood and fecal counts were changing.

His dr. assigned nutritionist has been worthless to us. He finished Phase 1 of the CDED diet with excellent improvements in his labs. We are in phase 2 of the CDED and things are getting a little less stable from Phase 1 but possibly leveling out again. I'm sure it's because he went from practically 0 fiber to eating beans, quinoa, hummus, and a lot more veg rather quickly. I just got his dr to okay miso and seaweed but she's still saying no to tofu. My gut says it's not harmful and a lower fiber, higher protein option would be beneficial to him in place of beans sometimes, but I'm choosing my battles with his dr. for now.

Is anyone here following an exclusive vegan diet and having good results? Does it include tofu? Did you do a vegan version of the Crohn's Disease Exclusion Diet? I know foods effect everyone differently with Crohn's, and it's trial and error, just curious what other's experience has been.
 
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Hi, although I am not familiar with the diets, I am surprised that tofu is off limits. I find that tofu (organic) is one of the safest and easiet foods to digest. I know that some soy products can be processed but tofu is not.... I'm curious to what others say.
 

crohnsinct

Well-known member
Hmmm o.k. ex vegan here and my daughter was vegan and we found CDED very tolerable for CDED BUT she hated Tofu so I can't remember if and why is was or wasn't included. We are now on SCD and it definitely is not allowed and definitely much harder than CDED for vegans as there is no grains allowed so to get enough calories you have to eat animal products. The two are related so I would believe soy isn't allowed.

You really need a good registered dietician because I don't remember beans quinoa and hummus being allowed in phase 2 but let me check.

I think it is great that you are exploring diet and I do believe it is a contributing factor BUT there are many families here who have multiple children and only 1 or 2 have Crohn's and their other kids do not. So it is a combination of factors.

Also, as I remember CDED starts with 100% EEN for like 6 weeks and then moves to about 50% food. What most parents here have experienced is that as soon as food is introduced, without a maintenance med, inflammation returns. So it might just be food and not a particular food. Is he on a maintenance med? When did he start? Perhaps it hasn't fully kicked in yet?
 

crohnsinct

Well-known member
OK. I just went back and checked our guidelines. Our center requires 6 weeks EEN but I don't think everyone else does so in my mind the 50% EEN and 50% food in the official phase 1 I always considered phase 2 so it does look like you could add beans, quinoa and chick peas.

Where is your son's disease mostly concentrated? FWIW fro our experience the colon doesn't respond as well to dietary therapy as the small bowel. this doesn't mean it does't respond, just in general the colon makes it more difficult.

I feel for the kids when they have to give up their favorite foods, especially when they don't feel like they harmed them. My poor Italian daughter has had to give up most cheese and pasta and bread....she says she mine as well lick cardboard 😂 But I think for the first 6 months at least you have to give it a good ole college try to give it the best chance of success. We think of it this way, you wouldn't accept a drug that is typically dosed everyday and say, "yeah but I will only do it 6 days a week" and expect. it to work. At the 6 month mark if you achieve remission, it is a little easier to add an "illegal" food and especially on CDED as they have 4 cheat meals built into every week in the maintenance phase.

Even in. oe of my daughters cases she has been on SCD for over a year and it isn't really the silver bullet we hoped it would be anther doc has decided to allow white rice so even if a diet doesn't work 100%you might still be able to liberalize and keep the good parts.

I still stand on my statement that you need a good registered dietician. Ours looked up restaurants near my daughter's college and helped her find items on the menu's that she could order. When she turned 21 she helped her find an SCD legal drink she could order! Both of my girls LOVE their RD and prefer asking her questions than the GI.
 
Hello!

I was referencing this old thread https://crohnsforum.com/threads/plant-based-diets-in-crohns-disease.82312/ because I also came across these studies which matched my line of thinking before I had the need to research such things related to Crohn's. I thought I'd start a new one since it's several years old by now. My 15 y/o son was recently diagnosed with Crohn's and has been put on the Crohn's Disease Elimination Diet which I feel just panders to the standard American. Fortunately vegan formula shakes exist now so he's been able to stick to his ethics.

Let me start off by saying I am not interested in non-vegans opinions, I'm strictly looking for other plant-based folks' support and suggestions. 100% vegan foods only. One of the criticisms in the other thread of the studies was that a vegetarian dr. was promoting the benefits of his vegetarian diet as if almost every other study not promoting veg-diets isn't written by non-vegs. It's probably the worst argument out there.

I was non-veg for 36 years and went vegan 8 years ago strictly because of overwhelming science showing the preventative and healing benefits of an exclusive whole foods plant-based diet.

My son has been vegan for 6 years. I know you're probably wondering if veganism was so good then why was my son so bad in the first place...because of a variety of reasons, we ended up consistently eating at restaurants and take-out food sometimes 5 days a week, not proud, where he'd specifically go for the spiciest foods, "Indian hot" was his preference. I'm certain this is what really kicked things off for him. And then his breakfasts and lunch were a typical teenager diet of either nothing or nutritionally subpar foods. He was far from "whole foods", there's a lot of vegan junk food out there these days no doubt. My son was also neglecting to tell us everything that was going on until things were bad.

While we were waiting for his first labs, colonoscopy, and diagnosis, I put him on a bland diet that consisted of almost daily miso soup, baked simple tofu (minimal amounts of Bragg's), kombucha, turmeric, chaga tea, and lion's mane mushrooms specifically for their beneficial and healing properties, along with simple things like lower fiber veg, rice, bananas, etc. This is when his diarrhea stopped and energy improved, until he started Cipro which threw everything out of whack again. The soy was not bothering him, at least from what we could see but not sure how his blood and fecal counts were changing.

His dr. assigned nutritionist has been worthless to us. He finished Phase 1 of the CDED diet with excellent improvements in his labs. We are in phase 2 of the CDED and things are getting a little less stable from Phase 1 but possibly leveling out again. I'm sure it's because he went from practically 0 fiber to eating beans, quinoa, hummus, and a lot more veg rather quickly. I just got his dr to okay miso and seaweed but she's still saying no to tofu. My gut says it's not harmful and a lower fiber, higher protein option would be beneficial to him in place of beans sometimes, but I'm choosing my battles with his dr. for now.

Is anyone here following an exclusive vegan diet and having good results? Does it include tofu? Did you do a vegan version of the Crohn's Disease Exclusion Diet? I know foods effect everyone differently with Crohn's, and it's trial and error, just curious what other's experience has been.
Hello, nice to meet you online as a vegan.
You seem to have a lot of knowledge about a food exclusion diet for Crohn's. I don't eat meat anymore having watched documentaries about intensive farming. I think if you have slow transit of food in the bowel/gut, it can cause bacteria you don't need. London is full of restaurants and take-aways and I contracted e-coli on holiday abroad and food poisoning in London so I don't order in anymore. I cook at home which can be repetitive, boring and tiring but at least it won't put me in hospital. I love tofu, spinach, beans, lentils, mushrooms and herbal teas. I find soya milk gives me gas and stomach ache. If you have any vegan dishes for home cooks, please share some here. Keep posting. :geek:
 
Hi guys,

I have had Crohn's disease since 2011, was on Azaithoprine for about 7 years until I decided to come of it myself. Last year things got worse and I felt pain again, thus MRI scan showed inflammation again so back I went on Azaithoprine, at the same time that I had COVID 19. Due to COVID I was never physically seen by my GI just over the telephone now.

Anyway don't want to ramble on but a close friend sent me a link recently with a study that showed a plant based diet has shown to put patients in remission. These studies were done in Japan and can be seen online. I did my own research and found a GI in UK who shows scientific research proving that SOME patients have had success with a plant based diet. One night I was searching the internet and I found a fellow sufferer who claims to have healed his UC and has testimonials of fellow Crohn's disease sufferers who have healed/remission their Crohn's disease by following his diet. Before we get with the conspiracy theories - he does not ask for money at all as all the information can be found on his youtube account.

At first I was sceptical but I'm tired of taking Azaithoprine and still being in pain (fearful of the long term effects too) - my GI said I shouldn't change if its working, yet whenever I go to the toilet I am in pain for hours and hours until it wears off. So I followed his diet plan, my calprotectin levels before this diet were around 80-100 (which isn't high considering what I have seen in this forum), after 4 weeks on the diet, my local GP doctor did a calprotectin test and it was on level 5 - blood levels all normal. My bowel movements are normal, I am no longer in pain. They suggest to keep the diet for roughly 5-6 months and have to be very strict. Once you finish the diet, you will need to remain on a whole food plant based diet. He himself has been 8 years + on remission (healed as he says). Fellow people that have tried it and give testimonials on his channel have been on remission for years and years. I am on week 6 at the moment and still going strong but the diet is tough as I have given up everything. I was told by my GI that if i eat fibre it will destroy my bowels...yet it only has improved it.

What I am trying to conclude is that I strongly believe that a balance of a diet, sleep, removing stress and adding exercise can help us with this horrible disease we have.
 
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