Looking for success stories and opinions about dieting as a treatment for crohns.

[Julian Sam]

Heeey my fellow chronies, just wondering if anyone has had much luck with the ketosis diet or any specifc diet, and has come off medication, or stayed on medication while dieting? I've been in remission for 17 months now on remicade symptom free, and looking to improve my diet while on remicade, and maybe get off remicade eventually.

i would highly appreciated those who comment.

Kind regards.

 

[December's flower]

I have never tried to follow a certain diet for my Crohn's.
In my opinion those who might benefit from a specific diet would be patients with structures , kids on liquid diet or people who are in hospital in a severe flare.
I strongly believe though that an equilibrate diet and a healthy lifestyle is absolutely necessary for every chronic illness.
Try adding different fruits and vegetables in your diet , exercise ,forget any worries quit smoking if you do , eliminate alcohol.
Hope you ll continue to stay in a deep remission for a really long time

 

[Guerrero]

You are right to look for improvement in your diet. Hope someone can share experiences and advices.
In my case I only experienced very strict ones like liquid diet with modulen and it's more suitable for few months in case of flare.

However I think you can't substitute medication like remicade with any diet,and it would be a big mistake to do it.

 

[SN8888]

In my opinion/experience, there are a few ways food affects GI trouble:

1. high fiber/irritating food - Raw fruits and veggies, nuts, seeds, maybe alcohol and very spicy-hot things will irritate inflamed intestines and cause some trouble. The cause and effect is pretty obvious.

2. Starch/carbs - this one is a little controversial. According to those who follow the specific carbohydrate diet (and similar), high carb diet (starch, disaccharides, etc) can change the population of bacteria in your gut, increasing the numbers of bacteria/microbes that your immune system is reacting to. The cause and effect relationship would be harder to recognize since it could takes weeks of eating too much starch to shift the population of gut bacteria to something that would cause trouble. Similarly, it could take a long time on a low-carb diet before you see any benefit.

3. Immune-reactive food - long term GI trouble may disrupt the complicated relationship between your immune system and intestinal contents. Some people get tested (ie - Entero labs) for IgA antibodies against things like gluten (wheat), casein (dairy) and certain proteins in soy, eggs, oats, chicken....lots of other foods. It probably is not the cause of Crohn's, but if your body reacts to these things, then you won't feel good eating them.

4. FODMAPs - A hyper-sensitive gut will not like anything that tends to drawn in fluid or produce gas (that stretching/inflating of the intestines will be painful or trigger intestinal trouble). This seems to be especially relevant for IBS. A low FODMAPs diet avoids apples, onions and a long specific list of fruits and vegetables.

....so, I guess what I'm trying to say is that if you decide to follow the Specific Carbohydrate diet (like #2 above), you have to also keep in mind #3 above. SCD allows dairy products, but if you're having a reaction to casein you may not notice the benefit of the SCD. You'll have to consider all of that.

 

[The Real MC]

The perplexing thing about Crohns is that every CD patient has different food triggers, so no one diet works for every CD patient.

Case of point - many CD patients cannot consume dairy foods, yet they do not bother me.

I isolated the triggers foods and eliminated them from my diet. It was a painful process but worth the effort. I've kept CD in remission by staying diligent to my diet.

 

[Julian Sam]

Im glad you've been able to achieve remission by being diligent with your diet. My dietitian decided i try the keto diet, because alot of people with IBD have had success with it, and i will see how i progress with that. Were you on medication when you were trying to figure out your trigger foods? How did you know what your trigger foods were? And are your scopes clean/inflammation levels low?

kind regards

 

[The Real MC]

Im glad you've been able to achieve remission by being diligent with your diet. My dietitian decided i try the keto diet, because alot of people with IBD have had success with it, and i will see how i progress with that. Were you on medication when you were trying to figure out your trigger foods? How did you know what your trigger foods were? And are your scopes clean/inflammation levels low?

kind regards

Only medication was Pentasa.

Figuring out trigger foods involves recognizing patterns and keeping a log. For instance, if I ate the same lunch with the exception of dessert and I had abdominal cramps following one of those lunches then something in the dessert was a trigger. That's how you isolate triggers - you recognize patterns. You have to abstract it down to a core food and/or how it is prepared. For instance, the dessert that triggered contained almonds. I also had triggers from peanuts, cashews, etc so I abstracted it down to nuts. Nuts out of the jar would trigger cramps but if they are cooked they don't bother me. So I abstracted it further to raw nuts.

Another example: in my case some spicy processed meats were a trigger, some weren't. I narrowed the trigger foods to breakfast sausage, spicy processed lunch meats, pepperoni. But I have yet to encounter a pizza sausage that was a trigger.

Sometimes I can tolerate a moderate amount of a trigger food without cramps.

I had pretty much figured out the trigger foods by 2015. I'm not afraid to experiment, but I do keep in mind my schedule a few days in advance so I don't miss something important.

No two CD patients have the same trigger foods, but I can say that anyone who has had resection surgery should be real careful of spicy condiments and foods, which can irritate the junctions of the resection and potentially cause a blockage.

Last scope was in 2016 and inflammation was so absent that my GI set my next one out ten years instead of five.

 

[wildbill_52280]

The good bacteria in your gut ferment fiber, so it would be a bad idea to cut out all carbs like ketogenic diet suggests, if you get fiber from low carb vegetables like broccolli and cauliflower maybe that's fine otherwise whole grains are very good for the gi system, corn and rice being the only possibly exception according to the specific carbohydrate diet, which i highly recommend learning more about but the book breaking the vicious cycle, this woman treated her daughters U.C. with the diet which was developed by scientists, but underutilized by the current medical industry.

 

[wildbill_52280]

Only medication was Pentasa.

Figuring out trigger foods involves recognizing patterns and keeping a log. For instance, if I ate the same lunch with the exception of dessert and I had abdominal cramps following one of those lunches then something in the dessert was a trigger. That's how you isolate triggers - you recognize patterns. You have to abstract it down to a core food and/or how it is prepared. For instance, the dessert that triggered contained almonds. I also had triggers from peanuts, cashews, etc so I abstracted it down to nuts. Nuts out of the jar would trigger cramps but if they are cooked they don't bother me. So I abstracted it further to raw nuts.

Another example: in my case some spicy processed meats were a trigger, some weren't. I narrowed the trigger foods to breakfast sausage, spicy processed lunch meats, pepperoni. But I have yet to encounter a pizza sausage that was a trigger.

Sometimes I can tolerate a moderate amount of a trigger food without cramps.

I had pretty much figured out the trigger foods by 2015. I'm not afraid to experiment, but I do keep in mind my schedule a few days in advance so I don't miss something important.

No two CD patients have the same trigger foods, but I can say that anyone who has had resection surgery should be real careful of spicy condiments and foods, which can irritate the junctions of the resection and potentially cause a blockage.

Last scope was in 2016 and inflammation was so absent that my GI set my next one out ten years instead of five.

I also keep a journal! I generally use the concepts of an elimination diet, and that is following a very strict pattern of a simple diet of only a few foods that you believe are the safest and slowly introduce foods to judge how they affect my body.

This can be a little too restrictive at times so I also created an everything day once every week or two, so I'm not really missing too much, on this day i will eat a variety of things I know are healthy but I'm not too sure if i can tolerate them long term yet.

I have made many discoveries like this and learned that some nuts have toxins/fungus or bacteria in them and certain pistachios brands are not tolerable, and many other things of that nature. I try to make a control period for which i will compare and experimentation period with, to judge if there are any improvements and how that new variable is helping or hurting me, always watching out for coincidences so I try to apply good scientific principles when developing my belief systems for the determination of reliable knowledge. Without a well designed experiment and notes/measurements it's easy to deceive oneself, and come to conclusions which are unsupported by the evidence. Even with all this effort, i have made some mistakes!

 

[RenLPC]

I appreciate your question, I think everyone with a digestive disorder needs to take this into account. I also appreciate the comments that everyone with CD is different and different things will trigger different people, so keeping some sort of food journal to determine what your triggers are is necessary.

I like to stick to the basic rule that we need to be eating foods that are natural, whole, and minimally processed with no artificial ingredients. Start there, then work toward distilling this down into what actually helps your condition versus what is making you sick.

I've had the most positive results from eating whole grains (except corn), low dairy, fresh fruits (especially bananas), a ton of roasted or steamed veggies, and chicken. Spicy foods, nuts, and seeds do not bother me.

I have to avoid ground meat and any cased meat, eggs, fried foods, corn/popcorn, artificial preservatives/flavors, and milk.

It's worth the time and effort. I went off my meds a long time ago and have never looked back, most recent colonoscopy showed good improvement. I'm not saying that anyone should just stop taking their meds, but I think the idea that you'd like to improve your nutrition and possibly decrease or discontinue meds in the future is worth exploration.

 

[Julian Sam]

I appreciate your question, I think everyone with a digestive disorder needs to take this into account. I also appreciate the comments that everyone with CD is different and different things will trigger different people, so keeping some sort of food journal to determine what your triggers are is necessary.

I like to stick to the basic rule that we need to be eating foods that are natural, whole, and minimally processed with no artificial ingredients. Start there, then work toward distilling this down into what actually helps your condition versus what is making you sick.

I've had the most positive results from eating whole grains (except corn), low dairy, fresh fruits (especially bananas), a ton of roasted or steamed veggies, and chicken. Spicy foods, nuts, and seeds do not bother me.

I have to avoid ground meat and any cased meat, eggs, fried foods, corn/popcorn, artificial preservatives/flavors, and milk.

It's worth the time and effort. I went off my meds a long time ago and have never looked back, most recent colonoscopy showed good improvement. I'm not saying that anyone should just stop taking their meds, but I think the idea that you'd like to improve your nutrition and possibly decrease or discontinue meds in the future is worth exploration.

Thats great news, thats awesome that you found relief through diet. One question im curious how am i suppose to find my trigger foods when im in remission with no symptoms, were you on medication at the time i eleminating foods? Because im starting the keto diet soon and im curious how am i suppose to know when the diet is working if remicade if masking all my sypmtoms

Kind regards

 

[itsabumdeal]

Diagnosed with CD 20 yrs ago and had bowel resection. Had no acute symptoms at all until 3 yrs ago when I started getting major issues with abscesses and fistula/perianal disease.

Went through 12 months of EAUs, setons, antibiotics, packing and wound dressing, weight loss, sepsis etc etc It was a nightmare as anyone who has gone through that knows. Eventually had laying open op and put on humira. Health improved but continued discomfort and drainage from fistula - prognosis from doctors was maintenance and get on with life if lucky. All MRIs in 12 months post op showed no shrinkage of fistula.

Then 6 months ago I noticed symptoms had worsened more discharge, aches pains, tiredness etc. And also knew my dairy intake had massively increased (milk based protein shakes, greek yoghurt etc) as I was trying to build up after losing 12kg whilst ill. So having noted this I decided to try the reverse and cut all dairy out - checking labels on everything. Within 4 days discharge stopped, pain/swelling reduced and generally felt more energised and less joint/muscle issues Id always sporadically been getting during last 3 years. Since consciously removing dairy I have also reduced caffeine and red meat and there's been a huge change. The last MRI (3 months after) the changes to diet showed the fistula reduced in size. The doctors had me in for another EAU as they felt discharge had stopped due to damaged seton. They replaced this and still no discharge.... They are now talking in terms of remission/total healing.

Granted I've always been on the humira drugs regimen through this period but I'd been on that 18 monthsor so prior with no huge change - yet changes came within 4 days of amending diet. Not crying miracle cure but I'm convinced those things were pouring petrol on to the fire...my mother subsequently told me I coudn't take milk as a baby which I did not know about before I mentioned I'd stopped dairy.

Removing dairy, removing caffeine, reducing red meat and alcohol has changed everything overnight.

I'm now convinced having been 2 days from intensive care (sepsis infection) at one point, I will never have issues with this disease again.

 

[hikerneil]

I had extremely active case of Crohn's when I was in my teens and early 20's. It was horrible. I had numerous treatments of steroids in an effort to control my symptoms. Eventually I had bowel resection surgery and my symptoms subsided. I have been in remission for 32 years (surgery was in 1986). I am currently having colonoscopies done every few years. My GI doctor sees some mild signs of Crohn's type inflammation, but I am experiencing no physical symptoms.

I know and realize that I am extremely lucky, but I am also extremely careful with my plan to control the disease and the return of symptoms. My efforts include:

DIETARY:
I watch what I eat. Most importantly - I limit foods with spices and preservatives. If I eat foods that are high in either I know that I will experience abdominal pain, bloating, and diarrhea.
I also cannot and do not eat much beef, especially steak. If I have steak 2 nights in a row, I can guarantee I will have issues.
Milk and dairy don't seem to bother me, but I am considering switching to some alternative for my morning cereal, as I read so much about dairy products. Maybe that would help clear up the issues they see in my colonoscopies.

EXERCISE:
I maintain an extremely physical active lifestyle. I have heard theories that it is possible to produce levels of endorphins that reduce inflammation in your gut. This makes sense to me, I don't care if others agree or disagree with this theory. Something is working for me. My exercise routine = bike 50 miles every other day, walk 8-10 miles on the other days. 0 or 1 day off per week. It amounts to about 3.5 to 4 hours of hard exercise per day, every day. I am 58 years old.

My dietary and exercise regimen is detailed above for informational purposes. It may or may not work for anyone else. It works for me......

 

[RenLPC]

Thats great news, thats awesome that you found relief through diet. One question im curious how am i suppose to find my trigger foods when im in remission with no symptoms, were you on medication at the time i eleminating foods? Because im starting the keto diet soon and im curious how am i suppose to know when the diet is working if remicade if masking all my sypmtoms

Kind regards

That's a good question. I guess you would know if you've found a trigger food if you start to see negative symptoms again. Definitely keep a journal and track bowel movements and symptoms so you can match this up and see any patterns over time.

No, I was not on any medications at the time I made my diet changes. Not saying this is the right way to do it, but it was an act of frustration and rebellion when I stopped taking my 11 pills a day because it didn't provide me any symptom relief at all. However, I was still eating like crap at that time so those meds had a lot to contend with.

But, it turns out I'm glad I had that irresponsible moment of frustration because it turned out to work in my favor to help push me to start making better food choices. It's been 10 years since my surgery, I just saw my GI doc yesterday and he continues to recommend that I just keep doing what I'm doing.

I'm interested to hear how the diet changes turn out, good luck.