Question for all with safe or dangerous foods

Reading around, a lot of discussion on crohns is about what foods are safe and aren't safe for each person but I don't quite understand what people are recording here.

My doctor and information online suggested that food cannot cause a flare but can make it uncomfortable when you have one - but when you flare the steroids remove symptoms until you are back in remission. So when is it that you can record which foods are bad in your case? Or is it just for people with permanently active CD?

I've been keeping an indepth food diary but im not exactly sure how it will come to be of use - so any help is appreciated.

If you are having symptoms after you have had a certain food , I would count it as suspicious for aggravating the Crohns

I am in deep remission. There are still foods that I can't have. Things like coffee, chocolate, nitrates, too much fat or sugar will have me running to the bathroom. As long as I stay away from my "triggers", I have no symptoms. For a lot of people, caffeine, nicotine and alcohol are triggers. You just have to figure out what yours are, or if you're lucky, you don't have any.

Tuff said:

I am in deep remission. There are still foods that I can't have. Things like coffee, chocolate, nitrates, too much fat or sugar will have me running to the bathroom. As long as I stay away from my "triggers", I have no symptoms. For a lot of people, caffeine, nicotine and alcohol are triggers. You just have to figure out what yours are, or if you're lucky, you don't have any.

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So having these for you doesn't cause inflammation or a flare but still causes certain symptoms? Would it be a case that if you continued to have these foods it would develop into a full blown attack or is it more just that effects of crohns have left your gut slightly less adept at handling these foods?

The only food i had issue with was spicy food, which caused abdominal pain- but with steroids that effect seems to have slowly gone. Do you imagine it would still be wise to avoid this if, god willing, i go into remission?

I highly disagree with doctors on this.

Trigger foods will cause a flare.

In my observations there's two types of food sensitivites:
-Trigger foods that will increase / prompt a flare
-Sensitive foods that you will not be able to eat on a flare but will when in remission. These are usually fiberous foods, heavy proteins and the like that are difficult to digest under inflammatory conditions.

I think the most likely explanation given what we know about Crohn's is that the balance of your intestinal bacteria is upset, and you rely on those bacteria to digest certain food types. If you start losing those bacteria you lose the associated food type and the undigested food causes a reaction in the gut.

Likewise, the pathogenic bacteria feed on certain foods, and eating those foods can prompt growth spikes. Foods like maltodextrin have been linked to increased growth of AIEC in vitro.

Doctors continue to preach this dangerous info despite studies linking certain diets to high remission rates.

I manually add my own maltodextrin to my protein shakes, maybe that's something I should stop....

How do you track a trigger food? I've only had one flare due to being newly affected - but it came on very slowly over a year, there's no way I'd be able to focus down to one food or even several. Is it only possible when a flare erupts quickly?

I've stopped eating gluten as prior to diagnosis i suspected i might have just become coeliac - but when i reintroduce it I get sores in my mouth and nerve issues. So if i enter remission would you advise keeping away from it permanently? I thought potentially i was just incapable of having it temporarily whilst my small intestine was weakened (gluten getting through the membrane undigested or something) and i would be fine in a few months - but i absolutely wont have it if it will bring about a flare.

Doctors say foods don't make a difference because none of them have Crohn's and feel the aftereffects of eating a trigger food. Doctors brush off the topic because it is a hard one to research due to the individual nature of this disease and the near impossibility of having a true double-blind type study of diets impact on real humans with Crohn's. There is not a good mouse model of Crohn's and mice are not humans so thus there is limited correlation.

I agree with InstantCoffee. For me there are true trigger foods and then there are those that give me IBS symptoms. If I have enough of the ones that give me IBS symptoms that could trigger a flare. It's almost like a balance-when I feel well and have less inflammation then I can eat more of the problem foods. When I am stressed/have inflammation then I have to eat really clean or a problem food could tip the scale to a flare. These foods seem to be dose dependent on my stress level and health.

Currently I try to eat as clean as possible. I eat for my microbiome-what foods are going to feed/promote the beneficial bacteria and yeast in my GI tract. I think if I can build these up then I'll eventually be able to digest some of my IBS problem foods(like cruciferous veggies, onions, garlic) better and they won't give me symptoms. I've read it can take a long time(years) to shift the microbiome.

For me it seems additives/preservatives promote flares while food "triggers" cause more IBS.

I have learned, that everything that is rather soft and easy to digest as well as easily absorbable works best, both in terms of not worsening symptoms and staying well nourished. I also eat lots of cooked vegetables for lunch and dinner and some fruit for breakfast (trial and error what works best), a source of animal protein and healthy fats in each of my meals. Seeing my nutritionist regularly is so helpful for me, maybe that's something for you as well.

Could it be that certain foods worsen your symptoms, causing you stress - the stress then being the direct cause of flares?

But if you don't mind me asking are you permanently flared then - to be able to have food worsen symptoms? Because as I understand it takes a while to go from remission to a flare and it would be hard to attribute something that takes weeks/months to build up, to a particular food you have eaten in that period. I'm new to the whole disease, so if someone can go from fine to flare in a day that seems to make more sense with regards to problem foods.

Anonymous77 said:

Could it be that certain foods worsen your symptoms, causing you stress - the stress then being the direct cause of flares?

But if you don't mind me asking are you permanently flared then - to be able to have food worsen symptoms? Because as I understand it takes a while to go from remission to a flare and it would be hard to attribute something that takes weeks/months to build up, to a particular food you have eaten in that period. I'm new to the whole disease, so if someone can go from fine to flare in a day that seems to make more sense with regards to problem foods.

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I can go from fine to a flare in a day. Also if I'm simmering on the edge of a flare then a food trigger or stress can push me over. As for stress-it is usually stress due to job/life and anxiety producing situations that worsen symptoms.

Anonymous77 said:

So having these for you doesn't cause inflammation or a flare but still causes certain symptoms? Would it be a case that if you continued to have these foods it would develop into a full blown attack or is it more just that effects of crohns have left your gut slightly less adept at handling these foods?

The only food i had issue with was spicy food, which caused abdominal pain- but with steroids that effect seems to have slowly gone. Do you imagine it would still be wise to avoid this if, god willing, i go into remission?

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I think my issues also have to do with scar tissue. I had my last endoscopy without anesthetic, and I could see areas of white, probably where the ulcers had healed up. I still do better with a low residue diet. As soon as I add fiber, I start bloating up and getting gassy. Maybe all my good bacteria are dead because I've been on antibiotics for so long. I do take probiotics.
Once in remission, you could do an elimination diet, to see if spices are still an issue. I've had food allergies for years. http://www.mayoclinic.org/diseases-conditions/food-allergy/basics/tests-diagnosis/CON-20019293

Ok that makes the whole situation clearer to me - when you had your first run in with crohns was the flare just as fast? Or has it increased in speed and severity? I'd like to know what i have ahead of me....

Tuff said:

I think my issues also have to do with scar tissue. I had my last endoscopy without anesthetic, and I could see areas of white, probably where the ulcers had healed up. I still do better with a low residue diet. As soon as I add fiber, I start bloating up and getting gassy. Maybe all my good bacteria are dead because I've been on antibiotics for so long. I do take probiotics.

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Have you considered the fecal transplants they can do, if you believe a lack of certain bacteria could be your issue?

Anonymous77 said:

Have you considered the fecal transplants they can do, if you believe a lack of certain bacteria could be your issue?

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Since I'm in remission, I don't think so. I'm not sure if it's even allowed in Canada yet. Hopefully the probiotics will do the trick.

Tuff said:

Since I'm in remission, I don't think so. I'm not sure if it's even allowed in Canada yet. Hopefully the probiotics will do the trick.

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When eating high-fibre foods - are they just a grievance or do you suspect that if you continued to eat them you would flare?

Anonymous77 said:

I manually add my own maltodextrin to my protein shakes, maybe that's something I should stop....

How do you track a trigger food? I've only had one flare due to being newly affected - but it came on very slowly over a year, there's no way I'd be able to focus down to one food or even several. Is it only possible when a flare erupts quickly?

I've stopped eating gluten as prior to diagnosis i suspected i might have just become coeliac - but when i reintroduce it I get sores in my mouth and nerve issues. So if i enter remission would you advise keeping away from it permanently? I thought potentially i was just incapable of having it temporarily whilst my small intestine was weakened (gluten getting through the membrane undigested or something) and i would be fine in a few months - but i absolutely wont have it if it will bring about a flare.

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I would suggest not adding it because it's not very healthy to begin with, IBD or not. I might go so far as to say table sugar is safer.

If you have coeliac there's not much you can do to reverse it as far as medical science is currently aware, I would not suggest cheating on a gluten free diet with coeliac as it increases cancer risk and risk of permanent damage to the intestinal villi.

If you have a trigger food you will know, you may not have any right now, and going forward hopefully you never will

The best way to ensure a health gut microbiome that will be able to digest a diverse array of foods for years to come is to eat a diet rich in a diverse number of fibers. You want a minimum of 20 grams of fiber a day, but 40 would be ideal.

This will help promote health bacteria in the gut and crowd out dangerous ones associated with crohn's and crohn's complications.

Avoid taking antibiotics unless it's 100% necessary. These do the greatest harm to commensal gut bacteria and some, like doxicycline, are linked to crohn's.

Probiotic rich fermented foods like kefir, sauerkraut, kimchi, kombucha etc. are also advisable. I don't think a probiotic supplement is necessary for anyone with a healthy diet, since they tend to be bad monetary investment compared to food.

You'll see a lot of people talk about 'soft' vs 'hard' foods and I really don't believe that effects you unless you already have inflammation. What triggers a flare is chemistry, not texture. It's the alkaloids in nightshades for some, the sugar alcohols in candy for others, the gluten in grains, etc. etc.

If potatoes are a trigger food they will still be a trigger food, boiled, mashed, or as chips. If they are just something you struggle to digest because of an advanced disease state, then the consistency might effect it, and that's how you can tell the difference between a trigger food and a food that's difficult to digest.

For people with inflammation, fiber will be difficult to digest so they'll typically avoid it, which is problematic because it's also the best ally in restoring healthy gun bacteria populations.

Once a gut bacteria population is dead the only way to repopulate it is a transplant but they're still not medically approved for Crohn's and still have a low success rate because of confounding factors.

Anonymous77 said:

When eating high-fibre foods - are they just a grievance or do you suspect that if you continued to eat them you would flare?

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I don't think I would flare. From the Mayo clinic: "Eating a low-fiber diet will limit your bowel movements and help ease diarrhea or other symptoms of abdominal conditions, such as abdominal pain. Once your digestive system has returned to normal, you can slowly reintroduce fiber into your diet." I also saw a nutritionist twice to make sure I was getting adequate nutrients. Now I need to "slowly" add fiber.

With the differences in people's crohns progression, symptoms, management, flares, food dependence and treatment-response you really have to question if this is all one disease or if the doctors just have it very wrong.

Anonymous77 said:

With the differences in people's crohns progression, symptoms, management, flares, food dependence and treatment-response you really have to question if this is all one disease or if the doctors just have it very wrong.

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To some extent, yes, but it can all be explained in similar fashion regarding the gut bacteria once you take into account that different gut bacteria effect the ability to digest different nutrients.

There's a lot of nuance to Crohn's when you start reading into it.

InstantCoffee said:

To some extent, yes, but it can all be explained in similar fashion regarding the gut bacteria once you take into account that different gut bacteria effect the ability to digest different nutrients.

There's a lot of nuance to Crohn's when you start reading into it.

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But an inability to digest something wouldn't itself cause inflammation unless the substance itself was noxious and getting through the membrane inappropriately. It will cause gut trouble and discomfort and can be destructive if blocked - but otherwise will just pass through. There is clearly something more going on in some cases than an absence of certain digestive powers. An immune response to the growth of 'bad' bacteria so to speak seems good - but then fecal transplants don't work on everyone, or when they do it's not permanent.

I certainly wish medical research would turn its attention to the bacterial side though - and look to resolve the underlying situation rather than increasingly sophisticated symptom relief.

InstantCoffee said:

I think the most likely explanation given what we know about Crohn's is that the balance of your intestinal bacteria is upset

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I am also very angry that doctors do not acknowledge the link between food and illness for this reason.

The Specific Carbohydrate Diet is based on this explanation of illness - that it is caused by bacterial imbalance, and therefore eliminating foods that feed overgrown bacteria allows the gut the opportunity to heal.

According to this explanation, it is not necessarily that the foods that instantly make one feel sick are bad - for instance, I couldn't eat raw vegetables while I was still symptomatic, but after being on SCD (which starts with an elimination diet, then only cooked fruits and veggies before reintroducing them raw) I can now tolerate them fine. Rather, certain foods (basically sugars and grains) feed overgrown bacteria, causing immune response and inflammation, making the digestive tract unable to digest as many things as it would be able to in its healthy state.

You might be interested in Breaking the Vicious Cycle by Elaine gottschall and http://scdlifestyle.com/

Magnolia24 said:

I am also very angry that doctors do not acknowledge the link between food and illness for this reason.

The Specific Carbohydrate Diet is based on this explanation of illness - that it is caused by bacterial imbalance, and therefore eliminating foods that feed overgrown bacteria allows the gut the opportunity to heal.

According to this explanation, it is not necessarily that the foods that instantly make one feel sick are bad - for instance, I couldn't eat raw vegetables while I was still symptomatic, but after being on SCD (which starts with an elimination diet, then only cooked fruits and veggies before reintroducing them raw) I can now tolerate them fine. Rather, certain foods (basically sugars and grains) feed overgrown bacteria, causing immune response and inflammation, making the digestive tract unable to digest as many things as it would be able to in its healthy state.

You might be interested in Breaking the Vicious Cycle by Elaine gottschall and http://scdlifestyle.com/

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But if this were the case, what caused the bacterial imbalance to begin with? My diet for example has not changed for almost a decade as I'm quite strictly into powerlifting and exercise - I could tell you what I had on any day of the week any year due to the routine, with the only change being a removal of alcohol and soft drinks with it the last couple of years. Yet crohns still suddenly turned up. I took antibiotics for the first time in my life about a year before this all began, but that seems too in the past...

In regards to what InstantCoffee said about Doxycycline: I had no G.I. problems before I went on doxycycline for several months to clear up a little bit of acne. Started getting some G.I. distress after I was on it for a while. As soon as I was off of it I had a full blown flare which landed me in the hospital. Tested me for C diff it was negative. Took a couple months after that before they diagnosed me with Crohn's via a colonoscopy/ landed me in the hospital. Tested me for C diff it was negative. Took a couple months after that before they diagnosed me with Crohn's via a colonoscopy/ biopsy. Pretty much convinced that this anabiotic triggered my Crohn's. I might have some genetic susceptibility since my mom and sister have IBS, but I may not have ever developed crumb not have ever developed Crohn's if I had not taken this antibiotic for such a stupid reason.

Wondering if you could have avoided it is the worst, with the identical twin studies showing 70% concordance that still means that even with every single genetic piece in place some people still go through life without getting the disease. Though hopefully if yours has been 'done' to you by a single thing like that, it might one day be easily 'undone'.

Thanks Anonymous77, I'm trying to undue the damage with food and probiotics but I think I would need a fecal transplant to truly restore my microbiome. Unfortunately in the US I doubt that will ever be an option since pharma won't make money on it.

I was not on antibiotics for over a decade before I got Crohn's. I did however have a very stressful job for many years prior. They are looking at stress as a possible trigger. Crohn's patients are all so different. http://www.sciencedirect.com/science/article/pii/S2352304214000130
Finally, the gastrointestinal tract is sensitive to stress and stress mediators, including catecholamines. Irritable bowel syndrome (IBS) is a common disorder through the gut–brain axis that might be triggered by gut bacterial imbalance. The brain–gut axis allows bidirectional communication between the central nervous system and the enteric nervous system, linking emotional and cognitive centers of the brain with intestinal functions. An association between dysbiosis and stress and depressive disorder has also been proposed.

There are some centres in the UK that do it, though i think you'd have to book to be over for a few weeks seeing as I think they give multiple 'transplants' to ensure it takes a hold.

That said the primary website is filled with quotes about how medical science is too arrogant and we should try new things. Statements like that seem to be pushing too hard and wouldn't be necessary if they had the confidence of astounding results. So Im going to hold off until I have a better understanding of my own version.

Though a benefit it certainly has over probiotics is that you can only supplement with stomach-resistant bacteria and if the species you are missing are not, the only way of getting them in is transplant as far as im aware.

Tuff said:

I was not on antibiotics for over a decade before I got Crohn's. I did however have a very stressful job for many years prior. They are looking at stress as a possible trigger. Crohn's patients are all so different. http://www.sciencedirect.com/science/article/pii/S2352304214000130
Finally, the gastrointestinal tract is sensitive to stress and stress mediators, including catecholamines. Irritable bowel syndrome (IBS) is a common disorder through the gut–brain axis that might be triggered by gut bacterial imbalance. The brain–gut axis allows bidirectional communication between the central nervous system and the enteric nervous system, linking emotional and cognitive centers of the brain with intestinal functions. An association between dysbiosis and stress and depressive disorder has also been proposed.

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I think the most likely explanation has to do with synthesis of serotonin from 5-htp / tryptophan in the gut. I don't fully understand it but I think it has something to do with defective OCTN transport proteins and the body under stress being unable to uptake additional serotonin from the gut causing serotonin toxicity.

There's a treatment floating around to address it but it's really hard to find doctors willing to oversee it.

Anonymous77 said:

There are some centres in the UK that do it, though i think you'd have to book to be over for a few weeks seeing as I think they give multiple 'transplants' to ensure it takes a hold.

That said the primary website is filled with quotes about how medical science is too arrogant and we should try new things. Statements like that seem to be pushing too hard and wouldn't be necessary if they had the confidence of astounding results. So Im going to hold off until I have a better understanding of my own version.

Though a benefit it certainly has over probiotics is that you can only supplement with stomach-resistant bacteria and if the species you are missing are not, the only way of getting them in is transplant as far as im aware.

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The biggest problem is the bacteria we typically need are in the firmicutes and clostridia strains which are anaerobic bacteria, they die within 5 minutes of being out of the body, so you can't put them in a pill.

In a FMT the sample needs to be put in saline and delivered within a short time span or frozen for best results.

Anonymous77 said:

But if this were the case, what caused the bacterial imbalance to begin with? My diet for example has not changed for almost a decade as I'm quite strictly into powerlifting and exercise - I could tell you what I had on any day of the week any year due to the routine, with the only change being a removal of alcohol and soft drinks with it the last couple of years. Yet crohns still suddenly turned up. I took antibiotics for the first time in my life about a year before this all began, but that seems too in the past...

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I think that varies person to person, and is hard to track. If you're curious about a more thorough explanation of this theory on IBD, you could check out Breaking the Vicious Cycle!
Personally, I had terrible food poisoning while studying abroad and was treated with many antibiotics. I had stomach pains on and off for the next year or so, which gradually increased before I was diagnosed with Crohn's. I suspect that illness and treatment have something to do with the origin of my Crohn's, but there is no way to know for sure.

Hi Anonymous 77. I strongly believe that there is a relation between a flare up and food. For me every time I eat certain foods like corn, fruits with skin, pulses, etc I get aggravating pain and an upset stomach. If I continue consuming food I can't eat it leads to inflammation and then months of pain, etc.
Please note down all the things you cannot eat and avoid it completely. I am very sensitive to food so my doctor advised me to never consume those items even when I am in remission. It's difficult and depressing but better than months of agony.
Tc.