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Posted 2/26/2019 8:23 AM (GMT 0)
IBD: In Food We Trust
https://academic.oup.com/ecco-jcc/article/10/11/1351/2480009
Posted 3/10/2019 7:56 AM (GMT 0)
I'll never forget when I first met my GI doctor. I didn't yet know how ignorant they can be, so I started talking about all the diet modifications I made to try and ease my symptoms. He was looking at a clipboard with my file and he literally waved his hand at me without looking up from the board, dismissing me. He said diet had nothing to do with IBD maintenance. I was shocked. He told me it was more important that I gain weight, so I should eat as much of everything I could get my hands on, even junk food. He literally told me to go eat bags of chips, eat butter, drink cow's milk, eat enriched wheat pastas... all the things that were causing me pain.

My MD told me that in her med school program, doctors had one seminar on nutrition that was 4 hours long. They were told that nutrition was for dietitians and nutritionists, so MDs aren't expected to learn about it.

If a doctor ignores how important diet and nutrition is for a DIGESTIVE DISEASE, then it's a major red flag for how they're going to handle your condition, if you ask me.
Posted 3/10/2019 1:45 PM (GMT 0)
Well said Mark!
Posted 3/10/2019 4:10 PM (GMT 0)
The bottom line is there are no diets or supplements officially approved for the treatment of UC. Therefore, gasteroenteroligists do not recommend them as part of your treatment plan, due to liability issues. Doctors cannot prescribe things that aren't recommended for the treatment of UC, period.

There's no big red flag, and there's no big-pharma conspiracies about it all. There is just insufficient research to prove diets and supplements are effective for the treatment of UC. Yes, there are some small scale, open-label studies. However, nothing on the scale of, and peer verified enough to be a clinical recommendation. The CCFA and other nonprofits are persuing this avenue with ongoing research but its not done, at least some progress is being made.

From reading your recent series of postings, I can see you had some bad reactions to meds, distrust doctors, and have found some relief through alternative means. Sounds like you've been through a lot and I'm sorry about that! However, it doesn't mean that your solution and experience with medications is broadly repeatable among many. I wish the diets and alternative successes were broadly repeatable among many, that does not appear to be the case from reading here over the years. Helps a few who are adamant and vocal supporters thereof, some have had partial successes and use that and meds, others see no benefit at all (present party included, and have not had side effects from meds at all).

What's one's miracle, does nothing for another, and might even make another's symptoms a lot worse. That's just UC fit neatly within a nutshell.
Posted 3/10/2019 4:20 PM (GMT 0)
This article, while good intentioned, would not persuade any MD that diet can be an effective way to remission. It aims at getting clinical studies done to support what diet modifications IBD people say works for them. Doctors do not act on hearsay, they will start talking about diet when clinical studies show benefit and continue to prescribe RX because studies support that with maybe some probiotics. They won't get sued for malpractice doing that.

I could not afford to wait for clinical studies on diet, RX alone was just not working for me. But in the beginning only saw small benefits from diet because my gut was in such bad shape. But the small improvements gave me hope to continue. Diet mod. is not easy in the beginning and that's putting it mildly. Now it's a way of life and I feel no deprivation.

The difficulty with diet studies is that they will be extremely complicated. None of the best known IBD diets: SCD, AID and Paleo are exactly right for my gut and it took years to sort out which foods my gut tolerated. I hope clinical diet studies go forward because I know they will help some people, just like UC meds help some people. Until then IBD people have to do the best they can with hearsay from others.
Posted 3/10/2019 4:41 PM (GMT 0)
I think that we are obsessed with diets because our immune system attacks our digestive tract. If you look at another autoimmune disease for example Multiple Sclerosis, people with this condition are not obsessed with diets at all. Mechanisms of both conditions are probably similar - immune system attacks normal healthy cells. Yes our inflamed tract do not tolerate certain food. If we avoid that food we feel better. But It does not necessarily mean that it lessens out inflammation.

Comment are welcomed
Posted 3/11/2019 12:52 PM (GMT 0)
"If you look at another autoimmune disease for example Multiple Sclerosis, people with this condition are not obsessed with diets at all. "

maybe they should be -
Posted 3/11/2019 2:03 PM (GMT 0)
If you look at Multiple Sclerosis & diet research you will find out similar situation like we have in IBD realm. Some pilot studies have been done but no clear "signal" has been found. And of course there are many anecdotal stories but we can not rely on them.

https://www.mdpi.com/2072-6643/11/2/352/htm
Posted 3/11/2019 2:25 PM (GMT 0)
Many prominent people on this forum are at least somewhat dismissive of diet being a key component of managing IBD, because in their own experience it didn't seem to make any difference what they ate. But I feel that diet is always a factor, just from the standpoint that our intestinal linings are damaged from the disease and we should not be eating junk food or things hard to digest like heavily fried foods. The main point I want to make though is trying different diets and seeing no improvement doesn't mean what you eat doesn't matter. Some examples. Histamine intolerance. I avoided many foods high in histamine for years just by observation that I didn't react well to them. But I never had heard of Histamine intolerance, until I had some genetic testing done, and only after discovering I was prone, did I avoided things like aged and cured meat, left overs, fermented foods, etc. I had the benefit of research to guide me on what to avoid, and it turned my life around. Same story with my fructose intolerance. I knew I handled fruits badly but until I found fructose intolerance was a thing I didn't know to avoid most spices because they are high in fructans. Some people are highly sensitive to lectins and improve when limiting them. Some people improve quickly on the SCD diet because they are in dysbiosis. So my point is 2 fold. As best we try to experiment with diets or just observe and eliminate problem foods it is really tough to figure out on our own what makes a difference without knowing what's really causing our symptoms. And secondly, I wish every GI would see diet as something that could help (not a cure or main treatment) and have a dietician on staff or they refer patients to that have an interest in taking an active role in their wellbeing.
Posted 3/11/2019 2:35 PM (GMT 0)
I think the point is for those who could not heal themselves with diet is that we can feel like we are being judged for not trying hard enough, by those who feel helped by diet. I actually have a very restricted diet but it's more something that i figured out by trial and error, which foods consistently make me feel worse. I wouldn't dare to say that those foods cause the disease, more that im unable digest them and they may aggravate the symptoms when I am in a flare.
Posted 3/11/2019 2:46 PM (GMT 0)
Happy to see we can debate the pros and cons. Years ago, there were two very combative factions on this forum, and discussions such as this would result in flaming and inevitably a locked thread (and often new threads spawned that were a continuation, and locked etc). Now, I'd like to think everyone here is a bit more open to trying things and pragmatic about UC treatments as a whole (try it see if it works, if not move on and try whatever you think is best).

Each individual has an inherent bias, based on what worked for him/her. We've all had very different journeys, success, and failures in treating our own UC, and it has firmed up our individual opinions on what does or does not work. I think it's important to celebrate successes, through whatever means works for individuals as we all know how much suffering through UC symptoms stinks.
Posted 3/11/2019 2:50 PM (GMT 0)
Poopydoop, I totally get your point of view. On the "not trying hard enough" judging, that is not me at all. Playing around with diet on our own can actually cause much more harm than good.
But I think there should be a real choice when working with a GI. Many people have jobs where they can't do a restrictive diet even if they wanted to. Putting one's care in a GI's hands is sensible. It frustrates me though that if one does decide they want to experiment with diet or supplements there is very little support offered by most GI's I know of.
Posted 3/11/2019 4:25 PM (GMT 0)
Ok that's good to know because sometimes i can feel judged (although maybe that's also from people in my real life who don't have UC). Re about not everyone having the resources to fix themselves with diet - absolutely. I remember in elaine's scd book she has some tips at the end for how to manage the diet and one of them was "Get a home help once a week" and i just thought, great, so this is only for people belonging to a certain echelon of society...
Posted 3/11/2019 5:42 PM (GMT 0)
I dont follow any diet....but certainly know what foods can cause me discomfort and gas.
The issue here is that many believe it's all or nothing. Who in the world would only eat fried and junk foods...? Why even use statements as such?
And discomfort, loose stool or gas doesnt always mean UC. The confusion is what can cause mental distress. There is balance in every cultural food group, and suggestions of one over the other is totally subjective.

I got flack for years on here from some for suggesting and encouraging.....ok, pushing....UCers to request rectal meds. So I understand the drive to suggest food change.
It's first on my list as what have I eaten differently, but I've never made a lean toward it as causing or making a flare worse.

Confusion of meds vs food.....again, Im going to bring up the guilt many feel as being a failure to the point of allowing deterioration of condition.
It becomes a mental issue and not a food issue.

I can say with absolute certainty that food has no bearing on my UC.....but eating some foods can certainly cause me gas discomfort bigtime.

Bottom line.....doesn't matter what people judge, as long as you recognise UC symptoms and don't totally reject meds if you need them.
If diet was the way...UC wouldn't be incurable as it is. Genetics is a huge part, and some of us need meds.

Interesting....many praise Asian countries diet for lower incidence of UC yet highest for colon cancer (as per my GI).

q
Posted 3/11/2019 6:05 PM (GMT 0)
eating some foods can certainly cause me gas discomfort bigtime.

What’s the difference between “gas and discomfort” and UC? Do you think that continuing to eat those foods will quickly lead to a flare?
Posted 3/11/2019 6:08 PM (GMT 0)
And the difference there is a food-intolerance exist for some, not all of us. There are extreme examples like a gluten-intolerance or dairy-intolerance, which can cause extreme discomfort and symptoms shortly after ingesting (such as a strong dairy intolerance can cause flatulence and stomach upset shortly after ingesting). There are also much more mild forms of intolerance where you might not have immediate symptoms (like those described), but have a rougher series of bms the following day as a consequence there of. And we can have an intolerance to any food (nightshades, etc etc), not just gluten or dairy. So for some with intolerance, eliminating certain foods could be beneficial.

There's no doubt that what we eat has an impact on the composition of bacterium within the gut, and as IBD patients we have less diversity and strange abundances of bacterium. We have the healthiest diversity and abundances when we eat a greatly varied diet full of lots of nutritious foods. I'd wonder if the messed up bacterium is more of a symptom of UC rather than a cause. Certainly some would wager that diet restores healthy bacterium and makes you feel better as a result. Don't think the occasional snicker's bar would destroy it all, as healthy individuals bounce back just fine from antibiotics and other shocks. Would expect few, if any of us, eat mcdonald's chicken mc nuggets for every meal for years straight though.
Posted 3/11/2019 6:25 PM (GMT 0)
Not a bad idea to track what causes excess gas and try avoiding those foods when flaring (maybe all the time). Blowing up your colon like a balloon with methane air can't help a flare.
Posted 3/11/2019 6:42 PM (GMT 0)
Hi John,

I enjoy exchanging ideas with you so in regards to

Certainly some would wager that diet restores healthy bacterium and makes you feel better as a result. Don't think the occasional snicker's bar would destroy it all, as healthy individuals bounce back just fine from antibiotics and other shocks. said...


When I was still in a cycle of flaring years back I started doing comprehensive stool testing and I always had pathogenic levels of a certain bacteria, that feed on simple sugars. I would get stable for a while and eat a meal or two like desserts or simple carbohydrates again and boom I would be fighting a flare for weeks. Now after a few years of stability, I have more tolerance for things like rice. My dietary changes and supplements keep me very stable now and my stool tests look pretty well balanced microbiome wise. But the distinction I make between UC and my food intolerances I have is: I presume most of my food intolerances were caused by my UC. While my UC symptoms are likely genetic and still triggered when I am fighting infection or exposed to c. diff or other bacterial loads like when I travel to a foreign country. I know now from experience that the infection fighting only causes mild symptoms and they no longer worry me. But I am still scared to go to certain countries because if my microbiome gets turned upside down from eating something bad and I had to take antibiotics I don't know if I would be able to prevent a flare with my diet/supplements or not. And I suspect no UC medication is going to stop me from flaring either under these circumstances.
By the way, I only offer my opinion on these matters when I see a thread started by someone looking for support on diet or natural treatments. I otherwise do like to discuss and differ, but not in the written form where people seem to get defensive or hostile more quickly.

Posted 3/11/2019 9:54 PM (GMT 0)
I look forward to the CCFA trial of SCD and the Mediterranean diet. Unfortunately, even if they discover something, we will have to guess as to whether or not it will apply to UC. I wrote to them when they first announced the trial and asked why they didn't include UC patients. The person who wrote back got defensive and gave me a bunch of links to other dietary studies (all of which were pathetically limited). They never did answer my question.
Posted 3/12/2019 4:38 AM (GMT 0)

Coffeemate said...
eating some foods can certainly cause me gas discomfort bigtime.

What’s the difference between “gas and discomfort” and UC? Do you think that continuing to eat those foods will quickly lead to a flare?


No....one of those foods is banana. Had a craving, so had them two weeks ago, half a banana in the evenings. Nope, cant do the type of gas. Didn't flare, why would I?

q
Posted 3/12/2019 8:53 AM (GMT 0)
OK, let us assume that diet can cause/cure UC. UCers report success with totally opposite diets. For example carnivore/vegan diet. It means that trigger/problematic food is different for each person. It means that it will be very difficult to find out these problematic food component with classical approach (cohort, randomized, prospective studies)

Comments are welcomed.
Posted 3/12/2019 12:08 PM (GMT 0)
Oligadar I don't agree with your assumption that diet is a "cure" for UC, merely a viable peripheral treatment. I do agree with your conclusion:

It means that it will be very difficult to find out these problematic food component with classical approach (cohort, randomized, prospective studies) said...
.

I have high hopes for fecal transplant treatments in some form being very effective for UC in the future, but I think it will have to be customized in ways we don't understand yet to have a high success rate. I am skeptical about a real cure for IBD like gene therapy, until medical science can pinpoint the specific genes associated with IBD.

Posted 3/12/2019 1:04 PM (GMT 0)
We know our gut bacterium is weird (high amounts of baddies, and low diversity) as UC patients. But is my wacky bacterium makeup exactly the same as yours? Are we both low in the same families of bacterium, lacking the same ones, etc etc (I'd wager we are all very different in that measure)? If a diet were a treatment, and effective diet vary so much between individuals, could that at all correspond to what's wacky with your/mine/other people's individual missing/overpopulated bacteriums? Purely a guess.
Posted 3/12/2019 1:35 PM (GMT 0)
Ok, let us complicate things even more. Again let us assume that diet can cause/cure UC. Do not get me wrong I do not claim that. It is only working hypothesis to demonstrate my thought process. What if there is a food that worsens our symptoms but has no effect on actual inflammation (e.g gassy food). And what if there is a food that do not worsen symptoms immediately but worsen actual inflammation after some time(e.g food that increase intestinal permeability). If it is true then our symptom observations after eating certain food could be very misleading.

Comments welcomed.
Posted 3/12/2019 1:40 PM (GMT 0)

If it is true then our symptom observations after eating certain food could be very misleading. said...
Wholeheartedly yes on this IMHO. Some foods cause an immediate reaction, others seem to have a cumulative effect.

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