There is no cure for CD, you must do your best to accept that.
Furthermore, despite what you may have read in this article, elsewhere on the internet and in countless anecdotes (such as on this hacker news page in the comments), it is highly unlikely that changing your diet will affect the disease. At most, changing the diet will cause or reduce some discomfort (imagine gas bloating up ulcerated tissue, or capsaicin from hot pepper touching an ulcer: the gas and the capsaicin doesn't cause the ulcer, and doesn't make it any worse, but it makes it hurt), but no diet change will stop the disease.
The best thing you can do for your son is to keep regular follow-ups with a gastroenterologist and follow the suggested course of treatment. That will probably mean taking biologics such as anti-TNF medication or other antibodies, but there are a variety of ways to approach treatment and it depends on the patient.
https://www.cochrane.org/CD000542/IBD_enteral-nutritional-th...
A couple years ago a trial looked at replicating EEN with solid foods with promising results https://pubmed.ncbi.nlm.nih.gov/30550821/
EEN is a first line therapy in adolescents but rarely mentioned to adults (and in North America less commonly mentioned to adolescents). I was treated at Kaiser and UCSF and nobody ever mentioned it to me. From the Cochrane article: "Whereas 62% of western European gastroenterologists use this therapy routinely for the management of pediatric patients with Crohn’s disease, only 4% of American gastroenterologists regularly use enteral nutrition in their practice (Levine 2003)"
As a Crohn's patient I found it worked well layered on top of a biologic to get into quite deep remission.
Aside from EEN, once you are in remission bowel habits are clearly manipulated by diets - being regular is caused by diet/hydration. I have pretty much perfect consistency right now and it's pretty easy for me to change that if I switch up my routine.
In principle, we understand that an important part of the aetiology of CD has to do with interactions of the gut microbiome with a dysregulated immune system and a perturbation of the intestinal barrier. We know that the gut microbiome is somewhat plastic to dietary changes, though research findings regularly frustrate attempts at intentional modification.
It would be more correct to say that there is no dietary change which is known to causally and intentionally alter the course of the underlying disease.
That is not the same as saying that no relationships or correlations have ever been observed, or that dietary changes do not provide some symptomatic relief: on the contrary, we know that people who have a certain diet have a lower prevalence, or better subjective or even objective outcomes. Unfortunately, most attempts at taking patients from the worse group and changing their diet to match that of the better-off group fall flat on their face. This is a few years old and is not specific to CD, but it is a great example of the type of results we see over and over again in dietary intervention studies of this nature: https://www.cell.com/fulltext/S0092-8674(15)01111-3
Obviously this is an area of research of great interest, and if we could figure out a way to improve outcomes by making specific and robust dietary change recommendations, we would. It really is not that simple, unfortunately.
I don't dispute the results of the studies you link, and I find the Cochrane meta analysis particularly notable, but I would caution that interpreting the results doesn't seem to me to be as straightforward as it might seem.
I wonder whether controls are adequate (there is no placebo group here, for ethical reasons), I wonder whether the results can speak of longer-term outcomes, whether there is a selection bias (would you do this study with patients who have severe or advanced disease, or mostly with people who have milder clinical presentations?), whether the results might indicate to some degree the natural progression of largely self-limiting flareups, whether it's appropriate to compare induction of remission using corticosteroids with diet interventions (which I'd expect would have more of an effect on maintenance of remission, if anything)... I just don't think it's that simple. Remember that people with untreated CD will have flare-ups that occur and resolve spontaneously for some time before the disease starts progressing and surgery is required.
That being said, non-elimination, generally-healthy diets, on the other hand, are always recommended, as is regular physical exercise.
As a parent myself, I can’t imagine how helpless you must feel watching your own child struggle with it. Wishing you guys the best of luck and thoughts are with you!
Somewhat paradoxically... I'm curious if you've tried to modify your diet by including extremely spicy foods on a daily basis?
Most people approach diet modification as a way to maximize comfort and minimize pain, but my strategy is to use capsaicin as a 100% safe and pure-pain mechanism to sound the alarm when I develop an ulcer. It's not always immediately obvious when you develop an ulcer, depending where in your GI tract it is... And this is where knowledge is power: if you can somehow know that you're going to flare up before you actually flare up, then my argument is that you have a better chance at damage-control. Similarly, if you are more pain-sensitive to ulcers you would be getting either way, then you might be aware of more episodes of inflammation than you might otherwise be. With my super hot pepper diet, knowing that it's purely pain and no damage makes the pain itself a lot less stressful, and I have very occasionally used this signal to take a single 2.5mg dose of prednisone (I've been on the same no-refill bottle since 2013, so this doesn't happen often). Since 2013, I've never had to take more than one dose at a time, and judging by how many pills I have left, I've probably only done it 20-30 times or so (I should really keep a journal).
(Disclaimer: I wouldn't put a lot of faith in this tip, and I'd strongly caution against taking corticosteroids for more than a few days, and to talk about this with your doctor before trying it.)
Mine is in my terminal ileum and I can definitely feel when things are…tighter, for lack of a better description.
Definitely agree with recommending staying away from corticosteroids if you can avoid it. I was on them for a year and the side effects on them were not too horrible, but getting off was a whole other story! I am glad they were there though, as it was only thing keeping me from surgery/the hospital until I found a biologic that worked.
Maybe, maybe not. This Crohn's vaccine looks promising. The vaccine is preventative and curative so it can treat patients who already have Crohn's:
https://crohnsmapvaccine.com/faq/
They've started safety trials in Crohn's patients. Hopefully it all works out and the vaccine proves to be effective.
There have been a number of whole microbiome sequencing studies comparing IBD/CD patients and healthy controls, and to the best of my knowledge, though there are demonstrable differences, no studies have established or even really "strongly suggested" a causative link with a specific microbe or even with a class of microbes. There are many other candidates that have been found to be associated with IBD, but none of them seem to be to blame on their own. If MAP was the cause of CD, we would easily know it from these studies.
If we knew that MAP was the key, then treatment and prevention would become quite a lot simpler. We simply don't know that, and I'd go so far as to say that this will never work beyond a small subset of patients. IBD (both UC and CD) have a notoriously multifactorial aetiology.
I spent a 26 years battling the strangest health issues only to find out that I'm allergic to wheat. My body didn't produce the classic symptoms of celiac, which is my disease, until it did: Duhring disease, or sores that form in response to gluten reactivity.
The gluten-free lifestyle is a shock for someone who loves bread and pasta as much as I do, but I feel a thousand percent better.
Inexplicable weight gain my entire adult life disappeared seemingly overnight, as if my body couldn't wait to get rid of it. I went from 235 to 170 without even trying.
Doctors tried over and again to diagnose me with bipolar disorder since I was 21, and I kept telling them they were full of s**. The symptoms of depression and mania have completely disappeared. I haven't had to take an antidepressant or antipsychotic in over a year. I was taking both every day.
Worse was hives. I had this untreatable disorder known as cholinergic urticaria, essentially allergic to my own sweat, and now that's gone as well. This urticaria disease is so debilitating I wouldn't wish it on the worst of people.
I still feel like an idiot.
I always knew it was related to yeast. I told doctor after doctor, but they kept thinking it was some sort of fungal infection. I knew yeast was causal somehow. I never thought it would be so simple: wheat is my personal poison.
A diet without gluten has given me a new lease on life, so now I have to confront the world with complete health, and that is truly difficult.
I lived my entire adult life alone because I was poisoning myself with gluten.
And make no mistake, I was absolutely one of those people poo pooing gluten-free this, gluten-free that as just another ridiculous fad diet.
Was I ever wrong!
Seattle Children's Hospital [1] uses the diet as one of the primary treatment modalities.
Even if you don't choose to follow that diet, the primary goals should be to eliminate any inflammation, and also find foods that are safe to eat. Most people who do well, in terms of outcomes, learn to be very careful with what they eat. No matter what, it's a long term learning process. Eventually, you want to eat as diverse a diet as possible, while still avoiding any foods that are potential triggers for inflammation.
Unfortunately, most gastroenterologists are not knowledgeable about diet, and are not helpful, in terms of dietary treatments. I would recommend finding a doctor who is supportive of both dietary and drug-based treatments, as opposed to a doctor who has the blinders on, and sees drug treatments as the only option.
[0] https://www.facebook.com/groups/SCDers/
[1] https://www.seattlechildrens.org/conditions/crohns-disease/
You might be able to avoid symptoms of pain with a particular diet, but that is only a very minor benefit. If you aren't preventing the inflammation you are still going to suffer all the worst effects of the disease. If these kids aren't getting routine colonoscopies / MRIs (like one every two years or more) to try and detect if there is any inflammation, then they have no idea if the diet is actually working for them or not.
If you go to any Crohn's discussion group where it's the actual _people_ with Crohn's talking and not their parents, they will say things like: "Every asshole thinks they have 'thee diet' that will work, when they don't." See for example /r/CrohnsDisease.
> while still avoiding any foods that are potential triggers for inflammation
There is no evidence that specific foods are triggers of inflammation, only triggers of _symptoms_. The best guess we have is a particular type of bacteria + bad genes is the real cause of inflammation, but that bacteria exists everywhere (including drinking water).
Well, you know what: The same is true for open heart surgeries. (One of the most incredibly invasive procedures possible.)
Actually, there are studies that support diet as an effective means of treatment.
No, there aren't enough of the "right" studies that are as "high quality" as the ones supporting the efficacy of various drugs. However, "evidence" doesn't change reality, instead, it simply reflects it.
You asked about success: For me, success means no active inflammation, at all. Which was achieved through a combination of drugs and diet.
For others, success means no longer going to the bathroom twenty times a day. Having "regular" bowel movements. No obvious symptoms.
Your comment brushed off "symptoms" as something unimportant. But, for people who are really debilitated by the disease, a change in diet that eliminates the symptoms is life changing. No need for "evidence" on that.
You're right that there's no "one" diet that works for everyone, as I mentioned in my original comment. It's a learning process. However, it's also my observation that everyone with Crohn's disease gets very aware, and very specific about what they eat. (Or, they eventually face the consequences.)
Placebo-controlled RCTs are only feasible when it's possible to ethically apply the placebo or the treatment. Generally speaking, the types of things we do open heart surgery for, like valve replacement, coronary bypass, or pacemakers, it is impossible to ethically apply a placebo.
You only need RCTs when there is some question of fact that needs to be resolved. There is no need for a random controlled trial about whether stopping all water intake will kill someone. For some types of heart surgery, this doubt does exist, but for any of those types which are not being studied with RCTs, I would guess there is not much doubt. If your heart valve is busted and it is causing you to be unable to pump blood, you can look at the pumping efficiency before and after replacement. No RCT needed.
You'll note that these two factors are very different from diet. It is possible to ethically apply a control and a treatment where it comes to diet, and there is much doubt as to their efficiency for some purposes.
Yes, it may be that your solution only worked because you believed it would work. But take the win!
Certainly solutions backed by double blind controlled studied are way better. But those often aren't an option, so use what is.
People bankrupting themselves on snake oil, or having other health issues due to weird diets, or avoiding actually proven medicine are all extremely harmful.
Starch is the only sugar the immune system doesn't attack.
There's no known cure for Crohn's disease, only treatment to reduce symptoms. If you are really lucky it might go into long-term remission, but theres no 'cure' yet.
As someone who's been dealing with severe chronic symptoms of Chron's my whole life.... I wish there was.
But despite the fact that there's no cure, there is a lot you can do to control it:
* There are a lot more, better treatments today than back when I was a kid. Your GI doctor should be able to help with this.
* I believe that the largest aggravator is stress. Your boy really needs to learn to handle stress. In my case, I was rather a perfectionist, and had to learn to just let go of things that I couldn't directly fix myself. And of course the disease itself is a prime stressor, so he's got to come to terms with it.
* Different foods can be triggers for different people, due to individual differences plus the areas of the GI tract that are implicated. You need to experiment (keep a journal!) to figure out what these are. Don't fall for someone trying to sell a silver bullet like gluten-free. That may, indeed, help some people, but it won't others.
I've had two severe Crohns flare ups (one required a bowel resection), both of those flare ups can be contributed to major stress incidents (first one divorce, and second one the death of my mother)
Otherwise I only have mild symptoms that are only annoying more than painful
At least for my case, with minor concessions to diet, and with having health insurance that'll pay for my (expensive) treatments, my symptoms are pretty minor. I think I could count on one hand the number of times this year I've had any serious discomfort that seemed connected to the disease.
The one thing that bothers me is the persistent problem of poorly-formed bowel movements, and occasional diarrhea. You never really know when this is going to pop up. For short-term things like a night out you can plan ahead, maybe take an immodium beforehand. But there are things I'd like to do that this interferes with, at least to the point of being an embarrassing inconvenience. For example, I'd love to take a rafting trip through the Grand Canyon, but it seems like managing the issue would be complicated in a situation where the best facilities you've got are a bucket in a tent set up by the guides (and even that is only when it's been set up!), so it's a bucket list thing I'll likely never get to.
I find staying active and eating healthy diets also really helps.
There's no curing it, the best you can do is take the treatment and be as healthy and active as you can generally! Kudos.
What I haven’t seen mentioned yet is the FODMAPS diet to control symptoms [0]. This is a diet specifically designed by Monash University, an Australian research institution, to treat IBS and IBD flare ups about one decade ago. It is based from modern science, it is easy to follow (you can run online searches for specific ingredients if you forget), and it allows for quantitative measurements. FODMAPS stands for fermentable oligo-, di-, mono-saccharides and polyols, which are types of carbohydrates that aren’t absorbed well by parts of the GI tract. Another comment mentioned The Specific Carb Diet, but that is outdated and will needlessly restrict your diet and freedom. For example, grains are ok: it’s the soybean oil used in cheap bread that isn’t.
The person I’m close to with Crohn’s enjoys a life unencumbered by their disease. They take their medicine once every two months and they eat out at restaurants or at other people’s homes without a second thought. They eat dairy products, which are not immediately FODMAPS friendly, but avoid garlic, onion, and broccoli. They know they can eat green beans, but not pinto beans. Because of the modern research that underpins FODMAPS, they know they can use garlic oil to get the same flavor but without any of the FODMAP carbs. But, because they follow the diet most of the time, they can occasionally “cheat”, too, and eat some of the high FODMAPS foods every now and then.
You can take charge and your child does not have to suffer. You have agency. Good luck.
[0] https://www.hopkinsmedicine.org/health/wellness-and-preventi...
Downvote away!
So omega 3 can cause inflammation yet its a popular supplement. What about gut bacteria, some ulcers can be caused by gut bacteria which a course of antibiotics can treat, but most people dont know penicillin based antibiotics get broken down into penicillamine which helps remove copper from the liver used for Wilsons. Now Heme and Chlorophyll are identical except Heme has an iron ion and Chlorophyll has a copper ion, but I've never heard a doctor tell me or anyone else to eat more greens or take a chelated copper supplement when prescribing a course of penicillin antibiotics, do they want the infection to clear up?
Its also worth noting, that when Alexander Flemming discovered antibiotics he said antibiotics need to keep being taken until the infection has cleared up. Now GP's issue standard fixed length courses and tell us to come back if its not cleared up and we wonder why we have antibiotic resistance!?!
If anything the gold standard is to use antibiotics initially whilst phages are being developed to target the infection and then go onto the phages. Phages are expensive but mass use could bring the price down.
And with antibiotics, its worth bearing in mind that bacteria can go dormant in the body and lie in wait until conditions are good enough for them to go active and breed again and like Covid they can evolve. Bacterial strains can be used to work out who has come into contact with others (sexually) who have the same strain infection.
And if you visit planet earth's deep freeze, ie polar regions, you might be able to find some ancient strains of bacteria.
Anyway I'd look for a multitude of solutions and be ruthless with failure if you want results. You only live once, demand the best, help drive up standards in every part of life!
The article linked briefly mentioned this, but you'll find more info in this excellent meta-analysis here: https://pubmed.ncbi.nlm.nih.gov/33450982/
Good luck.
Edit: it eliminated his severe allergies and alleviated the symptoms of Crohn’s, so it seemed like there was more problems besides Crohns.
Basically, eliminate everything that is not absolutely necessary, and then slowly add back things to see if they mess you up, and then you can at least isolate problem foods.
My son was diagnosed for Crohn's disease last year. He was 11 years at that time. His CalProtectin was 1040 at that time which very high compared to the safe value of 60. We gave him gluten free diet and it came down to 300 in 3 months but shot back to 700 few months later. Not sure what caused it go up.
I am desperately seeking help in curing him of Crohn's.
We are from India settled in USA. Does anyone have any good resources on this topic.
The doctor said that first generation immigrants don't get this disease but they have noticed that the their kids do get it.