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Crohn's Disease Forum » Diet, Fitness, and Supplements » Proof of diet "curing" Crohn's


 
08-12-2014, 04:00 PM   #1
endrwign
 
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Proof of diet "curing" Crohn's

I read so much about people claiming that this diet or that diet or this supplement or that lifestyle change cured their Crohn's. However, not ONCE have these people posted a before and after picture of the insides of their intestines as seen through a colonoscopy or endoscopy to PROVE that they are "cured" or have even improved.

So my question to the members of this forum is: have you seen any before and after pictures that show proof of any of this working? If so, can you please post it here?

It's one thing to improve symptoms of the disease but if you feel better and your intestines are still experiencing inflammation, ulceration, and scarring then it's just a matter of time before you are going to have to go in for surgery.

I was diagnosed with Crohn's after an enteroscopy showed swelling, ulceration, and strictures. Other than that, I do not really have any of the symptoms. I have 1 BM a day with no mucus or blood. I do not have pains except for the occasional cramp which feels more like that feeling you get when you are nervous and have butterflies in your stomach. The GI that conducted the enteroscopy wants to put me on Humira but I would rather not start on black label medication if I don't have to. Been planning on giving SCD a try but have found no hard proof (pictures) of any improvement.

All that to say, I want to believe that diet and lifestyle changes are the answer but I am not looking for something that will improve my symptoms if inside this disease is still wreaking havoc on my intestines. While I would rather try diets and lifestyle changes before going on drugs, I do not want to waste time following "cures" that people claim are cures just because they "feel" better and not because a scope showed healing or an improved bowel state.

Sorry for the rant, I just get angry when people make huge claims without backing them up.
08-12-2014, 04:27 PM   #2
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Totally agree with you. Unfortunately there are huge industries making fortunes for immoral people touting alternative remedies.
If these worked, they would be proven through proper scientific study and taken up as mainstream medication once successfully trialled.
Everyone should beware that their problems and desperation do not lead to them falling prey to these people.
08-13-2014, 04:49 AM   #3
UnXmas
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I don't believe diet can cure Crohn's, but I would add that even if scope and biopsy results revealed a person's Crohn's to have gone into remission following a change of diet, that still doesn't mean it was the diet that led to remission. They may have been taking meds as well, in which case it's most likely the meds that led to remission, or the remission could have been spontaneous. There could even be another external cause of the remission that the person is unaware of, or multiple factors working together may be responsible for the improvements.There are endless things to take into account.

That's why proper trials are needed to discover the effectiveness of any potential treatment - there are so many factors to be taken into account, you can only really discover if any one of them is actually assisting the remission by examining multiple cases (i.e. multiple people with Crohn's) and comparing them to multiple subjects who haven't been on a particular diet. Hard enough to do when qualified professionals with all kinds of resources attempt it. An individual's "before and after" scope results is still almost just anecdotal evidence.

So if you're looking for "proof" that diet works, you won't find it - there is no proof that diet cures Crohn's.

Last edited by UnXmas; 08-13-2014 at 07:57 AM.
08-13-2014, 05:40 AM   #4
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I was diagnosed with Crohn's 28 years ago and since then I have had several operations, and different drug routines. I am now on Infliximab and doing really well. But in all that time not one Consulatant / Dr / or Surgeon has recommended a particular diet. The only advice I once had and I still stick to is "if it disagrees with you then don't eat it"
08-13-2014, 06:40 AM   #5
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I hear you. Don't be fooled. Alternative medicine that touts a cure all remidy is big business.
I'm a firm believer in healthy lifestyle and preventative measures. Miracle cures just don't stand up to scientific scrutiny.

Good science makes bad TV.
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08-13-2014, 07:12 AM   #6
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I have had crohn's for 25 years and was in remission for a great 24 years. Thanks to following my diet that i keeped in a journal of the do and don't's section. Alcohol and smoking are the big killers that make symptoms worse. There is no really what you would call certain diet works. It all is determined by what you can tolerate. My diet consists of potatoes boiled, carrots boiled, i stay away from great veggies especially raw basically anything that is raw. i stay away from red meat and anything that is whole wheat or gains. I eat white bread only, white rice, boiled chicken with skin off , even when it's baked in the oven. i eat a lot of fish products especially salmon. My best advice is try your own diet first before taking meds. I am NOT saying don't take any meds I am NOT a Doctor so this is only my opinion. I was on no meds for 24 wonderful years, but on them now only 5-ASA though. But, it has finally flared up once again. i went off and eat everthing i wanted and drank alot camping and now i am paying the price. so, take my word for it. Watch what you eat and stay away from greasy foods, fried foods, refined sugars, processed foods, sodas, and don't to much high carbs. I know many in this forum may have other adivice on dieting, but this my own experiences. any way i hope you find what you are looking for.
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08-13-2014, 07:20 AM   #7
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It'd take more than some pretty pictures to prove anything, we're talking several longterm studies with control groups, regular bloodwork, regular colonoscopies, and strictly controlled diet. Anything less isn't proof.
08-13-2014, 07:51 AM   #8
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I have had crohn's for 25 years and was in remission for a great 24 years. Thanks to following my diet that i keeped in a journal of the do and don't's section. Alcohol and smoking are the big killers that make symptoms worse. There is no really what you would call certain diet works. It all is determined by what you can tolerate. My diet consists of potatoes boiled, carrots boiled, i stay away from great veggies especially raw basically anything that is raw. i stay away from red meat and anything that is whole wheat or gains. I eat white bread only, white rice, boiled chicken with skin off , even when it's baked in the oven. i eat a lot of fish products especially salmon. My best advice is try your own diet first before taking meds. I am NOT saying don't take any meds I am NOT a Doctor so this is only my opinion. I was on no meds for 24 wonderful years, but on them now only 5-ASA though. But, it has finally flared up once again. i went off and eat everthing i wanted and drank alot camping and now i am paying the price. so, take my word for it. Watch what you eat and stay away from greasy foods, fried foods, refined sugars, processed foods, sodas, and don't to much high carbs. I know many in this forum may have other adivice on dieting, but this my own experiences. any way i hope you find what you are looking for.
Sorry if I'm misunderstanding you, but you said you do eat white bread and white rice, and that these were part of the diet you were on when you were doing good, but then you advise not to eat refined sugars and processed food. But white bread and white rice are refined and processed foods.
08-13-2014, 08:20 AM   #9
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Diet has put some people in remission but I think for most people it requires a multi-faceted approach. There actually have been scientific, controlled studies with the SCD diet and it showed to be successful in inducing remission.. But alas it does not work for everyone, the problem is that crohns is an umbrella term and has more than one cause, unfortunately it's grouped as one broad manifestation but that's simply not the case.

http://www.scirp.org/journal/PaperDo...?paperID=19619

Very interesting article if you wish to read it.
08-13-2014, 08:57 AM   #10
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Diet has put some people in remission but I think for most people it requires a multi-faceted approach. There actually have been scientific, controlled studies with the SCD diet and it showed to be successful in inducing remission.. But alas it does not work for everyone, the problem is that crohns is an umbrella term and has more than one cause, unfortunately it's grouped as one broad manifestation but that's simply not the case.

http://www.scirp.org/journal/PaperDo...?paperID=19619

Very interesting article if you wish to read it.
Thanks for the article - I scanned it quickly, but will definitely have a proper look shortly. It sounds like the authors think of Crohn's almost along the lines of how IBS is thought of (except that IBS is based purely on symptoms and exclusion, whereas Crohn's does have objective signs on test results, even if the nature of those test results vary). Do you have any links to the SCD research you mentioned?
08-13-2014, 11:05 AM   #11
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@Joshuaaa

Awesome paper! It is describing EXACTLY what I feel about Crohn's... that it is not ONE disease but just, as you put it, an "umbrella" under which a bunch of different "types" of CD are categorized. This is why there are so many mixed messages about what works and what doesn't.

Thank you very much for that link! I feel as though GI's should be focusing on looking for what "type" of CD a patient has instead of just saying "oh you have CD, here take this drug to stop inflammation" after scoping you and seeing ulcers and inflammation.

I feel as Borody is the only doctor looking at this disease from the correct angle. Every other doctor is attacking it as ONE disease and thus why there has yet to be a cure or even a viable solution for remission that does not involve lethal side effects!

Do you have a link to the SCD research you mentioned?

Thank you for all the replies.
08-13-2014, 12:21 PM   #12
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Hi Joshuaaa, can you post a link or reference the SCD research? I've looked hi and low, including IBD text books with no reference to SCD research .
08-13-2014, 02:00 PM   #13
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i,m sure a good diet is beneficial for crohns but then its good for everyone but i don,t think it cures anything and some of the diets i,ve seen on the forum are so restrictive i,m amazed if anyone could stick them long term.
08-13-2014, 05:01 PM   #14
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Hi guys, I'm on my phone so I don't have the link, I'll try find it, it was a ncb article so it was legit, keep in mind it doesn't cure it, but certainly can stop symptoms, their haven't been trials where they've scoped the patients before and after but they don't really do that even w drug trials, they really use the CDAI which is notoriously inaccurate...

Speaking of Borody, he's actually my doctor, he said to me he's seen some patients get better from scd when all else has failed... Doesn't know how, doesn't know why, but then you refer to that article I posted and it makes sense..
08-13-2014, 06:27 PM   #15
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Yes they do do that in serious trials for FDA approval, along with weekly blood and fecal testing. That's the standard you're held to, you need a several studies of this quality.
08-13-2014, 07:50 PM   #16
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Sorry for the rant, I just get angry when people make huge claims without backing them up.
Fair enough, if feeling better and an improved quality of life isn't enough then you should hold out for a cure (sarcasm intended). I recommend prayer.
Totally agree with you. Unfortunately there are huge industries making fortunes for immoral people touting alternative remedies.
yup, I get a royalty payment every time you buy a apple instead of a candy bar (sarcasm intended)
So if you're looking for "proof" that diet works, you won't find it - there is no proof that diet cures Crohn's.
true, (no sarcasm intended)
But in all that time not one Consulatant / Dr / or Surgeon has recommended a particular diet."
I can think of a few consultants recommending the paleo/SCD/GAPS diets (for example, Dr. Joseph Brasco of the Huntsville Center for Colon and Digestive Disease [1], and he states that his recommendation is based on clinical efficacy).
The only advice I once had and I still stick to is "if it disagrees with you then don't eat it"
This advice is one of the fundamental parts of SCD/GAPS/FODMAPS diets

Do you have any links to the SCD research you mentioned?
There are no studies showing diet 'cures' crohns.
There are a few small studies and thousands of case studies showing that diet aids symptoms, and helps maintains remission.....

Pilot Testing a Novel Treatment for Inflammatory Bowel Disease
"Conclusion: This case series indicates the potential for the IBD-AID to be used as an adjunctive or alternative therapy for the treatment of IBD. Notably, 9 out of 11 patients were able to be managed without anti-TNF therapy, and 100% of the patients had their symptoms reduced."
http://escholarship.umassmed.edu/cts...11/posters/15/

Clinical and Mucosal Improvement with the Specific Carbohydrate Diet in Pediatric Crohn's Disease: A Prospective Pilot Study.
"Impressions: Clinical and mucosal improvements were seen in children with CD using the SCD over 12 and 52 weeks. Additionally, CE can monitor mucosal improvement in treatment trials for pediatric CD. Further studies are critically needed to understand the mechanisms underlying SCD's effectiveness in children with CD."
http://journals.lww.com/jpgn/Abstrac...fic.98269.aspx

Reduction of dietary poorly absorbed short-chain carbohydrates (FODMAPs) improves abdominal symptoms in patients with inflammatory bowel disease—a pilot study
Conclusions
"These data suggest that reduction of FODMAP intake offers an efficacious strategy for patients with IBD who have concurrent functional gut symptoms. A controlled dietary intervention trial is indicated."

http://www.sciencedirect.com/science...73994608001219


Nutritional Therapy in Pediatric Crohn Disease: The Specific Carbohydrate Diet
"Each patient's laboratory indices, including serum albumin, C-reactive protein, hematocrit, and stool calprotectin, either normalized or significantly, improved during follow-up clinic visits."
http://journals.lww.com/jpgn/Abstrac...ease__.22.aspx

CROHN'S DISEASE: MAINTENANCE OF remission BY DIET
"7 out of the 10 patients on the exclusion diet remained in remission for 6 months compared with none out of the 10 on an unrefined carbohydrate fibre rich diet "
http://www.sciencedirect.com/science...40673685914977

This one is a piece of shit as far as scientific honesty goes,
Lifestyle-related disease in Crohn’s disease: Relapse prevention by a semi-vegetarian diet
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877178/
They put people on a real food diet that included meat and excluded any processed foods, grains (except rice from memory), sugar etc and attributed all the benefit to a reduction of meat.
I have edited the conclusion as follows....
“it is reasonable to conclude that the SVD real traditional food diet protected patients from relapse but an omnivorous any old shit diet did not.”
More of my rants on this one here
http://www.crohnsforum.com/showthread.php?t=59617

There is a large study planned,
http://clinicaltrials.gov/show/NCT01749813
Recruitment is underway so why not sign up if you qualify (just to prove them wrong)?


[1] http://www.crohnsforum.com/showthread.php?t=48559
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08-13-2014, 07:55 PM   #17
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Well actually, remicade and humiras primary end points were both a reduction of CDAI in their initial studies, only in later years have they included scope improvements; and certainly not for every patient, just the ones that have done investigatory scopes. Also I don't think any study test cal protectin weekly... Maybe monthly. But realistically, you're never going to have trials with as much scrutinising for diet because there'll never be funding for it.

I'll tag Hugh, he's very well versed in the benefits of a real food diet, and probably has some links to promising studies.
08-13-2014, 08:21 PM   #18
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Hugh, iv asked you this before, but what's your opinion on rice (basmarti being my fav). Iv been cooking it in scd chicken stock, I don't know whether or not itl be good for inflammation or "feeding bad bacteria" but it certainly is easy to digest and doesn't cause me any troubles.
08-13-2014, 08:46 PM   #19
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Hugh, iv asked you this before, but what's your opinion on rice (basmarti being my fav). Iv been cooking it in scd chicken stock, I don't know whether or not itl be good for inflammation or "feeding bad bacteria" but it certainly is easy to digest and doesn't cause me any troubles.
I eat it without problems.
I went very-low-carb SCD for months, then low-carb paleo and then mediun-carb paleo and then added rice in (after reading Paul Jaminet's debate with Dr Ron Rosedale) so i have no idea if it is ok while having troubles.
I've heard plenty saying that carb restriction is necessary to knock back 'bad' bacteria and a few saying that it doesn't matter.
My opinion, if it's tolerated it's ok, but it's not SCD/GAPS.
If i had blood sugar issues then i would rethink this.
I definitely don't think other grains are ok but it's probably due to toxicity not carbs in those cases

Last edited by hugh; 08-13-2014 at 09:30 PM.
08-14-2014, 02:34 PM   #20
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If it wasn't for diet IDK where I'd be now.
Remicade and Humira both failed me, remicade worked for about 1.5 years, I can't prove anything but it's been downhill since I tried Accutane.

Right after college I lost the ability to tolerate a lot of food, despite being on Humira and Prednizone at times. It wasn't immediately apparent to me that there was a dietary link, during the time it took me to figure it out I was down to 99lb.s

I cut almost everything down to chicken and eggs, then slowly added one thing at a time, I was able to target these ingredients for certain cause a reaction:
-gluten
-canola oil
-high fructose corn syrup
-potato
-corn oil
-apples
-peanut oils

There are other foods that cause digestive issues but are not a 'reaction.'

I came off my medications because they were expensive, have dangerous side effects and weren't helping.
I gained 50 lb.s and I've been able to increase my fiber intake gradually, I strongly believe in a link between carbs and disbiosis of the intestines.

I had chronic infections that went away when I limited processed sugars. Infections that failed to respond to aggressive anti-biotic treatments.

As far as proof, I haven't gone back to see my doctor in 2 years, he wasn't willing to accept that the drugs didn't work, and didn't seem to care that I kept telling him I was getting worse, and meanwhile he did nothing.

I'm not cured, but foods trigger reactions, if I don't have those foods, I have no reactions, and no symptoms. They are gone within 24 hours in most cases.
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08-14-2014, 03:46 PM   #21
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All I can say is "way to go" instant coffee.

You took the bull by the horns and figured out something that worked for you.

We have a brain for a reason, and you put yours to good use.

Excellent!

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08-14-2014, 03:54 PM   #22
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It's very hard to prove anything, and as the original poster points out, there aren't any before-and-after pictures.

All I can tell you is what happened with my daughter. She was diagnosed with Crohn's after endoscopy with biopsies, and a MRI. Prednisone helped some but she was still sick. She had a fever and stomach ache every day for four months, lost weight, no energy.

Then we switched her to the Specific Carbohydrate diet. We made no other changes. Within two days -- yes!!! two days!!! -- her symptoms were gone. Next bloodwork was in 2 weeks and were much better, a month later they were completely normal and continue to be so.

This is clearly an extreme example, but to me it shows clearly that diet CAN "cure" Crohn's Disease.
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After four months of little improvement with Pentasa and Prednisone, we tried the Specific Carbohydrate Diet. Almost overnight, all the symptoms resolved. Currently off all meds. Bloodwork is completely normal.
08-14-2014, 05:09 PM   #23
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Fair enough, if feeling better and an improved quality of life isn't enough then you should hold out for a cure (sarcasm intended). I recommend prayer.

yup, I get a royalty payment every time you buy a apple instead of a candy bar (sarcasm intended)
Very mature of you. Seems inflated ego may be a replacement for royalties.
08-14-2014, 05:10 PM   #24
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I am in the same situation as you. I had no symptoms. By the time the did a colonoscopy my ascending colon was nearly closed. They had no idea how I was not in more pain. I was placed on steroids. Then Humira. I thought everything was fine. I had some more tests done and they had to do surgery immediately. My colon had fused to my liver and my pelvic. That was 6 hours of surgery. Have no painful symptoms but have the complications. I am now on Remicade. So please do not take it lightly because you are asymptomatic
08-14-2014, 07:05 PM   #25
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Very mature of you. Seems inflated ego may be a replacement for royalties.
Haha, never claimed to be mature.
If your gonna make rubbish comments then people are gonna call you up on them.
08-14-2014, 09:05 PM   #26
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For me, diet plays a crucial role in my well being. My GI tells me to eat lots of roughage. Following a recent surgical resection from adhesions, I didn't have a normal bowel movement until about six weeks later when my wife made red beans and rice for me. Albeit, there is rarely a cure all, but I know what foods make me better and what foods contribute to a flare. I don't need a controlled study for that.
08-14-2014, 09:50 PM   #27
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Haha, never claimed to be mature.
If your gonna make rubbish comments then people are gonna call you up on them.
So the whole alternative medicine scene is not full of people selling 'snake oil' to desperate people whose lives have been ruined.

I agree that eating sensibly and ascertaining then avoiding trigger foods is beneficial but people do need to be wary as alternative seems to have become a bi-word for unproven.

To call this 'rubbish' shows that with your obvious education of the subject there is also a degree of naivety.
08-15-2014, 12:06 AM   #28
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So the whole alternative medicine scene is not full of people selling 'snake oil' to desperate people whose lives have been ruined.

I agree that eating sensibly and ascertaining then avoiding trigger foods is beneficial but people do need to be wary as alternative seems to have become a bi-word for unproven.

To call this 'rubbish' shows that with your obvious education of the subject there is also a degree of naivety.
Sorry Bloke, the thread is about diet curing crohns, not snake oil potions.

I would argue that it's a pretty screwed up system that would consider diet 'alternative', and a pretty long stretch to lump 'real food diets' in with 'snake oil'.
Sensible eating is by definition sensible but the present paradigm, controlled by industry (food manufacturers, agriculture and pharmaceuticals) does not reflect common sense, it reflects industry self-interest.
Unproven does not mean disproved, and science is just starting to catch up with what a small number of the 'snake oil salesmen' have been saying for hundreds of years (that the immune system and inflammation are directly related to gut bacteria).
Your statement was "Unfortunately there are huge industries making fortunes for immoral people touting alternative remedies." and in the context of the thread (diet) it is rubbish. In the world of medicine and health in general then you are probably right, but they are still a tiny percentage compared to the 'legitimate' scammers selling drugs and remedies that harm and/or do no good.
My naivety was stripped away long ago and i'm probably far more critical (involving skilful judgement as to truth, merit, etc) than you are. I just base my criticism in rational analysis rather than kneejerk reaction.
If someone can avoid potentially harmful medication and surgery through diet then they should try it and actively discouraging people from doing so is fairly irresponsible.
08-15-2014, 01:49 AM   #29
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Don't put too much faith in any alleged proof. Studies or not.

Investigations assessing the prevalence of scientific fraud and/or its impact show that the problem is widespread and serious—to the point of making most of "science-based" medicine a genuine joke.

Two years ago, researchers at the University of Illinois at Chicago's Center for Pharmacoeconomic Research found that nearly 75 percent of retracted drug studies were attributed to scientific misconduct, which includes data falsification, data fabrication, questionable veracity, and plagiarism.

http://articles.mercola.com/sites/ar..._rid=619786280

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08-15-2014, 03:36 AM   #30
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Since on this thread, anecdotes of personal experience of diet helping with symptoms seems to be being used as a substitute for actual "proof", I guess I can add how diet has "cured" me.

For as long as I've had digestive problems, fibre has made them worse. By avoiding most fruits, most vegetables, whole-grains, nuts and seeds, I experience a considerable improvement in symptoms. By sticking to a diet with a high proportion of processed and refined foods (e.g. white bread in place of brown, tinned fruit instead of raw fruit), my illness is much better. My diet includes plenty of plain biscuits, ice cream, white bread, plain cakes and similar things, and I am much healthier than when I tried diets which cut out processed foods, grains, gluten, lactose, etc. and instead relied on fruit, veg, some meat and fish, nuts, etc. The various diets that I tried along those lines made me very sick.

Diet has also cured me on stoma blockages. When I eat too much high-fibre foods - again, these are the foods which are commonly promoted to us as "healthy"; vegetables, fruits, etc. - I invariably get a blockage, and I'm in pain and vomiting for days. If I avoid these foods and stick to lots of processed stuff in their place, I'm cured of stoma blockages. Plus there is more than just the absence of symptoms as evidence of this, as my blockages were determined objectively by doctors.

I've had a look at the Paleo diet, SCD, etc., and they are recommending you eat many foods that will make you sick (based on my "proof" of diet curing Crohn's symptoms); so I would say avoid them.

Last edited by UnXmas; 08-15-2014 at 04:18 AM.
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