Healing your gut with Diet

Why do you constantly try to start wars on here Dave, by attacking other people?

No-one says diet doesn't work, only that it is individual and not a miracle cure – and that it is usually most effective as a part of a range of treatment options.

There are people with severe disease who need prompt treatment. You said it took you 8 months to see any benefit from your diet – most severe cases could never wait so long.


Your links are not to scientific research, but rather to blog sites and social groups all containing a mish mash of misleading half-truths.

Telling people not to take medicine is irresponsible (particularly as you yourself take mesalamines.)


Seriously, why do you feel the need to push your SCD beliefs so hard onto everyone?
Your dogmatic stuff belongs to the websites promoting SCD, where everyone claims that it cures every known illness.


Diet is far too personalized to be represented by one narrow minded approach.

I swear by the SCD diet and it has helped me to be symptom free for 8 years and the only med I take is pentassa.

I was diagnosed with cd in the lower colon in 2007 after having two massive and painful rectal fistulas that my GI said would never NEVER heal unless on got on remicade.  The colorectal surgeon said I should get use to living with cetons for the rest of my life because with fistulas this big, they almost never heal. 

Well guess what??   I refused the remicade and I went on the SCD diet with 100% fanatical dedication.  The only med I agreed to take was pentassa which I have had no problems with.  In 2 months after starting the diet, all my bms were completely normal, no more white mucus and no more blood.  By 4 months, both rectal fistulas were healed to the point where the surgeon had to remove the cetons so they could heal up completely.  Both the surgeon and the GI said they never in all there years of practice  saw fistulas as large as I had, heal without remicade.  They said it must have been devine intervention that healed fistulas that big, and I said No!, it was a change in diet and lots of yogurt. :)

To this day I have not had one symptom of CD, absolutely nothing.  In my last colonoscopy a year ago, no active CD was found any where in my colon.

People can bad mouth diets and say they don't work, but I don't care.  It worked for me and I will continue following this diet as long as I live.  

Many thanks to this web site because it was hear I went after being first diagnosed with CD, and it was here I first read about the SCD diet that gave me the motivation to try. THANK YOU HEALING WELL for saving my life. 

Post Edited (NY-Sooner) : 1/13/2015 8:27:53 AM (GMT-7)

I appreciate your post Dave. I'm very enthusiastic about exploring a natural route of healing. Just doing my research so please endulge me if you have any other sources!

There have been numerous anecdotes on HW of people trying the SCD (or similar), controlling their symptoms for a time, only for the diet to stop "working". Some people have had sudden obstructions.

Diet is no more permanently healing of the gut than medication is. This should not be a desperately controversial thing to say, but sadly it seems to be. The simple truth, which few seem comfortable acknowledging, is that Crohn's is often a difficult and intractable disease to treat. That's the nature of the disease and not anybody's fault. The doctors do their best with the inadequate array of medication and surgeries they have at their disposal.

The only drugs that have been documented to be effective for Crohn's are the biologics. This is not the same as saying that the only drugs that are effective for Crohn's are biologics.

Studies on medications are difficult and full of errors, bias, shortcomings. The biologic meds are extremely effective in a short amount of time and have been tested extensively because they have potentially serious side effects.

Other medications that have been studied have typically been limited to short study periods. It is not possible to develop scientific conclusions about a decade-long treatment plan from a 6 week study.

Additionally, establishing criteria for remission or relief is incredibly difficult outside of taking biopsies in follow-up scopes.

All of this is also true for dietary treatment, but with diets there have been even fewer well-done studies. What makes diet hard to discuss scientifically is that it is impossible to control a study participant's diet or to rely on their reporting, unless they are in a captive study. So TPN is documented well (inpatient no doubt) but little else is.

There is a lot of good work going on concerning the microbiome but little of it is developed to the point where anyone can say that they have effective treatment approaches for anything. Lots of hypotheses do not equal results. What you believe and what works for you is not the same as a scientific finding.

In "An Evidence-Based Systematic Review on Medical Therapies for Inflammatory Bowel Disease" (Am J Gastroenterol 2011; 106:S2 – S25; doi: 10.1038/ajg.2011.58), 5-ASA treatment for active Crohn's disease was not shown as effective, but 5-ASA treatment to support remission for colonic Crohn's was found to be unsupported by any study, primarily because there were no studies done on this. The authors recommended further studies.

Additional findings:
Azathioprine and 6-MP are not recommended for inducing remission in active CD.
Recommendation: weak. Quality of evidence: low.
Methotrexate is effective at preventing relapse in quiescent CD
Recommendation: weak. Quality of evidence: low.
Anti-TNF antibody therapies (infl iximab, adalimumab, and certolizumabpegol) are eff ective at inducing remission in ambulatory patients with moderate-to-severely-active CD
Recommendation: strong. Quality of evidence: moderate.
Anti- alpha4 integrin antibodies (natalizumab) are effective at inducing remission in ambulatory patients with moderately-to-severely-active CD
Recommendation: weak. Quality of evidence: moderate.
Anti-TNF α antibodies (infl iximab, adalimumab, certolizumab
pegol) are effective in cessation of fistula drainage in CD.
Recommendation: strong. Quality of evidence: low.
A pooled analysis of antibiotic therapies shows a statistically significant effect at inducing remission and preventing relapse in active CD but these are not recommended as no particular class of drug can be recommended in clinical practice.
Recommendation: weak. Quality of evidence: very low.

Given all this data I persist in following my own thoughts on treatment, with concurrence from my GI and my rheumatologist. I recently relapsed a bit and had to bring Canasa back into my life. It worked to resolve my rectal inflammation. However, if I end up back where I was in 2007 with anemia and joint pain and fatigue and diarrhea, both of my docs will be talking to me about stronger meds.

Have I changed my diet too? You betcha. Would I call it SCD? Not in a million years. But it works for me.

I don't know, Dave, why you are harping on this topic in recent weeks. Are you needing some reassurance about your own choices? When people discuss their disease here there are always voices from the meds point of view and the diet point of view, and most of us do a combination of both. I just don't see the reason for your heightened emotional approach these days.

Dave, I am relative newbie to crohns in relation to many members on this board having only been dx in 2010. I wholeheartedly advocate every person here do what works for THEM. Crohns is very individualized. My journey and treatment is different than yours or NCOTs or anyone else's. It is not my place to say they are wrong or even that you are. Where I do believe you are wrong is implying that those of us that take medicines are somehow simpletons or led astray by our doctors. The FIRST thing my gastro doctor recommended WITH my treatment was consulting a nutritionist to find what works for me. Many will tell you anti inflammatory medicines aren't effective..well, they work for me..entocort doesn't work..funny, keeps me in remission. Everyone here gets a tone because you imply you are somehow smarter than them..you have all of a sudden figured out that Magic bullett and frankly it is offensive. If no meds and SCD work for you then by all means go for it, recommend it even..post about it..I love to read success stories. But please stop implying it is the only way for all. Just as I cannot dictate your journey, please don't try to dictate others.

Gumby I agree with you. My meds may not work for me five years down the road...but until they stop I will have to do my best to enjoy those years. I am a timely working on getting off the entocort. I wholeheartedly endorse a healthy diet. Anti inflammatory food whenever you can. I love foods like strawberries, blue berries..etc..great anti inflammatory foods but many here can't touch them with a ten foot pole. My issue with daves post are the implication that we are niaeve or stupid even to do what we have to to feel good now. When you tell me that hey these entocort may stop working and even work against you I don't take offense..no one knows what this disease will do down the road. Just as I wouldnt push entocort or Lialda onto anyone I would expect posters to have the same courtesy. Honestly there is a world of difference in your tone and the way you explain your approach to food than some others. If someone asks me about my experience I would tell them honestly it may not work for them. And truthfully the same goes for any diet. It is a crap shoot. It may work..it may not. I do hope dave keeps us updated on his success and I even enjoy the information. I like to incorporate new things into my diet as I can. But it is the delivery that many are taking issue with.

dfdavedf said...
NCOT
lol as per my original post

see this? this right here is why people argue with you tooth and nail. you're being arrogant, dismissive, and rude. No one likes to be told they'r wrong (whether they are or not) and people like it even less coming in a package like that.

I've considered SCD. Sure as hell wasn't because of you, though. If anything, you make me more reluctant to try it. But good luck saving the sheeple.

I take meds. I 100% understand and support the taking of meds. I never once said do not take meds. My point is there is a lot of science and thought leading organizations that are producing research and incorporating diet as part of the overall treatment plan.

Regarding me, I do diet and what I understand are low risk meds (pentasa and LDN and yes I have done lots of research on both) and that is my long term plan at this time. I have concluded after my research, for me, diet is a supplement to low risk meds. A way to delay and hopefully eliminate the need for the strong meds and surgery.

Some decide to stop all meds when they are in remission. If they have done the research good for them. I sure hope, like diet and medication, they do not make this type of decision based on a recommendation from a thread on the internet.

There is no single answer, but there are tons more options than simply going to the GI and taking really strong drugs with a 75% chance of surgery and as folks here pointed that out to me, I wish to pay it forward.

I went to the head of GI for a large health provider in the US. He is an amazing doc and very wise. However, he knew nothing of diet, and LDN. In fact he had not seen the most current research re SIBO. I brought all that to him, he reviewed and he did his own research and then together we figured out my plan. Although he was a GI for his entire career and was the head of the department, he admitted that GIs really know very little about Crohn's and treatment. One day he used the term IBS to me. I said, why not just say "I do not have a clue", he agreed.

Mostly how meds are prescribed are based on personal opinions of the doc as the research is so spotty. For example little or no studies comparing tops down vs bottoms up. My gosh if the fact that there has never been a study regarding the optimal taper approach to pred, after the millions(?) who have been on it and the high risks associated with this drug, does not convince you there are gaps I am not sure what would. I wish docs had it all figured out. That they had all the information they need to treat us, but unfortunately they do not, and what is really scary they do not even have a complete picture for big pharma drugs.

My points are 1) this DD is not figured out by the GIs of the world 2) their single focus on the drugs from big pharma have really bad results 3) even the research on the big pharma drugs they prescribe is incomplete 4) there are approaches that leading docs, hospitals and universities are proven to work to limit/eliminate the requirement for really bad drugs and surgery for many 5) getting to a position to decide that you will change everything you eat is not something you should do because I suggest it, or dismiss because someone else says so, but rather you should look at the research and make your best decision 6) people who continually proclaim here that diet does not work and that there is no research should stop it. If they have decided the research is not compelling for themselves great, but then say that or say nothing. Stop saying"there is no research" or "diet does not work" or referring to the research as "BS". 7) If you want to do no research, and 100% trust what ever the doc says or does, great. I get it. But because that is your decision, it has no impact on the amount of research and folks here should not imply it does.

"There is a lot of good work going on concerning the microbiome but little of it is developed to the point where anyone can say that they have effective treatment approaches for anything." If you read the links I posted then you would know that Mayo, Seattle Children's, Rush and a bunch more disagree with you. They have this as a defined part of their healing programs.

"Lots of hypotheses do not equal results." I posted links to a bunch of research. All of it points to a positive impact of Diet.

"What you believe and what works for you is not the same as a scientific finding." What I believe is, read the scientific findings. It worked for me, it is currently working for thousands and thousands. Understand the research and make an informed decision. If you want to give it a try as it might work for you also.

A response that is typical on this site is "You know the ones that went to medical school. Rather then idiots on the internet that will tell you a variety of "cures." In philosophy we would characterize this argument as a "red herring". This means that your argument, does not address my point, but tries to discredit my position by changing the topic. If you are not paying attention you might not notice that Jen just called the teams doctors, who clearly went to medical school, from Harvard, Penn Rush Mayo clinic, Seattle Children's, UC Davis and a bunch more ... "idiots who post on the internet". They did not "post on the internet" they published in scientific/medical journals. This is the response that should stop. No matter how many times Jen uses "BS" and "idiots on the internet" she does not know more than the prestigious organizations referenced above (of course neither do I).

Diet works for me and many. Look at the research I posted as a starting point (or not). More importantly, find research you trust. Then make informed decisions.
Dave

Post Edited (dfdavedf) : 1/14/2015 8:41:32 AM (GMT-7)

Hi Jasanne
When I say diet works for me I mean the following

I went from have a small bowel full of ulcers, as seen by a pill cam, to a colonoscopy and pill cam where there was zero evidence of disease. I have the before and after pictures and the difference is pretty amazing. I asked the doc "If all the evidence you had was the current tests (pill cam, colonoscopy, blood work) could you diagnose Crohn's?". He said "There is zero evidence of disease, so no."

I started SCD at the same time I was diagnosed and started on pred and pentasa, so I cannot give a good answer to your second question. Since diagnosis 5 years ago, I have always been on the diet and some form of med. Just less and less amount and strength of meds.

My personal objective is not to get off all meds (unless there is a cure) but to be on a small doses of very low risk meds. Not saying that this is best approach for all though.

I forget which one, but a few of the studies I posted have a comparison of folks on SCD and folks on meds and the results are pretty compelling. I think, these would better directly answer your second question, more than just my limited experience.

Healing thoughts
dave

Hi Ambling

"Even mild-moderate crohns leaves a little scarring behind (which is seen upon re-examination) so I wonder whether your diagnosis was accurate. Crohns does not represent as a "small bowel full of ulcers".

Honestly I am not sure about this. I can say I have gone to two GIs asking if there is any chance that there is a misdiagnosis. I have asked one a bunch of times. They both said no. I will however talk to the GI doc about what you mentioned (just confirming coeliac and Celiac are the same thing, right?).

I would LOVE if, you are right, but I am almost 100% sure it is Crohn's.

Dave

My first sign of Crohn's was one bleeding ulcer in my small intestine seen on the pill cam. Later they were able to confirm the diagnosis with biopsies. My Crohn's was only located in my ileum. Zero evidence of current disease doesn't mean that there was no scarring left behind. Ambling, many people only have Crohn's in their small bowel. Why would you think this is a mis-diagnosis?? People do actually go into remission.