maintaining remission w/o steroids, remicade, humira by diet

Couple things in the works regarding proper research, but majorly - Upcoming Big One(statistically powerful, controlled.)on SCD: https://www.pcori.org/research-results/2016/comparative-effectiveness-specific-carbohydrate-and-mediterranean-diets-induce - This will be an effective statistical proof of the degree of effect of diet.


here is a synthesis of my current understanding:
Due to the insignificance of macronutrient ratio changes or the polymerization of proteins on the effectiveness of elemental/semi-elemental enteric nutrition(all of which require that carbohydrates be supplied as monosaccharides, in the form of glucose, while allowing the total macro percentages of fats/proteins/chain proteins/ carbs to vary), the overlap in effects on markers for crohn’s patients on either EEN or SCD, and the SCD diet's take on carbohydrates(most of which are required to be supplied as monosaccharides, in the form of glucose or fructose) it appears that the usage of monosaccharides becomes a unifying cause of the marker changes across studies. Interpreted in light of the microbiome and NOD2 functionality, it seems that the simplest explanation is that fermentative bacteria are quantitatively linked to inflammation.


references:

Crohn’s SCD studies: 1. Clinical, Specific Carbohydrate Diet: Nutritional Therapy in Pediatric Crohn Disease: The Specific Carbohydrate Diet Suskind, David L https://www.ncbi.nlm.nih.gov/pubmed/24048168
Specific carbohydrate diet for pediatric inflammatory bowel disease in clinical practice within an academic IBD center, Obih C. https://www.ncbi.nlm.nih.gov/pubmed/26655069
Response to strict and liberalized specific carbohydrate diet in pediatric Crohn’s disease Burgis JC. https://www.ncbi.nlm.nih.gov/pubmed/26877615
The Specific Carbohydrate Diet for Inflammatory Bowel Disease: A Case Series
Kadokhar, Samir public: https://www.ncbi.nlm.nih.gov/pubmed/26210084

Supportive of SCD/ EEN overlap :
Exclusive enteral feeding as primary therapy for Crohn's disease in Australian children and adolescents: a feasible and effective approach. Day AS1 https://www.ncbi.nlm.nih.gov/pubmed/16928225
Sustained modulation of intestinal bacteria by exclusive enteral nutrition used to treat children with Crohn's disease. Leach ST1
https://www.ncbi.nlm.nih.gov/pubmed/19145728
5b. Exclusive enteral nutrition in children with Crohn’s disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4462720/#B15
Microbiome Associations of Therapeutic Enteral Nutrition Rajesh Shah1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4245590/
Dysfunction of the intestinal microbiome in inflammatory bowel disease and treatment Xochitl C Morgan
public: https://www.ncbi.nlm.nih.gov/pubmed/23013615
Diet to the Rescue: Cessation of Pharmacotherapy After Initiation of Exclusive Enteral Nutrition (EEN) Followed by Strict and Liberalized Specific Carbohydrate Diet (SCD) in Crohn's Disease. Nakayuenyongsuk W1
https://www.ncbi.nlm.nih.gov/pubmed/28084605
Enteral nutritional therapy for induction of remission in Crohn's disease Mary Zakos
https://www.ncbi.nlm.nih.gov/pubmed/17253452

Genetics: 11. The contribution of NOD2 gene mutations to the risk and site of disease in inflammatory bowel disease Cuthbert AP http://www.gastrojournal.org/article/S0016-5085(02)05677-9/fulltext

Mechanism of crohn's: recognition of cell wall markers in bacteria by our cell's receptors-> t-cells and nf-kb activation. Leaky gut allows these bacterial cells into the body, thereby inducing this response not locally but systemically and chaotically. This is a gross simplification. The upshot of NOD2 studies are that if you've got crohn's, there is a broken recognition protein in the intestinal immune system. This most likely acts by conferring inability of the immune system to recognize either harmful microbiota, or cytokines(inflammatory agents).

From https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4447044/: (note: MDP = muramyl dipeptide; present in bacterial cell walls, bound by NOD2 protein. PRR = pattern recognition protein (as immune system detector))
One major theory of how defective NOD2 leads to CD: normally, NOD2 senses MDP activating a number of innate immune responses and bacterial killing; defective NOD2 leads to defects in these pathways, resulting in persistence of intracellular bacteria and effects on antimicrobial functions in the lumen. Another major theory on NOD2: activation via MDP leads to modulating effects on the innate immune system, including suppression of cytokine effects (for example, IL-23-driven Th17 responses), suppression of other PRRs (for example, TLR-2 and TLR-4 responses), and induction of tolerance.



Current Situation: I have been getting less and less response from remicade over the past 6 months (been on it for nearly 6 years). I experienced a return of bouts of severe constipation about a year or two ago, and wrist/hip/lower back pain a few months ago. I started getting the rib, upper back and groin pain I associate with crohn's bleeding - intense, like fishhooks in the lower bounds of my rib cage - around three months ago.
So, remicade was shot for me - due to time, as far as I know and can share. It was the only variable. I had a bad flare, and couldn't wake up fully or be comfortably pain-free. I was prescribed a big dose of prednisone; I took it. My flare went away the next day. When I hit about half-dose in the taper, my flare came back. I got prescribed more steroids. I'm at a point in my life where I can experiment a bit, so I tried the SCD after reading about the mechanism of action of crohn's.(investigate the role of NOD2, the gene, in maintaining the intestines against bacteria.)

A study showed that over 6 weeks, the SCD diet resolved crohn's flare into remission as effectively as prednisone treatment. So, I did the diet. Google enough, read the 3-4 clinical studies on the diet in crohn's. Worth it, to know the theory and evidence.

I'm a month into the diet, and two weeks overdue for my remicade (that I was mostly immune to.). I've had total resolution of symptoms. I have reacted to a few things the diet lists as ok, (peanut butter, coconut flour), but mostly I believe it is a good starting point.

I recommend taking Stage I and Stage II, and ignoring the baked meat and oils thing and feeling free to fry meats up at the start (because these factors didn't break it for me; success!).

Additional notes: I'm highly stressed right now (job search post-ungergraduation). I have managed both heavy drinking and smoking cigarettes while on the SCD, neither followed by a bad flare (both of these in the past 6 years in any amount have always caused intense, two-four day constipation to me. Have caused ER trips.). The implication is that instead of this formula: (red meat, cigs, drinking, stress -> crohns flares ) the real formula is this: (colon transit time of disacharrides and complex carbs goes up -> crohns flares). Working out(and carboloading afterwards) has in the past triggered flares for me - I can successfully do this on SCD, no problem.

Post Edited (wibblypig) : 7/28/2017 6:30:38 AM (GMT-6)

Now that I realize you mean "reading research" as an approach, I think that's not really worth hearing criticism about.

Post Edited (wibblypig) : 7/26/2017 7:00:15 PM (GMT-6)

I'm in agreement with 73monte. My main criticism is, why not show both sides? these things do not work for everyone and you fail to mention that which is misleading to those who are desperate and extremely ill. For those people it is extremely risky, much more so than any medication, to take a diet approach. There are many who have taken this strategy and gotten either no benefit from it or have been harmed in the long run.

"I am part of the community of people with Crohn's still curious about its management" - Do you believe that those of us who are skeptical of your research are not curious? Thats a little one sided don't you think? Why not show the opposing view point of literature that says these strategies don't work? Also your statements make it sound like you think heavy smoking, drinking and eating red meat are all okay lifestyles. Its nice that the diet has helped you but those habits aren't going to help your health in the long run and your statements seem to condone them to the general audience.

"I'm not reading all that. Sorry. "

I post it for your benefit, ironically. Please don't respond to say something like this, for your own esteem.

Most of you seem confused about how statistics work - I think these comments highlight some statistical ignorance :


"You can look at study after study, listen to success stories, etc, etc, but in the end, the test of time with this approach on you will be the only way to find out if it works or not. "

"why not show both sides?"


I think if you took a step back and thought about how studies work in the sciences, you might find that there is a premise you are missing. I can give you a hint: we are all individuals drawn from a subpopulation with bounded variation. A second hint: why not know a little something about statistics? Showing both sides is expressed in statistical terms inherently.

Post Edited (wibblypig) : 7/26/2017 9:11:20 PM (GMT-6)

It's suboptimal to offer the fruits of your analytical labor for free, only to have them dismissed much less than scientifically, less than even thoughtfully.

I'm not here saying "this cured me!" and wanting other people to say "well it didn't cure me idiot".

So I got feisty, when the first responders are all interested in that kind of thing.

You are lacking critical understanding of the scientific process. Your response to my comment is sad.
i also find it amusing that you are condoning heavy drinking, smoking, fried red meat eating and unhealthy coping mechanisms for dealing with stress all of which have been agreed upon by scientific consensus to be detrimental to ones health way beyond just crohns and yet you are somehow qualified to hand out health advise that no one can question.

Post Edited (Labradorite) : 7/26/2017 9:22:33 PM (GMT-6)

This thread is morphing to being more about forum etiquette than it is a treatment option.

As a new member, you should understand that people come here to exchange ideas, share experiences, seek advice and support each other. There's absolutely nothing wrong with disagreeing with someone. You'll be a lot better off when you come to understand that.

I was the first to respond to you, and there was nothing "critical" in my response. Yet you somehow perceived it to be critical. Seems more like arrogance on your part to me.

Once again, continued success to you.

Hmm. Must admit, I'm not sure what maltodextrin, as a complex carb, is doing in there either. I also don't think, looking at the current ingredients, that's the same as what I had five years ago: don't remember there being any fat in it. By the way, I don't think I had a bad reaction to the drinks themselves. I was already very ill before I started drinking them - they just didn't make me any better. The change in personality probably came from being starved: the drinks were so foul I couldn't actually get 9 cartons a day down me. (And having a family who didn't have a clue what I was going through on the diet didn't help either.)

I swore I would never drink Elemental 028 again and I stand by that. But it reminds me a bit of the Lofflex diet (a low fat, low fibre diet designed for Crohn's patients by a British GI, John Hunter).

nutricia.co.uk/e028/uploads/LOFFLEX_Diet_Diary_Full.pdf

In fact it's designed to be followed after a 2-3 week liquid diet. I never followed it though. The dietitian I had at the time wasn't very knowledgeable about Crohn's and didn't mention anything like this. Although that said, if the drinks hadn't helped, the LOFFLEX part almost certainly wouldn't.

Perhaps if I get desperate enough I might start an elemental diet again but a different one. I'm not sure about drinking drinks with maltodextrin and oil in them.

I tried the SCD diet, to the letter, for several months. Didn't work for me. Glad it works for you.

Interesting you said drinking/smoking hasn't been affecting you, as smoking is known to be very inflammatory for Crohn's. I was originally diagnosed with UC, which initially "flared" 4 months after I quit smoking. When I learned smoking helps UC, I started smoking again but not as much. I found a cigarrette could always calm my symptoms and I rarely flared for years--until I quit smoking again. I could also drink as much as I wanted and eat anything I wanted. So maybe it's not the SCD diet that is helping you. Maybe it's cigarettes that are helping. Are you sure you have Crohn's??

i could not stand on the sideline anymore. First, if this is helping you, then that is great. all anyone wants on this forum is for everyone to get better. Second, everyone with the disease is different so not everything is a one size fits all. third, symptom control and true disease remission are two dramatically different thing. many of us have very little symptoms but active disease. Infact have had two resections from a disease that has never really slowed me down. I have tried everything you have posted and I am on the last medication. nothing has stopped it.

thanks for sharing what you have found. I do read info like this and try to learn. so it is helpful. just recognize how individualized this disease is.

thanks

I have had this disease for over 20 years. so I have had plenty of time to review, research and try different things. medication wise: remicade twice, cimzie, methotrexate twice, humira, now entyvio with methrexate. and I have tried the diets. with me the only real way to know if anything is working is to have a colonoscopy. I have had 15.

keep in mind Cpr and sed rates are not crohn'specific as other things impact these and are markers fro a lot of things.

I am not dismissing your research as it is helping you which is good. I hope it continues to work for you

Following......interested in this conversation.