(No Subject)

To me this seemed like yet one drug company sponsored misdirection. This "maybe", "it might work" "but only pay attention during a flare" is a lie. Flat out. This is what the drug companies want you to believe but it is not consistent with the medical evidence.

There is more and more valid medical research out there that says for a lot of folks (not all) that diet change works. I have read medical research studies on SCD, Low FodMap, and others.

As it relates to SCD, the research I have seen has all been small groups but the results are usually 100% of the folks had some improvement with most, lots of improvement.

A much more correct picture is, diet will result in symptom improvement for many, maybe even most. Some folks go the defined diet route (SCD, Low FodMap, Paleo,..) , others figure it out for themselves. But unlike in the past when there was little research, diet should play a part in every crohnies life, until you have a lot of evidence that nothing works for you (unfortunately it seems there are folks that fall into this category :-(. And for most, if you can find what works for your body it there will be improvement. This improvement will vary from noticeable symptom improvement to complete remission.

The following is some of the valid medical research I was referring to. Some may argue that the groups were small and this is true. However of all the research I have read, I have not seen one piece of research that does not indicate that diet helps many. In fact I personally have never seen research that does not help most or all. And when you add all the small groups you get a valid group.

If anyone has seen research that shows no improvement through diet change it would be a valid counter point to my position and I would encourage to post this to get both sides of the discussion.




The following is not meant to be a complete list but rather just what I could find in a quick google search.

BTW - For those interested in looking at the facts, the first few URLs are from MedPub, which is the best place I know of to read valid medical research



http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1432936/?page=1

http://www.ncbi.nlm.nih.gov/pubmed/2862371

http://www.ncbi.nlm.nih.gov/pubmed/24048168

http://www.ncbi.nlm.nih.gov/pubmed/20150601

http://www.scdresearch.com/current-research.html

http://journals.lww.com/jpgn/Fulltext/2014/01000/Nutritional_Therapy_in_Pediatric_Crohn_Disease__.22.aspx

Hi NCOT

I understand that times have been tough for you, and do not want to add to your stress. I also know you have done your research and have come to your own conclusions, like we all should.

I would not respond except that our conclusions are different and it was through education provided by others here that put me on my healing path so I figure I owe it to others to provide an alternative to drugs. Even though we disagree, I do try to present the alternative in a way that would not cause you stress. Sorry if I do not achieve this objective.

I know you know about both SCD and Enteral nutrition. I do not see them as similar except perhaps they are both diets focused on health and healing. Perhaps I am missing something?

As per the research you quoted. For me this is one more example of research of a small group where the results are way better than drugs. This supports my position that there is NOT one answer, but that every crohnie should include diet as part of their healing until they have tons of evidence that diet does not work for them.

I realize that some folks do not believe that diet can help. Counter positions here are usually I tried and it did not work for me. Or my doc said so, or CCFA said so. Or Mayo Clinic said so. I do not believe in any of this. For me, the only valid counter point would be valid research showing results where diet did not improve symptoms. In 5 minutes I can find 15 or 20 research papers showing improved symptoms and I still have never seen one research paper where it did not help. I am not saying every diet helps but 100% of what I have seen of the "normal" crohn's diets (SCD, Low FodMap, even Low Carb,..) have shown vast improvement.

Healing and calming thoughts

dave

I do try to present the alternative in a way that would not cause you stress. Sorry if I do not achieve this objective

Ah, it's okay. I didn't mean to make you feel that way. Everything stresses me out, including getting out of bed in the mornings, so don't worry <_<.


I know you know about both SCD and Enteral nutrition. I do not see them as similar except perhaps they are both diets focused on health and healing. Perhaps I am missing something?

Well, they involve very different foods of course, but the intention is similar; stopping complex carbs, etc. from reaching the lower bowel and turning off the Crohn's attack of the gut lining. It seems like there is some interest in how the elemental diet affects the microbiota:
prezi.com/78yc0vipekjc/elemental-diet-and-its-effect-on-the-microbiota-in-crohns-disease/


This supports my position that there is NOT one answer, but that every crohnie should include diet as part of their healing until they have tons of evidence that diet does not work for them.

You seem to think that diet would work for everyone, but I still don't think so. There haven't been any large-scale, randomized controlled trials of diets, and there probably never will be: partly because big pharma doesn't care (it's a conspiracy! drugs companies not interested in anything other than drugs shocker), but also partly because the logistics of it are tough.

Therefore we only really have anedoctal evidence to go on. I've been hanging around a lot on the UC board lately, which is far busier than this one. For every person who gives a glowing account of how diet modification helped them, another person will say they tried SCD, Paleo, etc. and it didn't help. Put simply, if it's a choice between surgery and diet, most people will try diet first: most people don't go into surgery without a fight.

I just find it weird, really, that there are such massively varying responses to diet. Cutting out gluten will always work for coeliac disease; following a carbohydrate-controlled diet will always work for diabetes; but IBD is completely up in the air. It's ridiculous. I just feel like IBD is still one massive unsolved riddle and it's just guesswork whether it will stay mild or turn severe, what drugs or diets will work, etc.

Sorry, I got on my hobby horse there... *dismounts* >.>

Thanks for the calming thoughts; I obviously needed them :p

Thanks NCOT

I know there are folks where diet has not worked. But gosh there are so many where it has and as you pointed out the research is on small groups, but all of the groups show such great improvement.

My position is "Every CD person should really give diet a strong try. Step one should be looking at valid medical research not hearsay and opinions. I would encourage even giving a few different approaches a real try if the first one does not work. There is more than enough evidence that diet works for many. Truly sorry if you are not one that diet works for."

This statement recognizes that CD is a crap shoot and that diet may not work for an individual. Diet has helped so many that folks should know not to just listen to docs, who usually know nothing on this subject

Peace to you and all
Dave

Sadly, there's nothing that helps everyone, which is why it's so frustrating and feels hopeless that an actual cure will be found.

Hi Dave,
I have found my problems with foods have gotten worse after each resection. (I have had 3)
I can eat all white or oatmeal bread products, oats, rice, pasta and lean meats. I can eat steaks, but in smaller portions. I seem to have problems digesting larger amounts of red meat, so I tend to eat a lot of chicken, pork (except bacon) and fish. I can NOT eat fried foods at all. Spices tend to only bother me if it is extreme. I only have trouble with milk products when I am in a flare (which has been 5.5 years despite 2 resections) I drink almond milk.

When it comes to veggies, I do well with root vegetables, green beans and well cooked caulifower, and only iceburg lettuce or spinach. I can do some peppers once or twice a week as well as fresh tomatoes. (tomato sauce causes a lot of burn)
I do not tolerate broccoli or peas. Avacado seems to bother me a bit too, possibly the high fat content??
For fruits I can do bananas and moderate amounts of melons, then only small amounts of apple, pineapple, kiwi, dragonfruit, etc. When I eat oranges, I cut them up and eat from the skin and only eating the inner pulp(the juicy part)
I can't tolerate berries of any kind, sometimes even pureed in a smoothy.

Oddly enough I can eat nuts as much as I want with no trouble at all.

The rhyme or reason of why some foods bother and others are fine don't seem to really make sense. There has been a lot of trial and error.

I really do miss my fruits and veggies though.

Tanya

Thank you both for sharing
What a dumb disease. If you eat what I eat you get sick. If I eat what you eat, I get sick.
I think it is cool that you both tried and I am sorry diet really did little for both of you
Dave