Paging Joe

[Polly]

A nutritionist knowledgeable about diet in MC and Crohn's?? Lucky you. I thought that was an oxymoron. Can we clone her?

Polly

[Joefnh]

Polly I have been somewhat fortunate in that area. My second GI doc was quite knowledgeable about MC an even suggested the issue of gluten sensitivity being present even with a negative celiac blood test. My nutritionist Cindy also seems quite up to date with these issues... there's hope yet.

--Joe

[harma]

I don't thinks we have nutritionist's in the Netherlands. If we have them here it will be in Amsterdam, but not in the outside corner where I live.

[Joefnh]

That's too bad Harma, although you do have to find one that understands MC and the unique dietary needs required to treat this disease. I was lucky in my case to find one so easily

--Joe

[kimtg68]

At my son's school they have removed soda machines and replaced the snack machine items with slightly less offending foods. The menu has changed in the cafeteria as well. My son, who is in really good shape physically, gripes that it's not fair because he's not overweight so why should he have to eat healthier foods. I try and try and try to get through to him that even people that are not overweight need to eat healthier. KIDS! But at least they are FINALLY taking a healthier approach to snacks, drinks and meals in our schools.

We got a new grocery story called EarthFare recently and I'm so anxious to visit there and see if I can find foods more tollerable to me. My husband, who still isn't convinced that the proper diet is going to help me, rolls his eyes at me and chuckles when I talk about how excited I am to go in there It's going to be a great thing for me when I find out my intollerances and change my diet and with time get better and THEN I get to say to him, "I told you so" I'm the more stubborn headed between us and usually it's him saying that to me. I believe he doesn't want to believe it because he doesn't want to have to change his diet and knows I will make some changes that will affect him to a degree. Oh well, he could stand a better diet himself. (Said with love).

[JLH]

He doesn't believe us!

[kimtg68]

I know, right? He doesn't believe that someone can have gluten allergies. Or that changing your diet can make all the things I'm going through better. He doesn't even believe that some of my symptoms are even MC related which I've already heard from too many on here that it is. SO on behalf of my PP and naturally for my entertainment as well, I can't wait to prove him wrong!

[JLH]

http://www.huffingtonpost.com/dr-mark-h ... 79089.html

[ant]

History teaches that we are up against huge forces to change the paradigm.

It is very hard to change "establishment" beliefs. A statement like "diet is central to MC" is a challenge to medical "wisdom" and ego, as well as powerful financial self interests, who rely on their control over majority belief (or indifference) to keep their power.

Galileo had similar problems trying to persuade the powers-that-be that the Sun, not Earth, was the centre of the solar system. We are hoping that Dr Fine or maybe Professor Cordain can be our "Galileo", but look at how Galileo was sidelined in his lifetime...

But, I believe that truth will prevail, and hopefully soon. After-all there was no Internet in Galileo's time!!!

Best, Ant

[harma]

Well one one hand, I'm also not hopeful something will change soon, that mainstream medicine will acknowledge the relationship between food and auto immune diseases (or even consider the possibility). I think Dr Fine and Prof. Cordain are pioneers.

On the other hand, 20 years ago there did not exist a relationship between food and cancer. Of course there was, but that was the normal thought. That has changed dramatically. Also than there were pioneers, seen as an outcast. Later research showed they were right, maybe not always 100% but what they claimed pointed in the right direction.

I don't know, what the attitude has been towards heart and vascular diseases over time. But also there nobody argues anymore that food (more as part of a whole life style) plays a major role in the existence of this diseases.

So, of course it will only be a matter of time, before finally the medical profession also will understand that there is a relationship between auto immune disease and food.

I think the main problem in IBD -food research, is that they mainly focus on one food group or one type of food. As a lot of us know here, it is more than just stop eating gluten, soy or dairy or what else. It is not or or or, no for a lot of us and and and. Also, what we know here and what is also emphasized by Gotschall (SC diet) that it takes a "while" before improvement is seen (from 6 months up to 2 years). I am sure most the studies that has been done are over a shorter period. No results within three months? conclusion no relationship.

Even more important, what also plays a role what people don't eat, what is lacking in the food. I have been reading in a Dutch book the last year on bowel diseases in general. Food and auto immune disease follow not always a "one and one is two" logic, it's much more complicated (according to this book). Food in general, our modern lifestyle, to much carbohydrates, fast food, not enough fruit and vegetables changes our immune system. The level of the T1 cells to high in relation to the T2 cell (or the other way around, sorry for my messy depiction of things), that misbalance can cause auto immune diseases. The immune system is in a kind of misbalance or get confused due to a general wrong food pattern. Well research to something like that is much more complicated than just looking at one food component or even one food group. But maybe this is also something Prof. Cordain claims in his book, I am not sure.

[Gloria]

Kim,

Don't feel bad about your husband. I've been at this three years and my husband still doesn't think diet has anything to do with MC. He isn't a jerk about it and doesn't say it very often, but he hasn't changed his opinion, probably because my remission comes and goes. For the first two and a half years, I tried to adapt my diet to his so he would feel like his life hadn't changed dramatically. Now, I eat my meals and he eats his. If he likes my meals, which is very rare, he eats them. Otherwise, I'll occasionally make him a separate meal, or he'll get take out. It's too hard for me to make him many of the meals I used to enjoy. He knows how to cook, but he doesn't seem interesting in cooking for himself anymore. I keep hoping that the day will arrive that I'm in remission and can add more interesting and enjoyable foods to my diet and we'll be able to eat them together again. This disease affects the entire family.

DH loves to eat breakfast out, so after months of not going, I told him we could go this past week. I ate my cream of rice at home first. I couldn't order a thing from the menu, not even juice (I don't drink coffee or tea), which astounded the waitress. I turned the switch off and was able to get through the meal.

Interestingly, we had a joint visit with our PCP and he said DH should be eating like me! DH has diabetes and he is beginning to require stronger meds. If I weren't so focused on my diet, I'm sure I would be trying to manage his better.

Gloria

[Joefnh]

Ant you are so correct and the earth is still flat right?

Working in academia, which mirrors the medical community, I can see that lot of the problem is that new ideas have to get by the 'old gatekeepers' who are generally a 'chosen' few mostly dodgy types that seem to rise to the top that seem to dictate for their area of specialty what will be accepted or not.

If new papers are written expressing undesired or unaccepted ideas (i.e. Diet & MC) they will not pass the peer review process and therefore be mostly ignored. The papers will most likely be listed in an obscure website, but will not be cross referenced or quoted form making the content irrelevant.

Certainly from the patients perspective, diet plays as big of a part or bigger than the medications can.

--Joe

[Polly]

Interesting observations.

Joe, you are so right about the "old guard" who controls the gates in medicine. I'll bet one of the reasons Dr. Fine's research has been stonewalled is that he does not fit the old standard image of a doc. He helps people on the internet; writes, sings and sells his songs on his website; posts photos of himself in jeans and looking buff, etc. NOT the good old boy image, definitely. LOL! And yet, I have checked a number of times, and he has never had an official complaint made about him to the TX Medical Board of Examiners, and his lab is fully certified by all appropriate federal and state authorities. He himself, of course, is fully board-certified in internal medicine and gastroenterology.

Hopefully, one day the ground swell from folks like us will overwhelm the old establishment. Have you heard about change theory? I find it very interesting.....it explains that change happens on a bell curve. First, there are a small percentage of folks called "early adopters", who jump on the bandwagon of a new idea immediately. Then, the second group, which is a bit larger, waits a bit to see how the first group does before it jumps on board. At the other end of the curve are the small number of nay-sayers, who will never adopt a new idea. These are the Flat-Earthers that Ant referred to. Did you know that the "Flat Earth Society" actually exists today? It was a relief to me to learn about this theory because it explained a lot about myself and why I often seem to be out of sync with others. I am an early adopter - if an idea seems scientifically valid and feels right to me intuitively, Ill pounce on it. For example, I am #52,159 on the waiting list for an electric car when it comes out (in fact, the GMC VOLT website actually refers to those of us on the waiting list as "early adopters"). Also I pay my monthly electric bill with "wind credits". I adopted Dr. Fine's findings immediately upon reading them. And so on.

Love,

Polly

[Joefnh]

I would classify my self as a early but cautious adopter. I tend to look at each item and analyze and research the subject a bit longer even though I have convinced myself that's the way to go.

I do like Dr Fines approach and he certainly is a maverick. Overall its people like him that blaze the trail for the rest of us. I have known and had the honor of working with people like him and found that that type of individual generally has been of the highest caliber and highest integrity. I think that the 'establishment' is threatened by that kind of mindset as their actions threaten the status quo that keeps the 'important' people in their place of self perceived importance.

I know I sound a bit cynical, but I have seen too much of this within the academic world.


--Joe

[ant]

When conducting a focus group or a workshop the professional moderator makes sure that the quiet ones have their say as much as the "know-it-all" types, who try and dominate a discussion. Good moderators also pick up on ideas that sound "out-of-the-box" or even absurd, because these are the ideas that, with some further exploration often lead to breakthroughs.

The greatest scientific thinking is "creative" thinking grounded in factual analysis and a search for the truth (not money).

I worry that so much brainpower is being hijacked by big pharma and big agri-business, while true research is marginalized.

Best, Ant