An idea how we can all as a group contribute to solving this UC and Crohns problem

I was just thinking tonight that rather than us sifting through endless study after study and waiting for researchers to tell us things like salt may be a contributor, or this bacteria strain or Nitric Oxide, or well... the list goes on and on.

What if we reversed this process?

What if we as a group made a list of very specific things on a spreadsheet that have triggered a major flare or reaction. Now I know everyone is different - but just the same, every recipe is as well, same with the contents found within the ingredients. So what if we did it like this: A specific example for me:

Example 1:
Food Source: Starbucks Multgrain Bread in their Protein Bistro Box
Reaction: Within 8-12 hours I'll have putrified, loose stool, sometimes mucus, trace blood
Upon removal from diet: Symptoms clear to whatever state I was in before consumption

This happens every time I've ever tried to eat this - yet I can eat other multgrain products at times and in small quantities with little or no effect.

Example 2:
Organika Calcium, Magnesium, Zinc with Vitamin D3
Reaction - Within 24 hours I get the return or onset of very loose stool and sometimes intense D
Upon removal from diet: Symptoms clear to whatever state I was in before consumption


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The logic being that if others have specific product that cause a similar type reaction then we can look for some common trigger foods between all of us and as a group look into not only the ingredients, but what other additives, vitamins, minerals, chemicals etc are found in them and see if we can flush something out. Cross reference this to studies and research. SO we become the lab rats I guess.. again in an attempt to help flush out some culprits.

Perhaps we can limit it though to only very specific things that cause a very severe reaction within hours of consumption. Not things like Fruit or Grains seem to bother me at times etc.

Would there be any interest in this? Or does anyone have some ideas how we could do this? I think we should add probiotics and supplements to the list as well as people seems to have very severe reactions to those at times.

Just thinking out loud really... But I honestly think if we put some effort into it we may be able to flush something out so to speak ;)

Mark

I tired to istigate a food list with voted values of 1-10 or whatever, as in harmful to helpful, but it got shot down due to the "everyones different" thing... I still think its a good idea, for supplements also, but the variables are immense, and say someone has some emotional attachment to something or an idea, like being a militant vegan, they might "vote" against animal products and throw off the truth... Dont know just thinking out loud too.. Dont mean to discourage the idea however. Just pointing out some of the complexities and what not. But I do see the value of the concept.

The power of numbers is here and something good may come of it. I'm all for the concept, but don't have anything specific to contribute. After 18 months maintaining a detailed food, herb, and vitamin journal, I had no luck determining a single trigger.

If you don't have a background in data collection and analysis, I will recommend investing most of your effort upfront to determine your data sets, data relationships, collection methodologies, etc. It sounds like the start of an adventure...

Ok - I'll make a quick spreadsheet or something perhaps.

Again though - It's not the food or type of food in general that I'm actually after... It's the very specific brand that is important. And this has to do with what is "actually" in the food or "source" i.e. what specific chemicals and compounds both natural, additives, quantities and so on. That's how it'll flush out.

If there's a common and specific brand and/or type that sets people off - then that's where to shine the light...

So it real easy actually. That's what got me thinking of a group approach.

Food/Supplement Description:
Brand:
Reaction:
Upon removal from diet:

Something easy where we dig deeper once we have collected some info.

PS

OM - your quite the trooper...

@Mr Natural - Was there anything specific that once you ate a few hours later or the next day you reacted and basically said wow... I'm not eating that again... That's sort of what I am looking for. Even better if you actually tried it again and said wow... never again, this time i mean it :)


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@ PalaceDan - That's what I'm thinking so it would look like this:

Food/Supplement Description: Oregano
Brand: Basic Dried - no specific brand
Reaction: Painful and intense D
Upon removal from diet: Symptoms clear to whatever state I was in before consumption

So now... if one or more people have this same reaction to Oregano then there's a commonness for lack of a better term. I know there's others that react to Oregano as well.

So now, what does oregano do to the body? What effects does it have on NO, or as an antibiotic, or ROS etc etc etc...

Then we look at the other foods on the list for the very same thing...

Eventually the foods loose importance... It's what this food or source does to your body that is the same or shares common traits with all the other severe trigger foods for other people... So this is why the brand and ingredients eventually come into play.

Hope this makes sense.. Sometimes it's hard to type this stuff out.

diet: 80/10/10 or 30 bananas a day diet
reaction: UC diagnosis and symptoms after one month on diet
stopping diet: UC forever. thanks

supplement: florastor probiotic
reaction: tons of diarrhea and increased frequency
upon removal: my bowels normalized after a week

food: kale (in any form)
reaction: tons of green diarrhea
upon removal: no green diarrhea

mark, thanks for saying that. things aren't so bad anymore UC wise. i'm mainly just too anemic and that causes most of the bull crap (major energy zapper). i think since i'm so strict with diet that it works in my favor. i just don't even like taking chances with non paleo/SCD foods. anything that can keep me away from the toilet more often than not is totally worth it in my book.

Heres my train of though. Combining everyones thoughts into a spreadsheet is tough. Catogirization, even harder. Also I have doubts well even find anything meaningful. That being said i do agree we should try!

Few things:

1) someone should draft up something preliminary then issue for review by everyone
2) only one or few people should keep official copies and be allowed to change or update the sheet (google drive anyone)?

Im up for being a keeper/reviewer, though I do not have time to start anything preliminary

What about things that when added seemed to help you? I for one haven't seen anything cause such a rapid effect on me. Or if it did it was hard to notice.

Hey mumbles.. That's actually a really good idea as well..

We know better than the researches and doctors what effects us in both positive and negative ways. It would be interesting to compare both (positive and negative influencing products/foods) and look for a similar pattern, ingredients, chemicals etc that seem to help or hurt. Again the actual product that helps/hurts isn't so much important as what it does within your body and what it's made out of.

Food/Supplement Description:
Brand:
Reaction upon introduction to diet:

Something like the above to keep it simple at first.

Then we can look at all the positive ones and see what sticks out. Like all of these foods/supplements effect Nitric Oxide or Calcium Levels or Bacteria in a specific way etc.

That's what I'm getting at and finding it hard to say - Is there any one or more specific properties of positive and negative influencing foods that really, really, stands out i.e What I mentioned in the previous paragraph or sentence or whatever lol.

At the same time it would give us a cool reference list when done to post for people to look at and see what food seem to help and what foods seem to trigger...

I sincerely appreciate everyone's effort on this, but maybe I'm not seeing the light on the full purpose since after all for me there are other factors that contributed to me getting IBD.

First and foremost I was a teen when I went on BC pills (a very highly suspected link to crohn's disease) shortly after I started getting the perianal crohn's skin tags but they were misDX as being hemmies, they would come and go on their own until after I had my first baby at 23 yrs old (pregnancy/hormones again already linked to IBD) I got sick when she was 16 months old. I was also a smoker since the age of 14 and quit and started again many, many times over the years but got really sick when I quit 10 yrs into having IBD so I started again but smoke very little a day.

I was fed fairly healthy meals but as a kid my dad spoiled me with lots of candy (his way of making up for my mom being such a hag lol) and as a teen, still ate healthy home cooked meals but also a ton of junky foods (so-so on the fast foods though, much more on the junky foods) specifically these things;

Mccaine's chocolate cakes, I would easily sit and eat a whole cake right out of the package in one sitting...I had a great metabolism, could eat whatever I wanted and as much as I wanted and wouldn't gain a pound.
Lot's of peanutbutter and jam sandwiches, betty crocker cakes that you baked in the little bake pan it came with (don't think they sell that anymore)... Lot's of chocolate bars, chips and sugary candy (like Fiz and stuff), chewed lots of gum (bubble yum mostly).

I can't remember all the crap I ate though, the names of everything and all that...I was a teen in the 80's and that was a long time ago.

Plus my mom ended up getting UC in her late 60's after I already had my CD so even though mine was triggered first I'd say there's a genetic factor in my case for sure...and the crap I ate and the fact that I smoked and took BC pills all are likely my triggers since research strongly believes it's more than likely that setting the disease off in motion would likely have more than one environmental trigger involved.

With some help genetically from my mom, I guess I did this to myself.

I hate to be a spoilsport but I do not see any such trend in my case. My diet has been fairly healthy throughout. I was in excellent health until I was diagnosed with UC and Migraine.

Another spoilsport comment, you will not get anywhere with such data. You will have too many data points with no correlation. You will not be able to calculate any concrete p-value to ascertain your conclusion. It will be very good unscientific study though. My strong belief is, the answer sits in our genetics and even that is not very easy as just a mutation. I believe, its more like epigenetics.

I really see no difference with my diet whatsoever. Other than avoiding raw veggies altogether, I must limit cooked veggies, fruits, and fiber. Too much of any gives me problems. Small amounts are ok. I was having trouble with high histamine foods but after taking the digestive enzyme DAO I have no problems with them anymore.

CanadaMark

You have good intentions and the group information may be interesting but...here's the issue (as I see it): no medical professional I've ever dealt with wants this information. The doctors we see are "dispensing" doctors (I made that term up so don't google it). They diagnose what form of IBD we have and then dispense the AMA-approved meds for that. When we say that med didn't do anything or is giving negative effects then they change to another med.

I have yet to meet a doctor who wants to discuss what foods cause problems or what may have brought on my IBD. They are not trained or paid to do anything other than "treat" our disease. I got pretty frustrated that my doctors were not really interested in getting my feedback until I finally understood this fact. They "treat" me, they don't cure me.

Research scientists may be interested but they are pretty far removed from actual UC'ers except in trials and again not much interaction between us. In other words we don't get to give input except the input they have decided they want.

I finally understood that if I wanted to get better than my last 10 years of ineffectual medicine I had to quit being a patient and become my advocate, investigator, dietician and researcher.

I wish you well and would be glad to give input if you come up with some form to fill out of good, bad and ugly foods. I think medicine could benefit from groups of people like us who know our disease better than anyone. I've learned a lot on this forum that has helped.

Post Edited (imagardener2) : 3/11/2013 2:48:18 PM (GMT-6)