The Great Diet Brain Dump

[David]

There is as of yet no perfect diet for people with Crohn's Disease, Ulcerative Colitis, or other forms of Inflammatory Bowel Disease? Why?

Because there is no perfect diet for people with Crohn's Disease, Ulcerative Colitis, or other forms of Inflammatory Bowel Disease.

The more I learn, the more I realize that there are countless variables that play into what diet is right for what person. And I get the feeling that those variables are often changing as well. For example, the following variables would affect what diet works for you:

- What specific disease you have
- Specific location(s) of the disease
- Severity of the disease
- Pre-existing food sensitivities
- What medications you're on
- Vitamin deficiencies
- Mineral deficiencies
- Digestive enzyme deficiencies
- Surgeries such as resections, gall bladder removal, etc
- Bacteria present in your system
- Intestinal motility

And the list goes on and on and on. That we try to create a single diet for IBD is infinitely too simplistic in my opinion. What I'm interested in doing is, over the next weeks, months, and, well, likely forever, is try to figure out what as many of those variables are as we can. As we determine what those variables are, people might be able to determine if they fit those specific variables. And if they determine that they fit those variables, they can contour their diet appropriately based upon the best science available. For example:

Crohn's Disease patient has active inflammation in their terminal ileum, chronic diarrhea 6-10x/day, takes 40mg of prednisone a day and 50mg of Imuran. Disease is non-stricturing, slightly iron deficient, B12 is 185, deficient in lactase, blunted villi, increased intestinal mast cells, severe GERD, hydrogen breath test positive for SIBO. Hates brussel sprouts and fish

How amazing would it be if that patient is one day able to enter all that data into some software and out pops a diet plan that is contoured specifically to all those variables? No, science doesn't know how to handle all those variables dietarily, but there ARE many answers as well as theories and we can compile what is known.

Anyone with me? Anyone want to start dumping all known variables, studies, well sourced diet information, etc into this thread?

 

[David]

Variable Dump Starting:

Type of Disease

Crohn's Disease
Ileocolitis
Ileitis
Gastroduodenal
Jejunoilitis
Crohn's Colitis
Granuloma positive

Ulcerative Colitis

Microscopic Colitis
Lymphocytic Colitis
Collagenous Colitis

Mastocytic Enterocolitis

Severity of Disease

Strictures
Locations

Fistula
Types and locations

Medications
Type and dosage

Current symptoms
Diarrhea
Constipation
Abdominal Pain - location
list others

Scarring - what is damaged

Extraintestinal manifestations

Age

Genetics

Bacteriotype

Blood type

Surgeries

Vitamin Deficiencies

Mineral Deficiencies

Other nutritional deficiencies

Other present diseases and disorders

Digestive enzyme deficiencies

Choice of diet (such as vegan/vegetarian)

Pre-existing food sensitivities

Current supplements

 

[David]

Another placeholder

 

[David]

One more

 

[David]

Last one, promise

Anyone interested?

 

[handle]

Completely agree with your premise - too many variables for one diet alone!

And to add to the complexity, people's individual 'taste' for foods is important. The mental feedback from eating (eg. whether it is pleasurable) has a profound effect upon the digestive processes.

David - it is a brave and noble mission you are proposing. And that's also what people say to a politician when they think the ideas are unlikely to succeed!

My ileal restrictions (from surgery), excessive output, and vegetarian leanings, mean that I supplement a basically low fiber regimen with Fortisips and electrolytes. Every once in a while I push through some whole foods, as my cravings demand it.

good luck.

 

[David]

Hahahah! I've been told many times in life that I won't succeed. I love when people tell me that as it makes me work that much harder I realize that's not specifically what you're saying, I understand that you can simply comprehend the enormity of a task like this as you've been researching this stuff for a hell of a lot longer than me.

But... there's no harm in trying. And in my opinion, if we make a little progress, we can then automate it with the help of our amazing programmer. And at that point, we might attract the eyes of researchers (people love jumping on board something cool, it's the people who get it off the ground that make the biggest difference) and it could REALLY take off.

It's the collective intelligence, wisdom, and experiences of communities passionate about specific problems that, especially with the help of technology, can solve seemingly impossible problems.

 

[David]

Oh, and your taste for foods statement is very interesting to me and that should definitely be a variable. We'd need to research what happens physiologically when we consume something we enjoy and when we consume something we don't. Very smart Handle

 

[GFinDC]

Placeholder

Hi David,

Throwing my info out for the masses, in case it might help.

What specific disease you have:
I have Celiac disease, not Crohn's. Thyroid cyst and nodules

- Specific location(s) of the disease
small intestine, thyroid

- Severity of the disease
Severe pain before diagnosis and starting GF diet.

- Pre-existing food sensitivities:
My bad list is: gluten (wheat, barley, oats, rye), dairy (lactose, casein), coffee, tea, carrots, garbanzo beans, soy, turnips, tomatoes, peppers, potatoes, (nightshades), coconut, licorice, grapes, alcohol, melatonin. I avoid sugar and don't drink sodas. I do use Stevia.

- What medications you're on:

Supplements:
glandular thyroid, cal-mag-zinc or cal-mag-D3, selenium, ginseng (for circulation), B-12, multi-vitamin, cinnamon (for blood sugar), mastic gum (stomach ulcer), probiotics, Betaine HCL.

When reacting:
DPP-4, marshmallow, peppermint (for gas), okra, aspirin, probiotics, mastic gum.

- Vitamin deficiencies Vitamin D as of a year ago, still low after supplementing for a year.

- Mineral deficiencies: unknown

- Digestive enzyme deficiencies unknown, but I take Betaine HCL and digestive enzymes when needed.

- Surgeries such as resections, gall bladder removal, etc: None, except for an elbow injury.

- Bacteria present in your system: probably lots, I take probiotics.

- Intestinal motility: Good now, previously poor.


Diet: I am on the gluten free diet for 4.5 years and eat 90% whole foods, Rarely eat out. I eat mostly food I cook at home.

Changes, I am considering trying rhodiola soon to see if it does anything helpful.

Recently I have been able to eat cheese and gluten free bread so my list has started improving. I think the improvement is mainly due to my stopping all alcohol, first wine and then a few months later all alcohol.

 

[Catherine]

Or ones like my dayghter who has constipation not diarrhea.

 

[Beach]

I think that is a wonderful idea. In the medical profession as most of us have undoubtably experienced, hospitals tend to be places to go for procedures and to receive drug prescription. And while those treatments have been helpful for many of us, being left out of the picture is the importance of nutritional strategies for dealing with our condition. It is on chat forms such as this that we have a special opportunity to learn about dietary information, along with sharing our experiences on what works and what does not.

Thought to add that not only would it be helpful to have a computer program or I think also special reports written on strategies to try for calming and maybe even solving our bowel disease directly, but also to address common complaints experienced, such as:

* Strategies to increase energy levels
* ideas for over coming constipation
* Ideas on how to put on weight
* what can help for loosing weight
* strategies for dealing with dental problems/ how to prevent cavities
* what can help for strengthening bones.

etc. Just my thoughts this early morning.

 

[Susan2]

Hates brussel sprouts and fish

I'm not sure that this type of feeling should be taken into account.

Look at the "Sardines" thread and the number of people on there who didn't eat sardines because they thought that they didn't like them, but have found that eating sardines has had an immediate positive effect.

 

[David]

That's a good question Susan. While I wrote those in jest, there is an important variable there. Handle brought up the idea of the physiological response we get when we eat something we like. How important is that neurotransmitter, hormone, and chemical response versus eating a food that has highly beneficial qualities? It's something worth researching and various weights could be applied to the variables in the overall algorithm. For example, if sardines are found to be HIGHLY beneficial they could have such a heavy weighting in the algorithm that even if the person states they hate fish that they are suggested anyway with an explanation.

 

[Lisa]

I bet that is could be done!....

There are programs out there that use variables to come up with answers - for example, one that I have used is for determining what type of substance you are dealing with (drawing from a list of thousands of possibilities)....the more info/descriptors you enter the more specialized answer you get.....

No idea how it is written, but I bet a computer geek could figure it out!!!

 

[David]

Who (our programmer) and I have written various algorithms in the past that took into account a large quantity of variables and spat out data based upon it. That will be the easy part as he's a genius. The hard part is finding the variables and data that determines how those variables should be treated with diet.

<43> If villi = damaged print Diet Column A, B, C
<44> If prednisone = yes, x2 43B
<45> If prednisone = yes != 43C
<46> If terminal ileum resection > 10cm != 44
<47> If terminal ileum resection > 10cm check B12
<48> If B12 < 350 print safe B12 index
<49> If B12 ? print B12 test suggestion

That's where the hard work comes in. But fun and interesting in my opinion

 

[CLynn]

Fantastic idea, David. In the 24 years that I have knowingly had Crohn's, I have never kept a food diary. Partly because I had a GI who told me only this..."If it bothers you, don't eat it". I saw the man for years, till he moved out of state, and don't think he was being flip at all, just think he knew what we all know, what bothers each patient will depend on their particular case. Not to say there weren't times that he restricted my diet, we all know that HAS to happen sometimes. And I find what might bother me today, might not in a day or two.

 

[David]

And I find what might bother me today, might not in a day or two.

That's not uncommon and I think it's an important variable. I just have no idea what variable it is. Maybe the state of the epithelium which can fully repair itself in days. I don't know. Something to research and ponder for sure.

 

[CLynn]

Well, I may just start the food diary to see if it helps with what you are doing at all.

 

[notfullyfathomed]

I think this is a fabulous idea! One of the most encouraging things I've heard from a doctor recently was in a CCFA presentation -- he was talking about how our medication approaches are more of a broad approach (he may have said "sledgehammer"...but I could be editorializing a bit), when we know that IBD can be really different in different people. I can totally buy that we are moving in the direction of specialized medication, and, hopefully, diet.

To take baby steps -- I've been doing a lot of reading about diet, and the most helpful thing is to see people's meal plans for about a week. I think it's easy to say that you follow such and such a diet, but that might be exactly what you do. And it might not be all of the elements of the diet that are working for you, so having people following multiple different diets would allow us to see commonalities? So maybe what CLynn was suggesting and also get what people actually ate for a certain amount of time?

 

[David]

Thank you all for the encouragement. I've begun a variable dump in the second post. Feel free to reply with variables you can think of. I've picked through each of your posts so far for ideas and will continue to add more in the coming weeks and months.

 

[kllyeve]

I was reading about the FODMAP diet and one of its theories as to why some foods bother some days and not others is that the total amount of fermentable sugars is varying in the person's diet from one day to the next. So one day you eat food "x" and you are ok, but the next day you eat food "x" as well as food "a""b" &"c" and the second day you have crossed a threshold that results in symptoms. It also explains why some of us can't seem to pin down our problem foods.

I am ordering a book on it in April(its release date) and hope to learn more. In the meantime, I am looking at some of the websites explaining it. Looks interesting, but I will miss wheat and dairy.