My Story

Polly · Post by **Polly** » Thu Mar 10, 2011 9:27 am

Mornin'!

Kari asked me some questions on another thread, and I thought I'd start a new one.

I have the dubious distinction of being the very first one with multiple intolerances on this (original) board.

It was so lonely and frustrating. It seemed like every newbie got better by eliminating gluten or gluten/dairy within a few weeks or months. I couldn't figure out why I wasn't improving. I had enterolab testing that showed gluten and yeast sensitivity (other tests were not yet being done).

I started the GF diet within a few weeks of my MC diagnosis 10 years ago. My GI doc had put me on asacol, which did nothing (Entocort was not yet available). After a few weeks on asacol, she wanted to put me on prednisone, which I declined. Went home, searched the web and found Dr. Fine and the original MC website. And TADA - learned about the gluten connection. Never looked back. Noticed much improvement within weeks in terms of frequency, urgency, aches and pains, and bloating, but it took 9 mo. to see a fully formed BM. Along the way, I discovered other intolerances on my own (dairy, soy, chocolate, carageenan, etc.) and eliminated them. So, actually it was a long time before I saw regular BMs consistently.

And you want to know a secret? Until the recent MRT and LEAP diet, I have never had consistently perfect BMs. It was good enough control during those 10 years that my daily life was mostly unaffected. But I was unknowingly still eating things daily that were causing me to react. Example - I always thought a salad was the safest thing for me to eat at home or when eating out. WRONG. I react to tomatoes, cucumber, celery, and carrots. And yellow squash of all things. I can honestly say that my gut has felt calmer in the 6 weeks I have been on the LEAP diet than any other time in the past 10 years.
I have a "new normal" now, the bar has been raised!

So, in my case, I never took Entocort or prednisone, and I went GF within weeks of my diagnosis (I had been having symptoms only for a mo. or 2 before the colonoscopy). Then over the ensuing months/years, I eliminated other main sensitivities. Another thing that helped was going mostly paleo about 3 years ago. Since then, I have avoided all grains except rice, all dairy, and all legumes. So this probably minimzed my exposure to lectins and helped keep the inflammation down.

Kari, this was a lot more than you bargained for. LOL!

Hugs,

Polly, who is SO happy to know others (FINALLY) with multiple sensitivities

Kari · Post by **Kari** » Thu Mar 10, 2011 10:30 am

Polly,

Thank you so much for taking the time to write your story. One of my favorite things about the PP is to get to read about other people's MC journeys. You have pretty much confirmed my thoughts of what you went through. I didn't think that you could possibly have attained perfect BM's after your first experience with it. At this point in time, I have had only a handful, for which I am very grateful, as I now know that they are attainable!!!

I'm also glad to hear that you happily went on your way with your life when the worst symptoms seemed to be under control. This is pretty much what's happening with me. I do believe that since I went untreated for so many years before discovering the diet connection, it will take time and patience to see consistently normal BM's. I'm willing to live with something less than perfect as long as I feel well and can enjoy my life (Maggie's footnote comes to mind :)).

MRT/LEAP is also very successful for me, and I highly recommend it to anyone trying to figure out multiple intolerances. After I eliminated all reactive foods from my diet, my average # of BM's decreased to 1.38 per day (yes, I'm a numbers person:)). Since I've lost so much weight, I'm very focused on getting enough calories at this point in time, so I'm probably eating too much fiber (such as well cooked pinto beans and fruit).

I'm also so grateful for the support here - it must have been soooo hard to be the only one struggling with multiple intolerances. So glad that you've finally found a tool that is helping you with refining your diet. Don't you find that although the transition is a little difficult, the rewards and lack of uncertainty about what to eat far outweigh it? My tastebuds have changed immeasurably lately, as I'm eating so many foods I never cared for, but it's all starting to taste good to me, as long as I know it's safe.

On a final note, yesterday I made my first stew - so soothing and delicious - can't believe it took me so long to do it.

Thanks again for sharing your story - believe it or not, it's helping me feel less of a failure.

Love,
Kari

Gloria · Post by **Gloria** » Thu Mar 10, 2011 12:40 pm

Polly,

You've truly been a pioneer and an inspiration to all of us. You have always been the board cheerleader.

When I read about your struggles, I don't feel so alone. I appreciate that you shared your story; it shows that we can live with less than perfect BMs and still continue to live a normal life. We don't have to feel like failures.

It is amazing to realize that foods we thought were safe had been working against us. I never would have suspected chicken were it not for the MRT testing. Ditto for cucumbers, oregano, cranberry and several other foods.

Gloria

JLH · Post by **JLH** » Thu Mar 10, 2011 1:26 pm

A "handful" of perfect BMs made me LOL!

Sorry I am just

.

Gloria · Post by **Gloria** » Thu Mar 10, 2011 1:44 pm

Polly wrote:Until the recent MRT and LEAP diet, I have never had consistently perfect BMs.

This is very interesting in light of your recent colonoscopy which showed no sign of MC. Can the conclusion be that even though MC is no longer present, we can still have reactions solely due to the foods we eat? IOW, healing of the gut doesn't play as big of a part as we've thought; it is the food that we eat that affects our reactions, regardless of the state of our gut.

Something to ponder...

Gloria

Polly · Post by **Polly** » Thu Mar 10, 2011 2:07 pm

Interesting thought, Gloria.

You may have something there. We'll have to see what Mary Beth says. I think she told me that anyone can have food reactions on the MRT. I wonder how many reactive foods a control (perfectly healthy person) would have. Do you think all foods are potentially seen as antigens (foreign invaders) to different degrees by the body's immune system? If this is true, I wonder how it fits into "the scheme of things"? IOW, wouldn't it be contrary to survival for all humans to react to foods, especially those considered nutritious? What would be gained?

You got me thinking!

Kari,

I'm almost afraid to ask, but how did you figure out 1.38 BMs per day currently? I'm terribly impressed, BTW!

Joan,

You are a hoot! Come back and post again soon!

Hugs,

Polly, the cheerleader

Kari · Post by **Kari** » Thu Mar 10, 2011 2:54 pm

Joan - glad you got a good laugh - laughter is the best medicine!!! In hindsight, it does sound a bit hilarious

- only a fellow MC'er could relate.

Polly - ever since I went gluten free last July 16, I have kept a "poop log", faithfully recording my BM's. So all I do is add them up for any period of time and divide by the number of days in that period, and VOILA - there is the average

.

On the topic of everyone reacting to food to some extent, don't forget to factor in what the emotional climate does to the BM's. There is so much going on in the body all the time, making any kind of homeostasis rather an exception than a rule IMHO. Everyone I know has gut trouble from time to time, whether by over eating, eating the wrong thing, or being worried and upset, etc. I'm also curious about Mary Beth's thought on this.

I suppose if there was such a thing as a perfect body, nourished by perfect food, in a perfect environment, there would be a string of perfect Normans

. The only human being I know who seems to be capable of this "perfection" is our very own Gloria (hope you take this in good humor Gloria) - I do so admire your achievement!!! Since you're part Norwegian, I PERFECTLY understand - we seem to be a bunch of perfectionists

.

Love,
Kari

mbeezie · Post by **mbeezie** » Thu Mar 10, 2011 3:53 pm

Kari,

1.38 is a really good number! I had thought after the coconut fiasco you had abandoned MRT, so I am glad to hear you are back on it and it is working for you. I also have always eaten a bit more fiber than maybe I should have because I love fruits and veggies.

Gloria and others,

Polly's experience (and mine too) shows us that it is possible that food/chemical antigens (or viruses/other stressors) can be the triggering event and MC is result, not the other way around (MC doesn't cause food sensitivity - I think the inflamed colon is from the triggers). Food sensitivities remain after the gut is healed as we all know. But gut healing is important. I was far more sick initially and had many more symptoms than I do now, even when I eat a food antigen. Check this graphic out http://www.susanlinke.com/How%20Food%20 ... mptoms.pdf

Mary Beth

Gloria · Post by **Gloria** » Thu Mar 10, 2011 5:29 pm

Hmm. I don't know which picture has the graphic.

Kari,
I chuckled at your description of me being a Norwegian perfectionist. I am a perfectionist, of course. I didn't realize I could blame it on my ancestors.

Gloria

mbeezie · Post by **mbeezie** » Thu Mar 10, 2011 5:53 pm

Sorry Gloria - I fixed it.

Polly,

Anyone can show reactives on MRT but in a healthy person there isn't as strong a correlation with symptoms as in an sick person. I am guessing that it would be wise to avoid those foods (but who would test if they weren't sick?). Why wait for some event to activate the food sensitivity/symptoms. This is the approach I took with my son. I did MRT on him because he would get occasional D even after going GF/DF. He came back with quite a few reds reactives, but it was only corn that causes his D - we don't see symptoms from the other reds, but we still avoid them.

Mary Beth

Kari · Post by **Kari** » Fri Mar 11, 2011 8:25 am

Mary Beth,

Glad I'm not the only one indulging in too many fruits and veggies:). I'm trading off looser stools for more calories and what I consider an over-all healthier diet.

Not sure why you thought I stopped doing MRT? It was most likely the guar gum (which is not on the test) that threw me into the flare. It was my worst flare since going gluten free in July and was sooo disappointing, since I had been doing so incredibly well after dropping my MRT reactive foods. I wonder if the build-up to, and then the flare itself, had to do with my system becoming increasingly "purified" by avoiding my intolerances?

My experience goes to show that it is absolutely ESSENTIAL for us MC'ers to pay close attention to ingredients in anything that's not in its raw form. With the minimally approved gluten threshold for "gluten-free" labeling, now even reading labels seems to be in question

.

There is no doubt in my mind that MRT/LEAP is a very useful tool for us. I was shocked to see my daily staples like coffee, bananas, honey, corn, turkey, etc. on the reactive list, but when dropping them, I saw an instant improvement, which proved to me that the test is highly reliable.

Love,
Kari

P.S. I'll always be grateful to you for bringing this test to my attention, as well as being here for expert advise

.

Polly · Post by **Polly** » Fri Mar 11, 2011 9:13 am

Interesting, Mary Beth.

I guess it's individual differences (think genes primarily and also environmental overexposures to foods, antibiotic history, etc.) that determine one's own list of sensitivities. Who knows? Perhaps avoiding one's sensitivities (even without any symptoms) would prevent certain diseases from ever happening. I think it is so wise that you are doing this with your son. Cutting edge stuff.

A thought: no wonder nutritional research is so fraught with contradictions. If everyone has a very specific set of food sensitivities (even when healthy), then the results of any research do not account for this at the present time.

Kari,

Yep, you are so right about finding only pure foods. And I agree about the value of MRT. Mary Beth had told me that there were 2 approaches to the LEAP diet - either eliminating all reactive food at once and eating the rest, or eliminating them and going stepwise to add in one green food at a time. I decided to do the latter, and I'm so glad I did. I never would have learned that I react to avocado or maple sugar (both were acceptably green on MRT). It has been much more tedious but worth it, I think.

Love,

Polly

mbeezie · Post by **mbeezie** » Fri Mar 11, 2011 9:32 am

Polly,

I am not sure what causes food sensitivites, but I think overexposure, antibiotics, food additives, maybe even GMOs contribute. I see many, many peole with corn sensitivity and we know how much corn is overused in our food supply. Dr. Fine and Dr. Cordain both think avoidance of lectins helps prevent disease. I am trying with my son and hopefully he will benefit. I see so many children (and adults) that would benefit from LEAP but I think many parents gasp in horror at the thought of removing gluten and darity etc.

I sometimes use the approach of avoidance of reds and yellows vs the stepwise approach with athletes who are asymptomatic and simply want to reduce inflammation as much as possible. It's also sometimes the way to go with kids as the other approach may be too difficult. For someone who is really symptomatic though, the best result will only come with the approach you took. You get an A+ for being a model LEAPer

Love,

Mary Beth

Kari · Post by **Kari** » Mon Mar 14, 2011 5:13 pm

Polly,

I'm very curious to know how you started your MRT program. Can't imagine that you started with ONE item? I believe I also did the step approach, as I got started with 25 items (including flavor enhancers). I only reacted strongly enough that I knew it was a problem to 2 of them - quinoa and coconut milk (probably guar gum).

Since my system has never been totally stable, I have lots of trouble figuring out my sensitivities. Looking at my original list of items, I realize that there was way to much fiber, and I have been scaling back on it quite a bit, while incorporating other, gentler items. For me this is a work in progress, and I probably have a long way to go, but I'm getting there little by little.

If my dietitian had more experience with MC, the list of start items would probably have been quite different.

Love,
Kari

P.S. In case anyone is curious, here is the list of the "original 25":

Garbanzo beans
Tuna
Tilapia
Beef
Pinto beans
Quinoa
Buckwheat
Yellow Squash
Beet
Cucumber
Cauliflower
Cabbage
Apple
Olive
Blueberry
Grapefruit
Raspberry
Cashew
Peanut
Walnut
Hazelnut
Basil
Cayenne Pepper
Coconut
Ginger

Polly · Post by **Polly** » Mon Mar 14, 2011 6:01 pm

Hi Kari,

That's a good question. When I got my LEAP diet recommendations, Mary Beth was kind enough to review them for me and make suggestions for modifications. LEAP allowed me 22 phase I foods; However, among them were quinoa, rye, cottage cheese, and American cheese. Mary Beth wisely recommended against eating any of these. She also mades suggestions for an additional 10 foods I might safely add in phase I. In all phases, she has advised me to eat absolutely no dairy, grains (except rice), or soy/other legumes. So, I have had no beans or peanuts, for example, although I tested green for string beans, peas, lima beans and peanuts. After picking her brain, I have also decided that I will not test any of my reactive foods (yellow/red) for at least 6 mo.

What would we do without Mary Beth, our resident expert? Her knowledge of MC/lectins/fiber, etc. has really facilitated my gut healing, I believe. Of the 28 green foods she recommended for phase I, I only reacted to 2. That's a great batting average!

Thanks, MB!

Love,

Polly