Thursday, July 23, 2009

"Toxic Food Syndrome"... my quest towards better health.


What is "Toxic Food Syndrome"? Well, it's something I'm researching to see if it helps my chronic health condition. Some of you may know I have been diagnosed with Crohn's Disease since about the year 2000. If you don't know what it is, CrohnsOnline.com has a brief description of it. It is a digestive tract disorder that has been affecting me in my small intestines. For those of you who didn't know I am dealing with this, now you know. I am sharing this on my blog for others who suffer with this to possibly help them with the directions they may be forced to choose between.

This will not be a one time post on this topic. I will continue to update this "tag" under Crohn's Toxic Food Syndrome as I come across decisions, postive, or negative results and opinions I have about all of these things.

If you've read my blogs in the past or read through some of the archives, you will find that I post a lot about restaurants and their food. That will drastically change. The past couple months I have made a slight change toward my postings as I have not been able to enjoy restaurant experiences as I used to. I've posted a few wheat & dairy free issues I've dealt with and related things.

Let me attempt to briefly describe my experience. Prior to ~1999, multiple visits to various "Internal Medicine" Doctors over several years got me no where as far as my complaints of stomach pains. Finally, in 1999 I had such a major infection an emergency visit to a Urologist discovered it. Then I was off to emergency surgery. Biopsy results testing for Crohn's Disease at the time of the surgery came back NEGATIVE. I returned to my work after several months of recovery. A few months later severe pains returned and I was back to the hospital for another biopsy which showed positive results for Crohn's. I have been under the care of the same Gastroenterologist for 10 years now.

My main reason for posting this blog is to discuss my concerns about diet and how/if they affect the way I feel. Under the guidance of my Gastroenterologist, diet/food has no affect on my condition. I've followed this theory for 10 years in disbelief. Many other Doctors who specialize in nutrition or "alternative medicine" believe Crohn's is curable or manageable by diet. A recent flare up of my Crohn's in May has pushed me to seek additional guidance. I've started receiving nutritional & diet care from a Medical Doctor who also specializes in "alternative practices". This is when the interesting stuff begins...

www.RickNakama.com Crohn's Toxic Food Syndrome Toxic Food Syndrome...

My first visit to this Doctor who I'll refer to as the "Alt Dr." (Alternative) was very interesting. He explained that many patients with similar complaints have been "cured" or drastically helped by treatments that traditional western medicine and insurance companies consider to be alternative medicine. He drew some blood samples in the office that were sent to Immuno Laboratories in Florida. He gave me this book to read (which is a compilation of patient testimonies) and had me begin a no wheat or dairy diet right away. He explained that most people have reactions to wheat and dairy and don't even realize it because it's delayed and/or internal.

These are some things I purchased to follow the no wheat & dairy diet...

www.RickNakama.com Crohn's Immuno 1 BloodprintThe test is called the "Immuno 1 Bloodprint (TM)". It's a test that checks how my blood reacts to certain foods. It's not really covered by conventional medical insurance (HMSA). The cash cost of this test is $300 and the results take about 3-4 weeks. I met with Alt Dr. earlier this week to review the results.

My results were reviewed in depth by one of the staff at the Alt Dr.'s office then again with the Alt Dr. It came with this book that thoroughly describes how to follow the test results to begin what is called an "elimination diet". The test also gives me access to personal assistance from the website, www.BetterHealthUSA.com, a guide to the elimination diet. It also comes with a pocket card of my reactive foods.

I thought the no wheat and dairy was impossible to find prepared food to eat while out and about. I was following the no wheat and no dairy diet for about 4-5 weeks already. I've posted some frustrations about it during those weeks. Not too many, mainly because I was just TOO FRUSTRATED! Now I've decided to actively post my experiences because I realize how frustrating this can be for us newbies on these types of diets.

I continued to have uncomfortable feelings in my abdomen. I was beginning to think this could be a waste of time, but when I received these results, it was a sign... if I had to eat out, I was eating pho (rice noodles & mung beans) or sushi w/out shoyu (rice).

www.RickNakama.com Crohn's Immuno 1 Bloodprint resultsThis image is the results of my food reaction test. Yes, wheat and cow's milk is on the list. I have not had those things for weeks now.

The items on the top of the page (in red) are the things I should not be eating. There is a number beside it (1-4). That is the level of reaction my blood had to the food item. I was astonished to see that I had a rather high reaction of 3 to RICE!! It's devastating! I am Japanese and now I am to live my life without RICE!! How will I do this? Especially because I cannot eat bread products (wheat, eggs, dairy & yeast) and I also have reactions to soybean. The elimination of soybean is also major to me. It eliminates Soy milk, tofu, soybeans (of course), natto, shoyu (soy sauce, I actually purchased a wheat free soy sauce last month), miso dishes, soy based desserts, many snacks, soybean oils and the list goes on to also include various lotions if we discuss non-edibles. Another item I want to highlight is Sesame at a level 3! I have sesame oil, sesame seeds and I even once had a sesame plant growing in my vegetable garden! Tomatoes is rated a 2 and I enjoy tomatoes and actually have a pack of roma tomatoes from Sam's Club in my refrigerator (purchased day before results) and a tomato plant growing on my lanai!! At this point I'm rather happy I never planted a new chili pepper plant. Sadly I am reactive to chili pepper and I love my chili spices! Luckily I am non-reactive to black and white pepper... thank goodness!! The baker's and brewer's yeast is also creating an issue for me. When reviewing what to avoid to avoid those yeasts, in my "normal" diet it eliminates vinegar (unless it's distilled), authentic rootbeer (my favorite soda!), pickles (American & Japanese... both favorites of mine!) & oil & vinegar salad dressing (my 1st choice... always!). I don't mind the other stuff yeast eliminates like beer, wine and some other alcohols because I gave up all alcohol years ago. Which is a good time to mention I used to drink a glass of red wine a day in 1998 (pre-surgery). Of course I will cover my reaction to wheat, a reaction of 1. I love to bake. I tried baking without it using substitutes like RICE flour which I happen to have triple the reaction to! The results just were not satisfying to me. I actually worked a temporary baker's assistant position in a Japanese bakery in the middle of the night for a few months just for me to learn how to bake breads!!! This is how much I wanted to bake artisan breads and not to mention eat the breads. Of course I could still be baking the breads, but not being able to eat them would be torcher! My favorite place to eat on a weekly basis, at least, is Cafe Laufer. I haven't been there in months! All I would be able to do there is drink my most favorite purchased iced coffee! My highest reactions are to almond and and oat, level 4. I love oatmeal and enjoy almonds... there isn't much more I can say about this. =( =( =(

^^^Sorry for that super long paragraph. I didn't want to bother splitting up my disappointments... so read it as 1 paragraph of disappointments with 1 positive about pepper... hehehe.^^^

Anyway, on with it. I have began my elimination diet which eliminates everything on the top (in red). It's been 3 days and honestly, I actually feel better. Is it psychological? Is it because my Crohn's is not active now? Is it because of the elimination diet? At this point I obviously don't know. I would like to think it's because of the diet so I don't feel like I'm wasting my time and energy, but I have no proof yet. Again, this is why I've decided to make this a regular blogging topic. To document my trials and tribulations with my supposedly incurable Crohn's.

If you read the red list, you will understand why it is virtually impossible for me to buy a prepared meal. As far as I know, there are no restaurants in Honolulu that I can walk into and order off the menu (except maybe Wendy's... I can order a plain baked potato... whoo hooo!, but technically there isn't a Wendy's in Honolulu and the closest would be Aiea! :P Oh wait I forgot about Salt Lake, OK I can drive there for my $1 plain baked potato).

On the light side of things, I'm told I will be able to re-introduce items from my reactive list 1 item at a time over the months to come and see if I have reactions. I have hope that I can re-introduce BREAD into my diet perhaps with egg substitute if need be, but at least maybe I can have a piece of bread sometime this year! Or a cake or cookie for that matter.

Gluten Free Corn ChexDoes anyone want to try to follow this diet for 1 day? Tell me where you find something I can eat from a restaurant. Please I don't want to buy salads without toppings or dressings. I know I can eat that, but that's not a trully prepared meal. I want to be able to go out for the day without carrying around a Ziplock bowl of "Now Gluten Free Corn Chex Cereal" for me to eat so I don't starve. Post a comment of what you find out there. If you are too shy to post a comment, email your suggestions or questions directly to me.

Thanks for reading about my frustrations!

RickNakama@Gmail.com


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2 comments:

  1. RM, That's sooo sad you are allergic to everything under the sun. I can't even imagine not being able to eat whatever I want! I hope you can have bread again - esp so you can bake and give me some! hahaha!

    ReplyDelete
  2. dealing with a similar issue! just got my results back:
    bean,green (+1)
    bean, kidney (+1)
    bean, pinto (+2)
    bean, yellow wax (+1)
    celery (+1)
    cheese (+1)
    corn (+1)
    cranberry (+1)
    egg (+2)
    milk, cow (+2)
    milk, goats (+1)
    pineapple (+1)
    rice(+1)
    safflower (+1)
    tomato (+1)
    turkey (+1)
    wheat (+1)
    yeast, baker's (+2)
    yeast, brewer's (+2)

    are you avoiding foods with a +1 rating? between yeast, wheat, corn, and rice there are very few alternatives for me. I just got this news and I am very overwhelmed.

    ReplyDelete

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