Friday, July 03, 2009

How is a dietary approach to arthritis working?

I said I would report on my experience with trying to use a dietary approach to confronting my arthritis.

I received the electronic version of my ALCAT results, as I recall, on May 30th. I talked with Barbara Allan about what they meant and what, specifically, I should do as a result on the afternoon of June 3rd and the morning of the 4th.

Of course, I had already read her book. So I was quite familiar with the idea that a lot of foods hide substances like corn and wheat.

But still she "blew me away" when she said she wanted to go through my list to help me beware of special places some of my problem foods might be hiding.

For example, I didn't think I'd have any problems with avoiding beef liver. I don't enjoy eating it, so why should I worry?

Barbara said, "You need to be aware that, if you take B vitamins, they are often made from beef liver."

Oh! --I've been taking a lot of B vitamins!

A few minutes later, concerning brewer's yeast: "It's very similar to beef liver: often used in the manufacture of B vitamins."

Again, "Oh!"

And pork. I know what pork is! I know how to avoid it.


Except: "You will often find pork hidden in gelatin. Gelatin can be made from cow bones and from pig bones."

"Oh, no! " I said. Sarita and I had just eaten out the night before at Sweet Tomatoes. I have been careful about what I was eating, and, despite loading up with vegetables, was still hungry. I happened to see the fruit gelatin ("Jell-O"--except, I'm sure, not Jell-O® brand gelatin) sitting over there. "I haven't had Jell-O in so long!" Of course, it is not the highest quality food. But I thought it might help fill me up.

Whatever brand it was, it must have been made from pork bones, because I was in some serious pain on Thursday morning as we spoke. The day before, I had been almost pain-free. But as I spoke with Barbara on the phone, my hands and feet were "killing" me.

"No wonder I have been in such great pain today!"

Toward the end of our conversation, Barbara suggested, "Maybe you should start your new diet after you get back. I don't see how you're going to be able to make the diet work while you're on a cruise!"

"Well, I'm sure I won't be able to do it perfectly, but I'd like to get started and do as well as I can. If nothing else, it will be a good educational experience. It takes a new mentality to figure out what you can eat after you receive a list like this."

Barbara agreed with my perspective that it takes a while to shift from thinking, "Oh, no! I can't eat that!" to, "What can I eat?" Focus on the positive rather than the negative. (It's so easy to focus on what we can't eat; it takes real discipline to focus on what we can eat.)

It took me a few days to realize I should ask the cruise line if they could help me while I was onboard. The list was so daunting to me, it then took another few hours to wangle the courage even to call. I was afraid they would say, either, "Look, if your needs are that great, perhaps you ought not to come on the cruise." Or else they would completely ignore my concerns. But/and/so I decided to call the cruise line's headquarters. I asked the young woman who answered if she thought they could help me.

"Oh, we deal with special requests all the time," she assured me. [Not as complex as mine! I thought.] "Please send us a letter with all the details," she said.


It was as a result of thinking through how to best inform the cruise line of my needs that I created the second list of dietary restrictions I mentioned yesterday. They would need a list that included some of those special "hiding places" where corn and wheat, especially, seem to hide.

So I wrote them a letter:
Just a week ago, I was diagnosed with rheumatoid arthritis. It is painful and, at its worst, semi-debilitating. But it's non-life-threatening and, so far, I have suffered no permanent damage to any of my joints. BUT . . . I need to get it under control so that one day I won't start to see damage.

In order to get it under control, I am attempting to avoid certain foods that blood tests have shown I am sensitive to. I'm not allergic to them in the sense of life-threatening reactions. They "just" cause my joints to become inflamed and painful.

I say all this to indicate that if I mess up on my diet, Viking won't be liable for somebody going into a major medical crisis, but also to say that I would really like to do everything I can to live within the strictures of the diet. I am not pursuing this the way a lot of people "try" to lose weight by "cutting back on calories" . . . "Oh, well, let me eat that cake; I'll do better tomorrow."

I'm serious, but I'm not going to fall apart if we inadvertently mess up . . . or come to the conclusion we just can't be sure we've gotten rid of everything. --I am still on the front end of learning how to eliminate all these ingredients.
--I then followed that with my lists of "Foods I need to avoid at all times" and "Foods I can eat once every four days."

I didn't send the letter until just after 5 p.m. on Thursday, June 11. That would have been 1 a.m. on Friday, June 12, in Europe--where our boat was. And we were scheduled to arrive in Europe on Sunday afternoon, June 14th.

Worse, I sent the e-mail to the cruise lines headquarters in Florida rather than straight to the boat (since I had no idea how to contact the boat itself).

Despite my tardiness, when I got on the boat, the maître d' graciously contacted me and offered to do the best he could to help me follow the dietary restrictions. And he was good to his word.

The result: my inflammation slowly--but not linearly!--declined over the course of the two weeks. Because I am still learning what is on my list, I made several mistakes--and paid the price for them!--but, in general, I have definitely improved. I would say that, by the midpoint of the cruise, my feet no longer bothered me, and, in general, the inflammation and pain became focused primarily in my right thumb and pointer finger, though I could notice it a little bit in my left thumb.

As I wrote to Barbara just a couple of nights ago:
It's easy to "forget" what's on your no-no list!

I, of course, focused on the major no-no's. But, at one point, I thought: "Good grief! I haven't had any cabbage in 'forever.' And I love German sauerkraut. . . . I can't have any that has pork in it. But maybe they'd make me some without. . . ."

So I asked. (They didn't add any large chunks of pork; but I found that they had obviously cooked my portion in with the other portions, and there were plenty of little pieces of pork in it. . . . The maître d' had been so kind and had attempted so hard to be helpful. I thought I should be 'polite.' So I picked out whatever tiny pieces I could see, but decided to consume the rest anyway . . . even though I knew, as you had taught me, that there would be plenty of small/hidden/invisible samples of 'moderate intolerance' pork remaining in the liquid that surrounds sauerkraut. . . .)

The next day, while visiting a German biergärten, I had a similar experience and, to be polite, behaved in the same manner.

It was only much later that I realized, with all the focus on pork, I had ignored the fact that cabbage is one of my mild intolerance vegetables, so I shouldn't have eaten it a second time--even without pork--for four days.

And so on.

One more illustration: Salad dressing.

"Hey! None of the regular ones work. But I can have olive oil and balsamic vinaigrette!" . . . That's what I thought.

But, oh (I found out just yesterday during my interview with Katherine Holmes at Cell Science Systems): vinaigrette is made from grapes (good; grapes are an "acceptable"/non-hypersensitive food for me), but "all vinegars--all but three--are produced using yeast" [which I'm supposed to avoid as much as possible due to candida]. . . .

And, oh, yeah (I also found out from Katherine): I'm not supposed to eat any "green" ["acceptable"] food on my list even two days in a row: "Only every-other day, at most."
So I'm still learning. And still "paying the price" every now and then for inadvertent mistakes . . . and, frankly, sometimes vertent decisions to ignore the diet (though progressively fewer of those, as I "pay the price" for my transgressions!). But, as I said above, I am doing better. And I'm feeling as if I'm getting this disease under control. I can tell when I'm "on"; and I can tell when I'm "off." And I can distinguish these things not only or merely by what's on the menu, but, very much, by the reaction--either good or bad--a few hours to a day or two later. There really is a correlation.
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