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December 19, 2006

Living Gluten-Free

On 12/16/06 11:44 AM, Claude wrote:

> Dawn told me that you have been on a gluten free diet and that it's
> prevented migraines. I have a chronic problem with migraines and would like
> to ask you about this. Would it be okay to call you over the weekend? If so,
> what # should I call?

Hi Claude,

I suffered from migraines (about four a year or so) from the age of 17 to the age of 32. At age 33 and 34, I started having ten or more debilitating migraines per year. I was bed-ridden and in a really bad way, by the end of 2004. Clearly, they were getting worse and my work was suffering.

I also have OCD and it was getting worse, which is odd, as it usually improves with age. Additionally, I had gained a LOT of weight in 2004. No change in diet or exercise, just a big weight gain in a very short period of time.

What led me to the gluten-free way of life was the fact that, coming off a very bad week-long migraine in early November 2004, my joints were in excruciating pain. I was trying to transcribe the interviews for my third book, and my hands were cramping up, wrists were terribly inflamed, and I was just in a lot of pain. I posted to a private message board online (membership of actors whom I advise on their careers), asking if anyone had any advice for how I could get my joints to stop aching long enough to finish the book.

An actor friend of mine started asking me questions: "Bon, you just came off a migraine didn't you?" "Yes." "And you've put on weight." "Yes." "Have you been checked for celiac disease? Or at least a gluten intolerance?" "What?!?" I had never heard of any of that, so it seemed very odd. But I was in a lot of pain, so I began to do some research.

Sure enough, wheat gluten has been linked to everything from OCD to migraines to drastic change in weight to autism. It's actually VERY common to have a gluten intolerance, but in the American diet, it's not something that the FDA would ever want explored or widely tested. See, we live on GRAINS and to tell 15% of the population to stop eating wheat gluten would cause a major blow to the industry. But in other countries, they actually TEST for celiac disease in childhood, and the availability of gluten-free foods is VASTLY superior to what we have access to here.

Okay, so in December of 2004, I decided I had nothing to lose, so I went off wheat gluten (the non-medical way to "test" for a gluten intolerance is to take yourself OFF wheat gluten for two weeks and then have a very high-gluten meal to see if you have a severe reaction). For two weeks, I was incredibly healthy. Lots of energy, no joint pain, no migraines, nada. When I had gluten two weeks later, I not only got sick to my stomach (loads of abdominal distress), but I broke out in a rash around my lips and got very swimmy-headed. I decided that cutting out wheat gluten would be an easy thing to do, especially if it would solve my joint pain, migraines, and maybe even correct the sudden weight gain I'd experienced in 2004.

So, now that I've been off gluten for nearly two years, I can tell you the following:

I have not had a single migraine in two years (after having had a dozen in each of the years 2003 and 2004), my fingernails and hair have grown long and strong (healthier than ever), my skin looks great, my joints are fine, and my weight is beginning to stabilize (takes a lot of time, though, when you put on that much in such a short time). Point is, I am healthier now than I have ever been, and I credit that ALL to having cut out wheat gluten.

Here's the theory behind it:

The human digestive system has been around for three million years. Wheat gluten was introduced to the human diet about ten thousand years ago. We are not all so easily adaptive as to have the means to break down "new" foods (some human digestive systems do better than others). It's the same way that processed foods don't work for some people or that alcohol doesn't work within certain cultures who had alcohol introduced late into their evolution.

Since I now know my body does not process the protein of wheat gluten efficiently (and it may have done so, for the first 30 years of my life, but then reached a tolerance level of something it couldn't break down well and then shut off, causing the symptoms described above), I have to look at gluten as a poison to my system.

Yes, I *can* have gluten, but it's a choice that could make me very sick. Especially now that gluten has been out of my system for so long, even a little bit of it can really send me into a day of severe illness (like an allergic reaction).

It took a few months for me to really get the hang of it. Gluten is in EVERYTHING, it seems (since wheat is a common thickener in most processed foods), but if you start out going "all natural," that helps a great deal, as foods that aren't processed pretty much CAN'T have gluten in them. Eventually, I got brave about going to restaurants and asking for what I needed. Amazingly, most restaurants are educating their staff about gluten allergies and everyone has been very good about making sure I don't get sick. Some restaurants even pride themselves on their gluten-free menus!

I have a TON of websites to send you to. One of them has a printable allergy card that you can take with you to restaurants, so that they'll know exactly what you can and cannot have. Some celiacs are very sensitive to cross contamination (like, if your wife were to make a sandwich on the counter and leave crumbs and you were to later cut up an apple on that area of the counter, you could get "glutened") and some are not (like, if you order a salad with dressing that happened to be thickened with gluten, you can tell within the first bite or two that you're not going to be able to eat it, but you won't get violently ill or anything, so it doesn't have to keep you from enjoying the rest of your meal out--you just don't finish the salad).

I'm a member of a few discussion groups online that have been very helpful. They have regular gatherings of gluten-free folks both online and in person, to share ideas for good places to eat, ways to make your own kitchen "safe," and doctor referrals, etc. I think we're very lucky to be in a community where food allergies are understood and there are many options for us to still live normally. Middle America is still just learning about this stuff.

I mentioned restaurants with gluten-free menus. Well, PF Chang's is one of the best. Its gluten-free menu has MANY items on it! It's great! I also love going to Planet RAW because there is not a single thing on their menu that I could EVER eat that would cause me to get glutened.

There were some labeling laws passed in late 2005 so now everything that has wheat gluten in it must say so on the label. That's very helpful! (Because before that, "modified food starch" could be listed as an ingredient, and unless you knew for sure that it was corn starch vs. processed wheat gluten, you couldn't safely eat it. Now they *have to* spell it out.)

Whole Foods is a good store. They have pamphlets at the entrance with guides to gluten free items. Even better is Wild Oats, as they put big stickers right on the shelves next to the price of each item that say GLUTEN FREE. Very easy. Trader Joes also takes good care of its gluten-free customers.

Okay, that's enough to get you started. Now I'll share a whole bunch of web links with you, for your year-end reading. Please let me know if you have any questions. I was very nervous but excited two years ago this month, as I hoped we had found the cure to my most debilitating chronic illness. And, I'm here to tell you two years later that we DID. And it continues to be very exciting. I love being migraine free!!

Good luck!

Great articles:

Eating guides/food lists/lots of links within each page:
http://forums.delphiforums.com/n/mb/list.asp?webtag=celiac&ctx=1048576&cacheTag=x34-39 (also support forums)

Support forums:

Local information:

My favorite magazine:

Have fun!
Showfax.com Column! http://more.showfax.com/columns/avoice

"Any time I see someone succeed I am happy, for it affirms my belief that I live in a world where success is possible." -- 20 August 2004

Posted by bonnie at December 19, 2006 2:29 PM

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