Proving doctors wrong, one patient at a time

I’ll say this upfront: I have never been the dieting type. I’m pretty tiny, it’s pretty much genetic, and I pretty much top out at about 5 lbs. over my fightin’ weight of 104 lbs. B.G (Before Gold’s); I guess if I worked reeeeally hard at it now that I have some muscle on me, I might be able to make it to blood donor weight.

But I’d have to work really, reeeeeeeally hard at it, now that I’m on the first restricted food plan of my life: the Specific Carbohydrate Diet, or SCD. I’ve been following it with “fanatical adherence” for over two years now, ever since I was released from my 11-day incarceration in the IBD ward of Cedars-Sinai in Los Angeles.

That’s one of the crazy things about the SCD—as its major proponent, Elaine Gottschall, B.A., MSc., has emphasized repeatedly on the many Listservs and bulletin boards she still frequents for sufferers of Crohn’s disease, ulcerative colitis (UC) and autism, in order to work, the diet must (at least, initially) be followed with fanatical adherence. As in, no “just this one cupcake” or “just this one beer” or even “just this one sip of Coca-Cola”—you either follow the SCD 100% or she very kindly but firmly insists that you are not actually following the SCD.

Elaine Gottschall stumbled upon the precursor to the SCD when her young daughter was diagnosed with UC. After dragging her from specialist to specialist, she finally met Dr. Valentine Haas, who put Elaine’s little girl on a diet he’d found successful in alleviating a number of gastrointestinal disorders. Her progress was slow but steady; to this day, some 40 years later, she remains in remission (and on a modified version of the SCD). Elaine was so impressed by this remarkable recovery that she went back to school to further research the diet. She subsequently wrote a book about the SCD, outlining the science behind it and including an extensive list of allowed and disallowed foods, as well as a batch of recipes that she had come up with over the years.

Very simply, the premise behind the SCD is this (from Seth Barrows’s site):

The premise of the diet is that damaged intestinal walls and bacterial overgrowth are a part of a vicious cycle that wreaks havoc with the body’s health and immunity. The diet restricts the types of carbohydrates that feed these pathogens, thereby restoring the body’s inner ecology. The SCD diet is very similar to a Paleolithic diet, except it allows the consumption of certain legumes, fermented dairy products, and dry alcohol.

The SCD also resembles the Atkins diet in certain respects (although as SCDers are always quick to point out, unlike Atkins, you can be on the SCD and eat a lot of carbs. You just can’t eat any of the good ones). The diet basically excludes all disaccharides and polysaccharides, which pretty much in turn excludes all processed foods, since they rely heavily on sugars and starches.

So for 2+ years, I’ve had no ice cream, sherbet, sorbet, cake, cookies, cupcakes, candy, pasta, pizza, rice, tofu, potatoes, pancakes, waffles, syrup, bread, bagels, crackers, chips, gum, soft drinks, Russian/French/Thousand/Ranch dressing, ketchup, coffee, beer or chocolate. And that’s a partial list.

But for most of the past 2+ years, I’ve been healthy. I’ve put back the weight I lost in my initial Crohn’s onset and actually gained enough energy to start a weight-training program. I’ve been tapering off my meds successfully and plan to be off them completely by early 2005.

My doctors still think diet has had nothing to do with my recovery. This is a fairly standard reaction, I’m told, which is sad. Out of all the doctors I’ve met since I was diagnosed, only one was even aware of the diet, and as he said, “It’s really hard to follow and we can’t explain the science so we don’t really recommend it to most of our patients.”

So if you know of someone with Crohn’s, UC, IBS, candiasis, celiac disease, cystic fibrosis—or even a parent of an autistic child (there’s an incredibly brave and intrepid parents’ SCD group which Elaine has lent a great deal of support to), please send them here. Or here. Or here.

The SCD can’t cure everyone, but it can’t cure anyone who doesn’t know about it.

xxx
c

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18 Comments, Comment or Ping

  1. Beth

    I’m a person with Crohns, I’m doing the Remicaide thing, and I can eat pretty much whatever I want. I haven’t had any flareups or problems since before they put me on Remicaide (about 3 years), and the docs are starting to wean me off the meds. So I guess this is a shameless plug for Remicaide. But hey, it works, and it’s way better than being on Prednisone!!

  2. Hey, Beth.

    Sorry to hear about the Crohn’s. I’m glad the Remicade is working for you. I know a lot of people for whom it’s worked, and that’s a blessing. I don’t want to give the impression that I’m anti-medicine; nothing could be further from the truth.

    However, I’d urge you to educate yourself about the SCD, even if it’s just reading the online material. As good as any med is, I think it’s always better if you can control your health through diet and lifestyle (look, Ma–no side effects!)

    Plus, I know that subsequent turns on Remicade are often less successful, and we want to keep you well! It’s a great diet–if you’re used to eating “anything,” it’s almost guaranteed that your overall health will improve on SCD.

  3. Wow… I’m so glad to finally hear someone else is in remission of Crohn’s Disease. I suffered for 5 years originally diagnosed with Irritable Bowell Syndrome. During the last year of the disease I went down to 97lbs. This is not IBS I kept screaming at the doctors. Needless to say I had two major surgeries in 1997. For two months I was out of commission.

    Since then, well I’m going on almost 9 years remission :)

    It is funny how we have epiphanies when we are the living dead. I have hope that this disease dies instead of the person.

    Just a note: when I was in the hospital… there were 12 others in my ward haveing the same surgery to remove part of their illeum. We were all on TPN. It saved my life so that I could live through the second surgery at all but 97lbs.

    I’m 32 and it’s great to be alive in 2006.

    Not sure if you have looked into taking acidopholus? It is a pro-biotic that works very well for Crohn’s and Candida sufferers.

    by the way… your bio and pic are beautiful :)

  4. Force of carbohydrates - as carbohydrates will provide me with the greatest quantity of energy before sports employment? WBR LeoP

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