A Diet and a Drug: The Blessings of Unexpected, Hard-Won Discovery

If you have an AN AUTO-IMMUNE DISEASE or love someone who does, PLEASE read this. It can change lives. It did mine.

In my last column in Christian Courier, the Canadian biweekly I regularly write and edit for, I wrote about the exilarating healing I began to experience in February after nearly 30 years of suffering with Crohn’s disease, an all too common auto-immune inflammatory bowel disease (IBD). I’ve tried many of the Crohn’s drug, mostly unsuccessfuly because I am extremely drug senstive. I’ve had two surgeries in which past of my small intestine was removed each time. Throughout all that I was told by most physicians that what I ate really didn’t matter much. That seemed counterintuitive — after all, as in many areas of life, “garbage in, garbage out” would be the logical response — and indeed, it is. More of that below.

As is often the case with gastrointestinal and immune system disorders, they affect bodily systems besides the obvious ones. They really affect the whole body, including the brain and the emotions; and thus, also the spirit.  I also have long had allergies and asthma, and, far more seriously, mitochondrial dysfunction:  in my case, the cells’ mitochondria  — the “engines” or powerhouses of every bodily cell –  do not produce enough oxygen, adding intensely to the fatigue already caused by Crohn’s, and in addition causing muscle aches, weakness and muscle “humming” because lactic acid builds up in the muscles even when they are not being used.

I’m not telling you these woes to elicit sympathy. I’m describing this so that you can see how ill I have been and what a marvelous tandem solution the diet and the drug about which I’ll tell you has been. And so that if you or someone you love suffers from similar afflictions (or also from serious neaurological diseases such as MS, ALS, neuropathy, post-polio syndrome) you — or they — will know that there is hope if you (or they) thought all avenues of help had been exhausted.

‘Wait on the LORD and he will renew your strength like the eagle’s’

Last fall, in the midst of a long bout of despressing and debilitating fatigue (not to mention constant ache/pain in my right side at the place where the Crohn’s is active in my gut) I initiated a renewed search via the Internet for a good alternative treatment to Crohn’s. I sensed that all my ailments were related, since my immune system seemed to be the underlying culprit. I prayed daily, as I had for many years, that God would at last bring healing. He certainly had in various ways  during those three decades. But I admit I was looking for something more. I wanted to be able to function like a normal — or relatively normal — human being, to have the energy to do my work (writing, editing, being a church music director, being a wife, tend-er of our pet cats, gardener and run-ner of a household).

God led me in a way that made me have to rely on him every step, that forced me to develop patience, that required me to learn to “wait on the LORD.” But then he, at last, granted me my heart’s desire:  health; in barely four month, better health than I’ve had in essentially my entire life since early adolescence.

In my Internet search I was first led to what was basically a gluten-free diet. It eliminated  wheat, oats, barley, corn and all other grains except rice and rice-based breads and pastries. It did not eliminate refined sugars, nor starches such as potatoes. Along with some new nutritional supplements I launched into that diet with great hope on New Years Day.  I began to feel some difference and began to lose a little weight. But three weeks in nothing much had really happened. The slight initial improvement may have been a placebo effect. The pain in my side — always an indicator of the state of my Crohn’s — was as bad after a month as it had been in some time. In another week I dejectedly concluded it wasn’t working.

The DIET

Meanwhile, I had started another Internet search and was continuing to pray that God, Creator of our marvelous bodies, Author of every biological  system and function within those bodies, would lead me to an answer that would be in tune with the way he created us. I believe he gave me that answer. Very quickly I started seeing references to the Specific Carbohydrate Diet (SCD). I came across people on the diet and accounts of the ongoing healing they experience because of it. At first I dismissed it because it seemed pretty drastic. And that from someone who had alrady eliminated wheat, oats and corn (oh, corn on the cob!) from her diet.

But the gluten-free diet, in itself, clearly was not working. I began to read more about the diet, discovering that it was devised some years ago by a Canadian moleculor biologist named Elaine Gottschall for her own daughter who had severe ulcerative colitis when only a young child. Gottschall has died but her theory is alive and well. Put simply, it says that people with IBDs (and the less serious iritable bowel syndrome [IBS]) cannot digest well most sugars and starches (two- and three- or multi-molecule sugars called di- and polysaccharides), and especially refined forms of these. When a person eats those things, the undigested food remains in the gut too long and is feasted  on my unbeneficial bacteria. It ferments; it exacerbates the disease.

The solution, therefore, is twofold: avoid such sugars and starches so that those “bad bacteria” have little or nothing to feed on; and introduce “good bacteria” (probiotics) such as the acidophilus in yogurt (or acidophilus by capsule) to help get a better balance of bacterial “flora” in the gut. How does one do that?

The good news first: by eating only meat, (most) vegetables and (unsweetened) fruit, and by making one’s own yogurt (incubated for a full 24 hours so that all the lactose (milk sugar) in its milk or 1/2 and 1/2 contains gets eaten up.  That leaves a huge variety of good food for one to eat (and there are inventive SCD cookbooks and other recipes to help one). But it does take an adjustment period for most people, not surprisingly, and of course the will to do it. But it’s so effective that the will to do it becomes second-nature for most people on the SCD. The alternative is continued pain and diarrhea, fatigue and other complications. Which would you rather have?

And now the bad news. What that means is the elmination of  foods you probably thought you couldn’t (or didn’t want to) live without:

Bread (and other grains, including rice and soy, which are essententially starch; you’ll get the nutrients they do contain from other sources); eliminate potatos and sweet potatoes (hard to digest starch).

Sugar: refined or partially refined sugar (white sugar, brown sugar, molasses) or sugar added in manufacturing (to practically everything canned or bottled: ketchup, salad dressings, steak sauce, soda pop, sweetened juices, hot dogs, sausages and bacon — all with added sugar or sugar-cured). Also eliminated are certain kinds of fermented foods, particularly soy sauce.

Many people with IBDs know themselves to have a lactose intolerance: they can’t drink milk, eat ice cream, use coffee cream, sour or whipped cream, soft cheeses (especially mozzarella), etc., without it causing gas, bloating or diarrhea. That’s because lactose is a milk sugar that not well digestible for many of us. The good news with the SCD is that not all milk products are verboten. If you love butter, as I do, use it! It’s virtually  lactose-free fat. And I already mentioned the mainstay of daily eating: home-made yogurt which is fermented a full 24 hours, removing essentially all its lactose while introducing good bacteria into the gut (as well as needed protein, calcium and fat).

Gottschall set down her ideas and developed the diet in her book Breaking the Vicious Cycle: Intestinal Health Through Diet. (The book also contains some initial recipes, which is a help.Complementary to this diet are several other books that I highly recommend: the first is Life Without Bread: How a Low-Carbohydrate Diet Can Save Your Life by Wolfgang Lutz and Christian B. Allen; the second is Good Calories, Bad Calories: Challenging the Conventional Wisdom on Diet, Weight Control and Disease by Gary Taubes.

As the subtile of Taubes’s book indicates, and as you surely know, a low-carbohydrate diet (which automatically boosts the amount of fats one eats) is not part of the conventional medical wisdom of our time, though it was for most of the 19th century. Taubes explains how the unfortunate state of affairs came about which has most physicians still swearing by the “health” of a high-carbohydrate/low-fat diet, despite the massive obesity epidemic which we’re in the middle of. And  he and Lutz and Allan explain the human biological processes and the research studies which demonstrate why they take exception to that conventional wisdom.

If one only wanted to lose weight (rather than help heal an IBD), the SCD would be the diet to do it. Since February I lost 30 pounds — down to my optimal weight — without trying to or thinking about it. You stop eating sugars, the weight falls off, and without being hungry if you’re eating enough meat, veggies and fruit (fruit has natural sugar in it, but of a kind different than refined sugar, and more easily digestible for most people).

The DRUG

About the same time that I discovered the SCD I discovered the off-label use of a generic drug which is also doing wonders for people with IBDs, for other imme system disorders, for serious neurological disorders such a MS, and for certain cancers.

The drug is referred to as low-dose naltrexone or LDN. That is to distinguish it from its regular high-dose use in treating drug and alchohol addiction.  In the 1980s a New York physician, Bernard Behari, discovered that low doses of naltrexone (up to only 4.5 mg) would regulate the immune system. This ocurred by taking it before bed. The drug would block the body’s opioid receptors for several hours, and as a reaction, when it wore off, the body would produce endorphins, which are now known to be crucial to how the immune system functions — and which every person with an auto-immune disease does not produce enough of.  (You can read much more about this, and about Elain Gottschall’s work with the SCD at the links below.)

LDN at that dose has no bad side effects — except it can at first, and for a while, cause wakefulness in some people. That happened to me. I would wake up and be awake for two or three hours during the night, at first, when my body started producing endorphins. Gradually that improved and now happens seldom. In the meantime, though, when one is asleep the sleep is very deep and restful (and many people remark that it is often accompanied by vivid dreams, though my dreams have always been vivid).  The first few nights I felt as if I were glued to the bed when I first noticed the effects of the LDN, my limbs feeling very heavy. Including the few hours awake, I was in bed for 12 hours a night for the first two nights. That “heaviness” sensation is rare, apparently, and was of no real consequence.

Within five days I felt a huge surge in energy level and that continued to improve. The lactic-acid problem in my muscles cleared up. I am now also using my asthma inhaler half as much as I did, and have fewer allergy problems. It is also helping — along with the diet — for my Crohn’s. (An initial Penn State study showed its efficacy for Crohn’s, and that study is currently being followed up on.) My gastroenterologist, though he had never heard of this off-label use of the drug, was open to allowing me to try it, and my personal physician was equally open to it and the diet (and asked for information he could pass on to another of his patients with Crohn’s). That is not always the reaction from doctors. Many don’t want to hear about it since it’s new to them or because it’s being used off-label (though many drugs are).

Both the SCD and LDN have been a God-send for me. Many thousands of other people worldwide have also experienced renwed health from the diet, the drug or both. I’m on internet discussion lists with groups of people on the diet and taking the drug. They all testify to the diet being amazing and the drug amazing in additional ways. If you haven’t heard of LDN it is probably because it’s a generic drug and the pharmaceutical companies have been reluctant to conduct studies on it that won’t profit them. Independent studies are being conducted, however,  and are revealing more and more the astonishing properties that this drug in low doses is invested with.

Links

Specific Carbohydrate Diet:    http://www.breakingtheviciouscycle.org/ http://www.healingcrow.com/dietsmain/scd/scd.html

Low-dose naltrexone (LDN): http://www.lowdosenaltrexone.org