A friend (thank you!) recommended the book Pain Free in 6 Weeks (in print from Prestige Publishing) (see my review) by Dr. Sherry A. Rogers, MD, a prominent environmental medicine specialist. Dr. Rogers describes her own experience with pain from ruptured and crushed disks, and repeated accidents in horseback riding and boating. Yet the subsequent chronic pain responded--completely--to diet, chemical avoidance, and resolving vitamin and mineral deficiencies.
I resolved to follow her instructions for those in chronic pain: Try the nightshade-free diet first. Then, the diagnostic rare food diet. Then, the macrobiotic diet; if none of this has worked, then a raw food diet.
"Because unsuspected food allergy is such a common cause of chronic inflammation and pain," she writes, "you owe it to yourself to rule out a cause over which you have 100% control."
I was familiar with food allergy / sensitivity / intolerance from my doctor, an MD and environmental medicine specialist, who was treating me for candida yeast. Food intolerance is very well explained in the book Alternative Approach to Allergies, An: The New Field of Clinical Ecology Unravels the Environmental Causes of by Dr. Theron Randolph, MD.
By 1996 I noticed I was having serious reactions to foods. I fell asleep on the couch after eating a hamburger and fries; on the porch after eating a spinach salad from the supermarket deli; in the car after eating a candy bar; in a coffee house after eating a sandwich. I did find that when I avoided french fries entirely, I stopped randomly falling asleep at the wheel. In fact, by avoiding a food for six months to two years, I could regain some tolerance for it.
But, the way my doctor and I addressed food intolerance, during those years (1996-2003), didn't work: skin testing, immunotherapy, sugar/yeast avoidance. The skin testing made me ill, and I tested allergic to some 40 foods. The immunotherapy didn't work and probably made the situation worse. While this process may help the average person to continue a "normal" life, it wasn't helping me.
I avoided sugar for about five years, until I gave up in 1999. I had sugar cravings every day, junkie-like, both during the avoidance years and after. By 2003, although I went to restaurants and ate snacks from the supermarket, I ate a lot less sugar than anyone else I knew, went for days at a time without it, read labels, and ate most of my food organic.
But I had never grasped the concept of whole foods. In fact, I didn't even notice that the previously mentioned foods that had affected me to the point of unconsciousness were all commercially prepared.
A whole food has no ingredients. It has a single ingredient, itself. No one has added other ingredients, and no one has sprinkled anything onto it. A whole food has not been processed, refined, or otherwise had anything done to it. A whole food does not come in a box, can, bag, or restaurant.
Shockingly, even a piece of raw meat from the supermarket can contain added ingredients. According to a November 6, 2007 article in The Washington Post, 30% of raw chicken is injected with solutions that include broth (commercial broth contains MSG) and carrageenan, an MSG-containing additive made from seaweed. (Carrageenan is also used in animal experiments to cause inflammation and promote tumors.)
To detect a food allergy / intolerance, you have to know when you are eating a specific food and when you are not. The only way to control what foods you eat, and defend against secret ingredients, is to buy only organic whole food from a trusted source and prepare it yourself.
The second concept that I needed is that of food families.
Biologists, as you may be aware, have classified living organisms into a taxonomy that shows the relationships, close or distant, between the species. The family is a taxonomic rank that collects together related species.
Foods that are members of the same family tend to act similarly in the body. From a food intolerance standpoint, the foods within a family are likely to cross-react.
There is an excellent table of food families in Alternative Approach to Allergies, An: The New Field of Clinical Ecology Unravels the Environmental Causes of .
Dr. Rogers's first instruction was to eliminate the nightshade family of vegetables, the Solanaceae, for a three-month trial.
Foods of the nightshade family are: potato, tomato, eggplant, tomatillo, bell pepper, chili pepper, and the spices: paprika, cayenne, chili, and ingredients of curry. Additionally, tobacco is a nightshade: inhaling tobacco smoke is the equivalent of ingesting it.
Nightshade plants contain drug-like chemicals, manufactured within the plant, called glycoalkaloids; examples are nicotine (tobacco), capsaicin (peppers), and solanine (potatoes). Drugs (such as belladonna, atropine, and scopolamine) and some pesticides are derived from nightshade glycoalkaloids. Glycoalkaloids are cholinesterase inhibitors, just as organophosphate pesticides are. They affect the central nervous system and cause, among other adverse effects, pain.
As described in An Apparent Relation of Nightshades (Solanaceae) to Arthritis, Dr. Norman Childers, PhD, connected the nightshade family to arthritic pain and deformity by reviewing the veterinary literature that described the illness, crippling, and death of livestock that had grazed on nightshade plants. Also, he noted, nerve pain and other central nervous system problems can be attributed to nightshades.
The two most frequently consumed vegetables in this country are potatoes and tomatoes. And, currently, 22% of the population smokes tobacco.
According to Dr. Rogers and Dr. Childers, most people with chronic pain get major or complete relief from nightshade avoidance.
What I did not realize--as I already generally avoided potatoes and tomatoes--is how common chili pepper and paprika are in processed foods: from cola drinks (hence "Dr. Pepper," as well as the more famous brands) to snacks to breadings to meat flavorings. Although I was reading labels, I had not paid attention to "Spices," "Flavors," or "Natural Flavorings." Those vague names do, in fact, tend to indicate the use of chili pepper and paprika (as well as MSG, carrageenan, and gluten-based food additives). Unspecified starch and protein derived from potatoes are also very common.
This meant that I couldn't eat anything processed unless I was very sure, from the label, that it could not contain nightshades. (At this stage, I still ate some processed food; this probably caused me to accidentally eat some nightshades.) On October 30, 2003, I started the three-month trial.
The first weekend, I had obvious withdrawal: I ate all of my remaining stores of sugar intended for baking. In a few days, my right index finger had improved enough for very limited writing and typing. In three weeks, I felt that my ongoing pain had lessened by 25%.
For much of 2003, I kept a diary of what I ate, what I did, and how I felt. The diary had never been any use to me to identify food intolerance, except for tracking the week-long consequences of eating at a Chinese restaurant and an Indian restaurant. Now, however, I knew what to look for. In an episode earlier in the year, recorded in my food diary, I buy a jar of green chile salsa and eat some every day until it is gone. I complain each day about more and more pain until I stop recording symptoms; a few more days of salsa later, I write simply, "Hit by a truck," and the diary breaks off for six weeks.
Since the thoracic outlet syndrome problem began (since 2000), I had gone to the chiropractor or acupuncturist once a week. After every visit, I would stop at a well-known southwest-style hamburger chain and eat a hamburger with jalapeños and pico de gallo.
In November 2003, I hoped that nightshade avoidance would entirely resolve my pain. Instead, it simply made a significant dent. I was encouraged enough to move on to the diagnostic elimination diet: the rare food diet.
You usually don't know if you are intolerant to a food, because if you eat it frequently, your body will adapt. Although this may sound counterintuitive, your body adapts in an addictive way. This is actually "tolerance," the same as in drug addiction. In fact, a food you are intolerant to may be one you crave; because, essentially, after the effects of the food wear off, you go into withdrawal.
It involves the same process as, for example, tobacco addiction. Your first cigarette makes you sick, but you persevere; your body partially adapts to it. Then you cycle through highs and cravings (withdrawal). The combination of increased tolerance and periodic withdrawal creates the chain smoker.
There is an additional wrinkle in food intolerance. You may not even be aware that you are eating the food that you are intolerant to; it may be a hidden ingredient, as mentioned earlier.
All this is described in Alternative Approach to Allergies, An: The New Field of Clinical Ecology Unravels the Environmental Causes of .
The only way to uncover sensitivities to commonly eaten foods is an elimination diet. You can, for example, fast for a few days and then try one food, in its form as a whole food, at a time. In another method, some diets meant to be diagnostic prescribe which foods you can eat, typically foods that a minority of people are sensitive to.
But the rare food diet recommended by Dr. Rogers is the most adaptable and suitable for using on your own. She describes it succinctly in Pain Free in 6 Weeks and with more elaboration in The E.I. Syndrome: An Rx for Environmental Illness (in print from Prestige Publishing.) In essence, you design your own diet, following a few simple rules.
Do not eat any food that you eat more often than once every two weeks. Do not eat any food that you know bothers you. Eat only whole foods prepared at home.
After several weeks, when you are eating the foods that cause the least symptoms, then "test" foods individually, each at least several days apart. You will see the effect of each food.
Some effects could be violent. The biggest caution for the diet is that you may "unmask" a violent, even life-threatening, reaction, such as anaphylactic shock. One friend abruptly abandoned the diet (in her case, a prescribed elimination diet), went to a fast food restaurant, and had her first anaphylactic shock experience. Test foods one at a time and in small quantities.
During the three-month trial of the nightshade-free diet, I prepared for the rare food diet. I had to find foods that I didn't normally eat; yet I would have to like them, and probably have to learn how to prepare them. They would have to be suitable long-term, be sufficiently filling, and provide some variety. I would also have to pay attention to their food families.
This certainly took the entire three months; I recommend that as minimum planning time.
I made a list of foods from the food family table in Alternative Approach to Allergies, An: The New Field of Clinical Ecology Unravels the Environmental Causes of . I crossed off everything I usually ate, everything I disliked, and everything I had trouble with or was suspicious of.
Then I set about trying the foods that were left. Some I could just buy at the natural foods store and try; some I learned from books how to buy and prepare. A friend, who is a considerably more experienced cook and who is associated with the Weston A. Price Foundation, patiently taught me how to cook turkey, sweet potatoes, turnips, and other foods, and kindly advised me in general.
I read Dr. Sherry Rogers's book You Are What You Ate (in print from Prestige Publishing). While it is largely about macrobiotics, it is inspiring about health improvements made by diet, especially in environmental illness, and it fully impressed on me the concept of whole foods. I also read the sequel, The Cure is in the Kitchen: A Guide to Healthy Eating (in print from Prestige Publishing).
By January 2004, at the end of the three months, I had thirteen rare-to-me foods.
These were: turkey, sweet potato, quinoa, safflower oil, avocado, celery, broccoli, blueberries, pear, dried persimmons, pumpkin seeds, starfruit, and zucchini. As it turned out, some of these foods didn't work out, notably pears, persimmons, and starfruit, all of which burnt the inside of my mouth on repeated consumption.
The bulk of the initial diet, which I thought of as the Ancient Inca Diet (technically a sort of Incan / Mexican fusion diet), was turkey, sweet potato, quinoa, avocados, and safflower oil. With the exception of two prescription hormones for adrenal function, I also stopped all supplements, in order to test supplements one at a time.
My goal for the rare food diet, which I was to achieve, was to go an entire three months without: gluten, the entire Grass family (wheat, rice, corn, other grains), legumes (except for carob), soy, chocolate, sugar, dairy, nightshades, citrus, MSG, food additives, or restaurants.
My first attempt at the rare food diet began January 27, 2004. In the few days before, my food diary reveals that, in near-collapse during a brief visit to the university, I compulsively ate a Milky Way bar. I also noted in my diary, rather casually, that two of my fingers were numb.
I tried to simultaneously start the diet and finish a colon cleanse, in the belief that this would be particularly healthy. It was my sixth colon cleanse, which involves eating special fibers to remove food debris and mucus lodged in the colon. (I can testify that, yes, food debris and mucus does lodge in the colon.) Dr. Sherry Rogers, MD, gives instructions for a simple, two-ingredient colon cleanse in Wellness Against All Odds (in print from Prestige Publishing).
I finished the colon cleanse, but I couldn't sustain the diet.
I most certainly went into withdrawal. I had chills; I was groggy and uncoordinated. (Unfortunately, that is not an unusual condition for me.) On January 28th, I met a friend at a fast food restaurant, where I drank water. Afterwards, I stopped at a bookstore. When I came out in an hour or so, I had forgotten where I had parked. In fact, I had forgotten how I had gotten there: I had a vague impression that someone had dropped me off.
The diet ended in the consumption of Minute Rice and white pasta. My fingers went numb again.
I started the diet for a second time on February 1, 2004. The first days were uneventful, as the worst of the withdrawal was already over.
My hand function improved significantly around February 7th.
I was pretty weak. Without stimulant foods and food additives, I could barely get from one place to another. No wonder that whenever I had been going to the natural foods store or to the university, I consumed some stimulant--orange juice, chocolate soy milk, Snickers--to get the energy to get home. On plain, bland food, my energy level was revealed as close to zero.
I stopped all unnecessary activity--something I would clearly have done years before if I hadn't been hopping myself up with fruit, sugary foods, food additives, and food reactions--and ate frequently throughout the day.
Around February 14th, my hand function improved again. I felt my ongoing pain was improved an additional 25%. Of course, the longer--months, years--that I have continued the diet, the more comfortable I become from a pain standpoint. But even by the second week, this was no longer my main goal.
The diet had become an end in itself. It had no immediate impact on the chronic fatigue syndrome--in fact, I had less energy and was more impaired--or on the chemical sensitivities. But the diet changed how I felt about food.
I had no serious cravings. Occasionally, I would think idly about, say, chocolate ice cream, but I had no desire to actually eat it. For practical purposes, my addictive thoughts and behaviors concerning food were gone.
An actual addictive example from before the diet: going out at 2 a.m. to buy Hostess cupcakes. (I didn't keep junk food around the house.)
I personally believe the main source of my crazy food behavior, and even crazy behavior in general, was food additives. The relief of their absence more than made up for the loss of their stimulant qualities. One friend immediately noted how much more relaxed I was.
My only complaint with the monotony of the Ancient Inca Diet was that I could eat only so much of the four staples per day. I was hungry a lot. My sweat smelled bad: presumably my body was dumping toxins. My mind was clearer and I slept less.
The supplements that I tried first were those recommended by Dr. Rogers in Pain Free in 6 Weeks (Prestige Publishing): magnesium and an omega-9 fatty acid called cetyl myristoleate. (My doctor told me to find a magnesium supplement I could tolerate. It took two tries.) Also, vitamin C, DHA from algae, ginger, and digestive enzymes.
As mentioned, in the first three months I met my self-imposed requirements: no Grass family (including wheat, corn, rice), legumes (except carob) including soy and chocolate, sugar, dairy, nightshades, citrus, or food additives.
In the three months, through judicious testing, I was able to add in, as staples: ostrich, romaine, chicory, radishes, seaweed, flaxseed, avocado oil, noni juice, dates, prunes, almond butter, and garlic.
Quite a few foods did not work out: pear, starfruit, persimmons, kiwi, pumpkin seeds, sunflower seeds, squid, pork; and, notoriously: carob and pineapple; and later, butter and amaranth. Early experimentation showed I had minor problems with beef, chicken, eggs, and cucumber, all of which I later regained tolerance to.
In the past, I had tested foods according to my doctor's instructions. To test a food, you abstained from it for four days, ate it for four consecutive days, abstained for four days again, and tested again for four consecutive days. It was evident to me, even at the time, that four days was not long enough for me to lose tolerance to a food. My guess on the appropriate time period was two weeks. And, when I tried a food after two weeks of avoidance, I never had to try it more than once--I always got an immediate and sometimes violent effect.
Some time later, I learned from Autism: Effective Biomedical Treatments (out of print from the Autism Research Institute), by Jon A. Pangborn, PhD, and Dr. Sidney M. Baker, MD, that usually five days of avoidance is sufficient to uncover the effects of avoidance or testing, but two weeks of avoidance are recommended; and that in some cases, more than two weeks may be necessary. The book also explained, as I learned from experience later, that wheat gluten may take months for a response.
After the first three months, I decided to go ahead and test, also known as "challenge," any food, including the suspicious foods that I had singled out to avoid. In fact, I decided to eat anything I wanted (once) and call it a "test." I just wouldn't add the food to my regular diet unless I clearly had no problem with it, and I wouldn't make a habit out of any processed food.
An early test with an extreme reaction was of carob, the chocolate substitute. I bought a coffee-can of powdered carob. It turns out that you can make a kind of Hershey's Syrup from powdered carob by mixing it with safflower oil, and you can eat it with a spoon.
The morning after I ate this--food reactions are often, even typically, delayed--I woke up feeling as if I had been beaten with a board. But that didn't stop me--I ate more. The following morning, I was in a near-stupor and a lot of pain. My muscles were so weak that it took numerous tries to open my eyelids. I had to admit that carob affected me very badly. I had to stop the cetyl myristoleate, which had carob as a dye in the softgel coating.
In March, I juiced fresh pineapple--the first pineapple I'd had in seven weeks. In a surprise extreme reaction, the juice burnt not only my throat, but my nose, nasal passages, and sinuses. In the past, with the four-day-on, four-day-off testing, I had never found any improvement during avoidance or reaction during "challenge" with pineapple.
My first test of butter caused gut cramps and near-vomiting. When I cooked amaranth, the alternative Mexican grain (not from the Grass family), the smell of the cooking alone caused cramping that I initially thought was food poisoning. I (foolishly) tasted the amaranth anyway and strongly disliked it.
After six months, I tested chocolate, with an organic, gluten-free, dairy-free candy bar. I had immediate dizziness, and I spent 45 minutes sitting on the porch with my mind racing. I walked until I should have been exhausted and worked half the night at my computer until my hands were crippled. Then my muscles couldn't relax enough for me to sleep. I was hung over for three days. It was totally not worth it.
My tests showed that some of my ill health was directly due to intolerance to foods and additives. Notoriously: grogginess, weakness, pain, irritable bowel syndrome, and, especially, waking in a near stupor. Interestingly, a lot like my reactions to pesticides.
In May 2004, my neighborhood--including directly over my house--was aerial sprayed for gypsy moths. Gypsy moth spray consists of spores of Bt (a natural pesticide) in a base of food oil. I duct-taped the windows and stayed inside. I didn't know what to expect.
The effect of the spraying was a bad case of hay fever and a reaction to every food I ate--a lump in my throat, flushing, etc. I returned to the most restrictive, Ancient Inca Diet--turkey, quinoa, sweet potatoes--and in several weeks I was back to where I was before the spraying.
Then I resumed expanding my diet.
From Dr. Rogers's book You Are What You Ate , I had become interested in macrobiotics. It was a great help in finding new foods: brown rice, daikon, squash, seaweed. I thought about whether I would next try the macrobiotic diet, as she had recommended in Pain Free in 6 Weeks (Prestige).
But, while I ate many macrobiotic meals, I never managed an entire day on strict macrobiotics--which consists mainly of brown rice and certain prescribed vegetables. I felt, based on my reading of Sally Fallon's Nourishing Traditions: The Cookbook that Challenges Politically Correct Nutrition and the Diet Dictocrats , that as a constitutionally weak person, I probably needed, at the very least, to be eating a reasonable amount of quality meat and fat.
I continued with the basic non-allergic diet I had developed. I regained tolerance to beef, chicken, eggs, cucumber, apples, and other basic and enjoyable foods. Eventually, however, sweet potatoes and quinoa wore out their welcome.
It was about a year after I started the rare food diet when I realized that I had not reacted to a "test" for quite some time. I had stabilized my foods!
The rare food diet did exactly what it was supposed to do. And, food was now more enjoyable than ever before. I had no interest in ever eating food containing additives again.
In late 2005, my doctor told me to read Dangerous Grains: Why Gluten Cereal Grains May Be Hazardous To Your Health (see my review) by Dr. James Braly, MD.
Dr. Braly believes that for the gluten sensitive, gluten is a foundation allergy from which all other food allergy / sensitivity / intolerance stems. Then, continually battering the immune system with gluten leads to, among other consequences, autoimmune disease. The preface describes an Australian MD who kept a list of patients cured of lupus, reversing both blood tests and symptoms, with a program that included 100% gluten avoidance.
I was a little shocked. Just from the description in the book, it seemed probable that I had celiac disease, in which gluten damages the intestinal lining and causes malabsorption and malnutrition. For practical purposes, it didn't matter; I was 100% sure I was gluten sensitive, and the treatment was the same: 100% avoidance of gluten for an indefinite period of time.
I was disappointed. Previously, I could eat anything I wanted and call it a "test." With gluten, there could be no testing. No one knows how much gluten it takes to cause intestinal damage, symptoms of environmental illness, or autoimmune disease in an individual. No one knows how long avoidance could take to get health improvement, either. According to EnteroLab, it could take two years for an adult to recover from gluten-induced intestinal changes. And, there would be no adding gluten back into my diet at some later period.
Wheat was part of my new diet; it had eased back in with seemingly no symptoms, and I ate it infrequently. Organic pasta seemed to cause no problems. With commercial bread, I got a lump in my throat, but that was unsurprising and hard to pin onto gluten. When I ate a large amount of sprouted grain products, I did get some gut cramping.
I decided to assume I was gluten sensitive, but not assume I had celiac disease. I would avoid all overt gluten, which, because of the way I was eating, was not difficult. On rare occasions, I would allow myself, in a restaurant, to eat food with an uncertain gluten status: bacon bits, hamburger, guacamole. This was my compromise.
In 2006, with only two slips of eating wheat, I saw improvement in my hormone profile related to adrenal function. I resolved to try harder in 2007 and started to keep track of the number of times I ate something which I could not be sure if it contained hidden gluten. I ate possible hidden gluten six times during 2007. Now I was getting results.
In sufficiently small amounts, I felt I could tolerate cheese, the only dairy product I ate. My consumption seemed addictive, however, and I would have gut cramping when I ate too much or after long enough avoidance.
After going gluten-free, the systemic effects really stood out when I ate cheese. I would wake up groggy; my hands would be stiff and their function affected with a worsening of their repetitive stress injury. After dropping cheese, and therefore all casein, both my hand function and gut function improved further. I did begin using ghee, which is butter clarified to be free of casein, one of the allergenic milk proteins that has some similarities to gluten.
Subsequently, I had normal gut function. I had to read books, such as Dr. Jensen's Guide to Better Bowel Care: A Complete Program for Tissue Cleansing through Bowel Management , by Bernard Jensen, to find out what normal gut function was supposed to be like. But I had it.
This did not happen overnight, or from any one intervention, but developed gradually throughout the diet.
Any irritable bowel syndrome episode now is rare and has an obvious cause. When I originally went sugar-free, in 1994, 95% of my irritable bowel syndrome went away; but I think it was just the most obvious sign of a malabsorption syndrome that to reverse required, among other things, gluten avoidance.
Here is what it took for me to reach this point: seven colon cleanses; elimination of MSG and other food additives; the rare food diet; probiotics; digestive enzymes; gluten avoidance; and casein avoidance.
Changing my diet changed everything.
I feel like a more relaxed, stable person, as if foods and additives had been stimulants / depressants.
I feel better about food. Whole foods are more satisfying than the standard American diet. Learning to cook is less nutty than my former lifestyle of trying restaurants and junk food. I regret that restaurants do not serve real food, but until they do, I won't be patronizing them.
Proper gut function should help reverse any malabsorption and malnutrition. It also means that I get less sick from the illness episodes connected with chronic fatigue syndrome and chemical sensitivities.
Don't eat stuff that makes you sick.
How could you recover from a serious illness, or prevent a serious illness in later life, if you eat stuff that makes you sick?
This requires education. It is necessary to learn what nutrition the human body needs (hint: not Hostess cupcakes, and not the food pyramid, either). I recommend Sally Fallon's Nourishing Traditions: The Cookbook that Challenges Politically Correct Nutrition and the Diet Dictocrats .
It is also necessary to learn techniques to discover what makes you sick. My body was so overwhelmed by food issues, including probable intestinal damage, that it could no longer indicate what was making it sick.
The rule, as a life lesson, also suggests corollaries: Don't buy stuff that makes you sick. Don't do stuff that makes you sick.
I hope I've made it clear that I couldn't have changed my diet, and thus changed my life, without the help of my friends. Thanks especially to: Ken, Christina, Muriel, Joan, and Zoë.