Our Family's Story of Food Allergies
A surprising number of people who visit this website or have my books ask me about my experiences with different allergy treatments and diets. Since all writing is a reflection of the life of its author, the experiences my family has had with food allergies contribute to my opinions (some of them unconventional) about foods, diets, and other treatments discussed in this website and my books. Therefore, I am including the personal story of my family’s history of food allergies.
GRANDPA’S STORY
My father had an ulcer when he was a young man. At that time, the treatment for ulcers included a diet rich in dairy products. He recovered from the ulcer, but in his early thirties began having dizzy spells. These were finally diagnosed as milk allergy. He eliminated all dairy products from his diet and enjoyed good health for many years. Thirty years later, when he developed prostate cancer and wanted to give his immune system all the support he could, he underwent provocative testing for food allergies. He had not developed any new allergies even though he had not rotated his foods.
When my father became allergic to milk, my mother read food labels when she went grocery shopping and became an expert on cooking without milk. Thus, I grew up knowing that some ingredients that most people consider essential to a recipe really are not necessary. When I got married, my husband watched me make mashed potatoes and asked, “Where is the milk?” I actually had to learn to use milk in cooking.
My father’s milk allergy also taught me that one can accept dietary restrictions cheerfully and appreciate improved health rather that dwelling on limitations and restrictions.
JOEL’S STORY
My son Joel was born in January, 1983. His early infancy was difficult because of “tummy trouble” which his doctor said bordered on being colic. He was exclusively breastfed for the first several months of his life. I was on an elimination, but not a rotation diet at that time and noticed that whenever I ate citrus fruits he became more fussy. So I eliminated citrus from my diet until he was weaned. When I was retested for food allergies when Joel was about two years old, I found that I was allergic to citrus. At that time I learned that when a nursing mother passes traces of a food to which she is allergic to her child in her milk, along with antibodies to that food, the baby can experience allergic symptoms even if he is not allergic to that food.
After Joel was a few months old, his “tummy trouble” passed. He had sensitive skin and was prone to rashes. If he spit up in his sleep, he would awaken with mild eczema on the cheek that he had slept on. When we introduced wheat into Joel’s diet when he was almost a year old, he developed diarrhea. His dad thought that perhaps I was imagining the problem because of my wheat allergy, so we tried wheat again a few weeks later. That time Dad changed his diapers and agreed with my assessment of the situation. So Joel never ate wheat.
At the age of eighteen months, Joel developed eczema on his legs whenever he played outside in the grass. His doctor recommended long pants and ointments, and the problem was controlled.
When Joel was twenty-two months old, he sampled some eggnog in the grocery store. By the time we reached the checkout he was clawing at his arms, which were covered with eczema. Since he had eaten all the ingredients in the eggnog except eggs without problems, we assumed that the eggs were the culprit. Until this time we had never fed him eggs, nor had I eaten them when pregnant or nursing him. But after this experience we assumed that he was allergic to eggs. So Joel never ate eggs again.
Shortly after Joel’s second birthday, I learned about rotation diets and began rotating my foods. However, since two year olds have definite ideas about what they will eat and when, we did not try to put Joel on rotation also; rather he just continued to avoid wheat and eggs. We also did not let him eat chocolate because whenever he ate it he would “climb the walls.”
At age four Joel began having eczema in the winter when he had no exposure to grass. I knew that his extreme fondness for milk and peanut butter could indicate food allergy, so we eliminated them from his diet. However, his eczema did not clear up, so in May, 1987 we took him to my allergist. Blood tests showed several possible problem foods. Using elimination and challenge testing at home, we confirmed that he was allergic to wheat, milk, eggs, rice, corn, potatoes, peanuts, and chocolate.
We put Joel on a rotation diet that eliminated his problem foods for about six months. Then we began reintroducing them, and he was able to tolerate most of them at five day intervals on a carefully rotated basis. He could eat corn once or twice a month, but he developed eczema if he ate it as often as weekly. But in general, as long as he followed his diet, he did quite well.
At age eleven, Joel’s eczema became a persistent problem in spite of dietary manipulation, and he sneezed and had watery eyes whenever he left the purified air of our home. At that time I had been on low dose immunotherapy for almost a year, so Joel had seen what it was like to be “on restrictions” for a shot. We knew that we had to do something about his allergies but did not want to subject him to the rigors of the low dose immunotherapy protocol without his full consent and cooperation. So we sat down and read the patient instruction booklet (“the pink book”) together and let him make the choice between low dose immunotherapy and conventional allergy treatment. He chose low dose immunotherapy, fully aware of “the rules.” He obeyed these rules at shot time more consistently and with more maturity than some adults do.
When Joel was tested before beginning low dose immunotherapy, the tests showed that, along with many inhalant allergies, Joel had developed an allergy to yeast. Joel received his first low dose immunotherapy injection in June, 1994. At about a week after his shot, I noticed that his morning cough was lessening. At ten days after his shot, his eczema totally cleared up for the first time in months. Because I thought it would return as soon as we liberalized his diet when we went “off restrictions,” I took pictures of his arms on the eleventh day after his shot. When we got “off restrictions,” he began eating everything (literally!) and his eczema did not return until the effects of his shot began to wear off about five weeks later.
After his first year of low dose immunotherapy, Joel was able to go progressively longer between shots before they began to wear off. By the time he was in high school, he was taking them only once a year in the summer. He was totally unrestricted except around the time of his shots. He ate a sugar-free healthy diet at home, but when having fun with his friends was able to enjoy whatever they were eating, including things he thought he’d never eat again like pizza, popcorn, and ice cream.
Joel is now an adult, a totally independent, self-sufficient graduate student with an electrical engineering fellowship, and is living half-way across the country from us. His allergies are no longer a problem and have not kept him from doing anything he wanted in life. He still takes a shot once a year. We fully expect him to have a healthy, normal, unrestricted life. This is indeed one of the greatest blessings any parent of an allergic son or daughter can experience.
MY STORY
I was an allergic child. I began taking conventional allergy shots for inhalants at age ten. When I was in my early twenties, I developed joint problems which I was initially told were rheumatoid arthritis, although the rheumatologist I later consulted called the problem arthralgia. I was treated with ibuprofen and later with naproxen, two nonsteroidal anti-inflammatory drugs.
In the fall of 1978, I had an acute and severe intestinal “bug.” For about two months afterwards, I got diarrhea whenever I ate raw vegetables or fruits. But the problem eventually went away and I forgot about the “bug” until many years later when I began to wonder if this “bug” was either the beginning of a parasitic infestation or a first episode of Crohn’s disease.
In the spring of 1979, I began having trouble with dizziness and headaches. Because of my father’s similar experience with milk allergy, I tried eliminating milk from my diet, but it did not help. I consulted several doctors, had CAT scans and other tests, and tried many medications to no avail. The cause was finally determined in October, 1980, when provocative testing showed that I was allergic to wheat, eggs, beef, tomatoes, lettuce, and chocolate. When I eliminated these foods from my diet, I became aware of several other foods that I had not been tested for that were also problems. The elimination diet cleared up my dizziness, headaches, and even the joint problems. I was instructed to try to reintroduce allergenic foods into my diet after six months of avoidance. When I did so, I was not able to tolerate any of the foods. After moving back to the purer environment of Colorado in late 1981, I felt quite healthy and we started our family.
In late 1984, I began experiencing food allergy symptoms again. I consulted a new allergist, who I had heard successfully treated food allergies with neutralization. (Click here and see The Ultimate Food Allergy Cookbook and Survival Guide for more about neutralization). Of the 21 foods he tested me for, I was allergic to 18. My new problem foods included all grains, cow’s milk, citrus fruits, beans, chicken, pork, lamb, turkey, and several other foods. I began a rotation diet which included none of my problem foods and felt much better. After a few weeks of taking food neutralizing drops, I was told to try reintroducing foods into my diet. I was unable to tolerate any of them. However, I was happy to feel better on my new rotated diet of unusual foods. Although food neutralization did not work for me, I was not a complete neutralization failure; the drops I was given for inhalants and chemicals were helpful.
I was healthy until 1991 when I developed severe diarrhea, fever, anemia, and weight loss. Stool tests showed the presence of Candida albicans but no Salmonella, Shigella, or parasites. My doctor gave me Nystatin and, on the assumption that I might have contracted “enteropathogenic E. coli,” (the strain of E. coli often involved in food poisoning) also treated me with the antibiotic Cipro™. I felt better, but within a day of stopping the Cipro™ was back where I started. After many tests, the problem was diagnosed as Crohn’s disease, an inflammatory bowel disease.
The gastroenterologist who diagnosed the Crohn’s disease told me that the Crohn’s had caused my food allergies. At the time I did not believe it, because I knew I had food allergies for eleven years before the Crohn’s was diagnosed. But later, I remembered the intestinal “bug” I had thirteen years previously, and wondered if it had been an episode of Crohn’s disease. The doctor also told me that diet had no influence on the disease. However, since I was on a rotation diet, and thus able to isolate and identify reactions to foods, my body told me that what I ate did indeed have a profound effect on the severity of my symptoms.
The milder drugs used to treat Crohn’s disease did not help me much, so I was put on cortisone. It was effective but had unpleasant side effects. When my dosage was tapered and I eventually stopped taking it, the diarrhea gradually increased. However, I did not tell anyone because I hated the side effects of prednisone and did not want to take any more of it.
About that time, in the spring of 1992, I visited my allergist for the routine yearly testing necessary to keep my allergy shots current. The tests showed a major increase in my reaction to Candida albicans which I assumed was a result of the antibiotics and cortisone I had taken. However, when I discussed the test results with the doctor, he thought the Candida problem might have preceded and contributed to the Crohn’s rather that having been caused by its treatment. He put me on a low-yeast diet and Diflucan™, and my diarrhea improved as much as it had on cortisone, without any of the unpleasant side effects.
For several months, I did fairly well, as Crohn’s patients go, on a low-fiber rotated diet of buffalo, duck, several kinds of fish, and vegetables cooked to mush. However, any deviation, such as ¼ cup of unsweetened applesauce, would cause a flare-up of the Crohn’s disease. Then, in November, 1992, I began getting headaches from buffalo. Problems with duck followed, and then I lost my tolerance for the kinds of fish I had been eating and some vegetables. By January, 1993, I would go to the fish counter of our health food store, buy types of fish I had never eaten before, and react to them the first time I ate them. Since I no longer had any no-fiber flesh foods to eat, I reintroduced amaranth, quinoa, exotic tuber starches (malanga, cassava, white sweet potato, and true yam), and three nut butters into my diet. Home-ground nut butters gave me diarrhea because I could not grind them to complete smoothness, so I was limited to the three very finely ground commercial nut butters I could tolerate. Thus, on one of my rotation days I was eating only quinoa and carrots and felt like I was about to starve. As far as diarrhea went, I was not doing as well with the higher fiber diet.
One takes desperate measures in desperate times, so in spite of the fact that at that time the nearest doctor using low dose immunotherapy was 420 miles away, necessitating an 840 mile round trip on shot day because we could not find a chemically safe place to stay near his office, I began low dose immunotherapy in March, 1993. With my first shot, I noticed a dramatic improvement in my inhalant allergies, was able to add a few foods to my diet, and had less diarrhea than in months. I continued to make small gains with low dose immunotherapy for about a year. Then, with my March, 1994 shot, my pollen allergies worsened and I “lost” some foods. For the next year I continued to do poorly and lose progressively more foods. Since severe food allergies can take up to two years to respond to low dose immunotherapy, we tinkered with my shots and considered that I might just be a slow responder. In 1995, we began exploring possible interferences with low dose immunotherapy, such as hormonal factors, and finally considered the possibility of intestinal dysbiosis. (See The Ultimate Food Allergy Cookbook and Survival Guide and click here for more information about dysbiosis).
In September, 1995, I had my first CDSA with parasitology testing. (CDSA stands for comprehensive digestive stool analysis. (Click here for more information about this test). It showed severe dysbiosis with bacterial pathogens, but no parasites were detected even though the test included a purged stool specimen. No Lactobacillus nor Bifidobacterium was present. I began treatment with botanical antibacterial therapies, probiotics, and nutritional factors to help the intestine heal. I had another CDSA in November, which showed severe dysbiosis again. My score was two points worse and I had Salmonella. I then took several additional botanical therapies plus a course of Cipro.™ My third CDSA in February, 1996 was four points better and the Salmonella was gone, but the results were still not good. My doctor was researching more effective treatments for dysbiosis. While I waited for him to come up with an answer, I consulted a nutritionist who helped me begin to correct some nutritional imbalances and improve my digestion. I also began to learn everything I could to help myself.
At the same time, after seeing the results of my third CDSA, another doctor’s nurse-practitioner called Great Smokies Diagnostic Laboratory, where the test was done, for advice. She asked them how I could still have large amounts of the unfriendly bacteria Klebsiella in every CDSA after having taken five months of botanical medicines that their testing showed it was sensitive to and a course of Cipro,™ to which it was also sensitive on testing. They asked her if I were taking FOS. (fructooligosaccharides, a supplement discussed on pages 20 and 250 of The Ultimate Food Allergy Cookbook and Survival Guide). When she replied, “Yes,” they told her to have me stop taking it because it supports the growth of Klebsiella. I stopped it two weeks before my March, 1996 low dose immunotherapy injection, while still taking the botanical antibacterial remedies. My March shot worked better than any shot had in the previous two years. I suspect that stopping the FOS allowed the botanical medicines to finally knock down the Klebsiella.
As my food tolerance improved, I was able to tolerate homemade goat’s acidophilus milk. (For the recipe, see page 61 of The Ultimate Food Allergy Cookbook and Survival Guide). When I stopped taking the antibacterial botanical remedies to do my fourth CDSA in June, 1996, my symptoms did not worsen as they had every time I had stopped the botanical remedies previously. My score was down into the “mild dysbiosis” range with no bacterial pathogens present. I had good amounts of Bifidobacterium but still had no Lactobacillus.
My doctor recommended taking yet another brand of probiotic supplement containing a DDS-1 strain of Lactobacillus. I had taken dozens of bottles of several different brands of DDS-1 containing supplements in the previous nine months, but began taking the new brand. Also at this time, I was first able to purchase sheep’s milk yogurt. (Click here to purchase sheep yogurt). Because I now had milk products from two animals to rotate I was able to eat more of the fermented milks than I previously could.
My fifth CDSA in November, 1996 still showed no Lactobacillus, the Klebsiella was back, and my score was again in the “severe dysbiosis” range. My doctor said, “There is something here that I’m not seeing,” and ordered a stool test performed by a different lab which also included a saliva test for antibodies to organisms that might be difficult to detect in a stool culture or parasite test. This test showed antibodies to the parasite Entamoeba histolytica. I underwent several courses of treatment with anti-parasitic drugs taken two or three at a time (at least one drug to kill the cysts and one to kill the active parasites in each round of treatment) plus long-term botanical remedies to eradicate the parasite. I repeated the saliva antibody test several times to determine if the drugs were effective and had negative results followed by positive results several times. My CDSAs continued to show Klebsiella most of the time and never had any Lactobacillus present.
When someone living in the “clean” United States has a parasite, the question is “How did you get it?” I believe that I was infected with Entamoeba histolytica over twenty years before it was diagnosed while we were living in California and I was working in a hospital with Asian immigrants. My problems which were later diagnosed as food allergies began a few months after having a three-month episode of diarrhea which was probably the initial parasitic infection. When I asked the doctor who originally diagnosed my food allergies why I had suddenly begun having problems with foods, he should have looked for the real answer to that question and treated me for the parasite. It probably would have been easier to eradicate then than it was after a long-term infection. Don’t rule out parasites just because you haven’t traveled to a Third World country! The world and its parasites can come to you wherever you live. Eating in a restaurant may expose you to food cooked by an immigrant who may not even realize he or she has parasites and who is in too much of a hurry for thorough hand-washing after a bathroom visit. Parasitic infection can be a trigger for a host of problems including food and chemical sensitivities.
The treatment of the parasite was definitely a major turning point for me, and as my health improved, I became less involved with health issues and much more involved with life. Therefore, I don’t have as much of a paper trail of lab test results and dates of what I did when with what results. However, I remember that I did continue to explore new therapies that led to further improvement. In the late 1990’s, a new probiotic, Culturelle™, became available. (For more information about this supplement and Lactobacillus GG, see page 27 of The Ultimate Food Allergy Cookbook and Survival Guide). After taking this supplement, my CDSAs finally showed the presence of Lactobacillus. However, they still also show Klebsiella and moderate dysbiosis.
I tried the specific carbohydrate diet (SCD) as described by Elaine Gottschall in Breaking the Vicious Cycle and followed it strictly for a few years in addition to avoiding my food allergens and following a rotation diet. The SCD greatly improved my intestinal function. I still follow it most of the time but can eat starch occasionally and in moderation without problems now.
I have continued to take low dose immunotherapy at about 6-month intervals. What looked like a terrible problem in 2001, the withdrawal of EPD from the United States, turned out to be a good thing for me. EPD was replaced with LDA, which contains an Americanized antigen mix and gives more complete coverage to Americans than a mix based on British allergenic exposures. I have done much better on LDA than I did on EPD. The addition of perfumes to LDA has really eliminated my chemical sensitivities, and the list of foods I can eat continues to expand.
I am still not completely “cured” and no longer waste time wanting to be. I am no longer starving and I have not had a Crohn’s flare-up in over ten years; that is good enough for me. I’m in my 50’s now. My most important job in life, that of raising my children, is almost finished as my younger son John is now in college. I’m ready to make the quantum leap from “a lot healthier than I was” to “better than I’ve ever been” when I go to heaven. Like the Apostle Paul, “I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me a crown of righteousness, which the Lord, the righteous Judge, will award to me on that day.”{1} The older I get, the more eager I am to escape all the unrighteousness and injustices of this world. The poor are getting poorer and the rich are getting richer and oppressing the poor (and even the middle class, like my family) more and more at every turn. There are “wars and rumors of wars” around the world and it seems that those in power encourage war. I’m not sure I want to see what’s coming next in the world and I know where I’m going when I leave this world. I have also seen enough tragedy and disability among older members of our extended families to really mean it when I say that I never want to be a burden on my family.
Many people with food allergies are desperate for more than just food and help with their medical problems. My final recommendation is for a “supplement” that can give you the hope for the future that I have. I know it’s politically incorrect to espouse one religion, and I am very much against cramming Christianity bundled with “democracy” and “capitalism” (i.e. greed and oppression) down the throats of the whole world, but I’d like to encourage you to just consider the claims of Jesus Christ with an open mind, much like taking a new probiotic and seeing how it works for you. Get a Bible (possibly an easily understood version like the Living Bible or New Living Translation) and read the Gospel of John, one chapter per day. This experiment will take about 10 minutes a day for three weeks and could lead you to a greater “cure” than all of the treatments, supplements, and diets discussed on this website put together.
Finally, as you are traveling along your road back to health you may feel like this: “We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves, but on God.”{2} My hope for you is not only that you will get to the root of your health problems and solve them, but that you will also come to realize that in everything, both good experiences and bad, both temporal and eternal things, you must rely not on yourselves but on God. It is wonderful to eat and be satisfied; those of us who have had times with very little food because of our allergies appreciate eating and being satisfied like few people outside the Third World do. But the goal of life is beyond eating and being satisfied. It is to serve and “praise the Lord your God” – for blessings such as food we can eat or, in any circumstances, whether we can eat or not, for His gifts of life and His love.
Footnotes:
1. II Timothy 4:7-8.
2. II Corinthians 1:8-9