After years with an autoimmune disease, I’ve formed a picture of what might have caused autoimmunity to arise in my body. Although I’m not an expert, this blog post represents the best thinking I’ve found so far. I hope it’ll be useful to both autoimmune patients and healthy people.
Doctors and medical websites emphasize that we don’t yet know the causes of my main autoimmune disease, ulcerative colitis (UC). “Just focus on getting better,” many doctors will say. “Don’t worry about the cause. Don’t blame yourself.”
That thinking is well-intentioned, but it feels incomplete to me. Clearly, something made me sick. If it was something I did, I want to know what, so I can stop doing it and keep my disease from worsening!
So I’ve ignored those doctors’ admonishments and done a bunch of research. 🙂
I see my colitis as a twofold problem: it’s a gut disease and an autoimmune disease, with autoimmunity as the overarching ailment. My overactive immune system attacks various parts of my body—my skin in various places, and my colon, which is like a continuation of my skin inside my body. It’s intriguing to ask why autoimmunity popped up in my gut specifically, and I’ve speculated that maybe this relates to the microbiome.
But I’ve also wondered why I might be prone to autoimmunity in the first place. This post is about that question.
Table of Contents
I’ve separated the post into several sections, each focused on a different factor that may have contributed to my disease. Each section has links to more information and a list of things you can do to avoid or minimize these factors in your own life.
Because the post is long, here’s a little table of contents, so you can jump to specific sections:
I hope this post will provide a good reference for others and even for myself.
1. Genes
It’s clear that genes play a role in ulcerative colitis and autoimmunity as a whole. The National Library of Medicine has an excellent resource on genes and UC, and many scientific articles document the link between genes and autoimmunity, for instance here.
At first glance, this genetic link might seem like a reason not to look deeper. If UC or other diseases are caused by genetics, don’t we have our answer? But the truth is, both genes and environmental factors are likely culprits.
As the National Library of Medicine says, “A variety of genetic and environmental factors are likely involved in the development of ulcerative colitis.” It’s similar with celiac disease and many other illnesses. You can have the genes but never get colitis, and it’s even possible for only one identical twin to get an autoimmune disease, indicating that environment also plays a role.
So, some good questions are: Why are these autoimmunity genes being switched “on” so often today, in our modern world? Why are we experiencing an autoimmune epidemic? And why are the genes being triggered in each specific case—i.e., which environmental factors, such as toxins, food, and stress, are at play in each patient’s life?
But you can educate yourself about autoimmunity, and you can know that if someone in your family has an autoimmune disease, you’re more at risk. (And not necessarily for the same disease—autoimmunity often shows up differently in different family members.) Even if no one in your family has a autoimmune disease, you may still become the first to develop one. We’re truly all in this together.
2. Synthetic Toxins
Many researchers think synthetic toxins are a major reason behind today’s autoimmune epidemic. Chemicals that we humans have invented, and that don’t exist in nature, are ubiquitous in our modern world and are often not closely regulated.
That has historically been true in the United States—more than 80,000 chemicals have been approved for commercial use in this country, with another 2000 new ones approved each year. And yet, prior to 2016, the National Toxicology Program’s website read, “We do not know the effects of many of these chemicals on our health.”
In 2016, a law was finally passed under President Obama to strengthen the old 1976 Toxic Substances Control Act, which was notoriously weak. The European Union had passed their own strong law in 2006—but in our country, lobbying from the chemical industry had delayed similar legislation. As a result, Americans have, for my entire lifetime, been constantly exposed to potentially unsafe chemicals in our homes, cars, and workplaces with little regulation.
And even post-2016, harmful chemicals are still everywhere. They’re found in common household cleaners, upholstery, and personal care products, even in some that are labeled “organic.” Many are endocrine disruptors—i.e., they interfere with our hormones and can trigger autoimmune disease.
Common toxins include BPA, dioxins, atrazine, pthalates, fire retardants, lead, arsenic, and mercury. They’re impossible to avoid. BPA is still all over despite being a known carcinogen; BPA-free plastic may be just as harmful; mercury is found at unsafe levels in 84% of all fish and around 21% of women of childbearing age.
Over the last few generations, we’ve all become guinea pigs in our own grand and horrific experiment. We are swimming in a toxic soup.
So, why aren’t we all sick? That’s where genes come in. Again, some people are more susceptible to autoimmune disease than others. You can’t know if you’re one of the susceptible people until you fall sick yourself, which is just one reason it’s in everyone’s best interest to closely regulate our chemicals.
At least some researchers believe, though, that you don’t have to have a genetic predisposition to get an autoimmune disease, especially when bombarded with so many toxins in today’s modern world. Certain genes just make disease more likely.
Eating organic food is a start, since, of course, processed and inorganic food is another big source of toxins. If you can’t afford to eat all organic, you can learn which foods are most important to buy organic.
And websites like Wellness Mama have tons of tips and recipes for homemade, affordable skin-care and household products.
Finally, you can support and help defend the legislation that regulates industry on behalf of our public health.
3. Low Vitamin D
It’s not only toxins that are “switching on” the autoimmunity genes for us modern humans. We live and work largely indoors these days, and not only does that mean breathing our upholstery fumes and interacting with a lot of plastic, but it also means missing out on vitamin D, the “sunshine vitamin.”
Low vitamin D increases inflammation, which helps explain why vitamin D deficiency may be linked to autoimmune disease. This deficiency is soaring in the U.S. in recent years, possibly also due to skin cancer awareness and an increasing use of sunscreen.
(In early 2012, a blood test had revealed that I had low vitamin D, myself, although by the time of my illness I had been taking supplements for a year.)
If you can afford to, work with your doctor to find out whether you have low levels. If so, consider taking supplements based on your doctor’s advice.
And balance the need to protect yourself from sun damage with the need to get enough vitamin D. For many people, fifteen minutes or so in the sun per day is helpful. For people in northern climates, paying attention to vitamin D is especially important.
4. Chronic Stress
Now we’re getting into the truly behavior-related factors that may help trigger autoimmunity. Like synthetic toxins and low vitamin D, chronic stress has the potential to confuse the immune system, at least in theory. And while this is something that takes work to change in one’s life, it can perhaps be changed more thoroughly than some of the factors above.
So far, science has found that stress doesn’t cause ulcerative colitis, and there isn’t conclusive evidence that stress causes other autoimmune diseases either. But there is a potential link between stress and at least some autoimmune diseases, as described in this recent study at Harvard.
Whatever science eventually concludes, it does makes sense that prolonged stress would interfere with our normal immune system function. At the first sign of stress, a brain region called the hypothalamus releases adrenaline and cortisol, triggering the sympathetic, fight-or-flight nervous system to kick into gear. When the stress ends, our system is supposed to return to normal, but problems can occur when stress doesn’t turn off. We’re not designed to have cortisol continually pumping through our bodies for many months or years.
Cortisol is involved in the immune response, so chronic stress means that along with the sympathetic nervous system, the immune system is always “on.” This means long-term stress might confuse the immune system, triggering disease.
In The Autoimmune Epidemic, Donna Jackson Nakazawa says chronic stress leaves our immune cells beleaguered. “This increases the likelihood that the immune system will go into erratic overdrive, that mistakes will be made and autoantibodies will attack the body itself.”
Chronic stress is considered another epidemic in the modern world. We’re spread thin and strung out, especially in our twenties and thirties, and perhaps especially among women. Those of us who experienced childhood trauma have an additional burden of stress—and such trauma has been linked to a higher rate of many illnesses.
For each “adverse childhood experience” (ACE) a person has—such as divorce, abuse, neglect, homelessness, or living with an addicted parent—the likelihood of adult illness goes up dramatically. You can take a quick quiz to find out your own ACE score (see previous link). My own score is four out of ten, which is higher (worse) than 85% of women and 91% of men. According to Nakazawa, this means I’m 80% more likely than someone with a score of zero to develop a serious autoimmune disease.
Things you can do to alleviate chronic stress:
Take seriously the need to rest and reduce stress in your life. This often feels countercultural, but it’s one of the most important things we can do for our health. Devote time to exploring healthy ways of coping with stress and calming the nervous system, such as:
- Sitting practices like meditation & prayer.
- Body-breath practices like yoga, qigong, and alternate-nostril breathing.
- Going to therapy.
- Massage and the wonderful (and cheap!) self-massage practice of abhyanga.
- Making time to rest, relax, and indulge: in light fiction, baths, art, and other things you love to do.
The book Balance Your Hormones, Balance Your Life is an excellent resource for calming and nourishing the body and mind.
5. Missing Microbes
Just as we evolved to get sunshine, we evolved to interact with a plethora of microbes. They live on and in various parts of our body: our skin, our guts, our mouths. We first acquire them through our mother’s birth canal, then rapidly build up colonies of them as children through food and our environment. We’re supposed to keep these colonies going throughout our lives in symbiosis. They help us to stay healthy.
But modern humans in industrialized countries have far lower microbial diversity on our bodies and in our guts than do people in less industrialized societies. Our colonies are depleted.
Nowadays, many of us are born via C-section, and from childhood on, we live in a sanitized environment. Our vegetables are often washed with chlorinated city water, which kills bacteria (that’s why it’s chlorinated). We wash our hands often, sometimes with antibacterial soap.
And we take oral antibiotics, which periodically wipe out our gut microbiomes. As a kid, I was prone to ear infections, so I was subjected to numerous courses that doctors probably prescribed without worrying about the risks to my future health. Antibiotics are a crucial and sometimes life-saving form of medical treatment, but not always, and not for all ailments. It’s their overprescription that’s harmful.
A huge portion of our immune system is located in our guts, and in recent years, scientists have proposed that the gut microbiome is supposed to train our developing immune systems when we’re children, helping our bodies learn to discern friend from foe. According to this hypothesis, all our “missing microbes” may be a leading reason behind the autoimmune epidemic.
This idea is called the “old friends” hypothesis, and it’s described in this excellent article. Without as many “old friends” as we’re supposed to have, our immune systems are becoming confused.
The well-known “hygiene hypothesis” is similar but not the same: it’s the suggestion that our immune systems become confused because of lower rates of childhood infection and exposure to parasites rather than exposure to benign microbes. The argument goes that our immune systems aren’t getting enough exercise and thus turn on the body. But this hypothesis has generally been debunked—our immune systems get plenty of exercise, since they’re fighting off all those modern synthetic chemicals!
The article cited above concludes that kids should keep getting vaccinated and should wash their hands after handling dangerous things, like raw chicken. Infections are still bad for us. But it also suggests that kids should perhaps not wash their hands so much after playing in the dirt, so they can commune with more “old friends!”
As far as childhood microbes go, I suspect I fared no better than most other Americans. Like most of us, I probably missed out on many “old friends” as a kid. This deficiency would have helped create the conditions for my autoimmune disease.
Things you can do to get and retain more “old friends:”
- Garden or play in the dirt.
- Hang out with animals.
- Avoid antibiotic overuse.
- Avoid antibacterial soap.
- Minimize soap use in general—there are alternatives, e.g., for the face and the body!
- Avoid drinking chlorinated water, if you can afford a filter.
- Check out my list of ways to improve your gut microbiome.
6. Hormones
A few years into my illness, I read Claudia Welch’s Balance Your Hormones, Balance Your Life, which I mentioned above under Chronic Stress. This excellent book helped me see my illness through the lens of hormones.
I’ve already mentioned hormones in the stress section—cortisol and adrenaline are stress hormones. And I’ve written about Welch’s book elsewhere, too. So here, I’ll just briefly explain a few insights that help illuminate why I might have gotten my disease.
First, I was more likely to get an autoimmune disease because I’m female. Four out of five autoimmune sufferers worldwide are women, although my worst autoimmune disease, UC, affects men and women equally. But I have various other autoimmune disorders, and on the whole, it makes sense that I have them while my husband, for example, does not.
Hormones are thought to be the reason behind the discrepancy. Women’s immune systems are stronger than men’s, especially during our prime—the childbearing years. (That’s possibly why “man flu,” in which men supposedly suffer more than women from the same flu, appears to be a real thing.) But because women’s immune systems are stronger, they’re also more prone to attack the wrong thing: us.
Women’s hormones also change as we age. This is true for men, too, but women’s hormones undergo more dramatic shifts than men’s. The dynamics between hormones and immunity aren’t fully understood, but it’s thought that these changes, with increasing estrogen in our reproductive peak years and diminishing estrogen beginning around age thirty-five, can help trigger autoimmunity.
Estrogen helps counteract the effects of stress hormones on the body. Its reduction when we age changes the immune system’s ability to regulate itself and buffer the effects of cortisol. In my own case, my cortisol had likely always been elevated due to childhood trauma and ongoing stress, which was bearable for my younger body. As I aged, though, my estrogen began to drop, and my cortisol may have overwhelmed and confused my immune system.
Learning about hormones led me to think of many young women’s bodies as potential ticking time bombs! Just because we can handle a lot of stress and self-neglect when we’re young doesn’t mean we can handle it forever.
Hormonal shifts with aging are inevitable, normal, and healthy. But you can strive for the best possible hormonal balance by calming your stress—see above.
Women should also consider avoiding hormonal supplements, including birth control pills, which can further deregulate your hormones. This is a decision to make carefully, but if you’re considering going off birth control, the book Taking Charge of Your Fertility offers one good alternative method of contraception.
Conclusions
The modern lifestyle makes all of us more prone to autoimmune disease. We’re surrounded by synthetic toxins; we avoid the sun and thus vitamin D; we sanitize our environment and deprive ourselves of microbial “old friends.” All of these factors can confuse the immune system. Some of us are also more susceptible to autoimmunity than others, because of our genes, our female bodies, and/or trauma that leaves us with long-term stress.
And our shifting hormones mean we may not develop these diseases till the prime of life. When that happens, the disease can feel out of the blue…but it might actually stem from forces that have been lurking in the body a long time, and that were previously buffered by youth.
I’m female and genetically predisposed to autoimmunity, and I tend towards low vitamin D. I’m prone to chronic stress due to childhood trauma. And I probably lack many “old friend” microbes, due to my many courses of antibiotics as a kid, my not-particularly-healthy diet, and my generally normal lifestyle in a modern, too-clean world. All of this made me pretty likely to get an autoimmune disease.
But I might still have avoided getting sick—I’ll never know what might have been possible if I’d learned to care better for myself earlier. I hope this post will help you manage your own health, whether you’re dealing with autoimmunity or just being proactive.
And I hope reading this has left you empowered. There are many risk factors we can’t control, but there are also a great many we can!
UC patient here. I quit my medication cold turkey during the height of my flare two weeks ago, I figured if I can do it with diet alone, medication will never be necessary for me. Heard many people done it with diet alone on both internet and youtube. I’m going to do the same.
Good luck to you!
Bowie: In my experience, it’s unusual to manage UC with diet alone, although those stories are indeed inspiring. I hope that, if you find your flare continuing, you won’t rule out conventional medicine as an option—it is necessary for many patients and should not be seen as a “failure.” But regardless, I wish you all the best in your healing journey!