Posts tagged ‘Chemical intolerance’

Hospitals Need a ‘No-Fragrance’ Rule

My 85-year-old mother recently had to go to the hospital emergency room for a subdural hematoma. She’s very sensitive to fragrances. Members of her bridge club and singing group know this and respect her wish for no fragrances. Otherwise her eyes and nose water, she gets headaches and has difficulty breathing.

Hospital personnel wheel gurney

Hospitals need to enforce rules because fragrances can aggravate the conditions of patients. Photo: U.S. Navy.

At the ER, a nurse who was very friendly smelled so strongly that I asked him not to come close. It was the beginning of the shift. He apologized and washed it off, thankfully, but he needed to hear this from a patient’s mother who is also a doctor! I do plan to contact the director of nursing services.

People who are pregnant, get migraines or other headaches, or have asthma often need to avoid fragrances. Many hospital staff members themselves are very sensitive because they have been previously TILTed.

– Related Post: How to Thank People Who Wear No Fragrances

TILT is short for Toxicant-induced Loss of Tolerance. It affects people who have repeated low-level exposures, such as in a “sick building,” or a one-time, high-level exposure such as a chemical spill or pesticide application. TILT can cause chemical intolerances that impair a person’s health, ability to work or go to school, and other everyday activities. There’s a widely accepted screening instrument to help identify TILT, called the QEESI, or Quick Environmental Exposure and Sensitivity Inventory. It’s free to download.

Hospital staff members need to avoid wearing fragrances. This is important because patients may be unable to speak for themselves. Even worse, fragrances may precipitate vomiting in chemotherapy patients whose treatments cause nausea. And there’s certainly a need for a no-fragrance rule around newborns, babies or children, and in the intensive-care or critical-care units.

Fragrance policies for the health-care industry are emerging. Some examples:

  • The Centers for Disease Control has issued a policy governing its installations.
  • A Canadian organization, Bryant Community Healthcare System, for example, applies a policy for both employees and patients.
  • And the Massachusetts Nursing Association published an excellent article as far back as 2006 explaining the value and way of setting up such a policy.

I don’t recall fragrances being such a problem when I was a medical student in the 1980s. Then it was tobacco smoke — first hand, second hand and third hand — and smoke retained in patients’ clothing and on their breath. We medical students would stand as far away as possible from these patients when we told them to take a deep breath and exhale. Now people come in the hospital and leave “vapor trails” of fragrances behind them — in elevators, corridors and stairwells.

Fortunately for my mother, I’m a professor and assistant dean for the dual degree MD/MPH program at the UT School of Medicine, which is directly across the street from the hospital. I’ve published many papers, books, and a screening questionnaire for assessing chemical intolerance, but not everyone knows this.

Before I left her bedside last night, she asked for a stack of my business cards so she could pass them around.

Gulf War Research Misses the Point (Again)

Brain damage? That’s the latest theory from researchers trying to explain Gulf War illness. I’m skeptical of the new study and disappointed because medical research again is missing the point.

Thousands of Gulf War veterans have been sick and undiagnosed for more than decade as doctors grope for answers. No one can convincingly explain their many symptoms, which include pain, fatigue and cognitive impairment.

Things won’t change until medical science acknowledges that we are dealing with an entirely new mechanism of disease. We recognize how germs and immune-system failures cause disease. Now we need to recognize that chemical exposures cause disease, too.

The Gulf War veterans are suffering the effects of chemical intolerance probably brought on by one or many such exposures in the war zone. I said so in congressional testimony as far back as 1999.

Photo of Civil War soldiers

Wartime in the past has opened new thinking on the origin of disease. The germ theory, for example, emerged from the Civil War. Photo: Library of Congress.

My conclusions are based years of study. I also served as the environmental medical consultant to the Department of Veterans Affairs regional referral center in Houston for seven years in the 1990s. I’ve evaluated dozens of ill veterans. They have what is called TILT, or Toxicant-induced Loss of Tolerance.

A single exposure or repeated chemical exposures can cause TILT. People with TILT suffer from chemical intolerances that can impair cognitive abilities and cause multi-symptom illnesses.

With the Gulf War veterans, it doesn’t matter so much which exposure caused their breakdown in tolerance — be it pesticides, smoke from the oil fires or pyridostigmine bromide pills. Those things have long since left these veterans’ bodies. It’s the aftermath of these exposures — the new-onset intolerances to low-level chemical exposures — which appear to be perpetuating their symptoms. In some cases, it may be difficult to sort out individual intolerances, or “triggers,” because of a phenomenon called “masking.” This occurs when individuals are reacting to so many exposures that they have overlapping symptoms.

How can we help these people? The single most important task is to sort out and “unmask” the causes or triggers for their symptoms. This requires an environmental medical unit, or EMU. Congress once endorsed EMU research for the Gulf War veterans but never funded it. Only a few EMUs exist in the world. They are environmentally controlled in-patient hospital units designed to isolate patients from exposures that set them off.

Once we get patients to baseline, we can reintroduce things like caffeine, foods and various substances to identify what causes their flare-ups.

This is not the first time doctors have been baffled by wartime disease. During the Civil War, doctors faced a similarly mysterious “syndrome” characterized by fever. Hundreds of thousands of soldiers died. The doctors did what good epidemiologists do today. They classified the cases. Since the hallmark symptom was fever, they classified the cases by fever type — remittent, intermittent, or relapsing. In doing so, they unknowingly lumped together dozens of unrelated illnesses — everything from typhus and typhoid to malaria and tuberculosis.

Today we face this same situation with Gulf War veterans, only this time the hallmark symptom is not as simple as fever. It’s newly acquired intolerances these veterans have been experiencing since the end of the war.

Why TILT Matters

Scientists who discovered the Higgs boson chased shadows and silhouettes for months. Enduring skepticism, they finally produced proof that led on March 14, 2013, to official confirmation of the mysterious and coveted “God particle.”

The quest “was like seeing a person in the fog — you knew there was a person there, but you weren’t sure who it was,” Andy Parker, a Cambridge professor and Higgs investigator, said.

Physics: There are 12 different matter particles — 6 quarks which make up protons and neutrons and 6 leptons, which include electrons and neutrinos. These are the basic building blocks of all matter. Then there are the 4 fundamental forces of the universe — gravity, electromagnetic, strong and weak forces. Each of the fundamental forces is thought to have its own boson, or carrier particle. The Higgs boson may transfer mass and it gains mass by passing through the invisible Higgs field, which extends across the entire universe.

Parallel to these important theories in physics, in medicine there are thousands of different named diseases but a very limited number of theories of disease under which they fall: the germ theory, immune theory and carcinogenesis (mutations leasing to cancer) being most recognizable by laymen.

Toxicant-induced Loss of Tolerance, like the Higgs boson, has remained in the shadows awaiting confirmation by the right researchers with the right tools. It is a transformative disease paradigm hidden by the ever present but elusive phenomenon “masking.” Masking is something we all experience but most are unaware of. It is related to addiction: If we are unmasked and go into withdrawal, e.g. from caffeine, favorite foods or alcohol, we may deliberately ingest a little hair of the dog that bit us to curtail unpleasant withdrawal symptoms.

What exactly is TILT? TILT is not simply an acronym — like the Higgs boson, it is a radical discovery that has the potential to transform medical science and neighboring fields of addiction, toxicology, psychology/psychiatry. Theories of disease affect how we think about underlying causes for illness, what researchers study, and suggest new ways to diagnose and treat conditions as diverse as fever, cancer and asthma. TILT joins a tiny handful of existing theories of disease, taking its place alongside the germ theory (infection), the immune theory, carcinogenesis and endocrine disruption. Currently we are in the germ theory stage in terms of our understanding of TILT, somewhere near the same stage as the germ theory of disease was in the 1890s or the immune theory of disease in the 1960s before the discovery of IgE.

Why has TILT come to light so late in human history — 120 years after the germ theory and 50 years after the immune theory of disease? It’s really no surprise: The causative agents for the germ theory and the immune theory have been with us since humankind began. On the other hand, the synthetic organic chemicals that have led to the 2-step TILT process are new since World War II. Doctors today don’t recognize the huge impact of indoor air. We spend 90 percent of our day indoors and exposed to tens of thousands of evolutionarily novel synthetic organic chemicals.

In science new theories emerge when we observe new patterns that point to an underlying structure we do not understand. Compelling anomalies spur the search for new theories. Observations that don’t fit prevailing paradigms point to the existence of new rules. A period of uncertainty and debate precedes the emergence of a new paradigm.

As with the Higgs boson, enough evidence currently exists to dispel doubts about TILT, but scientific inquiry is the key to advancing our understanding.

Air Pollution’s Harm Reaches into the Cradle

Chemically intolerant patients have for years moved from cities and other pollution sources, e.g., locations that burn wood to heat homes in winter, like parts of the Pacific Northwest, because of air pollution.

Where is the nation’s worst particulate pollution? In 2011, the American Lung Association published a list:

1. Bakersfield-Delano, Calif.
2. Fresno-Madera, Calif.
3. Pittsburgh-New Castle, Pa.
4. Los Angeles-Long Beach-Riverside, Calif.
5. Salt Lake City-Ogden-Clearfield, Utah
6. Provo-Orem, Utah
7. Visalia-Porterville, Calif.
8. Birmingham-Hoover-Cullman, Ala.
9. (tie) Hanford-Corcoran, Calif.; Logan, Utah; Sacramento-Yuba City, Calif.

Smog cloaks Salt Lake City’s skyline in 2011. (Photo: U.S. Environmental Protection Agency)

But this is new: Now couples are being advised to avoid air pollution when they try to conceive a baby. See the Salt Lake Tribune story “Docs: Wait – or get out of Utah’s bad air – to conceive.”

Cities in Utah endure days and even weeks of concentrated air pollution created by temporary atmospheric inversions. Common in winter, inversions trap air pollution close to the ground and push it to unhealthy levels. Utah is not alone. Los Angeles and Pittsburgh live with an even higher risk according to the American Lung Association.

If concentrated pollution can endanger a fetus, think about its overall threat to public health.

Exposures like those in Utah have the potential to initiate TILT, or Toxicant-induced Loss of Tolerance — the two-step disease process that is affecting growing numbers of people in the United States and abroad. Unfortunately, these people may not recognize their illness because of “masking.” Masking? Think of a frog placed in boiling water. Legend has it that the frog immediately jumps out, but if the water is slowly heated, the frog remains and boils to death. He adapts but to his detriment, even demise.

Masking is why we need doctors to screen patients with the QEESI, or Quick Environmental Exposure and Sensitivity Inventory, a medical questionnaire to detect loss of tolerance. And the rise in TILT shows the need for EMUs, or environmental medical units, to isolate the masking elements in patients. Then we can begin to “see” what these exposures are doing to us. The QEESI and EMU are important modern-day tools much like the microscope and physician Robert Koch’s 19th-century postulates, which helped “prove” the germ theory a century ago.

Salt Lake City is rightfully concerned about a new study in the journal Environmental Health Perspectives. It showed the risk of having a baby of low birth weight jumps 10 percent in areas with higher concentrations of particulate matter, including PM2.5. That’s the pollution that spikes in winter inversions and leads to Utah’s pollution. Ultrafine particles easily enter human airways and can travel through the nose to the brain’s limbic system, which regulates mood, behavior, short-term memory and a host cognitive functions.

There are no good choices to avoid the inversion threat, but inaction is the worst of them.

Are we going to become like China, where wealthier individuals equip their cars and homes with sophisticated air filtration devices? Where children wear masks in cities to filter air? What about the vast majority of families who cannot afford this?

Lessons for Doctors and Employees in the Google Incident

Hundreds of Google employees were exposed for months to the toxic chemical TCE, or trichloroethylene, at the search company’s offices in Mountain View, Calif.

No employees reported becoming sick but such exposures can take months or even years to cause problems.

Repeated chemical exposures can produce the condition called TILT, or Toxicant-induced Loss of Tolerance. People with TILT suffer from chemical intolerances that can impair cognitive abilities and cause multi-symptom illnesses.

Cases like Google’s are becoming common worldwide where industrial chemicals have been buried or released underground, and slowly seep up into structures built over them, affecting occupants of buildings.

Google’s buildings are near a known underground pool of contaminants. The EPA has monitored the site since 2003 and detected the high levels of TCE in December 2012. Several companies once manufactured silicon chips near the site.
TCE is usually used as an industrial solvent.

Google says employee health was never at risk and building improvements will prevent any future episode. But nonetheless health professionals and Google employees need to understand:

  • No chemical exposure is minor. Repeated low-level exposures, such as in a “sick building,” or a one-time, high-level exposure such as at a chemical spill or pesticide accident, can initiate TILT. For many individuals who have been “TILTed,” life is no longer the same. It affects their health, their ability to work or go to school, and other activities in perpetuity. Thereafter even low levels of common cleaning chemicals, fragrances, gasoline at a gas station, diesel exhaust, outgassing from new furnishings, carpet, and other products can trigger symptoms that range from mild to disabling.
  • Doctors need help in diagnosing chemical illnesses. Most physicians don’t understand chemical intolerance or test patients for it. A medical study in July 2012 found that chemical intolerance contributes to the illnesses of 1 in 5 patients but their condition seldom is diagnosed. Patients and physicians need to know about and use a widely accepted screening instrument for multiple chemical intolerance that’s called “QEESI,” short for Quick Environmental Exposure and Sensitivity Inventory. Download it here.

Amid the Tragedy, a Lesson for Health Professionals

The shooting tragedy at Sandy Hook Elementary School in Newtown, Conn., underscores the urgency for mental health practitioners to understand the TILT iceberg. The iceberg is a graphical depiction of the risks for people with Toxicant-induced Loss of Tolerance.

Practitioners need to take a proper history of their patients and think about the role of petrochemicals/drug exposures in violence. These hair-trigger anger reactions were not uncommon among chemically-exposed Gulf War veterans I saw as a consultant for the Veterans Administration. The veterans had become chemically intolerant and were so afraid they might harm their own families that they gave their guns to friends for safe-keeping.

Dietary intolerances are one of the main consequences of TILT, based upon our extensive studies of people who became ill following exposure to pesticides, solvents, substances used in remodeling, and Gulf War chemicals.

Prisons are controlled environments in which it’s been shown that reducing exposures, even to such benign chemical substances as sugar, can reduce violence.

Read an in-depth exploration in the book I co-authored,
Chemical Exposures: Low Levels and High Stakes.

The Sandy Hook shootings, like those earlier in Oregon, Colorado and elsewhere, appear random but individuals whose limbic systems have been sensitized by exposures and then are triggered by cleaning agents, foods or medications they no longer can tolerate are more likely to pick up a gun and use it.

Using the QEESI, or Quick Environmental Exposure and Sensitivity Inventory, with patients and reducing exposures (pesticides, solvents, etc.) could help. TILT may be responsible for a small subset or a large number of cases, but almost no mental health professionals are aware of this illness dynamic/new paradigm and they must not miss the diagnosis. Too many lives are at stake.

Are You a Modern Canary?

Photo of Laura MacCleery

Describing preparations for Hurricane Sandy, guest blogger Laura MacCleery gives a humorous example of the old adage about how “no good deed goes unpunished.” Laura is a lawyer, mother and self-described “squeaky wheel in search of a spoke.” She writes commentary at Laura’s Rules.

By Laura MacCleery

When I recently filled out a helpful questionnaire on chemical intolerance, the Quick Environmental Exposure and Sensitivity Inventory (QEESI), or “Queasy” as I like to call it among friends, a screw-shaped light bulb went off. (Compact fluorescent, of course.)

According to the results of this scientifically validated tool for measuring sensitivities to toxins in our environment, I am on the “high” end for both exposures and symptoms, meaning that I don’t tolerate smells like gasoline and off-gassing furniture well.

The survey powerfully showed why I obsess about such things, while other people may shrug them off. Seeing how I scored was important to me because it identified some common sources for the headaches and other discomfort I often experience following exposure to an unpleasant chemical-laden odor.

Most of the things on the list on the QEESI, which is a quick inventory, as the name implies, including bleach-based cleaning supplies or a “new car” smell, can make me feel a bit off, even in small doses. I still remember being newly pregnant in a Washington, D.C., wintertime and driving with the windows way down, the cold wind in my face, because freezing was far preferable to the vinyl smell emanating from my brand-new Nissan, especially given my bionic nose from the pregnancy!

But that sensitivity hasn’t gone away since I had my daughter, either. And I’m not the only one who’s bothered by the fragrances crowding our environment. A recent article in a UK newspaper notes that: “One leading expert suggests nearly a third of people suffer adverse health effects from being exposed to scents.”

The article explains:

“Allergies are on the increase, and the amount of perfumed products is also on the rise,” says Dr. Susannah Baron, consultant dermatologist at Kent & Canterbury hospital, and BMI Chaucer Hospital. “Fragrance allergy can show up as contact dermatitis in the site a perfumed product is applied, or as a flare-up of existing eczema. It can be a real problem.” … Often it may not be immediately obvious that you’ve developed a fragrance allergy, says Dr. Baron. “You don’t react immediately; the body notes that it does not like the chemical and develops ‘memory cells,’ which cause inflammation when the body is next exposed to this chemical. Gradually, as you are exposed more and more, the body ramps up its reaction, until it becomes more noticeable to you.”

As the designer of the QEESI tool, Dr. Claudia Miller, an immunologist/allergist, explains based on her many years of research, that biological response is to the chemicals being used to produce the fragrances. Her pioneering work shows that exposures to chemicals of all kinds – not just the smelly ones – can and do trigger a loss of tolerance in some people, causing ill health.

And the simplest things can lead to new exposures, such as our recent utterly ridiculous adventures with installing a generator for our home. We often lose power, and so the prospect of Hurricane Sandy barreling down on us caused a run to the store and triggered a panicky purchase of a generator to help see us through.

Turned out we didn’t need to use it, and instead bought ourselves a world of trouble. In fact, what I didn’t know about it can be counted on all my fingers and toes in the dark, including the substantial extra costs of having an electrician hook it up properly, and the excruciating task of filling tanks up with gasoline, poised over the wafting fumes to ensure that I didn’t overfill the tanks and spill it all on my shoes.

To complete the misadventure, a small amount of gasoline did spill inside my car, rendering it nastily smelly once more. To get the odor out, I tried everything – wiping it down with baby oil, auto cleaners, and baking soda. Repeatedly.

Then I finally took it to a detail shop, and paid them a small fortune to use completely toxic cleaning supplies on the floor and seats. The smell has diminished, but it’s not gone, and it’s mingling with all the cleaners for a soupier feel. I still drive with the windows open and leave them all cracked while parked, at least when there’s no rain coming.

Contrary to what most folks think when they imagine what we are doing to “the environment,” indoor air is far more polluted than that outdoors. Given the number of people whose symptoms have been identified by the QEESI, I don’t think I’m alone in thinking that something is very wrong when the places we build – to live in, no less – are not particularly safe or comfortable for at least some living things.

So if you are like me, and these kinds of odors bother you as you go about your day-to-day, you may want to take the QEESI and see how and why they may be impacting you. And to learn what may be “masking” their effects, so that you don’t know where the headaches are coming from.

Even more pointedly, suppose you go on vacation and get a break from these exposures and feel suddenly better, which happened to a friend of mine, then you may want to start clearing your house of odoriferous chemicals and plastics to see if it makes a difference. It certainly did for her.

On the other hand, if you’re one of the lucky ones who feels just fine in this man-made world of olfactory offenders, well, then, you can snicker at us anti-chemical folk if you’d like to. But you may also want to think about whether those of us with the higher QEESI scores – and the concomitant fascination with “greening” our homes – are actually canaries in a mineshaft.

Tweet, tweet, I say, a bit sadly.

And because I’m a modern bird: Retweet? Are you a canary too?

Back to School May Spell Health Problems for Your Child

No time of year brings more changes for children and teens than the start of a new school year. They return to different classrooms and often entirely new schools. Classrooms may have been remodeled, repainted, recarpeted, or treated with pesticides.

These changes can affect children regardless of grade level — pre-kindergarten, grade school, high school and college. Amid the back-to-school excitement, some students wind up feeling sick, listless or distracted, unlike last year. And parents wonder why, and what they can do. Sometimes the school environment is the cause.

Understanding why your child feels bad is especially challenging with children who cannot tell you what may be going on at school. What to do? How about visiting the school yourself?

I have a personal example: My son was returning to fifth grade and for the first time was struggling in math and other subjects. When I visited his school on parents’ night, I was struck by the strong odor of new rubber-backed carpet that had been glued down throughout the school. The classrooms formerly had wood floors and windows that opened to let in fresh air. The goal of the remodeling was to reduce noise. But my son and many other children and teachers became ill when they returned to school after summer break. The most subtle and common symptom was difficulty concentrating and remembering, but headaches, fatigue and worsening asthma also occurred — all as a result of well-intentioned remodeling over the summer!

How can parents detect the early signs of TILT, or Toxicant-induced Loss of Tolerance? TILT is a process that starts with a chemical exposure, such as in a “sick building,” after remodeling at school or home, or from cleaning chemicals or a pesticide exposure. It can cause susceptible individuals to lose their tolerance for everyday substances that never bothered them before, frequently including foods! Intolerances people develop are not usual “allergies.” See a detailed explanation of the differences.

Here’s a 7-point guide for recognizing the early signs of TILT:

  1. Over long weekends or during vacations away from school does your son or daughter feel better? Do they feel better just being outdoors? Pay particular attention to symptoms that occur when your child returns to school after a vacation. Do headaches, migraines, irritability, or other symptoms such as tics or stomach problems diminish when they are away from the school? Do the symptoms return “with a vengeance” once they return to classes? This is a useful “experiment”: avoiding the school for a week or so while on vacation, and then returning, paying close attention to symptoms. Re-exposure can evoke a “sharp response,” making it clearer which symptoms are related to a particular environment. Sometimes the return to school after the summer provides the clearest evidence — keep a symptom log on a wall calendar.
  2. Did your child’s health problem(s) begin with a flu-like illness and fatigue that did not go away?
  3. Does your child, and do other children from the school, report symptoms involving multiple organ systems, with a predominance of neurological symptoms such as fatigue, memory and concentration difficulties, sudden overwhelming sleepiness, headaches, confusion, unsteadiness/clumsiness, irritability or depression? But also, digestive difficulties, skin rashes, muscle weakness, sinus and nasal symptoms, recurrent infections, breathing problems (e.g. asthma) etc., that have become more frequent since school began. School nurses often have a handle on this and can be helpful if approached in a non-confrontational way.
  4. Since your child returned to school, has she had any adverse or unusual reactions to medications, such as antihistamine/decongestants, antibiotics, antidepressants, injections, or general or local anesthetics (for example, at the dentist’s office)? This is particularly significant if the drug was formerly well-tolerated. It is an example of “loss of tolerance” due to exposure.
  5. Does your child report feeling ill after meals, or that she is unable to tolerate foods she formerly enjoyed? Does your child have intense food cravings or feel ill if she misses a meal. Must she eat “on time” and or does she feel ill if a meal is missed?  Does your child raid the refrigerator at night, e.g., for ice cream or other foods, drink large quantities of milk or sodas (corn sugar), eat chocolate or other candy, cookies, bread, popcorn/corn chips, or other foods “addictively.” Does she feel terrible the next morning from her food addictants?
  6. Does your child use caffeine? What happens if she doesn’t get her usual amount each day?  Is she now using increased amounts of caffeine or, alternatively, avoiding caffeine because it bothers her? Overuse and avoidance can both be signs of caffeine intolerance. Avoidance leads to withdrawal symptoms. As with drugs, overuse may help postpone/overcome caffeine and food withdrawal.
  7. Is your child hypersensitive to: 1) noise (crowds yelling at sports events, vacuum cleaner); 2) bright light (closes blinds, uses sunglasses indoors); 3) vibration/touch as when someone bumps into their bed; or 4) certain odors.

Be sure to notice when symptoms occur and whether any particular exposures/odors may have preceded them. For example, do felt-tip markers, engine exhaust, fragrances, odorous cleaning products such as bleach, nail polish/remover, hair spray, and phenolic disinfectants (those whose names end in “-sol”) now make your child feel ill or trigger symptoms? Use EPA’s “Tools for Schools” to work with your school district to choose the least toxic cleaning and pest control approaches, e.g., integrated pest management where least toxic approaches are used first. Another excellent resource is the Healthy Schools Network website.

My tip to parents: Record symptoms on a calendar, along with where your child was that day, foods they ate, and symptoms such as dark eye circles (so-called “raccoon eyes”), headaches, nasal stuffiness or runny nose, fatigue, stomach ache etc., rating symptom severity on a 0-10 scale, with “5″ being moderate symptoms and “10″ severe or disabling. Seizures would be “10.”

For more information and a validated, diagnostic questionnaire on TILT, see the Quick Environmental Exposure and Sensitivity Inventory, or QEESI, that can be downloaded without charge from my website. Fill it out, score it, and take it to your doctor along with your calendar/graph of symptoms over time.

Autism and Chemical Intolerance: Is There a Link?

Cases of childhood autism are up sharply, and there’s reason to wonder whether the number of cases is much higher than we suspect.

The Centers for Disease Control and Prevention reported in March that autism cases in the United States had increased 78 percent since 2002. That’s 1 in 88 U.S. children (1 in 54 boys and one in 252 girls), or about 1.1 percent of children.

A few weeks later, in May, a new study from South Korea reported that 2.3 percent of children there have autism. That’s twice the prevalence that the CDC has reported in the United States. Why such a difference?

The Korean study, lead by Yale and George Washington universities, counted cases differently. Researchers rigorously assessed individual children ages 7 to 12 in a community of 488,000 to identify known cases. In contrast, the CDC relied upon records of existing cases kept by health care and special education agencies.

Regardless of measuring methodologies, autism spectrum disorder now affects more children than diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.

Why is autism on the rise? Better diagnosis alone can’t account for it.

The most cogent scientific explanation is also my greatest concern: chemical exposures. Chemically susceptible mothers who do not know they are susceptible and who therefore do not avoid exposures are at particular risk. They are more likely to have babies who share their susceptibility genes, and be raised in homes and environments in which exposures are relatively high compared to earlier generations. It’s a case where genetics loads the gun and the environment pulls the trigger.

Women who know they are chemically intolerant will work hard to help their families avoid things like pesticides, solvents, combustion products and other exposures that could lead to neurodevelopmental difficulties. This is because they are personally more aware of the adverse effects of these exposures. They will want to protect their children. However, women who are highly “masked” are less likely to avoid exposures. Although they may have multiple intolerances to foods, everyday chemicals and medications, they may be unable to tell which exposures are causing symptoms because triggering exposures occur throughout the day and their symptoms overlap in time.

The use of petroleum-based chemicals has risen dramatically in recent decades. These substances can seriously affect the health of susceptible people. With intense or long-term chemical exposures, these individuals can acquire Toxicant-induced Loss of Tolerance, or TILT. The problem is, currently, it is not always possible to know beforehand who is susceptible—before the parents build a new home or remodel their existing home for a new baby, hire an exterminator to keep bugs away and install air fresheners throughout the house so the home smells nice for baby.

New research suggests the children of chemically intolerant individuals inherit some of their parents’ same susceptibility to developing life-changing chemical, drug and food intolerances if sufficient exposure occurs (e.g., to pesticides, chemicals associated with new construction). The person develops TILT, or as some affected persons refer to the process, they become “TILTed.”

Most but not all chemical exposures are easy to identify by odor. Complex mixtures of chemicals emitted from everyday products used for home construction and furnishings, for example volatile organic chemicals outgassing from new carpet, adhesives, fragrances, etc., can be trapped inside our energy efficient, tightly constructed homes, schools and workplaces. These exposures can be hard to avoid and because of “olfactory adaptation,” our ability to smell complex low-level mixtures is quickly lost—within minutes of entering a home. Think of homes you may have visited while touring builders’ open houses: in your first few breaths you can smell the air, but after several breaths your nose adapts and you are no longer aware. A useful exercise can be to spend several days away from a suspect environment and then return, noting any odors that are apparent within the first breath or two. Or ask neighbors or friends what your house smells like — e.g ., mothballs, new carpet, a fragrance, natural gas or a mixture of substances?

Many of the same environmental exposures that initiate TILT can also interfere with neurodevelopment in a fetus. The harm can start as early as the first month of pregnancy. That’s the stage when the neural tube forms but before most mothers know they are is pregnant.

There are important relationships between autism, genes and exposures. Humans have different thresholds for becoming chemically susceptible. These differences are normal and not defects. These differences are not new. What is new? Our exposures.

Since World War II, the petrochemical era has ushered in countless new chemical exposures. Many of these have found their way into our building interiors where Americans spend on average 90 percent of their day. A mother and infant may spend even more time at home. Not only do indoor exposures vary from house to house and workplace to workplace, but there can be as much as a 10,000-fold difference between individuals in our ability to detoxify and eliminate certain substances from our bodies.

The rise in autism spectrum disorders seems to follow the rise in petrochemical usage, and arouses enough suspicion to justify immediate research.

The need for research is great, and future studies need to focus on potential environmental causes and especially the indoor environment—an area that falls between the cracks in terms of government research funding. There is a saying: “There are no genetic epidemics.” If a condition has become as prevalent as autism, then research must examine potential environmental contributors — and quickly. Although genes play a role in terms of individual susceptibility to exposures, it is the exposures that are the problem, not our genes! In March, Mark Roithmayr, president of the influential organization Autism Speaks, which helped fund the South Korean study, called for a comprehensive national strategy to address the autism epidemic. Among other things, he cited a need to:

  • Fund more basic science uncovering the genetic underpinnings of autism.
  • Fund more environmental research detecting the causes of autism.
  • Accelerate the funding and development of effective medicines and treatments.

I agree with his statement. There are many different types of autism. Autism is an umbrella diagnosis, one that has many potential root causes. However, the “chemical connection” seems be one of the most promising paths toward an understanding of autism spectrum disorder.

Doctors Overlook Chemical Illnesses, Study Finds

Chemical intolerance contributes to the illnesses of 1 in 5 patients but the condition seldom figures in their diagnosis, according to clinical research published July 9 in the journal Annals of Family Medicine.

(Note: I was a co-author of the paper, which is available from the Annals of Family Medicine website. The study struck a national nerve, and it has been reported widely in the news media, including highly-read Medscape.com, which ran an excellent account. You’ll need a free Medscape login and password to view it. Other accounts are published at Science Daily and Fox News.)

Here’s a summary sent to the media:

Chemical intolerance contributes to the illnesses of 1 in 5 patients but the condition seldom figures in their diagnosis, according to clinical research published July 9 in the journal Annals of Family Medicine.

Clinical tools are available to identify chemical intolerance but health care practitioners may not be using them, said lead author Dr. David Katerndahl, professor of family and community medicine at the University of Texas Health Science Center at San Antonio.

The study’s authors said physicians need to know how chemical intolerance affects certain people and understand that conventional therapies can be ineffective. Some patients would improve by avoiding certain chemicals, foods and even medical prescriptions, the authors said.

Patients with chemical intolerance go to the doctor more than others, are prone to having multi-system symptoms and are more apt to have to quit their job due to physical impairment, the authors said.

The study involved 400 patients who gave personal health information while waiting to be seen at primary care clinics in San Antonio. The researchers asked the patients to respond to 90 questions about their illnesses, mental health and ability to function.

In the end, the authors said, 20.3 percent of the patients questioned met the scientific criteria for chemical intolerance.

Researchers surveyed patients with chronic conditions such as allergies, asthma, diabetes and heart disease. They excluded patients who were at the clinics for acute conditions such as earaches, flu or bone fractures.

The origins of chemical intolerance have been the subject of much speculation, the authors acknowledge, but the condition is also understudied. People with chemical intolerance, or “CI,” are highly sensitive to common substances such as cleaning products, tobacco smoke, fragrances, pesticides, new carpet and auto exhaust.

“Apart from the debate over causality, the fact that so many patients meet the criteria for chemical intolerance holds particular relevance for primary care providers,” said Dr. Katerndahl.

Chemically intolerant individuals often have symptoms that affect multiple organ systems simultaneously, especially the nervous system. Symptoms commonly include fatigue, changes in mood, difficulty thinking and digestive problems.

Study co-authors are Dr. Claudia S. Miller, professor in environmental and occupational medicine, vice chair of family and community medicine, and director of the South Texas Environmental Education and Research (STEER) Program, among her roles; Dr. Raymond F. Palmer, associate professor of family and community medicine at the University of Texas Health Science Center at San Antonio; and Dr. Iris R. Bell, professor emeritus in the Department of Family and Community Medicine at the University of Arizona College of Medicine and research professor in the College of Nursing at the University of Arizona.

An added comment: Healthcare professionals as well as the public can assess chemical, food, drug and other intolerances using the QEESI, the Quick Environmental Exposure and Sensitivity Inventory, which I developed. It is available free for download.

Groundbreaking National Academy of Sciences Workshop on Individual Susceptibility

I presented April 18 at the National Academy of Sciences Workshop “Biological Factors that Underlie Individual Susceptibility to Environmental Stressors and Their Implications for Decision-Making.”

The proceedings are available by recorded webcast so you can view and listen to the speakers. View the webcast at:

http://www.tvworldwide.com/events/nrc/120418/
(Supply your email adress to log in.)

The title of my presentation was “Human Variability in Chemical Susceptibility (Intolerance/Sensitivity): Research Findings to Date and Their Implications for Future Study Design.” I’ve posted my presentation for your review.

I was asked to describe our findings from the QEESI, the Quick Environmental Exposure and Sensitivity Inventory, and to discuss the use of EMUs, environmentally-controlled medical units, for research. Here is a synopsis:

“The QEESI is a validated research tool widely used to identify and characterize chemically intolerant individuals and groups. Results from these studies provide evidence for broad endogenous variability in susceptibility and point to the complex nature of susceptibility in humans, with susceptible persons generally reporting adverse responses to chemically diverse substances, including foods and drugs. Future investigations to assess human variability that is ‘endogenous or biological’ will benefit from the use of EMUs. Such studies will enable us to correlate symptoms and clinical measures (such as pulmonary function and EEG measures) with changes in the ‘-omics’ in real time at key points, i.e., when subjects enter the EMU, once they have achieved a clean baseline, and pre- and post- low level challenges.”

The QEESI is available free for download.

Details about the workshop are at:
http://nas-sites.org/emergingscience/workshops/individual-variability/

Medical Implants: Initiators of TILT?

The Pulitzer Prize-winning publication ProPublica drew attention in May to the lack of centralized data on implanted medical devices. Where can patients find out when a pacemaker, breast implant or artificial hip, for example, goes bad?

Not from the U.S. Food and Drug Administration, as ProPublica’s story describes. Prescription drugs have unique codes the government can use to track problems. But implanted devices? No such luck.

And there’s an unexplored dimension to the implant question: Implants are “xenobiotics,” petrochemical products that pose particular concern for people who may be more chemically susceptible.

I testified before the FDA in 2005 about the dangers of implants, and cited evidence from my own research.

Over a decade ago, in 1999, along with co-author Thomas J. Prihoda, PhD, I reported on a group of patients who received implants and subsequently developed chronic health problems and chemical intolerances that they had never experienced before.

Although inserting implants certainly differs from inhaled exposures to pesticides or air contaminants in a sick building, for susceptible individuals it seems like the body doesn’t care whether the exposure is exogenous (like air pollutants) or endogenous, like an implant. The consequences can be similar — chronic, multi-system symptoms and intolerances for foods, alcoholic beverages, caffeine, everyday chemicals like cleaning agents, engine exhaust, fragrances, and even medications like antibiotics or antidepressants. Once people become ill, not just the implants, but everyday exposures like these can trigger symptoms and perpetuate illness.

We obtained exposure histories from patients who became ill following an “exposure event” — ill veterans from the first Gulf War in Iraq, people exposed to pesticides or remodeling chemicals, and patients who had received an implanted medical device. The groups shared illnesses marked by multiple symptoms and new intolerances — the hallmark symptom of the illness process Toxicant-induced Loss of Tolerance (TILT).

Patients with implants reported symptoms affecting multiple organ systems which frequently involved cognitive and mood difficulties.

The implant group included 87 individuals, 97 percent women, mean age of 50. Most had received breast implants or temporomandibular joint (TMJ or jaw) implants. Two-thirds said their device had ruptured. Nearly all of those reporting difficulties said their illnesses had affected their ability to work. Their most pervasive symptoms involved muscle and joint problems.

TILT is often overlooked in implant patients when doctors don’t recognize it. There is a saying in medicine: You can’t make the diagnosis you don’t think of. And many doctors don’t know that multiple symptoms and intolerances point to TILT. In medical school, we are often taught that the more symptoms a patient reports, the less likely there is anything to them — in other words, the problem is psychogenic. While many patients suffer from psychological symptoms such as depression, anxiety and cognitive difficulties, even confusion, it is important to remember that psychological symptoms are not necessarily psychogenic. Many physical illnesses can cause similar symptoms, for example, autoimmune diseases, multiple sclerosis and Lou Gehrig’s disease (ALS).

As I wrote in the 1999 study, “The fact patients reported such diverse symptoms led some physicians to conclude that none of them rises to the level of a medically identifiable syndrome. Nor are these conditions explained by current, generally accepted mechanisms for disease.”

I developed the QEESI, or Quick Environmental Exposure and Sensitivity Inventory, several years ago to help doctors and patients make sense of multiple symptoms and measure the potential for chemical intolerance.

Persons who score high on the QEESI, a validated and published screening instrument, may be at greater risk if they receive an implant or have other exposures, e.g., anesthetics, drugs, pesticides, remodeling of their home or workplace, etc. To determine whether you may be at increased risk of developing TILT, you can take the QEESI to gauge your own susceptibility or to document changes in your symptoms and intolerances as a consequence of an implant or its removal. Many individuals do report improvement in symptoms once their implants are removed.

As for the FDA, the regulatory agency has done poorly in its role of gathering scientific data about the safety of implants. Dr. Diana Zuckerman, president of the National Research Center for Women and Families, a research and education group, told an expert panel of the FDA in 2011 that some breast implant manufacturers had failed to carry out the FDA’s own recommended studies of post-implant patients. One of the FDA’s chief scientists, Dr. William Maisel, later acknowledged shortcomings when questioned by the New York Times.

Commenting on breast implants in her blog, Dr. Zuckerman added, “Silicone implants are considered biocompatible, which means that most patients won’t have an allergic or autoimmune response. But, that doesn’t mean that nobody will. In fact, the implant companies intentionally excluded women with autoimmune histories from their studies because of concern that the women would have medical complications that would jeopardize getting FDA approval.”

When I’ve testified before the FDA on the results of our study, I’ve been concerned with the fact that parents may purchase implants for their daughters for their “Sweet 16” or high school graduation. Adverse events include scarring as well as chemical intolerances in a subset of individuals. The problem is, that before an implant, there is currently no way of knowing who may be more susceptible to developing health problems or disfigurement. The QEESI might at least make women more aware if they are susceptible to petrochemical exposures, including implants. I’ve heard of women who already had been diagnosed with an autoimmune disease going to see a doctor to get implants. No doctor should agree to place breasts implants in women with this history.

Also, I’m aware of young women borrowing money to get an implant. However, if they become ill, insurers may not pay to have them removed. So it’s not just the cost of the implant, but the unplanned costs if removal becomes necessary.

LEED: A Set-up for Sick Buildings?

Is there a way to make “green” buildings as friendly to people as they are to the environment?

I had the opportunity to discuss indoor air quality and chemical susceptibility with some of the nation’s leading architects and building technologists at a recent conference about building standards. I was one of 13 guest speakers at the conference hosted by the School of Architecture at the University of Texas in Austin.

Indoor air has a profound effect on people’s health, and my goal was to persuade the group that poor quality air makes some people sick. My message was simple: If you protect the most vulnerable people, you will protect everyone.

I suggested adding a new level to the coveted LEED building certification. The new certification level would recognize buildings that assure excellent indoor air quality.

Certification under LEED, short for “Leadership in Energy and Environmental Design,” reflects a rating system for the design, construction and operation of green buildings. Developed by the U.S. Green Building Council, it is intended to provide building owners and operators with a framework for identifying and implementing practical and measurable green building design, construction, operations and maintenance solutions. Buildings receive LEED certification based on five categories of construction quality. I proposed a sixth: indoor air quality. A building can be LEED certified and yet have indoor air exposures that pose major health problems for a building’s most susceptible occupants, such as the chemically intolerant, those with asthma, pregnant women, etc.

Americans spend 90 percent of their day indoors so architects and builders bear a major responsibility for the quality of indoor air.

Who is most vulnerable? Children, pregnant women, and more susceptible adults (people with asthma, allergies, or chemical intolerance). At any given time, of 100 people, 3 are pregnant or will become pregnant within a year, 7 are children under the age of 5 (another 17 are still under the age of 18 and the brain continues to develop into the early 20s!), 7 have asthma, 20 have
allergies, and 15 are chemically intolerant.

LEED certification does not protect the most vulnerable building occupants from indoor air contaminants such as chemicals, particles, allergens, and microbes. Although indoor environmental quality requirements are part of LEED certification and builders and owners can earn points by taking additional measures that can improve indoor air quality, the levels of certification such as “silver,”"gold,” or “platinum” are insufficient to protect the most vulnerable building occupants. A new designation, perhaps “LEED Diamond,” should be introduced with mandatory criteria to ensure excellent indoor air and protect all building occupants.

My presentation is available in .pdf and PowerPoint.

Leaders Issue a Long Overdue Call for Research into Chemical Intolerance

Scientists, healthcare professionals and especially people with chemical intolerance have achieved a victory that took years to win. In a nutshell: High-level U.S. policymakers now say chemical intolerance needs serious investigation.

The recently concluded “National Conversation on Public Health and Chemical Exposures,” sponsored by several government agencies, issued a detailed statement in October 2011 that summed up two years of deliberation among hundreds of experts. The statement, in brief, calls for intensified work to understand chemicals and their health effects.

I think the statement will influence health policy and promote new research and clinical inquiry. Progress in the science, diagnosis and treatment of chemically-induced illness has been painfully slow. I’m excited to see this new development.

The National Conversation, in its final statement, urged intensified study of:

  • Health effects of chemicals, including low-dose, multiple and cumulative exposures
  • Individual susceptibility, including the interplay between genes and environment
  • Community vulnerability and disproportionate effects from past exposures
  • Effectiveness of interventions to protect public health

To me, one of the most important recommendations called for human studies using environmentally controlled research units. It said: “Studies of variation in susceptibility as manifested by chemical sensitivity/intolerance, including clinical studies conducted in facilities adequate for this purpose, are needed.”

This recommendation for research facilities first appeared in a report commissioned by the State of New Jersey that I co-authored in 1989 with Nicholas A. Ashford, Ph.D., J.D., professor at Massachusetts Institute of Technology, as well as in subsequent editions of our book Chemical Exposures: Low Levels and High Stakes.

Here is an excerpt from recommendations in the National Conversation’s report “Chapter 3: Achieve a More Complete Scientific Understanding of Chemicals and Their Health Effects”:

“Recommendation 3.5: Improve understanding of individual susceptibility to chemical exposures.”

“Those seeking to protect the public from the adverse effects of chemical exposures need a better understanding of variations in individual susceptibility to help prioritize prevention and treatment efforts. Some individuals in certain groups (e.g., developing fetuses, children, pregnant women, the elderly, disabled persons, persons with chronic diseases, persons with previous heightened sensitivity to chemical exposures) exhibit unique susceptibility to chemical exposures. Some of this variability in susceptibility may be related to genetic variation, acquired epigenetic changes, health effects from previous exposures, or nonchemical stressors. To improve the understanding of these variations, funding agencies should continue to support research into mechanisms of variation in individual susceptibility and the role of such variations in the observed burden of environmentally related disease. Studies of variation in susceptibility as manifested by chemical sensitivity/intolerance, including clinical studies conducted in facilities adequate for this purpose, are needed. Population-based studies of exposed groups may yield additional insights.”

“Further, the federal government should support an existing working group or convene an interdisciplinary group of scientists and clinicians from federal agencies, NGOs/public interest groups, industry, academic institutions, and representatives of affected patient communities to develop a research agenda on chemical sensitivity/intolerance.”

The National Conversation was a two-year collaborative process that produced an action agenda in June 2011 on new ways to protect the public from harmful chemical exposures. In October 2011, the leadership issued its final recommendations at an implementation strategy session in Washington, D.C., hosted by the American Public Health Association (APHA).

I chaired the National Conversation’s subgroup on Individual Susceptibility, and served as a member of the larger Scientific Understanding Work Group, one of six working groups assigned to various aspects of chemical exposure. The work group issued a full-text action agenda.

As part of their mission to advance the public’s health, the Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry supported the National Conversation. Dozens of government agency, nonprofit and industry experts and thousands of members of the public were involved in developing the recommendations.

Children with Autism and Their Parents Share Chemical Intolerances

Medical researchers are finding that children with autism and their parents suffer in some of the same ways when they encounter certain chemicals in everyday products.

Recently, at the invitation of the Autism Society of America, I presented a national webinar describing how children with autism and their parents often share certain intolerances, and may react in similar ways. Why? I think it’s a case where “Genetics loads the gun, and the environment pulls the trigger.”

We know, for example, that in adults certain acute or chronic chemical exposures sometimes can initiate a process that has come to be known as “Toxicant-induced Loss of Tolerance,” or TILT. TILT may develop after a workplace exposure or remodeling of a home or exposure to petrochemicals or combustion products from a fire. Thereafter, everyday exposures to common chemicals, foods, medications, and even caffeine, can trigger cognitive and mood difficulties, as well as a host of baffling symptoms that can affect the nervous system, digestive tract, airways, and skin.

Notably, many of the same environmental exposures, e.g., certain pesticides, that initiate TILT in adults can also interfere with neurodevelopment in a fetus, starting as early as the first month of pregnancy when the neural tube forms and before the mother even knows she is pregnant!

And, as for chemically intolerant adults, we should make every effort to prevent suspected initiating exposures as well as minimize exposures that can continue to trigger autistic behaviors and other symptoms throughout the lifespan. This also means that continued avoidance of even low-level exposure triggers may be important for treating children and adults with autism.

These differences in susceptibility to environmental chemical exposures, which may predispose to TILT in adults and autism in children, are the consequence of normal human genetic diversity — a good thing! My concern, as we learn more about the important relationships between autism, genes and exposures, is that differences in our genetic susceptibility not be viewed as a defects, but rather normal individual differences. These differences are not new. What is new are our exposures. Since World War II, the petrochemical era has ushered in myriad chemical exposures, exposures unprecedented in human history. There can be as much as a 10,000-fold difference, from person to person, in our ability to detoxify and eliminate substances from our bodies. Currently we are unable predict which exposures can cause TILT or autism in which persons.

Other shared features of autism and chemical intolerance include food cravings (mimicking addiction) and intolerances including gluten (wheat) and milk. From our own studies, mothers of children with autism, compared to mothers of “neurotypical children’” were much more likely to report that common chemical exposures make them sick. These included household cleaners, fragrances and pesticides. We used the validated “Quick Environmental Exposure and Sensitivity Inventory” or QEESI, questionnaire to gauge chemical, food and other environmental intolerances in the mothers. You too can use the QEESI questionnaire to gauge sensitivities.

The underlying causes for autism and the reasons why it now affects a staggering 1 in 110 babies born in the United States — a national epidemic according to the Centers for Disease Control and Prevention (CDC) — continue to elude the medical and scientific communities. There are many clues, and theories. The webinar I presented on behalf of the Autism Society of America, which is available to you free of charge, focuses on the striking and often overlooked parallels between autism and chemical intolerance. The increased use of petrochemically based household products and recent emphasis on greener, more energy efficient homes with little fresh air to dilute contaminants in the United States parallels the rise in autism over the past few decades. Globally, autism has been on the rise in every industrialized nation.

During medical school, my colleagues and I learned that children are not just little adults! There are obvious size and many metabolic differences between children and adults. At the same time, children with autism and chemically intolerant adults are strikingly similar in important ways: They share exposures to petrochemicals, indoor air pollutants and pesticides, and both experience chemical and food intolerances. A crucial difference in the case of autism is timing: Exposures that occur during pregnancy or early childhood have the potential to alter neurodevelopment. One tool that is urgently needed in medicine is an Environmental Medical Unit, or EMU, which would allow physicians and families to determine whether and to what extent autism might be reversible if chemical and food triggers could be avoided systematically for a few weeks. Here is a paper I wrote about EMUs.

Here is the webinar presentation to the Autism Society of America.

To follow the proceedings, you will need to install the Cisco Webex browser software. You will be prompted at the website. Adding the software only takes a few seconds.