by Jody Berger
•Are you willing to seek second, third and fourth opinions, if necessary?
•Is there a dollar amount over which you would pay no more for treatment?
•What factors will make you feel most comfortable with the doctor and most confident in her proposed treatment plan?
•Do you care if your doctor likes you or asks for your input or opinion? Do you need to like your doctor?
•What factors matter to you in terms of a finding the right doctor? What kind of qualifications, skills or background are you looking for in a doctor? How will those help you?
Questions to Ask Your Doctor
•How much time do we have together?
•Have you looked at my medical history, and are there any parts that seem unclear or questions I can answer for you?
•How do you like to work with your patients?
•Among your peers or colleagues, are you considered aggressive or conservative in the way you treat illness?
•Are you considered quick to order tests and treatments? Or more cautious?
•If I have questions, where do I go and whom do I ask for answers? How quickly can I expect an answer to my questions?
•It’s important that I understand the reason for any test, treatment or medication. Will you work with me to make sure I understand?
•Could you tell me how you think about diet, exercise and other lifestyle choices as factors in health or healing? And where do pharmaceuticals fit into that picture?
•Are you a consultant or on the payroll of any pharmaceutical or medical equipment companies?
Then tell your doctor what you learned when you asked yourself the initial questions about your symptoms and desired outcomes, and ask if he or she can help you with that.
Questions to Ask before Any Medical Test
•What’s the reason for the test? What will it tell us? What will it rule out? And what will it rule in?
•How will the results of the test affect what we do next? (And if the answer is “not at all,” skip the test.)
•How would we proceed if I don’t want this test?
•What will it cost?
•Is this covered under my insurance plan and will having this test affect my premium?
•How long have you been using this test? What’s your experience with it?
•How reliable are the results of this test?
•Is there another way to find the same information? A less expensive, less invasive and equally accurate test to consider?
•What are the possible adverse reactions to this test? How common are they?
Questions to Ask Yourself after Any Medical Test
•Do you want to be alone when you hear the results? Or would you prefer to have someone with you?
•And what role would you like them to play? Notetaker? Skeptic? Silent emotional supporter?
Questions to Ask the Doctor after a Medical Test
•What are the results? What do they lead you to believe?
•What else could cause the same results?
•Are there other ways to read this test?
•Is there another way to test the accuracy of this result?
Questions about Drugs and Drug Treatments
•How long has this drug been on the market?
•What is it intended to do? How does it work?
•What are the common adverse effects? And the less common?
•How does it interact with other medications or supplements I’m taking?
•How frequently have you prescribed this medication? What results have you seen?
•What else do you know about this drug?
•What will it cost me?
•Are there alternatives, and what are the pros and cons of each?
The Goods on Gluten
Gluten is a protein found in wheat, barley, rye and other grains. It’s the glue that holds dough together, allows it to rise, hold its shape and have a somewhat chewy texture when baked. Gluten’s the thing that gives grief to anyone with celiac disease or a nonceliac gluten sensitivity. And surprisingly, it’s also the specific part of really common grains that no one can digest.
Dr. Michael Marsh began studying the stuff more than thirty years ago. A British physician, Marsh has published hundreds of peer-reviewed papers and three books on the topic, and he lends his name to the classification system that doctors uses to identify symptoms of gluten sensitivity—Marsh I, Marsh II and Marsh III. Another world-renowned specialist, Dr. Alessio Fasano, founded and runs the University of Maryland Center for Celiac Research. Both doctors say that humans cannot digest gluten—that none of us has the enzymes to get the job done.
For many people though, it’s not a problem. Gluten simply passes through and the body eliminates it without any drama.
The rest of us, however, are not so lucky. We have “gluten sensitivity,” which means that our immune system—the army of white blood cells and other warriors designed to protect us—gets called to action when it encounters gluten. The immune system determines friend from foe, self from other, and 70 percent of this decision making occurs in the digestive tract. This long line of coordinated body parts forms an assembly line that runs from the mouth through the esophagus, stomach and intestines. More so than the skin, which interacts with the environment, the digestive tract offers the greatest interface between self and other. As food (which starts as “other”) travels through the body, the digestive system works to break it down, and break it down further, while also sorting the molecules we need from the ones we don’t. Ideally, the molecules that fuel us become so small through the process that they can pass through the intestine and into the bloodstream and be accepted as “self.” Molecules we don’t need and can’t use are sent on their way.
This process goes off the rails for folks who can’t tolerate gluten. For me, and others like me—up to 30 percent of the population by some calculations—my genetic code sounds the alarm when gluten is involved. For people with celiac disease or nonceliac gluten sensitivity, when gluten comes into contact with the lining of the intestine, it triggers an inflammatory response. The body reacts as if an invader were trying to get in. It creates inflammation and if the inflammation is consistent—as it would be in someone who doesn’t know they’re sensitive and eats wheat at every meal—the intestinal wall becomes irritated and starts breaking down. The tiny gaps that sit between cells and are supposed to let only the smallest and most useful molecules pass out of the intestine and into the bloodstream become enlarged. All of sudden, the tiny gaps are large gaps, and the indigestible gluten particles slip through. Once gluten hitches a ride on the bloodstream, it can wreak havoc anywhere in the body. Wherever it goes, it can trigger an immune response. That response—the inflammation—could be in the joints, or on the skin, anywhere really—which is why gluten sensitivity can manifest in so many ways. Here are some of them:
•Aching joints
•Anemia
•Depression
•Eczema
•Exhaustion
•Headaches
•Irritability or mood swings
•Nutritional deficiencies
•Osteoporosis
•Peripheral neuropathy
•Skin rashes
•Weight loss or weight gain
It’s also why gluten sensitivity can be a tricky thing to diagnose. A patient with a skin condition may go to a dermatologist, who isn’t thinking about anything starting in the belly. Same for a neurologist presented with a patient with peripheral neuropathy (tingling in the fingertips or toes).
Speaking at a recent Gluten Summit, David Perlmutter, a neurologist and the author of Grain Brain, compared the problem to firefighters who focus on the wrong danger. “Gluten sensitivity is the fire,” Perlmutter said. “Drugs ca
n treat the smoke but gluten sensitivity is the fire.”
But here’s the good news: treatment is simple and the cure can be complete.
For those of us with a genetic disposition, gluten triggers an immune response that over time can cause intestinal permeability, or “leaky gut.” That permeability is what allows gluten to create inflammation beyond the digestive tract. Take away the trigger though, and there is no immune response, and eventually, the gut can heal. But you have to take away the trigger all the time. As long as gluten continues to irritate the lining of the intestine, that tissue cannot repair itself. (Picture a scab that keeps getting scratched. Or maybe a pair of lungs that belong to a smoker—as long as he keeps smoking, each cigarette adds insult to injury, and the lungs continue to suffer.)
Once gluten is eliminated from the diet, it may take a while, but the long-irritated tissue can settle down and repair itself, which in turn can relieve the symptoms. It may not be overnight and going to zero tolerance can be difficult, but in my experience, it’s worth it and worth knowing how to avoid gluten completely.
Beyond the obvious gluten-filled foods like cookies, cakes, breads and cereals, gluten creeps its way into almost everything in a box, bag or bottle in a grocery store. Few people toss flour into a salad dressing or tomato sauce when they’re cooking at home, but many store-bought bottles include gluten as a thickener. Gluten shows up as binders in salamis, fermenting agents in soy products and stabilizers in ice creams. It’s in chewing gum, chocolate bars and malted-milk balls. And packaging doesn’t list gluten in the ingredients because often gluten is inside another ingredient, not added independently. The only way to avoid it with packaged foods is to look for the big “GF” or “Gluten-Free” label. Luckily, in 2013, the Food and Drug Administration issued rules to standardize the labeling so that “GF” means the same thing everywhere.
Finding Out If Gluten Is a Problem for You
With unexplained symptoms or runaway inflammation, gluten could be the culprit. To find out for sure, doctors can suggest a blood test, a stool test, an intestinal biopsy or an elimination diet. Dr. Peter Green, director of the Celiac Disease Center at Columbia University and author of Celiac Disease: A Hidden Epidemic, says it this way, “Anyone who has symptoms brought on by the ingestion of gluten that are relieved by its removal from the diet can be called gluten intolerant.”
To find out if that’s the case, anyone can do an elimination diet. Some people worry about what they might lose in the process but Dr. Mark Hyman, a leading thinker in integrative medicine, puts those fears to rest this way: “Gluten is not an essential nutrient.”
In the beginning, however, going gluten-free may be daunting. For a while, I was so afraid of hidden gluten, I cooked every meal at home. That no longer seems necessary. Most restaurants, from high-end chefs like Thomas Keller to low-budget burrito joints like Chipotle, can accommodate a gluten-free diet. And most servers know what I mean when I say, “I have a gluten thing.”
To learn which restaurants can serve people with celiac disease or with gluten sensitivity, which recipes will work, and which grocery store brands are safe, there are plenty of resources online, including the following:
www.celiaccentral.org
www.celiac.com
www.csaceliacs.info
www.gluten.net
www.glutenfreeliving.com
www.glutenfreewatchdog.org
The Paleo diet is also gluten-free, so anything Paleo fits the bill.
There are apps for your phone, dozens of cookbooks and hundreds of blogs that will send you gluten-free recipes or coupons for GF goods, or both, every day. A gluten-free life may seem challenging, but it’s really not. And if gluten creates any chronic symptoms, going gluten-free beats the alternative.
And to find a doctor who can help you sort it out, integrated or functional medical specialists are one way to go. You can search for doctors near you at the following:
www.functionalmedicine.org
www.integrativemedicine.arizona.edu
All of us, I believe, can take charge of our health. It’s helpful to have a trained professional working with us and giving us information and options. And some of us have more obstacles in our path than others, but all of us can become informed, make our own choices and do the best we can for ourselves.
I wish all of you all your very best health!
Suggested Reading
Amen, Daniel G. Change Your Brain, Change Your Life: The Breakthrough Program for Conquering Anxiety, Depression, Obsessiveness, Anger, and Impulsiveness. New York: Times Books, 2000.
Boroch, Ann. Healing Multiple Sclerosis: Diet, Detox & Nutritional Makeover for Total Recovery. Los Angeles: Quintessential Healing, 2007.
Chopra, Deepak. Perfect Health. New York: Bantam, 1990.
Chodron, Pema. When Things Fall Apart: Heart Advice for Difficult Times. Boston: Shambhalam, 1997.
Cordain, Loren. The Paleo Diet: Lose Weight and Get Healthy by Eating the Food You Were Designed to Eat. New York: Wiley, 2002.
Doidge, Norman. The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science. New York: Viking, 2007.
Green, Peter H. R., and Rory Jones. Celiac Disease: A Hidden Epidemic. New York: HarperCollins, 2006.
Groopman, Jerome E. How Doctors Think. Boston: Houghton Mifflin, 2007.
Hyman, Mark. The UltraMind Solution: Fix Your Broken Brain by Healing Your Body First—The Simple Way to Defeat Depression, Overcome Anxiety and Sharpen Your Mind. New York: Scribner, 2008.
Kabat-Zinn, Jon. Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. New York: Dell, 1991.
Mate, Gabor. When the Body Says No: Understanding the Stress-Disease Connection. Hoboken, NJ: Wiley, 2003.
Moynihan, Ray, and Alan Cassels. Selling Sickness: How the World’s Biggest Pharmaceutical Companies Are Turning Us All into Patients. New York: Nation Books, 2005.
Mullin, Gerard E., and Kathie Madonna Swift. The Inside Tract: Your Good Gut Guide to Great Digestive Health. New York: Rodale, 2011.
Perlmutter, David, and Kristin Loberg. Grain Brain: The Surprising Truth about Wheat, Carbs, and Sugar—Your Brain’s Silent Killers. New York: Little, Brown, 2013.
Siegel, Daniel J. Mindsight: The New Science of Personal Transformation. New York: Bantam Books, 2010.
Wahls, Terry. The Wahls Protocol: How I Beat Progressive MS Using Paleo Principles and Functional Medicine. New York: Penguin, 2014.
Weil, Andrew. Health and Healing, rev. ed. Boston: Houghton Mifflin, 1988.
Welch, H. Gilbert, Lisa Schwartz, and Steve Woloshin. Overdiagnosed: Making People Sick in the Pursuit of Health. Boston: Beacon Press, 2011.
Acknowledgments
I am grateful for all my friends and family who held my hand, kept me laughing and loved me as I bounced from doctor to doctor. My dad, Dawn and Andrei Gorlitsky, Lisa Smith, Joe Mahoney, Jeremy Shaver, Mitra Tredway, Wayne Tisdale and of course, my constant companion, Riley, all cheered me on and cheered me up every step of the way.
Doctors and healers of all kinds taught me about healing and offered their wisdom and generosity in guiding me to a healthier version of me. I’m grateful for Anthony Fulker, Stuart Gross, Myron MacDonald, Philippe Souvestre, Nita Desai and Orianne Evans.
Thank you to Peter Trachtenberg, who was the first person to read any of my pages and who told me to keep going. I took his advice and found in Denver a truly supportive writing community at the Lighthouse Writers Workshop. I’m thankful for Lighthouse founders Andrea Dupree and Michael Henry, and all the great writers who read my work and gave me their feedback and encouragement: Paula Altschuler, Regina Drexler, Suzanne Finney, Jay Kenney, Betsy Leighton, Cheryl Strayed and Paula Younger.
My agent, Laura Yorke, read and liked my proposal and made sure it found its way to a wonderful editor.
And my editor at Sourcebooks, Stephanie Bowen, read closely enough to know me and guided my story with a sure and gentle hand. Misdiagnosed is a much better book because of her insight. Thank you.
About the Author
Photo by Joe Mahoney
Jody Berger is a freelance journalist and certified holistic health coach. She was a reporter for ESPN magazine for five years, helping to shape the way it covered extreme sports, and she freelanced for Self, Teen People, Harper’s Bazaar and others. Subsequently, she became a reporter for Rocky Mountain News, where she led the editorial teams at the Salt Lake City, Athens and Turin Olympic Games. She was awarded the prestigious Knight Fellowship at Stanford University, and graduated from the Institute for Integrative Nutrition. She lives in Denver, Colorado, and blogs at jody-berger.com.