An eerie thing happened to my friend Emily after her marriage ended. While she was packing up to move out with her three kids, she found a medical file in an old box under the bed that her mother had created during the first 2 years of her life. In it Emily discovered that she had been in and out of hospitals for stomach problems since infancy. On the last page of the file, like a cliffhanger to the end of a season in a TV series, there was an order from an internist recommending that Emily be tested for Celiac Disease. There were no results provided. To Emily, however, the file spoke volumes about what she had recently endured.
Emily has had stomach problems all of her life. She really and truly believed up until she turned forty it was a normal part of digestion to have cramping and diarrhea after meals. To add to the mystery, Emily also suffered from grand mal seizures up until she was eighteen. When they stopped, doctors surmised she must have outgrown them. To take it a step further, family and doctors both inferred that this could be an emotionally driven illness. After all, women were more susceptible to those kinds of conditions, they said.
Emotionally driven grand mal seizures? Really?
By all accounts Emily looks healthy, with her lovely youthful face, a Snow White complexion of big eyes, dark hair and fair skin. Perfect teeth. She has a gentle disposition that tells you she is calm, rational and clear about what is important in her life: faith, family and work.
Up until she turned forty, she figured that she probably had some lactose issues. Frequently, she would be at a restaurant and then have to run for the bathroom, citing, “It must be the cheese.”
Her tipping point came when, after coming home from a trip to Arizona, she missed her plane because she spent the night on the floor of an airport bathroom in Detroit. The only thing she had eaten in the hours before the flight was a scone.
After the airport incident, she limped along (as she puts it) for about six months. Things would get better for a while but then things got significantly worse. Her family doctor tested her stool and did some basic blood panels, but couldn’t find anything wrong. They referred her to a gastroenterologist for further tests. She got into bed and stayed there for ten days, over spring break 2007, eating nothing but noodles and toast, thinking the BRAT diet would be the blandest, easiest thing to digest. But she felt worse and worse each day. It was like she was being poisoned. Was there something in the water?
She spiraled down the rabbit hole, losing 10 lbs in 10 days. She couldn’t even get out of bed to go to the doctor. Through all this she suffered silently, staying quiet and alone in the dark like a hermit taking a vow of silence and starvation while her husband and kids tried to go about their lives, helping out where they could.
Emily says she survived this period with a lot of prayer. Concurrently, she says this was also a time when she realized that her marriage had run its course. She remembers thinking over and over about leaving her husband, how she thought she would die if she didn’t end things. This of course also made her rethink all of the messages about her health she heard as a child. Was this an emotionally driven illness? Is it all in her head? Was she crazy?
Women’s health care advocate Christiane Northrop states such health crisis moments can also be cathartic in different areas of a life. For many women, a health trauma triggers the need for other changes, like changes in a relationship or a career. The illness that presents can be a symbol for other illnesses. This does not mean that the sickness is emotionally driven. Physical illness is linked to all of our “selves,” our body, mind and spirit, as we seek happiness in this life. As Emily says, her body was screaming for help. Perhaps her heart was as well.
She felt great during pregnancy, even during all three pregnancies. She attributed it to eating well. And she was a pretty happy pregnant woman. After her babies were born, she became involved with La Leche League and stayed connected to the midwives who delivered her children and thus continued to be influenced by the holistic health mindedness that went along with their lifestyle. There was something of a newly discovered awareness going on. Emily says she remembers feeling good around that time, again, because of her healthier eating habits and learning about treating her body with organic, non-processed food and fewer carbohydrates. But the symptoms didn’t completely go away and by her fortieth year she hit rock bottom in that Detroit airport, spending the night crying and asking God, “What is wrong with me?”
A concerned friend told her about a doctor who made house calls. Enter Doctor Dappen.
Dr. Alan Dappen, from the medical group, Talk Doctor of Vienna, Virginia, came to visit her at her weakest, sickest moment. He gave her some meds to treat her symptoms so that she could get out of bed, go to the gastroenterologist for the prescribed tests and return to work a little bit.
In the midst of getting the lab work underway, Dappen called Emily to check on her. She told him that it was strange. While she was fasting for 48 hours (which was necessary for the upcoming endoscopy and colonoscopy) she started to feel better, stronger.
A couple of days later, while waiting for the test results, Dappen called back. He said, “I’ve been thinking about all you’ve told me. I think you have Celiac Disease. Even if the tests come back negative.”
Celiac Disease (CD) is a lifelong inherited autoimmune condition affecting children and adults. When people with CD eat foods that contain gluten, the common name for the proteins in specific grains found in foods like pasta and bread, it creates a toxic reaction that causes damage to the small intestine and does not allow food to be properly absorbed. All gluten must be eliminated from the diet.
The results came back negative. Dappen told her to go ahead and try the new diet for thirty days, regardless of the test results. She felt instantly better. To go from bed ridden to resuming all normal activities within two days spelled it out for Emily.
The tests can be falsely negative or inconclusive, which happened in Emily’s case because of how the test is conducted. The endoscopy is a procedure that scrapes a sample from inside of the intestines and uses the sample to test for CD. The scraping may occur in the intestine where the disease is not apparent; hence the tendencies toward false negatives.
The website, www.celiac.org, states that the onset of Celiac Disease can occur at any time in a person’s life. Once a person is diagnosed, family members should be urged to get tested as well. Interestingly, Emily’s aunt was recently diagnosed at sixty with CD.
Her gratitude is ultimately for Dr. Dappen, who she credits as the only doctor who really listened to her in the midst of her crisis. Other doctors had been uncompassionate. When she went to see the family medical practice, she ended up in tears, telling the nurse practitioner that she hadn’t been able to get out of bed and had missed a lot of work. She says the NP told her to go see a gastroenterologist and handed her a referral.
It’s getting easier for Emily to find the hidden gluten in foods. All processed foods are notorious with gluten in the ingredients. Sauces, too, often carry a lot of gluten because flour is used as a thickener. Salad dressing and soy products are also big no-no’s. Fortunately, gluten free labels are more commonly found on food packaging these days.
People ask all the time, don’t you miss cake? To which she replies, “Not at all. I feel gratitude to be healthy again. It is so very freeing. When I think of how I was held captive by this illness, nothing compares.”
When asked about giving advice to others who suspect they may have CD, Emily says, “Find a doctor who will really listen to you. In your personal experiences there are clues and wisdom to be unearthed.”
Just like a medical file under the bed.
Northrop, Christiane. “Women’s Bodies Women’s Wisdom: Creating Physical and Emotional Health and Healing.” New York: Bantam, 1998.