Madeline’s* first memory happens in the bathroom. She’s 3 years old and curled up on the cold linoleum floor in the middle of the night. She’s crying because the pain in her stomach is so bad it’s keeping her awake. She alternates between bouts of uncontrollable diarrhea and brief moments of restless sleep on the floor with her mom holding her hand beside her.
Things didn’t get easier as she grew up; they got much worse. At 17, Madeline needed to stay close to a bathroom at all times. She had trouble staying out of the grip of depression while mood swings complicated her emotions and relationships. As her mental and physical health suffered, she tried to control the only thing she could: her weight. Madeline ultimately stopped eating altogether out of an intense fear of food making her run to the bathroom and her need to keep something constant in her life. She struggled against this fear of food into her adult years.
Finally, in 2007, Madeline got the answer to her ailments: celiac disease.
She wishes she knew that removing gluten from her diet would have made her college experience memorable for the right reasons. Instead, Madeline missed out on experience after experience. Her friends and roommates eventually stopped inviting her to parties and events. She was usually much too tired to even entertain the idea of going out – she had a hard time putting her extreme fatigue into words. When studying abroad in Italy, she became homebound because of her symptoms.
Madeline isn’t alone in her lifelong battle for understanding and a diagnosis. Like many with celiac disease, including myself, she bounced from doctor to doctor for years, desperate for answers.
Celiac disease is a serious genetic autoimmune disease that’s triggered by eating gluten, a protein found in wheat, barley and rye. An autoimmune disease is a condition where the body launches an attack on healthy tissue, leaving it damaged and triggering a list of life-interrupting symptoms. For celiac disease, we know that gluten prompts this reaction in the body and that removing it can eliminate or significantly minimize symptoms and halt damage to the body. In all other autoimmune diseases, no triggers are known.
I’ve become an avid follower of Moises Valasquez-Manoff, an author who lives with autoimmune diseases. He recently published an article in the New York Times that went viral in the celiac disease community called “The Parasite Underground.” He writes about what he calls a “shadow network” of patients desperate for a solution to their diseases. So desperate, in fact, that they voluntarily infect themselves with gastrointestinal worms.
Manoff infected himself with these hookworms to see what they could do for him. He noticed some relief of his symptoms, but it ultimately didn’t last. He cautions that using parasites is under-studied and doesn’t come without risk. Ultimately, he “encourages skepticism” and reinforces the fact that success stories are still anecdotal only.
On the other end of the spectrum, there are researchers experimenting with fecal transplants. Yes, fecal transplants.
These work exactly the way they sound. Doctors will take stool from a healthy person and transplant it into a person living with a specific condition. Right now, some researchers are looking into this for conditions like ulcerative colitis, Crohn’s disease and even diabetes and obesity. The idea is that a person with a certain health condition has an altered microbiome ― the healthy bacteria that colonize within the gut. Researchers hypothesize that a fecal transplant from a “healthy” person can restore balance in the gut and correct illness in the patient.
I admit that I don’t know if fecal transplants or strategic parasitic infections are the future of medicine; no one does. I’m fascinated by the science of it all. Despite my fascination, though, I can’t help but see the biggest, most glaring issue of them all:
People are absolutely desperate for relief and are willing to try anything once mainstream medicine has failed them.
It goes back to the mission of Beyond Celiac, a national non-profit I founded in 2003. We must find a cure for celiac disease. Until then, Beyond Celiac will push for solutions to make life with celiac disease easier, happier and healthier.
There is just one caveat; we can’t do it without participation in research from the people living with celiac disease. Without real-life patients with real-life problems, researchers won’t know how our problems need to be addressed. They won’t have the data they need to make breakthroughs and crack the code on a number of unknowns, like why celiac disease is triggered in some people and not others, for example.
For celiac disease specifically, we don’t have a real solution. Sure, we have a way to manage it through the gluten-free diet, but that’s not a real solution. Some 70 percent of people with celiac disease are still exposed to gluten, even though they are trying their very best to stay 100 percent gluten-free. It’s not easy. Think about every time you put food or drink or anything else in your mouth. Now imagine if you needed to research it, scrutinize it and hope that it’s completely free from something that’s poison to you. Imagine knowing that each mistake you make could lead to days or weeks of symptoms, missed work or other events and serious health consequences, like other autoimmune diseases, infertility and even certain cancers. It’s a heavy burden to bear day in and day out.
Would I ever consider parasites or a fecal transplant if it were an option? I won’t completely rule it out. If my symptoms ever amounted to what they were before I was diagnosed, I would in a heartbeat. Now that I’ve had my health mostly restored, I don’t ever want to lose it again. I know others who feel the same way; many people have come to me with questions on the topic and to find out if there are any doctors who are willing to try fecal transplants.
As for Madeline, she wouldn’t say the gluten-free diet has been a cure-all, nor has it made her life any easier. Now, it’s just a different kind of hard. Her friendships and romantic relationships are still impacted by her disease, only this time, it’s the misunderstood treatment that’s the problem. She is still fearful of food and is exhausted from having food as the main focal point in her life.
Like me, Madeline is also intrigued by alternative therapeutic options. Until they become available, we’ll do our part. We stand at the ready, eager to jump in when science needs our help to cure our disease.
*Name has been changed