If ever there were a misunderstood and highly overlooked medical condition in modern times, it is celiac disease. Celiac disease affects an estimated 3 million individuals, many of them children. Left untreated, this disease can damage the quality of life in so many ways — from neurologically-based depression and anxiety to skin problems to digestion problems and much more, including (rarely) cancer. Although celiac disease is gaining attention in the medical world, its symptoms are so varied that doctors often don’t see them as stemming from one disease. That oversight can leave individuals with celiac disease undiagnosed for years, which can be devastating.
Even after diagnosis, there are considerable challenges, as the treatment is strict avoidance of all gluten, even in minuscule amounts. That can lead to social exclusion, which is difficult, especially on children. In my newest book, William Edwards and the Wizardly Glasses, my co-author and I try to entertain while empowering children with celiac (and food allergies).
While dealing with social exclusion is important, it is only one aspect of dealing with the disease. I got a glimpse of the enormity of the consequences of having this disease and the impact a delayed diagnosis can have on an individual during my interview with Jennifer Esposito. You may know her from the hit TV shows Spin City and Samatha Who? or from blockbuster movies, such as Crash and I Still Know What You Did Last Summer. Now, Jennifer Esposito, who currently appears on Blue Bloods, has a new leading role: celiac disease advocate.
Jennifer Esposito was diagnosed with celiac in 2008. Four years later, on a gluten-free diet, she is still recovering. The damage to her small intestines was considerable, and the healing among celiac patients is not always fast. It can take years. And then there’s the problem of cross contamination and undisclosed gluten in food (see Kraft foods), which can cause further damage to the small intestines and a recurrence of symptoms. (Kraft advises buying products that specifically say they are gluten-free.)
What follows is my email interview with Jennifer. You can see my video interview with Jennifer here.
S.Z. Berg: Tell us the story that led up to your being diagnosed with celiac disease.
Jennifer Esposito: The story leading up to my proper diagnosis with celiac disease is a long one. I believe the average time it takes for someone to be diagnosed is eight years. For me, my diagnosis took 20 years.
Prior to my diagnosis, my entire life was filled with random ailments, from stomach issues to constant sinus infections and panic attacks, just to name a few of them. I was given numerous diagnoses. I was told that my ailments were either the cause of having a “nervous stomach,” “irritable bowel syndrome” (IBS), and mostly an overworked and stressed out system. At one point, I was also told I was in “desperate need of Prozac,” but I refused to take such a thing for all of the physical symptoms I was having.
In 2009, I almost gave up. I got to a point with my health that the medical advice/help I received wasn’t helping me get better or improving the way I [was] feeling physically: My knees would buckle when I walked. I was sleeping close to 16 hours per day and yet still didn’t feel well-rested. The stomach ailments where debilitating. My sinus condition had become intolerable. My panic attacks were making me agoraphobic.
On top of that my hair was falling out and my skin was so dry it was flaking off and the color of it was a lively shade of yellow.
On my last hope, I wound up at a general practitioner’s office. She sat with me for 2 hours and was perplexed but said she would figure it out. She conducted a few blood tests and in 2 days kept her promise. She called me with my results and told me, “You have the highest case of celiac disease I have ever seen, and I don’t know how you are existing.”
I was shocked and yet thrilled. Thrilled to know finally what plagued me for so many years. Shocked because I had been seeing a gastroenterologist for the past five years and he never even said the word “celiac” to me.
S.Z. Berg: What symptoms were you experiencing before being diagnosed with celiac?
Jennifer Esposito: My symptoms were all over the board. From stomach upset, exhaustion, joint pain, sinus infections, dry skin and hair, panic attacks, depression, back pain — the list could go on.
S.Z. Berg: Were you diagnosed right away, or did it take time for your doctor to figure it out?
Jennifer Esposito: For me, it took 20-plus years for a proper diagnosis, not to mention countless […] doctors and specialists. To this day, I still deal with the side effects of being a celiac and repercussions of improperly being diagnosed over the years. There is a lack of proper education about the disease for consumers and only now is the medical field paying closer attention.
S.Z. Berg: How long did it take for the panic attacks to stop and the depression to lift?
Jennifer Esposito: There is a misconception that if you remove gluten from your diet, you dramatically feel better. This is not true. Yes, many of the stomach issues and other ailment start to subside, but this is an autoimmune disease. Like any other autoimmune disease, it needs your attention everyday!
For a full-blown celiac patient there is no magic pill for this disease, not even a gluten-free diet. You must constantly be aware of what you are eating and maintain a healthy lifestyle and your vitamin and mineral levels.
For me it has been a long journey… and one that I still am on. The severe panic attacks have subsided as well as the depression, but with one bad meal they are ready and waiting to come to the forefront. That’s why I am determined to educate and make people aware of the truth about this disease.
I have created a blog called Jennifer’s Way […] to help people learn more about this disease and share my journey on the steps I took to help myself. The site includes tips, ideas, and advice on how to get started in this new life. I also share some of my favorite easy and good for you recipes that I’ve created. I’ve also founded Jennifer’s Way Foundation for Celiac Education to help make sure that going forward there is proper education about this disease in addition to helping to generate awareness to help people live a healthy gluten-free life.
S.Z. Berg: What tests and/or procedures did you have to undergo in order to get a correct diagnosis?
Jennifer Esposito: I had a blood test first that indicated that my case of celiac disease was “off the charts.” My celiac diagnosis was confirmed through an endoscopy. Both of which can come up false negative. It is imperative that you have correct testing.
S.Z. Berg: What would you like to say to doctors, in general, about your experience?
Jennifer Esposito: What [I] can say to doctors that may not have been taught about celiac disease in school? Celiac disease was once considered a “rare disorder.” It was only in the early 2000s when the prevalence rate of “celiac disease” (one in 133 people in the U.S.) was brought to the public light and the medical industry truly began to take note. (Dr. Alessio Fasano, director of the Center of Celiac Research at University of Maryland School of Medicine, published his groundbreaking study that established the prevalence of celiac disease, and his research is what helped ignite awareness in this country.)
I believe that the medical industry needs to focus on treating the individual person, the whole person, body and mind and not about money and mass studies of a disease. Until then we are stuck in the one pill fits all mentality and that nutrition is something you look at after you get a poor diagnosis. It saddens me that so many are suffering unnecessarily.
As this relates to me: My life is dramatically different and my health is a struggle everyday because of this negligence. The longer this autoimmune disease goes undiagnosed the worse it is for you.
S.Z. Berg: Socially, do you feel excluded by your dietary restrictions?
Jennifer Esposito: Life is completely different! Yes, exclusion is a big part of it. Of course, it’s not intentionally done, but it’s just not easy to be casual about food the way everyone else is.
Try to imagine knowing that with every piece of food you put in your mouth there is the potential that it can make you very ill. It’s not a fun feeling… Going out for dinner becomes daunting and travel becomes sometimes impossible.
Now we are also faced with a bigger problem. Gluten-free dieting is becoming a fad thanks to high-profile individuals who are removing gluten to achieve weight loss. This makes me want to scream! “Going gluten-free” may be a trend now, but there is a medical need, a dependency on being careful about not eating gluten and having meals properly prepared to prevent cross-contamination for the millions of people [who] have to deal with celiac disease.
I’ve experienced odd looks at me from wait staff when I say I need my meal to be completely gluten-free with a “yeah right” kind of attitude now. People are becoming cavalier about gluten-free, because they believe it’s the new quick fix to getting skinny. Well for the people whose lives depend on it to live, lets just say we are not too happy about this.
S.Z. Berg: Let’s talk about food. You’re Italian, and that means a lot of pasta and breads. How do you manage when eating with your family? How do you handle dining at restaurants?
Jennifer Esposito: I do not come from your typical Italian family, so missing big Sunday dinners isn’t an issue. I did, however, grow up loving food, though. Throughout my journey, I’ve taught myself how to make everything from cookies to cake to bread to bagels. All good for you without gluten, dairy, soy, [nd refined sugar….
My recipes and the food that I prepare are loaded with fiber and protein. Most gluten-free foods out there are so nutritionally challenged it’s sad. I’ve created my “All-Purpose Flour” and “Old Fashioned Pancake Mix” for that reason. I want people to have a healthy gluten-free food option.
S.Z. Berg: What advice can you give readers who think they may have celiac?
Jennifer Esposito: My advice for anyone who believes they have celiac is to not wait for someone to believe you need to be tested properly. If you believe that you have celiac then you must have an endoscopy. Done correctly, it is really the only way to know for sure. I get many emails from people saying their cries have fallen on deaf ears for years. I beg you to go to a new doctor, one that will hear you! Undiagnosed celiac leads to more and more problems. The sooner the diagnosis, the better.
Jennifer has a nonprofit organization, Jennifer’s Way, to help educate the public about celiac disease. Her Twitter handle is @JennifersWayJE.