Today marks the debut of the Faces of Celiac series, which I hope will help others find comfort in knowing they are not alone and that Celiac Disease (CD) and Non-Celiac Gluten Sensitivity (NCGS) are not only manageable, but that these disorders offer a particular opportunity for us to reexamine and reshape our lifestyles and help us live more thoughtful, healthier and more conscious lives.
And it is my great pleasure to kick-off this new series with none other than Dr. Jess Madden, MD, known to some as The Patient Celiac.
Photo – Jess MaddenI first met Jess during the International Celiac Disease Symposium (ICDS) 2013 conference held for only the third time here in the United States. It was an exciting week-long series of workshops hosted by the University of Chicago’s Celiac Center and attended by Celiac patients, clinicians, nutritionists, researchers and some of the world’s leading medical professionals and scientists in their respective fields.
Before the conference, Jess and I knew each other only via social media. I had discovered an interesting article she had written about a topic I was researching, which I found very informative. And the fact it came from a medical doctor with CD added, for me, an extra coating of credibility. I friended her on Facebook and we began to correspond. I learned she’d be attending the ICDS conference and so we decided to meet up during that week.
We met on the second day of the ICDS conference and that’s when I learned she was a neonatologist working in a neonatal intensive care unit of a community hospital. Her husband is currently a stay-at-home dad to which Jess credits with the ability to “have some semblance of balance” in both her career and home life.
Although now living in Wisconsin, Jess is originally from Cleveland, Ohio where she was the oldest of five children. Her dad was a computer engineer and her mom a small business owner. Although only 8 years old at the time, Jess says she knew she wanted to become a doctor “after listening to a pediatrician speak to our Girl Scout troop.”
Years later, while putting herself through medical school, she held a variety of jobs including “waitressing, babysitting, cashiering, data entry, stuffing envelopes, softball game score keeping, telemarketing, selling sweatshirts at a mall kiosk, candy making, and as a sales associate at an Ann Taylor store.” It was during their freshman year at the University of Notre Dame that Jess and her husband Tom met. That was 13 years ago and now they have their own family with three daughters and one son, ranging in ages from 20 months to 8 years.
Some activities that Jess enjoys are running, reading, hiking, baking, yoga and traveling. While she does enjoy skiing, she admits “it’s been 9 years since I was last on skis!”
Jess was 33 years old before she received her diagnosis of CD. However, in hindsight, she recalls numerous symptoms that pointed towards the disease. She recalls having “digestive symptoms, including chronic abdominal pain, bloating, and diarrhea, which started when I was 8 or 9 years old.” Adding “I clearly recall looking like I was about 7 to 8 months pregnant after eating pasta dinners when I was in high school. I also developed an itchy, blistering rash on my back and shoulders during adolescence.” And her symptoms got particularly bad when she started waitressing at an Italian restaurant.
It was during college she received her diagnosis of Irritable Bowel Syndrome (IBS), which was not uncommon for doctors to diagnose given her symptoms. In fact, some of my Facebook followers tell me that even today, in some rural areas of the country, doctors continue to diagnose IBS when it’s actually CD.
In her early to mid-twenties, while attending medical school, Jess became “chronically anemic and had new autoimmune symptoms resurface, including joint pains, easy bruising, canker sores, Raynaud’s phenomenon (episodes of my hands turning white and cold), and Hashimoto’s Disease (autoimmune thyroiditis).“ She also had “evaluations for lupus, Lyme disease, and rheumatoid arthritis multiple times, and at one point was told that I possibly had a form of atypical lupus.”
In 2009, just after giving birth to her third child, she began to have daily diarrhea and low-grade fevers; canker sores developed in her mouth and she experienced growth issues with her hair and nails. Brain fog set in and she “could not think clearly, almost as if I had a chronic hangover” even though she was avoiding alcohol due to breastfeeding. “I was certain that I had either a serious autoimmune condition or cancer.”
It was only after catching a virus from her children that she learned just how influential a diet can be to one’s health. “I did not eat for about 2 to 3 days because of nausea and vomiting. Amazingly, despite vomiting over and over again and being sick with a virus, I actually felt better than I had in a long time. My energy improved, my mind became clear, and my joints stopped aching when I stopped eating due to the illness. Then, as I started to eat again, mostly toast and chicken noodle soup (foods with gluten), all of my symptoms came back and the sacroiliac (Back pain) began. It became clear that I was reacting to something in my diet.”
Jess made an appointment to see her primary care physician right away. He diagnosed her based “on symptoms that resolved with the disappearance of gluten, returned when gluten was reintroduced, and having markedly elevated celiac antibodies (TTG IgA and Endomysial IgA) on 2 separate occasions while still eating gluten.”
Upon learning she was Celiac, Jess said she felt both “sad” to learn she had the disease, but “relieved” to finally have an answer. Adding, “I had always had a gut instinct that there was something more than stress and IBS going on with my body.”
When her family learned of her diagnosis, she said they were “overall very supportive, especially my husband.” Occasionally she would hear comments such as “I would die if I had to give up gluten,” from friends and “well-intentioned family”, which she suggests is “not a helpful thing to say to someone who has just been told that they need to be gluten free for life!”
Jess knew she’d have to go on a strict gluten-free diet immediately, which was especially difficult because her mother is Italian and most of the food she ate and learned to prepare consisted primarily of bread and pasta.
Besides the “last night of eating cheesy bread from a local pizza shop and an entire sleeve of Thin Mint Girl Scout cookies” Jess has stuck with this strict diet. That one night of indulging, however, had its price and served as a lesson. “My body hated me after doing this and I had no doubt then of my celiac diagnosis.”
Jess recalls her first experience with gluten-free bread: “My first gluten-free bread was Ener-G bread, the only loaf available at my local grocery store. I actually cried as I tried to eat it and make a grilled cheese sandwich with it and threw it in the garbage. I felt very sorry for myself during the first few weeks and mourned the loss of all of my favorite foods.”
Jess also found that as time went on, things did get easier. Although the occasional glutening kept her mindful and on track. “It became much easier to stick to the diet as my body healed and as I began to learn how to cook gluten free and eat differently. I am very sensitive to gluten contamination and every glutening that I experienced (of which there were many at first) reminded me of how important it was for me to stick to my diet. After about 2 to 3 months I stopped missing cookies, pies, bagels, beer, pizza, etc. and by about 8 to 12 months I felt pretty confident with my new life style. It definitely did not happen overnight and I made a lot of mistakes and had a lot of glutenings in my first year after diagnosis.”
Although it took a while for her to get a handle on eating this way, Jess says she started noticing the benefits almost immediately. “I started to feel better within days to weeks and by the 6-week mark of being gluten free I felt the healthiest that I could ever remember.” She says she still gets glutened now and then, and the last significant glutening was nearly a year ago and adds “I realize that I am long overdue!”
Now that the future looks a bit brighter and she has her gluten-free diet under control, Jess is back to some of those things she enjoys. “My energy level is a million times better. I was able to start to run again, like I had during college, because my joint pains went away. I no longer have abdominal pains and diarrhea on a regular basis and I no longer have a chr
onically bloated abdomen. My hair and nails actually grow now and people no longer tell me that I look tired all of the time. My depression is gone as well. I feel healthy and like I have control over my body.”
Although her symptoms are now under control for the most part, Jess mentioned that she has noticed other sensitivities and intolerances that have cropped up since going gluten free. “Since going gluten free I have developed a soy intolerance and I get headaches, joint pains, and nausea whenever I accidentally eat anything made with soy protein or soy flour. I did not eat much soy prior to diagnosis so it is unclear whether or not I had this problem all along. I also developed a sulfite allergy in 2012, about 2 years after going gluten free. I had never had any allergies before this time, outside of hay fever. In late 2012 I developed a celiac-induced peripheral neuropathy (nerve inflammation leading to numbness and tingling). It slowly resolved but returns in my hands, feet, and upper lip, every time I have accidental gluten cross-contamination. I definitely did not have this problem prior to my celiac diagnosis and going gluten free.” Jess is not alone in this. Many people develop new sensitivities to other proteins including corn, rice and casein (milk protein).
When asked what was the single most important discovery along her journey of embracing a gluten-free lifestyle? Jess replied: “I no longer take my body for granted and I do my best to take care of it through diet, exercise, and rest. My family and I eat a much healthier diet than we did in the past, something that would not necessarily have happened without my Celiac diagnosis. Prior to this we ate a typical American diet that included quite a few processed foods. I really hate to think about the poor quality of our diet in the past.”
Asked what advice she would give to someone newly diagnosed with CD and about to begin their long journey, she offers these pearls of wisdom: “To be patient with yourself as you start on this journey and to realize that we all make mistakes that lead to glutenings, especially at first. Also, to become a strong advocate for your health and to learn to speak up and ask questions about how food is prepared at restaurants, social gatherings, etc. to be sure that it is safe before you decide whether or not to eat it. People are continually amazed that I can get sick from exposure to just a crumb. Lastly, I think it is important to try to get involved in some sort of celiac support group and to get to know others who are in a similar situation. I wish that I had done this sooner.”
Here is a final thought (unedited) from Jess Madden, MD:
“I was really taken back when I developed the peripheral neuropathy after being gluten free for almost 3 years, as I thought I had been doing everything right (I have a very Type A personality). Although we kept a shared kitchen I had my own GF cabinet, condiments, cutting board, toaster, utensils, etc. It was not until we took all gluten out of my home that my neuropathy resolved, which means that I was somehow getting cross-contaminated in my own home. Since then I have learned that neurologic symptoms are very common, but under appreciated, in those of us with CD. Having CD keeps me on my toes and surprises me from time to time, but at the same time has made me appreciate all other aspects of my life and things that I am able to do. I don’t think that I would have any real appreciation for the food I eat or my ability to run and exercise if I had not been diagnosed. So, in many ways, CD has been a blessing in disguise for me.”
Thank you Jess for volunteering for this project!
You can follow Dr. Jess Madden on Facebook (The Patient Celiac) and Twitter (@PatientCeliac) or visit her website at www.ThePatientCeliac.com.
Do you want to share your story and be featured in the Faces of Celiac?