Faces of Celiac: Featuring Dr. Jess Madden, MD

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.”

KQxqEg.md.jpg

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?

Faces of Celiac: Meet Kim Ohlweiler

This Sunday I would like to introduce you to the latest volunteer Kim Ohlweiler. She’s a self-diagnosed Celiac, mother and true survivor who has graciously offered to share her story in hopes it will help others with gluten-related disorders.

Faces of Celiac

Here’s Kim’s story:

“I grew up in rural north-western Ohio. I headed off to the big city as soon as I could, and spent 30 years as a high school band director in the greater Cincinnati area. I am very happily married with two grown children and 3 dogs. I was lucky enough to be able to retire in 2008 and now enjoy the good life with my sweet husband.

My celiac disease story begins very early in life. I remember having diarrhea as a very young girl, as young as 6 years old. I could even have had it before that, but I don’t remember and have no one to ask. My father passed away over 20 years ago, and my mother was deep into Alzheimer’s and wasting away herself when I discovered that I have some kind of gluten problem. In retrospect, I suspect both my parents may have had undiagnosed celiac disease. For myself, I do remember a lifetime of illness and a revolving door of doctors. I had persistent infections– tonsillitis, sinus infections, ear infections, and bronchitis, not to mention a myriad of viruses, beginning at age 7. I was on antibiotics constantly. I can only imagine what effect this has had on the microbes in my gut. I had strep-A pneumonia and viral meningitis as an adult, and now have non-allergenic asthma. I have had infrequent migraines, carpal tunnel syndrome, contact urticaria, an undiagnosed horrible itchy rash, balance problems, and brain fog. I even started going through menopause when I was only 39.

I was diagnosed with IBS at age 14 and was put on a drug (the name of which I don’t recall) that made me feel awful and have a very dry mouth. When I was 16, my family doctor put me in the hospital where they removed my tonsils and determined that I had a low-grade form of mononucleosis which they said I may have had for years. (Was this a missed diagnosis?) I was in the hospital on IV antibiotics for over a week. The infections subsided for a few years after this, but not the diarrhea and its accompanying cramps, bloating, and misery.

In college, I visited the on-campus clinic looking for help, and the doctor took me off the medicine I had been on for years, saying that it was a bad combination of chemicals that he wouldn’t prescribe for anyone (!) and suggested an elimination diet to get the diarrhea under control. I learned that I couldn’t drink carbonated beverages or eat raw vegetables or greasy foods, but gluten wasn’t on the list of things to avoid. Indeed, I had never heard of gluten. I stuck with that diet for years because it made me feel a little better, but the diarrhea never stopped.

After my first pregnancy at the age of 25, during which I had toxemia and which resulted in a c-section, I began my now life-long battle with obesity. In the 10 years following my son’s birth, I gained and lost over 1000 pounds. I was using Weight Watchers and successfully losing weight, but the weight never stayed off. I now weigh 230 pounds. Whether or not there is link to celiac disease here, I don’t know.

My doctor diagnosed me with metabolic syndrome several years ago, and I began what I saw as the fight of my life to not have diabetes, heart disease, liver disease, and arthritis. I have seen doctor after doctor; gynecologists, gastroenterologists, allergists, endocrinologists, dermatologists, otolaryngologists, surgeons, and chiropractors, and not one of them thought to test me for celiac disease. There were 46 doctors in all who missed it. Meanwhile, I began searching for my own answers.

I developed gall bladder disease in 2007 and was told by the surgeon who removed my gall bladder that I also have Fatty Liver Disease. In a discussion about weight and my diet, she said she suspected I didn’t get enough protein in my diet. I asked how much I should eat, and she said that I should be getting about 70 grams a day. This started me on a quest to figure out how much of everything I should be eating. How many carbohydrates? How much fat? What about sugar, vitamins, and minerals? The answers were not readily available to me despite extensive research, so I read as much as could find, then I guessed. At this point, no doctor had even suggested I see a nutritionist. And still, no thought of gluten entered my mind.

I developed a spreadsheet on which I tracked everything I ate. I read nutrition labels and looked up nutrition information on-line. I transferred all of this information (carbs, sugars, fiber, calcium, fats, protein, and calories) to a chart in my spreadsheet and created a Meal Calculator so I could calculate totals for casseroles and other multi-ingredient foods. In an effort to avoid getting Type-2 Diabetes, I decided that I should cut down on carbs. To me, this meant that I should know exactly what that meant! Again, I couldn’t find much information with any specific recommendations, so I decided on my own based on various readings that I would eat 20 grams of carbohydrates a day for two weeks to detox, and then eat 50-100 grams of carbs per day after that, not including “white foods” like bread, flour, rice, sugar, and potatoes. I balanced that with trying to achieve a 30% / 60% ratio of protein and fats calories. I also cut out most fruit, believing that fructose would impact my liver. I have no idea if this is correct, and the several doctors with whom I tried to discuss it now told me to see a nutritionist. I’m sure they were right about that recommendation, but since I have been through so many doctors and so many tests, and since nutritionists’ fees aren’t covered by my insurance, and since no one in this area advertises having specific knowledge of celiac disease, I haven’t sought out their expertise in person, only through online blogs and articles.

On my self-designed low-carb diet, my numbers in my blood work improved. Blood sugar came down, cholesterol came down, liver function improved, but I didn’t lose weight despite eating very low calories. I was surprised to find out that I was only eating between 900-1000 calories a day when I first started tracking my food! I had been doing this for years as I learned by going back through my Weight Watchers’ Journals and converting them from their points system to my new system. I began to force myself to eat between 1500-1800 calories per day and I honestly found it difficult to do. I would often get to the evening, after dinner, and still have over 500 calories to eat that day! I also started walking a mile and a half 4 days a week and working with a personal trainer once a week. My weight has not gone down. My doctors act as though they don’t believe that I am on a low-calorie diet and that I am exercising regularly.

Before Christmas 2012, a year and half after starting my low-carb diet, I decided to crochet gifts for all of my family and friends. By Christmas time, the arthritis in my fingers was so bad that I had to use an ergonomic crochet hook just to complete my gifts. I continued after Christmas working on a blanket I was making for my own family. My hands got so bad that I simply couldn’t continue. I also had inflammation in all of my other joints, especially my hips. Walking was difficult. Getting up out of a chair was difficult. I was miserable, unable to think, unable to exercise, and getting sicker every day. I was only 57 years old and not quite ready to sit all day! In May of 2013, my lovely daughter, Emily, who is 28 years old, suggested that I try going off gluten for a couple of weeks and see if I felt better. I still didn’t know what gluten was, and when she told me, I resisted. Not eat bread? The Staff of Life? No pasta!? That couldn’t be causing a problem, I insisted. Emily persisted, though, telling me she had read that a lot of the symptoms I was having could be caused by gluten sensitivity. So I tried. And it worked! By the end of 6 weeks – mid June, 2013 – I had figured out how to eat gluten-free. The low-carb diet had already gotten me eating whole foods, unprocessed foods, and healthier foods in general, so the switch wasn’t as hard as it might have been otherwise. I made some mistakes (thinking I could have a little piece of wedding cake at my nephew’s wedding since I had been so good about carbs,) and I got “glutened” in a couple of restaurants before I completely figured it out, but now I’m a good home cook and have converted most of my recipes, and those of my family and some famous chefs to gluten-free versions. I rarely eat in restaurants any more.

I have seen three of my doctors since my self-diagnosis. My gynecologist rolled her eyes and said, “If it makes you feel better…” I won’t be seeing her again. My asthma doctor would like for me to confirm the diagnosis, but he hasn’t yet convinced me that it will improve my situation. I figure that they have been treating me all along without testing for this, so now they have to take my word for it. My family physician whom I have seen regularly since the end of 2005, agrees that based on my reports and the improvement in many symptoms, that I do have celiac disease and that doing a gluten challenge just to prove it is unnecessary now that I have been off gluten for nearly a year. My persistent brain fog is gone, I haven’t had a migraine since, the arthritis is gone, I have a ton more energy, and I occasionally have normal bowel movements. I have never had normal bowel movements in my entire life, so it was truly shocking when I did! I was doing well until recently when I got a sinus infection. 2 weeks on Amoxicillin sent me into a tailspin and now I have diarrhea again, but it seems different somehow. I’m wondering if it might be that I still have IBS… I’m hoping that my system will restore its healthy bacteria and heal itself soon.

I have informed all of my family members that I have celiac disease and I know that 3 of them are scheduled to be tested before going off gluten. Their confirmation will be mine as well, the way I see it

After all this, I still have one big struggle to overcome. Why am I still overweight, despite my gluten free diet and activity changes? I don’t eat substitute gluten foods (like bread, cookies, pasta) often. I eat whole foods that I prepare myself and have increased my vegetable intake considerably. I haven’t read that there is a link between obesity and celiac disease, although I have read recently that doctors are beginning to test bariatric surgery candidates for celiac disease since they are finding that many of them do have it and that bariatric surgery is contra-indicated in that situation. I have also recently read that doctors should test for celiac disease when one presents with gallbladder disease. Too late for me, but it’s another piece of the puzzle.

I have tackled my disease only with the help of the celiac/gluten sensitivity community. Until medicine catches up, it seems we’re on our own, at least where I live. I am grateful for my online resources. They have made such a significant difference in my life that I can only hope my story helps someone else along their journey.”

Do you want to share your story and be featured in the Faces of Celiac?

Faces of Celiac-Marylee J. Dumas

Mary, as she preferred to be called, was born to an old New England farm family that originally immigrated to the United States from England in the early 1700’s. She was one of ten children, six of which were girls. All but two of Mary’s siblings have passed. Mary passed nearly two years ago due to what the pathologist ruled as a heart attack, although Mary had no known heart conditions with the exception of borderline high cholesterol.

Mary lost her mother to polio when she was just nine years old. This left a lasting scar for Mary that shadowed her for the remainder of her life. At the age of 14, Mary, unhappy with her father’s drinking and home life in general, ran away from her home in New Hampshire and moved in with a Vermont farm family. Once there, she got a job at a local poultry processing plant where she plucked the feathers off chickens for a living. Several years later she would marry Kenneth, one of the sons of the farmer who had taken her in.

Kenneth and Mary eventually got their own apartment and soon had their first child. Later they would have a total of six children; however, the eldest, Debbie, died at just 4 years old from spinal meningitis. This loss, along with other irreconcilable differences, would eventually lead to divorce for the couple.

Still a vibrant and attractive woman, Mary kept fit and ate healthy. After the divorce, money became tight. To save money, she used her farming skills to grow and can her own organic but not yet gluten free food. In those days, cow manure was the natural fertilizer of choice.

The first few years of being a single parent were trying and Mary experienced occasional bouts of depression, which she tried, unsuccessfully, to hide from her children. During these times she would become frustrated and angry over the simplest things. While in her early thirties, Mary began to become ill and depressed more and more often. Was it the stress of motherhood and everything that goes with it? She didn’t know. She began seeking out help from doctors in the nearby town. She went from one doctor to the next, trying to find one who could tell her what was wrong. Her intuition told her there was something seriously wrong health-wise, but every doctor she saw said she was just overworked and overstressed.

She finally found a specialist several towns away who was affiliated with a large research hospital. He wasn’t sure what was wrong, but suspected Irritable Bowel Syndrome (IBS). After a number of tests to rule out other disorders, her doctor settled on IBS; however, the specialist was still not convinced her symptoms were exclusively IBS.

Her doctor also suspected Mary might suffer from allergies. After being subjected to a prick-test panel, Mary learned she had many allergies, ranging from cat dander to mold, rag weed and even pollen.

Meanwhile her general practitioner had Mary convinced she was a hypochondriac. And it didn’t help that some of the town’s people, like so many small towns, gossiped about Mary’s condition.

Mary’s depression became more acute as time went on and she began to feel fatigued more and more often. She would come home from work, feed her children and then lie down from exhaustion. Sometimes she would sleep throughout the entire weekend, rarely getting out of bed.

Many years later, Mary sought out alternative doctors who tried acupuncture, hydrotherapy and a plethora of new-aged therapies and treatments to help her regain her vitality. All seemed to work temporarily and marginally, but she eventually became resigned to the fact she would never truly be completely healthy again. She developed osteoporosis while in her 60’s.

Several years ago, Mary received a call from her middle child Steven, who was living in Chicago at the time. Steven was a college professor and had been recently diagnosed with Celiac Disease. He had spoken to Mary on many occasions about health-related issues; and they both found themselves comparing their symptoms. It was during this particular phone call that Steven suggested Mary get tested for Celiac Disease. He had learned a great deal in the recent months about the disease and read an article suggesting there was a genetic link. The article quoted a study that 1 in 22 first-degree relatives were found to have the disease. This was enough to suggest she might consider getting tested. As they recalled past health conditions one by one, it became clear to Steven that his mother was indeed Celiac. Their family was riddled with stomach ailments. Mary’s youngest son Jeff suffers from GERD; her only surviving daughter Cindy and oldest son Michael both have suffered from gastrointestinal issues for many years. Mary even recalled having ADHD-like symptoms as a child, as did Steven. Some of the reasons she held Steven back from first grade was because of his small stature and inability to focus and pay attention. His school teachers just assumed he was immature and supported Mary’s decision to hold him back. Steven even displayed mild dyslexia, which we now know has been linked to Celiac Disease.

Before they hung up the phone, Steven made Mary promise to get tested. She agreed to speak to her doctor at her next appointment. Unfortunately it would be too late.

A few weeks later, on Sunday March 18, 2012, Mary passed away of an apparent heart attack. She was 71 years young. In case you haven’t already figured it out, Mary Dumas was my mother. She was one of the most compassionate people I have ever known and she was my greatest teacher. Her birthday was yesterday, January 15th. I would like to dedicate this Faces of Celiac post to all those who have suffered and continue to suffer from Celiac Disease because they have yet to be diagnosed.
moving to gluten free nutrition can change your life.

Do you have a gluten-related story you’d like to share with the community?