On a daily basis, Jess Madden experiences two sides of medicine. As a neonatologist with celiac disease, she has the dual identity of being both a doctor and a patient.
At work, she cares for the smallest and newest patients. In her personal life she becomes the patient as she manages celiac disease, an experience she shares on her blog, The Patient Celiac.
The name of the blog is a nod to her double role, but it also refers to her need to be patient while continuing to find her way on the gluten-free diet.
After years of being sick with undiagnosed celiac disease, Madden finally received a diagnosis in 2010. Like many others, she had a lot to learn at the start. Although she thought she was doing well, in 2012 she developed neurological symptoms and realized she needed a more in-depth understanding of the disease. And The Patient Celiac was born.
Madden, who lives in Green Bay, Wisconsin, with her husband, four children and a niece, offers a unique perspective to her blog readers.
She writes about celiac disease research and studies, sharing what she discovers in terms that are easy for her readers to understand. Her quick grasp of complicated topics and her ability to translate information clearly in rapid-fire tweets at the International Celiac Disease Symposium caught the attention of Gluten-Free Living’s editor. Madden subsequently wrote several stories for the magazine.
In addition to the medical side of celiac disease, Madden often writes on her blog about celiac disease and her family. And with four little ones, that means keeping an eye out to see if any of her children develop symptoms.
This Sunday, Madden will add another celiac disease dimension to her life when she runs the New York City Marathon as part of the Celiac Disease Foundation’s Team Gluten-Free. This will be her third marathon, but her first running in the widely-known New York City race.
As she was preparing for the race, Madden shared what a typical day is like for a doctor, mother, blogger and marathon runner.
What time do you wake up?
I wake up between 4:45 and 7:00 a.m. And that just depends on if I am motivated to run or go to yoga before my kids wake up.
What’s for breakfast?
I either eat a bowl of gluten-free oatmeal and some fruit, or I make a smoothie and use whatever I can find in the fridge. It’s usually kale, berries, almond milk, and I’ll throw yogurt in or almond butter. I drink a lot of coffee.
What is your morning routine?
Usually, it’s pretty hectic getting three of my four kids and my niece off to school between eating breakfast, getting dressed and making sure they have their homework. I am getting ready for work, too. Luckily, I wear scrubs to work. The kids are out the door by 7:45 a.m. I leave the house at 8:00 a.m., and my workday starts at 8:30 a.m.
What’s an average day like for you?
I work in a neonatal intensive care unit (NICU). From 8:30 a.m. until about 2 p.m. we do what’s called “rounding.” I go “bed side” and see every baby in the unit. I examine them, make a plan for the day for each one, update the family and write a daily progress note.
It’s broken up because if there is a high-risk delivery or a premature baby being born, we leave the NICU to help out. I do consultations, and then I make a lot of phone calls. Until I leave at 4:30 p.m., I do administrative work, catch up on emails, or I start to read articles on celiac disease.
I work night shifts about six times a month and that’s when I work on my blog. Most of my writing is done at 1:00 a.m. I’ll post to my blog at 3 in the morning and the same with my Facebook posts and tweets on Twitter. The nurses I work with in the NICU are so used to hearing about everything I’m writing about. They have been very involved in the process, too. Some of them help me proofread posts.
When I work at night, it’s not the typical day I just described. On those days, I spend a lot of my time with my 2-year-old. I use those days for catching up on life. The next day I sleep during the day.
What’s for lunch?
Lunch is usually leftovers from dinner the night before. I am really fortunate right now that my husband is doing all of the cooking. If I forget to bring lunch, we have a doctors’ lounge and one of the members of the food services team also has celiac disease and will leave me gluten-free food. Sometimes I get a salad and hard boiled eggs.
Is there anything surprising about your day?
Things can get really hectic at a moment’s notice in neonatology. I never know when a woman is going to come in and deliver a premature baby. It’s an environment where things can change really rapidly. You can have a baby who is fine and gets really sick all of a sudden.
What’s for dinner?
We are a totally gluten-free home. Our typical rotation includes chicken or seafood, enchiladas and pizza.
What’s your favorite part of the day?
My favorite parts of the day are when we eat dinner together as a family and then the time between dinner and getting my kids tucked into bed.
Where do you find inspiration for your blog posts?
It’s twofold. I search a lot on PubMed [medical literature and journals] looking at the recent journal articles. When something catches my eye, I start reading. I also get a ton of emails from readers with questions or anecdotes, which will lead me to do research and write a post. Initially, more of my inspiration was from published journals, but now it’s coming more from readers.
What is it like to reverse roles and go from a doctor to a patient?
Other than when I gave birth, it’s really the first time I have ever been in the patient’s position. That’s been really eye opening about how much room there is for improvement in patient/doctor communication and in terms of determining difficult diagnoses, as celiac disease can often be. I think it has made me much more empathetic with patients and their families.
My blog’s name is a play on words because I try to be patient with things, but I have a tendency to not be. In terms of healing, I do have to have patience.
What has blogging brought into your life?
Outside of the food services team member with celiac disease, I don’t know many people with celiac disease. For me, it’s an outlet. It’s been a way to connect with people all over the world who also have celiac disease. I feel connected to a community I never knew existed.
This weekend you are running in the NYC marathon. When do you have time to train?
It’s all over the place. Some days I get up really early and run. I also have been known to run really late at night. I have a safe route through town, and I wear reflective gear and run at 10:00 p.m. It just depends on if I am working days or nights. I flip the training.
Have you thought about what crossing that finish line might feel like?
I think it’s going to be incredible. I am excited that my body healed enough that I finally was able to get to the point to run a marathon. It’s like I am running for everyone I know and have encountered with celiac disease. I just feel really honored to be able to do it.
(This interview has been edited for length and clarity.)
Susan Cohen is a regular contributor to Gluten-Free Living.
Jess I deeply empathize with you being ill for years undiagnosed with Celiac Disease. Thanks for sharing your experience. It was encouraging to see you recover and still live a normal life as far as possible.
Thanks
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like mastering more on this subject. If feasible, as you acquire experience,
would you mind updating your blog with much more information and facts? It is
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Having had rouble with my stomach for years uithings finally became so bad that it was 10 years and 7 doctors until the last doctor told me that I had about 3 mnths left to life but he did not know why I was dying only that all my internal organs wer shutting down. I went home ready to write out my will to my husbnd and 5 children. Now mos tof the doctrors tried to blame it on a FEMALE issue or menopauseor someof them blamed it on mental. I knew it was none of these but since I was dealing in an industry filled with male doctors this was back 20 years ago and there was nothing else I could do. I had gone to every specialist except the one that could have told me. I had these little blisters all over my butt, my knees, my elbows that were constantly popping open and I remember always carring a kleenes with me to with off the fluid whenever I bnet over off my knees.Finally my gastro rom about 6 months earlier caleled me and asked me to come in and I thought to go ahead and hear the same thing as I had for the last 6 years but this time he told me this “You have Celiac Disease” then he walked out of the room. Iyelled at him and said Wait” What do it Ddo? He told e to stay away from anything with wheat and I should start feeling fbetter and then he left.Now at that time I had neer heard of Celiac Disease nor what to do or where to get the food. My husband was out of town at the time and he called and he told me to hang in there for him and when he gets home he will help me find out what it is and what to do. Twenty years ago choices of gluten free were hard to find and tasted atrocious but I did find a load of bread and doubted I could do it after tasting that bread.That was twenty years ago and we now live in another state and I hadve had 9 doctors quit me because of what I have because they do notknow what it is here. They are so far behind times up here that it is pathetic. Now if I am contaminated with wheat I go straight into anaphylactic shock. The doctor here in town is telling everyone that if they want to seeif they have celiac Diosease to stay away from gluten and that way tou can tell is you hae CD or not. That is a total lioe but I am not telling him any different as he is the doctor but whenever I went into anaphylactic shock my husband who is my greaatest advocate of course was there and ther hospital asked him in the emergency room what they should do forme. He told them that since they did not want my kidneys to shut down they etter get some fluids in me along with some Phenergan.They did what he told them to do and them wrote him up on the hospital record as being a total My hospital chart is not filed with anything about me but about the way my husband acted to them. Since tht made no difference and I am sure they are faced with this The discriminatin toward anyone having Celiac Disease down here where I lie is atrocious. No one kows of of ha heard of it to the point of where are having to mvoe just for me to gt healt care, I can only pray I do not die before we get moved. The doctors here are so far behind time they seem not to care toknow about whwat I hae and my isit in generaly soent explaoining to the doctors what Celiac Diseeios.I amso sick right now and in sheer desperatioon because I know I willl get another doctor who will quit me. Down her her are three hopitals and isf you are backballed by one doctor you cannot see any of the others so there are none down her that will see me. .I went into anaphylactic shock over a mismarked box of gluten free dinner.. The box clearly stated “gluten free” but the ingredients states white flour so I became immediately ill and told my husbnad we hav enot time to tak emt ot the hospital and to call 922. When opened to door to the EMT’s in came 3 cops withe their guns drawn and cuffs out, They asked “Where is it” Mu husband asked them what they are talking about and they stated by saying “THE WEED????” The dispatcher told the EMT’s that I had eaten WEED instead of WHEAT and they were going to arrest me with vomit and diarrhea all over e instead of getting me tothe hospital.Then they were going to shoot our littel dogs. That is how bad things are down her, Since they have never heard of Celiac Diseae or Gluten Free I am in some real trouble here. I did have a doctor who gaave me some hysdrodocone when is the only time I felt normal again nit now tht is goneShe quit me over the phone and neer sent a script until I could find a doctor so I am in the real world of wothdrawal. Se just cut it off. For a Ceia who is a 70 years old woman so hardkly any chance of any drug addoct bit the hydrocodone did help me but no longer. Any other doctors want to give me an epidural which I was told that no celiac shoudl ever have an epidural and I did have one about 5 years ago and almost died from that spinal epidural. I hae 3 blown discs in my back according to my neurosurgeon out of Dallas who removed a huge cyst from my sacral spine but did nto want to do the disc surgery at the same time since the cyst was solarge he did not want to take the chance that something could go wrong. Now he is no longer coming to this state and no longer doing back surgeries and all the neurosurgeon referrlsals he has given me are MDVIP’s. Celiac Diseae, for me has been a shackle around me ankle here. I ended up in this state a I was caring for my parents who were oth dying at the same time and I was their only daughter. I was their only caregiver and right after my parents died I also lost my son. my best friend of 35 years, plus 5 members of my immediate family all within 12 months, had breast cancer surgery, then had another oral surgery and then my back surgery. Now my discs are comletely out and I can find no doctor who understands that I cannot do what they are sugesting I do and becaue of that they quit me.They state they do not know what Celiac Disease is nor do they know whatI should do excep thwat they want me to do which is not safe for me. I was the branch manager of the southwet Missouri and southeat Kansas gluten intolerance group for about 4 years but can no longer do that job as Ithat was strictly volunteer and I have no time for that any longer dud to my own medical isues. Down here the hospital has to refer you to a doctor and if they choose not to take you then you do nto see the doctor and they choose not to take me becaus eI hae a disease they have never heard of so they willnot schedule e with a doctor and if that doctor find out I hae ied to get into see him , which I did do, then II am black balled from their health systen. They hae three and I am blackballed from all three of them. That leaves me with no doctor and no pain medication whatsoever which did help spmewhat. Now I fall all the time, I try to walk but my legs are numb and I lost my balance and fall and not one will help me. One doctor toldme when having to cancel my appt because I was in the Emergency Room with mother when she wa adying that they will never see me again. I laughed and aid “sure” OK When can I ge teh Aappt rescheduked? Shetold me never. She aid that they will never seeme again for the ret of my eternal lifetine and never to call them aain. I was totally floored. No Celiac Disease patient anywhere in the USA should be treated the way I have been treated and I was never balanced out and got on a schedule of proper regulation f all my body as I should hae been but everyone just turned their back on me and one can el I am slowly going downhill. I a sad. I am disappointed and I do not know where to go for help.I worked for an oncologist at MD Anderson with cancer patients for 6 years and I loved my job and I do know that this is not the way to treat patients, Had we done anything like this we would have been fired. I used to spend my time going across the stereet andtalking and sitting with my cancer patients and buying them a alt or something they wer able to eat ust to get them to eat something. I loved my job and I cannot believe that things have changed to be so bad that people will not longer helpo another person or care about them such as where I live, The police department has bmade me into a freak by laughing at me over what they di and what I have. I am glad to knowt that I am the butt of their ignorance ad I make them laugh. No one was ever reprimanded over what they did to me nor was I or did I ever receive an apology over what they di from this coutnty.Sinxce the EMT was an AIr Force medic and full wel knew what I had and could not get to me because the cops were blocking him he went outside and told the sherriff to get this cop out of y house so he could get me to the hospital. Thyen he said when he got me into th anbulance “Let’s get you out of here baby” but by then my veins wee blown due to vomiting so much I was dry. Wwhat I am going through right now is sad and pathetic. I hurt and hurt and no one will help e because I live in a little one horse town where the doctors are uneducated about what Celiac Disease is or what to do.My opinion is that Celiacs just plain and siplu hurt. We have an autoimune disease and that makes us susceptible for anything else tht may be going around and Celiacs are at rick for so many other diseases such as fibromyalgia, muscle cramps, with constant intestinal isues along with diarrheaplus our healing time takes much longer than that of a normal person, Eatig wheat to us is like eating Drano to a normal person, Every single day it is what are we going to have for breakfast, lunch or dinner that is safe and these days fast and you cannot be a celiac and eat fast food. Thre was a place in Overland Park Kansas the other day where they served burgers and fries that were gluten free but it costs me over $8.00 for a burger and $4.00 for fries. It was delicious but it should have een. Look at how many people other than me who cannot afford to eat that kind o9f food due to the price. Why is it that we only get half the food that other people get yet we pay the full price? We do not get the bread, the gravy, hald the time the salad and most of the time the meat so we get half the food but pay the full price for what my husband sitting ext tome is eating?
Mostly why can’t the pain management doctors just see the fact the we have Celiac Disease and know that we of all people are in need of a pain pill because we just simply hurt. Why can they not help us or udderstand us. Why is it that IU a the one who has to check out all the fluids and everything they are operating n me with when they do not know and cannt check it themselves? I am frustrated, sick and need help but to no avail. I ended up aftera ll this with permanent nerve damage but the doctors seem not to realize how I could have nerve damage when there are no huge scars. my pain doctor told me tht oxy would help me best but I told herNo because I was afraid. She told me to check it out and see if it was safe and if it was ro rake one of my husband’s oxy’s and if it worked she would switch me. I did look and the pharmceutical compacey showed it to be gluten safe so I tookl 2 of them ad it made e sicker tan a dog so then aterI though that maybe it was because I took the two instead of the one and I then took onlu one and it w not what the number I took but the pills listed are not gluten safe. I immediately got in touch with my doctor and told her that what she told me to do made me very sick and they are not gluten safe Now I did everything she told e to do and she fired me as a patient because she denied telling me to do that but my husband was sitting in the room when she told me to do this and he heard what she said. Now my testing the lat in January came back just fine which showed I was taking nothing but what she gave me but then one year ago she accused me taking a percoset and I have never taken a percoset in my life, She also fired my husband as a patient because she said he did not lock his pills up and away from me?????? That was ridiculous because I know of no husband or wife who locks their pills up fro their spouse and I have never been accused or charged with anything so her she said he was aiding and abetting??????? At our age why should we lock our pills up fro one another because my husband has a heart issue and diabetes and I go into anaphylactic shock so if that hospital needs to see our pills then why would we keep them locked up. No one comes to see us or visits us except my husband and myself. What??? For doing what she told me to do??? e did nothing wrong. You charge and abet a criminal and I a no criminal. She then tells us both tht we are to tell no one not even the emergency room that she has given us any pain pills and to lie to them if they say we have used them but never admit to using pain pills because you are treated different by the hospital staff and are discriminated against. I am a 70 year old woman with Celiac Disease. I do not lie to people because I have done nothing wrong to lit and if any doctor teats a patient different due to that reason then let it be. This comes from a doctor whose husband was charged with 4 counts of illegal drug possession and dispensing 10 years ago and he is in her office without a license doing exams on her patients and on me too and he has access to her prescription pads? I know all this and this is why she wanted to get rid of me and not too long before that her two office staff people called me and told me why did I not answer my phone when they called me? They told me the next time they I better pick up one of my phones, I was floored they would say this and then the office manager when I told him his timing stinks because I have 4 blown discs and he told me all I can do is stay on pills or marijuana????? because to allow them to do surgery on me at my age would be like putting wood screws in styrofoam. No patient should be subjected to this kind of thing.I was accused from doing what she told me to do and she flipped it back on me and left me without anything to take.. She made accusations that were not true and said things that were horrendous, Point being here that testing for celiacs are not always right unless the lab is doing the testing is removing the contaminants from our blood before they do the screening.. We were found out we had celiac disease by the IGG and IGA and I have the understanding from Doctor Fine that unless those contaminants are removed from the bloodwork first the will get a false positive. I am extremely upset that there are no doctors who are not understand Celiac Disease and we have to go in armed to the hilt with information stating what we can do or allow them to do and pay them for what we know. At this time I am just in great pain and have no doctor with enough understanding to help me instead of constantly being accused of something we never did which has happened plenty. Maybe going back to another state would be the best thing I can do or finding doctors who specialize in Celiac Disease and there are no lists of this anywhere,. We are in our own in so far as finding a doctor who knows anything. about Celiac Disease or caring if a patient has the proper care for any disease. I hurt something horrible and have not a doctor who understands what I am going through nor do they care, Celiacs just hurt worse than the normal person.
Celiac Disease is the condition that requires avoiding gluten to manage symptoms is celiac disease. Celiac disease is an autoimmune condition that prevents proper nutrient absorption and the digestion of gluten. According to everydayhealth.com when people diagnosed with celiac are exposed to gluten — a binding protein common in grains but also in makeup products — the immune system malfunctions and attacks the walls of the small intestine, which is responsible for absorbing nutrients from food.