Living Fullfilled: Adapting to Life Gluten-Free Name: Maureen L. Ellis, Ph.D.

I am originating and authorizing Tina Turbin to share this story with you. Dr. Maureen Ellis

Maureen has generously offered to share her continued personal story. Check back for Part 2 or sign up for the RSS feed on this site on the right hand column. Read Part 1 now

Everyone has a story to tell and my journey toward living a healthy, gluten-free lifestyle is a unique story, one of which I hope will give other people hope for living a “ full” filled life after years of frustrations, tests, diagnosis and acceptance. From my personal experience, I can understand why someone would not feel fulfilled and would almost feel deprived being thrown into a situation where they can no longer eat the foods they have grown to love and share with their family and friends, but when the order was given for me to go gluten free, I was willing to do anything to feel better and bring a sense of normalcy and peace back into my life and that of my family. My name is Dr. Maureen Ellis, and I have Systemic Lupus Erythemtosus (SLE), which is a chronic autoimmune connective tissue disease that can affect any part of the body where the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage. Lupus has affected my central nervous system, gastrointestinal tract, biliary tract and pancreas. Please join me in my adaptation to a “full” filling gluten-free lifestyle.

After my children were born I decided to get my master’s degree. I fell in love with higher education and decided to pursue my Ph.D. I successfully defended my dissertation the month before I turned 41 and started my first tenure-track position two months later at a research institution. I felt like everything in my life had fallen into place and it was finally time to enjoy the fruits of my labor. We had a beautiful home, two great kids, my husband loved his job and we were starting to make our new environment feel like home. In April 2005, I went in for my annual exam and my doctor found a lump in my left breast. Without delay I had numerous tests and ended up in a surgeon’s office who immediately scheduled me for a lumpectomy to remove the tumor. He was 95% sure that my lump was cancerous. Believe it or not, the tumor was benign, but something went terribly wrong during surgery; it appeared as if my computer had decided not to reboot because when I woke up on May 7, 2005, nothing in my life would ever be the same. Now that I have been fully diagnosed, the doctors believe that Lupus had been a sleeping giant waiting to be woken up and we have been able to go through my childhood and realize that the symptoms of gluten intolerance and GI disorders have been a part of my life since I was a small child.

Following the lumpectomy, I couldn’t keep food down, had constant diarrhea and eventually became dehydrated so I was admitted back into the hospital. They hooked me up to an IV and some good drugs then sent me home to recuperate, only to find myself readmitted twice in the next couple of weeks. The doctors in the hospital said it was time to get to a specialist that there was definitely something strange going on inside. One doctor mentioned Crones Disease and Colitis so next step was making an appointment with a gastroenterologist. I went in expecting to get help and start feeling better soon as I was teaching summer school and it was tough when I didn’t have any energy. Right away he was positive it was Crones Disease, which is an inflammatory bowel disease or Celiac Sprue, which is an autoimmune disorder of the small intestine causing a mal-absorption syndrome from the ingestion of gluten-containing foods . I had the usual battery of tests like a sigmoidoscopy, upper GI, several blood and stool tests, all of which came back negative, except I had exceptionally fast transit and was trans-absorbing nutrients, which meant that my food was moving through my GI tract so fast that I wasn’t able to absorb any of the nutrients so I was suffering from malnutrition. Since I was continuing to lose weight from the chronic diarrhea and I was losing my appetite for food, I started pushing the doctor for answers, especially since we were already into early August and I wanted to be well before the new school year started. Looking back now, that was such an unrealistic goal as it took four years to get a complete diagnosis. In the meantime, the doctor suggested we start eliminating lactose to see if that helped and sadly enough, getting rid of my morning latte did help some with the gas and bloating but diarrhea was still running my life. I knew that as soon as I ate, within 20 minutes I would head straight to the bathroom with severe cramping and watery diarrhea. My life was literally revolving around what I ate, when I ate and then my distance to a bathroom. I started to feel isolated and was afraid to go out in public for fear there wouldn’t be a bathroom close enough when the trots came on. I had severe debilitating pain in my upper-right quadrant to the point I felt like I was being stabbed by a knife. One night I lay in bed planning my funeral because I was afraid to wake my husband and tell him I thought I was dying.

About a week before the fall semester began I prepared and had my colonoscopy and an endoscopy. And yes its true, the prep is far worse than the actual procedure because I remember nothing. The problem was that I never recovered and started becoming very, very sick. The results were basically inconclusive for everything. He took several biopsies and said he could rule out Crones for now, but it could be Celiac, but for now he would go with Irritable Bowel Syndrome (IBS). When I woke up, I about went insane because I knew in my heart of hearts this was something more serious than IBS. This was not stress related or because of something I ate, but something had gone terribly wrong with that surgery and I needed someone who would get to the bottom of it. I felt very alone and scared. Unfortunately at this point I didn’t have any energy to fight this doctor. By the end of the weekend, I was too weak to get out of bed so my husband called the doctor’s office and thankfully, he was on vacation. This gave my husband the idea to call our former landlord who was a Gastroenterologist. He explained what was going on and said, “Maureen is dying can you do anything for her”. My new doctor rode in on his white horse with his white hat on and very gently took over my case. Here is my first tip to anyone going through a difficult diagnosis: go with your instincts and find a doctor who you trust, who is kind, compassionate and willing to listen to you as a person. Switching doctors saved my life – I have no doubt in my mind.

My new doctor put me on some meds to get me through the weekend and I went in to see him the next Monday.  After looking at my medical history and test results, he said, I think I know what’s wrong with you but you’re going to have to trust me on this. And this is the moment when my journey changed. The first step was to start pain killers for the abdominal pain, sleeping pills so I could get a decent night’s sleep because as he said, you can fight the pain when you are rested, and we started in with a new battery of tests to determine gallbladder function. After a trip to the ER and several tests later, in October my gallbladder became infected and inflamed, which had to be removed. After surgery I didn’t seem to improve and continued to decline in health. By this time my diet consisted of saltine crackers, soup and oatmeal. The doctor suspected I had developed Sphincter of Oddi Dysfunction, which affects the valves in the biliary tract. The sphincter of oddi is a muscular valve that controls the flow of bile and pancreatic juice through the bile tract (area from the liver, gallbladder and pancreas to the stomach) and flows into the first part of the small intestine. Sphincter of Oddi Dysfunction (SOD) happens when that valve doesn’t relax and causes severe spasms. This causes the bile juices to back up and causes episodes of severe abdominal pain.

Typically, doctors wait 90 days after gallbladder removal to perform an ERCP, which is a type of endoscopy, to measure sphincter pressure. Unfortunately, my body didn’t wait that long and the sphincter valve ruptured on its own sending me to the ER in excruciating pain. The doctor explained that that valve is held together with what appears to be rubber bands and I was feeling each rubber band snapping free. The doctor performed emergency surgery to repair the sphincter valve and pancreatic valve. Recovery went very slowly from the SOD surgery and the upper-right quadrant pain was still present, although not as bad as it was before the surgery. My gastrointestinal symptoms continued on through the spring and in early summer of 2006, my doctor repeated the ERCP to clean out scar tissue he thought was causing the continued pain. Since my GI symptoms failed to improve, he decided to do the capsule endoscopy to test for celiac damage. This procedure required me to swallow what looked like a capsule. There was a tiny camera implanted in the capsule so when I digested it, it took pictures of my digestive system. I also wore a contraption all day that logged the pictures being taken inside of me. I am a technology geek and I have to admit, I thought it was pretty high-tech and very interesting. Although the blood tests did not come back positive, the capsule endoscopy did indicate that I probably did have Celiac Disease or at least I had intestinal damage to support that diagnosis so he determined the best course of action would be to remove all gluten from my diet. Through elimination, we also determined it was best to eliminate lactose and egg yolks as well. Following the gallbladder surgery and Sphincter of Oddi surgery I have not been able to process much fat and by this time I had pretty much eliminated most meat and nuts because they caused too much pain and distress and my body just refused to digest them. With my new diet in hand; a trip or two to a registered dietitian, in August 2006 I began my journey into living a fulfilled life without gluten, lactose, egg yolks, raw fruits and vegetables along with a low-fat diet.

To be continued….

Dr. Maureen Ellis, Ph.D.
Business and Information Technologies Education Department
East Carolina University

Thank you Mareen. Maureen has generously offered to share her continued story as time progresses. Check back for Part 3. Read Part 1 now

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