National Celiac Awareness Day... My Story!

Today is National Celiac Awareness Day. It really has made me sit and think back to 17 years ago when I got sick. It made me think about my diagnosis and how few people probably know any of this about me. So, here is my story.....


It was my freshman year in high school, spring semester. The year was 1995. My sister was a senior and was driving me to school. I thought I was so cool! I played the alto saxophone that fall in the marching band and had started playing the baritone saxophone that spring for the concert season. I tried out for Softball and made the high school team. I worked it out with the band directors and the Softball coach to do both. I was seriously on top of the world! I was so excited to be able to do the TWO things I loved the most. One night during a softball game my parents came to the dugout. They asked me if I was okay. I said I was alright, but I felt like I was running in slow motion between the bases. Both my Mom and Dad said, "Amy, you WERE running in slow motion!" I will never forget how sluggish and gross I felt. The following day I stayed home from school sick. My Mom made me a doctor's appointment with our pediatrician, Dr Rahman. (Oh how I miss her! She was also our boys doctor before we moved!) I had a killer sore throat. I was spraying my throat with chloraseptic, which is something I do not like at all. She did some blood work and said I had mono. BLECH. I had not even had my first kiss and here I had the "kissing disease." Thank you softball and probably drinking after someone!


Fast forward a couple of weeks. I had been told I should start feeling better, but I did not AT ALL. I was still so lethargic and was starting to drop weight like crazy. I remember very vividly, I started off weighing 147 pounds. Within just a couple of weeks I weighed about 120. My sister knew my clothes were falling off, and I will never forget she went and surprised me with a new outfit. I still have it. A mauve colored shirt and an elastic waist a-line knee length skirt that was sage green with little mauve flowers on it. I was starting to have horrible stomach cramps. Through Kristin's transplant team my Mom got in touch with the head of pediatric gastroenterology at Texas Children's, Dr. Klish. I started seeing him. At this point I was still losing weight very rapidly. He put me on a feeding tube (NG tube) which is inserted in your nose and goes into your stomach. Through that they pumped in Ensure. I was hospitalized and they started running tests. At this point I had been eating very little and now my only nutrition was Ensure. With the occassional cherry limeade slush with a good friend! All blood tests for Celiac Disease and anything else they could test for came back negative. But I was showing signs of severe arthritis in all joints, my feet were quickly shrinking in size, I shrunk an inch in overall height and was losing my hair at an alarming rate. I could not concentrate. My memory was very poor and all I wanted to do was still sleep. After testing me for osteoporosis, they said I was losing bone mass too. At this point it had been months, with two separate feeding tubes. I was out of school at this point, being homeschooled by a really neat lady the school district sent to my house. Desperately wanting to stay in touch with friends and really feeling sad.


School pictures were quickly approaching, so after a talk with Dr Klish we scheduled the removal of the second feeding tube for the morning of pictures. I vaguely remember my Mom helping me wash my hair that morning, then my Dad taking me to school for pictures. At that point I realized how important it was to be around friends. I had my freshman class picture taken, then headed right back to the medical center to have my third feeding tube put in. We then decided I should maybe try to go to school half days. The fall semester came around and I was still not feeling well. A lot of this is hazy, because my memory did not ever really come back from the time I was so malnourished. Our band directors let me march, even though I could not make it to all practices, games etc. The posters, cards, and calls from all the band members just truly made every day amazing. I marched in every single game. I was homeschooled, but would occasionally try to do half days at school (which usually included band!) as often as I had energy. A lot of that time I had a feeding tube. It was so hard to be seen with it. It was a very vain feeling, but a lot of people did not know what was going on. One kid asked me in Geometry "Are you dyslexic" I know he meant to ask "Are you anorexic" but as I sat munching on my counted out amount of jelly belly jelly beans trying to keep my caloric intake up on days I was unhooked from the feeding pump I am sure I was a sight. But to me, sitting in that classroom amongst the peers I had gone to school with since kindergarten was absolutely theraputic.


During this time I had multiple cat scans, mri's, radioactive isotope tests, six endoscopies, and one horrible test where I had to eat dry chicken and they put three long tubes down my throat that had sensors and I had to sit completely still for hours while they tracked the movement of my food. The only movie they had was Dumb and Dumber. Yikes! None of these tests showed the doctors anything. They ruled out cancer. They ruled out rheumatoid arthritis. They ruled out Celiac Disease. They ruled out Lupus. What was left?


At this point I was going on Tuesdays for weekly weight checks. Slowly the weight kept creeping down til I was about 90 pounds at 5 foot 7. At this point my heart started skipping beats and I had to wear a halter monitor. They called it tachycardia.


My doctor was amazing. I will always love Dr. Klish. Seeing him each week made me happy. My Mom would drive me to him and we would try anything we could to see if I could feel better. Then he threw up his hands and referred us to Mayo Clinic in Rochester Minnesota.


In the next couple of years I went to Mayo Clinic a total of three times. This first time though was the most pivotal. We got to town and checked in at the Ronald McDonald house. The next morning we were scheduled for an appointment. We arrived with all of my boxes of medical records. A team of doctors sat down with those records and began pouring through them. I was called back to see my doctor, Dr. Camilleri. He looked at us and said "She has Celiac Disease." We were shocked. I had been blood tested, stool tested, endescoped. How could I have Celiac? He said "I am pretty certain she has Celiac, but has been on a gluten free diet because of the feeding tubes, therefore her tests came out negative. I think she has another problem which is also masking the symptoms of the Celiac making it even harder to diagnose." WHAT?! So he started dictating in his little recorder then made me 10 or more appointments for the next week.


The tests were pretty wild. One was called a Sweat Test. I was covered from head to toe in a yellow/orange powder. They then put me in an "oven" and "baked" me for over an hour, trying to raise my temperature and get me to sweat. Anywhere that I did sweat would turn purple and they could see how my nervous system was working. I had one tiny ring of sweat around my navel and they aborted the test after over an hour. Another test was called a Radioactive Isotope study. They mixed radiactive isotopes with eggs and had me eat them. Then over the next couple of hours I would return and they would take pictures of my intestines. They learned from this that the eggs were still sitting inside my stomach after many hours of walking. Meaning my instestines were basically not working at all.


Towards the end of the week I had a diagnosis. First, I have Celiac Disease. We were given a small pamphlet on the gluten free diet and were told I needed to adhere to this for life. Second, we were told I had something that only one other person had a recorded diagnoses of... Selective Cholonergic Dysautonomia following accute infectious mononucleosis. Oh the mono, THANKS a lot! The other person to have this Selective Cholonergic Dysautonomia had also seen Dr. Camilleri after many years of problems. My diagnosis and theirs were nearly identical. Basically, the sweat glands, the gastroentestinal tract, and many other parts of the body fail to work. Here is the link for the published article from 1991.


After making many friendships from our week at Ronald McDonald we returned back to Texas. My Mom dove into a gluten free support group (without the help of the internet!) and all the books she could find. After many yucky pastas, cereals, etc she found a good knack at cooking gluten free! Within the next few months my stomach slowly felt better! Within the next few years, my problems from the Dysautonomia became better and after two more visits to Mayo Clinic my Senior year in high school I was back to feeling great! You can just say, the Celiac Disease diagnosis saved my life! It is now a huge blessing. With HEB having a gluten free aisle, General Mills having a gluten free facility to make chex, many restaurants having gluten free menus, a husband that does not mind having a gluten free home (saying he loves me more than food!) and many brands willingly labeling their foods as gluten free (for example Ore Ida!) life has become so easy and instead of Celiac being difficult it is just a way of life!