Superman’s Celiac Story…the early years:
Four pieces of wheat toast and a bowl of hot cereal…that was my breakfast every morning for most of my childhood. Occasionally, my parents would splurge and make whole wheat pancakes. Grains were my staple food and ice-cream was my weakness. Then at age 16, my life began to change. One day my right side began to hurt. The doctor said it was just a stomach ache and to go home. Turns out it was my appendix. It burst. I went to the E.R. and spent the next week attempting to recover. The surgeon later told me that the surgery was a close call. He said he had to pour liquid antibiotics into my gut because the infection was deathly bad. I was down to 115 pounds at 6ft tall and couldn’t gain weight. Celiac disease was eating me away without me even knowing it. Here’s a picture of me at the beach back when I was feeling my worst (try not to be distracted by my buff, bronzed stature):
Digestion pain, can’t sleep, do I have cancer?
My digestion was never the same…cramping, dull pain with malabsorption issues. As the years went on, the cramping continued. Fast forward to adulthood when I married my beautiful wife. The dull pain began to turn into moderate pain and I just couldn’t seem to gain weight. I also noticed that my mind wasn’t working properly. It felt more and more like my mind was controlling me rather than me controlling my mind. I really don’t know how to explain it, but it was as if somebody else had the remote control to my mind and I had to fight to stay sane. My mind seemed to stay focused on my bad health, my constant sickness, my weakness. Adding to the ailments, I also felt like I was vibrating. I know it sounds weird, but it seemed to reverberate from the core of my bones. I’ve heard others describe the sensation as their blood itching.
I couldn’t sleep. Just before falling into a deep sleep my mind would wake me up with a jolt. It was as if I was in some torturous routine where I was immeasurably tired, but powerless to sleep. With a shock of adrenaline to my system I would pounce back up in bed. At this point, usually some ailment would overcome my thoughts and I would spend the next hour or two looking up ways to fix it. It was a constant struggle to stay rational without sleep and in constant pain. My doctor had ordered numerous blood tests including one to see if I had Cancer. The numbers came back with the Neutrophils too low and the Lymphocytes too high. My white blood cell count was depleted from fighting so long and hard and this combination meant a likelihood of Cancer. I was dying.
Celiac pain carved at the depths of my soul.
I remember weeping daily on my way to work just begging God to fix my body. By this point, I was married to my wife, had 5 kids and I was questioning my faith. We had adopted 4 of our kids and I was trying to be the best dad and husband I could be. But it seemed like I was battling God rather than sensing His help. That is, at every turn it seemed the world was just bringing me more pain and suffering. I tried to spend some daily quiet time with the Almighty, but I couldn’t even focus enough to read His Word. My mind was completely shot. I felt neurotic. And tired. And the pain was now intense. My intestines felt completely shredded and something needed to change. I kept losing weight, getting weaker and my body was disintegrating.
Doctors…they did NOTHING for me!
I had gone to Kaiser doctors, Sutter doctors, U.C. Davis doctors, and Emergency Room doctors. They kept prescribing antibiotics, more antibiotics, and more antibiotics. Then the doctors said there must not be anything wrong with me due to the fact that the antibiotics weren’t helping. They never tried to discover what was wrong with me, they just tried to cover up the symptoms…but at this time in my life I believed doctors to be right. Afterall, they went to school for this. I began to think maybe I really was just crazy. Maybe there wasn’t anything wrong with me. At this point, doctor’s orders were: Eat more Fiber, eat healthy whole wheat foods to gain weight. Take antibiotics even though they aren’t working.
I called a family meeting and told my kids that daddy was dying. I told my wife that her husband wasn’t going to make it. I’d fought the fight, but I just couldn’t fight any longer. It hurt. It pained me to look into my kids eyes and know that they would grow up without a father. How would my wife raise 5 kids without a spouse? Would my kids ever forgive me for dying so early in their lives? Would they even remember me and would they turn out horribly because of it? I showed my wife how to pay the bills. I went through the process of delegating all my responsibilities. We decided that I would give the doctor one more chance to heal me. I made an appointment for that day after work and told my wife that I wouldn’t be coming back. Either the doctor heals me today or I’m headed to the hospital afterwards to die. And I meant it. Literally.
You can read Part 2 HERE.
Your story sounds extremely familiar. I too had a long list of health problems that I thought was going to kill me. The doctors all took the same approach to the issues: eat fiber rich diet, take medications, take toxic amount of vitamins to fix malnutrition, ect.. I have a family as well. Furthermore, I went through almost everything you described so far and then some. Now that I know how celiacs affects people, it’s hard to believe that so many doctors are clueless when their patients come to them with a huge list of symptoms that point to autoimmune disease. It’s scary the first thing most doctors do is prescribe medications to mask the problem. If that don’t work they throw their arms in the air and say well we gave it a shot, here are some anti depressants have a nice life. In my option there needs to be a raised level of aware ness for autoimmune disease in general, as well as raised awareness of celiacs. In my case and as it sounds in your case too the symptoms seamed to be classic signs of autoimmune disease, but doctors tend to act as if the symptoms are either unrelated to each other or not real. It took five years before a doctor even considered that my problems were related to an autoimmune disease. I was tested for ciliacs a few times and the results came back negative; however, I was already playing with my diet, which could have affected the test. Finally I decided to eat every day for six months straight because I needed an answer and My ANA levels spiked from what ive read is not typical for ANA’s to go up with ciliacs, but is a sign of autoimmune disease. I was able to get them to retest for ciliacs disease and sure enough came back positive. It really bothers me that most doctors will try to prescribe the problem away without even looking for the cause of the problem. If my celiacs disease had been a snake it would have bit them. Because of my experience with celiacs, I’m now studying medicine and hoping that I will be able to make a difference one day. I look forward to reading more of your story!
ray meltvedt says
yikes many! thatss sound horrible! when is part 2?
Life Made Full says
Part 2 is published now!