Finally Diagnosed

I've wavered between being excited that I finally know what's wrong with me to being totally ticked off at my previous doctors for not helping me before I got to the point that I was praying to die everyday. On February 23, 2004 I found out that I have Celiac Disease. That was 15 days after my 45th birthday. I've been sick most of my life. I've gone to many, many doctors in five different states (Kentucky, Florida, Tennessee, Georgia & Louisiana). I have lost track of their names otherwise I would send this article to them. I've been told by these different doctor various versions of "Go home; there is nothing wrong with you." I was even sent to a psychologist at one point (I was twenty at the time). Who talked to me for about ten minutes, then leaned over the desk and said, "You really don't need to be here do you, honey?" To which I replied, "No, but if you can take away my pain, I will talk to you daily." I was sent home. I should glow in the dark from all the x-rays, cat-scans and MRIs. Nothing was ever found. I've had blood test after blood test done...all came back as nothing was wrong. None of those doctors thought outside the box. They just thought that I was a hypochondriac.

By December 2003, I knew that I was dying. I felt relief. I had asked God several times in the previous months to either help me feel better or let me die. I started asking nicely, but ended up demanding death today. Then suddenly I knew that I had to change doctors once again. At the end of January of 2004 I had an appointment with a new doctor, one who was a medical doctor and a holistic doctor. I had had it with regular medical doctors. This doctor actually listened to me. She also cared. She wrote down EVERYTHING I said. She asked questions. She listened to the answers. She ordered blood tests that weren't the normal thyroid, sugar and pregnancy tests. I couldn't handle the attention I was getting from her - I actually started crying. Let me say, I'm not a crier. I could rather have my fingernails pulled out one by one than cry, but that day in her office I saw that she cared and it made me cry.

When the tests came back, I didn't hear the familiar "There's nothing wrong with you." No, what I heard the nurse practicner say was "I'm sorry; but the doctor found 11 problems." She apologized for finding so many things wrong with me. I started laughing - giggling in fact. I thought finally, someone found out what was wrong with me. Once I got over my giggling fit, I reassured her that it was okay that she found so many things wrong with me. I had things wrong with me that I didn't know existed. It was so overwhelming that I couldn't take it all in. The practical nurse wrote down all the problems and I looked them up later to make sure I understood what was going on. Side note: the doctor didn't see me that day because she was ill herself; two and half years later she had to close her practice due her illness. She too wasn't properly diagnosed until it was too late.

It took 45 years to be diagnosed with a disease I had as a baby. After watching me vomit up the baby formula over and over again, my mother went against conventional wisdom and fed me the regular milk that was in the refrigerator. I thrived once I started drinking milk. My inability to digest formula was so bad that someone had to be on baby vomit alert at all times. Even my 5 year old cousin was roped into carefully watching me in case I drowned in my own vomit before my mother could get back into the room. .

My case isn't unusual. The average time it takes to diagnose most people with Celiac Disease is 11 years. What a medical nightmare. It's a simple blood test, why isn't it part of the standard tests doctors do for each patient? Actually the first step is a blood test; the next step is a bioscopy of your intestines.

Why did it take so long with me? I looked healthy. I had healthy skin tones (until the latter part of 2003), I wasn't undernourished looking (obese in fact) and I managed to get to work (never mind I quit dating, didn't have the energy to clean my house & car and stopped doing anything extra that didn't evolve work). I looked fine. I've come to call it my genetic defect: the sicker I am the better I look. Never mind, I couldn't eat, had trouble sleeping, and in so much pain at times I couldn't get out of bed, or I hardly had any energy and I gained weight like I was eating cake and ice cream six times a day when I was barely keeping down 200 calories a day. I couldn't eat most of the time. When I did eat, I usually threw up it up with 20 minutes of eating. I hadn't been able to find a doctor who believed me. At one point I had been sent to a dietitian by my doctor, who took one look at me and "said we are going to make some changes in your diet." He didn't even ask "What have you been eating?" or How much have you been eating?" He just assumed someone as big and fat as me had to be eating like a crazy fiend. The next time I came in I had a food diary and I brought in a storage bowl of leftover food from the day before. And told him I had a witness, my mother had been visiting me for a few weeks at that point. The bowl held 12 oz. and I had eaten on it all day the day before and still 1/2 of the food was still in the bowl. I just couldn't eat. His diagnosis, "We need to get you eating more." Well, duh.

All of my adult life I had been hearing from doctors, "There's nothing wrong with you." I got so tired of hearing that. So I only went in because I was vomiting and/or had diarrhea, Then I heard "You have a virus" (unnamed of course); other times I would hear "You have food poisoning." And most of the time there was nothing they could do for me so I stopped going to the doctor for that. It was much better on my wallet not to keep going to the doctor's for something they couldn't do anything about. I would go if my sinuses were so bad that my teeth hurt. For that I would get antibiotics. I couldn't get help for all the pain, but let my nose run and I could get help.

Today, I'm much better. I only miss a day or two a month from work versus a day a two a week. Although, I'm very limited in what I can eat, I'm able to eat more. I still am overweight, but I am able to get around much better. This spring I have gotten to work in my garden a little at a time. Usually, I last about 15 minutes before I have to go inside and rest. Last year I wasn't able to work out there at all. Little by little I'm am improving.

To learn more about Celiac Disease I've listed below several excellent articles written by various CPs.

Barbara Lee Norris
Celiac Disease Diagnosis: Gluten-Free Living: Tips for Starting a Gluten-free Lifestyle
Celiac Disease: Is Kissing Hazardous to Your Health? Kissing Can Make You Sick!

Iain McMullin
Celiac Disease 101: What is It? Wheat Gluten Allergy and How to Live with It

Amy Ulibarri
Children with Celiac Disease - Malnutrition Waiting to Happen

WD
Online Resources and Support for Celiac Disease