My name is Nora. I am 48 and I have recently been diagnosed with celiac disease. All my life I have been suffering from painful and progressive symptoms. Though I tried to get help, no doctor or specialist was ever able to put the pieces of the puzzle together. It was a mystery. Instead, I was dismissed as a hypochondriac. I have also watched helplessly as my beautiful 13-year-old daughter, Hannabell, suffered over the years.
Here is my health story: I was a frail thin child, never liked to eat much, always got stomachaches, and often felt nauseous. I got tired of complaining and eventually got accustomed to the pain. As I grew up, pain, nausea, constipation and flatulence were normal for me.
As a young adult, a roommate complained about the flatulence and suggested that I may be lactose intolerant. I removed milk from my diet. That helped the flatulence and some but not all of the pain.
When I was married at 24, my husband was not allowed to touch my painful stomach. Sex would sometimes be painful. At 28, I became anorexic because not eating actually made me feel physically better. I did not have body image dismorphia, common to young women with anorexia. I also began to suffer from depression, another common symptom of celiac disease. My depression and health problems became debilitating. These problems brought me to some very low points in my life. I forged ahead, trying to work on my mental and physical health.
In spite of my best efforts, eating healthy and doing exercise, nothing helped. At about the age of 43, I began to have additional symptoms. I would faint, have severe fatigue, and I developed patches of itchy psoriasis on my skin. Sometimes I would feel itchy all over. Again, I went to a slew of doctors and had numerous tests that always came up negative. Again, I gave up.
This past year, things got progressively worse. In addition to all my other symptoms, I began to have more severe nausea and vomiting, headaches, coupled with a phantom itchy rash that would appear and disappear in the same place on my hands, wrist, and the backs of my legs and neck into my hairline. The rash was funny, bumpy but sometimes not very pronounced. It felt extremely itchy in spite of its benign appearance. My fiancé, Tom, was very concerned, insisting I go to the doctor. I said, “They’re never going to find anything, they never do! I will just end up looking crazy.”
I changed doctors and Tom began to attend my appointments. We visited my new doctor probably 5 times in a month. I joked “I should get a volume discount.” The symptoms are so common, nausea, fatigue, dizziness, fainting, stomach pain, severe headache, all easily confused as just a stomach flu or irritable bowl. The symptoms just never go away. I have been told I need to just stand up slowly, and use salt liberally. I felt like I was over reacting, or just crazy.
I went back to my doctor again explaining that I have been throwing up again, I am dehydrated no matter how much I seem to drink. I am tired, I feel terrible. I just can’t get out of bed; I am too fatigued to do any work today. I get dizzy every time I stand up. I implored “Doctor, please help me. I eat healthy; there is nothing else I can do to help my health.” He took some time and studied my chart, looking back at all my visits. “You know,” I added. “I also have a rash, you can’t see it now because it comes and goes but it itches like heck when it’s active.” Then it happened. He said, “I’m going to test you for celiac disease.” Amazingly, it was positive.
I changed my diet, and within days I noticed an improvement. I am getting better every day, but I know it is going to take a lot of time to reverse 47 years of damage. I had never heard of celiac disease! If I had, I could have changed my life, and my daughter’s. We are both on the road to recovery now.