Celiac Disease Forum - Moderator Intro-my Expereince

I have had stomach aches longer than I can remember. When I was a little girl my father called me “tapeworm” because I was always eating and I was always hungry. I was a small child, and never really gained a lot of weight. I have always been short. The only time my stomach didn’t hurt was when I was eating.

When I was in 8th grade, I was in the nurses’ office almost daily because of stomach upset. I had a constant feeling of being nauseated. I was a swimmer, and I had “dry patches” behind my knees and on my elbows all the time, and nothing I used would get rid of them. This problem would wax and wane, getting better and more severe off and on. I went to many doctors about my stomach.

When I was in high school the doctor thought I had GERD from too much stress. He prescribed Ranitidine for me, which never really did anything. I had my appendix out when I was 18. I got married when I was 20, and there is a fabulous picture of me after my husband stuffed cake in my mouth and I almost threw up. I lost about 30 pounds after getting married, and began to lose my hair as well. I was thin, pale, and began buying elastic waist pants because I would become so bloated after eating. I lived on Saltine crackers and 7-up.

During college I was very depressed and drank a lot-a lot-because I felt so terrible anyway. I saw a shrink who conveniently blamed my parents, and then I just stopped going to see him because I cried the second I stepped into his dank hole of an office. I stopped taking my medication, because it didn’t really help anyway. I saw my family doctor who went into a 30 minute diatribe about irritable bowel syndrome. He said I could have Celiac disease, but it was so rare that he didn’t think it was possible. This was wholly unhelpful.

I got pregnant with my first child in 2000, and I really felt better than I had in my whole life. I had a fairly uncomplicated pregnancy, gained 85 pounds, and had a baby girl. After about 6 months, I started feeling bad again.

We had a huge snowstorm in 2001 which caved in the roof of my house, so we had to relocate for a while during the reconstructions. We stayed with neighbors, and I made a lot of quick frozen food so I wouldn’t be in the way, and since we are vegetarians, most of it was made with wheat gluten. I was so sick and so tired all the time that people thought I was either faking it or I was crazy. I had the most awful diarrhea and gas known to mankind. Then I lost weight-a lot of it. I went down to about 89 pounds.

I finally went to the doctor-again-and saw the nurse practicioner. She thought I had a parasite, so after many tests (one involving pooping in a paint can if you could believe it) She scratched her head and sent me to a gastro. He took one look at me, set me up for an endoscopy and colonoscopy, and promised me I would feel better by Christmas. Well, this was December 18th, so I was doubtful. He called me on the phone the next day and said “you have Celiac Disease”. I also had a positive blood test for Crohn’s, but have never had any lesions.