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Betty's Story

 
11/17/2008

Betty's Story


Looking back I probably suffered from Celiac Disease for 10 years before I was properly diagnosed. It started as just being tired, then I lost a tremendous amount of weight in a very short time. I went to my doctor who prescribed me with prilosec. I had been diagnosed at the age of 12 with acid reflux disease. So, naturally everything wrong with me must be related to the acid reflux. Right? As typical of CD I felt better for a little while but I still didn't gain any weight. I continued to have diarrhea but I could eat again. So many believed that I was well. Most thought as long as I'm eating then I must be well.

Unfortunately that was not the case. I became severely anemic. My doctor put me on iron pills to help my blood count but this only worsened my condition with now added severe stomach pain. The pain continued until I was bedridden and could barely move. I hadn't eaten anything in 3 days because of the pain. I was admitted to the hospital under a surgeon's care. He did an endoscopy (scope of the stomach and esophagus) and a colonoscopy (scope of the colon and large intestines). He found stomach ulcers. So naturally, again they found a symptom of celiac disease and passed it on as the real problem. I was given pain killers and told to relax. They mostly figured it was stress causing the problems.

After a few months I continued to loss weight and was still anemic. The surgeon then sent me to a hematologist who gave me iron infusions. This helped to bring my blood count up to a level where they could do some tests. Unfortunately, they did not think yet to do a test for celiac. I was given iron every week for 4 weeks but I was still losing weight and having severe diarrhea and lose of appetite.

Finally, the hematologist decided to do a test for celiac after I repeatedly told him I was not anorexic and after my mother, sister and father all had to tell him I was not anorexic. It came back that I had the celiac disease. Okay, it all should be over now right. Just stay on the gluten free diet and I will be fine.

Well, no one was available to tell me exactly what a gluten free diet meant. I was eating things that had gluten in them. Foods I did not even know to question. For example, soy sauce, barbeque sauce, etc. I became a little better and seemed fine until I had severe rectal bleeding and pain. I hadn't had a bowl movement in 2 weeks and hadn't eaten in 4 days. I was in college and refused to believe that I was sick again until I had stayed up all night in pain unable to sleep. That morning my mother took me to the ER and there we found the Fisherectame. It is a tear in the rectal that does not heal by itself.

They did surgery in which they found out that I was severely constipated. This I did not even know because the pain was so bad I thought all I was feeling was from the tear. After a few days in the hospital recovering I went back home. 2 days passed and I thought I was fine. Until one day I couldn't eat anything. I couldn't even lift my head or move from the bed. My father and sister took me to the ER and I was back in the hospital.

3 days this time and all they said was it was a reaction to the pain killers and they put me on pain patches meant for cancer patients. At this time I was 23 years old and scared out of my mind. I knew something was wrong but just a gluten free diet was not working. 1 month passed and while I was still in college I continued to get worse. The stomach pain wouldn't stop even with 1/2 dose of the highest dose of pain patches they could give me. I was miserable and worse yet I couldn't eat anything.

Went to my regular doctor (a new one this time) and she put me in the hospital. I ended up spending 9 days there. I was on a mashed potato and popcycle diet only the entire time. I was given TPN for severe malnourishment. TPN is a mixture of fats and vitamins given through the veins. My blood work showed I had no BUN. This is the by product found in the blood of protein is used for energy. If I had 0 BUN then my body was not making any energy. My doctor said she had never seen this before I was visited by many other doctors in the hospital to talk about my case.

I became the interest piece. My mother stayed by my bedside day and night. I later found out this was because they were afraid I would go into a coma. After feeling frustrated because she couldn't figure this out for me my doctor sent me to a gastroenterologist. I thank God she did because this stomach specialist saved my life.

I told him of the celiac and what I had been feeling. He suspected I may have something else wrong with me and scheduled me for yet another endoscopy (this would be my 4th one) and another colonoscopy (this would be my second one). The soonest he could do it was 3 months away. I spent those 3 months in bed after finishing out the year of school I hadn't committed myself to. During those 3 months I only had one stay in the hospital. After the scopes my gastro doctor said I had a severe case of Crohn's disease. A 1 in a million chance I would have both crohn's and celiac. He said it was probably never caught because of the celiac. Everyone attributed the similar symptoms with the celiac. So in my case my doctor's jumped the gun with celiac and skipped over the more commonly diagnosed crohn's.

I was young when this hit me a thing my doctors say saved my life and that I have a family who will do anything for me. Including drive me 80 miles to see my gastro doctor every other month. I'm still in college and will graduate with a master's degree in business in one year. I hope to travel the world one day and use my international business degree to spread the gospel and love of Jesus Christ into countries currently closed to traditional missionaries. I had once thought my dreams of mission work were ended when I found out I had celiac disease. I would say to myself, there is no way I would be able to find the foods I can eat in foreign countries. Until my wonderful mother pointed out to me that it is America that has to put wheat in everything it makes just to make it eatable. In other countries I can find real food not this processed stuff. Now my dream is alive again. I am 24 years old. I am a student, an artist, an avid sports fan, a big sister, a soon to be aunt, a daughter, a Christian. I am loved and I am important and I am diagnosed with celiac sprue and crohn's disease.

Does this story sound similar to your or a family members? You might have celiac disease, find out now, take our celiac disease symptoms checklist.

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