CSMMayo (@csmmayo) published a blog post · March 31st, 2010
The disease that killed my mother was the same disease that was killing me
I am writing my story of celiac disease. I was diagnosed in March 2008, at the age of 73. I also want to tell my mother’s story. She passed away in 1945 at the age of 30; when I was only 9½ years old.
My mother was sick all her life. I remember her not being able to go anywhere because of diarrhea and being so very sick. At the last part of her sickness she was passing a lot of blood, and her legs were swelled so excessively. She had seen many doctors with no help. The last day they gave her penicillin, but it was too late. Back then, they would only give penicillin to the solider boys. They said she had a new disease!!!!
As we were growing up, my twin brother and I went to live with our grandparents. I was sick off and on my entire life. I married and had a son and daughter.
I suffered with diarrhea, hurting in my stomach, cramps and weight loss. When I gained some weight, I would say (jokingly), “I am going to keep this weight to get sick on.” There was not a clue of what was wrong with me. Tests were done but all they would come up with was irritable bowel syndrome and obstruction of the bile duct.
In the year 2000, I lost 21 pounds in two months. My local physicians couldn’t come up with any answers. I was sent to a specialist in September 2007; all kinds of tests were conducted such as lower and upper endoscopy, C.T. scans, capsule endoscopy and biopsies. Six of these tests were done in 4½ months. I had a lot of polyps the in lower colon removed; one was high grade pre-cancer cells. But, no answers to why I was so sick except an inflammation. They agreed they were missing something! I went back home, made several trips to the emergency room and hospital -- two times my blood pressure was 47/37. There were drastic changes in my eyes, and I went blind in both eyes. My eyes got some better in three weeks, and I could see the Big E. I was losing ground. Two minutes after I would start to eat, I would have diarrhea, and was so sick.
My husband’s health had been failing since 2006, and I was his caregiver. Our daughter and son got two ladies to come in to take care of him. The last trip I made to my local hospital in Missouri on March 14, 2008, my blood pressure was again 47/37. I didn’t think I was going to last very much longer and my doctor AGREED!!!
My symptoms worsened, but no one associated the food with being my problem. My daughter got an appointment for me at Mayo Clinic in Rochester, Minnesota. I left my local hospital on March 23, 2008, and my daughter and I left to go to Mayo Clinic immediately! It took us at least eight hours to get to the Mayo Clinic so my local doctor had suggested I drink Gatorade all the way there. We met with Dr. Glen Alexander at Mayo for the first time at the end of March 2008. After several tests were conducted, Dr. Alexander thought it was likely confirmed that I had collagenous sprue, a disease in which the immune system strikes the body (gluten intolerance). The small intestine is lined with hair-like projections, (called villi). The doctor at Mayo who was treating me said the villi were depleted completely. Then, Dr. Alexander told us that celiac disease was an auto-immune digestive disorder toxic reaction to gluten, which has an increased incidence in family members. When Dr. Alexander said it was more likely to occur in family members, my daughter looked at me, and we both were thinking the same thing -- “Now we know finally what was wrong with my mother when she died.” 63 years ago!!!! Also, the doctor told us what was wrong with my mother and the diseases she had as a child even though he had never met her. We were surprised that he was correct in telling us that she had scarlet fever.
Dr. Alexander gave me medication before I left Mayo Clinic. I have read that celiac disease is not usually treated with drugs, but mine was. When we left the Clinic my feet were swollen. I had worn size 7 women shoes, but we had to get a size 14 wide men’s shoe to come home in.
I was on the medication for one year, and called my doctor at Mayo Clinic every month to report in; he would always call me back and that meant so much to me. In March of 2010, it will be a year after stopping the medicine, (Endocort).
If I eat any gluten-containing substances, I get very sick, but I watch it like a hawk. I have a lot a pain from fibromyalgia and arthritis as well, but no help with that.
I know I won’t get over this celiac disease, but, I am thankful I have come so far from where I was two years ago.
Thanks to God, My Family, Friends, and Mayo Clinic doctors to get me this far!!!!
Sincerely, Betty E. Cornine
P.S. Note!! Please remember the three steps that could save your life:
Step 1 – Blood test;
Step 2 – Endoscopy and tissue biopsy;
Step 3 – Genetic testing