Letters from the SCD support group: concerning celiac disease Date: Fri, 25 Jul 1997 19:55:52 GMT From: Rachel Turet <shodanrt@LIII.COM> Subject: Colburn to Green Dear all, The following is letter sent by Theo Colborn PH.D. to Dr Peter Green of Columbia Presbyterian Med Center in New York City. Elaine faxed it to me in March 1997 & asked that I share it with you. For those of you who missed it, here's a rerun. I thought I could scan it but it seems I have to type it out (whew, long letter for a non-typist). Wouldn't it be nice if it actually had some influence? Rachel Dear Dr. Green, All four of my children were born with Celiac disease. At age 2 & 1/2 the oldest was extremely ill even though he'd been placed on a gluten free diet by a pediatrician who had diagnosed his problem as celiac disease. By late 1952 his health had deteriorated seriously when we discovered Drs. Sidney & Merrill Haas who immediately put him (and his newborn sister) on a disacchride-free & complex sugar free diet. After 5 days on the diet for the first time in his life he passed a solid stool and slept through the night. Our last 2 children also presented the same symptoms shorty after birth. How ell I remember the hours spent boiling milk with CASEC powder and the many times it foamed up, boiled over, and made our home reek of scorched milk. By the time our last child was born, Sidney Hass had passed away and we had to find Merrill who had semi-retired to Peekskill. Most important, after only a short time on the Haas diet my children became as healthy as their peers. Today, my children (age 37 to 47) have no overt celiac symptoms and are productive, well adjusted adults. In my case, at age 45 (in 1972), following an IV with Inferon (iron-dextran) prior to a hysterectomy, I began to have severe hypertensive attacks, myalgia, and diarrhea and colonic distress when I ate pork, including lard. By age 53, a great deal more than pork distressed me. It never occured to me that I was experiencing the same symptoms my children experienced in infancy. I was diagnosed with stress syndromw and irritable bowel syndrome and told to change my life style and eat more grains and roughage. The latter, of course made me worse. I had one colonoscopy, sigmoidoscopy, and ultrasound examination after another, which revealed nothing. At age 58 I saw a gastroenterologist who suggeted that perhaps I had celiac disease based on my children's history. Unfortunately, withing 2 weeks of that examination I was scheduled to move 2,500 miles to Washington, DC to take a new position. As a result, I started again trying to fina a physician in DC who would work with me rather than prescribe medications and tell me to remove stress from my life. My original degree was in pharmacy and I did not want to get on the antacid, antispasmodic, tranquilizer treadmill. I got no help from searching the medical literature about celiac disease either. The gluten-free diet was useless. And except for continuing to eat potatoes and rice (in order to sate my appetite) I ended up on the Haas diet. This was not adequate and about 2 years ago my health deteriorated so much, I thought I might have to retire. Because of flatulance, diarrhea, and severe vaginitis and cystitis it was impossible for me to work around others, travel, and eat outside my home. In addition, I had wasted to 100 lbs and was fatigued, had trouble consentrating and was in constant pain. Then one day, I was in a used book store and saw a book called "food & the gut reaction" by Elaine Gottschall. I must admit that I was skeptical because she was a dietician (Elaine wants me to clarify that she is a cellular bioligist). I could not believe what I read. She was RIGHT on. I came home & removed rice & potatoes from my diet. In 4 days I had my first solid bowel movement in 25 years. I also slept for 8 hours uninteruppted for the first time in years. I had forgotton what it was like not to suffer from and be distracted by bowel & bladder urgency. The color came back to my cheeks. I managed to put on 15 lbs, and my energy was fully restored. I am taking the time to write this because I am truly concerned about all the children with celiac disease who are chronically ill.. They do not have to be chronically ill. I have attended several local celiac society meetings and watched the chldren. These children will never be able to reach their fullest potential while on a gluen free diet. The good news is that it only takes about 3 years on a restricted carbohydrate diet to restore the childrens health so that they are sympton free and remain that way, I plead with you to try this simple approach to controlling and reversing celiac disease. You should expect success if you enlist patients and parents who have the discipline to maintain constant supervision over their children's diet and who have the intelligence to understand simple organic chemistry. I realize that it is harder today to restrict children to a diet such as this with all the prepared foods on the market and the faster pace of life. However, both my husband and I worked while raising our children. We made tremendous changes in our lifestyle to accomodate our children, but in doing so we succeeded in restoring their health. At that time it did not seem like such an inconvenience as we watched our children blossom. When they cheated on their diet, or relatives allowed them to cheat, we all had to pay for their misery. All I can say is that it was well worth the extra time & effort. My children still have excellent dietary habits and avoid prepared sugar/starch-rich products on the market. In my work I often get letters from people who describe themselves as victims. Most of the letters are filed away agter I send them a thankyou note for their interest in my work and encourage them to continue the efforts to improve their lives. Consequently, I hesitated sending this letter to you. In the end I decided I must--- because I cannot stop thinking about all those children at the celiac meetings with their strained faces and miserable dispositions. They deserve the good fortune my children and I found via the restricted carbohydrate diet. They do not have to remain chronically ill. I often see adults whom I am certain would benefit from this diet but I am certain they would not have the disipline to follow the regime; On the other hand, I can no longer count the number of people whom I have convinced to try this diet and who have had their health restored, including women with diagnosed Crohn's disease who had no hope of ever regaining their health. Only the best to you in your endevour to create an awareness about celiac disease and doing something about it. With deep respect, Theo Colborn
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