Carol Myers' Story

I didn’t have the most ideal childhood; however, a very wonderful thing came out of it. Through all of the conflict, I learned to think outside of the box and problem solve! As an adult and mother of four boys I certainly didn’t want them to ever experience the pain I did, but unfortunately life happens, because so much of life is out of our control. Many times I have told my boys, “If you don’t like something, you have two choices: change it or accept it.” 

One of the greatest blessings in my life was getting to be the mother of four wonderful boys. I was very fortunate to be at home raising them for most of their childhood. I’m a lover of art and the outdoors, so when I was not dragging them to a museum or checking out a sunset, we were off on an adventure. We spent hours doing fun things like skiing, hiking, swimming, rafting, biking and school and club sports. When Luciano was 4 he also joined in on swim team, skiing and soccer.

Through club sports we became friends with a couple of doctors who had boys playing on the same team. When Luciano first started showing symptoms of Ulcerative Colitis, I was so concerned that I asked a couple of them to help assess Luciano’s symptoms.  I wanted to know; was all that blood normal?

Apparently it’s not that abnormal.  It wasn’t until a few months later when his condition hadn’t gotten any better that I began to seek medical help.  I made an appointment to get Luciano into a gastro-pediatrician for a colonoscopy and an accurate diagnosis.

Ulcerative Colitis (UC) is the cousin to Crohn’s disease. With UC the body attacks the large intestine and you can have ulcerations, which make the inside of your colon look like raw meat. This is called a “flare.” When your body is in a flare it’s very painful, you cannot absorb nutrients and you have to be near a toilet at all times. Many children with this disease have stunted growth and are malnourished.  Doctors use varying treatments on UC patients in an attempt to end the flare as soon as possible. When Luciano was sick, he was given an oral steroid pill, steroid enemas (at night) and a very strong anti-inflammatory drug. He was anemic and very, very sick. I was told one of the cures for this disease was to remove the large intestine. This of course meant surgery and a lot of reconstruction work and other issues. My hope was to never have to go there.

Luciano’s gastro-pediatrician, a highly respected doctor, was kind, smart and did a great job of explaining the disease. When he asked me, “Are you emotionally ready to have a chronically ill child,” I didn’t know how to answer. All I knew is that whatever journey we were on, it was going to be difficult. I made the personal choice then and there that I wasn’t going to treat Luciano any different than his brothers. I wasn’t going to treat him like a “sick” kid. We did attend a few networking groups with children who suffered with UC and Crohn’s. I imagine these groups are helpful to sick children and parents alike, but it was painful for me to see such sick children; many with no hope. I wanted to solve this problem for my son.

I didn’t want Luciano to be sick! In my heart of hearts, I felt there had to be another way. There had to be another road to travel. What is this disease? We have no family history, and I thought we ate well.  Was it a virus that caused this? What was going on? I’m a praying woman, so I got on my knees and prayed and I did a lot of research.  Then it happened, that on the same day, two people from two completely different places told me about the Specific Carbohydrate diet (SCD diet).  I have lived long enough to know that when two people tell me the same thing on the same day that, I need to listen.

I went back to my gastro-pediatrician to discuss this diet. He informed me that there are 900 diets that claim to be “the one.” So basically, what I was hearing him say was, “you can try a diet, but your chances of finding the one that will work is like winning the lottery.” He also told me that it would be near impossible to get Luciano from being anemic without giving him iron pills. Iron pills were not legal on the diet.  Luciano’s grandfather and Uncle were both pharmacists. They preached countless times to me that the FDA does research on the safety of drugs and why on earth would you ever try anything not proven by science? In other words, my best option would be to accept the disease and take the prescribed drugs.

I poured over the book about the diet, Breaking the Vicious Cycle, by Elaine Gottschall.  I have a college education, but I’m no scientist. The way she explained what happens as the food you eat breaks down in your body, changed the way I view food. Her explanation of this process made total sense to me. The theory of the diet is that by stopping certain foods, you stop feeding the bacteria that causes the ulcerations. In the book, and on-line there’s a list of legal and illegal foods.  In the 1950’s Mrs. Gottschall’s daughter suffered from UC.  Her daughter was so sick and in such pain that her husband suggested that they should “just let her die.” Mrs. Gottschall found, Dr. Sidney Valentine Haas, who treated her very sick daughter. He prescribed the SCD diet and showed her the importance of understanding the effect of food on the body.

Unfortunately, Dr. Haas passed away two years after her daughter had been on the diet. At that time, her daughter was no longer experiencing symptoms of the disease. Elaine Gottschall went back to college to continue her education and gain understanding of the effect of food on the body. She later went on to write a book to explain the diet which she dedicated to Dr. Haas.

When I made the choice to put Luciano on this diet, I thought to myself, “I’m either going to kill my son or make him better.”  The fear I felt about stepping outside of the box and making that choice was the most difficult feeling I have had to conquer in my life. I felt that I had no support from Luciano’s father or doctor and that I had to battle the “what ifs” on my own. The last thing I wanted to do was make his condition worse!

After two months on the diet, Luciano no longer had diarrhea, he was no longer anemic (he did not take iron pills) and his blood work was totally normal. He no longer needed steroids. We kept Luciano on the diet with “fanaticism” eating only legal foods, for five years. After the first really bad flare, he only had two other flares that were over in about a month. He was on an anti-inflammatory drug for a few years. When he was around 12 and taking the medication on his own, he decided he didn’t want to continue taking the drugs. The doctor told us about the negative consequences that could occur by making this decision.  Fortunately, none of those things happened.

It’s been over 7 years since Luciano has been on any medication and 11 years since he was diagnosed. He has tried eating typical American food, like pizza and ice cream, but has made the choice himself to eat only organic whole foods and to keep mostly to the foods on the diet. Today, Luciano is healthy, thin and stands about 6’3” tall. In my opinion the diet, is the reason Luciano lives a normal life today without any symptoms of UC. Based on my understanding of Ulcerative Colitis, this is nothing short of miraculous.

Even though she is no longer with us, I would like to personally thank Elaine Gottschall for her beautiful mother’s heart. She not only helped her own daughter heal, but provided us with the knowledge to heal ourselves. To those who are willing to listen and think outside of the box, Breaking the Vicious Cycle offers those struggling with UC hope that is not readily available through modern medicine.

​ Today, my sons and I continue to grow our food or find the best local organic foods available to eat. This journey has completely changed the way we view food and how we eat. It has also given us a very healthy dose of hope and on any given day you might find us happily gardening in our Sunshine Boots!

Luciano and his brothers in 2014.