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Guest post by Wendy Wagler Schindler

The outside world just doesn’t get it sometimes. Even when close family and friends are sympathetic, they can’t completely comprehend our journey. Since our daughter’s Crohn’s diagnosis, I have been journaling how I spend my time. I want to share with my friends why I haven't been available, but don't want it to sound like a sob story as I'm not trying to solicit sympathy. I know that parents in similar situations are the only ones with real insight into this way of life.

...continue reading "Dear family and friends- sorry I can’t be available"

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My story is a little different than some of the other stories I hear about those needing the SCD diet.  Whereas many people who have chosen this diet have had things go wrong to drive them to it, we actually came to the diet thanks to a miracle.

...continue reading "A father’s perspective: It was a miracle"

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8 days.  That is how long it took to resolve his pain. Cameron is doing well now. I would rather be cooking for a healthy child than going to the hospital, filling various prescriptions, and going to multiple medical appointments.

...continue reading "I have my little boy back."

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Morana, a mother from Switzerland, shares her family's story

Our son Noah was diagnosed with Crohn’s in the summer of 2014 - he has just turned ten. In the preceding months he was suffering from diarrhea and low-grade fever. He had lost weight and the color had drained from his cheeks.

Even though it was summer, he would not go for a swim in the lake (we live on the banks of Zurich lake) saying it was too cold, while all his friends were cajoling him to join them. We knew something was wrong, but the diagnosis still came as a complete shock and we were numb with sadness and anxiety. I remember just how beautiful that summer day was, but for us it felt as if the sun had stopped shining.

Noah after 1 year on SCD
Noah after 1 year on SCD

...continue reading "Noah, A Young SCD Ambassador In Switzerland"

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My husband, Mark, was diagnosed with Crohn’s disease twenty-five years ago. He has had multiple surgeries and have used multiple medication to manage his symptoms. Things became more complicated four years ago when our son, Jack, was diagnosed with Crohn’s disease and 5 short months after our daughter, Kristina, was diagnosed with Ulcerative Colitis.

...continue reading "The SCD Journey of the Woodward Family"

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“This diet is just too hard to do” said the high-caliber gastroenterologist as he explained to me that, while he believes the diet can help, he will not recommend it to his patients.  I wish he could meet Anna and her family. They believe that when there is a will, there is a way. Anna meets challenges with resourcefulness and determination, and her efforts are worth it!FullSizeRender3

...continue reading "Anna Maintains SCD In Boarding School and While Traveling The World"

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Our son is a diet veteran, with over five years of eating strict SCD and mentoring people new to the diet. He knows that this diet granted him freedom from pain and from medications. However, while the diet led to wellness, the diet also created some dependencies that we cannot ignore.

Taco beef and salad
Teen packed lunch: Taco beef, eggplant salad, yellow lentils, fresh garden salad, olives and cheese.

...continue reading "Diet and Independence – SCD and Teens"

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My family reside in north central Indiana. In 2009 our son Isaac was diagnosed at the age of 10 with juvenile arthritis after suffering knee, ankle, and wrist pain for a few months. Right before Christmas in 2011, he was diagnosed with Crohn's disease, and now his arthritis is considered an outlying symptom of Crohn's. Isaac was prescribed prednisone and the GI doctor wanted to put him on an upper level medication right away.

IMG_7195 ...continue reading "Isaac’s SCD Journey"

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2010-2012

Despite our doubts and despite the doctor’s cautions, we decided to try a strange diet to manage our son's Crohns. Concerns about giving our son harsh medications from a young age had led us to the Specific Carbohydrate Diet. In order to give the diet a fair chance, we made sure to practice it strictly and consistently and to our amazement we began seeing results. Within a short time, the Crohns symptoms had diminished, lab results had improved and later normalized completely. We even began mentoring other families that were facing similar medical conditions. ...continue reading "Milestones in our timeline"

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We started as a single family, isolated, struggling to find a solution for pediatric Crohn's. As we began mentoring other families that had ill kids and were interested in the SCD as a therapeutic diet, our personal story expanded to include their stories as well. At first we used to invite each new family to our home so that they could learn in person how to start the diet and how to make it work. The number of interested parents increased weekly. We would come home and find phone messages on the answering machine, or wake up and find emails from desperate parents. To help address the growing need, I started periodic group mentoring sessions, but this did not help parents that lived far away. Reluctantly, I had to overcome my technical gaps and my strong need for privacy, and in 2014 I started a closed group on Facebook to support parents of IBD children and teens. The group is called SCD Families. These are just a few of the emails and messages sent to me during this time.

Identifying details have been removed to protect the privacy of IBD patients and their families
...continue reading "SCD Family Stories"

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