The specific carbohydrate diet has improved my IBD symptoms immensely. I am so relieved that I am able to run again without being limited by my indigestion. Changing my diet was a challenge, but definitely manageable.
My daughter was recovering from a flare of her Crohn's Disease, but she was still having symptoms until we got Dr Suskind's book and started SCD. The turn around was quite dramatic, and she has been following the diet, and continuing to feel healthy, for a year now. The learning curve seems steep, making yogurt, baked goods, almond milk, and lots of new things from scratch, but now it's part of our lives and we know that the diet has allowed my daughter to be strong and healthy!
Last year both of my kids were diagnosed with Crohn's Disease. This was devestating news for our family.Dr Suskind and the SCD gave us hope. We jumped right in to the lifestyle changes and never looked back. My oldest got into remission within 2 months. My youngest showed lab improvement right away too. A year later, they are happy, healthy, growing and thriving. We have navigated air travel, hockey tournaments, ballet recitals, holidays, class parties and everything in between. My kids enjoy the food and are full of energy. We are so thankful every day for Dr Suskind and Seattle Children's Hospital's commitment to research alternative healing methods. I know without SCD we would be in a much different place. There's a large, supportive community on Facebook that has helped us along the way. Our whole family is much healthier because of it.
My 7yr. Old son, Braxton just finished his football season and we were at the arcade for his award banquet and that was the first time he had an accident. He was in and out of the restroom about 10x a day for the past 3 weeks. After that night he started using the bathroom more than 20x a day and one day he had blood in his stools frequently. We have already been going though so many tests with his pediatrician at this time and all were comming back normal. I called his primary Dr. As soon as we seen blood in his stools and he ssaid he was going to refer him to a GI specialist and asked if I would like the referral to go to Spokane or Seattle. I chose Seattle and it has been the best decision ive ever made. In February my son was scheduled for an endoscopy and colonoscopy. Less than 1 week after we received a call from Dr. Lee confirming Braxton had Crohn's. Dr. Started him on Pentasa right away and he got us in to see him the next day to talk about options. We chose to start Braxton on a 10 week formula diet and start the SCD after. At first it was overwhelming reading book after book, researching online, talking with Seattle's Dietitian, but we had 10 weeks to prepare(at least, I thought) at 8 weeks Braxton results were still not within the normal range. Dr. Wanted to transition to the SCD. I've never seen him so happy to have food. My son has always been a hard worker, helpful, and outgoing and during this pass 3 month process, he was tired, grouchy, irritable, fatigued, not my fun loving child. Durning the first three weeks of the SCD he slowly became himself again. I I was starting to feel relief for the first time in a long while. It was work, working full time and coming home and working in the kitchen until bedtime but It was worth the results I was seeing in Braxton. We had our 4 week follow up and Braxtons stool and lab work were still not normal. Dr Lee wanted to start Braxton on Prednisone. Braxton swelled so quickly but i noticed his stools were looking normal and he wasn't in the restroom as often. He also had energy! He took prednisone for a month and then slowly weaned off it. He has been off all medication and 100% on SCD for 1 month and he's doing amazing, ( we have our little boy back), Im not in the kitchen as often because ive learned how to simplify (I know most recipes without looking at a book or going online) It was a hard transition fir our family but it has been a good one and Braxton loves to help in the kitchen, he is starting to understand all the things he can and can't eat. When someone asks me if Braxton can have a certain food, he usually answers before I get my answer out and he's always been right!! This diet has saved my son. It hasn't been easy but after you put one foot infront of the other, you'll be running before you know it! He is excited to start tackle football next month! without this diet, I really don't think he would have been able to participate this year!
Our son Noah was diagnosed with Crohn's disease three years ago. He was started on pentasa, which did not do much to help alleviate his symptoms and our agony in watching him suffer (it was summer and he was even too weak to leave the house and go for a swim in a nearby lake) . Luckily we stumbled upon the SCD diet by searching the internet. Our GI here in Europe was not acquainted with the diet, but fortunately Dr. Suskind was immensely kind and helpful and encouraged us to try the diet. So after two weeks of only pentasa, we have started the first phase of SCD diet. Noah's symptoms got better almost immediately, after only 5 days he was able to go for a swim- for us parents that was a sure sign he was on his way to recovery! The miracle continued and after two more weeks he has gained almost 6 pounds and was in remission! After a year and a half of amazingly stable health we have started to wean him off pentasa. We did it very, very slowly and we always checked his calprotectin levels after reducing the dose. Now he has been med free for almost 8 months, his calprotectin level has stayed below threshold and he is doing great! SCD has done wonders for us, we truly hope it will be the same for you and your child! If you would like to read our detailed story, here is the link http://gutharmony.net/index.php/2016/01/17/914/.
It all happened in slow motion.
We had been sitting in the waiting room at Children's Hospital with other anxious parents for what seemed like days. It had really only been about an hour or so. Then, we finally saw our name on the board, indicating that our son's procedure was complete and we could go meet the doctor.
From that moment, everything became fuzzy and time seemed to be stop. To be honest, I have a hard time remembering the details. All I recall is being told that Caleb had come through the procedure fine, but that he had Crohn's disease. I knew it was a chronic illness, but didn't know much about it at that time. He was in recovery and we could go in and see him.
It took a couple of days for the news to actually sink in. It took a couple more of intense research to fully comprehend the magnitude of what my son would face the rest of his life.
For the last 10 years, I had woken up every day with the goal of doing everything in my power to keep my son safe, to keep him healthy, and ensure he was happy and secure. Now, in a matter of a flash, it was all gone. An autoimmune illness had taken over and control.
I was scared to death.
What Do You Do After Your Child is Diagnosed With Crohn's Disease?
I did what any Type A, driven, controlling, protective mother would do. I learned everything I could about Inflammatory Bowl Disease. What caused them? Why? What were common treatments? What were the side effects? I joined online supports groups, read books and talked to other parents.
We had a follow up meeting with our GI Specialist a week later. Based on the colonoscopy and Caleb's blood results, he was advising drug therapy to reduce the inflammation in his body. I had already read about the variety of anti-inflammatory drugs and knew their side effects and immune suppressing implications.
I decided to pursue a different approach – one that aligned more closely with my natural and holistic instincts. This involved managing his disease primarily through diet. My GI Specialist was on board, so long as we monitored Caleb's blood work carefully. We decided to take out all dairy from Caleb's diet, along with most gluten. We already ate a pretty clean diet, but going forward there would be no more fried food, sodas etc. I also planned a trip to New York to visit a Chinese Doctor who specialized in chronic illness (who I had used for my daughter's Lyme Disease). I started Caleb on Chinese Herbs to help reduce the inflammation in his body and help increase his digestion.
The next month, we did blood work and Caleb's inflammation levels had dropped all the way down. They weren't quite at normal levels, but we were pretty excited.
They remained that way for almost two years.
Caleb Fell Out of Remission
Then, as any chronic disease can and will, it reared its ugly head.
Caleb's inflammation levels started to rise. The doctor was alarmed, as was I. He told me about an elimination diet that was having great results with IBD patients. Due to its highly restrictive nature, it was very difficult to follow, especially for kids, The diet, called The Specific Carbohydrate Diet, eliminated all grains, gluten, complex carbohydrates (rice, corn, potatoes), sugar, dairy and preservatives. Basically, it cut out all foods that kids traditionally eat. If you're familiar with the Paleo diet, it's very similar.
Complex carbohydrates, that are not easily digested, feed harmful bacteria in the intestines, causing them to overgrow and inflame the intestine wall. The diet works by starving out these bacteria and restoring the balance of bacteria in the gut. This reduces inflammation in the body and is why the diet is so helpful for anyone who struggles with inflammation or digestive issues.
I felt we had no choice, so we jumped in. Caleb agreed as well.
Starting the SCD Diet
Before I even got home, I had purchased Elaine Gottschall's book, Breaking the Viscous Cycle, which tells the story of another mother, just like me, struggling to help her child with a debilitating case of Ulcerative Colitis.
After failed attempts with drug therapy, Elaine (the mom) faced surgery to remove her daughter's colon. After desperate inquiries with specialist after specialist, Elaine had been given the name of 92- year old Dr. Sidney V. Haas, MD, in New York City. Dr. Haas had developed a nutritional approach to intestinal healing. He put her daughter on a special diet and within weeks, Judy's neurological problems had diminished, her intestinal problems improved, she started growing again and within two years, she was symptom free. By this time, Dr. Haas had passed away and Elaine felt she had an obligation to carry on his legacy. This is how the SCD Diet came to be.
When we arrived home, we emptied the house of everything that had sugar, gluten, grains and preservatives. It didn't leave much. I decided to go on the diet with Caleb, so that I could support him and he knew we were in this together (which we are).
The first couple of weeks on the diet were hard. I'm not going to lie. They were hard on Caleb and me. I was desperately trying to find recipes to cook and bake for him and he was just hungry all of the time. Luckily, there is a very strong online community of other parents on the SCD Diet who provided great support during this difficult time (and continue to do so).
Falling into an SCD Rhythm
We finally fell into a rhythm. We found great recipes for cookies, cakes, bread, crackers, marshmallows & more. I started making homemade yogurt and bone broth to help with the healing process (which is an integral part of the diet). It felt good to feed my son such whole, healthy foods that I knew were healing him.
Four weeks later, we went back to have our first appointment since Caleb's inflammation levels had risen and since we started the diet. I was holding my breath, not sure what the results would be. Unbelievably, Calebâs c-reactive protein (one of the markers which measures inflammation in his body) had fallen from 19.2 to 6.5.
We were ecstatic (and relieved). The diet was working. I remember sobbing when I got the results. I felt like I had been holding my breath for months and now I could finally let it go.
There was hope.
We plowed along for some time, cooking, baking and cooking some more. After all, there is very little to buy in stores today that doesnât have sugar, gluten or some preservative in it. Thereâs plenty of great gluten free food â" but itâs all filled with sugar and preservatives. So, we have to cook almost everything our kids eat.
A Nagging Feeling Inside
Caleb was doing really well physically on the diet, but socially and psychologically, he was struggling. Between school bake sales, birthday parties, sleepovers and more, he was having a hard time navigating a world filled with junk food. He kept saying, he just wanted to be like a âregular kid againâ.
Every day, I was in Facebook IBD support groups talking to other parents whose children were sick. Some were using drug therapy and didnât know about the SCD Diet. Others were on the SCD Diet, but were having a hard time finding recipes and making all of the food. There was hardship everywhere I turned.
I decided then that I wanted and needed to do something about it. I wasnât quite sure yet what it was. It took some time to come into focus. I saw Caleb struggling, feeling like a social outcast and knew there were hundreds of thousands of other kids just like him. I saw exhausted parents, weary to the bone from all of the cooking, and I knew there must be a way to help.
Then, it came to me.
I Would Start a Company to Create Healthy Fast Food For Kids
I would create a company to make healthy fast food that any child on a special diet could eat. It would all be grain, gluten, sugar, dairy and preservative free. It would be typical kids food that I know Caleb would want to hang out with his buddies and eat. It would look and taste just like kid's fast food. It would also be marketed and branded that way – with big bold colors. In fact, I ended up creating a "marvel-esq" cartoon character of Caleb as the logo. I would sell it frozen, so there would be no cooking involved for the parents. All a parent or kid had to do was pop it in the microwave or oven.
Caleb's Cooking Company was born.
I partnered with a chef named Travis Bettinson who specializes in cooking SCD food. He had been cooking SCD food for kids with Crohn's and Colitis at Camp Oasis (camps for kids with IBD) for years. He also did all of the cooking for a recent study at Seattle Children's Hospital, studying the effects of the SCD diet on IBD.
I became a member of DC Union Kitchen, a food incubator in Washington DC, which provides businesses with a best-in-class, professionally managed commercial kitchen for production. They also provide distribution and have dozens of relationships with retail partners in order to bring products to local and national outlets, including 20 Whole Food Markets.
Most importantly, we created Caleb's Club, an exclusive online club just for kids with chronic illnesses, where kids get together, hang out, share funny videos, images, music and experiences. Caleb runs the club and the goal is that no child should ever feel alone or like an outcast again.
We decided on our first products we would bring to market. I asked Caleb what food he missed the most and that helped drive our decision, combined with Travis's already successful recipes.
We decided on:
Non-dairy Tomato & Sausage Pizza
Bean & Pork Enchiladas
We knew that our food not only had to taste good, but it had to look good as well. We are finally in business and selling our fabulous SCD food online (and soon in a store near you). If you are on the SCD Diet and your kids miss regular packaged kids food, check us out - at https://calebscookingcompany.com/
Two years into the SCD Diet and Caleb is doing great! He is completely medication free and is healthy strong and active. The diet works but it takes patience, patience and patience. Stick with it. It's a journey and a new healthy lifestyle. Believe that in your heart and you and your family will succeed.
At the age of 14 my daughter was diagnosed with Crohn's disease. After being fired by two doctors who wanted to immediately put her on Biologics and steroids I am proud to say that we were able to get my daughter into remission by ourselves using this diet! We did an elemental diet for 90 days with orgain and transitioned into SCD immediately after. Thanks to Tali Guday and the other groups on Facebook we were able to do it on our own until we were able to get an appointment at Cedar Sinai in Los Angeles. I will be forever grateful for Dr. Suskind's book, our Facebook friends that have held her hand through this journey, the diet of course, and the hand of God that has never abandoned us.
We now celebrate 2 1/2 years of clinical remission.
Los Angeles, Ca
The Specific Carbohydrate Diet saved my life. I was ill for 8 years before I discovered the diet. Now that I have been healthy for 7 years, it's still the only thing I need to stay symptom free. I do have to be strict, but very much worth it. I'm grateful that clinical research is being done. It's my hope that more people will discover this and have the same benefits.
I have been on and off SCD for UC for over ten years. I am ALWAYS healthier when I am on it. I am currently on SCD, and in a clinical remission. My recent labs were all within normal range with slightly low Vitamin D which could be blamed on being cooped up inside all winter (the blood work was in March). My current goal is to remain healthy and to do so with SCD, and to eventually wean off of mesalamine meds in consult with my GI. I credit SCD with helping me avoid biologics and autoimmune suppressants which were recommended during my flare a year ago. I chose SCD and it worked again! I am very grateful!
Son diagnosed with UC in July 2014 at age 28. Asacol caused horrible side effects. Pentasa wasn't working. Started the diet August 25, 2014. Follow up at Dr in January 2015. We were told the diet doesn't work. No help offered. Son took himself off Pentasa in March as he was improving on the diet. No meds since and doing great!
I am writing to give everyone out there hope and encourage perseverance with SCD.
My daughter was diagnosed w UC 4 days before Christmas this past year. As with everyone out there, we were devastated with the news and felt completely lost as parents. As per doctors orders, we put her on prednisone immediately following the colonoscopy and endoscopy. And then discovered SCD through a very close friend whose son was diagnosed w Crohns - who she healed strictly through the diet, never touching any medicine.
We went through the emotional, physical and mental turmoils of beginning SCD and finding those perfect equations. Although dissipating, our daughter continued to bleed for months. We wanted to break and give her medicine in addition to SCD (the Canasa is still unopened in our cabinet) - but we stayed the course. We learned of some great supplements - L-glutamine, collagen and butyrate and started to incorporate them daily.
We just had her 6 month check up on Monday - solid on SCD for 5 months. Her bloodwork is impeccable, her c reactive protein is below normal ...and most incredibly, her calprotectin went from 867 at diagnosis to normal!
We started SCD when our son was in elementary school, shortly after his Crohn's diagnosis. We adjusted the diet to accommodate his food allergies to tree-nuts, fish and eggs, and over time incorporated some principals from other helpful diets, like paleo AIP and the raw diet. Our son maintained this strict diet throughout middle school and high school, and continues the diet now as a college student. As a mother, I bless diet therapy every single day! It is not easy to practice, but it allowed our son to have normal childhood without IBD symptoms and without medications. As a bonus, it also enhanced life skills like willpower and created a framework for healthy eating habits. We do not focus on the restrictions, but rather on the freedom and wellness that this diet enables.
In gratitude, and in efforts to help others enjoy the benefits of diet therapies for IBD, we now mentor hundreds of IBD families via the support group we started: SCD Families (https://www.facebook.com/groups/SCDFamilies/) and via the site Gut Harmony https://www.facebook.com/gutharmony.net/ .
As a last note, we were blessed by having access to the wonderful GI team at Seattle Children's Hospital. It is a privilege to have a GI team with doctors that are at the forefront of medical research and are open minded to new medical approaches.
I'm a mom of a 16 yr old who was diagnosed with Crohn's at age 4. I went back to school and became a clinical nutritionist. I immediately put Reagan on the SCdiet once I studied it. Within the first 2 1/2 weeks, the bleeding stopped. Within a month, his teeth turned white again, and by the second month, he had grown 3 inches. He's 16 years old, and now 6' tall. Most of his childhood was without medication. I would love to share a testimonial on how effective the SCdiet is, from a family who has already raised a child on it.
Thank you for being a light in the darkness. Diet offers hope and solutions to many people living the IBD nightmare.