What a difference a year makes! In January 2015, after months of suffering from extreme abdominal pain and losing nearly 25% of her body weight, my sweet ten year old daughter was diagnosed with Crohn’s Disease. To say we were shocked and devastated is an understatement, but we were thankful to finally know what was causing her pain. After meeting with her doctor and discussing the three treatment paths available to her, we opted for the Specific Carbohydrate Diet (SCD) and agreed to participate in a 12-week clinical trial through Children’s Healthcare of Atlanta. My daughter was the one who made the decision, and she has been 100% committed and involved from the onset.
On February 1, 2016, we celebrated one year on SCD! And what a miraculous year it has been. We were a bit overwhelmed when we first got started, but took your advice and just began, not worrying about whether or not we had every single item necessary (e.g., the yogurt maker, all the legal ingredients for everything). My daughter has thrived in the past year. She has gained back all of the weight she had lost and more and has grown 3”! Gone are the signs of malnutrition and she is back to being her fun loving self, is always on the go with friends and activities, and most importantly is free of all signs and symptoms of Crohn’s. It has been miraculous as she has achieved this through the diet and was never on any medicines to treat her disease (except for Nexium for a short while at the beginning). Her blood work was fully normal within 3 months of starting the diet and has remained that way throughout.
Our entire family eats SCD and we have created lots of delicious recipes – many replacing our former family recipes as we prefer this version better. While I admit I spend a lot of time in the kitchen, it has been worth it to see my sweet daughter happy and healthy again. One of the things that I think has made it more manageable for us is that my husband went on the diet fully as well, to fully support his little girl (and experience the same feelings that she was going through). Together they have a lot of fun cooking and creating new things. My daughter loves to cook and has really enjoyed making some new recipes and mastering them. I think being able to make her own food, her way, has given her a sense of freedom and control in managing her Crohn’s.
We are so thankful to have found SCD and thankful for the support and encouragement this website gave us during the early stages. For anyone considering SCD, all we can say is that it is worth it! And just like with anything new, it gets easier as you get more experience in what foods are safe and how to work with them. I will have to send some of our favorite recipes to post for others….you can definitely eat well, enjoy delicious food, and be on SCD. Thank you for setting up this website and for being available to us throughout to talk through things. Your support made a huge difference!
We cannot thank you enough Debra for keeping us updated and sharing your daughters success with the SCD diet! We all know what hard work this is for you as a mom. Keep up the hard work! Sounds like you are doing an awesome job!
Hello everyone! Sorry it has been so long! Work has kept me BUSY!!! And as I am sure all of you moms are out there, BUSY, I have a GREAT tip to share!
We first learned about the SCD Diet from our GI doctor, who I believe was encouraged to try a study on the diet after her son had success on the diet. Kathy was ALOT of help to me when we first started the diet! I could never thank her enough!
Kathy now cooks SCD/Paleo meals fresh weekly. She has once again been a lifesaver to us!!! She texts me the menu for the next week and we let her know what or how many we want and we pick them up fresh at the beginning of the week. They are also GREAT to freeze! I use the meals for school lunches because they look SO much like normal foods for his social eating. They are great for my son to pull one and yes, sometimes, two out to eat when he is hungry. We keep up with his favorites and order double of his favorites when they are offered. I could NEVER cook this variety of foods for him with our busy schedule and cooking for others in our family at the same time!
Kathy offers a variety of great meals from jambalaya, spaghetti, enchiladas, chicken stir fry, and meatloaf with smashed cauliflower just to name a few. You can contact Kathy if you are interested at 404-694-9247! My son loves them all, but really likes the enchiladas!
This is Cameron at Camp Oasis, a summer camp specifically for children with Crohn’s and colitis. Because of the support and research of the CCFA, Cameron was able to attend this life-changing camp. My youngest son Cameron was diagnosed with Crohn’s disease in 2011 and he’s now well enough to be a Teen Team Challenge Honored Hero and participate in a half marathon with Team Challenge on July 11th in Portland, Maine. I can’t even begin to express how absolutely devastating it was as a parent to spend so many nights in the hospital, watch him undergo painful procedures, endure sickening side-effects from drugs and worst of all watch him go from a strong athletic happy-go-lucky kid to one sidelined with weakness and pain. However, with your generous donation, you can help make attending Camp Oasis a possibility for other children suffering with the same IBD. PLEASE help us by visiting online.ccfa.org/site/TR/TeamChallenge/Chapter-Georgia…… and donating generously to the Crohn’s Colitis Foundation of America. Please make your donation by May 17th, my personal fundraising deadline. Thank you and God Bless!!
Hope everyone has had a great Spring Break! I am going to start working on the Kid’s blog! Excited!
I was hoping you moms could give me some ideas for it. I’m not perfect and knowledgeable on the whole blog thing but hopefully I can get it set up in the next couple of weeks.
Any ideas would be helpful. Please don’t be upset if I don’t get your idea on the blog. Lol. I might not know how to do it. I was HOPING to see if I can figure out how to fix the blog to where all of the kids can post on the blog. For example, my blog now only I can post. If someone else wants to share something they have to email me and I copy it and post it. I think this would help the children all feel like it is their blog also and they will share more. I do plan on watching the blog closely and would appreciate help from other moms as well. I will make a note on the blog that an adult will be monitoring it. But, I think it would be a very good idea NOT to tel your children you look at it , as I think they would be cautious and reserved at being open and making friends here.
What are your thoughts and ideas?
I had an idea pop up today. Just curious what other moms of teenagers thought. My son always seems like none of his friends understand his diet and right now after having to start the diet again he seems very down and making comments that he doesn’t have any friends. I have heard some moms out there say some of the same things about their teens. I was curious if I started a blog for Justin to post and share his thoughts and favorite foods/recipes if you think your children would like it and participate? It would give them a place to go like we do to not feel like we are alone. I will set him up an email address where they can share things and we can post their comments. I was just wondering if any of you moms thought this would be good for your children. We are always saying how great it is here to hear that we are not alone, and that we wish we could get our kids together. I was hoping this might be something great for our children! I can only imagine how they feel if us moms are feeling alone!
Comments please! Thanks!
Hello, everyone. I am finally sitting down and sharing our report for my son, Justin’s, four year pill cam results since being on the SCD Diet. If you have been following my blog for a while you know my son is now 14 years old. He was diagnosed at age 10 with Crohn’s Disease. He started the SCD Diet test study with our doctor, Stanley Cohen, at GI Care For Kids at Children’s Hospital in Atlanta, Georgia. We were thankful our doctor gave us a choice rather than put our son onto medication. My son took some vitamins and probiotics when he was on an antibiotic but was never put on any medications after he was diagnosed with a mild case of Crohn’s. He has been symptom free and medication free since the “dying off stage” of the SCD Diet (as long as he didn’t cheat on the diet). After 3 years on the diet, and being a teenager, Justin started cheating. Justin’s father and I, as well as his doctor, to let him choose his foods and try to eat healthy but off the diet somewhat. But you know how you give a teen-ager an inch and they take the mile! Lol. Just had gotten to where he was drinking cokes, sugar candies, etc.
We had a pill cam a couple of weeks ago. Justin’s blood work and stool samples actually came back perfect. But his pill cam results showed that his intestines were showing signs of small ulcers again. They said it was about halfway from when his pill cams were perfect to when he was diagnosed 4 years ago.
Justin has chosen to go back on the diet instead of choosing medications. We are not planning on going onto the diet 100% at this time. We are anxious to see how he does being on the diet majority of the time with some splurges, kind of like he was eating before he went off completely. I was starting to follow the Paleo diet some because it added a few extra items that helped him alot having been restricted for so long (maple syrup, sweet potatoes, natural chocolate chips). Justin is not showing any signs of symptoms. He is still feeling good. So honestly at this time I think he would continue to cheat behind our back if we didn’t give him some room to play around.
Justin has been very upset and mad about this diagnosis and not looking forward to it. We are VERY grateful his he healthy with this disease and it has helped him, but it is hard for him to understand and cooperate when he is so young and hasn’t felt any symptoms or suffered recently to where he remembers. I have talked to some moms whose children have suffered so badly they do not forget and will not cheat on the diet.
We have hopes and are anxious to see how this works for Justin. If being on the diet like this doesn’t help, then we will go back on it strictly.
Thank you for everyone’s concerns. I had hoped to have better news. I will say that after Justin was on the diet for a few years and was eating Paleo and splurging on glutten free pizza and make “wise” cheat choices his insides still looked perfect. There is hope for the future! I hear GREAT results from moms with children on the diet!
Please let me know if you have any questions you would like for me to ask other moms here on the blog or if you have something you would like to share!!! And KEEP UP THE GREAT WORK! We ALL know it is NOT easy!