Guts and Grace: Crushing Crohn's Disease with Diet Only
Left photo: Robby shortly after his Crohn’s diagnosis. Right photo: Robby 6 months in on the SCD Diet.
When we found out our 11 year old son had Crohn’s disease over a year ago, my knees buckled at hearing the diagnosis. I leaned against the bathroom wall, and God’s grace leaned with us. Dearest reader, I just want you to know, that wherever you land on your spiritual beliefs, you are welcome here. I just really think God carries a bucket of grace and He sloshes it all over the steps we are about to take.
So here I am, sharing about these grace-soaked steps we’ve taken. So many have asked for a blog post on this part of our life, so here we are. This is our journey. If it speaks to you, then praise God.
It’s been over one year and all I want to do is tell you how WELL Robby is! But first, I need to remember how bad things really did get.
He had stomach pain ranging between a 7-9 on the pain scale for several weeks in the summer of 2018. He battled a fever on and off. He was lethargic, depressed, antisocial. On the soccer field he was appearing lazy. Because everything hurt and he was fighting to find energy. His body was not absorbing nutrients. He had lost 14 pounds over 8 weeks, he was anemic, and his body wasn’t working well.
The season of trying to figure things out, of trying to find a diagnosis, feels like wandering and smells like a valley. You grope around trying to feel something—anything—familiar. It’s dark and lonely. You want answers. But what you really want is the answers you can choose. Not the ones that are chosen for you.
After an ER visit due to severe stomach pain and dehydration, after scans, blood tests, and finally a colonoscopy, my son was diagnosed with Crohn’s disease. This was not the next chapter I would have written for my first born son. But we turned the page. And this was it.
We saw a pediatric GI and he suggested a diet of Ensure for 6 weeks, and after that to start Humira or Remicade. This seemed like a big jump to some big medicine with some possible big side effects and big transfusions every 6-8 weeks in his little life.
I wanted to talk about diet. I asked if he knew of diets to try since this was a gut issue. He said there was no link between diet and Crohn’s disease. But after one entire year with the SCD diet, I must beg to differ. What he meant was that there is very little research to support the SCD diet. Dr. Suskind, however, is a Gastroenterologist in Portland doing some innovative and ground breaking work in this field, using the SCD diet to put Crohn’s into remission.
We started researching diet for Crohn’s disease and over and over we ran into the SCD Diet (Specific Carbohydrate Diet) and many testimonies of how the eating plan put several autoimmune diseases into remission.
After just three days on the SCD Diet (mostly bone broth and homemade applesauce the first few days) Robby’s pain went away. Completely. He did have the pain of the “die off” effect that elimination diets talk about as his body was detoxing from carbs, sugar, gluten, dairy, and starches. That was ZERO fun. But he started to heal. Quickly. Because food matters and is amazing.
The SCD Diet comes from the book Breaking the Vicious Cycle. Elaine, the author, is a magic princess who wears a cape and saves leaky guts, friends. This diet is intended mainly for things that fall under IBD (Inflammatory Bowel Disease) such as: Crohn's disease, ulcerative colitis, celiac disease, diverticulitis, cystic fibrosis and chronic diarrhea. However it is a very healthy, balanced, and safe diet that has health benefits for everyone. Research is showing how it is helping those who have autism and ADHD.
Today, Robby has been on the diet for over one year and he is enjoying new foods, new textures, new flavors. His weight is back and then some, and he has come back alive socially, he is hilarious, he is pain free, his bowels are working just as they should. As a 7th grader this fall, he asked to not only play soccer, but to run cross country, too. This was after he asked to move up to Honors English in the Spring because he was feeling under-challenged. I only share these things to say that he is living a full and energetic life in fantastic health. I am so incredibly proud of him. A strange diet in middle school can be extremely challenging. Middle school is strange enough.
His inflammatory markers continue to go down and his blood work looks really great according to his last tests a few weeks ago.
My son has Crohn’s Disease, and he is on zero medicine. ZERO. His diet is his medicine and we cannot be more convinced. We found Dr. Watts, in Waterville, to assist us in our journey and she has been an actual angel, suggesting the SCD diet right away, which we had just begun. Also, our community has been amazing. So many people have made SCD legal foods, bought his favorite snacks for him, and so many have baked new things for us, I could just cry. The crazy thing is, you can eat all the good-for-you food you want, but if your gut is not healed and healthy, it DOES not matter. We need healthy guts first. I’m telling you, if you have any bowel or gut issues, this diet is amazing.
The journey has NOT been all unicorns and rainbows. Somedays he doesn’t want anyone to point out his food restrictions, he wants to blend in, and he just wants to be as normal of a 12 year old as he can. Other days he’s really chatty about the SCD diet. Being 12 and having Crohn’s is hard, but this guy’s attitude has risen above it all. Each week has gotten easier and our family has adjusted really well. But those first 2 months? For the birds, to be sure. It’s incredibly hard to flip your entire pantry, fridge, and lifestyle. I cried most days in the kitchen while my son missed pizza. But if you ask him if he would do it again the same way, he would say yes. He would go SCD.
This next section is the nitty gritty tips and tricks and my personal favorites for SCD. So if you wrestle with gut health or have any of the auto immune diseases I listed above and are considering the diet, here are some tips after living the diet through all four seasons:
—Start with the Breaking the Vicious Cycle book. It is your BEST FRIEND. This will give you everything you need. Beware: you will live in the kitchen for quite some time getting your bearings. I’m sorry. But it gets better.
—The second helpful resource was this. It gave us a day by day meal plan. Thank you, Jesus.
—SCD consists of Illegal foods:
*no sugar (honey only—no maple syrup, no coconut sugar, no other sugars. HONEY. That is it.)
*no dairy BUT you can have cheeses aged over 30 days, so all the really yummy ones and you can make your own yogurt and have that too!
*no starches (so no potatoes, no rice, no tapioca…no binding agents that help things stick together)
*no gluten
Legal foods:
*monosaccharides only: “simple sugars” or foods that break down very easily in the gut and do not cause inflammation which are:
*fruits
*vegetables (no potatoes or sweet potatoes as they are starches)
*meats
*aged cheeses
*24 hour homemade yogurt
*nuts
—Learn to google any ingredient, followed by “SCD Legal” and this will also save the day. For instance googling: “Coconut Sugar SCD Legal” will tell you if it’s legal or not. It is not. Honey. That’s it.
—Find support. Our close friends and family started to ask about his diet and joined in making foods he can have. It has been amazing! Our dear friends also bought the yogurt maker and he can have yogurt at their house, too. BLESS THEM.
—Buy a yogurt maker. It’s really pretty on my counter (that matters, folks) and we make yogurt every three days or so. Just don’t forget to add the starter. Or you just warmed and curdled milk on your countertop for 24 hours. I have done this over 5 times. Awesome.
—KETO is the closest thing to the SCD diet. The Keto diet on pinterest is really adaptable. My son has a No-Dough pizza often from Rapid Fired Pizza in town because Keto is all the rage. He also has a Chipotle Salad Bowl: Carnitas, Cheese, Guacamole, Salsa, Fajitas. And Jimmy John’s Unwiches are recent in his life, too.
—Because he can have no sugar or sweetener besides honey, he can’t get ice-cream in the summer with friends. But call your local ice cream shops - they might be like ours! The Frosty Fair and The Sundae Station have made Robby a popsicle he can have, as well as apple cider slushes he can have. Apple cider - he LOVES it. And it’s legal.
—Our favorite and easy go-to’s: Tropical Smoothie is awesome - just substitute the turbinado sugar with honey, which they totally do! We love Spindrift, Cheese Wisps, Fruit leather, PaleoKrunch Granola, some Lara Bars, and some RX bars for things on the go. I’ve learned which meats contain zero sugar or starches and what salsas are sugar free. Thanks to Whole30, which really normalized finding clean products.
—Start reading all labels…or stick to things with 1-2 ingredients :)
—Packing lunches for Robby typically look like: a salad with mixed green with added cut up turkey, cheese, and sunflower seeds and our new favorite Tessemae’s honey poppyseed dressing. We also pack slices of salami, grapes or apples or fresh fruit, carrots and guacamole, cheese wisps, cashews, and fruit leather.
—I highly recommend getting a food allergy test. Our naturopath had one that tested for 144 things and we found 6 items Robby is allergic to, which we avoid because they cause inflammation. Corn sugar was one of them (which is corn syrup, code for IN EVERYTHING)
—Favorite Websites for baking and cooking (because almond flour and coconut flour wear capes on this diet and these websites save the day):
Against All Grain is an amazing resource - just put in SCD in her search bar. Her blender bread is amazing!
The Seiffert’s Top Ten SCD Meals We Make
Chicken pot pie soup and Seiffert SCD Fathead cheese bread *see below
Spaghetti squash and sauce
Lettuce wrap smash burgers (burger, bacon, Trader Joe’s legal mayo, mustard, tomato wrapper in lettuce
Cheddar broccoli soup (we skip the cream) with biscuits
Applegate Hotdogs, applesauce, salad
Breakfast night: eggs, waffles/pancakes, bacon, smoothies
Steak salad (steak, romaine, gouda cheese, tomato, etc)
Taco Tuesday (make your taco seasoning because they all have asked starches as anti caking agents) with zucchini tortillas
Rotisserie chicken (Kroger, organic with no other starches in it), roasted veggies, especially butternut squash with some honey and cinnamon
*Seiffert Fathead Dough
16 slices provolone
2 eggs
1/3 cup coconut flour
3/4 tsp baking soda
1/4 tsp garlic powder
1/8 tsp salt
2 tbsp Olive oil
Preheat oven to 375.
Melt provolone in microwave safe bowl. Meanwhile whisk eggs together. Then add dry ingredients to egg mixture. Mix. Add this egg mix to the melted provolone. Now mix together...you might end up using hands to really mix it...like a wet dough. Which sounds gross but it’s real. Drizzle an iron skillet with 1 T of olive oil and press dough into skillet. Drizzle remaining olive oil on top. Bake at 350 for 15 minutes. This comes out and feels like garlic breadsticks. Or a pizza dough base. Or shape into other possible dough things like bagels. We cut into rectangles and dip into marinara. You’re in charge.
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Thanks for making it this far! I hope this blog is a resource to you or someone you love!
Happy Gut Health,
Amy