Since starting the Specific Carbohydrate Diet (SCD) in an attempt to heal my 7-year old daughter's Inflammatory Bowel Disease (IBD), I've gotten lots of questions from friends, family, teachers...everyone we know, really. It's a very restrictive diet...not easy to explain and very hard to stick to. The response I hear most often when I tell someone about the diet is something to the effect of, "I don't know how you do it. I could never do that. I don't have enough willpower." My response to that is very simply, "Of course you could. And if it was your child, you would." It's not easy, but truly, anyone can do this.
I won't go into a detailed explanation of the diet here...there are plenty of websites already doing a great job of that. What I am going to do is break this down from a parent's perspective. I'm going to tell you how we ended up choosing this diet, how we implemented it and what the results have been so far. If you want more specifics about the diet itself, I recommend reading either the book or the website called, Breaking The Vicious Cycle. Both include the history and science behind the diet, as well as, detailed lists of legal vs. illegal foods and some recipes to get you started.
Now keep in mind as I give you my thoughts on this diet, that I am not a doctor or a nutrition expert. What I am is a mom on a mission to help my child beat IBD in the least toxic way possible...given the information and resources I have available. I'm open-minded, but skeptical...willing to acknowledge the pros and cons of any treatment and willing to do whatever it takes to heal my child.
Why did we choose the Specific Carbohydrate Diet? In a nutshell, the SCD is based on the premise that IBD and other gastrointestinal problems are caused by an overabundance of bad bacteria in the gut. In theory, by sticking to this diet, you essentially starve the bad bacteria, thereby restoring balance to the gut and "curing" the disease. The problem is, there haven't been any significant studies that can tell us whether or not this theory is true. Many people swear by the diet, but there are many who claim that it simply doesn't work.
So why bother with it? To that I say, why not? It's not perfect, but it's an option. Just because it hasn't been scientifically measured and proven in large scale studies, doesn't mean it doesn't work. It just means there hasn't been enough research to prove that it works. Maybe it doesn't even work for the reasons people think it works. Who knows. Who cares? The point I'm getting at here is that we had nothing to lose by trying it.
In my last post, I mentioned that my daughter flared after her first round of 5-ASA meds failed. She was still weaning off her second round of Prednisone when we decided to try the SCD in conjunction with a different 5-ASA drug in order to avoid having to switch her to a stronger medication. Being only seven, she has her whole life ahead of her. Most people don't get this disease until they are in their 20's-30's, long after their bodies have finished growing. Aside from the fear of side-effects, my husband and I worried about what the drugs would do to her growth and development. We also worried that being so young, she might outgrow her meds at a younger age than the average patient and then what would that leave her for treatment options down the road? Our nurse gave us some very good advice when she told us not to "borrow trouble," but when you're making long-term care choices you have to consider what lies ahead. We wanted to buy her some time and maybe the combination of diet and mild medication could do just that. At that point, I was more wishful than optimistic and definitely skeptical about whether or not we could do it.
We were advised by the GI doctor to wait and start the diet when my daughter got down to 15mg Prednisone/day. At that point, she still had 6 weeks to go before she was off Prednisone completely and the doctor felt that the overlap was a good protective measure. We didn't want to risk her flaring again and have to start the Prednisone all over. This approach was a little tricky though, because supposedly, you will know within 30 days if the diet is working or not. I didn't see how we could possibly know anything if she was still on Prednisone and taking a maintenance drug on top of being on the diet, but we figured that if she flared after all that, the diet definitely wasn't working and neither were the meds. But if she didn't flare...we could have some hope.
How did we implement the diet? As a family, my husband, daughter and I committed to sticking with the SCD for two months. I purged my pantry of sugar, grains, soy, starches and all processed foods, stocked up on assorted nut flours and scoured Pinterest for recipes. We started testing new recipes a month before we were scheduled to start the diet. This gave us a chance to find some replacements for the favorite foods we would be giving up. In the beginning, my recipe searches consisted primarily of breakfast replacements like pancakes, muffins and breakfast cookies, as well as, other sweets and treats. Cheesy, comfort foods were my second priority to replace all the pasta and grains we loved. What I quickly learned is that there really aren't good replacements. There are some wonderful recipes that seem like they will be good replacements, but in reality, they are very different from what we were used to. This wasn't such a big deal for my husband and I because we like almost anything, but for my daughter it was tough.
There were a LOT of culinary fails in my kitchen that month. I have never made so many things in a row that just flat out sucked. That being said, I did come up with a breakfast cookie my daughter liked, as well as, homemade breakfast sausage, meatballs, tomato soup and ketchup. Score! I still haven't nailed down a solid set of go-to breakfast foods, but the experimentation continues and little by little, I find winners that my seven-year old will eat.
The hardest part about this diet is that you have to make just about everything from scratch. Processed foods are out, as are canned-goods due to the many hidden additives that aren't always displayed on the labels. Turns out different states have different labeling laws, so things sneak in sometimes and you have no way of knowing. Nice, eh? That's a rant for another day. ;)
I happen to be a stay-at-home mom who really likes to cook, so this hasn't been as hard for me to adjust to as it might be for someone who doesn't cook or doesn't have much time to cook. I will say that at this point, I spend a lot of time in the kitchen and more time thinking about food than I care to admit. I am hoping that through this blog I can share some of the lessons I'm learning and help simplify things so that it becomes an option for anyone who wants to try this diet...whether you are a college kid in a dorm with just a toaster oven and a crockpot or a working parent who barely has time to bathe, let alone cook everything from scratch.
How's it going? The good news is that my daughter is still in remission and has had no further complications since starting the diet. It has only been four months and she does still take a maintenance drug, but it is fairly mild and we have not had to step up to any stronger drugs. In my mind, that makes this all worth it. Every day we can keep from adding stronger drugs is another day my daughter can grow and develop normally without risk of side-effects or delayed growth. Our ultimate goal is to bring more foods back into our diet. We have already successfully tested white rice with no increase to my daughter's inflammation. We are working on potatoes now and hope to try oats next. It is a very slow process, but we are also hoping that at some point soon, we may be able to wean off the maintenance drug and just stick with the SCD. I will talk more about that in another post.
I'll wrap this up with a few words of encouragement...the diet does get easier the longer you stay on it. The results are very encouraging and motivating, making you want to stick with it. My daughter has less and less bouts of sadness and frustration over her restrictions and has learned that food can still be delicious without loads of sugar and carbs. (Thank goodness some cheese and bacon are legal!!) There have been some unintended results for my husband and I too, including a nice bit of weight loss, smoother skin and less acne. My husband's blood sugar has evened out and he says he feels better than he ever has. I personally don't feel that different, except it is nice to finally be acne free for the first time since...oh, puberty. ;)
I truly hope this post has inspired you to investigate further or even to try this diet. If you still have doubts, just understand that this diet seems to work differently for different people and you won't know if it can work for you unless you try. You have nothing to lose by trying it and everything to gain. Just be sure to talk to your doctor before you start so that you can work together to do it right. If you have questions or success stories of your own, I'd love to hear them, so please be sure to leave comments and I will always be happy to answer e-mails if you would prefer to talk off-line.
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If you or someone you know has IBD I hope you'll come back often and join me in Fighting Flare. XOXO, Cindi