Specific Carbohydrate Diet Friends Spotlight: Susan “The SCD Girl”

We make it a priority to highlight SCD personalities from across the internet.  We love hearing success stories and want to spread the knowledge of those brave enough to share their specific carbohydrate diet stories.  

This week we are very lucky to have interviewed Susan… “The SCD Girl”.  Her blog details her life beating Rheumatoid Arthritis and helping to curb her son’s symptoms of Autism, all using the SCD diet.  She is a real person, and writes like a real person, and that’s my favorite part about her and her life.  Check out her amazing story and get to

know someone that has had an incredible healing journey.

I really like her site (mostly because I love anyone who digs a Paleo lifestyle), but seriously her writing style is effortless and it is so easy to connect with her life and get into it.  If anything, just take a minute to read her post about the SCD Diet and Doctors (it could save your life, ha-ha).

Just last week my wife and my son picked up colds and I was freshening up on my SCD cold protocol (just in case) and read an awesome older post about dealing with being sick and being SCD.

All in all, Susan is an incredible person and another awe-inspiring SCD story for both her and her son.  If anything, it just plain makes you feel good to read about her adventures in life and all that she has been able to accomplish alongside her son and her husband over the past few years.  Thanks again Susan from all of us that you have helped on the diet so far, this post will surely help a lot more people as they start their own healing adventure.

She has some invaluable pieces of advice down below, so just to make sure you don’t miss them… these are my two favorite nuggets:

“Personally I think everybody goes overboard on cow dairy.” (agreed: enough said)

“And you really do have to test all the foods! Just because it’s on the SCD legal list doesn’t mean it will automatically work for you.” (Thank you for this Susan!  We always advocate that the diet will work, you just have to customize it for what works for your body within the SCD framework)

1: Why did you start the diet (symptoms, health problem)?

Well, this is kind of a long story, so bear with me! Right after my son was born, I noticed some weird swelling on my knuckles. I went to the doctor and she said, “I think you have rheumatoid arthritis.”

At the time, I wasn’t in any pain and I didn’t really know what I was in for. The doctor signed me up to see a specialist. There weren’t very many rheumatologists around, so my appointment was actually months away.

By the time I made it to the rheumatologist, I was already in agonizing pain. I was started on standard therapy, which includes methotrexate, and then sulfasalazine. I was quickly on the maximum dose of methotrexate, although the sulfasalazine seemed to be the medication that actually worked somewhat.

Most unfortunately, I did not improve much. I was diagnosed by the rheumatologist as having “moderate to severe” RA and I spent the next year off and on steroids… I remember being on the phone with the doctor’s office with tears in my eyes to request them on more than one occasion.

I was also experiencing severe brain fog. People literally thought I was stupid, which had never happened before — I was an honor student in high school!

Finally I got sick of not getting any relief from anything, so I started doing my own research at Pub Med. I was a medical editor for a year a while back, so I could read the abstracts and draw conclusions. This is where I first found some small, well-controlled studies linking food intolerances to rheumatoid arthritis and other autoimmune diseases. I started an elimination diet I found online (The McFerran diet (link: http://www.frot.co.nz/dietnet/reviews/mcferran01.htm); he comes off as a bit of a nutter so I have no idea why I decided to try this one), and it was amazing. The swelling in my hands went down almost overnight. My doctors had often talked about “flares” and I thought I had never had one because how could my pain be worse? Once the swelling went down, I realized I had basically been in one constant flare since my diagnosis.

I found the SCD after my son was diagnosed with autism at the age of three. I had already been off gluten for years at that point, so I had already heard about the gluten free casein free diet as a treatment for autism. We did take my son off gluten, and it made a difference, but I felt like something was still missing.

Strangely enough, my good friend’s mother had heard of the SCD diet. She pointed me to Pecanbread.com and that’s how we got started. Once I started reading more fully about the SCD and how it’s been used to treat colitis and Crohn’s disease, I realized that sulfasalazine had probably been working on my own silent gut dysfunction, and my son had ALWAYS had digestive problems along with his autism (which is common). I also read about how antibiotics can screw your digestion up, and I was on antibiotics all the time as a child. I figured my son had inherited my screwed up digestion. So we both went on the diet together.

2: How did the SCD Diet change your life?

Well, at first, the sugar withdrawal was so bad, I thought I was gonna die. Remember, I was gluten free before. Guess what? A lot of candy is gluten free, and I knew them all! LOL. But once I got past the first week, I experienced a remarkable decrease in disease activity, as far as the rheumatoid arthritis goes. After going gluten free I was able to discontinue steroids, BUT after I went on SCD, I actually ended up not needing any medication at all for a full year!

My son really does a lot better on SCD. He is sensitive to so many foods (even many which are SCD legal), and he’s more focused and aware of everything. He has been mainstreamed into general ed classrooms now for the last two years and he’s turning into a remarkable, smart little boy.

3: What was the biggest challenge you faced on the diet and how did you overcome it?

The biggest challenge is probably school! Well-meaning adults have made mistakes at various times, and so has my son. We explain that my son cannot have any food that is not from home, but things do happen. One time he told us he ate part of a candy cane. We weren’t sure whether or not it actually happened, but that afternoon he spent a lot of time sitting on the toilet, so I’m pretty sure it did happen! Another time a teacher gave him raw carrots (we were only sending cooked carrots from home). My son is very good about turning down candy and snacks for the most part though, and by communicating with the school, things have gotten better. His speech class had a party for the end of the school year last year, and the speech teacher called and told me so — 10 minutes from the time the party was starting. I ran over with a couple of SCD legal cookies, so a disaster was averted. 🙂

4: What is the number 1 piece of advice you would give someone thinking about starting the diet?

Don’t be afraid to make mistakes (because you will make them), and prepare to be surprised! For example, one time I gave my son some raw lettuce about a week after we started the intro diet. He immediately had diarrhea and I was amazed! Once you remove a lot of the constant irritants to your system, suddenly you will notice these things that you didn’t notice before. Something similar happened to me once I tried almond butter. These little experiences let us know that we were on the right track. And you really do have to test all the foods! Just because it’s on the SCD legal list doesn’t mean it will automatically work for you. Personally I think everybody goes overboard on cow dairy. I myself cannot tolerate cow dairy for example, and ASD kids should generally avoid it as well.

And if there’s room for a number two piece of advice, I would say cook in bulk! You will make yourself crazy if you try to cook at every meal. I cook in bulk all the time and it has saved my sanity. It has also made it easy to just grab some food and take off for wherever we’d like to go.

Yes, my son has his days where he wishes he could have mac and cheese. I tried to make it for him with goat cheddar and spaghetti squash and it was really good! But he didn’t tolerate it. Moments like that can make you sigh, but for the most part, I don’t feel limited at all eating this way, and most of the time my son doesn’t feel like he’s missing out either — he gets an almond butter brownie every single day!
I’m no longer a slave to junk food, my rheumatoid arthritis is under control, and my son is present, alert, and aware. I feel very fortunate indeed.

🙂

Thank you Susan, you are incredible!