There are three major components to this blog. The first is about my life and that of my family's (this is a blog after all, what's a blog without life?). Mainly, it is our story about recovering our son from autism and accidentally helping myself and some other family members in the process. When I read about things parents were doing to help their autistic children, I was very skeptical. So I spent my lunch breaks online digging in medical journals, looking up everything and trying to understand how it could work. There are PILES of information that is not only helpful to my son's condition, but so many autoimmune issues and chronic problems that are considered untreatable. Time after time the phrase "Holy Crap, everyone needs to know this!" would come to mind (and I thought about calling my blog that). So, the second component of this blog is the research I came across. The third component, if you haven't noticed yet, is recipes. Most of my recipes are for the Specific Carbohydrate Diet, but some are just grain-free, gluten-free and bakers yeast free. I will always try to mark them in the title (SCD, GFCF, etc.). So here's a briefing on each of these components:
I have been a passenger on the Autism Spectrum my entire life, although I am neurotypical (and dully so). My mother has a touch of it and my brother is either a high functioning autistic or a disabled Apsie. Growing up, I had no idea my family was autistic, I just knew our household was wired differently than others. Before friends came to my house I would try to give a "heads up tutorial" on what to expect. If I did not get a chance to do so, I would notice a "What's wrong with this picture" look. After a few minutes though it would subside and people truly seemed to enjoy my family. We moved around a lot, and I had never run across anyone else, at the time, like my family. In the early 1990's I had taken a course on Human Exceptionality at the University of Utah. I did my final paper on Autism and it was exciting for the professor to have a student with an autistic sibling, since it was so rare.
Our son was born in 2005, very neurotypical. He was a smiley , gregarious baby that would work a room to get attention. Speech came at six and a half months, and all other milestones came right on time. However, he had horrible gi issues from one week of age. They all kicked off with a case of conjunctivitis that was cultured and came back as "allergic". "But what would a one week old baby be allergic too?", was the response as the doctors shrugged it off. He began crying in twelve to sixteen hour bouts and was not thriving on breast milk (they decided my milk was bad). It was going to be written off as colic, but I saw a poster for GERD, obscurely behind one of the doors at the doctor's office, and noted he had most of the symptoms. Treating for GERD seemed to get everything under control, he was on expensive hypoallergenic formula, Zantac, and rice mixed in with everything to keep it all down, but it worked. He did have constipation issues and whenever I tried to introduce other grains the reflux and constipation became horrific, taking about two weeks to recover. At 18 mos of age he spent a month on antibiotics and fighting off sinus infections and strep. He quit speaking and sleeping at night and was a cranky child. Over the course of the year, and several more bouts of strep, flu and respiratory infections, he had lost play skills, eye contact, interest in affection, and mostly stared at lights and threw lots of tantrums. It was a rough time for us.
As I ran across information on biomedical treatments for autism, I also ran into a brick wall with doctors. In our neck of the woods it is frowned upon, even the diet. Our son was two and a half and non-verbal at the time. If we tried something and it hurt him, how would we know? So I read everything I could get my hands on and dug in medical journals. I needed to understand how the immune system works and what really goes on in a gi tract. I researched so many topics: diets, food allergies, gi bacteria, yeasts, food additives, sugar, probiotoics, enzymes, Omega-3, B vitamins, fats in general, carbs in general. What I found was amazing and can ultimately affect the health of each of us. What we have been taught to be "politically correct nutrition" may, for some of us, be doing more harm than good, and this IS in medical journals but since it goes against government dietary guidelines, you don't see it. I am trying to compile research links in a useful format. Each will have my synopsis, which I beg of you not to take for gospel since I am not a doctor. Treat anything I have to say as equal to a zealous third grader. It is my hope that you will scroll to the bottom of my research papers and review the med journal articles for yourself. It is also my hope that it will give you a means to discuss your concerns with your doctor. If you say "I read about omega-3/diet/whatever in an article" you doctor's tone is likely to get condescending real quick. If you say "Here is study, published in X medical journal from John Hopkins University about X", then your concern is more likely to be viewed as valid. I have a hectic schedule so it may take awhile to get everything on here.
Now to my favorite component: Recipes. I do have a short food resume. I have worked as a studio Hostess at a high end post production audio facility in Hollywood (which means a place that does voice over for films and commercials). My sole job was to prepare fun beverages and snacks for clientele and talent. I got to make munchies and lattes for James Coburn, Robert Mitchem, Rosanne Barr, James Earl Jones, etc. It was a great job. I then moved to Atlanta, GA for the next 12 years. I would usually have a part time job a few evenings a week making desserts for restaurants and coffee shops, usually my own recipes. I was also a part time personal chef for a dear family for six years. I got to cook for their family celebrations and client dinners. Basically, I know my way around a kitchen. I still found the Specific Carbohydrate Diet (SCD) difficult at first. About the time I had gotten the hang of it, we got our son's ELISA food allergy panel back. We had to pull more items from his diet and everything else had to be rotated. I was beyond OVERWHELMED! Luckily the nutritionist we were working with helped us with planning. By this time I had noticed that I had issues with gluten and bakers yeast. A year later I was diagnosed with Celiacs disease and Crohn's (although the Crohn's appears to be confined to throat ulcers and a yeast allergy). It was a relief to know what had been troubling my own health my whole life and I was a "diet responder". It was easy to say "Goodbye and good riddance" to gluten and bakers yeast.
I'm a raging foodie. I find it funny how people just assume that making a diet change like I have means I'm just not that into food. "I would never give up X! Oh, come on, you've got to live life and enjoy it!", they say. That's the thing, it's hard to enjoy my life while eating these foods. They still don't get it. So I liken it to owning a gallbladder/appendix/uterus. No one says, "Hey I think I'd like to get my body part removed". But when it causes so much grief that your life is hindered by it then it's "Maybe owning a uterus isn't what it's cracked up to be". Needless to say, I have come to enjoy the food (and health) on the SCD and GF diet. There's a story I liken to learning a new diet. It was a scene recanted to me that was observed in a convenience store. There were two employees at the cash register. One was a new trainee trying to learn the register and getting so frustrated that he threw up his hands. The other employee, a large-set black woman, in a cool and wise tone, said to him "You like to eat don't you?". My response would be "Yes ma'am I do".
So here's to good health and finding lots of great food to eat!
I love your blog Mrs Ed and am thankful to you for posting so many great articles and your research. God Bless You!
ReplyDeleteMrs Ed,
ReplyDeleteI'm new to following your blog, and I appreciate the personal story you shared. It sounds a lot like what my sister went through when trying to figure out what was plaguing my nephew - he was diagnosed with autism 11 years ago. She read anything she could get her hands on and discovered that he has celiac and a host of food allergies. This lead to me, and several members of our family, to look at our own health and figure out our food challenges. This is important work you are doing - thank you for sharing!
I just found your blog, wow you have great information. My son is biomedical miracle, and considered "recovered" now. Not long after his battle, I found myself sick and in need of biomedical myself! Anyways thanks or writing. You give me great inspiration!
ReplyDeleteThe diets of your household seems to be very similar to mine! I've visited your blog quite a few times before, thanks for visiting mine...I've finally got round to writing it! I've included your blog on my list of blogs I visit it's so informative for people new to the diet :)
ReplyDeleteThanks Vicky, I like your blog and I'm always excited to see another SCD blog.
ReplyDelete