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We Shall Call Her the GF Goddess: Gluten Free with William's Syndrome

jasmine banks

Several years ago a good friend of mine had her life turned upside down. Her eldest daughter was not putting on weight, struggling with some physical developments, as well as experiencing some unfortunate bowel issues. A trip to Arkansas Children's Hospital and a couple of confusing and freaky procedures uncovered what the doctors called CELIAC DISEASE. Turns out this here little disease is a total pain in the ass because well, you can live with it, but if your immune system has prolonged exposure to gluten (the food component that cause the Celiac autoimmune reaction) you can slowly become malnourished. Malnourishment leads to a whole host of other problems and so on and so forth. I remember how overwhelmed my friend was. She had to undergo a total life change. I remember going with my friend's, then 4 year old daughter, to Whole Foods in Little Rock. I remember thinking to myself, "Precious Baby Jesus this Gluten Free food is expensive and difficult" What I learned from that experience was that processed Gluten Free food IS expensive... AND... it doesn't have to be that way.Gluten Free only *appears* to be super difficult, but with some creativity and hard work it can be as easy a lifestyle as any (except for Scientology... there lives will never be easy, nor should it... they believe in aliens and they stole Tom Cruise and replaced him with a pod person- shame on them!). Fast forward to AWBU Conference and I got the chance to sit down with Heidi, from TheBusyNothings.com and hear her amazing story. She told me, as you can read on her blog, about her fabulous son who has Williams Syndrome.

Say what? William's Syndrome, you ask? NEVER heard of it? Allow me:

 

Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.
Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.

But there are major struggles as well.  Many babies have life-threatening cardiovascular problems.  Children with WS need costly and ongoing medical care, and early interventions (such as speech or occupational therapy) that may not be covered by insurance or state funding.  As they grow, they struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. And as adults, most people with WS need supportive housing to live to their fullest potential.  Many adults with WS contribute to their communities as volunteers or paid employees, for example working at senior homes and libraries or as store greeters or veterinary aides.

Just as important are opportunities for social interaction. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression.  They are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often don’t process nuanced social cues and this makes it difficult to form lasting relationships.

That is just the overview per Williams-Syndrome.org There is a whole lot more to learn about the syndrome and you should totally check out the link and get educated.

Because Sum, Heidi's super cute kid, has Williams-Syndrome he also has a genetic cursor a lot like Celiac's Disease. Being the totally dedicated mom that I am learning Heidi is, Heidi decided to embark on GF. I plan to refer to her from this point on as "My GF Goddess." I will be all, oh Heidi, you know, my GF Goddess friend (fill in the blank). I was utterly impressed with Heidi and her passion for standing by her little man Sum and stretching herself to do what she believes is best for him. The thing about motherhood is it is ALREADY so STINKIN' difficult that any mom, like Heidi and a few other friends of mine, who have a child/children that will have non-typical childhoods because of medical issues.... well damn! Her rough days are going to sometimes be rougher than mine. I am going to try and remember that. So I hold my hands out to Heidi, in love, respect, and support. I hope you will too. You can find her HERE.

Heidi. You are a kickass mom who is not alone on your journey- not in the virtual world or the real one!

 

HERE is one of my favorite GF recipes of all time, revamped for my friend the GF Goddess, make something sweet for yourself. You deserve it!

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Coconutty Cupcakes

  • 1 dozen eggs
  • 2 cups coconut milk
  • 3/4 cup honey
  • 2 teaspoons vanilla extract
  • 1/2 teaspoon coconut extract
  • 1/2 teaspoon orange extract
  • 2 cups coconut flour
  • 1/2 teaspoon baking soda
  • 1/4 teaspoon unrefined sea salt
  • coconut oil, for greasing the pan
  • 24 cupcake papers
  • cupcake baking pan

Instructions:

1. Preheat oven to 350 F

2.Add all wet ingredients (Milk, honey, extracts,eggs) in an electric mixer to combine

3. Sift remaining dry ingredients and slowly combine with wet with electric mixer on low.

4. Use an ice cream scoop to fill cupcake papers

5. Bake 35-40 mins or until cupcakes are light brown and set in the center.

Cream Cheese Frosting Frosting

  • 8 ounces of cream cheese, softened
  • 4 ounces (1 stick) of butter, softened
  • 3 3/4 cups of powdered sugar, sifted
  • 1/8 teaspoon of salt
  • 1/2 teaspoon of vanilla

Instructions:

1. Cream (whip) together butter, cream cheese, salt and vanilla

2. Pre-sift Powedered Sugar

3. With mixer on low slowly incorporate the sugar into the creamed ingredients

4. Frost on cooled cupcakes