What do Venus Williams and I have in common?

The answer is definitely not the level of our tennis games!  The answer is that we both have autoimmune diseases. Venus Williams gave a delightful interview on Morning Joe today.  She has been playing tennis since she was four and her inner fashionista probably started developing around the same time!

As a person who had a eight year journey of misery to be diagnosed with celiac disease, I was surprised to learn that it took seven years for Venus to receive a diagnosis for Sjogren’s Disease.  And, like me, it took getting very sick before doctors finally connected the dots to diagnose the problem.

Like me, Venus said a diagnosis was a relief because knowing what is wrong helps you address it and start on a path back to health. With an autoimmune disease, you have to accept your symptoms, your body and your treatment.

Venus has addressed some of her issues through her diet. I addressed all of my health issues with a dietary change. She called herself a “chee-gan,”  which stands for a cheating vegan.  I can’t cheat, the results of eating gluten are so unpleasant.

I starting thinking about how the long length of diagnosis of an autoimmune disease might be a common thread across the spectrum of autoimmune diseases.  This leads me to believe that we do not have enough physicians who study autoimmune diseases as an entire class of medicine or who become autoimmunity experts.  We have experts in each disease, much like we have doctors for each body part.

Our overall system is not built in such a way to address the whole person, but there are rare systems like the Cleveland Clinic which offer a more holistic approach.  The journey from internist or pediatrician to body part doctor to disease specialist doctor to psychiatrist if you are a woman because you are often told it is in your head, is challenging and expensive.  But, it also takes a long time and that doesn’t help over all health.

Our pediatricians and internists aren’t thinking about autoimmune diseases when sick patients present with a myriad of symptoms or conversely, with a couple of severe symptoms.  I presented with terrible anemia during pregnancy and dangerously premature deliveries, should my gynecologist have recognized these as celiac disease?  Maybe if celiac disease had been more than one paragraph in a medical book next to a picture of a child with a bloated belly and wasted limbs, he might have ordered a blood test after I turned up anemic in the first trimester.

But, I was anemic in my early twenties and was told my horrible fatigue was all in my head by my internist.  Venus said she just didn’t feel right.  I said the same thing to my doctors.  I trudged from that internist to a gastroenterologist to a new internist to a new gastroenterologist to a new gynecologist over the course of those eight years.  No one ever said, “maybe we should test you for celiac disease.”

Two things would make me happy.  The first is that autoimmune diseases should be addressed thoroughly in the education of our medical professionals. Just knowing about the diseases and the interconnectedness of autoimmune issues would be a huge start.  Understanding by medical professionals that if something is “off”  with the patient or they present with lots of uncomfortable symptoms, the immune system might be having a break down.

The second is that nutrition and food choices should be explored as part of our problem and part of our solution in the education of our medical professionals.  There is a reason why autoimmune issues and food allergies are skyrocketing.  What we put into our bodies has a huge affect on our health and wellness, food is a part of the problem and can be the solution.

Having an articulate, talented and beautiful woman like Venus Williams speak out about her autoimmune challenges is wonderful for awareness, hopefully none of her doctors told her that it was all in her head.

Kendall Egan

 

 

About that healthy diet…

How will my kids know all the good things that go into their food if I don’t tell them?  How will they replicate the healthy eating in their own cooking when they grow up?

I had this lightening bolt when I spent over $13 for organic apples at the grocery store the other day.  Yes, that is a lot of money for apples and to be fair, I did buy enough to pack lunches for a whole week, but that is beside the point. I buy organic apples because conventional apples are on a “dirty dozen” list for foods with the most pesticide use.

On the flip side, I don’t buy organic bananas because I’ve read that due to their peel and the way they are grown, organic is not necessary.   If I don’t tell my kids about this, how will they know that I have tried to shield them from extra pesticides and that they should think long and hard about organic produce in their lives.

I leave the cinnamon next to the toaster because cinnamon is a spice that is anti-inflammatory.  I sprinkle it on my toast every day and use it a lot when I bake.  They think it tastes good, should I tell them?  The same goes for the turmeric that I put into chicken noodle soup or rice side dishes…do I explain the healthful benefits of turmeric?

What about the homemade cookies loaded with walnuts because of the high omega-3’s? There are so many other things, like vegetable purees and fresh herbs, that go into my food for taste and other health reasons.  I put garlic in almost everything and make my taco filling with tomato paste just to sneak in a vegetable.

And, is there really any science to eating a gluten-light diet if you do not have celiac disease or gluten sensitivity?  My whole family eats gluten-free pasta and gluten-free homemade baked goods.  When I make stuffing, it is gluten-free.  When I make basically anything for dinner, it is gluten-free.  Does this benefit the rest of my family in anyway?

Obviously my son and I must eat a gluten-free diet, but the rest of the family does “gluten-light” during the day and gluten-free for breakfast and dinner.  I just wonder what will happen when they go off on their own….

Kendall Egan

Add Korean Food to a GF diet!

I had always thought Mexican, Thai and Vietnamese were the best options for eating out naturally on a gluten-free diet.  I discovered this week that I could add Korean food to the mix.

The diet is largely soy based.  From pastes to sauces soy is the major ingredient.  Unlike other “soy” sauces, it appears that Gan-Jan is soy and salt and that is about it.  The Guk-Gan-Gang is a lighter dipping sauce version.

Another key component is red chili which gives the food a delightful kick.  The small dishes to start the meal are all fermented basically with garlic and chili.    Cucumber, cabbage, bean sprouts and daikon, were placed at the table each with a varying degree of fire.

What I love is that every cuisine has its unique and beautiful presentation as dishes are presented at the table.  Korean dishes arrive bubbling in a bowl or crackling on hot stone plates to give a crust to the rice or protein…truly beautiful.   We ordered so much food and yet I did not walk away unpleasantly full.

It helped to go to lunch with a native Korean who knew about my gluten-free diet for the past 17 years and she pointed out the two things that I should skip.  The Scallion Pancake was one of them but it looked so good that I am going to find some Guk-Gan-Gang and make a gluten-free version at home.  The recipe looks really simple and I think I could make all kinds of quick and easy dinners with different ingredients!  The other was dumplings, which I don’t mind skipping.

We did not order dessert and we did not order drinks.  I could have used the Korean version of a Thai tea to cool down my mouth!  Next time I will peruse both options, and it will be soon because the food was fresh, healthy, spicy and so good.

Kendall Egan

 

 

Sneaky Celiac Chef

Like every mom, I try desperately to increase the fruits and vegetables in my family’s diet.  Cauliflower is something that would NEVER get past anyone’s lips unless it was heavily disguised, like in pureed form in a tray of homemade baked mac and cheese!

Multitasking counter over here.  The start of the cheese sauce is on the stove, the puree of cauliflower is waiting to be added and the gluten-free breadcrumbs are toasted with butter and waiting to garnish the top of the pan.

bread crumbs and cauliflower

The raw ingredients wait on counter #2.  Flour thickens the sauce and the pasta is awaiting boiling water!  Land O’ Lakes American cheese really does make the creamiest cheese sauce.

gf ingredients mac

I cook the pasta with the al dente directions so it will hold up in the cheese & cauliflower sauce.

pasta

All ready to go into the oven for baking…you can’t see, smell or taste the cauliflower.

pan of mac

I served this with baby carrots, the one vegetable all of my kids will eat.  Little do they know that they had two servings of vegetables for dinner.

emply pan of mac

Kendall Egan