The Celiac Goes to Basketball Camp

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He should be arriving right about now.  Lunch is served in the cafeteria of the university hosting camp.  The celiac is a rising sophomore who got a spot on for the varsity basketball team summer camp.

This is a new phase of managing the diet for me.  I really don’t want to manage his diet anymore because in three short years he will be a rising college freshman somewhere who has to fend for himself entirely.  On the flip side, I would help him through the initial phase of learning the dining halls of whatever university he attends and so I helped out a little bit here.

On Monday I left a message for the director of dining and on Tuesday morning she called me back.  Here is the good news, they know all about celiac disease and gluten intolerance.  She chuckled as she asked if my son is likely to hit the salad bar, knowing full well that a perenially hungry basketball player needs more sustenance.

She informed me that they had gluten-free bread and gluten-free pasta in the cafeteria. Typically for camps they do not make gluten-free pasta if they are offering a pasta bar, but he could ask for it.  The same goes for bread at the grill for burgers and chicken.

She also gave me the option to have specially prepared meals, such as a chicken breast, a baked potato and a sauteed vegetable, waiting for him at meal time and he would just have to ask for it from any of the kitchen staff.  My son declined that option and I think that is the right decision.  In the real world you aren’t going to have every meal specially prepared and waiting for you.

It might be a weekend of omlettes and bunless burgers for him if he chooses.  He might have pasta, if he decides to ask for it.  The bottom line is that he has options and the ball is in his court for the next three days.  Of course, he also has a stash of 30 protein bars in his bag and if he wants to live on those, that is okay too.

Kendall Egan

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GF Panko Crusted Cod

I aim to serve fish as many times per month as I possibly can.  Everyone in my family eats it without complaint so it is high on my “happy and healthy” dinner choices.

I try to buy non-farmed varieties and I really try to pick a fish that has not come from the other side of the world…somewhere up and down the eastern seaboard is just fine with me.  I do pay attention to the heavy metal and overfished warnings as well.  And finally, I take a look at the price.  Sometimes the filets are more expensive than prime beef!

Whole Foods had some beautiful cod filets last week and they are much easier to cook in a saute pan versus a grill so it was perfect for a cold winter evening.  I bought enough to feed the five of us.  For this dinner, I used the Aleia’s Panko to make a fantastic crust for the filets.

aleias panko

A quick rinse of the filets and a dredge in seasoned gluten-free flour starts the process. I am a big fan of King Arthur’s Gluten-Free Flour for things like this because I only need to add a touch of salt, pepper and garlic powder and it sticks like regular flour.  I then dunk the fillet in an egg white and milk wash and mash it into the panko.

One thing that I think is really important is to rest the filets with the crust on it so that they dry a bit.  I find that it helps the crust stick to the fish.  The other important things are a hot pan, good oil and only turning the filet one time!

We have everything from tartar sauce and lemon wedges to siracha, cocktail sauce, ranch dressing and wasabi mayo on the table for dipping sauces.  I never much cared what the kids put on the fish, I only cared that the ate the fish!

The panko crust is absolutely perfect and no one asks, or cares, if it is gluten-free.  I know it is, but the crust is also a lightly toasted, golden brown with a crackly crust holding together a flaky white fish filet.  Yum!

Kendall Egan

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

 

 

A new phase…the celiac high schooler

Raising a celiac child really adds a layer of trial and error to an already full plate of trial and error.  And thus, my son and I enter a new chapter as he figures out high school and celiac disease.

The daily lunch routine is no big deal and his social life is pretty easy since all of our pizza places have a gluten-free option and Chipotle is every teenagers dream meal.  The movies do not present a problem and as far as I can tell, the drinking scene is not that appealing to him yet.

Where I am worrying is all the team bonding dinners around athletics.  He is a very good athlete so I never worry about him getting picked on or teased for his diet.  But, at the kick off BBQ for football, he literally had a plate of meat.  To me it was gross, I put a chicken breast on a salad and had a balanced meal.  He had a chicken breast, a bunless burger and two bunless hot dogs washed down with a couple of sodas.  Yuck.

The first team dinner was a carbo load, gluten-avoider’s total nightmare.  Three types of pasta, breaded cutlets, brownies and garlic knots with a small tray of caesar salad with croutons.  I volunteered to bring a tray of penne alla vodka and brownies so that he could eat something.

My son and my husband thought I was nuts to go to so much effort.  My son insisted he would just get a pizza later.  But what I explained is that the mom who was hosting would feel so bad if the kid who had three touchdowns the week before had nothing to eat and was just sitting there…even if he looked like he was having fun.  What I said was that he would stick out more if there was a huge fuss made around preparing something different from her kitchen that he could eat.

In the end, the hostess has two nieces who are celiac so she understood the whole thing and asked some great questions about keeping the spoons from the other pasta out of the gluten-free pasta.

Yesterday I stocked up on gluten-free brownie mix and gluten-free pasta.  I think I will just bring a dessert and a 1/2 tray of some sort of pasta to the team dinners.  I might even work out a special football order with one of the local pizza places so that whomever is ordering can just order the “GF Football Dinner” for one.

First dinner went off without a hitch.  He ate and had a blast with his team mates.  I will have this all perfected after a bit of trial and error.

Kendall Egan