Cocoon

Matt has Alopecia Areata, an autoimmune disorder where the body attacks its hair follicles.  In junior high, he lost patches of his hair.  A year later, his hair grew back and he has been in remission until this year, when it started falling out again.  Within a few weeks, he had to shave his head (see the post from March).  

Pretty soon, Matt has a full blown attack of alopecia.  We like to call him "the hairless wonder" ;-).  

When Matt started losing his hair, we were hopeful that it was just going to come back, like it had when he was in junior high and his alopecia first occurred.  As I said, it has gotten progressively much worse though, and the dermatologist pretty much told him his hair is a “lost cause,” at least for the time being. 

We were ok with that because it’s just hair … but then his eyebrows/eyelashes/nose hairs started falling out.  When you don’t have eyelashes, your eyes get dust in them.  No fun.  We have had several people suggest a naturopath, so we decided to give it a try.

Matt was very impressed by the naturopathic doctor he saw.  Dr. Tony Mirczuk did several “muscle testing” exercises and took a full history from Matt.  For the first time in Matt’s entire life, a doctor finally said, “kids don’t get heartburn … if you have been having GI problems since you were a child, there is something wrong with your gut.”  FINALLY.  Every other doctor Matt has ever seen has told him that his intermittent yet chronic & severe heartburn and associated back pain was “stress related.”  We know stress adds to it, but that’s not the only cause, we just know it.  Like Dr. Tony said … “kids should not get heartburn.”

He basically told Matt that while his physique is perfect and he appears in perfect heatlh according to most people’s standards, that his body is telling him that he is actually not well.  His own body is attacking his hair follicles; periodically he is up all night long with intense heartburn and back pain … it’s not a healthy picture.

We are all in agreement that alopecia is a genetic autoimmune disorder; but what most people suspect about autoimmune disorders is that certain things aggravate them and cause symptoms vs periods of remission.  The trick is to figure out what is causing the flare ups.

The doctor did not promise to fix the baldness.  But he did say that he had some strong feelings about how to make Matt’s body significantly healthier, which he hopes will cause his alopecia to go into remission.  We figure, we have no reason not to try his advice.

Matt and I went together to the appointment where the doctor revealed his findings and recommendations.  I went into the appointment prepared for him to ask Matt to give up something from his diet.  My list included: soy, corn (aka all corn syrup products), gluten, or dairy. 

I was trying to think of which one of those things would be the “easiest” for our family to give up.  But then, I sort of got blown out of the water at the appointment. 

First and foremost, he said that Matt is chronically dehydrated … too much coffee, too much beer, not enough water.   Matt is now 100% off all alcohol, he can have 8 oz of coffee a day, and the remainder of his day he can drink only plain or sparkling water. 

That is just the beginning …

He hypothesizes that Matt’s gut is expending so much effort digesting his food, that it is under great stress.  If Matt is eating foods that his body can’t handle, they likely poke micro-holes in his intestine, which causes the foods that Matt eats to actually leak into his bloodstream.  The immune system mounts a response against these foreign cells in the blood.  If any of those cells mirror hair follicles, the auto-immune response initiates and the body attacks them. 

… or … his body is working so hard to digest food, that his body temperature is higher than it should be (YES, Matt is ALWAYS hot).  When your body is working in over drive, it needs to sacrifice some of it’s other processes.  Hair exists to keep us warm.  If you are already hot, then you don’t need hair, so the body sacrifices it to use its energy for:

- digestion

- working out (aka Matt’s p90X commitment over the last 2 years)

- lack of sleep associated with shift work (aka Matt get’s up at 4 am often for work)

- normal daily stresses.

Both of these hypothesis are very feasible and definitely make more sense than, “well, your hair is a lost cause.”

But what is the solution?

The doctor recommended that at least for a time, Matt go very strictly on what is called the Paleo Diet. 

What’s that?  That’s what I asked too!

It’s basically only eating things that primitive man was designed to eat.  I think of it as “garden of eden” foods.  Fruits, veggies, meats, fish, nuts, seeds.

No grains.  No rice.  No dairy.  No legumes.  No corn.  At all.  Basically, nothing processed.

It is STRICT!!!!!  I was prepared to give something up from our diet … THIS IS CRAZY. 

Or is it?

I don’t know, honestly.  Matt was game to try it.  Let’s do 3 months, he proposed, and then see if anything improves.

It’s his bald head, his tummy aches … so I’m going to support whatever he is game to try. 

We figured, the boys and I would go gluten free and fix meals that Matt could eat.   The kids and I can still eat gluten-free grains and while we will still eat some dairy, we will decrease it significantly.  I just strongly felt like if we didn’t rally behind Matt and make huge changes in our own patterns, there was no way he could succeed on his own.  We are a family, and we will do this together. 

I walked out of the office crying.  This seemed like such a huge sacrifice.  Other than for nutrition, we use food for celebration, for comfort, for tradition, for routine, for convenience.  I felt like this doctor was asking us to disregard our entire daiy routine/culture/heritage just on a whim that this could help Matt.  Again, what a huge sacrifice. When we celebrate anything, we do it around the food’s we love and that make us feel really good for the moment.  We can’t give those things up?  Can we?

But if it heals Matt’s body (not just the hair, but all of the GI symptoms) and improves his quality of life and longevity, then isn’t it worth it?

Yes.  But how?  And is this really right???

Bring in the Jesus.

Anytime I am at a crossroads, I get really homesick for Jesus.  I just want the comfort of His familiar voice to tell me where to go.  I prayed for God to show us what to do.  I specifically prayed for him to speak through Matt, since he was the one who brought us to this point.

When we prayed together, Matt got three images in his head:

1.  A caterpillar

2.  A Butterfly

3.  A Tricycle

We had no idea what these meant, so we just went to bed.

When I woke up the next morning, I was so sad.  I was faced with going the store to buy food in a way that I had never done before.  I felt super alone; like I was going into a store in a foreign country and didn’t speak the language.   I emailed a friend Bethany Fegles (my very very very favorite photographer and an amazing mom who lives a completely gluten/dairy free life).  I told her we were venturing into the g-free world, and she left me a voicemail shortly thereafter that was so encouraging and sweet.   She named all of my emotions and fears and totally understood!  I could have just cried hearing her encouraging words on the message.  She ended by saying that it would be just like riding a bike, and soon we would be so used to being g-free that we would not think twice about it.

Right when she said that, the image of the tricycle popped in my head, and I got it.  I could see that God was saying that while I was riding a trike right now (which is what it felt like), pretty soon it would become old hat.

Bethany also emailed me a few links that have been super helpful.  One of them was a blog entry she wrote for a friend's blog, and it filled out the rest of God’s picture for us.

At the end of it, she said …

“Our kids have a butterfly garden here at home, and we're in the process of watching caterpillars make their cocoons. This process reminds of a little picture that hung in our home when I was a child. It said, "What the caterpillar calls the end of the world, the Master calls a butterfly." Whatever season you're in, God is in it with you. Changes aren't always easy, but I'm confident that God's making something beautiful of your life!”

This stopped me in my tracks!  Once again, I just started crying, but this time, it was crying at being so thankful for God’s confirmation that his hands were fully in this process.  Yes Lord, we will move forward and see what you have in store.  Clearly, it’s something good.

I know enough about God to know that His answers to our prayers often don’t come in the way we originally think they will.  Perhaps Matt’s hair will never grow back, but God wants to use this to do something good in our lives, so we are game to see what it is.


It has taken me 2 full weeks to post this.  It has all been so overwhelming that I wasn't sure how to sum it all up.  But guess what!  In the past 2 weeks, God really has been SO faithful to meet me in all my fears!


-  I am extremely happy with the COLOR that I am feeding my family! Our meals rich in color, nutrients, and healthy goodness.  

Gluten Free hot dog buns for the boys ... Matt & I skipped any grains and had a strictly Paleo dinner :)  

- Matt and my energy levels are both through the roof.  Matt is OFF caffeine!  Yes, my starbucks husband is no longer a caffeine junky.  I've been drinking a cup or two of half decaf in the morning and that's it.  We both have way more steady energy throughout the day.


-  Our friends and family have been amazingly supportive.  People have welcomed our changes rather than judge us.  Our family and friends have done research, spend lots of $$$ and time preparing us paleo-friendly and g-free meals, and overall just made us feel normal rather than like freaky-deaks.


- For snacks, instead of crackers or bread products, we've been having fruits, veggies, rice cakes, and more, and they gobble them up. 


- I was so worried that our kids would feel punished or deprived.  Guess what, they have not noticed a thing.  They actually have been really enjoying all of our new foods.  I am trying to stay away from as much processed as possible, but I bought some g-free mac-n-cheese (rice pasta) for a special treat for the boys.  Tyler's comment was "This is the BEST mac-n-cheese I've ever had ... can we always buy this kind?"

I have been g-free for almost a month now.  Matt has been for 3 weeks, and Paleo for 2 weeks.  Tomorrow is his first check-in with Dr. Tony.  I hope it goes well!  This doctor comes highly, highly recommended, so we are excited for what he can possibly do for Matt.


Thanks for all of your support.  Thanks especially to Bethany for all of the advice and wisdom having been down this road.  Thanks to our family and closest friends for being "safe" houses where we can come and eat Paleo-safe.  You have no idea how much this has meant to us.


PS ... if you have not seen Fat, Sick, and Nearly Dead, it's a must watch documentary!  I believe it's free to watch for this month with that link.  Otherwise, google the title.