Celiac and Me

I am a Celiac.  This means that I can't digest gluten.  The gluten destroys my body from the inside out.  The pain from having gluten is insidious, effecting ever aspect of your life. The symptoms are myriad, which make diagnosis difficult.  Celiac Disease is an immune disease that causes inflammation and damages the small intestine's lining, causing other complications.

Like many people, I was diagnosed later in life.  I don't know how long I've had Celiac Disease, but I suspect it's been a good chunk of my life.  I was diagnosed in my late 40's.  My life before and after this diagnosis has been night and day.  I have energy and endurance now that I just didn't have before.

Diagnosis was difficult.  Through most of my late 30's and early 40's, I struggled to find what was going on.  I had constant stomach pain that woke me up in the middle of the night.  It felt like that scene from Alien - where something was trying to rip it's way through my stomach.  My joints ached constantly.  I was always tired.  No matter how much I worked out, I couldn't lose weight.

I went to Weight Watchers.  I followed their diet to the letter.  I couldn't lose weight.  I was working out an hour a day, 5 days a week - and still no weight loss.  My leader told me to log everything - exercise, food, blood pressure, and GI symptoms -  for two weeks.  I did.  She read it, and then told me I needed to go to a doctor because something else was going on.

And thus began the journey from hell.

My Family Practitioner - whom I had been seeing for years - and who had told me to go to WW in the first place - called me a liar to my face.  "If you'd really been doing this, you would have lost weight.  Stop lying about what's going on and blaming other things for your failures."   TRUE STORY.

Same practice, different doctor - took a bored glance at my log (which filled most of a composition notebook at this time, and included food I'd eaten, workouts, and symptoms.)  She told me "I don't deal with fat people.  Find a different doctor."  TRUE STORY

That's some quality medicine for you.  Hey, this practice is located in Maryland.  I know I'm not the only one who's had issues with them.  If you hear this from your doctors in Central Maryland, find another doctor!

Next practice - when I had been dealing with yet another case of bronchitis and pneumonia - third time in two years.  I got the lecture about losing weight, but this doctor actually mentioned the word "allergies".  He then prescribed me mega doses of allergy medicine.  Claritin and Flonase were my staples, and in the spring, I got to supplement with Benadryl.   This wonderful combination left me a zombie most of the time, but I felt a little better.

Third Practice - My Current Practice -
Walked in for my well person check up with my food log.
My nurse practitioner took a look through my log, looked at me and said "This looks like a food allergy.  I don't specialize in allergies.  Let's send you to people who do and get you some answers."

I was stunned.  FINALLY - the help I needed.

The answers have been coming over the past few years.

First was the Celiac Diagnosis.

Next, we found the Dairy Allergy.

And then, Soy.

I now know what "normal" feels like.  I have stamina.  I have energy.  No more stomach issues.  I sleep through the night.  No more boils.  No more canker sores.  No joint pain.  (Well, except the arthritis in my left knee that bugs me on occasion.)

And all of those prescription grade allergy medicines?  Gone.   During my high allergy time - tree pollen season - I take over the counter Zyrtec for 3 weeks of the year.  That's it.

Oh, and the weight?  I haven't changed my workout habits at all.  If anything, I'm working out less now than I was years ago.  I'm down 40 pounds.  40.  No Weight Watchers, no extreme liquid diets - just eating food I can tolerate and getting to the gym 3 or 4 days a week.

I'm not sharing this for the hell of it. I share this for anyone who might have a health issue going on and has the frustration of doctors not listening to you.  You know what's right in your body and what's not.  You know your normal.  If your normal changes, get yourself to the doctor.  If your doctor doesn't listen to you, find another doctor.  Change practices.

Being a Celiac makes life challenging.  Long distance flights are a nightmare. Food on an airplane?  Yeah, that's not going to happen.  Airlines don't really care about your food allergies. Eating out is a challenge.  Travel is a challenge.  There's no "grab and go".  You have to plan excursions before you leave, making certain you have food with you.

But, when you know what is going on, and you understand how to take care of yourself, you can make the world work for you.