You Have What?

I've been getting this a lot lately.  From friends, associates, co-workers, family, you name it.  Go figure, right?   

Here's how the conversation typically goes:

THEM:  "So I heard you are allergic to gluten".
ME:       "No, I'm not 'allergic'.  I have Celiac Disease and I cannot consume gluten".
THEM:  "Oh, so it's like a food allergy.  Do you break out in hives or something?"
ME:       "No.  I don't get hives, and it's not a food allergy, its an actual disease."
THEM:  "How old are you? You just got this?"
ME:       "No, I'm just making the entire thing up...YES, I just got this!"
THEM:  "Well you ate it before, a little bit can't hurt right?"
ME:       "Would a smack in the head, nausea, vomiting, migraines and vertigo hurt you?"

Yes, I really just did get the diagnosis.  It's been 1.5 months and I learn more and more everyday.  And the most profound thing I've learned is that MOST people have no idea what it is, including medical professionals.

Here's an alarming statistic I recently read: 

The number of Americans with Celiac Disease would fill 936 cruise ships. Passengers on 908 of the ships don't even know they have it.

If that doesn't make you want to sit up and take notice, I don't know what will.

In a nutshell Celiac disease damages the small intestine and interferes with absorption of nutrients from food. People who have Celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in everyday products such as medicines, vitamins, lip balms, make-up and toiletries.

I hope you are now asking yourself, "What are the signs and symptoms and could I have it?"

I wish it were that easy.  There are over 200 associated symptoms to Celiac disease.  It varys with age and it's very deceptive.  In adults, it often goes undiagnosed for 5 or more years, and there is no 'magic' age for being diagnosed. 

Here were my symptoms:  Fatigue, headaches every day, upset stomach as soon as I woke up, constant vertigo, tingling hands and feet, shedding hair, nausea, vomiting, loss of focus, distended stomach.

Here were the tests my primary physician ordered over the course of almost 2 years:  Abdominal ultrasound x2, pelvic ultrasound, abdominal CT with contrast, chest CT with contrast, EKG, echo, numerous xrays, a stool sample, and CBC blood panel.  ALL SHOWED NOTHING.  Well, they showed my organs, but you know what I mean.

In a perfect world everyone would be given a Celiac blood panel.  Doctors don't wait until you have a heart attack and are dead and then decide to run cardiac blood and diagnostic tests on you. So why wait to test for Celiac?

We live in a world where most Doctors treat symptoms.  I was prescribed Vicodin, Percocet, Naprosyn and Motrin for pain and inflammation, GasX and Prilosec for stomach issues, Meclizine for vertigo and Imitrex for migraines.  All of this to treat the symptoms I list above.  I didn't take half of it.  Who the heck can lead the busy lifestyle I do while walking around on Vicodin and Percocet all day?! Not me!

We also live in a world where pharmaceutical companies control research and funding. You ever wonder why you are always being pushed 'the new drug' when you go to the doctor?  "Let me give you a sample...".  Or you are always prescribed something for one of your symptoms instead of them actually looking for the source of your pain?   Because Pharma reps bring nice big lunches and frappuccinos to your medical office and get your Doctor to push you that next new drug they are promoting. 

Well guess what folks- there is NO DRUG that fixes Celiac disease.  It can only be treated by diet.  So why should they spend money researching Celiac disease when they can't make a pill for it?  And why should your Doctor test you for it if he can't prescribe a pill and get the kick-back?  Did the light bulb just go on?  I hope so.

So if you are frustrated that you feel like crap and don't know what's wrong with you, ask your Doctor to run a Celiac blood panel on you.  And if they tell you "I don't really know much about Celiac Disease", which is what my Mother was just told at her doctors office, request to see a Gastro specialist.  Hey...at least the guy was honest!