Tuesday, July 13, 2010

Celiac Disease

Celiac Disease details and symptoms

I left off my personal story of being diagnosed with Celiac disease (Why the gluten free diet?)  telling you I'd get into the details of the disease.  Here's the scoop.
Celieac Disease is... 

  • genetic (although no one in my family wanted to get tested, so I'm it)
  • chronic (for life!)
  • an autoimmune disease (like Type 1 Diabetes, some Thyroid Disease, Multiple Sclerosis, Rheumatoid Arthritis, Crohn's disease, and many others, our bodies fight themselves)  If you have one autoimmune disease, you have a good chance of having or developing another.  
  • a disease with one treatment:  a gluten free diet
Here's my version of what happens when I eat gluten:  If I were to swallow a piece of gluten filled pizza, it would go into my stomach where it would begin the digestion process.  It would then flow into my small intestine where the small fingers that are attached to the small intestine walls would try to absorb nutrients from my food.  These are called villi.  My body's immune system would say, "Attack!  Attack!  Attention immune system, the small intestine is being attacked by something toxic!  Fight it!"  My own body would then proceed to fight my own villi, causing them to get all messed up, retract, and make my small intestine more like a slip-and-slide than a nutrient absorber.  The next time I eat, my villi aren't there in full form to deal with the food, so it just goes right on through me.  I imagine every bite I take letting out a little "Woohoo!" as they slide freely through my digestive tract.  And it's not like these villi come back out after the gluten is gone, it takes FOREVER for them to get back to normal, it seems.  When I was first diagnosed they told me I may have to eat gluten free for a year before my villi recover.  I don't know how long it takes now that I'm somewhat healthy.  I don't ever knowingly cheat on my diet.  Never.  It's really ingrained in my mind that it isn't an option.  Cheating means horrible pain in the short term and in the long term it means I put myself at risk for a whole slew of problems, including small intestine cancer.  No thank you!  When I get stomach aches now, they'll last three days to several months before I feel normal again.  I assume that these episodes are somehow related to unknown gluten contamination.  You learn early on that this isn't something you do half way.  Gluten free has to be 100% or it doesn't work. 
When your body doesn't absorb enough nutrients from your food, you can imagine there's a whole slew of consequences to the intricate balance that should exist inside your body.  For me this showed itself in common ways, diarrhea, severe abdominal pain, anemia, distension, fatigue, excessive weight loss, headaches, irritability, depression (as if dealing with hourly bathroom runs wasn't depressing enough, a lack of absorption of B12 will really make you gloomy), tingling fingers, and dizziness.  Years later I battled a case of hypothyroid and other hormonal imbalances that took about a year to regulate, but may come back to haunt me later in life.  These are all known to be related to Celiac. 

Getting Tested
So, if you THINK you have Celiac disease, that does NOT mean you should try a gluten free diet.  It DOES mean that you should have a blood test done.  Have your doc do a Celiac panel.  This will test for antibodies in your blood that indicates that your body is currently treating gluten as a toxic substance.  Folks, admit it, you wouldn't stick to this diet unless you knew for sure that it was 100% necessary.  You must get the test!  Don't self-diagnose!  You have to be actively eating gluten in order for these tests to give you proper results.  If your blood test comes back positive, then you have to get the endoscopy and small intestine biopsy to confirm the diagnosis.

Two last bad doctor stories
After several years of a gluten free diet, I went to a gastroenterologist and told him, listen, this diet is not fixing the problem!  I still feel like crap ALL the time!  He said, "Well they should have told you to go lactose free as well!"  Turns out, if my digestive tract was in recovery mode, it was in no position to be digesting lactose.  An easy switch to lactaid milk for my cereal and vanilla soymilk for my lattes made a huge difference!  Lactaid pills don't work for me, but I ingest lactose in small doses anyway and just deal with minor upper-digestive tract pains.  (Hey, I'm not giving up pizza AND ice cream, plus, WI girls need their cheese!)  Yes, distinguishing between lactose stomach aches and gluten stomach aches is just one of my many talents.

Finally, maybe two years ago I went to get an endoscopy to check out how things were going and to see if yet another new doctor (change of health insurance) could figure out why I STILL didn't feel good.  I got the results via voicemail where some nurse told me, "We tested you for this disease called Celiac, which is a blah blah blah, and you DO NOT have Celiac disease."  Of course, if I were an idiot, I would have rejoiced and gone out and ate an entire Pizza Hut stuffed crust pizza for dinner.  However, because I'm educated about my health, I knew that the nurse didn't see on my chart that I DO have celiac disease, had been on a gluten free diet for 5 years, and THAT is why the test came back negative.  I called them back and confirmed this with the doctor, who didn't seemed the slightest bit concerned that his his nurse was spreading false hope by not looking at people's charts before delivering lab results to patients.  The good news was that my villi had recovered enough to test negative.  So, my current stomach aches must just be unavoidable, unless I want to search for other intolerances (soy?  corn?  more strict on the lactose?).  We'll see.