May is Celiac Disease Awareness Month - apparently

So I got an email today from SLCGIG (Salt Lake City branch of Gluten Intolerance Group), turns out it is Celiac Awareness month. So, I thought I should do my share to make you all aware of 'what ales me'. CD is an autoimmune illness. When my body recognizes that I have digested gluten, it starts to fight itself. I call it -poisoned. People always ask "What happens if you eat that pizza (croissant, noodles, fresh fluffy warm bread - fill in your favorite whatever)?" I know people are curious (maybe they have it to, maybe they are just those morbid people who want to know the nasty trauma everyone suffers), whatever the reason the answer isn't pretty. The answer that I usually give anymore is "It's like having the flu - for 2 weeks. I figure that gives people enough imagery without so much detail that they will puke on the floor right in front of me.

Not for the week of stomach/heart
For the record some symptoms are (in no particular order):
diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain, and muscle cramps. Physicians may not be aware that celiac disease frequently presents with other symptoms, some that do not involve the small intestine. More often, symptoms can include constipation, constipation alternating with diarrhea, or premature osteoporosis. Overweight persons may also have undiagnosed celiac disease. Children may exhibit behavioral, learning or concentration problems, irritability, diarrhea, bloated abdomen, growth failure, dental enamel defects, or projectile vomiting. Others will have symptoms such as rheumatoid conditions, chronic anemia, chronic fatigue, weakness, migraine headaches, nerve problems such as tingling of hands or difficulty walking, or other conditions that are unexplained and/or do not respond to usual treatment. People may have one or more of the above symptoms. Patients are frequently misdiagnosed as having 'irritable bowel syndrome', 'spastic colon/bowel', or Crohn's disease'. (ref: http://www.gluten.net/celiac.htm)

While these are the regular symptoms, not everyone will have these symptoms, that's right, there are others. I also had chest pains (which is what lead me to the Dr. in the first place). 1 in 133 people have CD. 95% of people with CD are undiagnosed or misdiagnosed.

The only "cure" for celiac is a life long commitment to a gluten free lifestyle (I hate the word 'diet'). Where is gluten? You ask...EVERYWHERE I say. Gluten is a protein found in wheat, barley and rye. For some reason, if you buy something that didn't have wheat in it, someone thought it would be really funny to squeeze the hell out of the little grains and was satisfied when they saw the little poop of gluten. Yes, even just a little spot of gluten can damage those with CD. Go ahead, look at any label on food (which I randomly do - just in case I can find a new treat). Seem simple enough? Don't kid yourself. They will rarely list "wheat gluten" on the label. Sometimes it is hidden or is included in other ingredients such as "caramel coloring, natural flavors, or seasonings". And, unless I have researched that product already, I just won't buy it. Oh yeah, then there was the kicker the doctor threw in. I can't have dairy. WHAT?!?! No cheese or ice cream?!?! Kill me now - go ahead, I dare you.

Related Disorders: Dermatitis herpetiformis (itchy skin rash, dry spot stuff) is also present in some people with celiac disease. Other autoimmune disorders that people with CD are at greater risk to develop include Addison' s disease, autoimmune chronic active hepatitis, Alopecia Areata, Graves' disease, insulin-dependent diabetes mellitus (type 1), myasthenia gravis, scleroderma, Sjogren's syndrome, lupus, and thyroid disease. Thyroid diseases and diabetes are the two most commonly associated diseases found with celiac disease. Thyroid disease is most commonly associated with DH. (ref: http://www.gluten.net/celiac.htm)
There are also links to Autism, infertility and cancers in the gut.

As most of you know, being diagnosed in November 06 really changed my life.

• Grocery shopping time has now quadrupled (I have to read every label, even after all this time because manufacturers change their recipes whenever they feel like it, without consulting me - imagine).
• Food is a bit more expensive, some I can only find at a specialty food store (which just so happens is around the corner from my house THANK God (maybe)).
• Everything has to be planned, no spur of the moment ANYTHING.
• Going out to eat is a joke. I hate going most anywhere. There are only a few places around that even recognize "gluten free" (although they are increasing).
• Even if I find a place (and how often can one go to Chili's anyway? Really!). I am that high maintenance person at the table with 7 requests of what to do with my food - followed by a "A please don't touch anything with anything, I'm totally allergic and could die!" Which we all know isn't true, like Chili's is worth dying for (we'll address their margarita's on a different day).

Look at the links on the side for more information. If there is anything I could tell people it is just go get tested. There is a blood test, you can have your Dr. work it in on your next physical. Or, if you are at the age where they are randomly putting tubes, cameras and firecrackers in your orifices, have them take a biopsy of your stomach lining. This is the sure fire way to be diagnosed (I hear the blood test gives an unusually high number of false negatives). Keep in mind, I wouldn't usually recommend someone do something to make their lives harder. But really, if I knew people were supposed to feel this good, I would have gone GF a long time ago. I really had NO IDEA!! So, look at links and ask me questions. It is CD Awareness month. I will even answer questions that I usually prefer not to and shy away from (it's not so brave, I know this one fabulous little chicky who is trying to lose wait and is posting her progress on her blog, a few words about the big D is nothing (go girl!!)).

So, fire away! Bring it! I can take it! Just be prepared to have the honest answer broadcast to everyone blogwide.