I've muddled over how to begin. If you are a sufferer of Celiac or Crohn's, or lucky enough to have both like myself, you're already aware of the years gone undiagnosed and then toll it's taken on not only your physical, but your emotional well being, too.
The tremendous guilt that your parents have that they didn't "take better care of you" when you were younger. Didn't push the doctors to find out what was truly wrong with you. Then, once adulthood hit, it was on our shoulders. We ponder the "why wasn't I more insistent with my healthcare professionals throughout the years that there was somethin' wrong & they needed to find it?" Simple logic, actually. The symptoms come and go. Some actually fell in sync with flu bugs, stomach viruses goin' about the community.
I can guarantee you that almost every time I experienced an episode, at least 10 people that I knew had some kinda bug....
No disease is fun. I"ve great empathy and compassion for all who suffer. It just doesn't seem fair, or right, or just. But, these things apparently can't be helped for the most part. I will tell you from my own personal experience and the past 4 years (will be 5 in May 2013) of trying to get well, stay well, this one thing: neither one are for sissy's.
My first thought upon diagnosis was "well, that's simple enough. No gluten, low fat. How hard could that possibly be?" Well, it's been a journey filled with many hiccups, large ruts have loomed. A family has had to endure alot of "retraining" and there's a selfishness involving the fridge. I have my "own" butter. Yes, it has my name on it - all others are forbidden from using it. I have been unintentionally cross-contaminated by a spoon used to stir "real mac & cheese, gluten laden pasta" snitchin' butter. To some a minute amount, to my system, catastrophy. Apparently I'm one of those who've been blessed with a super-hyper sensitivity to the teeniest amount of gluten. Puts the doc's in shock & awe mode...
When your family insists on partaking in ingesting products with gluten, cross-contamination is a loomin' fear that nags on you, keeps you up at nights. We have "squeeze" everything (ketchup, mayo, etc) - but the thought always sticks with me "what if they accidently touched the bread/or gluten loaded object with the tip? did they wipe the excess with their finger that's touched the evil thing?" I've grown to be extremely paranoid. My poor grand youngun's have learned well, bless there hearts. It's sad and yet reassuring that the youngest in particular (perhaps because of his lactose intolerance since birth, a family thing we've apparently passed down several generations - starting, to my knowledge, with my maternal grandmother), is most cautious. He will come & tell me upon his arrival, "I can't kiss you, I've had gluten" and then give me a big hug. That boy is truly priceless.
And thus, the "Journey through the fog" continues....
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