Posted by , 22 July 2005 · 25 views
So this is my intro post I guess. I actually do have a main blog, dedicated to my 2 1/2 year old daughter at O. Baby! and a main blog (currently on hiatus) at Life and Love in the Desert. But I figured a celiac.com blog might be interesting too.I was diagnosed with celiac disease the first time when I was about one year old, in 1976. I was originally diagnosed with failure to thrive and after changing dozens and dozens of disgusting cloth diapers every day for over a year, my mother took matters into her own hands. She headed East to DC and did her own research. She came back with a short list of things that could possibly be wrong; celiac disease was on the list. Thankfully the doctor had heard of it and was humble enough to say he truly didn't know and he sought the advice of specialists. Sure enough, I was diagnosed with celiac disease.My childhood was spent with a lovely silver MedicAlert bracelet and I could recite my poisons (Gluten, wheat, oats, barley and rye!) with a delightful cadence by the time I was three. I grew well and as long as I didn't cheat - and oh! was that hard sometimes - I was fine. When I did cheat, I would find myself glued to my friends' toilets in no time. The embarrassment of that was usually enough to keep me in line.By the time I was an pre-teen though, things were different. I could cheat and nothing would happen most of the time. The whole celiac disease thing was starting to crimp my style. The doctors had told us based on what they knew of celiac disease at the time that it was a childhood disease and many children grow out of it. When I was 13, my doctor gave my mother a choice. They could attach me to monitors and stick me with needles while giving me IV gluten and watch my reaction for a full day. Or they could just let me eat whatever I wanted for a while and see what happens. Well, duh.So, from 13 to 26 I ate whatever I wanted. Pizza was always my favorite (still is!). But I was partial to good breads too, especially good rich sourdoughs. And pasta! I worked for three years for Olive Garden and spent many a lunch break scarfing down hot buttery breadsticks with Alfredo, or chiken fettuccine alfredo. My mouth waters remembering.When I was married in 2000, I enjoyed our wedding feast and wedding cake. We even enjoyed the frozen top layer on our first anniversary in 2001 in New Orleans. But by then, I knew something wasn't quite right.By early 2002, I was starting to have what I called "incidents." Randomly I would have the most excruciating shooting pains in my abdomen. They not only took my breath away, but I would end up with tunnel vision and spend hours on the verge of passing out. They seemed random, and usually I would end up on the toilet at some point and generally I'd feel better later. During this time I was also trying to get pregnant and realized quickly that I wasn't menstruating properly either.I gave in and went to see a GI Dr. She said that things had changed a bit in the decade and a half since my last celiac disease doctor visit. Thankfully they can do a blood test now, and she sent me off for one of those thinking that it possibly was celiac disease causing my problems. We also did a minimally invasive intestine check that looked fine. The blood test interestingly came back inconclusive, but edging on positive. She said they could do the more invasive biopsy, or I could go gluten-free and see if it helps. Once again, the clinical method or the lifestyle method?I decided against the biopsy and she sent me on my merry way, ready to reenter the gluten-free life. So, here I am three and a half years later. I have a daughter, so that all worked out fine. The "incidents" have stopped. My daughter doesn't appear to have celiac disease which makes me very happy. We kept her gluten-free for the first year, then introduced gluten slowly. I should be happy.But I admit I still feel something's wrong. Maybe it's because I'm too busy and tired to cook 100% of what I eat, so I eat out and eat processed foods a lot. Maybe it's not just celiac disease. But my intestinal issues as a whole are not necessarily any better. No traumatic incidents, but more regular soft BM's or outright diarrhea, plenty of cramping, etc. If it's trace gluten and everything you read tells you trace gluten is about as bad as all-you-can-eat gluten, then why do I bother? I don't know the answers. I just keep reading what I can, try to be good and hope it works itself out in the end.What about you? If you keep your own celiac disease blog, post your link here. If you don't, tell me your story!