The world thinks it knows about Celiac Disease from what they have seen on TV or read in magazines. They don’t. It isn’t some little tummy upset that goes away in a few hours. It is an Autoimmune Disease. It leads to other Autoimmune Diseases.
When I hear a Late Night talk show host cracking jokes about it I feel the need to throw something at the screen. When Rachel Ray said “Eat some pasta already!” I wanted to ask her if she would tell a kid with a nut allergy to “Eat some nuts already!”. Yes the nut allergy can be seen right away where the gluten allergy most times can’t. The nut allergy is life threatening immediately where the gluten allergy is life threatening over time. Here is the biggest difference. The nut allergy is easily detectable where the gluten allergy goes undetected for years. This causes long term damage that sometimes can’t be reversed.
I’ll never get the 1 foot of height I’ve lost in the last year back. I’ll never regain the cartilage in between the discs in my back either. I have Osteoarthritis and Osteoporosis at 42. It started when I was much younger. I have arthritis in my Pelvis and Hips. I have been told that a Hip Replacement is in my near future for my right hip. It clicks when I walk.
Malnutrition is my middle name. Vitamin D is non existent to me. At this point I would probably have to go for infusions. But getting my kidneys healthy comes first.
I used to have extremely thick, curly hair. I don’t anymore. Another symptom. I have a lovely bald spot on the right front side. When I wash my hair it comes out in clumps. I can no longer grow my fingernails either. My breath is not exactly pleasant. My sister and I call it “Celiac Breath”. It’s like you just ate a bowl of crap.
I also have Leukopenia where I always have a low white blood cell count leaving me open to infections because my system is compromised. Monoclonal Gammopathy is another disorder I have. I’m not sure what it is but it’s connected to a protein in the blood. I also have Dermatitis Herpetiformis which is an autoimmune disease that presents in a rash. This is under control but restricts my diet even further. The Chronic Fatigue and pain in my joints and muscles is probably the worse. I can’t take anything for it. When I wake up I can’t even make a fist and lifting my head off the pillow is torture.
No matter what I do or how hard I try my Celiac stays active. My sister’s does too. Add Bipolar Disorder, Conversion Disorder, and Acute Kidney Failure to all that and you never know what’s what. Doctors get sick of you fast. I get sick of Doctors. I’m tired of taking so many pills. Pills that probably have gluten in them. I’m tired of eating Rice Chex for every meal. Most of all I’m just tired. It takes up to 6 months to heal from being glutened. I never heal. Or I’m just always sick. Who knows? I look at what I’m diagnosed with and laugh. Rickets??!! Some this stuff they have written down sounds like I should be in a bubble. But no one is taking it seriously. The swelling on my brain? Still waiting for someone to do something about that. It’s only been 7 years. I kind of give up. Whatever happens, happens.