Color me a 53 year old Celiac...a survivor!!!
by Rebecca Grochau
(Cleveland, Mississippi, USA)
I am a survivor of undiagnosed Celiac Disease from probable birth (1958) until 2003 and chronic Lyme Disease/Tertiary latent type, also misdiagnosed from 1995 until 2007. I am a survivor after many years of emotional, and social, occupational, and financial devastation/deterioration prior to the correct diagnoses. Celiac Disease, doctors theorize, was/is the primary autoimmune disorder present since early childhood that caused so many subsequent accurate and inaccurate diagnoses/acquired Mutated Lyme.
Throughout childhood, I had gastrointestinal difficulties, ie stomach ulcers, nausea, vomiting, etc.
My father was a Radiologist. At this time in history, little was known about the prevelance of the disease. No one had a clue that I had a genetic disorder acquired from my father's maternal familial family tree.
My bone type has always been medium, although I am 5' and weighed 100 pounds.
My pregnancies were extremely difficult w/two emergency C-sections. I have had 14 operations, so many diagnoses to list. Some of the misdiagnoses were hypoglycemia, Wolfe-Parkinson-White, heart errythmia, tachycardia, bradycardia, unspecified cardiac disease, Addison's Disease, Hypothyroidism, malingering, etc. I have been so dehydrated on so many occasions that my blood vessels were 'blown' so severely that a port-a-cath was inserted after numerous failed ports were attempted, pic, central...IVs would sometimes have to be initiated in my feet. I became so weak in my thirties/forties that I had to quit my profession as a therapist and college Psychology instructor.
I have never electively cheated by eating gluten, but also suffer from DH/the skin expression, which created alot of difficulties in my numerous surgeries/hospitalizations from adhesive bandaides/EKG leads. I wear only Clinique makeup, have to read every label on everything on any manufactured food, toothpaste to make sure nothing contains any gluten. America generally uses gluten in so many things Celiacs don't consider early in their recovery. I cannot lick an envelope (gluten), allow my dogs to lick me after they eat dogfood, and have to live a life of a defensive gluten warrior. I have to be mindful every day, every hour, every minute of accidentally being exposed to gluten. Now food does not interest me. I have been so acclimated to my lifestyle, that when rarely dining out at a Gluten-free friendly restaurant, I don't even notice what other people eat. Even at these type of restaurants, however, I have learned that you can still be contaminated by waitresses/cooks that don't fully understand the disease. I plan to continue my mission to be a part of any movement to increase awareness about this disease and cannot empasize the importance of humor, a good attidude, and gratitude that we are the fortunate ones that finally received the correct diagnosis before the alternative. Bless you for your activism!!! Becky from Mississippi
Steve's response - Thank you Becky for visiting my website and sharing your personal story. I only hope you are feeling better now that you have been correctly diagnosed!