I am disheartened on the deepest levels to know that ignorance about this disease has to be battled in our own community! If there are Celiacs actively undermining the serious nature of this disease and calling efforts to absolutely protect oneself from the very substance that makes one ill "obsession," how on earth will we ever get the non-Celiac population, let alone the medical establishment, to understand? This person seemed to think an important step is learning to understand one's "limits of exposure." I am a Celiac! I can tolerate ZERO gluten. I know my limit . . . it is ZERO.
Here are a few important things to know about Celiac Disease:
-Symptoms & their severity vary widely. I might have neuropathy, you might have diarrhea. I might have anxiety so severe it requires medical attention, you might get mild indigestion.
-Regardless of symptoms or their severity, exposure to gluten in a Celiac causes damage to the small intestine. That damage leads to other health problems, malnourishment all the way to intestinal lymphoma.
-Celiac Disease is extremely under- and misdiagnosed. Three million people in the US have it & 90% of them don't know it yet.
-Delay in diagnosis is on average 8-11 years and leads to a VERY increased risk of developing addition autoimmune disorders. The longer undiagnosed, the more autoimmunes.
I went undiagnosed for over 10 years, many more Celiacs have gone far beyond a decade. The damage to multiple systems in my body has been serious and may never totally heal. I developed additional autoimmune disorders and many other food/product sensitivities. The way I am addressing it is not "obsession" and has not made my "existence awful and sad." I feel incredibly lucky to have found a method of managing my illness and am extremely empowered by the healing I have achieved to this point. That healing is a direct result of my steadfast, focused commitment on my personal health. My story is not unusual for a Celiac. Many others have been here too and many others take just as much care to protect themselves from gluten exposure.
As Celiacs, we should all be in this together, raising awareness, not helping perpetuate the idea that vigilance in protecting ourselves from the pervasive gluten in our environment is an "extreme obsession."