Monday, May 11

Elisabeth's G-Free Book

My comments to my celiac group,

You are a Hollywood agent; imagine that you are trying to get an unknown into the game. Remember the first rule. Any publicity--is good publicity. A good agent knows that you can correct the misconceptions later--get the notoriety now!

Elisabeth's book will serve to bring the issue to the forefront and garner attention that is so desperately needed for our underfunded disease.

Celiac disease is the unknown seeking it's big break. It is not predictable, it follows no specific rules, strikes no specific body type, race, culture, age. It can be diagnosed with a blood test or can be totally seronegative. It has a direct response through the gut, except for those cases when it has an indirect response striking neurologically.

It has specific gut symptoms, except for those 280 other non-specific symptoms, it can lie latent, or might have a trigger. It's called NCGS, or can be gluten intolerance only or an allergy ... there are as many debates and the disagreements are as diverse as people who suffer from diarrhea or constipation.

I have always eschewed the elitist environment out there that tells us that we must wait for a professional to guide us. Waiting to eliminate gluten until we have been adequately diagnosed by underfunded, ignorant medical professionals would have precluded five of my close relatives from the drastic benefits of living the gf lifestyle. One GI doctor actually told my sister after a positive diagnosis for CD that she should wait until she has stronger symptoms before attempting the diet.

In my five years of advocacy, none of the myriad of individuals who have contacted me have been diagnosed by the typical method used by the medical professionals as their "gold standard." First a blood test, then a biopsy, then six months without gluten, a biopsy, then six weeks back on gluten and another biopsy. Ain't happin'. We are all aware of the ignorance that pervades this disease.

But, when the unknown attains stardom, anything is possible.

It's my opinion that a GF book that anyone has the audacity, strength and literary pull to get published is publicity for our cause!!! It's our responsibility as experts in our own right to then discuss and speak out on what we see as errors--but don't berate the person who has the power to bring it to the forefront.

Instead, speak. In this digital world, your voice is heard and your opinion expands my understanding.

1 comment:

GFE--gluten free easily said...

Just found your blog ... I so, so agree with you on this post!!

Shirley