Sunday, November 11, 2012

Overwhelmed ...

Gluten Dude had an excellent post a bit ago entitled "Stop Eating Gluten Free Foods" - and it has cause a bit of a stir among us Celiacs - in the comments.  Has me thinking - which I suppose is the best reaction someone who does a blog post can hope for - discussion and thought.  It has also shown me (as I am subscribed to the comments) how poles apart we can be about this disease ~ has me feeling a touch overwhelmed.  I decided today to post my reply to some of the comments ... with my "two second" view on the differing passions and feelings about Celiac Disease.

"I think this Disease sucks … honestly to everyone that has written in on this subject … and to everyone that is reading the comments – I am at a point where yep … I wish I could survive and be content EATING NOTHING …

BUT I am a overweight, struggling Celiac who has to function in a busy life and I can’t do anything in extreme.

The more I read though the more I become depressed … I fight to be an advocate for a Disease that no one really seems to understand, a Disease that is so individual (it seems) as every person who has the Disease, that there is an overwhelming group of passionate people out there that really NEED to be heard, and yet only part of the message really gets through … and between the media and the mis informed advocates out there, it has all become a right cluster … bleep bleep … excuse the language. ;)
I feel for those newly diagnosed with this disease, I feel for those of us who have had it for a few years now and still not getting things right, I feel for those that have been diagnosed for many years that see how the world is twisting and poking at a Disease that NO ONE seems to really know all about it.

How do we figure it out ourselves? How do we help others to understand? … when we just don’t know … we just don’t know. Even Celiacs can not give other Celiacs advice … we can only give “experience” at how we have handled this or that, because honestly what works or does not work for us – doesn’t seem to be the answer for the Celiac sitting beside us.

So what are we to do? I think my advice to anyone with this disease is to go slowly … slowly try to absorb all the information and “experiences” out there and then if we CAN – try this or that to see if it works for us – as an individual.

AND if it does then as Gluten Dude has done here … let people know about “YOUR experience” and the benefits and the failings of what you may have tried and then leave it at that.

MY CELIAC IS NOT YOUR CELIAC … and from all that I have read and researched … though it honestly makes me sob somewhere deep inside … THAT is not going to change. Not now and not in the future.

Celiac Disease sucks … it is confusing, it is difficult, it is every changing – even as we heal the damage we may have caused our bodies, and we all heal at different paces.
We need to let each other know what has worked for them – LIKE Gluten Dude – and then we need to make our own decisions and see what works for us.

I feel for us all … at whatever stage we happen to be in … it is more difficult than anyone realizes and it makes us passionate and emotional to be heard.

WE all hear each other … and we understand.
Bless you all … and may we continue to work on our own health day by day and bring some “healing” to our lives.
Take care

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