<<Disclaimer: Verify this information before applying it to your situation.>>

Hi Everyone,

I have been thinking about this for quite some time and Hillary's email nudged me to finally try to put my thoughts down and send them.  I hope that they will be accepted as constructive comments and will help to improve our listserve for all of us.

When my husband was first diagnosed with celiac disease, we were at a complete loss as to what to do.  We lived in an area that provided little help from the medical community.  There was one doctor in the area who seemed to be celiac aware and was diagnosing patients, but that was where the help stopped.  Unfortunately, there were no dietitians in the area that were well versed in the gluten free diet and no local health food stores or support groups.  We felt so overwhelmed and alone.

Since I was the one who did most of the grocery shopping and meal planning and preparation, I had this huge fear that I would prepare something for him to eat that would make him sick or make his condition worse.   I was actually afraid to prepare just about anything for him and eating at a restaurant was definitely out of the question.

In desperation, I turned to the internet for assistance and found this listserve.  I can't tell you how much that you all meant to me personally and to our family during that time.  You were our lifeline and I knew that if I had questions, I had only to ask and some kind person would answer and at least point me in the right direction.

I am sure that I made a pest of myself during those first few months as I had nowhere else to turn.  I know that I asked questions that had been covered before -- probably many times, but we found parts of the GF diet quite confusing -- especially questionable ingredients.  I am so grateful for those of you who were patient and kind and helpful.

It has now been nearly six years and we have started two support groups and are trying to help others the way you all helped us.  

Over the years, I have also posted information and/or asked questions and  received replies that were not too nice.  Some were so nasty that, like Hillary,  they made me not want to post anything anymore.   

My point in all of this is that sometimes we need to be reminded of how it was for us in the beginning of this long GF journey!
It was terribly confusing and overwhelming for me and I was not the person who was sick.  

I hope that those of you who have received "not so nice" emails" will continue to participate and share information with the rest of us and I hope that those of you who send the "not so nice" emails will simply refrain from doing so. 

Thanks for allowing me to share my thoughts and for being there!

Barbara in Missouri
 

*Support summarization of posts, reply to the SENDER not the CELIAC List*