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All Celiacs had the opportunity to attend the conference if they could get away.  Since we are retired, we attended the Conference and were very glad we did.  For those who think that the Celiac World was always like this, it wasn't.
Today, we now have official recognition  of the importance of this dreadful, autoimmune disease and it's importance,  in all its forms, to the state of American Health. To draw a picture of the enormity of this accomplishment, let me give you the world prior to this event.

In 1968, when I was on the ropes at 95 lbs, dehydrated and hopeless, I was one of the lucky ones who got diagnosed in midlife.  I was given a single sheet of paper with a list of the few items available in carbohydrates, all in wheat starch and a cook book that was Lowgluten.  There were no gums to hold baked goods together and if you wanted to use soy flour, you hid the taste only in chocolate cupcakes.  Support groups by 1978, in this area, consisted of an informal group of about 10 people that became aware of each other when a woman suceeded in getting  Senator Kennedy to pass a bill so that we could deduct the excess cost of special food from our taxes.

Our big break came only in 1995, when Dr.Alessio Fasano and Dr. Joseph Murray invited all Celiac's known to them to Chicago to hear what they had to tell us.  They urged us to hurry and organize a national group  to lobby as one to gain governmental recognition.  Canada already had a single group and recognition by their government.

An attempt was made to put one together and it was recognized by attendees  that we also needed advertising.  
Unfortunately,ego's and personalities got in the way but this list serve was established and Celiacs everywhere could talk to one another.

The doctors also urged all groups and indiviuals to cooperate and to help support the financial burden of a five year national blood study to determine the incidence of CD.  Many groups and individuals did support this study
which proved that the incidence of CD was at least as great as Europe's if not higher.

The national support groups grew into many more support groups but cooperated less than they should have.  You should know thatt the consensus of the National Institutes of Health was that the 15 0r 16 support groups that we have today will not get us far very fast until they only have a single federation to work with.  This is the very same theme that the head of the Canadian Celiac Society emphasized to us in Chicago in 1995 and we ignored it.  In a public comment, to the panel, Dr. Joseph Murray stated that he considered the lack of cooperation on the part of support groups was a "travesty"  We certainly agree with him emphatically.

We Celiacs owe "big time" a debt of gratitude to Drs. Murray and Fasano.  We need to make the government's and the doctors jobs easier to help us by not wasting time and forming a federation now!
Hal and Irma De Bruyn in Boston    

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