Western New York Gluten Free Diet Support Group
Local Chapter #33 of the Celiac Support Association
General Meeting Minutes


                                       GENERAL MEETING – September 12, 2015


The general meeting was opened by Chair Julie Fusani at Mount Mercy Academy at 10:10 AM. Julie introduced the Board members and the 3 newly diagnosed attendees. Julie reminded the group that dues are $20 for new members and $15 for returning members. She reminded us of the upcoming dinner at Bravo’s at the Galleria Mall on September 20th, the various courses offered at Tops, and the upcoming meeting on November 14 at the Unitarian Universalist Church.


Julie introduced the panel members for today’s program on Raising Celiac Kids. Panel members include Patty Prokes, Mary Alice Kelly, Wendy Slisz, Katie Giansante, and Erin Burch. Each panel member explained her experiences living with Celiac disease. Group questions were answered at the end of the panel presentation.


Highlights included:

Patty Prokes –

·       Patty’s one daughter has celiac and the other daughter carries the gene

·       Her daughter felt a great need to talk about it when she was first diagnosed.

·       It was difficult to keep to the diet in the beginning for a child

·       Now the daughter is in college and handles it well.

Dr. Mary Alice Kelly-

·       Her daughter had the symptoms of bloating and exhaustion. Biopsy/blood work showed iron deficiency and other vitamin deficiencies as well.

·       Important to find supportive friends

·       Found cruise lines to be extremely accommodating

·       Travels with GF foods to meetings, luncheons, dinners etc.

Wendy Slisz-

·       Parent of 3 children, 2 of whom have celiac

·       Found the importance of family support at group dinners

·       Mentioned that daughter had celiac to the cafeteria staff at school

·       Explained just the basics to young children ( Tired,stomach ache.) Tell more details as the child gets older

Katie Giansante-

·       Adopted child has celiac, reflux, IBS, and arthritis. Arthritis is umbrella to celiac.

·       Listen to your kids and seek medical diagnosis. Don’t just brush them off.

·       At first the diagnosis is daunting but soon you’ve got it under control

·       Get a good gastroenterologist

·       Go to Wegman’s. They will give you a tour of the store and point out GF foods.

·       Call ahead if you are going to a restaurant to find out what they offer and give them notice that you are coming.

·       Grocery shopping is more expensive

Erin Burch-

·       Dietician

·       Shop the rim of the store for fresh foods

·       Replace gluten foods they like with GF items to start off the diet. (Breads, cookies etc.)

·       Can feel overwhelmed with first diagnosed

·       Add greens into eggs and casseroles

·       Risk of vitamin B deficiency as GF breads don’t have to be enriched so watch for enriched GF cereal

·       Get a good multi- vitamin

·       Gut can take 6-12 months to heal

·       Get iron from red meats, chicken, leafy greens.

·       Increase natural foods. This is good for the entire family.

·       You might have issues with lactose since the top of the villi is what breaks down the lactose so if the villi are damaged, you might have a lactose problem as well. Almond milk has no lactose.

·       To be safe, send in your own GF snacks to a party.


There were 25 attendees who signed in for the meeting.

The meeting was adjourned at 11:20AM


Respectfully submitted,

Lindy Redmond




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