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

WNY Gluten Free Diet Support Group Meeting
Saturday, October 5, 2013
Mt. Mercy Academy

The meeting was opened by the group’s President, Cliff Hauck.

Two new attendees were introduced.

A small group counseling session will take place after the speaker, Dr. Daniel Gelfond.

The following announcements were made:


·         The next meeting will take place on 11/23/13.  The speaker will be Ann Marie Smokowski, RD, CDE, who will speak on autism and the gluten free diet.

·         There will be no general membership meeting in December.  Instead, there will be a gluten free holiday luncheon at Salvatore’s Italian Gardens.  A reservation form can be found in the newsletter.

·         There will be no general membership meeting in January.

·         In February, Elaine Rothfus, RD, will speak on the International Symposium on Celiac Disease that she attended in Chicago in October.

Cliff introduced the guest speaker, Dr. Daniel Gelfond, who is a faculty member at the Children’s Hospital of Buffalo Division of Digestive Diseases and Nutrition and has an academic appointment at the University of Buffalo School of Medicine and Biomedical Sciences.  Prior to joining Children’s Hospital in 2008, he completed his pediatric gastroenterology fellowship training at the University of Maryland under the mentorship of Dr. Alessio Fasano.  Dr. Gelfond sees patients, does procedures, teaches residents, students and fellows and does research.  His main research interests include Celiac Disease, Cystic Fibrosis, Inflammatory Bowel Disease, gastrointestinal permeability, motility and related disorders.

Dr. Gelfond retouched on some of the components of Celiac Disease with pediatrics and what we are currently dealing with.

Dr. Gelfond discussed the history of Celiac Disease.  He stated that the definition of the disease has changed over the years based on new findings.  The current definition is that it is an “immune-mediated enteropathy triggered by inappropriate and permanent sensitivity to ingested gluten and gluten-like proteins found in wheat, rye, and barley.”  It is an autoimmune disease.

Right now, it is estimated to affect 1% of the general population in countries where the population is predominantly of European decent.

Although it is thought that 1% of the US population has Celiac Disease, 90% are undiagnosed.  There is an increased prevalence in at risk groups:  family members with Celiac Disease, autoimmune disorders (Type 1 Diabetes, autoimmune thyroid disease), Down Syndrome, Turners Syndrome and IgA deficiency.

Some symptoms and presentation of Celiac Disease include:  diarrhea, weight loss, poor linear growth, delayed puberty, amenorrhea, anemia, nausea, bone fractures, vomiting, abdominal pain, bloating and stomach distention, constipation, fatigue, dermatitis herpetiformis and osteoporosis/osteopenia.  Common signs and symptoms in toddlers include:  crossing growth percentiles, losing weight despite good nutritional intake, irritability, edema, laboratory studies due to poor nutritional absorption (iron deficient anemia, low protein and albumin, and low vitamin levels).  In older children and teenagers, we see:  short stature, poor weight gain, delayed puberty or menarche, iron-deficient anemia, zinc, and vitamin deficiencies, osteopenia/osteoporosis, arthritis, dermatitis herpetiformis, dental enamel hypoplasia of permanent teeth, and neuropsychiatric issues.

Acceptable screening includes:  tissue transglutaminase antibody (TTG, IgA and IgG), anti-endomysium IgA (EMA) (controversial because it is a subjective test).  He noted that there can be false positive and false negatives in serological testing.  An endoscopy with a biopsy is required to confirm serological suspicion of Celiac Disease except in biopsy proven dermatitis herpetiformis. 

Other wheat/gluten-related conditions include:  non-Celiac allergic response to wheat, gluten sensitivity (difficult to distinguish from wheat allergies - all of the work up is negative while symptoms are present with gluten ingestion, IBS-like symptoms, "foggy mind", neurologic, musculoskeletal (over 30% of IBS patients have wheat sensitivity). 

Treatment for Celiac patients is strict adherence to a gluten free diet.  The benefits of strict dietary compliance are:  eliminate immunological damage, improve nutrition and vitamin absorption, growth and bone mineralization, physical and psychosocial well-being.  Consequence of non-compliance include:  increased chance of developing other immune mediated conditions (autoimmune diseases), increased lifelong incidence of malignancy (if diagnosed and treated in childhood, lifelong risk of gastrointestinal lymphoma is not higher than the general population),and the mortality rate is double in non-compliant Celiac patients and six times higher in Celiac  patients not on a gluten free diet.

Respectfully submitted,

Julianne Fusani
Secretary

 

WNY Gluten Free Diet Support Group Meeting
Saturday, November 23, 2013
Mt. Mercy Academy

The meeting was opened by the group’s President, Cliff Hauck.  Cliff announced that the board met and voted to have fewer support group meetings in the coming year.  In addition, there will be no Celiac Walk in 2014.  He also stated that he will be stepping down as President and the group’s Treasurer, Pat Burt, will be stepping down as well.  He urged everyone to consider volunteering or running for office so that the group can continue to survive.

Forty-one guests were in attendance.  Five new attendees were introduced.

A small group counseling session will take place after the speaker, Ann Marie Smokowski, RD, CDE, CDN

The following announcements were made:
There will be no general membership meeting in December.  Instead, there will be a gluten free holiday luncheon and cookie exchange at Salvatore’s Italian Gardens on December 8th.  Reservation forms were included in the last edition of the newsletter and were available at the meeting for anyone who was still interested in attending.
On December 20th, Orchard Fresh in Orchard Park is having a special Gluten Free Day when 1% of the sales will come back to the WNY Gluten Free Diet Support Group.

There will be no general membership meeting in January.
The next general membership meeting will take place on Saturday, February 15th.  Elaine Rothfus, RD, will speak on the International Symposium on Celiac Disease that she attended in Chicago in October.  We are in need of donations of gluten-free baked goods for that meeting.
On February 16th, we will have a Valentine’s Day dining event.  More details will be forthcoming.
Raffle tickets for several raffle prizes were available for purchase.
“Rody’s Gluten Free Bread” offered bread and cookies for sale.  They can be reached at phattsmom@gmail.com or by calling (716)467-2181.  They plan to have cheesecake and zucchini muffins for sale at the next meeting in February.
Elaine Rothfus introduced our guest speaker, Ann Marie Smokowski, RD, CDE, CDN.  Ann Marie has been employed by Mercy Hospital of Buffalo since 1984.  She is a registered dietitian, certified diabetes educator and certified dietitian/nutritionist.  She teaches nutritional education classes and is the Outpatient Medical Nutrition Therapy Counselor.  Ann Marie sees OB patients at the Mercy OBGYN Center and the Mercy Comprehensive Care Center.  She also offers services to all patients specializing in weight management, diabetes, celiac disease and gluten sensitivity.  For more information, you can call (716)828-3520.
Ann Marie shared a very personal presentation with the group describing her journey with her autistic son, Matty, and their experience with the Specific Carbohydrate Diet as outlined by Elaine Gottschall, M.Sc. in her book entitled Breaking the Vicious Cycle.

Respectfully submitted,

Julianne Fusani
Secretary

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