University of Virginia Health System

Charlottesvilli Celiac Support Group - Meeting Highlights

We were delighted to welcome Doctors Peter Ernst and Sheila Crowe as the speakers for the September meeting.  They brought a wealth of professional and personal knowledge about living and eating out with Celiac Disease. 

Dr. Ernst began his talk with some excellent background about the histology (tissue level) basis of celiac disease.  We learned that due to the inflammation in the intestine, celiac patients lose absorptive surface area along the bowel, which can lead to the anemia and osteoporosis many celiac disease patients develop.  The HLA molecule governs these immune responses.  These tiny molecules are genetically encoded proteins that present the stimulus to the T-cells  (a part of the immune system).  The stimulus in the case of celiac patients’ is, of course, gluten.  This increased immune response leads to inflammation and in turn loss of absorptive area in the bowel.  According to Dr. Ernst, “Sometimes the price you pay for increased immunity can be an autoimmune disease.” 

Dr. Ernst addressed the question “How much gluten is too much?”  A “typical” diet contains about 40 grams of gluten.  The term gluten free is defined scientifically as 200 parts per million or less than .02%.  To put this into perspective he gave the following examples:

The major goal for a celiac patient is to avoid exposure to gluten as much as possible to in turn avoid this inflammatory process.  Dr. Ernst cited a study of 100 celiac patients.  In this study, 90 to 95% of these patients maintained a gluten free diet.  However, when dining out, that number decreased to 70 to 85% gluten free.  Is this due to lack of compliance?  Often it is not.  Accidental exposure to gluten outside the home is very common for the person with celiac disease. 

Dr. Ernst suggested the following when dining away from home:

• “Slow food” is often safer than fast food. 

A sit down style restaurant is often safer because the cooks will be more familiar with the ingredients.  They are often more willing to make a food item a bit different from how it appears on the menu and often there is less chance of cross contamination.

• Knowing the basics of food preparation will result in informed food choices.

It is a good idea to be familiar with basic food preparation.  This will help you to identify products traditionally made with gluten-containing ingredients.  It is a good idea to review menus and recipes before visiting a certain type of restaurant.  For example, become familiar with typical Italian sauces before visiting an Italian restaurant for more successful eating.

• Think of good questions to ask before you dine out.

Examples include the following:

Remember which restaurants and food items worked and which did not.  Some of eating out is trial and error.

Celiac “Friendly” Dining Choices from Dr. Ernst and Dr. Crowe

For fast food, a grilled chicken salad without the croutons is often a good choice.

In closing, Dr. Crowe reminded us that some celiac patients also need to be familiar with lactose-containing foods and high fat foods.  In particular, newly diagnosed patients may need to avoid lactose in the beginning. High lactose foods include milk and ice cream; however, many cheeses and yogurt are typically low in lactose. 

News and Updates

The newest edition of Shelly Case’s book, Gluten-Free Diet A Comprehensive Resource Guide, is now available.  We will have it available at the next Support Group meeting in December.  The cost will be $12.00. *Addendum: This edition (2003) no longer available as of  July 2006*

Celiac Support Group T-shirts are available and look great.  If you would like to purchase one, contact Anna Ashworth at agashworth@aol.com or 804-364-3794.

A new ROCK Chapter has formed in Richmond!  The kick off party was Sunday, October 26^th.  ROCK (Raising Our Celiac Kids) is a support group for parents, families and friends of kids with celiac disease or gluten intolerance.  For more information about the next meeting, contact Laurie McCotter at lhm6q@virginia.edu.

• We wish this group tons of success, as it is very much needed for celiac kids.

On December 18^th U-Krops and the Richmond Dietetic Association will sponsor a celiac event.  It will include basic information on gluten free eating and there will be food tasting!  The event will be held from 4:00 to 6:00 PM, is free to the public, and will be held at one of the West End U-Krops stores in Richmond.

Directions to the U-Krops store from Charlottesville:

• Take 64 East to Broad Street/Short Pump Exit.
• Bear to the right.
• Take a left onto Pump Road.  (You will see a Walmart on the right hand side of the this intersection.)
• At the third light, turn right onto Ridgefield Parkway.
• The store is at the intersection of Ridgefield Parkway and John Rolfe Parkway.

The “Gluten Detoxification Trial” is a new study coordinated by the Celiac Sprue Research Foundation and the Palo Alto Medical Foundation.   If it is successful, it could lead to the development of a therapeutic drug that might allow celiac patients to consume a regular gluten containing diet.

It will take place in October and December.  During the first stage of the study, participants will be randomly chosen to consume an orange juice mixture containing gluten or an orange juice mixture containing a pre-treated enzyme (PEP) that is intended to “detoxify” the gluten.  After a month off, the participates will switch groups.  During both portions of the study, participants will be asked to record their symptoms daily and have laboratory test. 
To learn more, visit www.celiacsprue.org.

Although we were very sad to see Andrea Yoder leave, we are happy to report she made it safely home and is enjoying being with her family.  In early January, she will be heading off to Culinary Institute of the Arts in New York for her next adventure.  She would love to hear from you at yoderpc@hotmail.com.

At the September meeting we welcomed Laurie McCotter, RD to the group.  She is a UVAHS dietitian who will be taking the lead in running the support group after the first of the year.   Please feel free to contact her with suggestions or questions.
Laurie McCotter email:      lhm6q@virginia .edu