<<Disclaimer: Verify this information before applying it to your situation.>>
============1============ News Highlights
1. Celiac Siblings Research: Dr. John Zone, University of Utah, is
conducting a study of biopsy-proven celiacs. The study needs data from
50 pairs of siblings. Anyone with a celiac brother or sister is
encouraged to volunteer. For details, call Connie Goldgar at (800) 444-
8638, ext. 5070.
2. Joy's Bed & Breakfast is operated by a fellow celiac and the family is
willing to accommodate various diets. It is a restored 1912 home located
at 4308 Main St., Elk Horn, IA 51531. If you plan to visit the area,
give Joy Peterson and her husband Merle a phone call at (712) 764-5631.
Except for January, share breakfast with Joy and enjoy the local sights.
3. CSA/USA Seventeenth Annual Conference is October 7, 1994, at the Romulus,
MI Holiday Inn. For details contact CSA/USA at PO Box 31700, Omaha, NE
68231, phone (402) 558-0600.
4. Celiacs & The Information Highway: Celiac information is available
through some of the on-line computer services. America On Line and
Prodigy support limited CD discussion. Initial discussion started around
GF recipes. The ActionLine is not a member of these groups.
5. Medical Deductions & CD: The extra cost of the diet is a medical expense
deduction. Another possibility to offset the cost of the diet is through
a ``Flexible Spending Fund'' or ``Cafeteria Plan'', section 125 of the IRS
code. This allows a pretax fund for medical expenses. The plan may not
be available to all wage earners. Another disadvantage is that funds not
expended each year on medical expenses are not transferable. If anyone
starts a plan The ActionLine would appreciate the details.
6. Celiac Experience IV: Many readers have requested information on future
cruises. Currently, there is no commitment to plan CE IV. The execution
of a Celiac Experience involves a considerable amount of work to assure a
reasonably priced event that is worry-free, educational, and allows the
celiac family to relax. As is the case in all volunteer organization,
there are always more requirements than available resources. Also, the
organizers have conflicts that are likely to preclude any possible event
during 1995.
One of the CE III passengers obtained information on the cruise to prove
to her doctors that she was not a celiac. After two years on the diet
and no weight gain, it was determined by her doctor that the problem was
bacteria not responding to initial medications. Misdiagnosis of CD is
unlikely, but possible. When the diet does not show improvement, the
physician should question compliance with the diet or an incorrect
diagnosis.
7. Airline Meals are never a sure thing. For celiacs, the uncertainty is
greater. Recently two airlines cut back on meals served on short flights
and most airlines have shortened the meal hours. All of the airlines
make the same general mistakes on special meals and we should consider
ourselves lucky when a GF meal is delivered to our seat. During a trip
in May, Mike Jones was served GF items on two of five legs of a cross
country trip on the same airline. The greatest mistake was a pita bread
sandwich as the entree from San Diego. The old recommendation of eating
before the trip and bringing a snack are still smart concepts for every
traveler with special needs.
8. Americans with Disabilities Discrimination can be researched by calling
the Disability Rights Education and Defense Fund between the hours of
9:00 A.M. and 5:00 P.M. PST at (800) 466-4232. This agency is able
through a federal grant to inform individuals, who may be subject of an
ADA discrimination and their rights and remedies. To report a violation
of the Act, call the Equal Employment Opportunity Commission at (800)
669-EEOC.
9. Child Magazine, February 1994, contained an article from a celiac mother
about adapting to the diet. This uplifting story gave some techniques to
use with a celiac child. Experience with a celiac spouse made the
family's transition easier. Exercise caution with some of the brands
mentioned as they may no longer be GF.
10. Understanding New Labels is easier after clarifying your question with an
expert. Their knowledge of CD is limited. These sources may assist:
. FDA Seafood Hotline (800) 332-4010
. USDA (800) 535-4555
. American Dietetic Association (800) 366-1655
11. FDA news releases, proposed changes in rules, and The FDA magazine are a
few of the subjects available by calling the FDA Bulletin Board, (800)
222-0185. The information is available to anyone with a computer and
modem. The summaries of proposed rules, by date or subject area, are
especially timely in detecting changes that might have an adverse or
favorable impact upon your life style.
12. ActionLine Fact Sheets are designed to cover a single topic. Selected
issues are mailed to new celiacs as a foundation for understanding the
diet. Whenever a new sheet is produced, it is distributed at the next
two monthly meetings. Occasionally, someone will be away for an extended
period and may not be aware of a new fact sheet. Selected topics
discussed in The ActionLine are converted into a fact sheet for the
benefit of readers who were not on the mailing list at the time of
publication. If you desire one of these current fact sheets, please
request one at the next meeting.
1.Celiac Disease (Gluten Sensitive Enteropathy). The pink tri-fold
for distribution through physicians.
2.Familial Incidence of Celiac Disease. Dr. Joseph Murray's CE III
handout.
3.Celiac Disease Information Guide.
4.Gluten-Restricted, Gliadin-Free Diet Guideline.
5.Source of GF Products. Mail order companies and product names.
6.GF Cookbooks. Titles
7.Effect of Small Amount of Gluten in the Diet.
8.Celiac Disease Tests. A discussion of CD identification and
blood tests.
9.Dental Enamel Defects.
10. Welbilt Automatic Bread Machine Sales Outlets.
11. Selected Celiac Experience III Recipes. Recipes using Ener-G
Foods' two new mixes of Feb. 94.
12. Ice Cream Cone Recipe.
13. Gluten Status of Vinegar and Alcohol.
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