THE SPRUE-NIK PRESS
Published by the Tri-County Celiac Sprue Support Group,
a chapter of CSA/USA, Inc. serving southeastern Michigan
Volume 9, Number 2 February 2000
**********************************************************************
...........................................
: What's Inside :
: ------------- :
: Miscellaneous Notes :
: Newsletter Roundup :
: Touring France, Channel Islands :
: Chef Bob's Eating Out Tips :
: Review of Recent Research :
: College Bound for Celiacs :
: Living with Chronic Illness :
:.........................................:
References
Disclaimer
Miscellaneous Notes:
--------------------
What Are You? The following originally came from the Regina Chapter
of the Canadian Celiac Association, and was reprinted in the
Jul/Aug/Sep 1999 issue of the Edmonton Celiac Circular:
Are you an active member, the kind that would be missed;
Or are you just content that your name is on the list?
Do you attend the meetings and mingle with the crowd,
Or do you stay at home and crab both long and loud?
Do you take an active part to help the group along,
Or are you satisfied to be the kind to "just belong"?
There is quite a program scheduled that means success if done;
And it can be accomplished with the help of everyone.
Attend the meetings often and help with hand and heart.
Don't just be a member, but take an active part.
Think this over, member, are we right or wrong?
Are you an active member, or do you just belong?
-=-=- -=-=-
Gluten-Free Camp for Kids: The Massachusetts and Rhode Island Celiac
Support Group for Children will host Camp Celiac 2000, July 21-23,
2000, at Camp Aldersgate, North Scituate, Rhode Island. Included are
lodging, canoeing, swimming, outdoor adventures, campfires, and best
of all, completely GF meals! This all inclusive weekend is open to
celiacs ages five and older. Reservations are on a first-come,
first-serve basis and are expected to fill up quickly. For more
information email csgc@ix.netcom.com; visit their website at
http://members.home.net/kellyleech/celiac/csgc.html; call
508-399-6229 (ask for Tanis), or write to MA/RI CSSG for Children, 11
Level Acres Road, Attleboro, MA 02703-6843. The deadline for
reservations is April 7, 2000.<1>
-=-=- -=-=-
Gluten-Free Bouillons: Here's an example of a company that has gone
out of its way to respond to celiac needs. When Virginia Frisbee
called Orrington Farms to ask about the gluten-free (GF) status of a
product, Alan Levin called back to say that it was not GF. But he
also suggested that his company could put together something that was
GF. A few days later he called back with news of a product ready for
sampling! He even contacted his suppliers to see if their ingredients
were GF. He then sent jars of beef, chicken, ham, and seafood
bouillon/soup base to sample. Virginia reports that they were
wonderful!
Virginia suggests we give them our business. If enough of us purchase
from them they will see that there is a market for GF products.
The GF bouillons are available in 1 lb. jars. The seafood bouillon
is $6.88 per jar, and the other flavors are $4.75 per jar. Write to
Sams Food Group Inc., 7461 South Sayre Ave., Bedford Park, IL 60638;
call 708-563-0870; or fax 708-563-0789.<2>
-=-=- -=-=-
Helpful Tips from the Readers, edited by Terry Kotlensky
This month I decided to share with you some tips I have about bean
flour. I have been using bean flour and with great success! One type
I use is Beans 'R' Us. I mix 2 cups rice flour, 2/3 cup Beans 'R' Us
flour, and 1/3 cup tapioca flour. When using bean flour I omit
xanthan gum. (Does it really even do anything? I have left it out
and never noticed a difference.) Bean flour is very moist. I use
this mixture as my multi-purpose GF mix.
Now, where to find bean flour. It isn't always easy or convenient.
Until now! For Beans 'R' Us call 313-567-6046 or visit them on the
web at http://www.beanflour.com. Another great source for all sorts
of good stuff--including Garfava flour--is Cecilia's Gluten Free
Grocery at 800-437-9086 or http://www.glutenfreegrocery.com. Call
for a catalogue, it's excellent!
For the next newsletter, I'd like to get tips from anyone who has
tried recipes from Bette Hagman's newest bread cookbook. Which
recipes were your favorites, which ones were fast and easy to make,
good for travel etc... You can call me at 810-632-3083 or e-mail me
at thisit@bignet.net. Thanks, until next month!--Terry Kotlensky
-=-=- -=-=-
Gluten-Free "Oreos"(tm): Glutano has a new product called Chocolate
O's Sandwich Cookies which taste like "real" Oreo(tm) cookies. They
are egg-free, and can be purchased from The Gluten-Free Pantry for
$2.69 per box. Each box contains 26 little cookies. E-mail
pantry@glutenfree.com or call 860-633-3826.<3>
Return to the Table of Contents
Newsletter Roundup
------------------
Compiled by Jim Lyles
This section contains articles and excerpts from newsletters produced
by other celiac groups.
............................................
: :
: Excerpts from _CSSG Newsletter_ :
: ------------------------------- :
: Nov. 1999 Barbara J. Wieland, editor :
: 5903 S. Tecumseh Rd. :
: Springfield, OH 45502 :
:..........................................:
Kroger GF List: Evelyn Mefford contacted Kroger by phone, and as of
June 1999 these Kroger label items are gluten-free:
cream cheese
hard cheese
yogurt without cookies
ice cream without cookies
sherbet without cookies
whipped topping
mayonnaise, regular and lite
all gelatins
all puddings
all peanut butter
milk chocolate baking chips
peanut butter baking chips
butterscotch baking chips
all oils and cooking sprays
plain potato chips
crunchy cheese snacks (like Cheetos(tm))
salmon
ranch-style chip dip
garden mixed vegetable chip dip
fiesta chip dip
salad dressings: Lite French, Lite Italian, Lite Ranch, Lite 1000
Island, Caesar, Ranch, Buttermilk, Creamy Cucumber, Italian,
Zesty Italian, Red French, Red Wine Vinegar and Oil
Return to the Table of Contents
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: :
: Excerpts from the Greater Philadelphia CS Support Group :
: ------------------------------------------------------- :
: newsletter: Oct. 1999 Phyllis J. Brogden :
: 6318 Farmar Lane :
: Flourtown, PA 19031 :
:.........................................................:
Touring France and the Channel Islands, by Marilyn Dommel
--------------------------------------
After spending two weeks in the Channel islands and northern France
this summer, I wanted to pass along some gluten-free (GF) travel tips
that worked for me. A warning: what I prefer to eat--mostly fruits
and vegetables, GF breads, and skim milk--won't satisfy every celiac.
Our tour moved fast, sometimes sleeping in a hotel only one night,
which meant I had little or no advance time to confer with chefs. (A
quick lunch stop in a French sidewalk bistro with a harried
waitress....who doesn't speak English? C'mon!!) Instead of mammoth
cookie cutter, American-style hotels, we stayed at charming small
inns.
FIRST--Since the tour included breakfast and dinner at our hotel each
day, the tour director faxed copies of my GF diet ahead to each hotel
where we were to stay....months ahead of time. Extremely helpful!!
This way, even when I had no advance time with the hotel chef, they'd
see my smiling GF face and say, "Ahh, you're the one." Together we'd
quickly talk over the menu and they were prepared to offer me correct
food.
SECOND--Don't believe that rumor, "everyone speaks English these
days." I found plenty of foreign shopkeepers and waiters who didn't.
If you're travelling in a foreign country and you are not fluent in
the language--refer to the back of Jax Peter Lowell's book, Against
the Grain. She's kindly printed brief foreign language explanations
of our diet restrictions. Find the language you require, make about
ten or twelve copies, and take these with you on your trip. Keep
these copies handy for quick hand-outs, not buried in the back vaults
of your locked suitcase. More on these copies later.
THIRD--Assemble, well before travel time, essential GF foods you
require to keep you alive. Don't wait till the last minute! Your
health food store might be out of your favorites. My husband thought
I was crazy, packing a small box of GF food to take along. Even the
tour director assured me that France had wonderful grocers everywhere.
But that still small voice inside (panic!!) told me to pack some GF
food. Sure enough, I NEVER saw one health food store in two weeks of
travel, and only one pack of GF cookies....and that was on my very
last day. Here's a list of the food I took along. Again, this
probably won't work for everyone, but it was perfect for me.
Food Packed for Two Weeks Foreign Travel
* 2 rolls rice cakes
* 2 one-gallon size zip-lock bags of my GF cereal mix (flakes,
Arrowhead Mills puffed corn, and puffed rice)
* 10-12 individually wrapped granola bars (I used G-Foods bars)
* rice bran--travel can be constipating
* 1 loaf Ener-G vacuum-sealed bread (great to open after about 4-5
days, when my own muffins had gotten moldy)
* 10-12 muffins (I bake my own)
* a bag of bags: 1 one-gallon size zip-lock plastic bag filled with
6 quart-sized zip-lock bags, plus 1 or 2 additional one-gallon
size zip lock bags. The smaller bags are great for carrying
cereal to the breakfast table, or muffins/bread/rice cakes
around in a fanny pack during day travel.
FOURTH--Be certain the airline knows you require a GF diet....either
by phoning them yourself, or having your tour director make this
request for you. British Airways gave me a marvelous food tray on my
flights to and from London. But, celiacs should carry GF food with
them on board anyway, in case their airline fails to process the
request.
On the actual trip, I carried a small zip-lock bag of GF cereal to
breakfast each morning. Hotel milk and fresh fruit made the cereal
taste great. Fruit juice and/or hot tea completed the meal. I ran
out of cereal the last day or two, so for breakfast I spread several
rice cakes liberally with hotel jelly which filled me comfortably.
When touring during the day, I always tucked these items into my fanny
pack: a granola bar or small bag of two rice cakes, a piece of fresh
fruit purchased at local produce stands, and a 12-ounce water bottle.
I continually refilled the water bottle throughout each day. The
above is a great mid-morning or emergency snack. I also carried two
muffins for lunch. Most times I ordered some form of salad--actually
vegetable--but some salads had sliced meat, cheese, or hard-boiled
eggs in them. The beverage was usually milk or tea. This form of
lunch is fairly quick and easy to order, even when you don't speak the
language....and the waiter doesn't speak yours.
For dinner, if possible, scan the menu in advance at each
locale--sometimes as soon as you check in to your hotel--to avoid
last-minute fluster. Speak with the chef, if possible, to discuss
menu ingredients. Remember those Xerox copies of GF diet restrictions
from Against the Grain? Write your name and hotel room number on a
copy and relay this slip to the hotel chef via the front desk. Very
helpful, for the chef and for you.
Now....a plug for the marvelous hotel whose chef surprised me
immediately upon check-in with an exciting GF menu. (Regrettably I've
forgotten the man's name). GF pasta (pasta!! I was thrilled!), a
loaf of Ener-G GF bread, a special chocolate mousse made just for me,
and wonderful entrees. I was the envy of my co-travelers. This
gorgeous hotel, located right on the English Channel on the island of
Jersey, is called The Water's Edge Hotel. You can fax them at 01534-
863545, or e-mail them at delrich@super.net.uk.
Return to the Table of Contents
........................................................
: :
: Excerpts from the Healthy Villi Celiac Support Group :
: ---------------------------------------------------- :
: newsletter: Autumn 1999 Melinda Dennis, editor :
: 95 Orchard St., #2 :
: Somerville, MA 02144 :
:......................................................:
Chef Bob's Tips for Eating Out, by Elise Gorseth
------------------------------
"Chef Bob" is Bob Otolo, founder of Gillian's Foods. He has been
involved in the food industry for over 25 years and held the position
of Executive Chef for 15 years at a number of well-known
establishments including Skipjack's and Embassy Suites Hotel in
Florida.
Bob's transition from chef to gluten-free (GF) baker began when his
daughter, Gillian, was diagnosed with celiac disease (CD) at age 6.
The chef who was used to creating entire menus and planning meals for
hundreds of people on a daily basis admits to being "stumped" when
faced with his daughter's GF dietary requirements. The family went
back to the basics of eating, throwing all wheat products out of the
kitchen and focusing on simple meals such as steak and rice. Slowly
they began to cook again, discovering that many dishes don't require
wheat flour as a base. Improvisation yielded GF versions of former
favorites that both family and guests alike loved.
However, finding a satisfactory GF substitute for bread eluded him.
Not a baker by training, Chef Bob spent two years formulating the
rolls that are now sold under the appropriately named label Gillian's
Foods. He left the restaurant world behind and now devotes himself
full-time to the business, which sells more than 100,000 GF rolls per
year, along with GF bread crumbs, frozen pizza dough and his newest
product, breaded chicken breasts. There are plans in the works for
new products, including stuffed chicken breasts and baked chicken and
ziti frozen meals.
I recently met with Chef Bob to discuss the do's and don'ts of eating
out GF. His bottom-line message is: "Simplify!". Here are some of
his tips:
* Eat Locally. Frequent patronage of an eating establishment is one
of the best ways to get good service. Get to know the staff; once
they understand what your needs are, they will be more willing to
help you get the GF meal you want and will take pride in making it
delicious.
* Learn About Food. Find out what the ingredients in your favorite
dishes are and how these dishes are prepared in a restaurant. Not
only will this help you ask the right questions about other items on
the menu; you will be able to make suggestions about possible
substitutions that would make it GF.
* Flattery Will Get You Everywhere. Contact the chef at a restaurant
you've eaten at and tell him or her that you like the food, then ask
if he can make your favorite dish GF for you the next time you come
in. Have suggestions of foods that you like which would blend well
with his menu and be easy to adapt to be GF.
* Plan Ahead. Call in advance and speak to the chef about your needs.
Typically the best time to call is 2-5 pm when the kitchen is the
least busy and the chef will be most relaxed and able to talk to
you.
* Have Suggestions. For example, ask the chef if he/she can prepare a
saute and serve it over GF pasta that you provide. Let the chef
know that it is essential that your meal be cooked using separate
utensils to prevent contamination from other dishes that may not be
GF.
* Beware of Sauces and Soups: They are usually prepared in advance so
the person who knows what the ingredients are may not be working at
the time that you visit the restaurant. Many restaurants use
powdered soup bases that are usually not GF, so only risk soup at a
restaurant where the stock is homemade and all of its ingredients
are known.
Gillian's Foods can be purchased on-line at .
For more information, call 781-286-4095.
-=-=- -=-=-
Return to the Table of Contents
Review of Recent Research, by Elise Gorseth
-------------------------
Four recent articles published in the British Medical Journal have
focused on the widening scope of celiac disease diagnosis. These
summaries give you an idea of what each article contains. The
full-length articles can be obtained free on the internet at
http://www.bmj.org.
1. "Prospective study of body mass index in patients with coeliac
disease", by William Dickey, Shelagh Bodkin, Altnagelvin Hospital,
Londonderry, Northern Ireland.
Population screening suggests that coeliac disease is much commoner
than previously supposed. The prevalence of biopsy-proved classic
coeliac disease, with subtotal or total villous atrophy of the
small bowel, ranges from 1:150 to 1:300 in adults in western Europe
and many patients have mild symptoms. We noticed that few of our
new patients with coeliac disease were obviously malnourished and
conducted a prospective study of body mass index to investigate
further.
BMJ 1998;317:1290-1290
2. "Coeliac disease in primary care: case finding study", by Harold
Hin, Graham Bird, Peter Fisher, Nick Mahy, Derek Jewell.
* General practitioners currently see many people with undiagnosed
coeliac disease.
* The most likely presentation is a combination of microcytic
anaemia, past or present, a family history of the disease, and
feeling tired all the time.
* Estimations of endomysial antibody and IgA are reliable
diagnostic tools.
* The prevalence of coeliac disease in Britain is higher [more
common] than the accepted figure of 1:1000 population.
* Increased awareness of the extra intestinal manifestations of
coeliac disease, coupled with a low threshold for serological
testing, will uncover a large portion of undiagnosed coeliac
disease.
BMJ 1999;318:164-167
3. "Fortnightly review: Coeliac disease", by Conleth Feighery,
Department of Immunology, St. James's Hospital, Dublin, Ireland
This is a great review article, and is "based on the proceedings of
regular international symposiums and meetings on coeliac disease,
textbooks, review articles, and searches of Medline". If you are
confused by all of the information available, this article is a
great place to start identifying what is relevant and what is not.
BMJ 1999;319:236-239
4. "Gluten sensitivity: A many-headed hydra; Heightened
responsiveness to gluten is not confined to the gut", M.
Hadjivassiliou, R.A. Grunewald, G.A.B. Davies-Jones, Department of
Neurology, Royal Hampshire Hospital, Sheffield, UK
The authors are neurologists who claim to have shown that
neurological dysfunction may be the only symptom exhibited by some
patients with celiac disease. A very interesting article which
endorses M.N. Marsh's definition of gluten sensitivity as "...a
state of heightened immunological responsiveness to ingested gluten
in genetically susceptible individuals."
BMJ 1999, 318:1710-1
Return to the Table of Contents
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: :
: Excerpts from the Houston Celiac-Sprue Support Group :
: ---------------------------------------------------- :
: newsletter: Nov. 1999 Janet Y. Rinehart, President :
: 11011 Chevy Chase :
: Houston, TX 77042-2606 :
:........................................................:
College Bound for Celiacs, by Jessica Mahood, Diane Paley, and Janet
------------------------- Rinehart
Before leaving for college, students learn to do their own laundry,
manage a checkbook, and prepare for independent living. Celiac
students have additional challenges--not only considering the
limitations of the celiac diet when looking for a college, but
accommodating those needs in a college environment. Both are possible
with a good helping of research, planning, and family support.
Reputation, distance, and size are major considerations when choosing
a college. Celiac students need to examine those factors in light of
the diet. The first step is to research the living situation for
freshmen students. Most likely, it is a dormitory. If at all
possible, it is best to be in the same living situation as students
your age. Freshman year is the year that many friendships are made,
and it can be very lonely living in an off-campus apartment when you
don't know anyone. Never forget, however, that your health comes
first. If dorm life seems unfriendly to the gluten-free (GF) diet,
then keep looking for alternatives. Having a small apartment near
campus is a viable alternative. It may be less hassle for you to have
your own fridge and cooking appliances, rather than risking
contamination in the cafeteria.
Once you have scoped out the living situation, contact the housing
director, food service manager/administrator, and director of student
disabilities. Set up a meeting to sit down and go over your dietary
needs in terms of what the university can and will offer to do to
accommodate those needs. It may be helpful to bring copies of a
medical statement from your family doctor of your celiac disease (CD)
diagnosis and treatment to share with the Dean of Students, Dean of
Housing, and Food Services Administrator. This will discourage them
from classifying CD as a "preference" or treating it as such. The
celiac diet is recognized by the Americans with Disabilities Act,
which obligates them to provide reasonable accommodations for your
needs.
You absolutely, 100% need to be healthy to function in college.
College is stressful and challenging, and your grades and
relationships will suffer if you are getting sick from gluten
contamination. With that in mind, many celiacs choose a smaller
university that offers more direct contact with administrators and
staff. Most universities have rules about what appliances and
appliance sizes are allowed in the dorm rooms. A smaller school may
also be more likely to "bend the rules" to allow you to have
additional appliances in your room or storage space in their cafeteria
freezers. When you meet with the school representatives, talk about
this. Would they allow you to have a slightly bigger refrigerator so
that it could have a freezer? What about a toaster, microwave, or
rice cooker? Next, consider the cafeteria situation carefully. Would
you generally be eating at one cafeteria, or several? See if you
could meet with the cafeteria manager and chef on a weekly basis to go
over the menu items for the c oming week, talk about ingredients and
preparations, and read labels if necessary. Some cafeterias are even
willing to follow your GF recipes or reheat GF items that they store
in their freezers.
Once you have determined that yes, you can live there and yes, they
can feed you, now is the time to start preparing to head off to
college. Give your roommate a call as soon as you receive your
housing information. Find out if he/she is going to be willing to
respect your food, as well as your space. If he/she seems like a
chronic baked goodie raider, talk to the housing director again and
see if you can switch. Sometimes a substance-free or quiet dorm
attracts people that are less likely to party and end up with the late
night munchies--and temptation to dip into your food stock.
Now, get yourself prepared for eating smart. Stock up on GF foods,
mixes, and pre-made GF meals. Consider making your own recipe book of
easy-to-make items. Bette Hagman's Gluten-Free Gourmet and Carol
Fenster's Special Diet series have many recipes. These are valuable
to have with you, but often require a lot of ingredients and
preparation time that may not tally with the hectic college schedule.
If at all possible, bake like crazy the summer beforehand and freeze
these items. Individual meals stored in Tupperware can make fast and
tasty GF "TV dinners"--especially if you have access to a freezer and
microwave at school. If a parent or relative can make a trip to your
college every so often to re-stock your food supply, then you may not
have to do much baking at all during the semester. This is another
reason that distance needs to be factored in to your college choice.
But, if you are planning on being miles and miles away from mom and
dad, request a GF care package every so often. They will proba bly be
happy to oblige.
Pick up an updated list of GF foods and products so that you can not
only eat smart, but avoid any hidden glutens. Fast reference guides
are definitely a plus. The CSA Handbook, CSA Product Listing, and
Stokes' Guide to the Medicine Cabinet are "musts" to add to your
collection. [We would recommend our own shopping guide over CSA's, as
ours is more up-to-date at this point. None of the information in our
shopping guide is older than January 1998.--ed.] While you are
researching and gathering information, you may want to consider making
up a celiac "basics" guide for your cafeteria and dormitory
supervisors. This will give them something to reference concerning
your diet, as well as take some of the mystery out of CD. Be careful
to mention, however, that no information packet can mention every
"taboo" product/food item or every nuance of information about gluten
intolerance. It's still best to consult the expert--you.
Now that you have fed your mind and filled your freezer, make sure
that your body is ready for this challenge. Freshman year can be an
incredible experience, but it is also a strain. Generally, a physical
examination is required by the university. Make sure that your
nutritional levels are normal, and (if you haven't done this already)
ask your doctor to make an official statement about your celiac
diagnosis for the school's medical records and any new doctors or
dentists. Include pertinent information about medications or
vitamins. Prepare for the worst but expect the best, as they say.
This may also include a plan for hospitalization, should the need
arise. Coordinate with the medical center staff, and choose a
knowledgeable person to advocate for your dietary needs--GF
medications included. Get a health ID bracelet such as a Medic Alert
that states that you are on a GF diet. Then, wear it religiously--no
one seems to notice or care at college. Insure that you have ID on
your person at all times, and that your friends or roommates know
where you are. Some basic safety and common sense may save you a lot
of grief.
Now you are at college, beginning classes, and meeting all kinds of
people. All of a sudden you realize that much of the college social
world centers on two things--food and alcohol. You tend to have
problems with both, in the celiac sense. First, deal with the food
issue. Talk to your roommates and friends about the celiac diet. Let
them know that you are not offended if they eat in front of you, and
that having a pizza in the same room will not send you into toxic
shock. Keep your own GF goodies handy so that you can join in on the
snacking. Or, suggest popcorn or ice cream as an alternative. You
may also want to, at some point in time, cook a GF dinner or dessert
for your friends so that they know that GF food does not taste strange
and disgusting. If you go out to eat with your friends, even on a
college budget, suggest a restaurant that will have some plain menu
items that you can eat. If need be, sneak along some GF rolls, bread,
or snacks. Most likely, no one will make any fuss about this. It is
your attitude towards the diet that will determine how your friends
treat it. If you are open and friendly about it, then they will be
too.
Aside from the food issue is the alcohol one. Granted, by law you
shouldn't drink before you are 21. However, that may not be very
realistic at college. Generally, college parties serve beer or some
kind of "punch". Stay away from both. It's probably best to avoid
the punch even if you aren't a celiac--you never know what "extra
flavoring" was provided by frat boy "X" or his friends. Don't weep
too much for the loss of drinking from the keg--the infamous "freshman
fifteen" usually comes from beer. Check out the CSA/USA Handbook or
the Internet to find out what drinks are GF. Typical parties suggest
BYO, as they say; bring your own and don't let it leave your side. Go
with a group and stick with them. Be safe and smart about how you
party.
Once you are at college, check the yellow pages for local health food
stores and grocery stores that carry GF items. Many manufacturers
will also ship directly. "Natives" to the area can recommend suitable
stores, restaurants, and pharmacies that are GF-friendly.
Above all, keep your chin up and your good sense active. Don't cheat
on the diet; you will only end up unhealthy, unhappy, and unsuccessful
at your college endeavors. Once you have CD, you have it for life.
Every little bit of gluten damages internally, and it may haunt you
sooner than later. Take the extra time to read a label, snag your own
goodie to bring along, and talk to friends and university staff about
your needs. The diet is sometimes a hassle but it is a necessary one.
So, do your research, take the time to plan, and involve your friends
and family in the process. College preparation may require a great
deal of work, but in the long run, it will provide opportunities and
experiences to last the rest of your life. Best wishes!
Return to the Table of Contents
...............................................................
: :
: Excerpts from _Derby City Celiac_ :
: --------------------------------- :
: Fall 1999 Bill Banks, editor :
: Greater Louisville Celiac Sprue Support Group :
: PO Box 7194 :
: Louisville, KY 40257-0194 :
:.............................................................:
Living with Chronic Illness, Laurie Grimes, Ph.D.
---------------------------
Laurie, a child psychologist and parent of a child with celiac disease
(CD), spoke at the June 10 meeting about the psycho-social aspects of
chronic illness and, specifically, about living with CD. The talk
began with a discussion of the stresses of chronic illness, such as
asthma, cystic fibrosis, diabetes, and CD, and the psychological
issues that typically accompany each stage of such illnesses.
At the initial diagnosis stage, among the many emotional hurdles are
reorganizing family routines, managing reactions of family and
friends, learning to accommodate community outings, and the pervasive
sense of loss and grief that may accompany the feelings of having lost
the "normal, healthy self." These feelings of grief and sadness often
ebb and flow throughout the course of the patient's life as the
illness is gotten used to and then the burdens of managing one's
health feel burdensome in comparison to the lives of others.
Transition periods are often particularly difficult because they
entail establishing a new routine in a new environment and.
indoctrinating new people to the illness. For children that involves
beginning school, going to a sleep-over, and going off to college, and
for adults it can be moves, retirement, travel, or any number of new
stages of life. The sense of control and feeling of "normalcy" may be
disrupted in transition periods which is stressful and may occasion
feelings of sadness or irritation at being burdened with this
condition.
Other life-long social and emotional issues that are present from the
point of diagnosis are maintenance factors--the routine necessary to
keep your body healthy. Adhering to the routine and complying with
the treatment, and coping with social isolation and strain on
relationships are some of the many chronic psychological stressors.
Of course, the severity of the psychosocial pressures varies by
illness and by person. The severity of the illness, prognosis for
healthy living, difficulty and hassle level of the treatment, as well
as an individual's personal coping style and perception of the
illness, level of support, and sense of control have a strong
influence on the experience of living with a chronic illness.
The talk concluded with a more focused look at the experience of CD in
comparison to other chronic illnesses. Psychological issues are
pertinent to celiacs for several reasons:
(1) Before diagnosis the symptoms frequently include
emotional/behavioral problems, often with a referral to a mental
health professional.
(2) CD often co-occurs with mental health problems.
(3) There are some links to depression, autism, ADD, etc.
(4) There are coping and adapting issues after diagnosis, as discussed
above.
Despite involved and difficult restrictions necessary for adherence to
a gluten-free (GF) diet, CD can be seen as the "lesser of chronic
illnesses". Not only are there no medicines, surgeries, or therapies
necessary, but unlike other chronic illnesses for which the diagnosis
may signal a gradual decline in health or a chronically fragile
health, with the onset of the GF diet, persons with CD can, for the
most part, look forward to a healthy and lengthy life.
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References
----------
<1> "Camp Celiac 2000", by Tanis Collard, from the CELIAC Listserv
archives on the Internet, posted Dec. 19, 1999. To obtain a copy,
go to http://maelstrom.stjohns.edu/archives/celiac.html and
click on "December 1999, week 3".
<2> "gluten free soup/bullion bases", by Virginia Frisbee, from the
CELIAC Listserv archives on the Internet, posted Jan. 17, 2000.
To obtain a copy, go to http://maelstrom.stjohns.edu/archives/celiac.html
and click on "January 2000, week 3".
<3> "GF 'Oreos'", by Jessica Mahood, from the CELIAC Listserv archives
on the Internet, posted Jan. 19, 2000. To obtain a copy, go to
http://maelstrom.stjohns.edu/archives/celiac.html and click on
"January 2000, week 3".
Return to the Table of Contents
Tri-County Celiac Sprue Support Group Officials:
------------------------------------------------
Physician Advisor: Thomas Alexander, M.D.
Pediatric Advisor: Robert Truding, M.D.
Dietitian Advisor: Dorothy Vaughan, R.D.
President: Mary Guerriero
Vice President: Sue Gentilia
Past President: Diane Morof
Finance Committee: Tom Sullivan
Sue Gentilia
Secretaries: Marilynn Ponto
Pat Michael
Web Page Editor: Pam Murphy
Newsletter Editor: Jim Lyles
Contributing Editors: Tom & Carolyn Sullivan
Group E-mail address: tccssg@yahoo.com
Group web page: http://community.mlive.com/cc/celiac
Disclaimer:
-----------
All recommendations, information, dietary suggestions, menus, shopping
guide suggestions, medical updates, miscellaneous articles, and
recipes in this newsletter are intended for the benefit of our
members, readers, and the general public. No liability is assumed by
the Tri-County Celiac Sprue Support Group or any of its members.
Information in The Sprue-nik Press has been approved by our
physician and dietitian advisors. Individuals should consult with
their physicians and dietitians before following any medical or
dietary recommendations in The Sprue-nik Press.
Original material used in The Sprue-nik Press is placed in the
public domain for the benefit of all celiacs. The information is not
copyrighted to facilitate the easy exchange of celiac information.
Feel free to reproduce any portion of this newsletter, unless it
specifically states otherwise. All we ask is that you indicate where
the information came from.
The Sprue-nik Press is published by the Tri-County Celiac Sprue
Support Group (TCCSSG), a local chapter of CSA/USA located in
southeast Michigan. Members receive printed copies of this newsletter
(8+ issues per year), a shopping guide, and a new member packet full
of articles and useful information. Out of area subscriptions are
welcome. For subscription information, send a note to
tccssg@yahoo.com.
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