<<Disclaimer: Verify this information before applying it to your situation.>>
Newsletter Roundup
------------------
compiled by Jim Lyles
This section contains articles and excerpts from newsletters produced
by other celiac groups.
...............................................................
: :
: Excerpts from _Derby City Celiac_ :
: --------------------------------- :
: Fall 1999 Bill Banks, editor in chief :
: 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.
...........................................
: :
: Excerpts from _Gluten-Free Friends_ :
: ----------------------------------- :
: Fall 1999 R. Jean Powell, editor :
: Montana Celiac Society :
: 1019 So. Bozeman Ave. #3 :
: Bozeman, MT 59715 :
:.........................................:
Q&A from Dr. Fasano
-------------------
The following comes from a presentation by Dr. Alessio Fasano in
Billings, Montana on June 19, 1999. Dr. Fasano is involved in a
study at the University of Maryland which is trying to determine the
prevalence of Celiac Disease in the USA.
Q: What is the ratio of men to women with Celiac Disease (CD)?
A: Of the 1400 we've tested so far, 58% are females. Of those who've
tested positive, the ratio is half and half.
Q: I have a strong family history of CD, but I can think of no one in
my family who has a related auto-immune disorder such as lupus or
diabetes. Is that something I still need to be concerned about?
A: Not necessarily. It is not a given.
Q: Have you noticed a correlation between non-compliance with the
gluten-free (GF) diet and autoimmune disorders being more
prevalent?
A: Yes! Stick with your diet!
Q: After you stop eating gluten, how long is it before symptoms
subside?
A: This is a good question. Our experience is based on how long
you've been exposed. For kids it may be just a few days; but if
you've been exposed for years and years, it is sometimes 4-6
months.
Q: Is there a connection between CD and Multiple Sclerosis?
A: There is no clear association. There are some anecdotal reports,
but again we're talking about two autoimmune diseases. We can't
conclude that there is such a strong association at this
stage--the numbers aren't there.
Q: About the gluten challenge: my four year-old has been on a GF
diet for about a year now, and it is extremely obvious that he
gets sick if he eats anything with wheat in it. He has not had a
biopsy.
A: Again, I think you're in the kind of situation in which you are
extremely convinced and committed to the disease. Believe it or
not, you are in a very lucky situation, because if you were to do
the challenge, as I would strongly recommend, the time needed to
do the entire thing would be brief: he would probably react
quickly, the antibodies would probably go crazy quickly, and you
could then do the biopsy immediately. It's an investment in the
future. You have to understand--and this is well
demonstrated--your child may react quickly now, but when he is 14
or 15 this is not necessarily going to happen.
I don't want to scare anybody, but I want to share with you a sad
story. A few months ago a lady came from Philadelphia, 44 years
old, with intestinal lymphoma. She, as a child 6 years old, was
diagnosed celiac. When she was 10 she was told that she would
grow out of it. She exposed herself to gluten and indeed she did
not have any relapse of symptoms until she was 42--and her symptom
was intestinal lymphoma. She came to me because she has a 6 year
old girl whom she wanted screened and indeed the daughter happened
to be celiac. You can bet the girl will be on a GF diet for the
rest of her life!
So--a short time of aggravation now, followed by a biopsy, will be
a tremendous investment in the future.
Audience member's comment: If you can put your child through the
misery in the summer, then get him diagnosed before school starts.
That way you will avoid having your child labeled with Attention
Deficit Disorder (ADD). Also, with a biopsy diagnosis, doctors
will not be so apt to try to convince him when he is 20 that he's
"not really" a celiac and encourage him to go off the diet.
Dr. Fasano: That's true and has been our experience as well.
Q: If I get the biopsy, should I also say that I'm looking into the
possibility of lymphoma as well?
A: If you're celiac and you've been diagnosed, and put yourself on
the GF diet, then your changes of getting lymphoma are about the same
as the general population.
Q: How old do you want children to be before you do the biopsy?
A: I don't want children to have the biopsy unless there's some
indication that the antibodies are there, there is a family
history, and there are symptoms (due to the environmental exposure
to gluten). There is no age limit; we do the endoscopy to
neo-nates (newborns) who are having problems.
..............................................
: :
: Excerpts from _CDF Newsletter_ :
: ------------------------------ :
: Fall 1999 Sheila Morrison, editor :
: Celiac Disease Foundation :
: 13251 Ventura Blvd., Suite 1 :
: Studio City, CA 91604-1838 :
:............................................:
Singing the Beignet Blues, by Karen Davis, the Gluten-Free Guru-illa
-------------------------
Beignet, n. A fried pastry usually square and dusted with powdered
sugar, consumed as a snack with coffee, especially in New
Orleans.
Those of us on a gluten-free diet for life have undergone, whether we
like it or not, a life-changing diagnosis. Bread, the "staff of life"
to most with European ancestry, is our figurative and literal poison.
Something that is a central part of our lives is about to change in a
radical fashion. Something is, and forever will be, missing. The
remainder of this article attempts to present a layman's view of the
psychological adaptations necessary to successfully live gluten-free
forever.
This "minor" change in lifestyle can cause one of two major changes in
our mental state (attitude). The minority (the born problem-solvers
and young children) usually experience relief that the problem has
been identified and quantified then move quickly to "okay, I can no
longer eat gluten... what can I eat?" These are the people who adapt
with little or no grief and get on with the business of life. Young
children really haven't experienced the wide world of gluten and don't
miss the tastes, the problem-solvers quickly figure out that getting
sick "isn't worth it." The rest of us generally experience what the
mental health profession refers to as a "grief state". Once we enter
the grief state usually immediately after meeting with the dietitian
we go through a series of stages in learning to cope with our changed
life status. Trying to short-cut this process rarely, if ever, works.
Those who try generally get stuck in the first part of the
process-denial.
The grieving process was broken down by Dr. Elisabeth Kubler-Ross in
her classic book _On Death and Dying_<2> as follows:
Stage 1: Denial
Stage 2: Anger
Stage 3: Bargaining
Stage 4: Depression
Stage 5: Acceptance
(These stages can occur in different order, and also can recur.)
As applied to our changed life-style most of us react in an analogous
fashion--we disagree with the diagnosis, looking for something,
anything else, or we believe that the steps necessary for controlling
our illness (the diet) don't apply to us. People who get stuck in
denial are also the ones who don't get better after diagnosis or have
repeated relapses, as they don't follow the diet 100% of the time.
The next stage of the process is anger--usually directed at the
outside "normal" world. We become angry that we are "different", that
we can't eat what everyone else eats. We are also angry because this
change was not our choice--that some outside "authority" imposed it
upon us. This is the most dangerous stage for most of us, as we are
liable to eat things we shouldn't when we get angry. Getting safely
through this stage often involves removing all gluten-containing foods
from the house and carrying our meals with us wherever we go, so we
can continue to eat safely. If extended family members are not
cooperative, this step may also involve abstaining from large family
functions where food is involved, unless we bring our own. This is
also when we generally learn that at least outside our homes (or other
safe places), that simple is best.
Once we have mostly mastered our anger at this change in our life
situation, we pass into the stage of bargaining with ourselves, our
family, our doctors...the "just a little bit can't really hurt" phase.
Hopefully, we have abstained enough from gluten and recovered enough
health in the prior phase that any resumption of gluten intake leads
to a swift and unpleasant reaction. Most of us don't try bargaining
too long.
When we learn that bargaining doesn't work, depression, or the "oh
poor me" syndrome, sinks in. We want to hide from the gluten-filled
world, and stay where life is safe. We want people to feel sorry for
us (our "poor deprived selves"). We can stay depressed as long as we
want to, but life is more fun if we don't. Note that prolonged
depression, which cannot be shaken, may be organic in nature, and
needs to be evaluated promptly and treated by a trained professional
(psychiatrist). Many celiacs experience organic depression for two
reasons: our bodies do not absorb all the nutrients needed for proper
brain chemistry; secondly, many of these nutrients are found in the
highest concentrations in precisely those foods which have been
omitted from our diets. Once we are able to shake the depression that
comes from a changed life status, we move into the final phase of
learning to deal with being a celiac: acceptance.
Acceptance of our status as a life-long celiac means that we have
learned, and now constantly practice, active measures for taking back
control of our lives and protecting our health. We call ahead to
verify restaurant menus. We learn where to shop for, and prepare, the
gluten-free foods most pleasing to our own palates. We have learned
how to ask for (order) what we need off of almost any restaurant menu,
including fast food, and to avoid the places where we really can't eat
safely at all. Many celiacs who accept their disease can entertain by
preparing gluten free meals so that "no one knows the difference".
We can accept what we have been dealt, leaving behind the beignets,
breads, doughnuts, and other gluten-laced foods, and live a long,
healthy, happy life. We can fight and deny and remain ill. The
choice is ours--which path do you choose?
-=-=- -=-=-
Product News:
Risotto Warning: When dining out, make sure the stock (chicken
broth) is made in the restaurant's own kitchen and ask if the
risotto is made with only rice products. Some "designer" chefs
are now using grains such as barley in their risotto mixture.
--from Beth Hillson of the Gluten-Free Pantry.
Stash Teas are all gluten-free (GF). "Celiac disease is not
uncommon these days and we have made a decision to keep all of
our ingredients gluten-free," states Joy Edlund, food chemist.
For more information, e-mail <[log in to unmask]>.
Eli Lilly: According to James J. McGinty, R.Ph., all their
products, including those from their Dista Products division,
are GF. Wheat, rye, barley, oats, and their derivatives are not
used as dilutents or binders in their products. Further, the
alcohol used in their products is derived from synthetic
(petroleum-based) sources.
Maltodextrins: The USA Food and Drug Administration has defined
maltodextrin as "...a white powder or concentrated solution by
partial hydrolysis of corn starch or potato starch with safe and
suitable acids and enzymes."<3> The food industry usually
refers to corn-based products when referring to maltodextrins.
But in addition to the legally-defined corn and potato versions,
some ingredient manufacturers also produce maltodextrins from
other starchy sources, such as rice and tapioca. Nowhere in the
article does it mention wheat connected with maltodextrins. Dr.
Buford Nichols, USDA/ARS Children's Research Center at Baylor
College of Medicine, researches starches. He said "...in the
USA Maltodextrin is always from corn." Imported products have
no such guarantee--be forewarned. (Aug. 9, 1999)
.........................................................
: :
: Excerpts from the Washington Area CS Support Group :
: -------------------------------------------------- :
: newsletter: Late Fall 1999 Becky Campbell, editor :
: 1332 R Street, NW :
: Washington, DC 20009 :
:.......................................................:
Product Information:
McCormick has some new spice blends and flavor medleys that are
gluten-free (GF). The new GF blends are Key West, Monterey
Style, and Santa Fe. The new GF medleys are Garlic Herb,
Italian Herb, Lemon & Pepper, and Tomato Basil. For more
information, call 800-632-5847.
Starbuck's Rhumba Frappuccino is NOT GF. All of the other coffee
drink items are GF. For more information, call 206-447-1575,
ext. 2900 or e-mail <[log in to unmask]>.
Cabot Cheese products are all GF. The company representative also
assured that there is no possibility of cross-contamination.
For more information, call 888-TRY-CABOT (888-879-2226) or visit
their website at <http://www.cabotcheese.com>.
Neutrogena has confirmed that their new line of cosmetics is GF
except for their mascara. For more information, call 800-217-
1136.
|
