<<Disclaimer: Verify this information before applying it to your situation.>>
Newsletter Roundup
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Compiled by Jim Lyles
This section contains articles and excerpts from newsletters produced
by other celiac groups.
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: :
: Excerpts from _Gluten-Free Friends_ :
: ----------------------------------- :
: Spring 1999 R. Jean Powell, editor :
: Summer 1999 Montana Celiac Society :
: 1019 So. Bozeman Ave. #3 :
: Bozeman, MT 59715 :
:...........................................:
Survey Results: Cheating on the Gluten-Free Diet, by Maggie
------------------------------------------------- Springer, research
paper for Behavior Modification Class, University of Montana
Celiac Disease (CD) is a chronic digestive disorder that attacks the
surface of the small intestine, causing a toxic reaction from the
ingested gluten. I was diagnosed with this disease five years ago.
Having this disease means undertaking a new lifestyle by changing your
diet. This is not extremely difficult, but it is very difficult to
adhere to for life. I have decided to come up with a treatment plan
to control my cheating habits, as it is necessary to do so to maintain
a long and healthy life.
I have had CD for some time and despite all the research I have done,
I am still a cheater. Occasionally I try to review the more long term
effects cheating has on my health, yet I still eat gluten. I realize
it is necessary to modify this behavior and adhere to a strict
gluten-free (GF) diet for life, so I have attempted to come up with an
effective treatment plan that will help myself and others who have a
difficult time controlling their problem.
I contacted three different organizations associated with CD, and from
their mailing lists I was able to send out a questionnaire to 50
individuals who also have this disease. I was able to get an idea of
other cheating behavior, and to compare it to my own.
My questions were:
1. Age.
2. When were you diagnosed?
3. After diagnosis, did you deliberately eat gluten?
4. How often do you eat gluten in a week? Which gluten products?
5. If you don't eat gluten products but are tempted, which products
would you prefer?
6. How do you feel psychologically after eating gluten a)
deliberately? b) accidentally?
7. What are your favorite alternative GF products that you eat
instead of gluten products?
I was not expecting the results I received. I had thought that the
amount of gluten products that I eat in a week would be comparable to
the people I interviewed. I cheat more than all of the people I
interviewed combined. The results were as follows:
* 5% intentionally eat wheat 1-2 times each month.
* 95% never intentionally cheat.
* 10% of the intentional cheaters feel psychologically fine after
cheating.
* 90% of the intentional cheaters feel angry and guilty after
ingesting gluten.
* 90% feel angry, mad, guilty, and concerned for their health after
unintentionally eating gluten.
In comparing my results against my self survey, I found that I cheat
once a week, intentionally. Most everyone was tempted by the same
things, bread and sweet baked things.
I rarely eat hidden gluten because I read labels very carefully. As
with people in my survey, I do feel some guilt after eating gluten
because: the after-effects are not worth it; I physically cause harm
to my system; and the symptoms can last up to three days. One study
conducted by Cincquetti, Micelli and Zoppi found that for children and
adolescents, eating a GF diet is very problematic due to the children
wanting to oppose the adult world. They try to find their individual
personalities through disobeying the diet. Also, young adolescents
cheat when out of their family environment.
Another study found a much higher incidence of cheating behavior than
I did. They used a self-report method with 100 patients ranging from
1 to 68 years in age. 50% of their patients would eat gluten on a
weekly basis.
The causes of my cheating behavior are due almost entirely to my
social environment, not wanting to bake or fix alternatives. If my
home environment has gluten in it I will be 100% more likely to cheat.
I am most tempted by dark beer, which has a high gluten content. I
think it is more difficult for a young person to take the extra care
to live GF, because it is much more time consuming versus quick and
cheap wheat alternatives. I also often tell myself after I cheat, it
is okay to eat a lot of gluten because in a way it is an all-or none
effect. Once you eat gluten, you have damaged the microvilli that
line your small intestine. Often I feel the effects of a minute
amount of gluten, and I rationalize eating large amounts due to this
all-or-nothing effect, although it is true that the more gluten you
eat the more your system reacts and for a longer period of time. For
most celiacs any amount of gluten is detrimental.
Goals: Setting personal goals needs to be a realistic procedure and
the goals need to be attainable if not necessarily a pleasant
experience. My long-term goal is to eventually decrease my gluten
intake to extinction. My short-term goal is to not eat any gluten
over the coming holidays. Living a GF life for myself is a very
difficult goal to attain, but I realize this is something I must
accomplish.
Treatment: I found many similar treatment plans for eating disorders,
addictive behaviors, as well as a model for assessing behavior that
seems to work for an individual with CD. From these treatment plans I
came up with the following behavior modification program:
1. Provide an information packet to the patient with in-depth
information on the disease, the causes of the disease and the
impact of cheating beyond the short-term effect that the patient
feels. Inform the patient of the harm caused to the small
intestine by prolonged exposure to gluten, and the cancers and
vitamin deficiencies associated with cheating.
2. Go through self-report measures with the patient by charting the
behavior, reporting on these factors: the GF and gluten foods
eaten, what time of day, where eaten, and with whom. Was it in
response to hunger or an emotional state; how did he or she feel
psychologically/physically after eating gluten? The patient should
keep this cheating journal for two weeks to a month, until able to
assess what situations are conducive to cheating and the reason for
the cheating behavior.
3. The patient will be able, with this journal knowledge, to have a
greater understanding of the behavior and proceed to goals. Goals
must be attainable and the patient must be willing to commit to
attaining them or failure may cause lowered self-esteem. Goals
should be directed toward a time schedule, to a final 100%
non-cheating behavior, and reinforced with a schedule that
accompanies each accomplished goal.
4. The family of the patient should be informed of the goals and the
repercussions of cheating on the body. Family and friends should
be accommodating to the new celiac patient by removing gluten
products in the house and bringing alternatives without gluten on
outings. It is beneficial if the family meals contain alternatives
for the celiac patient.
Outcome: I have successfully completed three weeks on a GF diet with
no cheating. I found these aspects of my treatment plan most
beneficial:
* Reading copious amounts of material about the health risks
associated with eating gluten was a major deterrent.
* I posted articles throughout my house so I could read them and
change my mind before consuming gluten.
* I try to keep no gluten products in my home.
* I realized through my own two-week journal that I was most prone
to cheating in a bakery, and on weekends I am always tempted by
beer.
I came up with a reinforcement schedule that seemed to be beneficial.
For the first five days, I was reinforced at the end of each day if I
had not eaten gluten; then I went a week without eating gluten; now I
am into the third week without. My reinforcements were meals from my
favorite restaurants and going to the movies.
I learned through this research project that attaining my goal needs
to be important. When I first sent out my questionnaires, I expected
similar finding to my high rate of cheating. As was shown earlier,
this was not my finding. Instead, I found that, aside from a few
occasional cheaters, most participants knew the consequences were not
worth the harm they inflicted on their bodies. Through both the
research and my questionnaire, I realized what I must do. And it
seems more feasible now that I know more of the consequences.
Letter from Maggie: "Thanks so much for printing my questionnaire in
the newsletter. Because of your help I received an additional 20
responses. My hypothesis was that I would find many more cheaters
like myself, and I found almost none. Since doing this research I
have stopped even occasional cheating, and I feel great."
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