<<Disclaimer: Verify this information before applying it to your situation.>>
Below are additional responses I received to the following abstract after
I posted my FIRST summary. (Note to List'ers: This will be my LAST summary
on this topic!):
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Scand J Caring Sci. 2003 Sep;17(3):301-7
Perceptions of health-related quality of life of men and women living with
coeliac disease.
Hallert C, Sandlund O, Broqvist M.
Coeliac Centre, Faculty of Health Sciences, Linkoping University,
Linkoping, Sweden.
Women with long-standing coeliac disease express poorer health-related
quality of life (HRQoL) than men do for unclear reasons. This led us to
explore differences in their understanding of HRQoL using a
phenomenographic approach. We interviewed 10 coeliac subjects (mean age 57
years, range 35-73) who had been on a gluten-free diet for 10 years and had
scored either high or low in the Short Form 36 Health Survey (SF-36)
General Health and Vitality scales. Three dimensions were revealed that
pertained to their perception of HRQoL: bodily sensations, social
consequences and coping strategies. Within these, the women experienced
more bowel symptoms than men did, despite keeping to a strict diet. This
item was the only one predicting the SF-36 scores. The women also described
more distress caused by the restrictions in daily life, closely related to
their controlling of food contents. The coeliac men took advantage of using
a problem-oriented coping approach while the women seeking an emotionally
oriented strategy showed less satisfaction with the outcome. We conclude
that the intriguing difference in HRQoL between coeliac men and women may
have some of its origin in the way living with the disorder is
conceptualized and coped with. The results imply that in the management of
coeliac patients, gender-related aspects need to be taken into account to
improve treatment outcome.
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I must say that 10 people is not revelant to make conclusions in research.
Mireille
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I wanted to comment on the article submitted to the Listserver, regarding
women vs. men having CD.
As a molecular biologist who has published several primary literature
articles in various scientific journals, I need to point out that a sample
population of TEN individuals is hardly statistically significant.
Therefore, the conclusions of that article bear absolutely no weight in my
mind, and I am absolutely amazed that such a "study" was even accepted for
publication. I can only question the scientific regard of this journal's
reviewers, who obviously failed to require that additional subjects be
added to the study in order to increase the total sample size. Such
failure is wholly irresponsible on their part.
Sincerely,
Teresa, Ph.D.
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Thanks for the great summary. All the comments were right on. Truth
is, most celiac men have a woman somewhere, somehow taking partial or
full responsibility for their diet with shopping, food prep, etc. But
most women are on.
I've been a nurse for 10 years & I totally agree that women's health
complaints are taken less seriously than men's are. When a young man
comes in with disease symptoms, the whole clinic rally's to assist him,
referrals are made, diagnostic tests ordered. A regular bon fire is
built around a sick young man. But when a young women comes in with the
same exact symptoms, at best she's offered condesending shoulder to cry
on & an Rx for antidepressants. At worst she's told it's her fault or
all in her head. I've seen this scenario over & over again.
Valerie in Tacoma
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I only saw this today so wasn't able to put my quarters worth in. (Have
been dealing with recent DX of invasive ductal carcinoma which of course is
taking precedence right now.) I do believe the responses are very good
and likely to be a large part of the 'cause' but I think there is more to
it so feel the need to add my thoughts. Lucky you!)
The following anecdotal personal information is offered not because I'm full
of myself but so you might better understand my reasoning here. I don't
believe I'm a 'push-over' but I AM a person who is sensitive (or maybe a
better word is intuitive to other's perceptions & I too don't like making a
spectacle of myself, as several others have inferred. "More flies with
honey than vinegar" has served me well. In the mid-seventies - late
eighties I held an upper management, executive position which was
ordinarily held by men in a predominatly male-oriented industry. Although
I was always able to 'hold my own', and even being younger than many of my
counterparts didn't stifle nor hinder me, - this ability NEVER translated
to MY personal life as a female (consumer, patient, wife, mother - no
matter what IT simply never translated to a personal level). I was then &
am now a female first, before all else. A male is a man first, before all
else (Mars & Venus was a good analogy!)
#1. If my husband or adult son speak to my needs - they ARE listened to -
whereas, when I or my adult daughter's do this, even if the exact words are
used, we are LESS likely to be listened to - both in social, eating, and
medical settings. It's sad, has improved but this is still just the way of
things. I'm ashamed to admit that even I find that I will question a female
medical professional's opinion over a male counterpart's opinion and
absolutely detest the fact that I do this, but I DO. It's just so ingrained
in our paternal society, having all been raised to believe that the male
'logical' mind-set is superior to the female 'emotional' mind-set,
regardless of overwhelming evidence or opinion to the contrary that at
least both mind-sets are of equal value.
#2. Mensas difficulties, hormonal changes and infertility problems often
arising from CD affect women differently in both very REAL physiological and
psychological ways. Women's bodies are 'assaulted' (for lack of a better
term) physically with pregnancy & child bearing taking a toll on the woman
[well-documented that the growing fetus' body actually robs anything from
anywhere it needs to cause proper fetal development and that this can be &
often done at the expense of the woman's body & our body systems].
#3. Women have a lot more "stuff" in their typically "smaller" abdominal
cavities than do men. With less room - bowel symptoms are more likely to be
felt as painful occurances. Additionally, men do not seem to have
difficulty passing any built up gas either, (LOL) whereas this isn't nearly
as acceptable for a woman even within close family settings. Gas,
unrelieved, all by itself can cause pain which may also add to the problems
expressed by women.
#4. Some of the common medical difficulties (well documented) associated
with CD are much more common in women than men, in general. IE:
osteoporosis, anemia, thyroid problems, etc. - so concerns about these may
play a bit of differing factor.
#5. When it comes to health matters in general - I further suspect women,
being the caretakers of their families (again, generally speaking) are
indeed typically a bit better informed than their husbands are - unless
their husband's happen to be in medically related fields. Because we
[women] have been ignored for so long in medical studies (thank God, this
is changing) we have had to be our own teachers about things to look for in
our own bodies as well & may very well also be better 'in-tuned' to even
slight nuances that might occur.
In the local CDF connections chapter for which I'm co-faciliator, WE
concentrate on what we CAN have, what we CAN do, and rarely have we had
anyone who seemed to be on a pity-pot of life with celiac. Men & women
alike in our group seem to handle their respective conditions well. The
men seem to complain a bit more about not being able to eat out until they
are taught how to safely do this - women seem to complain a bit more of
having to fix separate meals for their family until they are taught how to
streamline this. There are plenty of health problems to go around in this
group (one dear lady just had her 89th birthday & another her 80th - one
dear man just had his 84th birthday & another his 83rd) so we've heard the
whole gamut - but none seem to feel CD/DH is a disability or that they've
been dealt a poor hand - ALL are grateful to be diagnosed no matter how
long it took. All have adjusted well! All are thrilled with the huge
variety of gf goods available today, comparatively. It seems to be
extremely important what type of support group one belongs to (if they need
one) whether there is a *can-do* or *can't do* attitude that prevails,
regardless of what a Dr. might say to the contrary about the diet being so
impossible to stick to they all know they are the lucky ones - already
diagnosed.
This has been a nice diversion for me. I hope it hasn't taken too much of
your time. I doubt I'll ever catch up on the list serve so apologize for
the delay. Belated thanks for the article(s) of late.
Arletta
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