<<Disclaimer: Verify this information before applying it to your situation.>>
Newsletter Roundup
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Compiled by Jim Lyles
We exchange newsletters with several other celiac groups. In this
article I will summarize some of what we've learned from our
newsletter swapping.
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| Information from _The Celiac ActionLine_ was removed, |
| since it already appears elsewhere in the archives. |
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: :
: Excerpts from _Gluten-free Friends_ :
: ----------------------------------- :
: Summer 1995 (Vol. 1, No. 2) R. Jean Powell, editor :
: Winter 1995 (Vol. 1, No. 4) Montana Celiac Society :
: 1019 So. Bozeman Ave. #3 :
: Bozeman, MT 59715 :
:........................................................:
Talking with a Medical Professional: First, learn all you can about
CD, DH, and the GF diet. Make sure you have accurate information, and
be willing to admit you are still learning. Be polite and respect the
time pressures a professional works under. State facts, questions,
and your purpose clearly; anger, hostility, or a "pity me" approach
will not gain a professional's respect. Show respect for their
professional knowledge even if they do not have much experience with
CD.
Dealing with Family and Friends: Family and friends often do not
understand how important it is to be very strict about the GF diet.
They may try to be helpful. However, you must do what is best for
you; whether it is convenient for everyone or not; and whether they
understand or not. If you eat "just a little" gluten one time, they
will be confused when you try to decline the next time. (They won't
know how you paid for your "politeness" the first time.) So BE
CONSISTENT. As family and friends begin to see what a difference the
GF diet makes, they tend to become more supportive.
I'm glad I had a biopsy because: "First of all, it gave me a definite
diagnosis from a medical source--pretty important when family members
think it's 'all in your head.' Second, it gives me a definite reason
to tell other family members that they and their offspring could be at
risk for CD. Third, it helps keep me on the GF diet because I know I
have it. Last but not least, medical personnel respect a diagnosis by
a confirmed biopsy by a GI specialist."--Lily Patten
A Frightful Tale: "I would like to introduce to you the wicked witch
Gliadin and her cat Blacktoes. They lurk in the woods behind Sprue
Village, a small community nestled in the valleys of Anywhere, USA,
Earth (and other places) where peculiar people who can't eat cookies
or gingerbread live. Gliadin, who is a luscious and tasty morsel,
tries with all her many beguiling wares to tempt Sprue Villagers,
evilly cackling when pizza and spaghetti make them writhe in pain!
Blacktoes leaves cookies and slices of Velveeta on doorsteps to entice
the children...and make them cry. Blacktoes is a bad cat. Gliadin is
a bad witch. They will be appearing throughout your life,
so--BEWARE!" --Jean Powell [I made some slight changes, based on
comments from Dorothy Vaughan, our dietitian advisor--ed.]
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: :
: Excerpts from the Houston Celiac-Sprue Support Group :
: ---------------------------------------------------- :
: newsletter: Jan./Feb. 1995 Janet Y. Rinehart, President :
: 11011 Chevy Chase :
: Houston, TX 77042-2606 :
:.............................................................:
The Incidence of Malignant Diseases and the survival rate in celiac
patients were compared with those in the Finnish population. The five
year survival rates of celiac patients did not differ from those in
the general population. At least 85% of the celiac patients adhered
strictly to the GF diet, which may explain the favorable outcome.<6>
The Development of Respiratory Problems should be regarded as a
potentially serious and life-threatening event in middle-aged celiac
patients. Lung abscess should be added to the list of respiratory
diseases associated with CD.<7>
Adenovirus 12 and CD: Dr. Steven M. Best of Hudson, Wisconsin has
examined research papers on Adenovirus 12 (Ad12) and CD. Some of the
studies suggest that CD can be triggered by Ad12. However, there is
conflicting evidence on this topic. In one study, researchers
concluded that persistent Ad12 infection is not involved in the
pathogenesis of adult or childhood CD. However, the study did not
exclude the possibility that an acute, remote Ad12 infection (which
does not integrate into host DNA) triggers the onset of CD.<8>
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: :
: Excerpts from the Westchester CS Support Group :
: ---------------------------------------------- :
: newsletter: Oct. 1995 Sue Goldstein :
: 9 Salem Place :
: White Plains, NY 10605 :
:...................................................:
A Passover Guide to Cosmetics and Medications is written by Rabbi
Gershon Bess and published by Kollel-Los Angeles. During Passover,
some people of Jewish faith refrain from using items which are
chometz, that is, which contain wheat, barley, rye, oats, or spelt.
So you see, Rabbi Bess' annual research is useful for celiacs too.
Last year's guide contained 25 pages of product names (in small type)
organized into categories, with the chometz items marked by an "*".
The 1996 guide will be ready in March. Write to Kollel - Los Angeles,
7466 Beverly Blvd. $204, Los Angeles, CA 90036. A donation is
suggested. (This information comes from Mary Courtney, via the CELIAC
e-mail list on the Internet.)
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