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Notes from Small Group Discussions
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At our September meeting we broke up into small groups, with each
group discussing a different topic. Then we reconvened into one large
group and shared what each group had learned. Here are notes from
some of these groups:
Senior Celiacs, reported by Tom and Carolyn Sullivan
--------------
Seven members gathered for the Seniors small group discussion. One
member is a celiac diagnosed for 20 years who values the group because
she no longer has to go it alone. Another is a gentleman whose
daughter was diagnosed with dermatitis herpetiformis (DH) last year
who has been wondering about his years of bowel problems. (He was
advised, of course, to NOT go on the diet until he has a proven
diagnosis.) The rest included the usual lengthy do-it-yourself
struggles to get a diagnosis.
Most seniors have, over the years, adjusted their diet to not eat
foods that didn't agree with them, most of which just happened to
contain gluten as they now know. So their attitude toward the diet is
very straightforward: If it doesn't contain gluten and it doesn't
bother you, enjoy. If you don't like it or if you react to it, no
matter what it does or doesn't contain, don't eat it.
A follow-on to the diet discussion was the observation that we must
learn to separate celiac reactions from normal "human" reactions. Not
all reactions are celiac reactions caused by gluten. People can react
to other things at times.
One member indicated that for her, Fosomax works. [Fosomax is a
prescription drug that helps stop bone loss and, in some cases, can
even reverse bone loss to some extent.--ed.] After nine months of
use, a second bone density test showed improvement. This observation
also brought an agreement that one should maintain a file of their own
medical records. Always get a copy of every medical test or document
that deals with you and keep your own records. This allows you to
review your own records at your leisure, do your own analysis, and
develop your own line of questions, if necessary, for your doctors.
One individual did not ever use vinegar because they thought it had to
be grain based. They were assured that all apple cider vinegars, all
wine vinegars, and most balsamic vinegars (check the label) are
perfectly safe for celiacs. Also, Heinz distilled white vinegar comes
from corn and is also safe for celiacs. [Watch out for Heinz apple
cider FLAVORED vinegar, however. It was recently learned that this
particular vinegar is NOT gluten-free and should not be used by
celiacs.--ed]
Summertime Problems, reported by Mary Guerriero
-------------------
The members in this group talked about dining out. Marilyn Ponto
mentioned several celiac-friendly places, including the Belfry at
Stratford, and the Rainbow Restaurant, an Oriental restaurant on the
southeast corner of 9 Mile and Farmington which has celiac meals.
We also talked about traveling and what to take. Many group members
like to take Ener-G's 2-slice bread sample packs.
One member has had trouble with a rash on her head (so it was
interesting hearing Matt Lee's talk from the DH group about the rash
on his head). She thought it was from the shampoo having wheat in it.
[If so, this would probably be an additional sensitivity, beyond the
usual celiac gluten reaction--ed.]
The group also discussed problems with eating when on a date. The
group had a single man and two single women. All three felt it was
embarrassing to have to deal with special diet demands when eating out
on a date. We talked about using the restaurant card to help with
this, and maybe using this as a chance to lightly introduce the topic
of celiac disease.
Overall the group didn't have many special problems over the summer;
just the usual problems celiacs deal with all year round.
Parents of Celiac Children, reported by Kent Helmer
--------------------------
Most of the parents in this group had celiac children 3 years old or
older, who were thriving on the diet and showing few or no symptoms.
They were typically diagnosed at 1.5 to 2 years of age, though some
were diagnosed at an older age.
Most agreed that all first-degree family members of a celiac child
should be tested, though it seems that some of the fathers were
reluctant to undergo this testing.
The issue of a celiac child rebelling came up:
* Some parents found that their celiac child would cheat on the
diet when they were with friends.
* Celiac kids can get emotional about the things their friends are
having that they have to miss because of the diet.
* Snacks at athletic and school events can be a problem. One
solution is to pass out to the other parents a list of commonly
available GF items, so that the snacks provided might be
something your child can have. [A sample list is provided
elsewhere in this newsletter.--ed.] Also, it pays to have a
"backup" snack available in case the other parents forget about
the GF food list.
* When your child has a play date at a friend's house, be sure to
send a list of GF snacks to the friend's parents ahead of time.
One of the reasons that some young children are tempted to cheat is
that they often don't show obvious symptoms after eating gluten.
Unlike many adults, celiac children often don't have instant "bad
reactions" to small diet "slips".
The group decided to have a pot-luck pizza party for celiac children
and their families. [Details are elsewhere in this newsletter.]
Toni Richardson's Pizza Shell recipe was recommended. (Toni was a
long-time member of the group who passed away a few years ago, but her
memory lives on in her many wonderful GF recipes.) This recipe can be
found in the new patient packet that each member of TCCSSG got when
they joined the group. (Look for the sheet entitled, "Sandwich Buns &
Pizza Shells".) Also, it was posted on the Celiac Listserve a few
years ago so you can also find it there.<3>
New Celiacs, reported by Ella Lobbestael
-----------
There was a lot of discussion and usual questions. Ella shared a few
tips from the discussion:
* Celiacs should not share the same toaster with other family
members, due to cross-contamination from regular bread crumbs.
* Keep a good supply of the mixes from Bette Hagman's cookbooks in
your pantry, as this makes meal preparation a lot easier.
Hospitalization, reported by Ron De Cicco
---------------
[Note: Ron wrote a good article about his hospitalization for knee
replacement surgery, which can be found in the April 1997 issue of The
Sprue-nik Press.]
* Make sure the admitting physician marks on your chart that you
are a celiac.
* Remember that the hospital dietitian doesn't actually prepare
your food, so be careful of what you are served and question
anything that looks suspicious.
* Prepare your own food ahead of time, if you can, and store it in
the hospital or have someone bring it in to you each day.
* I.V.'s should be okay, but check pills and other medications.
[A Note from our Physician Advisor: When you are ill and need to take
a prescription, particularly if it is an antibiotic, you'll have to
strike a balance between trying to remain gluten-free (GF) and getting
well. If you are unable to determine if an antibiotic is GF, it is
probably better to go ahead and take it. The most immediate concern
is to kill off the bug that is making you sick. Any gluten
contamination, particularly in pills, is going to be slight anyway.
Antibiotics kill off the "good" bacteria in your digestive system, as
well as the "bad" bacteria. This tends to cause diarrhea, both in
celiacs and in non-celiacs. So if you have diarrhea while you are
taking an antibiotic, it does not necessarily mean that the antibiotic
has gluten; more than likely it is simply a normal side-effect that
you needn't be concerned about unless it is severe or persistent.
Having said that, I want to make it clear that for any long-term
prescription you should investigate and make sure it is GF. If it is
critical to start the medication right away, then do so; but also
investigate and make sure that for all subsequent refills you get a GF
alternative. It may be necessary to risk some slight, possible gluten
contamination for 10 days, as the lesser of two evils. It is quite
another thing to have gluten contamination in a medicine you must take
for weeks, months, or the rest of your life, something I definitely
would not advise.--Thomas Alexander, MD]
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