<<Disclaimer:  Verify this information before applying it to your situation.>>

The following is more data compiled by Leigh Hornick ([log in to unmask]):

4. Socializing: Birthday Parties, Halloween, Holiday, Extracurricular
Activities

When our son is invited to birthday parties I call ahead to ask the
parents what is being served for the meal and what is going in the treat
bags. Then I provide a GF alternative. So if they are having hotdogs, I
send GF hotdogs. You would be surprised at the number of parents who
have arranged these things to be GF for everyone, for example,
hamburgers instead of hotdogs, and leaving off the bun for our son. One
parents even sent GF cookies to school events just for our son.

I always called the parents when there was a Bday party and explained
the situation and asked if they would tell me the menu. Then I would
recreate the menu at home and take it to the home in advance of the
party so our daughter could just walk in with her gift at the time of
the party, like every other guest. When she was in 2nd, 3rd and to an
extent 4th grades the "being different" part was hard. I felt it
important for her to get on with the work of being a kid and not have to
worry about food and being different. I worked very hard in those years
to handle the food. She told me recently that different food at a party
would be fine with her and just to do whatever was easiest...or she has
wanted to participate in making the food at home. As far as handling
treat bags - and this works for Halloween and other "candy laden" events
- we have established a candy shelf at home where our daughter can
exchange non-GF candy for GF candy. The way this works is that I take
her shopping and let her choose a bag of GF gum, a bag of GF chocolate
candy, a bag of a "regular" GF candy bar and a type of GF lollipop. I
keep these on a shelf at home. When she was younger we did the
exchanging together but by the time she was in 3rd grade she made the
exchanges herself. I found it helped her morale to know the candy was
waiting at home so that the minute she came in from a party she could
make the exchanges and didn't have to wait for a trip to the store, even
though we didn't let her eat it all immediately! This is also the way we
handle Halloween, Christmas, etc. treats, although I always include
"seasonal" GF candies on her shelf. Also, at Halloween, I only give out
GF treats and I buy things she likes that are not on her shelf so that
she has a larger variety to exchange with when she gets home from trick
or treating.

For birthday parties I feed my kids at home before we go or bring and
acceptable snack or bring an equal substitute if I can arrange it.

My son was invited to a birthday party last weekend at a Water Park
where previously there was nothing he could eat. This year he said, "I'd
better have a good lunch [before going]."

Our son is an active boy who participates in Scouting, soccer, hockey,
swimming and church activities. I have always made a point of discussing
his diet with his coaches/leaders and when something was planned they
called to let me know so I could send an equivalent with our child. What
has worked best with us is that we are the volunteers for everything he
is involved in. I've been a leader in Scouting and whenever a camp or
outing is planned I can help plan meals that are GF or at least one for
which we can substitute GF food. Scouting has been very cooperative and
only one person ever made a negative comment about planning around his
diet. I have been involved in this for 5 years and have either been a
leader or camp cook.

I always have GF candy on hand at home to trade our daughter for
anything she might get in a loot bag or at a parade, etc.

5. Family and Friends

We have one set of friends and family that are completely comfortable
and helpful in dealing with this diet. They have bought GF cookbooks for
themselves or have cooked complete GF meals for us without any problem.
They call to check on specific ingredients with me before they make
something if they have any question about the Gf status of something. I
trust this set of people to take good care of my children if I have to
be gone. On the other hand, there are some friends/family who seem to be
overwhelmed by all that has happened to us or think that we should just
"deal with it" and not inconvenience them to much extent. Some of these
people can't keep even the broadest outlines of the diet straight and
will worry about giving the girls completely benign things like apples
or bananas. Other seem to think that we are overreacting when we insist
that bread crumbs in the margarine could be a problem. It takes a lot of
patience to deal with both of these kinds of people. I also can't trust
them with the children, which causes some hard feeling sometimes, since
some grandparents fit this category.

The best friends are those that ask what he can and can't have or who do
their own research and quietly ensure that he could eat whatever is
served (the mother in this family is an RN which helps). Unfortunately -
probably due to his kindergarten teacher's attitude - many just choose
to leave him out.

The neighborhood moms have been great and have asked for lists of snacks
he can eat while at their house and I have given them each a copy. He
usually snacks on popcorn, raisins, or tortilla chips. (He was allergic
to most fruits and vegetables which compounded the problem, but he seems
to be growing out of that now.)

I have either purchased extra copies of our GF shopping guide or made
copies of it and given it to family members we visit frequently and who
are interested in having it because they will use it! Also when our
daughter was first diagnosed, we talked with family and good friends
about Celiac and plied them with easily readable articles about it -
mainly from the archives of the St. John's discussion group. This took
things out of the realm of "the granddaughter/friend having this
complicated/we-can't-understand-this disease" to something that made
sense and that they could do something about.

6. Emotional Aspects of the Diagnosis of Celiac

As for emotional ups and downs we haven't had a lot of problems. A
couple of incidents where I should have called the parents to verify
plans for an event but didn't and our son was unable to eat what the
others did. Once he cried all the way home because he felt so left out.
THAT was my fault and I told him that too. I also told him that I
understood that he didn't want to have Celiac Disease but that
unfortunately he does and we just have to do a better job in living with
it. On the whole he accepts his dietary restrictions quite cheerfully.
We have made sure that he rarely goes without and generally always
provide him with a GF alternative. Once a kid in his class teased him
about his sandwiches and cookies in his lunch. He came home in tears. I
told him that I knew that his feelings were hurt. I pointed out that
other kids got teased too and we discussed examples. He discovered he
wasn't the only one singled out for something that was beyond his
control.

I think it is important for newly diagnosed people to understand that
they will feel grief and sorrow be it great or small. I've found myself,
on at least 2 occasions, standing in the grocery store nearly in tears
because of the frustration and realization that I can't just buy
anything off the shelf anymore. Almost everything is made from scratch,
no impromptu eating out or carry out. It made me appreciate that my son
has probably felt grief, too, but hasn't expressed it - in so many
words.

My son still gets upset but since one of his friends has brain cancer,
he has decided he is lucky. It's hard - especially the teasing that he
sometimes gets from children and some adults (the lunch ladies decided
that since his lunch looks different it was junk food). I had worked
very hard to provide a balanced and nutritious meal. He did not tell me
about this until the day they forced him to spend his "treat" money,
used to buy some of the homemade frozen treats that are GF, on a "taco"
which was in a wheat shell and thickened with flour. Our son threw up
all the way to the sitters and was sick for the next two days. The
school nurse took care of it and advised the school administration. I
find myself pointing out that in some cultures these grains are rarely
eaten and that he is not so "different". Another thing that helps is
that he started karate when he was three and this contributes a great
deal to his self esteem and self discipline and the instructors are
always available to him so that he has someone outside the family to
talk to.

A year has brought a lot of learning, educating and coping with the
difficult situation of adopted three year old twin girls who are
celiacs. Our household is Gluten Free..yep, I threw out everything we
ever ate and started from the beginning. My twelve year old biological
son has to eat the same Gluten Free stuff as everyone else. Yes he is
angry at times but he has seen the ill effect on the twins so he
understands. He has friends over to whom he explains that we are eating
a few different things than they might. So far the friends have wanted
to try the GF things.

At first it was rather troubling and I envied how other moms could buy
all kinds of easy, quick kid meals and pop them in the microwave. But I
now feel that my sons are eating so much healthier. Yes, I cook a lot
more because I want to use wholesome foods without a lot of additives.
The other thing is that there are so many other difficult conditions
that I actually feel lucky we're only dealing with a diet addition.

>From the time my daughter was little we've talked about warm fuzzy and
cold prickly feelings and that was very helpful when illness came into
her life, with all the lethargy, pain, tests, diagnosis, etc. Through
that process I taught her that she's in charge of what she thinks and
feels. This has provided us with a great way to talk about the loss and
grief that is ongoing with this diagnosis and I am amazed at how well
she copes, with such a positive attitude. My own emotional reaction was
also very difficult, ranging from grief that my daughter was going to
have to deal with this all her life to elation that the problem turned
out to have a solution that I could provide without drugs, surgery,
ongoing illness, etc. I also had times of being too controlling about
her food and became angry if she cheated. I guess because I was working
so hard to read labels, scour surfaces, bake GF food, and she'd sneak
non-GF crackers. That has changed with time as I lightened up and
realized if I carried on like that she was going to shut me out when she
slipped or was uncertain whether a food was GF. I don't believe in using
guilt to control behavior.

Joining the child on the diet makes them feel less alone. Support groups
make everyone feel less alone and weird. Making the food your kid has
access to, so tasty the other stuff doesn't matter.

Our child was diagnosed right around Valentine's Day. After the school
party she came home with a bag filled with candy she couldn't eat. The
following morning she awakened me at 6 AM and said, "Why were all those
children so mean that they gave me candy I can't even eat?" As I became
fully awake I listened to this incredible resentment and anger spilling
out of my usually gentle child. The anger turned to tears and anger as
she continued her verbal outpouring about both the party and about the
diagnosis, although it wasn't said in so many words. Having been so
consumed with the diagnosis, the diet, the baking, etc. I had not really
given much thought to the emotional aspects. I tried to comfort her but
it had little result. I finally said, "You seem so angry. What shall we
do with all that anger?" - more reflecting my own thoughts than what
might be appropriate. She replied, "I want to take that candy and throw
it in the snow and stomp on it." I told her that would be fine and asked
if she wanted me to come outside with her. She didn't. I watched with my
own tears while she stomped that candy into the ground - but somehow it
was helpful to all of us. There has never been another incident as
"abrupt" as that one, but at that time, we became aware of, and
sensitive to, the feelings of isolation, sadness, resentment, grief and
other emotions that occasionally surface. At those times I mostly
listen. If it turns into a pity party, I may gently suggest those who
are worse off, but a listening ear helps her talk through/work through
her feelings.

I was very concerned about helping our daughter develop in a normal way,
given that she has a chronic illness. Since our focus has to be on food,
to an extent, I worried - and still worry - about eating disorders. I
worried about her being angry and about her feeling that life just
closed doors in her face because so much of our social lives revolve
around food. Because of all that, I checked the research for articles on
how people coped with CD and found nothing. Then someone suggested I
talk with a woman whose daughter has juvenile diabetes to see how she
handled it. The woman gave me articles on anger and talked with me about
coping as a family. One of her suggestions was that if the whole family
is supportive of the diet - however you want to interpret that - she
thinks the child with a chronic illness will handle the disease just
fine. After talking with her, my husband and I talked about how the
whole family might be "supportive". Among other things, we wondered
whether making the house a "Gluten Free Zone" would be helpful. We tried
out a couple of different ideas in those first few weeks, dinner being
the only GF meal, then dinner and breakfast and then we finally decided
that apart from bread and cereal, we would all eat a GF diet. It was not
easy at first because we all thought the taste of rice crust pizza and
pasta etc. was disgusting. But gradually we have gotten used to it. Our
daughter's infrequent but sincere remarks about how good it is to be
able to eat anything in our house has made us feel that this was the
right choice for our family. Eating GF at home puts us all on a level
playing field and food is simply a non-issue. If she goes out to a party
or a friend's home for dinner, our other child is allowed free choice
about where or what he would like to eat. On the whole, he is very
supportive of this arrangement. We have separate toasters for the bread
and separate butter/jam/honey containers but apart from that, we share.
I have found this is much easier for me as I don't have to worry about
making a mistake with food or contamination issues.

On emotions: there is not a lot you can do. Unfortunately the child
learns early that people Do Not Get It! Nor do they want to. They get
tough from an early age. Though they seem to shine it off, they do hurt
deep inside. I always try to say I'm sorry and on the way home get the
child a treat of some kind - special popsicle, ice cream french fries,
whatever might be rare and special. Follow up with the parents or
teachers and let them know how left out the child feels. Turn it on
them, "How do YOU think we could solve this problem?"

7. Eating Out

Eating out is very difficult. Both my husband and my families all live
nearby and we spend a lot of time together. They learned about Michael's
diet early on and never fail to accommodate him. He spends a lot of
overnights with one of his cousins and my sister-in-law, a nurse, has
become an expert on Celiac, as is my mother. I work full time and this
is great. Because our son was desperately ill when he was diagnosed, it
was a great incentive for them to learn the diet!

We eat out - just not often. We look over the menu carefully and ask
questions. My son has gone on field trips from school and been
successful in avoiding gluten. Most places schools go to have dealt with
alternative diets and we've been pleased with the response. Also, it
helps that my son knows what he can eat - or not - at places like
McDonald's or Wendys.

We mostly go to places that serve "breakfast" all day (eggs and
potatoes) or we go to places that specialize in "steak and potatoes". We
also will go to Asian restaurants where we know the owners/cooks. Oyster
sauce is almost always gluten free and some cooks prefer soy sauce
without wheat flour. Often we just pack a picnic.

A mom with a preschooler writes - we always bring his food with us to
the restaurant and since he is still a preschooler we usually don't get
dirty looks. If there is something on the menu he can eat we will make
sure there is no gluten in it and then he will eat that. Usually we just
tell the waitress that he has multiple food allergies and he has to eat
special foods and they have been very understanding so far.

Eating out is rare for us. Go at an off time, look at the options and
question the ingredients and procedures of an item that could possibly
be ordered. Perhaps they could even bake your pizza on foil.

I know a few foods at the fast food places that are OK. My celiac son
loves McD's french fries and vanilla shakes. Not the healthiest, but
McD's are everywhere and it helps. Then I consider restaurants that have
salad bars and baked potatoes and unmarinated meats.

We don't eat out all that often. When we do I try to call the restaurant
in advance and discuss my child's restrictions. They usually give me
some idea of what might be choices for her. I might also ask if they
mind if I bring in crackers or bread to supplement her meal because it
is against health Code regulations to bring food to a restaurant. Once
there I try to sit near her so we can discreetly discuss her options.
And while she is very compliant with the diet, on occasion she will
groan if something sounds especially good and she can't have it. The
only kind of restaurant we generally avoid is Italian. She love Italian
food but there tends to be little choice there.

8. Overnight Camp

Our son went away to camp for 2 weeks this summer. He had a WONDERFUL
time. I made sure the camp owners knew about his diet and they had, had
GF kids before so it wasn't a big issue. They told us what to bring
(pasta, cereal, and to label everything) When we got there they went
over all our food with us and made sure that he could or could not have
some things they already had. This was a working farm. Turns out, when
he got there, there was a diagnosed Celiac girl there too, and they
shared their food. She was the first GF peer he had and it was great for
both of them.

Our preschooler went to summer day camp. She had no accidents. I gave
the owner, the counselors a sheet where I wrote what gluten intolerance
means and what could happen if she eats gluten and that I am preparing
her food myself. I got the menu from camp and our daughter had the same
food: chicken nuggets, french fries, cookie, fresh fruits and juice -
just the GF version! I provided the ice pops and snacks like potato
chips...she had a fantastic summer, no problems and we are looking
forward to next year.

We have sent our daughter to overnight camp with all of her own food and
her own microwave.

Our daughter has gone to two, one week sessions at the Concordia
Language Camps in Minnesota. We worked with the staff to develop her
menu, we sent GF foods where needed and she had two absolutely glorious
experiences. The second year one of her counselors also had Celiac.
Unfortunately the counselor interpreted the diet a bit more loosely than
we do, but it didn't impact what our daughter ate. That experience in
itself was a learning experience for our daughter, though.

9. Traveling

Traveling is the most difficult. We spend most of our holiday times
camping, a choice we made because we love the outdoors but also because
it is easier to accommodate the GF diet. This summer we stayed in hotels
for a weekend. We packed a cooler full of food and our portable barbecue
and stopped at parks to cook our lunches and suppers. We had breakfast
at McDonalds. We took rice cakes, rice crackers, GF potato chips, GF hot
dogs, frozen hamburger patties, GF bread, Kool-Aid and juice, home made
GF cookies, stuff for sandwiches, apples, carrot and celery sticks and
cheese. We had more food than clothes!!

We take GF pretzels, fruit and veggies in baggies, jerky meats, potato
chips, cheese, GF brownies, GF cookies and health Valley rice crackers.
(Two responses combined into one).

If we go on a long trip somewhere, I plan everything. Last week we
rented a cabin in the mountains. I planned the whole menu in advance and
tried to stick to it. I try to carry little packs of raisins and the
Well Plan cookie packets with me at all times so that if we do get
"stuck" somewhere we have something to tide us over.

We bought a large, flat Rubbermaid container with lid, at Walmart.
Before any trip we load up with GF: pretzels, crackers, cookies, (the
two packs of Ener-G bread) etc. the non-perishable dry stuff. We also
load a cooler with GF: chicken nuggets (homemade), steak slices, potato
salad - etc. etc. basically I take "fancy" GF food from home, knowing
that, that will all too soon run out and then we will get the "plain"
(carrot, celery, apple slices, McDonalds, etc.) food as the trip goes
on. We also usually post to the Celiac List on the Internet or dig
through info. we have saved about coops or restaurants or GF food stores
that are along our travel route. Bottom line for us, though, is that
traveling is hard. It's much easier to get somewhere with a good stove
and frig and stay put!

10. Miscellaneous Tips

I bought a Kitchen Aide mixer with a flour mill attachment so I could
grind my own flour. I can use rice, white beans, lentils, chickpeas,
etc.

Two things have been my saviors: Bette Hagman's Gluten Free Gourmet
series of cookbooks and the owner of a store (Nancy's Natural Foods in
Canby, Oregon) that specializes in GF Foods.

A small binder kept in the kitchen contains basic information and lists
of allowed and forbidden food. This is helpful if family is visiting and
want to check something. Also helpful for babysitters. Our daughter's
food is marked with her name or pink sticky dots, which is helpful for
sitters. She has her own separate containers of butter, jam and toaster.

I xerox the GF shopping guides onto paper with three holes. I stick
these in thin three ring binders because the guide doesn't fall apart as
easily. I put one in the house, one in the car - for convenience when
shopping or traveling - and give copies to several close and trusted
friends whose houses are daughter frequents. That way they don't have to
keep calling me to ask what she can eat. I write in huge words across
the front of the binder the expiration date so they know not to use it
beyond a certain point.

I always have food so we don't get caught out being hungry. We put food
in the glove compartment, my pocketbook, whereever just to make sure he
is never hungry.(Several people said this.)

Celiac children will be happier adults if they know how to cook and
accept that's part of their lives early on. They need to be given as
much responsibility for their diet as they can handle,(with support at
first) teaching them to read labels when appropriate; teaching them to
say "no, thanks" if they don't know if a food is safe.

To keep down the expense, serve as many whole foods as possible.

My husband and I agreed that we would do everything in our power to make
sure our son felt included and NOT different from other kids. This
translated into was lots of baking, volunteering and planning.

I do comparison shopping. I make charts of who sold what for what price.
I do a lot of mail order buying now. Miss Robens is cheaper for some
things and has a standard shipping fee. However, we like some of the
mixes from The GF Pantry better so we spend more on them. I do a lot of
baking from scratch.

Flexibility is the name of the game! We are continually adapting to
developmental stages, emotional phases, and circumstances. A good sense
of humor and asking, "OK, what is the silver lining in this situation?"
when things are not working out, has gotten us a long way!