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From:
Olive Kaiser <[log in to unmask]>
Reply To:
Olive Kaiser <[log in to unmask]>
Date:
Tue, 6 Apr 2004 07:36:39 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hi,

Thanks again for all who responded to my question.  Here are your replies.  One subscriber kindly sent an attachment of a nice brochure he made up and I will send it to who requested a summary or request the attachment now.

Here is my original post:

Celiac/gluten intolerance is a tricky subject to explain, and I wonder
if folks could share some of the techniques they found successful, (and
NOT successful) regarding informing relatives that they are genetically
"exposed" to this condition and conventional medical science recommends
that they be tested. Is there a magic form letter floating around that
works?

There is a lot of effort going into educating the general public on
CD/gluten intolerance, but how do individuals educate others "safely"?  We
have friends/relatives who are sick and some have been grateful for the
information, as we were.  Others have been actually vicious and even
laughed at our family member(s) who have been ill for years.  They think
that just because we told them about the condition, we are inferring
that they have it, and they will tell you before they know ANY facts that
they definitely do NOT have it.  We interact with some of these people
constantly, so they need to know our limitations, even though we don't
expect special treatment.  We can handle our own food, but can't eat
theirs.  It's scarey out there.

Here are the responses:

I sent a "form" letter with holiday cards in December to tell everyone
of my Aug 2003 CD diagnosis.  I explained the disease in one short
paragraph and told of the high incidence of CD in 1st and 2nd degree
family members.  I encouraged people to contact me with questions.  No
one did.

From the talks I have had with my mother, NO ONE in my family has been
tested yet.  This is especially hard for me, considering the fact that
my father had colon cancer 2 years ago, mother has early osteoporosis,
her mother had severe osteoporosis and stomach trouble, other grandma
had psoriasis, arthritis and depression, one sister has psoriasis,
depression, addictions, had 3 miscarriages and a severely disabled son,
other sister has fibromyalgia and other immune issues.  I cannot
convince any to be tested.  This is despite the fact that I nearly died
from CD.   I continue to have health issues from years of misdiagnosis
but am so much better than no one can even picture me being sick.  i am
the picture of "perfect" health now to outsiders.

i would love a magic way of getting family tested...

************************************
I am interested in this topic. So far my parents have been relieved that I have found out what is wrong, but I don't know if they are ready to go get tested themselves. They don't have health insurance and money is tight. I have heard that there is a DNA home test kit that you can order, and I am curious if it is inexpensive. I am about to move back to the same region where I am from and where most of my family is located, and so I might be in a position to tell people and measure their reactions. Wouldn't that make an interesting Fourth of July reunion!

There are a lot of things, come to think of it, that I would love to tell my family members to do or stop doing, because it would be better for them, but I am not going to waste my energy on that. As for my parents, they hear from me how much better I am feeling and that is all the satisfaction I need. My mom has remarked that she feels better when she eats "less bread."

They are, like all of us, responsible for their own health. After you provide reasonable information, they will either take it or they won't. However, I do feel that my extended family might be open-minded to learning about celiac because they are trying to figure out why my aunt, a fifty-year-old woman who has lived a fairly healthy life, developed a rare type of bone cancer requiring state of the art stem cell treatments.

I am not going to make any sort of "announcement," (I am recently diagnosed as of Feb.) I am just going to let it filter through the gossip corridors. My mom will tell one aunt, and then she will tell my cousins, and then it will get back to my dad's sisters, and so on. Then I will finally have a medical reason for passing up that dry, bland turkey stuffing....


************************************
It is often easiest to explain that CD is like a food allergy.

*************************************
I was wondering if you found any medicine that helps with
panic attacks.  I get them and have been on the diet for 7 years.  I believe
I get them because my relatives say the same things other people say,  "oh, I
don't have what you have, you must be weird, no one in the family has
cd but you."  They treat me horrible and act like I am a burden.  So I try to
stay away.  Hope you have a gread gf day.

**************************
My answer isn't going to be helpful because I just can't understand
the hostile family reactions. My family saw me nearly die from
untreated celiac. I told them it was genetic and the experts
recommend that all first degree relatives get tested. All of mine did
so almost immediately and with no fussing, with the result that my
father, despite no symptoms, discovered he has it. That's all there
was to it in my family.


**************************
I wrote a brochure for family etc. I hope that you find it useful.  (I'll send it separately upon request. Olive )

*************************

I'll be interested to hear about your responses regarding "alerting" family members.  My 19 month old daughter was recently diagnosed with Celiac.  The rest of us (husband, son, me) subsequently got tested.  We are all currently negative for Celiac, but we all carry one of the genetic markers.  So both sides of our families are at risk.
I sent a family email out, summarizing my daughter's results/condition, and stating facts regarding how genetic this thing is.  I tried to ask as tactfully as I could, that EVERYONE be tested.  I told them that it would help uncover how prevalent this really is in our family and that if my children ever wanted to have children, they would have some idea of what to expect.  Some of our family members jumped at the opportunity to help us.  Others never even responded to my request.  I really would like everyone to at least acknowledge what I am asking for.
I think it is true that people would rather take a pill for the rest of their lives for something, rather than change their diet.  Chickens!!!!

*************************************

Contact Friends of Celiac Disease Reseach for brochures.  They are written for non-celiacs in simple language and provide a broad overview of the possible symptoms.  They have recently been revised to show the new prevalence numbers.

Many assume that can't have celiac since their symptoms aren't like yours, but might recognize something of their own health problems in the broad picture of the condition.  The brochures are a great tool to initiate conversation on celiac....They read about all the problems it can cause and are then able to ask "what were your symptoms?"

Contact Friends at [log in to unmask]  You can find a copy of the old brochure/without the incidence numbers, at www.friendsofceliac.org  There is no charge for the brochures.

They also have a guide "Going Gluten-Free" for new celiacs. Friends hopes that doctors will give it out with to the newly diagnosed so they can leave the office with a the answers to the most basic questions and list of resources so they don't waste anymore time being sick.


*****************************

Indeed, it's scary out there! And inside families, too....
Denial runs deep in my family, so I haven't pressed the issue - they all know I have celiac disease (a first cousin has it too), yet no one else believes they could possibly have it (even those with suspicious symptoms). There's no one magic answer - just let people know you're there for them if they have questions. Health is an equisitely personal responsibility. We all make choices every day about what we put into our bodies (celiac or not). Some are thoughtful about their choices, some are not.

As for handling family gatherings - ack! I get far too nervous, and would never trust any food but my own. I set clear boundaries about what I was willing to do (make/bring my own food) and not do (eat theirs) at the very beginning. Luckily, we live far enough away from most relatives - LOL! But I know this can be a sticky issue.

Firm and gentle boundary setting is key. It's helped me to be honest and unapologetic about my needs. Emotions run high around food issues, so a neutral, matter-of-fact attitude works best, I find. And learn to say: No, thanks! with a smile...;-)

*********************************

Don't eat their food!!!  It will make you sick.

These people are ignorant and mean.  If you have a pamplet about celiac disease, you might give it to them.  Otherwise, just don't listen to what they say.  There are always these kind of people around.

******************************
Thanks everybody.  I guess there is no "magic" answer, but I'm getting a picture that one needs look for appropriate opportunities and  be prepared for emotional reactions that may moderate over time as the information sinks in.  I also think that if a person has been searching for answers for years, as many of us have, trying many remedies, it makes sense that others will discount this info as "another rabbit trail"  at first.

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