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Hi Everyone,
I asked the question: Is there any way I can convince my brother to be
tested? I received some great suggestions. Since they were all beneficial,
I cut and paste them all and will send them in parts. Thank you very much
to everyone!
Will you please, please, please pass any info. you find on to me? I am 21
years old and was just diagnosed in February. My younger brother, 18, is
portraying the EXACT same symptoms I had and also does not want to be
tested. He swears he does not have it and seems to be offended each time it
is mentioned to him. I also believe my older brother, 24, has it, however
he also has the same attitude as my younger brother. The older brother
swears he has an ulcer and acid reflux and that is it (funny, he's never
been tested for the ulcer... and the things he feels in his gut also mimick
what I felt). Anyways, when I asked my gastro. about what should be done
she stressed left and right that they should be tested b/c when a sibling
is the most likely family member to have the disease (since we do). I
appreciate you asking this question as I was going to do the same. =). Any
reply would be wonderful!
********************
If you've presented him w/ up-to-date information re. the connection
between celiac and intestinal problems and he's unconvinced, there's
probably not much else you can do. Adults make their own decisions, and
sometimes they're wrong. If you present the information, you've done all
you can do. If you repeatedly present it, he might start tuning you out
all together, perceiving you as a nag. Doesn't seem fair or right, but
IME that's the way it is.
********************
Gee - if he had that much removed it would be easy to histopathology done on
a lot of sections of gut. I hope they sent some to a pathologist for
examination.
It amazes me what some people will go through to avoid changing their
diet. He has a serious case of denial if he will let them perform
surgery & TAKE sections of his GI trace without first insisting that he
be tested for celiac disease. After all, the treatment for the is JUST
about food. There isn't much you can say to convince him to be tested.
Just don't listen to his future complaints until he is....If he's
convinced he doesn't have celiac he'll can prove it by being tested! End
of discussion... (My family doesn't want to be tested either.)
********************
My name is Gayanne O'Neil and I'm the study coordinator for the Celiac
Disease study currently being conducted here at the University of Utah.
I am a list serve subscriber and noticed your post regarding yourself
and children as Celiacs. We are currently looking for families who have
at least two or more family members who have been tested positive for
Celiac Disease by serum antibody testing or small bowel biopsy. I'm
wondering if your family fits our criteria and if you would be willing
to participate?
Let me give you a bit of information regarding the study and what being
a participant includes. The purpose of our study is to increase our
understanding of the genetic factors associated with Celiac. As a
participant, we ask you for a small blood sample (3-4tablespoons) as
well as completing a short health questionnaire. We would collect your
blood to be tested for serum antibodies(we do share results with
participants) and for genetic studies that will attempt to locate genes
for this condition. We may also be interested in sampling your first
degree relatives as well.
If you are not in the Utah area, we do send out blood kits which can be
taken to your local lab or physician. All lab and shipping costs are
covered by us and an Express Mail self-addressed, pre-paid envelope is
included in the kit so that you may just drop your samples into the mail to us.
Let me know if you have any further questions. I look forward to hearing
from you.
Thank you for your time,
Gayanne O'Neil
University of Utah
Celiac Study Coordinator
********************
When I read postings like yours I am thrown back into the chaotic emotional
tie ups of my own family - a family that refuses to acknowledge the presence
of celiac disease. In our case the symptoms are associated with all kinds
of unpleasantness: open skin sores, out of control weight fluctuation, bad
behavior, bad temper, emotional outbursts, etc. Since I figured out that it
is what I have, and what my mother suffered so terribly from, and what my
children (adult) also have, it has changed us radically to be gf. But my
numerous siblings persist in denying that it has any relevance to them,
despite the fact that they have joint replacements that do not work, all
kinds of teeth problems that do not get well-solved, mysterious persistent
headaches, fertility problems, etc., etc.
I have given up. I feel that it is such a profound business to re-orient
families in terms of personal health and familial patterns (ruts?), that it
must be a rare miracle when common sense prevails and real fellow feeling
allows insights and concerns to be shared.
Evidently, I am extremely pessimistic about a situation like the one you
describe. I do appreciate how terrible your pain is for your brother.
********************
What you can do is when he goes in again for a check up go with him......
ask the doctor what he thinks in front of him and maybe the doctor will
assist you. I asked my brother even though the only celiac so far in the
family is my son, and he went right away and tested. So far everyone is
negative. hope this helps a little.
********************
My question is........why did they have to take out part of his large bowel,
small bowel and small intestine? Seems to me the doctor would have had a
clue it could have been CD causing the problem. If so, then I would think
he would have relayed the info to your brother.
I would think your brother would want to have testing done as it is so easy.
And surely he doesn't want any more surgery so if he does have CD and gets
on the diet it would really benefit him. How old is he?
********************
Your brother should be tested! I'll bet everyone on this listserv says the
same.
********************
If others give you some good advice, could you please pass it on to the whole
list? I have a brother who has frequent bouts of irritable bowel and is very
thin. I've asked him to be tested, told him what the consequences of having
CD without the diet are...but I know he hasn't done any testing. If what
your brother has just been through isn't a wake-up call enough, I don't know
what would be! Could you speak to his dr. or surgeon about this? If a
doctor tells him it is necessary, maybe he would agree to be tested.
********************
I think he should be tested my sister and I have celiac disease, at the
csa conference the presented the incidence rates among 1st degree
relatives. the doctor stated siblings who have any symptoms should be
tested. I hope he agrees to it. I got my son tested by having have his
blood tested for University of MD-said it would help me and all other
celiacs Good luck, I hope your brother gets tested.
********************
Find someway to get this information to his doctor! Maybe his wife
can tell the doctor, if he has one- or you write his doctor a short letter
giving him this information. This situation calls for drastic action because
you love your brother.
********************
Tell him that in the general population, with NO SYMPTOMS 1 out of every
179 people tested positive for celiac! In everyone who visits a GI for ANY
reason, the stats are 1 in 30!! If he has a first degree relative with
celiac, his chances increase to 1 in 12, and second degree relatives are 1
in 11!! The longer he goes without being diagnosed, the higher his chances
of developing other autoimmune diseases, and if he has it and doesn't
follow the diet, he is 7 times more likely to die than everyone else! BUT
if he follows the diet, he will likely live 5 years longer!! HE HAS TO GET
TESTED!! If I can be of any further assistance, please let me know!
********************
You are so right but......denial runs high and it's so hard to get family
members to listen and act
********************
I was diagnosed coeliac one year ago at the age of 25. I had eaten gluten
all my life. I knew about coeliac disease and I also knew people who had it. I
never thought I had it myself. I found it out when a member of my family was
diagnosed. We all had the blood analysis done and I turned out to be coeliac,
too.
I thought one had to be sick or at least have symptoms. But one can have no
symptoms at all!
You can tell your brother that he can test his blood in order to make sure
that he has not coeliac disease.
Be aware that even if the blood analysis is negative, this doesn't exclude
coeliac disease. Coeliac disease could stay "hidden" for years. One should
repeat the test after some time.
My father was negative the first time and positive the second one, confirmed
by the biopsy. My brother was negative, but he was told to repeat the test
after 6 months.
********************
Call his doctor's office and remind them that CD runs in families. They will
not be able to tell you if he has been tested but hopefully they will then do
it. Anything you say will probably not change you brother's mind.
*********************
Yes, he HAS IT! Dr. Finer out of Texas has a kit that you can order (or
your brother) and he can be tested independent of his dr.
********************
I would suggest you to ask your questions at this other excellent site:
http://forums.delphi.com/celiac/messages/ There is very caring and
knowledgeable people there
********************
I have 4 sons and they are all celiacs. One is married and has 3 kids.
He has symptoms his wife has and his kids have. But there is a little
problem with his brain, which can't recognize the danger of this
condition. There is ignorance, and stupidity. Ignorance is temporary,
but stupidity is for ever and can not be cured. I made him read many
articles and he see my health problems and his younger brothers, but he
wouldn't get tested neither himself nor his kids. In order to keep peace
in a family, I do not discuss this matter with him anymore after 5 years
of trying. So be nice to your brother, or he will not speak to you
anymore. Wish you all my best!
********************
He is lucky that he didn't have cancer. Maybe the doctor should have checked
the intestine taken out for celiac disease.
This same thing happened to my grandmother.
********************
Your best bet is probably to present him with the facts:
As a child and sibling of celiacs, he has a 1 in 20 chance (or greater) of
having celiac disease.
Celiac disease is life threatening.
Testing for celiac testing is easy.
Celiac disease is treatable.
********************
I have the same problem in my family. I hope the list can help us, it is
awful to watch someone you love lose their health.
********************
Wow, that's a big one. Didn't they biopsy the organs that were removed?
That would have been easy and a simple solution to the problem.
********************
If your brother is an undiagnosed celiac and continues eating gluten his
chances of lymphoma rise. I thought if he knew this it might convince him to
be biopsied.
I was diagnosed with ulcerative colitits when I was 12 years old. At 32
they found (or I should say I found) I had celiac. In my opinion it was
celiac all along. Could be a similar situation with your brother (that this
has been celiac doing the damage).
Good luck
********************
If you find a way to convince your brother, can you please let me know what
it is. I've mentioned it to my sister for a year and a half and she still
hasn't had the test done.
********************
My sister is only going to get tested later because she just had a baby in
July - before that she said she wasn't worried; she also never thought I
had it and poohpoohed my being sick as if it were all in my head.
Does your brother have any children? Maybe you can tell him it's not just
for him but them also. Perhaps they may have the same problems as he and
end up with having surgery. He wouldn't want his children to go through
this would he? (Get his wife involved too if he has one.) Remind him that
CANCER is a possibility along with other autoimmune diseases. Also you
could offer to pay for it (Christmas present) - I paid $149 for the saliva
test through Dr. Fine's website www.enterolab.com (after the biopsies and
bloodwork were negative from my avoiding wheat for a while). My insurance
paid 70% - so if later he becomes glad you did it you can submit it to his
insurance. You could also print out a lot of stuff from the websites and
give it to him and just say something low key like, maybe if you have time
sometime - you could read this.....Keep trying - it will be worth it and I
think you are right that he does have celiac.
********************
Some people have their heads in the sand. I am the only celiac in our
family. My sister's kids are short and the youngest one has almost no enamel
on his teeth. She is a nurse herself and yet refuses to have any of her
children tested. It is frustrating.
Can you get anywhere with his doctor? If you can convince his doctor to test
him or at least talk to him that might help.
********************
Hi - I just can not understand why anyone would refuse
to be tested. Especially when the quality of life
would be so much better. In your brother's case, what
has caused the damage to his intestines? Probably
untreated celiac disease. What a shame. You can only
lead a horse to water.... Good Luck
********************
I was first diagnosed with celiac in 1951. Our relatives see us struggle
with this crazy diet and don't ever want to be deprived of the foods they
love. What they don't realize (and maybe because we don't verbalize it
enough) is how absolutely wonderful it feels to be healthy and not to have
our mail delivered to the bathroom. Give your brother a few of these
e-mails to read. Good luck!
********************
My brother didn't think he had celiac either, but he does. He was really
shocked; but I was not. He was tested for many things. I finally sent some
info with him when he went to the doctor. He is 73. Good luck to both of you.
********************
My parents have both had colon cancer, chemo and radiation. They won"t even
consider the possibility of celiac cuz they think the diet is too difficult.
Good luck!
Thank you again for all the consoling and helpful messages!
All the best,
Susan
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