Help...family won't get tested

[Guest guest]

I would appreciate any help in what to say and how to convince my

brothers to get tested for Celiac Disease. I was diagnosed (via DH)in

January (on my birthday no less!)and have sent them information but it

goes on deaf ears.

My oldest did bring it up to his doctor but his doctor told him he

didn't want to " put you through all that trauma when you have no

symptoms " . UGH! He DOES have symptoms (actually they both do) and

all the doctor told him about was about having a biopsy. I told him

what I thought of his doctor. My other brother is just ignorant and

doesn't want to deal with anything (like he usually does with other

things in his life)and well...ok now that I said all that I realize

that they have to want to do it for themselves. It is so sad...I see

where they are headed (they are older than I am)probably because I am

doing so much better now and want that for them.

Thanks for letting me get that off my chest. If anyone does have any

advise for me I would appreciate it...

from South Florida

[Guest guest]

I was diagnosed in 1999. At first I kept begging

(nagging) my 4 adult children to get tested. Two of

them had some symptoms and 2 did not. The support

group I belong to had free blood testing about 2 years

after I was diagnosed and I really was after my kids

to get tested. They wouldn't do it. Finally I

realized that they are adults, they know what I have

and that it is genetic, they must make the decision

for themselves. Period. I don't know about them, but

I am alot calmer since I made the decision not to nag

anymore. If things get bad for them, I hope they will

be tested.

Barbara in SoCal

__________________________________________________

[Guest guest]

All you can really do is present the information, if you can print

off all the symptoms, the blood tests required, and the long term

affects if un diagnosed. Now if they take the attitude that it is a

female thing, tell I am not female, and my doctor had me convinced I

was a hypocondriac. Now that I know, and have been GF for a year, I

have found I have osteopenia (brittle bones) and neurological

symptoms persist. I am 41 yr old male. Give him the blood test info

for his doctor, and tell them if the blood work is normal there is

no reason for a biopsy. The best you can do is try, but don't let it

get the best of you. Present all the info you can and then let it go.

Good luck!

Mike in MA

>

> I would appreciate any help in what to say and how to convince my

> brothers to get tested for Celiac Disease. I was diagnosed (via

DH)in

> January (on my birthday no less!)and have sent them information

but it

> goes on deaf ears.

>

> My oldest did bring it up to his doctor but his doctor told him he

> didn't want to " put you through all that trauma when you have no

> symptoms " . UGH! He DOES have symptoms (actually they both do) and

> all the doctor told him about was about having a biopsy. I told

him

> what I thought of his doctor. My other brother is just ignorant

and

> doesn't want to deal with anything (like he usually does with other

> things in his life)and well...ok now that I said all that I realize

> that they have to want to do it for themselves. It is so sad...I

see

> where they are headed (they are older than I am)probably because I

am

> doing so much better now and want that for them.

>

> Thanks for letting me get that off my chest. If anyone does have

any

> advise for me I would appreciate it...

>

> from South Florida

>

[Guest guest]

There is nothing you can do. They will get tested when and if they develop more serious symptoms. You've done your part just informing them of your diagnosis.

Take care of yourself at this point.

Denver Donna

Help...family won't get tested

I would appreciate any help in what to say and how to convince mybrothers to get tested for Celiac Disease. I was diagnosed (via DH)inJanuary (on my birthday no less!)and have sent them information but itgoes on deaf ears.My oldest did bring it up to his doctor but his doctor told him hedidn't want to "put you through all that trauma when you have nosymptoms". UGH! He DOES have symptoms (actually they both do) andall the doctor told him about was about having a biopsy. I told himwhat I thought of his doctor. My other brother is just ignorant anddoesn't want to deal with anything (like he usually does with otherthings in his life)and well...ok now that I said all that I realizethat they have to want to do it for themselves. It is so sad...I seewhere they are headed (they are older than I am)probably because I amdoing so much better now and want that for them.Thanks for letting me get that off my chest. If anyone does have anyadvise for me I would appreciate it... from South Florida

[Guest guest]

Urge your one brother to keep after his doctor to do the test. If that doctor knows that you have CD and won't test your brother, then your brother has to either educate that doctor or find a new one.

As far as your second brother, there is nothing you can do. I have a sister and two brothers (plus their children) who won't get tested. They have been given the information and yes, they do show signs. It's their life. I wish we could drag them to the doctors... but we can't.

If ANYONE finds out how we can... please let us know.Carol M HeppnerUpdated website: www.carolheppner.comNew Paper Arts Book: INKING by Carol Heppner (Sterling/Chapelle) 2006

[Guest guest]

Thank you all for the insights...however I did give my brother

everything and he says he gave it all to his doctor...thats when I

told him what I thought about his doctor!

However, I did tell ALL my family (recently and quite bluntly) that I

did what I could..I informed them...and it was up to them to decide if

there life was worth saving from an illness or disease down the road.

(yup, was quite upset on that day!) So I have kinda " let go " of

it...but thanks for letting me vent before...it just saddens me to see

someone suffer needlessly (in the future).

>

> Urge your one brother to keep after his doctor to do the test. If that

> doctor knows that you have CD and won't test your brother, then your

brother

> has to either educate that doctor or find a new one.

>

> As far as your second brother, there is nothing you can do. I have

a sister

> and two brothers (plus their children) who won't get tested. They

have been

> given the information and yes, they do show signs. It's their life.

I wish

> we could drag them to the doctors... but we can't.

>

> If ANYONE finds out how we can... please let us know.

>

> Carol M Heppner

> Updated website: www.carolheppner.com

> New Paper Arts Book: INKING by Carol Heppner (Sterling/Chapelle) 2006

>

[Guest guest]

Unfortunately, it is most likely one of those things they will have

to decide to do on their own. I would forward info every now and then

and just be there when they wake up and decide to get tested. I am

sure you probibly did this, but I would also share with them all the

complications CD can cause. Cancer esp. Cancer is a scarry word that

will usually grab people's attention since everyone has been touched

by it.>

> I would appreciate any help in what to say and how to convince my

> brothers to get tested for Celiac Disease. I was diagnosed (via DH)

in

> January (on my birthday no less!)and have sent them information but

it

> goes on deaf ears.

>

> My oldest did bring it up to his doctor but his doctor told him he

> didn't want to " put you through all that trauma when you have no

> symptoms " . UGH! He DOES have symptoms (actually they both do) and

> all the doctor told him about was about having a biopsy. I told him

> what I thought of his doctor. My other brother is just ignorant and

> doesn't want to deal with anything (like he usually does with other

> things in his life)and well...ok now that I said all that I realize

> that they have to want to do it for themselves. It is so sad...I

see

> where they are headed (they are older than I am)probably because I

am

> doing so much better now and want that for them.

>

> Thanks for letting me get that off my chest. If anyone does have

any

> advise for me I would appreciate it...

>

> from South Florida

>

[Guest guest]

I understand your pain! I can't get through to my family. They just don't understand that they could feel SO much better. Best wishes!-- Carol M HeppnerUpdated website:

www.carolheppner.comNew Paper Arts Book: INKING by Carol Heppner (Sterling/Chapelle) 2006

[Guest guest]

I ahd a similar experience. My sister had been ill for a couple years now - vomiting, GERD, etc. and nobody thought about celiac/gluten. Within hours of going off of it, her symptoms disappeared. She got tested and everything came back inconclusive - they didn't use a special lab or anything. My doctor diagnosed me after inconclusive tests based on the gene typing and symptoms.

And my parents are in complete denial. My Mom keeps saying how sorry she is that she married a man with celiac in his family (my Dad, from whom she is divorced) - they both have warning signs, as do both family histories! She also insists that my DD's temper is from DH's side. )

Keep taking care of yourself and know that you did the right thing by providing the info and letting them make an informed decision.

--Trudy "Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind." ~Dr. Theodor Seuss Geisel

-------------- Original message --------------

Thank you all for the insights...however I did give my brothereverything and he says he gave it all to his doctor...thats when Itold him what I thought about his doctor!However, I did tell ALL my family (recently and quite bluntly) that Idid what I could..I informed them...and it was up to them to decide ifthere life was worth saving from an illness or disease down the road.(yup, was quite upset on that day!) So I have kinda "let go" ofit...but thanks for letting me vent before...it just saddens me to seesomeone suffer needlessly (in the future).>> Urge your one brother to keep after his doctor to do the test. If that> doctor knows that you have CD and won't test your brother, then yourbrother> has to either educate that doctor or find a new one.> > As far as your second brother, there is nothing you can do. I havea sister> and two brothers (plus their children) who won't get tested. Theyhave been> given the information and yes, they do show signs. It's their life.I wish> we could drag them to the doctors... but we can't.> > If ANYONE finds out how we can... please let us know.> > Carol M Heppner> Updated website: www.carolheppner.com> New Paper Arts Book: INKING by Carol Heppner (Sterling/Chapelle) 2006>

[Guest guest]

There is ONE other idea that I have fantasized about.......... when they end up

in the

hospital with this or that, I plan to high tale it in to " visit " them and also

have a

chat with the nurse or doctor. )

I suspect this is the only way it will work with my one sister. Other autoimmune

issues,

vitamin deficiencies, chronic diarrhea, malabsorption syndrome, INCONCLUSIVE

biopsy, yet

her " wonderful " family practice doctor keeps telling her " she doesn't LOOK like

the

celiacs he knows " ; so she believes him. It sure is sad that it may have to go

that far

before she might get a real diagnosis........

Cheryl in MN

[Guest guest]

I'm sorry you're going through this with your brothers. I think the

majority of people trying to inform their family get similar reactions

or at least that was what I gathered when I shared about my dh's

family. My SIL stated the following:

" We are all adults and if by some dumb luck we have this gene or

disease I think we have been handling our lives pretty well. We

should already know what may cause us gas, to puke, have diarrhea or

some other symptom that is unpleasant. But I don't need to know where

it came from unless it is cancer, heart disease, lukemia, kidney

disease, or some other disease that might require a blood transfusion

or transplant. "

This was after 4 months of e-mails with links about CD, signs and

symptoms, medical literature stating the occurance in family, etc.

Obviously she never bothered to read anything we sent to her or she

would not have taken such offense to my telling her the gene came from

her brother.

The final insult was " It took you 3 years to figure out something was

wrong. Deal with it and help him deal with it and learn about it. "

I haven't spoken to her since and really have no intention of speaking

to her ever. I simple will no longer allow such negativity into my

life and allow it to ruin my day. It's easier to say so long to a

distant SIL than your own sibling, but my dh does not even go out of

his way to communicate with her either.

So, I've informed them, what they do with the information is not of my

concern. I've dealt with the poor ignorant responses and I will do no

more. It is unfortunate that in the US so many feel that doctors are

the ultimate authortiy and continue to feel sick. It has to be the

individuals commitment to themselves to feel better before thought

processes are changed. The thought has to change from a pill to fix

everything to diet can fix just about everything and a cure does not

always come in the form of a pill, but rather in lifestyle and food

quality.

I guess what it comes down to is many people just don't understand

what " genetic autoimmune disorder " really means or they don't want to

have it in fear of they will be blamed for passing it on. That is

pretty childish, I don't care where the gene comes from, I just want

those who have the gene to know what that means for their own health,

especially when my MIL has suffered from cronic diahreah all her adult

life and has lived on Immodium for 37 years. But you can't drag an

adult to the doctors and say this runs in our family, test her for it.

I can't even get a copy of her medical records from when they did

surgery on her intestines, we didn't know then about our son's CD and

I wonder if they tested for that at all -- probably not. I asked her

to request a copy to find out if they did test her -- and you know

that didn't go well.

We've had to just let it go. As hard as it is to see family suffer, I

can only affect my household and seamly complete strangers!

Take heart you are not the only one who wants to help their family and

find your words are falling on deaf ears or ignornant ears.

Rejoyce

VA

[Guest guest]

Just another thought on the family link. My hubby was diagnosed and started the diet on Jan 1st of this year (when everyone else starts to diet!) at age 50. He lived with going to the bathroom all the time and thought this was normal. He has so much more energy now and has gained almost 18 pounds- yes he was very gaunt! We were having dinner with MIL and FIL this past weekend and I told MIL that I thought Tom (FIL) has CD. She looked at me with alarm and asked "What should he do about it?" I said "nothing. Tom is 81 and he won't change his way of life and besides he would say he has lived a good life up to now so why change?" Anyhow, your story makes me think of his family.

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