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jasonD2

Letter To My Family For Celiac Testing

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Can u guys be so kind as to give me your feedback on this letter? I want to encourage my family to get tested but the truth is they have no idea what I'm going thru or that i even have celiac. thanks SO much!

Dear_____ & _____,

Not sure if my mother mentioned this to you but I was recently diagnosed with Celiac Sprue. This diagnosis sheds a lot of light on the problems I've been experiencing for the past several years and now I know what I have to do to feel better..and I already am!

The reason why I'm writing is because this is a genetic condition and there is a strong possibility it runs in our family since I have one of the two genes. It may also very well explain why we lost ______ & ______ at such a young age. I've learned so much about this condition and have been working with a brilliant doctor who has helped me out a great deal.

The most important thing I learned is that anyone who has one or both of the genes is at an increased risk for developing the disease or already has it without even knowing; it is also more prominent in women and individuals with Eastern European ancestry. Another important thing to consider is that you don't necessarily have to have symptoms - it is now estimated that 30-50 million Americans are walking around with Celiac and don't even know it. Also symptoms aren't always confined to the digestive system..they can manifest themselves in a variety of ways.

In any case, I discussed this with my doctor and he feels all my blood relatives should get tested as a precaution. Ultimately, Its your decision but given the nature of my recent findings it might be in your best interest.

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Sure thing. I do this for a living.

Can u guys be so kind as to proof read this draft? I want to encourage my family to get tested but the truth is they have no idea what I'm going thru or that i even have celiac. thanks SO much!

Dear_____ & _____,

Not sure if my mother mentioned this to you but I was recently diagnosed with celiac sprue. [THIS IS NOT A PROPER NOUN, SO I MADE IT LOWER CASE.] This diagnosis sheds a lot of light on the problems I've been experiencing for the past several years and now I know what I have to do to feel better... and I already am! [i ADDED ANOTHER PERIOD AND A SPACE - ELLIPSES NEED THREE PERIOD MARKS]

The reason [i REMOVED "WHY" - NOT NEEDED] I'm writing is because celiac [CHANGED "THIS" TO "CELIAC"] is a genetic condition, [ADDED A COMMA] and there is a strong possibility it runs in our family since I have one of the two genes. It may also very well explain why we lost ______ & ______ at such a young age. I've learned so much about this condition and have been working with a brilliant doctor who has helped me [REMOVED "OUT"] a great deal.

The most important thing I have [ADDED "HAVE"] learned is that anyone who has one or both of the genes is at an increased risk for developing the disease, [ADDED A COMMA] or already has it without even knowing. It [CHANGED THE SEMI-COLON TO A PERIOD AND CAPITALIZED "IT"] is also more prominent in women and individuals with Eastern European ancestry. Another important thing to consider is that you don't necessarily have to have symptoms - it is now estimated that 30-50 million Americans are walking around with celiac [MADE "CELIAC" LOWER-CASE] and don't even know it. Also, [ADDED A COMMA] symptoms aren't always confined to the digestive system; [CHANGED THE ELLIPSES TO A SEMI-COLON] they can manifest themselves in a variety of ways.

In any case, I discussed this with my doctor and he feels all my blood relatives should get tested as a precaution. Ultimately, it's [CHANGED "Its" TO "it's"] your decision, [ADDED A COMMA] but given the nature of my recent findings it might be in your best interest.

Hope that helps!

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LOL- I wasn't really asking for a grammar/spell check since its a rough draft - i just wanted feedback on the content

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LOL- I wasn't really asking for a grammar/spell check since its a rough draft - i just wanted feedback on the content

Well, you did say proofread, which is... what I did. I usually charge people for that. ;)

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How much? I'll send u a check :)

Do u think the content & tone was ok? The people im writing to are stubborn & set in their ways - when i told my aunt theres a 50% chance i have celiac she said "so, theres a 50% chance u will die from something else"

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Oh, sigh. Your aunt sounds so lovely.

I think the tone and content are fine. Without knowing your folks, of course, I can't know how it will go over, but I will keep my fingers crossed for you.

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Hi JasonD2,

If you actually send it you are braver than I am. I've thought about sending at least an email out to my relatives but....... most of them are so stuck up ......... my uncle told my mom that she DID NOT have diabetes. None of us are allowed to be ill, we are just lazy, crazy, welfare cases, ect. regardless of the fact that we all went to college and have jobs.

So their health is their problem, not my frustration.

Let us know if you really send it and if anyone responds. It's kind of you to want to help them but IMO most people don't want to be helped if it includes something as tragic as giving up their favorite foods.

Take care

RA

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This is a part of the email I sent out. In the parenthesis I put in the names of some of my relatives and some imaginary relatives (no twin brothers or sisters):

However, as this is related to genetics, I am taking the advice of my doctor and informing you of your slightly increased risk. The probability of your also having or getting celiac is,

1 in 133: for general population (not related)

1 in 40: for second degree relative (nephews,nieces)

1 in 22: for primary relative (brother,sister,parents)

10%: for my long lost twin sister

70%: for my long lost identical twin brother

Actually the surprising thing is how high it is in the general population. Diagnosis consists of a blood test and if positive it is confirmed by a biopsy of the small intestine.

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I must commend you for loving your family so much that you want to spare them what you've gone through. I hope that they will respond favorably. I also hope that you will put YOUR well-being first no matter what. I bought 5 of my family members actual tests that cost over $100 each from Enterolab, and I bought one person a test that was $345 because it tested for dairy intolerances as well. 3 out of 6 took the test. Of the three, two had Celiac and one didn't, but of the two that did, both are still on the same diet as everyone else in the world, not a Celiac diet.

It's been a good lesson for me. Some people aren't interested in making drastic changes, though we've had to. I'm 64 and have had Celiac symptoms since age 8 though I wasn't aware during most of those years that Celiac was the cause of my distress.

Take good care of yourself. Be prepared for the days when you may be taking care of those in your family who also have Celiac. You'll be the expert! Welda

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This is a part of the email I sent out. In the parenthesis I put in the names of some of my relatives and some imaginary relatives (no twin brothers or sisters):

However, as this is related to genetics, I am taking the advice of my doctor and informing you of your slightly increased risk. The probability of your also having or getting celiac is,

1 in 133: for general population (not related)

1 in 40: for second degree relative (nephews,nieces)

1 in 22: for primary relative (brother,sister,parents)

10%: for my long lost twin sister

70%: for my long lost identical twin brother

Actually the surprising thing is how high it is in the general population. Diagnosis consists of a blood test and if positive it is confirmed by a biopsy of the small intestine.

Can you provide a reference for these numbers? I would love to share this with my family also, but had never seen those. Thanks.

By the way Jason, I thought your letter was great am considering doing something similar myself at some point.

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I also agonized over the wording for the letter (well, an e-mail) I sent to family members. I eventually decided to just give them the bare facts and then let them decide what to do for themselves. So I just said something like:

Hi,

I have been diagnosed with celiac disease, an auto-immune disorder. There is no cure or treatment for celiac disease, except to not eat anything containing gluten for the rest of my life. I'm writing to you because the doctors told me that it can run in families (here I left out the actual percentages, etc) and they all told me that my close relatives should get tested too.

I'm here if you need more information.

Thanks,

Me

I went with this type of message because it does not involve me telling anybody what to do. I'm passing on information that the doctors told me to pass on. That's it. If they want to know more, they'll check out the internet, ask their doctor or they'll ask me. But if they choose to do nothing with the info, or ignore it, then that's their choice. I just have to let them be aware of what's possible. I'm not in charge of making them pay attention.

The letter was received as expected. Those who were interested in their health called me, and they got tested. Those who did not want to hear about it ignored it. Those who think I'm a nut job, they told me I was a nut job!

And the beat goes on....

Hope that helps!

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I hope your letter goes better than the one I sent to my fiancee's family. Her family told her they would consider getting tested, but regardless of the results they weren't changing their lifestyle any. They are also some of the sickest people I know, and have a lot of health issues.

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