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Georgia_guy

Telling Family?

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I am 25, live out on my own, and don't really have much to do with family other than the holiday dinners. I will one way or another be getting the celiac blood tests done in the next week or two (depending on work schedule), and I'm pretty sure it will show positive. How am I supposed to tell my family? There's family history of AI disorders, but no Dx celiac that I am aware of. Right now, other than y'all, there are only 3 people outside of medical professionals that know what's going on (and those 3 are more family than my blood family in all honesty).

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I just got dx, kind of out of the blue a few days ago. But I've have many conversations with my family over the last 3-4 weeks. I'm on the west coast and they are near Chicago so I don't have much contact either. This is my very very personal experience and advice.  It's worth what you pay for it<BG> We are in general a very close family. But they just don't get it. They tried to be supportive, but mostly it was more hurtful. What ever I tried to explain I was challenged. Where are you getting your info? Who told you that? Did the doctor say that? That is ridiculous.  I gave them research websites.

 

This was emotional enough for me in the beginning. The most support I have received has been from here and one friend. I personally would recommend saving conversations about cross contamination until you go visit. My family gets this - if it hurts you , don't eat it... but the idea that a crumb can do damage is simply not to be believed.

 

First degree family members should be tested. I made my case. I linked them to the University of Chicago. But I am certain none on them will do the testing. I told them I feel strongly about this. If you have questions, please ask me, but I will try not to bring this up again. I can't make them do it....

 

I'm probably not saying this well. I flooded my family with info. Burnout in 3 weeks. I wish I had got a handle on it first and then just told them I have C and can't eat xyz ever again. It is a lifetime disease. Non curable, non treatable, but manageable by strict diet control.

 

I'm sure others will come along with better advice.  Keep eating Gluten until your testing is done. And welcome!

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I'd recommend keeping low expectations. I told my sister first and ended up getting a nasty email from her the next day. But she's smart and after she got past the initial shock, went gluten-free herself. I still feel guilty because her reactions to cross contamination are much worse than mine, but we did just have a conversation recently about how we wonder how many negative experiences in our lives we could have avoided if we had known sooner. 

Other relatives, even the ones I think could benefit the most from going gluten-free, haven't even considered any sort of testing or changes to their diet. I did what I was supposed to and made them aware of the seriousness and that it can be hereditary. That really is all you can do. Of course, if they mention a health problem that I know can be related to gluten, I might bring it up again, but that is about it.

I think you can expect that some will get mad at you for being the bearer of bad news, but most will just go for denial and pretend that it is only your problem and couldn't possibly affect them. I don't recommend pressing the issue. They will have heard what you told them, but may not ever be able to face the possibility that they could have it too. I just make sure to mention here and there how much better my life is now that I'm gluten free and how I would never even consider going back.

I might also recommend being careful not to try too hard to convince them early on. I'm not saying not to tell them what celiac is or what your diagnosis means to them, but keep it simple. You're going to be all fired up early on - your brain filled with tons of new information, and all over the map emotionally, one day feeling great, another wondering why you don't feel great as you go through withdrawal symptoms or accidentally getting glutened. You'll want to share all that you've learned with those whom it could also help. But they aren't going to want to hear it. In a few months, you'll be more relaxed about it all and will simply be better equipped to have the difficult conversations, or be able to tell if someone doesn't want to have the conversation at all. 

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NatureChick - you said it so much better than I did! It's good to know I wasn't alone in the reaction. I was quite resentful, but decided I overreacted. I feel better and that is what is important. No one can absorb this much info that doesn't directly impact them!!

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Telling family is a tough one.  Even as the "matriarch" of the family, it's still difficult.   Especially when you have to travel to visit, and figure out how to eat in a different city.

 

When it came to the "telling", I did most of it in writing, with links provided to this site and others that explain Celiac and what living gluten free means.

Here's some of what I told my family and very close friends:

"As some of you know, I've been pretty sick the past year. It's taking a while to sort out exactly what's going on. Likely a "perfect storm" of a few different things.

One of them is Celiac Disease -- which means a huge change in our eating and food habits. Turns out that I am extremely sensitive to any wheat products, including exposure to flour "dust". (When I do something, I do it in a big ...way!) So, we have to be very careful about what is called cross-contamination in food handling.

It's a learning process, and requires a whole new way of thinking when it comes to food. At least it means we're eating at home more and eating out less, so we're eating more healthy foods. We're shocked at things that contain wheat, like TWIZZLERS, and lip balms. The boys are helping me a lot, and willing to try new and different things. I'm grateful for that.

If we turn down your invitation to dinner or to a restaurant, please don't take it personally. At this point we're still learning how to do this. And I know that none of you want an ambulance showing up at your house to cart me back to the hospital, again."

 

I received an outpouring of love back from that.  I added links at the end, "in case you'd like to learn more".
In follow up conversations, I've told my kids and grandkids that they should be tested, since there is a heredity/genetic factor involved. I included links for them about those facts.

 

When face-to-face and looking at the realities of what it means to share a meal with me, it gets a little touchier, but I find that honesty works best.  I take my own foods most place.  If travelling long distance, a local grocery is my first stop.

 

Remember that they do love you.  They may be confused by the disease, with the hype in the news, about the seriousness of it.

Some folks need time to adjust their thinking -- just like we do in the beginning.

 

 



 

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When I got my diagnosis I told my extended family of it.  They didn't believe it.  I sent it in writing, so they could look it over.  Then I felt I had done my part to warn them.

 

I tried to keep it light when we had our first family meal.  I warned them in advance by sending an e-mail message.  I said that I regretted not being able to eat their food, but would very much like to keep company with them.  With one family member I didn't feel good about sharing this with at the time.  They just sat me at a different table and I made cracks like, "Everything LOOKS good!  Everything smells good, and wrote to thank them for the wonderfully testing meal.  I asked my family if it had been wonderful-and it had.

 

Dee

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... With one family member I didn't feel good about sharing this with at the time. They just sat me at a different table and I made cracks like, "Everything LOOKS good! Everything smells good, and wrote to thank them for the wonderfully testing meal. I asked my family if it had been wonderful-and it had.

Dee

Dee, I'm not sure if I'm misreading something in my current brain dog and extreme fatigue (I had a bit more gluten this evening than I intended), but this part doesn't make sense.

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When I told my mother, and talked about cross-contamination, she was kind of dismissive at first and I started crying - telling her that this is really hard to do, but it's important and I really needed her support.  She called me a day or two later and said that she'd been reading up on it and she was sorry, that she now understood that it was serious.  I recommend maybe having literature available for your family, so they can see why it's important and why you need their help.

 

But it's nothing to be ashamed of, and if - after seeing the literature -- your family is still dismissive, I would just not eat around them and if necessary, take a break from them for a while as you get your health, and nerve, together.

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i was surprised to have to whip out the:  "i'm sorry if my *disease* is an inconvenience to *you*" line this weekend!  most of the time my family is really awesome about keeping me safe, but for some reason they were all about trying to put bread on my gluten-free grill  :(  

 

on the upside, though, i had a very informed conversation with one of our young moms who is switching her 3 y.o. to a gluten-free diet to see if it will help with his attention span.  suddenly, she spoke my language lolz :)  also, my future daughter in law, who has thyroid troubles, has been following a gluten-free diet and she came back from the dr on friday and said she had a good check up.  :)

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After I was diagnosed I told my family members when I saw them next which for me is also usually a holiday or some such thing as we all do not live in the same city.  They were actually happy for me to finally have an answer.  They had witnessed my deterioration over the many years and did not question it.  When we do get together and it involves food they usually have forgotten that I am gluten free and I just go about my food prep and don't mention it.  I would rather catch up on their lives than talk about food.  When my Mother visited from Hawaii last year, I was pleasantly surprised because she had obviously done her research without any prompting from me and was cooking gluten free for all of us in my Kitchen.  She would ok every ingredient with me a second time as she cooked.  She makes Awesome Food and it was great.  My Family is so headstrong in their ways that no amount of talking about how their issues might be connected to mine was even attempted.  

 

Hang tight and you will be fine.  The reactions you get will be what you get.  Don't expect much and you won't be disappointed  :P

 

Colleen

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I sent out an e-mail to my family just to let them know that I was diagnosed with Celiac disease, listed a few websites with information ( this being one of them) listed the tests that were needed, and let them know that if they had any questions to let me know and I would try to help them out as best I could. 

My parents I called, I had been having a lot of medical problems and was in and out of the hospital all the time and it was exciting to finally know what was wrong.  I then pushed my mother to get tested, she has thyroid issues, Sjogren's and Lupus.  She hemmed and hawed until my daughter was also diagnosed.  We are waiting for her labs to come back now.

With my friends, it seems the majority of them just think a diet change is all I need and will get instantly better.  They either get it or they don't.  My best friend who just lives a half a block from me understands the most, but then again she sees me almost everyday and needs to walk me home when I walk to her house since I don't have the energy.  She also inherited all my gluteny foods when "D" day arrived.

The people who matter are the ones that will understand.  They might not get it right away, but they will. It's a lot to take in especially if you have no clue what Celiac disease is, I didn't until the day of my diagnosis. I now know more than I want to lol

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