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How Do You Talk To Your Relatives About Celiac Disease?

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I've not been diagnosed yet so I haven't mentioned it to that many people, but I have found so far that the ones I have mentioned it to have this attitude that they couldn't maintain a gluten free diet.... Like it doesn't matter what the benefits of doing it or the consequences of not doing it would be, it's not worth the effort. Have others run into this? Even if I mention an increased risk on cancer they're like "everything gives you cancer these days" or something like that. :(

Also, what's a good way to bring it up and explain it?

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Don't say "increased risk". Say it WILL give you cancer, make you malnourished, and lead to a whole host of other problems. Essentially, eating gluten when you have celiac is slowly killing yourself. The diet can be overwhelming if you're not familiar with it. Tell them all the things you CAN eat: meat, potaoes, rice, fruits and vegetables. Offer to help with the cooking and suggest substitutions if an ingredient is not gluten-free. Also bring a couple dishes that you CAN eat to family gatherings.

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It's like climbing a huge mountain to convince anyone about this. When I discuss the facts, their eyes glaze over and I can tell it's all going in one ear and out the other. To most people, the idea of giving up wheat and all gluten containing items is like giving up their eyesight or some such. Since celiac disease and its symptoms are not immediately obvious in most cases, the attitude is "what you don't see doesn't exist." It's sort of like smokers....until they see evidence that their smoking has caused lung cancer, they won't take the possibility seriously....and even then many still won't believe it.

Even with my entire family possessing the celiac gene, and my two brothers were BOTH diagnosed with prostate cancer at 53, and various other celiac-suspicious symptoms, they don't believe they "have" it. Our mother has two celiac genes and even a whiff of gluten makes her violently sick. Everyone thinks that is the key to diagnosis...you have to be that sick. I've explained otherwise, that our mom's severe reaction is the exception not the rule, they still dismiss it all for themselves.

Ultimately, all you can do is give out the information and they will do as they wish with it. The only thing you can and must control is your own self. You do what you have to do and ignore the comments of others. It's your health, your body, your life. The main thing I've learned in my 58 years is that the only real thing you can control in life is yourself and your own decisions. You can't save the world, you can't save anyone unless they want to take in the information and be wise with it!

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About a year ago I learned that someone that someone knew in Connecticut had died from complications of celiac disease.....this person's boss knew this man from their golf club.

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"if you were as sick as I was you'd never eat gluten again"

"that stuff acts just like poison in me"

"sometimes I miss eating ______ but it's not worth feeling as bad as it makes me feel"

I think you should be gentle but firm. Don't sound like you're waffling to protect someone's feelings. I personally don't bring up cancer because it's something most people pretend doesn't exist unless it affects them personally.

I talk about gluten as if it were poison. I make jokes about "warding off the evil of gluten" with garlic or silver bullets or whatever. I grimace when someone offers me something inappropriate and laugh about it. But I never suggest by words or actions that this isn't something I don't take seriously.

I never agree to "just a taste". I never imply that I might have a slice of pizza once in a while. I ask ingredients of every single thing I am considering eating. I turn down any food that can't be verified.

CMCM is right. This is your life. Keep it under your control.

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I've not been diagnosed yet so I haven't mentioned it to that many people, but I have found so far that the ones I have mentioned it to have this attitude that they couldn't maintain a gluten free diet.... Like it doesn't matter what the benefits of doing it or the consequences of not doing it would be, it's not worth the effort. Have others run into this? Even if I mention an increased risk on cancer they're like "everything gives you cancer these days" or something like that. :(

Also, what's a good way to bring it up and explain it?

I've had a couple people say "I couldn't do it". I don't really react to that - they're telling you about their own personal weakness. Like if you said "I love hiking and climbing mountains," and they said "I could never sleep in a tent." It doesn't matter to your choices what they can and can't do. You still make the same choice you're going to make - to do what makes you happy and healthy. They don't have to understand, merely accept, and I've found that it often helps if I don't come across as though I'm looking for understanding, merely that I expect them to respect my decision.

I do try to explain it, for those who don't understand, as a simple choice, "I feel better in many ways when I don't eat gluten, so why would I choose to eat it and feel really crappy?"

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I'm not really concerned about how any of them feel about my dietary choices or whether they'll pressure me to eat something with gluten or anything like that... I'm just trying to find a way to explain to them that they may very well be gluten intolerant in a way that they'll take seriously without boring them with too much science (I've been known to be guilty of that) or being tactless when trying to get the point about how important it is across (I've been known to be guilty of that as well lol).

I also feel weird about calling up people I hardly ever talk to (I have a very large family) just to tell them that they may have a condition which they've probably never heard of and they should go get tested, and if they do have it, they won't be able to eat many of their favorite foods anymore. :blink: I can't not tell them... so many of them have symptoms.

Like I said, I don't care what they think of me, but if I sound like a religious nut it's unlikely that they'll this possibility seriously. :lol:

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I've not been diagnosed yet so I haven't mentioned it to that many people, but I have found so far that the ones I have mentioned it to have this attitude that they couldn't maintain a gluten free diet.... Like it doesn't matter what the benefits of doing it or the consequences of not doing it would be, it's not worth the effort. Have others run into this? Even if I mention an increased risk on cancer they're like "everything gives you cancer these days" or something like that. :(

Also, what's a good way to bring it up and explain it?

I just read Ravenwoodglass's message about her DD "I feel helpless", and this is the same problem. It's hard to make people understand.

My one brother did see that he has symptoms and had the blood tests, which were negative. His doc, bless him, said that the test was unreliable and to try gluten free. Brother said it's cleared up most of his symptoms BUT I'm not sure he's really strict, like he'll scrape off breading...yuk! I haven't said anything because it's only been about 3-4 months. After a few more months I'll send him some articles and info.

My sister, an RN, is refusing the test, but says she will "soon" but says she can't live without gluten. It will ruin her life, says she. She even has Graves Disease. But her doc said she didn't need to be tested. I have articles from the U of Chicago that says that any first degree relative should be tested yearly, especially if they have other autoimmune diseases, like Graves.

My other brother, an MD, denies symptoms and refuses the test. I'm going to work on him soon.

So, even with medical degrees and backgrounds, some people still refuse to see reason.

Both my parents had blood tests, each had parents with stomach problems, one of whom had cancer. Of course, the tests were negative. My dad is trying to get my mom -who always had stomach problems plus arthritis and depression- to try gluten-free to see if it helps, but she won't.

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My sister, an RN, is refusing the test, but says she will "soon" but says she can't live without gluten. It will ruin her life, says she.

Maybe find an article about opioid peptides for her? Gluten can be literally addictive to people who are gluten intolerant.

So, even with medical degrees and backgrounds, some people still refuse to see reason.

I suppose people generally believe what they want to believe. I considered the possibility of food intolerances for myself and my son a few years ago (I had read a bit about how effective the Feingold diet is for people with ADD) and decided that if that was the problem, there was nothing I could do about it. It would be next to impossible to maintain a reasonable lifestyle while avoiding so many foods. It seemed like a totally impractical solution, and meds actually seemed like a healthier thing overall :o (once you factored in the level of stress that maintaining such a time, money, and effort consuming diet).

Even now I'll admit that my attitude isn't what it should be towards dairy... I'm not sure that I want to know if we're caisin intolerant. I simply cannot imagine a life without dairy (most of my protein comes from dairy). I am aware of why I think that way, and I'm sure I'll address it and change my attitude, but for now I'm just going to see where this gluten thing goes. I'm seeing a GI doctor on the 7th. I'll probably mention caisin as well... see what he says. I honestly don't even know how they test for that. I guess I've been a little selective in my research. lol

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I had the conversation with my siblings when I was diagnosed. I explained that they should be tested, and that the complications of Celiac Disease can kill people and it came close to killing me.

Neither of them has been tested. One was diagnosed this year with prostate cancer, the other has a history of other auto immune diseases.

I love them, but I cannot make them listen. I've accepted that and moved on. I watched my brother battle drug addiction after he returned from Vietnam over thirty years ago. Thankfully he beat it, but it took almost twenty years and he did it only once he hit rock bottom and realized what he was doing to himself. I learned from my experiences with him that people change when they're ready and able to change and you can't make someone listen.

I'll be there if they ever decide to take that step and get tested, but I don't press them on it. They've got the information if they ever decide to act on it. They're adults and it's their life. Life is too short for me to spend whatever time I have with them pushing them to do something they're not ready or able to do.

Violet

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I've had a couple people say "I couldn't do it". I don't really react to that - they're telling you about their own personal weakness.

You know, I remember saying something similar to someone who had celiac way before I ever had a problem with gluten. I didn't say it because I was so sure I couldn't do it. I said it as a way of expressing sympathy because I did think it must be very difficult. It's obviously a lousy way of expressing support, but that is what I was trying to do, and I think we ought to consider that people who say that are trying to express support for how tough it must be.

How about saying back, "I didn't think I could do it, either, but it's not as impossible as I thought, and I feel SO much better, it's actually totally worth it!"

It is really hard to express support for someone who has to go through something that we don't have to go through.

After all, didn't we ALL have doubts in the beginning that WE could do it??????!!!!!

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I just wanted to add to the great responses. I have had terrible trouble talking to my family about going gluten-free (and getting tested for Celiac Disease). I have basically ruined my relationship with my father. I am so worried about them and their health (like my sister, who is PREGNANT!!!) but they brush me off.

My uncle was diagnosed 7 years ago, but his doc told him "eat what you want as long as you don't get sick" so that is the family attitude now. They don't think they are sick. They can explain away every gluten-related symptom.

It makes me really angry. I even got into a bad argument with my sister and said that I wouldn't go see her or the baby unless she got tested. I didn't mean for it to come out that way, but it did, and I am really sorry for it. I am just so worried and frusterated with them!

I am trying really hard to let it go. I really am...I have a bad habit of caring too much (about my job, what people think about me, stuff like that) and this just rolls right into that. Anyway, just saying, I know how you feel....

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Yeah. People only hear what they want to hear and believe what they want to believe. I thought of ordering the enterolab tests for all of them, but I shouldn't be spending money on something like that... it would be worth it to me if I knew they'd "see the light" once they go their results, but unfortunately I don't believe such is the case. They'll cheat and conveniently forget to read ingredients or ask about ingredients if they've never fully committed themselves to a gluten free life, and that's not something I can do for them.

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...

I also feel weird about calling up people I hardly ever talk to (I have a very large family) just to tell them that they may have a condition which they've probably never heard of and they should go get tested, and if they do have it, they won't be able to eat many of their favorite foods anymore. :blink: I can't not tell them... so many of them have symptoms.

Like I said, I don't care what they think of me, but if I sound like a religious nut it's unlikely that they'll this possibility seriously. :lol:

Heh, I know the feeling. I've had a lot of conversations that were hard to start (though not related to celiac). I think the easiest way to handle them is to say it up front. The "So, I know this seems odd coming totally out of the blue, but I thought it was important I let you know about this inherited thing I found out about, and couldn't figure out some smooth way of doing it..." sort of thing. Focusing too much on their symptoms might suggest that you're trying to diagnose them, but just giving them information is something you can do - awkward as it may be to start.

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It is very hard to explain things to people who are set in their ways and unwilling to hear it. I would probably not really indulge into discussing it. I would point out the general facts and give them some of the advice from our other posters, especially about how undiagnosed celiac can cause Cancer and other horrible medical conditions. I would stress that they need to keep their gluteny food and hands away from your food if they come and visit. Explain CC since that is an issue which causes many mystery glutenings.

In the end, you have to continue on looking at your health. As long as you are healthy and feeling better from being gluten free, that will say it all. Maybe some of your relatives saw you at your worst point....now they will see you so much better and will question how you healed...that would be one of the oppurtunitys to explain celiac. :)

Good Luck.

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My mom has diagnosed celiac disease, so I wasn't totally surprised to find out I have the gene, too, plus a gluten sensitivity gene from my father, for whatever that is worth (perhaps we ALL have at least one gluten sensitivity gene!!!). I have 3 siblings, none of whom wanted to bother testing themselves. Out of curiousity, my mom decided to do the Enterolab gene test, and thru that we learned that she has TWO celiac genes....therefore, we immediately realized that each one of her children had to have at least one celiac gene.

Yet, my brothers and sister dismissed the whole thing, denying that they had any symptoms. Yet, BOTH my brothers were diagnosed with prostate cancer at 53, they both suffered from migraines and assorted other "associated" ailments. My sister, it turned out, also got "sick" from time to time. BUT NO.....no way they had celiac disease.

I discussed it with them till I was blue in the face. I gave them all copies of "Dangerous Grains".

Still not convinced.

You can't convince anyone of anything. They won't "hear" until they're ready, and some people are never ready.

That gluten has a hold on them! :o

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I am at my daughter's for Christmas and brought my own toaster/butter/jam (labelled with my name) etc didn't use her chopping boards.

She rolled her eyes and said "You are paranoid Mum, a crumb won't make you sick!!"

I told her my doctor wants all my children tested and she rolled her eyes again . I have another genetic (non-auto-immune) condition which she was tested for and was negative, she more or less said she had the other "stupid" test done and she doesn't have the condition so by inference no point in testing for Celiac as she wouldn't have that either

*Sigh*

She already has a skin condition labelled as lichen planus/auto-immune/similar to psoriasis and I am now suspicious that it is actually DH but she won't listen

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I personally like when people say that a gluten-free diet would be hard. And if they thought that was hard, they could never imagine a gluten-free, dairy-free, soy-free and potato-free diet.

What I hate most is if people say it would be easy to eat gluten-free. That actually infuriates me, and I have challenged one person to eat totally gluten-free for three weeks to see just how difficult it would be. She has not taken me up on that challenge. (Gee, I wonder why.)

Anyway, back to topic of relatives ...

I *wish* my aunt would have brought up that this was a genetic illness 10 years ago, but I'm not sure I would have listened at that time. When you have digestive problems for so long, you perceive them as "normal."

All you can do is tell them that you have it, that it's genetic and if they have some of the sympoms (list quite a few or print them out) that they should try going off gluten for 3 weeks to see if they feel better.

If they don't listen, then that's their choice and there is nothing you can do about it.

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When you have digestive problems for so long, you perceive them as "normal."

Yep, that was my problem. I didn't even know my problems weren't normal and or associated with stress/fatigue. I just assumed everyone had issues.

Thankfully someone cared enough to point it out and recommend trying the diet for a few weeks. Otherwise I'd still be very sick and depressed, instead of finally starting to (slowly...) recover. Amazing how that works.

Unfortunately, must of my family has never, and likely will never listen to anything I say, so the ones I suspect have problems will continue to suffer.

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Yeah. People only hear what they want to hear and believe what they want to believe. I thought of ordering the enterolab tests for all of them, but I shouldn't be spending money on something like that... it would be worth it to me if I knew they'd "see the light" once they go their results, but unfortunately I don't believe such is the case. They'll cheat and conveniently forget to read ingredients or ask about ingredients if they've never fully committed themselves to a gluten free life, and that's not something I can do for them.

I convinced my father to get tested through enterolabs. He still is having a hard time believing gluten is his problem. I posted this elsewhere but his doctor told him he could eat pizza on friday night's if he wants. With prevailing attitudes like this only those who see the proverbial "light" have any chance.

Take the high ground whenever possible. You are among the fortunate enlightened ones now. You are no longer a victim. If you carry yourself this way they will want to know why.

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My family is unapproachable about the subjecy. My mom always has really bad stomach problems, my sister is always getting sick, my one cousin gets rashes, etc.

but they all just ignore it and tell me the disease is all in my head. "Suck it up!" or "You're just making yourself sicker by excluding allergins. You need to make your body get used to it."

*sigh* I really hate watching people make themselves sick because they are too lazy to look into one of the most important things that you SHOULD be paying attention to.

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I'm technically not celiac, though I'm quite convinced many of my relatives are. But so far, I've refrained from encouraging them to get tested or try the diet because I know they aren't ready to listen. I just talk about me and how good I feel on the diet, and how happy and relieved that I have found the answer. I think the better I feel and the healthier I become, the better example I will be, and that will help people become more receptive. Right now, it is all too abstract for my family to wrap their heads around. They are happy for me, but have yet to really see me benefit from the diet, though my mother-in-law has commented that already I "look better" and "more bright eyed and bushy tailed" And my mother is intrigued by my weight loss. Seeing is believing so to speak. But even then, not everyone will become receptive to the idea.

Feeling is believing too. My husband has been essentially forced to eat gluten-lite because of my diet. And I have talked to him at length about what I have read in the books about gluten sensitivity and celiac and how he fits the celiac profile. His reflux is better, and I know it is because he is eating less gluten. I told him that I thought he should try the diet for 2-3 weeks, and he actually agreed! But he said he wanted to wait until after the holidays. But I noticed he didn't take a roll at Christmas dinner. So he is obviously adjusting to the idea, and I am optimistic that we may soon have a truly gluten-free household. But there is no way that I could have convinced him all at once to go gluten free.

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Through all the reading I've done the last couple of years, I'm convinced that NO ONE.....celiac gene or no celiac gene...NO ONE should eat gluten. It's poison, the human body wasn't designed to deal with it, eating it creates continual stress on the body and weakens the immune system, leaving you susceptible to all sort of things....including cancer. Most if not all of the "diseases of western civilization" are related to overeating of gluten grains, starches and sugars.

Think about everyone you know. They probably have issues they don't even discuss, but you can see it everywhere if you look: indigestion, heartburn, bloating, serious digestive stuff/bathroom issues, migraines, the list is very long. Look at the various drugstore drugs for all these things, to say nothing of the prescription ones. And everyone accepts this as "normal" (or relatively so).

But suggest that the world not eat gluten? No way. No amount of "proof" would convince people of this. For a lot of us without hugely severe symptoms, and knowing we have the gene or having a firm diagnosis, it's STILL hard for many of us to toe the line with gluten. :(

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Hi, Celery is one of the top allergens, so it could be a reaction to celery. https://www.livestrong.com/article/207641-celery-allergy-symptoms/ By the way, I merged your two similar threads.  The forum rules don't allow duplicate threads,  They make things confusing.  But no problem, carry on!
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