How Can I Convince My Family?

[ElizabethN]

I have been gluten free for nearly a year now and it has changed my life. The problem I am having now is that I definitely see signs of Celiac disease in my family and I can not seem to convince anyone that they might have it.

For starters, a deceased uncle was diagnosed with "wheat intolerance" as a child. He never followed the diet and was miserable, he passed away from stomach cancer a few years ago. My grandfather struggled with unidentified GI problems his entire life, also headaches, joint pain, etc. I think they both had celiac!! Additionaly other aunts and uncles have been diagnosed with Colitis, Crohn's, IBS- you name it, and despite all the medications they are on they are all still suffering.

With this family history and with the way a gluten-free diet has changed my life, I really wish the rest of my family would take this seriosuly but they all believe that because they don't have all of the 'classic' symptoms they couldn't possibly have the disease. I made a breakthrough with my brother a few months ago when he told me he has developed lactose intolerance and other "stomach problems" and he agreed to go in for a blood test. Well, it came back negative and so he is figuring case closed. I have tired to explain that doesn't necessarily mean he is out of the woods and in my opinion he should follow the diet anyways despite what the doctors told him.

Because I was never officially diagnosed, I guess they don't seem to think there is any chance they could have celiac disease or gluten intolerance. I am so frustrated because I am positive that I am not the only one in the family with this problem and they could all feel so much better if they just gave the gluten-free diet a chance. They saw how this diet saved my life, why aren't they willing to give it a try? Their attitude is- "good for you for feeling better, but I'm positive don't have the same thing."

What can I do to help them understand the importance of this when their doctors tell them otherwise?

[queenofhearts]

This is really a toughie. I'm officially diagnosed, & my sister has had health problems all her life that sure sound Celiac to me, but she's resisting being tested. One of my sons also shows some signs. He's 19 & doesn't want to hear about it. Sadly, I'm not sure there is anything one can do to convince someone who won't listen.

My thought is, not to carp on it, because that's almost always counter-productive. Maybe bring it up once in a while, but what I'm hoping is that when they see me getting healthier & healthier it will dawn on them that it's worth considering.

Leah

[Nancym]

Unfortunately there's nothing you can do. Many of us face the same situation with family members that are showing so many symptoms and suffering so needlessly. But when faced with it, most people would rather suffer years of horrible illness than change their diets.

[gfp]

It is unfortunately all to common a problem.

The best suggestion I can think of is most people shy away because its weird, minority disease ...etc. etc.

If you can get one of them to accompany you to a local support group then they might slowly come to realise its more common and the symptoms more diverse than they think.

[tarnalberry]

There's very little you can do constructively. Pounding them over the head will only piss them off. Living your life well - proof the the gluten-free diet has given you more energy and made you feel so much better as well as proof that it is hardly a burden at all - is the best message you can give them. Giving facts about it, only when absolutely appropriate (not slipping it in everytime the opportunity presents itself), can be ok, but at this point, their "celiac information centers" are poked and bruised, and it kinda sounds like they don't want to hear any more about it.

[ehrin]

My thought on this is how did you come to your diagnosis? I received my diagnosis because I was an advocate for my own health. I knew something was wrong and I insisted that something be done about it. I actually walked into my GI's office and said "if people felt like I feel, after I eat, they wouldn't eat." I have a feeling you probably did something similar. Now your family members may be quite content in the misery they are in. So be it. I have an uncle that certainly has food intolerances. I gave him a book to read and left it at that. He can be an advocate for his own health - I have enough problems of my own!

[ElizabethN]

My thought on this is how did you come to your diagnosis? I received my diagnosis because I was an advocate for my own health. I knew something was wrong and I insisted that something be done about it. I actually walked into my GI's office and said "if people felt like I feel, after I eat, they wouldn't eat." I have a feeling you probably did something similar. Now your family members may be quite content in the misery they are in. So be it. I have an uncle that certainly has food intolerances. I gave him a book to read and left it at that. He can be an advocate for his own health - I have enough problems of my own!

I was fairly proactive in finding a diagnosis. But I guess I just don't understand how you can't be. After years with no answers from doctors finding an answer to my health problems was the single greatest purpose in my life. And so I don't get how they could have an answer, and yet they choose to sit around and complain about how crappy they feel. Why would anyone choose this?

It is hard for me becuase I love my family and I hate the see them all so miserable when they don't have to be. I haven't really hit them over the head with it at all, I just mentioned it last Christmas and then recently found out no one really did anything about it. I tend to think a lot of it has to do wtih the fact that their doctors aren't concerned so they don't think they should be either.

At least my brother has told me he thinks he might try the diet after he graduates from college. Or, he could just be saying that so I leave him alone! Maybe I will try the book approach with him, and then let it rest until someday, hopefully, he comes to me...

[floridanative]

People in general don't like change. Maybe more than half the population has problems with emotional eating. Those people can not dream of giving up one food they love, much less many. My own brother lives on beer and pizza and he's 34 freakin' years old, 9 years my junior. I have accepted the fact that I may live to bury him. When he was little he had a horrible rash for years. Doctors gave Mother cream after cream for him and nothing worked. Of course, it looked just like DH and now he still gets it as an adult but not anything like when he was little. The chances of him not having Celiac with me and Mother having it AND him having that rash that looks/acts just like DH are pretty much nil in my opinion.

When I was diagnosed I took the advice of those on this site to send letters about Celiac and the importance of them getting tested as they were my relatives, therefore had a better chance of having it than general population. Mother and sister were tested - Mother has it, sister's bloodwork came back neg. but I think she has it and it manifests itself in her brain instead of the way it affects Mother and me. Mother had classic symptoms, I had anemia and some bloating. Sister is on Lexapro after her hair started falling out from lack of Seratonin in her brain. I think her son has Celiac but she won't get him tested and I stopped telling her to. If he turns out to have it and gets dx'd at 12 when it will be much harder for him to start the diet, that will be on her head, not mine. She clearly does not want to think about the possibility that he has it even though he is only 3 and has short stature, lactose intolerance (his dad has that so that's ok) and he has 11 cavaties in his baby teeth. My sister is very intelligent yet she can't admit this could be a problem. I don't have kids but could it may be that as a mother you'd feel guilty about giving your kids Celiac, so therefore you can't find out that you did? Just a thought I've had for a while now.

Take Tanalberry's advice - don't beat the issue to death or you'll wear out your welcome with your family members that don't want to hear it. Educate them by your own example of how your life has changed for the better - just by giving up gluten. Maybe you can help at least one person eventually. I sort of feel like at least I helped my Mother and we can trace her symptoms back 18 years pre dx.

[floridanative]

I thought of something else on this subject. Have any of you been to a family reunion with extended family members since your dx and if so, how did you broach the subject of Celiac. I don't want to bore everyone to tears about gluten but I'll have to eat my own food so it's not like the subject will not come up. I'd like to use this opportunity to educate the group, without shoving it down their throats. Should I take fact sheets from a medical Celiac site in case anyone cares to find out more? Is this too presumptuous of me? I was thinking I could take Dr. Green's book or Danna Korns book (dummies book) just in case anyone is interested in perusing them over the weekend. Even if none of them have Celiac (dh family, not mine) they could know someone who has been sick and no one has figured out why. There's always a chance that someone we tell about Celiac will help someone find out they have it so I want to take advantage of this situation without upsetting everyone. This group gets together every three years and 4 of them are my in-laws so they know all about gluten. There are probably 8 other adults attneding that have never heard of Celiac or gluten, except one uncle who we had to tell why we could not share a cabin with everyone else.

[queenofhearts]

Try giving them this info from the NIH-- a lot of people "believe" when it comes from a respected source as opposed to an unknown.

Open Original Shared Link

[floridanative]

Try giving them this info from the NIH-- a lot of people "believe" when it comes from a respected source as opposed to an unknown.

Open Original Shared Link

Well some in group don't actually trust the gov't so much......one got in trouble with IRS when some group convinced him that paying income tax is not a requirement and the IRS is an illegal organization. But you did give me a good idea. I'll print off some info from the University of Chicago Celiac site. It's simple enough for anyone to understand. Thanks!

[Nantzie]

My husband AND about half of his family have a lot of symptoms. My husband, his dad, his grandmother, his brother and some his brother's kids. I think that they're just scared of the food. And with my husband and his dad, being sick is equal to being weak (men...).

I've been experimenting with the food a lot at home and have found some things that work out really well. I'm hosting Christmas Eve this year and my goal is to have not only a gluten-free Christmas, but a really really good one. I've been experimenting with cookie recipes and things like that. I want to show the family that it really isn't that difficult.

Once they see how well you can eat while being gluten-free, I think maybe somebody will even just give the diet a shot just to see how they feel.

One of the things I've been thinking about doing is to send out a letter to all of my relatives, giving them information, my story, etc. Because when you're in a family environment, everyone is always waiting to see what everyone else says, and then just go along with whatever everyone else thinks. I'm hoping that if I address it on a one-on-one basis, they will make a decision based on what THEY think rather than what the rest of the family thinks. I haven't tried it yet, but I'm thinking about it.

A friend of one of my SIL's has a lot of the same problems I had pre-gluten-free, and asked me to email her with some information. I discovered that it's really difficult to put this into a few concise paragraphs. It's such an all-encompasing condition with such an easy fix. Seems a little shady unless you've been through it.

Sometimes I think they might be waiting to see if the "miracle cure" of going gluten-free sticks, or if I start feeling sick again. Or if I give up on it and try something else.

Nancy

[Aerin328]

But when faced with it, most people would rather suffer years of horrible illness than change their diets.

Aint that the sad truth! :/

[par18]

I have been gluten free for nearly a year now and it has changed my life. The problem I am having now is that I definitely see signs of Celiac disease in my family and I can not seem to convince anyone that they might have it.

For starters, a deceased uncle was diagnosed with "wheat intolerance" as a child. He never followed the diet and was miserable, he passed away from stomach cancer a few years ago. My grandfather struggled with unidentified GI problems his entire life, also headaches, joint pain, etc. I think they both had celiac!! Additionaly other aunts and uncles have been diagnosed with Colitis, Crohn's, IBS- you name it, and despite all the medications they are on they are all still suffering.

With this family history and with the way a gluten-free diet has changed my life, I really wish the rest of my family would take this seriosuly but they all believe that because they don't have all of the 'classic' symptoms they couldn't possibly have the disease. I made a breakthrough with my brother a few months ago when he told me he has developed lactose intolerance and other "stomach problems" and he agreed to go in for a blood test. Well, it came back negative and so he is figuring case closed. I have tired to explain that doesn't necessarily mean he is out of the woods and in my opinion he should follow the diet anyways despite what the doctors told him.

Because I was never officially diagnosed, I guess they don't seem to think there is any chance they could have celiac disease or gluten intolerance. I am so frustrated because I am positive that I am not the only one in the family with this problem and they could all feel so much better if they just gave the gluten-free diet a chance. They saw how this diet saved my life, why aren't they willing to give it a try? Their attitude is- "good for you for feeling better, but I'm positive don't have the same thing."

What can I do to help them understand the importance of this when their doctors tell them otherwise?

This is what I have noticed when talking to family or relatives about Celiac Disease. They mostly seem happy I am feeling ok but don't really care about the details. I think the biggest hurdle to getting someone to consider whether or not this may be the answer to their health is how it will fit into their lifestyle. For the most part it will never be Celiac because their lifestyle will not permit it. This includes getting a blood test just to see if the gene exists. They forget that even if they never develop the condition one of their children or grandchildren might. Most I am sure would gladly accept having IBS symptoms the rest of their life. Just be prepared to tell them you don't want to hear their complaints after the fact! Just kidding.

The thing I try to do more than anything else is set a good example on the diet. I am not tempted to cheat or try any food or drink I am not comfortable with. If that does not please them so be it. Good luck.

Tom

[GFBetsy]

My first thought was: Host a week-long family reunion. Tell everyone that you are going to plan all the meals, snacks, etc, and all they have to do is pitch in money to reimburse you. Then just plan all the meals gluten free. My family reunions do that, because 4 of my aunts have celiac. It's really not that hard to do, and no one feels deprived. If you can convince them to leave their own "snacks" at home, they may come out of the get-together realizing that they felt better while eating gluten free. (You'd probably have to send out a menu in advance so that they'd realize they aren't going to starve. And base the menu on "normal" meals (chili, soup, baked potatoes, spaghetti (Tinkinyada pasta), scrambled eggs, chef's salad, etc.) so they don't even have to REALIZE they are eating gluten free unless you tell them.)

[gfp]

Well some in group don't actually trust the gov't so much......one got in trouble with IRS when some group convinced him that paying income tax is not a requirement and the IRS is an illegal organization. But you did give me a good idea. I'll print off some info from the University of Chicago Celiac site. It's simple enough for anyone to understand. Thanks!

Everyone has personal triggers....

Keep hinting how its a bit suspicious that places like Italy test every child and 1:200 are found positive and the US administration (in common with most but you can omit that detail) seems to be ignoring this huge health issue. Don't try and tell them its for them, tell them its frustrating for you because maybe research is hidden, maybe the wheat farmers lobby is paying someone off.... ask them how you would find out.

People are much more receptive when they find out themselves. Some people more than others.

[floridanative]

Everyone has personal triggers....

Keep hinting how its a bit suspicious that places like Italy test every child and 1:200 are found positive and the US administration (in common with most but you can omit that detail) seems to be ignoring this huge health issue. Don't try and tell them its for them, tell them its frustrating for you because maybe research is hidden, maybe the wheat farmers lobby is paying someone off.... ask them how you would find out.

People are much more receptive when they find out themselves. Some people more than others.

gfp - You are a genius! Of course, that is an excellent idea for DH's family since at least one of them doesn't trust the government in the first place. And interestingly he works for Hunt's and therefore had heard of gluten and said it was in everything and how hard it must be for me to avoid it. Now I'm actually excited about the reunion. Maybe I can educate without being obnoxious and without them even knowing what I'm doing. Yea!