Who's Had A Successful Talk With Family About Celiac?

[Miriam3]

Hi all,

I've got a dilemma most of you seem to have had at some point... I've done really well on a Gluten-free Casein-free diet and although I don't want to be some preachy convert, I want to tell some of the family members I suspect have similar issues about what might help them.

Any hints on how to talk to people without intimidating them or turning them off?

I had a talk with my mother...not so successful. She is very spacey a lot of the time and it seemed she couldn't focus on how I talked about it. She kept changing the subject. She is also very against complaining to the doctor about anything unless you are critically ill. She does not want to consider the hassle of going on a special diet. Later she offered me a wheat thin.

I haven't gotten to talk to my sister yet-- she is often sick with the big D, fatigue, depression and migraines.

Also my heart is really going out to my little cousin. He reminds me so much of how I looked and felt when I was his age (12)-- a little heavy, irritable, sleepy eyes. Looks sickly and tired a lot of the time and is uncoordinated at sports. Has vicious food cravings. His mom is very doting on him and very into healthy food, so she may listen. She also may be hostile if she senses someone is trying to say her son is defective. She feels he is brilliant and is proud of his accomplishments in school.

Okay, long post. But I sure could use the help!!! Anything-- is it better to talk about it indirectly in terms of me, or suggest testing for them because this runs in families? How much to point out about symptoms I've observed or heard from them... etc... I realize you can't change people or con them into some diet they don't want. I just want to present it in a way that might open up their minds!

Miriam

[Ridgewalker]

Here is one possible way of presenting it... Use the phrase "genetic disorder." In my reading on this website, and others, Celiac Disease/gluten intolerance is referred to as a genetic disorder. This phrase is likely to catch someone's attention. It sounds more "medical" than just saying that it runs in families.

Tell them that when a genetic disorder is discovered in an individual, it's a good idea for other family members to be tested, say "especially if they are high risk." And then when you describe "high risk," start listing off symptoms that you've observed in your family members.

-Sarah

[EBsMom]

I've got a dilemma most of you seem to have had at some point... I've done really well on a Gluten-free Casein-free diet and although I don't want to be some preachy convert, I want to tell some of the family members I suspect have similar issues about what might help them.

I've had mixed luck with this. My in-laws are walking laundry lists of celiac symptoms, but they were HIGHLY defensive when I pointed that out and offered all manner of ridiculous excuses to explain why it couldn't possibly be true. Sigh. They even doubt that gluten intolerance is real....they keep saying "A little won't hurt." So I've given up with them, for now anyway.

My mom came to visit and she was interested in learning about celiac disease and the gluten-free diet - after all, it affects her favorite (and only) grandaughter! So she started reading all the books I had lying around - Dangerous Grains, Celiac Disease: A Hidden Epidemic, Living Gluten Free for Dummies, etc. Her eyes got wide as she read and we ended up having a lengthy conversation about the liklihood that she has a gluten problem (she has Graves dx, chronic reflux, anemia, and possible RA.) I think she took it better "in print" than she would have if I'd been the one to propose it to her. She's trying to adopt a gluten-free diet now (though making a lot of mistakes still.)

I think that if the info comes from a print source - an "expert" - that makes it easier to accept. For your cousin's child, perhaps you could loan her a book (celiac disease: A Hidden Epidemic is great!) You could tell her that "OMG, I was reading this and it reminded me so much of your child." Or if a book is too much, maybe an article that you could print from the internet. Good luck to you!

Rho

[mandasmom]

I've had mixed luck with this. My in-laws are walking laundry lists of celiac symptoms, but they were HIGHLY defensive when I pointed that out and offered all manner of ridiculous excuses to explain why it couldn't possibly be true. Sigh. They even doubt that gluten intolerance is real....they keep saying "A little won't hurt." So I've given up with them, for now anyway.

My mom came to visit and she was interested in learning about celiac disease and the gluten-free diet - after all, it affects her favorite (and only) grandaughter! So she started reading all the books I had lying around - Dangerous Grains, Celiac Disease: A Hidden Epidemic, Living Gluten Free for Dummies, etc. Her eyes got wide as she read and we ended up having a lengthy conversation about the liklihood that she has a gluten problem (she has Graves dx, chronic reflux, anemia, and possible RA.) I think she took it better "in print" than she would have if I'd been the one to propose it to her. She's trying to adopt a gluten-free diet now (though making a lot of mistakes still.)

I think that if the info comes from a print source - an "expert" - that makes it easier to accept. For your cousin's child, perhaps you could loan her a book (celiac disease: A Hidden Epidemic is great!) You could tell her that "OMG, I was reading this and it reminded me so much of your child." Or if a book is too much, maybe an article that you could print from the internet. Good luck to you!

Rho

I think the only thing you can do is offer factual information regarding the genetics of Celiac Disease and offer to help find/locate appropriate medical care. but I have come to realize that the only persons behavior you can control is your own and that all the nagging in the world wont change the attitude of someone who doesnt wish to find answers. I personally have alerted all the family memebers that I believe are vulnerable and may have symptoms. What they choose to do with the information is up to them. Good luck!!

[Jestgar]

Be casual. Especially with your cousin. Tell his mom how great you feel now that you don't eat certain things and suggest she try it with her son. If it makes a difference, then go into all the genetics. You don't know for certain that he has the same issues you do anyway.

[marciab]

I'm still working on this one myself. My brother has nuerological problems so I talked to him about the progress I've made and sent him a copy of Bette Hagman's Gourmet recipe book. This way he could see all the foods he could eat. He likes to cook so this was a good angle with him.

And I also sent him some info off the web on celiac / gluten sensitivity that he could give to his doctor.

He hasn't eliminated gluten yet, but he was tested and we are waiting to get the results. His nurse wasn't very receptive to the idea, but I think we're past that hurdle now ...

After talking about this for almost 2 years now, most of my family and friends now know what celiac / gluten is. I hear from my sister everytime she finds an article on it.

I figure now that it is in the news more, sooner or later it will click with some of my other family members and they'll try it too ...

Marcia

[buffettbride]

We've had varying degrees of success talking with family members about it. We have a big family and there are many bases to cover. There's a great section in the book Kids with Celiac Disease by Danna Korn about the varying types of "getting it" and I really found a lot of truth to that. Some people just won't ever get it or seem interested or think it's a concern for them. gluten-free sounds easy and can be easy, but there are tricks we all learn to MAKE it easier on ourselves and loved ones.

For example, at first I didn't think we needed to keep a gluten-free house until that first glutening because of my son's oatmeal and learning that bread crumbs have wings that fly into other food everywhere. After the first 2 weeks, we made hour house gluten-free because managing both seemed just too hard with a child at the mercy of mom and dad to keep her well.

1. My parents - DD sees them quite a bit, especially over the summer. We thought we'd have the hardest time with them than anyone else but of all our family members, they went gung-ho on the gluten-free stuff and really understood CC. They have had DD over several times since dx and we've had NO trouble whatsoever.

2. Hubby's mom - They "get it" at the basic level. They understand no gluten, ever, and cook her gluten-free meals with no problem. They seem to understand CC but DD was glutened over the weekend there. I'd say it was 50% MILs fault and 50% DDs fault. She ate some gluten-touched grapes her little brother gave her. DD should know better than to take food from someone else, but MIL fed my son "real" toast thinking she would be able to prevent CC from happening. It was a lesson learned for all of us.

3. Hubby's dad - They tried to understand it I think, but don't really get that a little gluten is as bad as a lot of gluten. Our first dinner over there and they cooked things separately but then put the gluten-free and non-gluten-free pork roasts on the same cutting board. They somewhat looked at the gluten-free sauces we brought over with disgust and disdain. They do ask a lot of questions, though, and would want to do well. I see them trying to see if a little gluten would really make DD sick.

4. Hubby's extended family (we have a lot of family gatherings) - Some get it. Some don't. His 83 year old grandma would totally let DD eat a regular Oreo because "a little probably wouldn't hurt." Thank goodness DD wouldn't eat it anyway!! His uncle, though, was really great at the last gathering and totally sat down and asked about it. His nephew on his wife's side of the family has a severe peanut allergy so he really understood how careful one needed to be preparing food without gluten and all the CC risks.

Anyway, that's my family breakdown and experience with really getting it.

[Miriam3]

Thanks all Your experiences will definitely help me try to put this in a sensitive way. I would just love for one family member to be curious like your mom, Rho!!! My aunt is my best hope for that. I'll talk to her this weekend and at least get her the message it might be a good idea to get her son tested. Let y'all know how it goes!