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3LittleBirds

Resources/References For Relatives With Lack Of Understanding?

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Just curious if anyone has had experience with relatives who dismiss Celiac Disease.

I have two daughters - 4 and 2 - diagnosed with celiac disease about 3 months ago, after the 2-year old had significant symptoms (nausea, diarrhea, stomach pain, loss of weight, fatigue, etc) and was close to being hospitalized. Still upsets me thinking about her frail little body and not knowing how to make her better. :( We've made the house gluten-free, and they're doing great so far.

My in-laws refuse to acknowledge the significance of what my girls are dealing with. There have been comments (to our faces, who knows what they say behind our backs) like "they'll grow out of it", "it's not a disease", and "it could be worse, they could have a nut allergy (like my brother-in-law)". My wife visited recently, and there was some eye-rolling when she insisted that the griddle would have to be cleaned and a different spatula used when SIL was about to make a gluten-free grilled cheese for my daughter after making "regular" grilled cheese for her kids.

They just won't listen to us when we try to set them straight, we're just over-reactive parents. Anyone have advice/experience for dealing with this? I hate to think this will lead us to spend less time with them, as my girls love their cousins. We thought we might be able to leave our girls with them while we took a first-ever adults-only vacation since my oldest was born, but now I don't trust them. Thanks in advance for any thoughts.

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Oh man, I'm so sorry you hear you have to go through that!

I would say that first off...I think it's a good decision not to leave the kids with them. If they don't believe it's a problem, even if they follow the 'diet,' they're not likely to take all the precautions necessary.

I don't know if this would help, but have you asked why they don't believe the diagnosis? I wonder if it would help to connect it to something they HAVE heard of: diabetes. I was trying to explain it to a skeptic once with that and it seemed to get through. The fact that like diabetes, celiac disease is an auto-immune disease. Like diabetes, people with celiac disease are attacked by their own body. In diabetes, it's the pancreas. In celiacs, it's the cilia. And like diabetes, people with celiac will lose the function of the part that is attacked. Diabetics lose the ability to produce insulin. Celiacs lose the ability to digest food.

The only difference is that doctors don't know why people's body's attack the pancreas. Celiac is unique only in this: it's the only auto-immune disease where we know what makes the body attack itself. Gluten. Which is a darn good thing, considering that we can't make artificial cilia to replace the ones we lose. Not like we do with insulin.

Celiacs simply starve to death.

And with the same skeptic, here's what else I said. Why can you believe that a body can be sensitive enough to detect a few molecules of peanuts, but somehow NOT sensitive enough to do the same to gluten molecules? Heck, gluten molecules are even bigger!

All that said, I don't know if there's anything you can do, really. There are plenty of places you could print out what celiacs is, if they won't listen to you, and what it does, but if someone is determined not to think it's an issue, they are going to think this no matter what you do. You could talk until you are blue in the face.

We ran into this with my own in-laws, and decided that my children simply don't get to be at their house without their own food and dishes, and never for very long. It's sad, and I wish it were different, but I'm not putting my kids at risk because some of my family is stubborn and unwilling to accept facts that they don't like.

Good luck to you!!!

Shauna

Just curious if anyone has had experience with relatives who dismiss Celiac Disease.

I have two daughters - 4 and 2 - diagnosed with celiac disease about 3 months ago, after the 2-year old had significant symptoms (nausea, diarrhea, stomach pain, loss of weight, fatigue, etc) and was close to being hospitalized. Still upsets me thinking about her frail little body and not knowing how to make her better. :( We've made the house gluten-free, and they're doing great so far.

My in-laws refuse to acknowledge the significance of what my girls are dealing with. There have been comments (to our faces, who knows what they say behind our backs) like "they'll grow out of it", "it's not a disease", and "it could be worse, they could have a nut allergy (like my brother-in-law)". My wife visited recently, and there was some eye-rolling when she insisted that the griddle would have to be cleaned and a different spatula used when SIL was about to make a gluten-free grilled cheese for my daughter after making "regular" grilled cheese for her kids.

They just won't listen to us when we try to set them straight, we're just over-reactive parents. Anyone have advice/experience for dealing with this? I hate to think this will lead us to spend less time with them, as my girls love their cousins. We thought we might be able to leave our girls with them while we took a first-ever adults-only vacation since my oldest was born, but now I don't trust them. Thanks in advance for any thoughts.

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Do not trust them.

This is well worth repeating.

The only thing that will get them to take this more seriously is the constant reminder that their current attitudes and actions are noticed and deemed not trustworthy. Unfortunately some people just don't "get it" simply because they do not want to. And these same people will not take it seriously unless they repeatedly see just how seriously you take it. So it may mean staying away for a while or seriously limiting contact. If they care enough, they'll soon realize that they are jeopardizing relationships with their nonchalance and temper their initial impulse to roll those eyes. When that happens, be sure to praise them for their compassion to reinforce the "concession" they have supposedly made.

It takes a while. But it is imperative that you set very clear boundaries. They may not like it at first, but that's the only way you'll be able to eventually have a "normal" visit and not resent them in the long run.

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This is well worth repeating.

The only thing that will get them to take this more seriously is the constant reminder that their current attitudes and actions are noticed and deemed not trustworthy. Unfortunately some people just don't "get it" simply because they do not want to. And these same people will not take it seriously unless they repeatedly see just how seriously you take it. So it may mean staying away for a while or seriously limiting contact. If they care enough, they'll soon realize that they are jeopardizing relationships with their nonchalance and temper their initial impulse to roll those eyes. When that happens, be sure to praise them for their compassion to reinforce the "concession" they have supposedly made.

It takes a while. But it is imperative that you set very clear boundaries. They may not like it at first, but that's the only way you'll be able to eventually have a "normal" visit and not resent them in the long run.

I don't know your family - but I assume (hope) they are behaving this way because they don't really believe they are causing harm rather than they understand it is harmful and don't care. Maybe some of the educational materials from NIH might help or some other source that they have faith in. My uncle at first thought we were doing it as part of the gluten-free fad since we found out right after the book the gluten-free diet had just come out. When I talked to him and my aunt and explained about all the tests, how thin and weak she got, and about the damage to my daughter's stomach they were much kinder and more supportive. I used these words "and the biopsy showed her poor little tummy was all beat up..."

http://www.celiac.nih.gov/

has some pamphlets that are pretty clear.

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Someone already mentioned diabetes. That's actually a good example. Now that I've been diagnosed with diabetes and done alot of reading, it was quite suprizing to me how similar the process is in type 1 and 1.5(Latent Autoimmune Diabetes in Adults) diabetes and celiac disease. It was said earlier that there is no known caues for T1 but recently there have been many studies linking T1 and celiac disease. So much so that some endocrinologists are screening all T1s for celiac disease. There have been published recommendations to do so and some of the studies show(if I remember right) that nearly half have a problem with wheat. There are some other suspected culprits for triggering the immune attack in T1 but wheat's getting alot of attention.

As for literature to share, CSA(Celiac Sprue Association) also has a free starter packet that you can request to be mailed to anyone you please. http://www.csaceliacs.org/cgibin/store/store.cgiloc=35,0,0,0&ref=details&prodid=481 Sorry that link didn't fully work. When you go to the "store" click on the link for pamphlets and you'll see a starter packet listed for $0.00.

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