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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How To Explain To Family?
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11 posts in this topic

So, I've only really told a handful of people that I'm gluten-free/possible Celiac. I *KNOW* that I have gluten problems (whether its an actual allergy? Or Celiac? I don't know). I've told my Mom, my brother and his wife, and a few of my In-Laws, a few people at work also know. Mostly because they've offered me food, etc... and I've had to turn it down.

I'm naturally a VERY open person. I can talk about anything with anyone (I'm usually the go-to person at work for stomach issues, pregnancy issues, breastfeeding issues, lol!). I just don't see the point with being obtuse. Anyway...

My father and his wife, they just don't get the food issues. They never understood why I breastfed my boys for longer than 2 months (because any benefit was in the first few days...). My stepmother doesn't really 'get' the whole food allergy thing. She doesn't understand why we don't get my son his allergen at all (even in the simplest form) - he's anaphylactic to dairy. It's all very frustrating, and I've got lots of stories of disbelief that would probably have you staring at the screen wondering how we even still speak to her.

My first consideration is simply stating that I've been diagnosed Celiac, along with my son (he's not officially diagnosed, but his ped definitely thinks he's got a serious gluten problem... I refuse to put him through testing because he would have to go back on gluten. My husband and I have decided if he wants to get tested, he can as an adult/teen, under his own decision). They have overlooked my symptoms my whole life (at a certain point, I simply stopped asking for help after not receiving any attention in the matter). I casually mentioned that my doctor had recommended I try a gluten-free diet to see if it helped me, and that's as far as I've gotten. It was over a month ago now. 99% of my symptoms have disappeared (including my debilitating leg pain).

My second consideration is telling the entire truth, but I know she's going to treat me awfully. That the whole thing is completely ridiculous. Even if I said I'd been diagnosed with a gluten allergy, well - look at how she reacts to my son's anaphylactic allergy!

My third consideration is blaming my son's autism, because I think she'd perhaps get that - but then she wouldn't understand why I'm also gluten-free... Oh well.

And, we used to go out to dinner fairly frequently with them. So, I just don't know. They really aren't that awful, they just don't get the food stuff.

Thanks for any help, I'm just at a loss! I don't like to lie (and I'm terrible at it sometimes,lol!), but I'm thinking it might be the best option...

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I'm sure many can relate. My own MIL is very confused with my son's diet and keeps saying she doesn't "get it." And here she hadn't even read what I sent her! A very simplified overview of celiac disease and the diet. Like I've read on another post, some of it has to do sometimes with a different generation.

If I were in your shoes, I'd leave it at what you've done. That your doctor put you on a gluten free diet (don't even say suggested) and that your son's pediatrician wants him to be gluten-free. If they're not getting the milk allergy, I seriously doubt they'll get their heads wrapped around this. You may have to say goodbye to eating out with them. Unless you can choose where to eat and make sure it's safe. And you'll have to be in charge of food for family get togethers (or bring your own for you and your son). And they won't get to have your son alone if food comes into play. Also, just a thought but concerning your son, why not mention how a Gluten-free Casein-free diet works with (some) autistic kids? It may help back up the diet.

Don't lie, just back it up with whatever the doctors told you (places the "blame" on them and maybe has better authoritiy?). They may never get it but it's up to you to keep your son - and yourself - safe and healthy.

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My third consideration is blaming my son's autism, because I think she'd perhaps get that - but then she wouldn't understand why I'm also gluten-free... Oh well.

In my job I hear parents blame a lot of activities on their kid's conditions. Some of the time the condition is to blame but more often than not parents have just found it to be an easy excuse. I'm not saying you do that, just that I hope you don't start. (My favorite example of this behavior is a woman telling me her 14 year old son didn't know what he was doing when he charged $27k on her credit card over the course of 8 months because he has ADD. She also told me she was a single mother on welfare.. No single mother on welfare has a credit limit like that, and a quick search through public records showed she was an executive at a well known business.)

Why do you have to explain anything to them? He's your son and you have the right to decide what he does/doesn't eat.

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Thanks.

Yeah, we're definitely not eating out anymore unless I pick the restaurant. And Thanksgiving is always at my house anymore, because the last time we ate Thanksgiving at their house, they left his butter out ALL NIGHT! It was like soup, and said it was fine. :angry:

So, now, I'm always cooking!

You're probably right about the autism link... she's obsessed with anything autism related! So, that might work ;)

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In my job I hear parents blame a lot of activities on their kid's conditions. Some of the time the condition is to blame but more often than not parents have just found it to be an easy excuse. I'm not saying you do that, just that I hope you don't start. (My favorite example of this behavior is a woman telling me her 14 year old son didn't know what he was doing when he charged $27k on her credit card over the course of 8 months because he has ADD. She also told me she was a single mother on welfare.. No single mother on welfare has a credit limit like that, and a quick search through public records showed she was an executive at a well known business.)

Why do you have to explain anything to them? He's your son and you have the right to decide what he does/doesn't eat.

I hate that... my son is very well-behaved (he's VERY high-functioning to the point that a lot of times we question the diagnosis, but he still stims quite a bit and some other stuff). I don't make a habit out of 'blaming' his autism. Most people don't know that he has a diagnosis til some of the behaviour stuff starts to come to a head, and then they're looking at us like what is wrong with this kid?? Then we might say something, but anyway... I digress!

This woman has a way of making me feel like I'm about 2 inches tall. She's my father's wife, and I'm very close to him (and while he can also do the same stuff, in general doesn't make me feel 2 inches tall). And while what she's actually saying that I'm a 'good mom', I've heard what she says behind my back (or from another room), and she has outwardly said things to my face that I'm making bad decisions about how I deal with food. It's more about protecting my son than anything else.

If I tell them we have a medical diagnosis of an actual disease (not an allergy), then I'm more likely to not be treated like I am nuts. KWIM? Otherwise, its all in my head (just like my son's actually dairy allergy - cause that's all in my head!). And I'm totally serious.

She's really a pretty nice woman, but just hard-headed, stubborn, and passive-aggressive, lol - I know that doesn't sound nice ;). I just don't like being treated like I'm a head case...

She is, however, all about treating Autism, and 'fixing' my son... She used to constantly send me articles about this or that. So, she might accept the diet as part of treatment... I just don't know. She doesn't get that he can't be 'fixed', that this is who he is. My Dad said she worries every day about how he'll progress, etc. (OK, he's doing phenomenally in school, he's very social, and academically is right on target and in some instances passing what a lot of kids his age do. His problems are mostly verbal).

Did any of that make sense?? LOL! I didn't sleep well last night! ;)

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If you really want to say anything more, I'd say "Good news, staying gluten free has made me feel so much better."

But the idea of not saying anything else is also a good one.

I've had coworkers not understand about cross contamination, as in, they'll ask "you can't even have a little?". (They ask in a nice way, because they are genuinely confused and want to understand.) I just say "nope, not even a little." If someone were to say "I don't understand, that doesn't make any sense," or "I don't believe you; you're just being paranoid,", I would simply respond with "It doesn't matter if you don't believe me or understand; I'm the one who has to be gluten free, all you have to do is respect that I get to decide what's best for my body." Of course, I do not in any way assume that anyone (family, close friends, anyone except my husband) would cook things that I could eat - it's not their condition to deal with, and the intricacies are rather a pain in the butt if you're not used to them (or don't have a pretty dedicated kitchen).

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I was diagnosed with Celiac as an infant and immediately placed on a grain-free and dairy free diet. I was fortunate to have a pediatrician diagnose it and I owe him my life since I suffered failure to thrive. My mother was extremely careful to not let me eat breat, grains or dairy but didn't put any effort into replacing the lost nutrients, so I my hand still show signs of rickets (Vitamin deficiency.) I ate alone at school, with the teachers afraid I'd sample food from other kid's lunchbox. Immune systems continually evolve and change. By age 7 or so I could tolerate milk, and later, I ate bread and anything. It went into "remission".

40 years later I started getting sick and was again diagnosed with Celiac. I'd been sick for almost a year. The GI doc asked if I was on a "weird diet" as a kid. I said yes. He said that my short stature and poor enamel on my teeth that I had Celiac, confirmed by biopsy. It's back, and it's not uncommon for this to happen. I've been gluten-free for four years. I lack the engery I had before it raised it's ugly head, but perhaps it's because now I'm in my 40's.

Here's the thing -the same mom who was so careful with my diet as a child now dismisses my problem. Two years ago she made a casserole with saltine crackers. I was so sick it took days to drive home when it usually took 9 hours. Here it is, holidays coming. They are starting to get it. Mom doesn't like that I have it, but I will go hungry rather than risk that holiday again. I'm safe in my home. I know which restaurants are safe and I'm a creative cook. The holidays are such a risk, with open houses and parties. Yes, that dish is gluten free, but it was prepared on a cutting board that just had bread on it. Holidays are so hard. Families sometimes just don't get it. I feel like I'm insulting people all the time. Well, here we are to get the word out. Glad this site is here.

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I was diagnosed with Celiac as an infant and immediately placed on a grain-free and dairy free diet. I was fortunate to have a pediatrician diagnose it and I owe him my life since I suffered failure to thrive. My mother was extremely careful to not let me eat breat, grains or dairy but didn't put any effort into replacing the lost nutrients, so I my hand still show signs of rickets (Vitamin deficiency.) I ate alone at school, with the teachers afraid I'd sample food from other kid's lunchbox. Immune systems continually evolve and change. By age 7 or so I could tolerate milk, and later, I ate bread and anything. It went into "remission".

40 years later I started getting sick and was again diagnosed with Celiac. I'd been sick for almost a year. The GI doc asked if I was on a "weird diet" as a kid. I said yes. He said that my short stature and poor enamel on my teeth that I had Celiac, confirmed by biopsy. It's back, and it's not uncommon for this to happen. I've been gluten-free for four years. I lack the engery I had before it raised it's ugly head, but perhaps it's because now I'm in my 40's.

Here's the thing -the same mom who was so careful with my diet as a child now dismisses my problem. Two years ago she made a casserole with saltine crackers. I was so sick it took days to drive home when it usually took 9 hours. Here it is, holidays coming. They are starting to get it. Mom doesn't like that I have it, but I will go hungry rather than risk that holiday again. I'm safe in my home. I know which restaurants are safe and I'm a creative cook. The holidays are such a risk, with open houses and parties. Yes, that dish is gluten free, but it was prepared on a cutting board that just had bread on it. Holidays are so hard. Families sometimes just don't get it. I feel like I'm insulting people all the time. Well, here we are to get the word out. Glad this site is here.

Wow! I can't believe your mom would be so dissmissive of your Celiac!! I guess when you're a baby and under someone's 24 hour care it makes it more real?!?

I'm very grateful that my Mom not only is very supportive, but is going to try the diet herself. LOL, I was going over all the foods I *can* have, and she was impressed and surprised.

I'll be taking my own food for all events, and most of them I'm going to have at my own home. For Christmas Eve, we're going to slyly 'miss' the meal, so we don't have to deal with it (people are used to us bring our own food anyway for my son). I've requested to work the late shift and leave around 6, so that we'll be late for the party ;).

Thanksgiving is at my house. I did it last year, and I'm doing it again. I hurt a few feelings, but I simply cannot handle all the drama of the meal elsewhere! Dad and Stepmom are invited, but I'm not going to explain that its not jsut dairy free, but also gluten free! Hey, at least we've got eggs back this year LOL! :D

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This woman has a way of making me feel like I'm about 2 inches tall.

ummm..... stop feeling this way.

She clearly has sussed out your insecurities and uses them to manipulate you. Don't let her.

and, no, I don't know how you do this, but maybe if you are aware that this is what is happening, you can take control of it.

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There are some great educational videos out there on You Tube. I can't possibly explain everything to someone in person as well as some of these videos.

Sharing a video with them will help them understand the disease, show that it is a serious issue, and let them see how much information is really out there. They can also watch the video on their own time. Hopefully, they get sucked into YouTube and start watching the other related videos on celiac or the cooking demonstrations.

I'd try sharing a video, since text articles hasn't worked in the past and it is easy to watch and less imposing.

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I really have to disagree with that. When you have family that just won't listen, no amount of info, U-Tube or handouts will move them. They just don't want to be moved. I think the other poster has the best advice. Just say "Dr's orders" and let it go at that. When they see you won't be moved, persuaded or even drawn into a discussion about it's merits, they'll drop it. They know how to look up info if they want to. Your dad's wife just wants something to put you down about. It makes her feel more powerful. She's obviously threatened by your close relationship with your dad. If she didn't have this subject to criticize you for, she would find something else. It can be hurtful but don't let her seperate you from your dad. You are going to have to lower your standards as far as her behaviour is concerned.

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