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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 Do You "break It" To An Older Child?
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11 posts in this topic

I have already notified my 7, soon-to-be 8 year old son, who is also peanut allergic since age two, that a screening for a gluten intolerance came up postitive, and that we would need further testing to confirm it. The further testing would take place in the upcoming weeks. I also explained what it would mean to him if the diagnosis was positive. I wanted to give him time to get used to the information, rather than keep him in the dark and then shock him by a drastic change in diet with no prior warning.

It was a sad experience, when I had to explain to him what was going on. My son has a school friend who he sees regularly, and when I told my son's friend's mother what was happening, she immediately focused on my delivery of this news to my son. It was too late, since it was already discussed with him, but for some reason, I didn't say anything because I didn't want to be interogated on the spot and scutinized for the way I handled the situation. I felt it was very personal.

She began telling me to go about it in all the ways in which I hadn't. She thought I should just slowly and gradually move him into the diet, without ever explaining that the foods he once ate hurt him. To make as little of a deal about it as possible. When I mentioned that eventually he was going to put two and two together and start wondering what was going on, she saw my point and said I could explain each time he asked for a new thing that he couldn't have it.

I started feeling very uneasy- I think this is devious and a child should be explained outright in the gentlest way possible what the truth is. I understand her idealistic idea of shielding him from the shock of this change, but I don't agree with the "beat around the bush" way of introducing the new diet.

I am very forthright and yet still very gentle with my son, with a bad habit of over-explaining things at times, or explaining more than he needs to know, but my son and I are very close with a tight, tight bond and I have always treated him respectfully even as a child and had a hard time even lying about Santa Claus. I was so afraid he'd be mad if he found out we lied- (he still doesn't know the truth about Santa!) And he DOES have a very just nature and is offended when he discovers other children and even some grown-ups have lied to him. He doesn't "get it" when other kids make up stories that he finds out are untrue, yet he is very creative and has no trouble using his imagination for his artwork. So I just can't see this jiving well with my son.

In another conversation, she told me that my role as mother is to be postive and project that onto my son. "It's all in attitude, after all, there are people missing limbs who compete in the Olympics."

I understand that completely, but don't know why she assumes I don't understand my role as his mother. I feel that it's not going to be happy news if I have to inform him of the Celiac diagnosis, not for him. Me- I feel relief if that's what it is. My son is too skinny- I can't wait for him to gain weight.

But, I'm telling him of a loss and of a gain at the same time- I must treat it as a loss and as a gain. To treat it as a gain without acknowledging the loss, it's like invalidating his feelings of loss, or trying to create a fantasy that the loss isn't real and he isn't entitled to feel it. I think that's wrong.

Psychologically speaking, how did you all "break it" to your older children who can really understand what happeing, that they have a positive diagnosis and the big changes in their diet? It seems others who haven't gone through this are giving me a lot of advice on handling it- (which I honestly never expected- I just want to talk about what's going on but I was never asking them what I should do) but since I'm on the recieving end of all this advice from those non-experienced, would others who are living it care to share? Thanks. :)

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You say that your son values being told the truth, he does not understand lying. That is good. It is also good that you have told him about the test being positive, the need for more tests, and what will happen if they come back positive. I think you are handling it very well. Your son sounds like an intelligent boy, and he will figure it out eventually. It is my opinion that you are doing very well with your son.

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Sharon,

It sounds like you are on the right path in discussing this with your son.

After all, you know your child better than anyone else.

I took a similar approach with my daughter. All three of my children were screened as a result of my being diagnosed with celiac. My daughter's blood work came back very high positive. We (my husband and I) were shocked. She had no symptoms. I explained her test results (we even had them done again, just to be sure) and proceeded with the biopsy.

I tell you, it is really hard to explain this to a child... especially one who doesn't feel sick in any way. But, she is a strong, understanding child, and accepted her diagnosis. In our situation I explained that gluten has damaged her intestines, and that she would get really sick (like I did) if she continues to eat it. I even explained to her about villi and how it is needed to absorb nutrients to help us grow. I explained that gluten "flattened out" the villi so it couldn't do its job, and this is why people with celiac eventually get sick in some way. She had just turned eight when we recieved her diagnosis.

That was it. She immediately went on the gluten-free diet. There was no "This is your last oreo" or "this is your last piece of real pizza" type of discussion. I thought that would make it too negative. However, I did make sure that during the days leading up to her biopsy I did give her all the gluten-filled goodies she wanted, I just didn't tell her I was doing it.

I did try to focus on the positive. I have taught her to read labels, look things up in the gluten-free listings, and we always plan ahead for the parties, sleepovers, etc.

No doubt about it, it is tough on them. But it sounds like you've got a great kid who will rise above all this.

Best of luck you and your son.

Ruth

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Ditto - It sounds like you did everything I would have done with any of my kids. I find some parents like to give advice even when they don't have any real experience with that topic.

-Kate

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P.S. Sharon... I forgot to mention, I think you are right about the "loss as a gain" aspect of dealing with this. It does come up sometimes, "Mommy, I wish I didn't have to worry about what I have to eat" or "Mommy, I wish I could have the same pizza as everyone else at the party" .... It's true, we cannot diminish the real feelings of loss, etc they will have as a result of this diet. I just hope it makes them stronger/more understanding if they meet addtional adversity in their lives or when they meet others with differences.

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Hi - I didnt have to "break it" to my kids, they are told Everything - every step of the way. You can only shelter them so much.....she had no right telling you how you should Talk to your kids - Everyone is different.....and it is your kids body. The kids need to know. my 4 year old is very ok with it. We deal with it, we are constantly getting educated so it isn't a big deal. Yes it is overwhelming at first, but Everything new is.

I had to tell my kids that their dad passed away, should I have "sugar coated" that? I had a friend who wouldnt let her teenage daughter Attend funeral services (even though the teen wanted to) - both my kids were there. it is life. let's live it.

Dawn

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I think you're handling it pretty good, too. Well, nothing against Santa. Kids have to be kids at some point. But what concerns your sons health, you did a good job. It's necessary that he knows the truth. And like this he learns that the truth not always is good. But he learns to handle it.

Lots of greetings, Stef

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Your child is old enough to understand. If he was 2, I wouldn't of explained it as deep bc they just don't understand at that age. And they also don't have to fend for themselves. Your son is at an age where he will be out "in the world" at friends houses, at school, etc... and he will have to deal with food every step of the way. And, unfortunately, more times than not without you there to guide him. So, that said, "sneaking it in there" would totally be impossible. Obviously this woman didn't understand there is no "gradual" here...you have to try your best to eliminate it or you will still have a sick kid on your hands 3 months from now. Sigh. Why don't people worry about their own lives???

Bridget

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Sharon,

Kudos to you on how you openly discussed with your son about celiac and diet changes. Many a times, people want to shield children and don't tell them the truth and sugar coat things. If adults treat children in this manner on a continual basis, a child never learns how to deal or cope with the struggles of life. I applaud your willingness to be honest and forthright with your son. When our 9 year old son was diagnosed in March of this year, my husband and I sat him down and discussed openly about the changes we would be making to his diet and most importantly, why, and the benefit it would have for him. His only response was, "Ok, and that means I can't eat at Pizza Hut anymore, right?" Don't let another mother who has not walked in your shoes make you feel you didn't do the right thing. I believe just reading the other posts from parents supports your decision. Remember, you know your child best! But also, as a mom you know what is best for your child. In the end, your child will be confident, know that his mom loves him very much and also if he will be healthy and growing!

Mom 2 2

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It sounds to me like you did the right thing. My son is only 3 but we talked with him and I explained what was going on and why he had been so sick and what we needed to do to make him feel better. I couldn't lie to him and I feel better explaining it to him even though he doesn't fully comprehend it yet at least I know I am being truthfull with him and not beating around the bush...

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:rolleyes: here i go again--guess i have 2 cents worth of knowledge--i have 5 kids and i worked out of my home so i could always be there for them-i was always a room mother, i did so many extra things at school that many people thought i was an employee there, they still ask and my youngest is 2 :P --when my middle son nick was in 5th grad, he says to me, "mom, why do you always do the parties and stuff at school"? and i thought--here it comes, nick doesnt want me there anymore, i am embarrassing him :( and his next words melted my heart--he said, "dont the other moms care enough to help"! :lol: i was so relieved and yes before you working moms get riled, i did explain to him that sometimes other parents just cant be there-------my daughter once wrote an essay on how i am her hero--she had hip surgery when she was 2 1/2 and she explained how i never left her side and she said so many nice things--i still have that essay packed away---all i can say is--raise your kids the way you feel you should and i agree with everybody else here--you did a wonderful job with him--keep it up :D
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