How to tell 11-year-old daughter she has Celiac?

[aballard]

Hi everybody!

We learned a few weeks ago that our daughter, 11, most likely has celiac. We are awaiting our endoscopy to confirm the diagnosis, but based on her blood test numbers her GI is 95% sure she has it. Any tips on how to tell her? She tends to have anxiety and so we are planning on downplaying it, but any tips or talking points that worked for you would be much appreciated. Thank you!

[Ennis-TX]

1 hour ago, aballard said:

Hi everybody!

We learned a few weeks ago that our daughter, 11, most likely has celiac. We are awaiting our endoscopy to confirm the diagnosis, but based on her blood test numbers her GI is 95% sure she has it. Any tips on how to tell her? She tends to have anxiety and so we are planning on downplaying it, but any tips or talking points that worked for you would be much appreciated. Thank you!

This is a tough one, you will probably have to mix up lies and truths, play it out as a allergy? Explain her body now thinks these certain foods are poison and will make her sick. SO she has to avoid them to keep from getting sick. If she has obvious symptoms she will catch on fast after entering a gluten free phase. Once gluten free for a while and truly gluten free....when it is reintroduced many of us celiacs have violent reactions worse the before going gluten free. If she has these it will be a bit of mixed luck and salt to the wound but would help her learn that they truely make her sick and to avoid them. Going to a whole foods only diet will help, you will need to contact the school and teachers to make sure they do not give her or let her eat anything there that is not safe, thers is a medical plan for this in American schools.
Please read up on the Newbie 101 thread I might say reintroduce some processed gluten free foods after a month or so, there are many gluten free options for all normal foods like fish sticks, hashbrowns, chicken nuggets, etc. I will include a link with list of safe ones. Starting off whole foods will boost the healing process and make the whole reading every label transition eaiser. We normally suggest removing oats and dairy also at first to help. Many have minor to severe issues with dairy for while due to villi damage preventing the enzymes to break down lactose from being produced. Oats are commonly contaminated even gluten free ones in rare cases, also 10% of celiacs react to oats also.
I think there are some kids videos for allergies and gluten intolerance to help her I will see what I can track down for you.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/120402-gluten-free-food-alternative-list-2018-q1/
 

 

[aballard]

Thank you so much for all of this information. It is so helpful! 

[Jmg]

19 hours ago, aballard said:

Any tips on how to tell her? She tends to have anxiety and so we are planning on downplaying it, but any tips or talking points that worked for you would be much appreciated.

Hi and welcome

I would present it as a positive, which, although it may not seem that way at the time, it is.

Focus on the positive aspect, now you and her know what the issue is, and you know how to address it. Stress that this is a condition that has a very simple solution, the avoidance of gluten, and that though that will seem tough to begin with it will get easier in time. 

Focus on how lucky it is that you've found this out now when she's young and that means both the healing process should be more straightforward and you can prevent any long term conditions that people who may discover later in life may suffer from.

Don't downplay it too much, she's going to have to have to face some tough choices and gradually learn to take responsibility for everything she eats.  In time this may help her in other ways. 

Let her discover some of this for herself. Here's a page written for kids: Open Original Shared Link

Get a selection of the best gluten free substitute foods. Don't go overboard on them, they're full of fat and sugar, but do let her know that this doesn't mean the end of nice cakes, sweets, chocolates etc. Share them with her and discuss which is best etc. If they don't taste great to begin with don't worry too much, in time you forget what the gluten versions were like... ish

Maybe you'll find some helpful ideas here too:

best of luck to you both

Matt

 

[aballard]

Thank you so much! This is helpful and a good way to look at it. Part of what makes this hard is that she has no symptoms the majority of the time, only a few days of stomach aches every few months or so. The rest of the time she is symptom free, even though her TTGa numbers keep rising (up 20 points in 2 weeks). But thank you. All of this information and these resources will be very useful for us over the next few weeks. 

[Jmg]

10 hours ago, aballard said:

Part of what makes this hard is that she has no symptoms the majority of the time, only a few days of stomach aches every few months or so

That does make it a little harder. The messaging has to be about preventing harm and it may be a little more difficult for her to understand, there are plenty of adults who don't take the diet as strictly as they should because their particular symptoms aren't acute. 

However be aware that once on the gluten-free diet her responses could well change and she may experience a much stronger reaction to even a small amount of gluten should she slip up on the diet. 

[Teagan's mom]

Part of her anxiety may be related to the gluten.  My daughter's most noticeable symptoms are mood and behavior.  Maybe gluten free will curb the anxiety?  Good luck:)

[TexasJen]

I like all the ideas above! You've gotten some great advice. 

I wouldn't tell her until after it's official. No need to get her all worked up for no reason. Don't go into a lot of specifics until the diagnosis is final.

After that, reach out to other parents in your school and find the other kids with celiac. Invite them over for dinner and hopefully she will connect and befriend one of them. Even in our very small school, there are at least 8 kids who are gluten free and/or celiac along with at least 2 teachers.  They could really help with the transition.

Also, consider having the whole household eat gluten free at home. Then you won't be making multiple meals, she'll be safe and won't feel left out.

[Sienna2013]

Plus one to Teagan's response that this might help her anxiety; long-undiagnosed celiac disease turned out to be a significant factor in my DD's anxiety (age 11 at diagnosis, now 12), and she's slowly improving the longer she is gluten-free. 

I wouldn't sugarcoat it or lie about it. She's old enough to understand the basic function (BeyondCeliac has a video that explains it, too), and like JMG said, in some ways it's great news, because you have a path forward to her feeling better.

One thing to do right away - look into "camp celiac" - there are at least a few gluten-free camps for celiac kids (various locations across the country), and if you get on it right away, you might be able to get a spot for her. Mine really liked it last year - great to be able to relax about food for a few days and meet other similarly situated kids. (Seriously, research and apply for those today to maximize chance of getting her a spot.)

You might also ask your doctor about supplementing - mine is on vitamin D and magnesium, both things that can affect mood/anxiety if you're low on them, and celiacs are apparently often deficient in one or both. According to my kid, kombucha helps her feel better too (obvs the low/no alcohol kind, not the one you have to be 21 to buy!).

I would prioritize getting her to understand her diagnosis, how it affects her, and why she needs to be rigorously 100% gluten-free, and generally make sure sue is completely on board with it --  because in 5 minutes she'll be in middle school and much more concerned about peer pressure, fitting in, etc. At that point, it will be much harder for her to turn down the "gluten free" pizza (which really isn't gluten-free due to cross contamination, so it's not safe for her to eat) when she's out with her friends at the pizza parlor if she hasn't already internalized her new reality. 

I also agree with JMG that she will probably have much stronger reactions if/when she gets glutened after having been a while gluten-free than she currently does.

On the bright side, this is a great time to be a kid chef - see if you can springboard into an interest in cooking, so she can prepare such awesome lunches, snacks, etc., that it'll be her friends wishing they could eat like her instead of vice versa. Lots of fun cooking shows you can watch together

Definitely spring for a really nice lunchbox, thermos food jar, etc. -- she'll probably be bringing food from home for the foreseeable future (to school, to parties, etc.), so do whatever you can to turn it into a positive instead of something that she feels bad about.

Hope that helps!  If she would be interested in a pen pal, I can ask mine if she'd be willing to serve as a penpal/peer mentor/listening ear - just let me know. 

 

[aballard]

I want to thank everybody for their great advice. We took it all to heart. We are on week three of gluten free, and so far it has been okay with only a few ups and downs, mainly related to school parties and dining out. Because she doesn't experience symptoms, I worry that she is still getting gluten in her diet...I never know if something has been cross-contaminated, and we live in a place with a ton of gluten-free options (at bakeries, restaurants, etc.), but it seems a lot of these places don't really know what true gluten free really means. so it is a learning process. Thanks especially for the tip about Celiac Camp. Turns out there is one 45 minutes away from us and we are on the waitlist.  Again, thank you so much for all of your advice. It was so helpful. 

[HannahBick]

On 09/03/2018 at 6:31 AM, Sienna2013 said:

I would prioritize getting her to understand her diagnosis, how it affects her, and why she needs to be rigorously 100% gluten-free, and generally make sure sue is completely on board with it --  because in 5 minutes she'll be in middle school and much more concerned about peer pressure, fitting in, etc. At that point, it will be much harder for her to turn down the "gluten free" pizza (which really isn't gluten-free due to cross contamination, so it's not safe for her to eat) when she's out with her friends at the pizza parlor if she hasn't already internalized her new reality. 

That seems a bit harsh. I would think that an occasional "gluten free" pizza from the pizza parlor would be fine, especially if she is with her friends and it only happens once in a while.

Tests were conducted on Domino's pizzas Open Original Shared Link. They tested below 20ppm. 

[squirmingitch]

7 hours ago, HannahBick said:

That seems a bit harsh. I would think that an occasional "gluten free" pizza from the pizza parlor would be fine, especially if she is with her friends and it only happens once in a while.

Tests were conducted on Domino's pizzas Open Original Shared Link. They tested below 20ppm. 

I don't think that's harsh at all. There are real concerns about cross contamination in the kitchens with these "gluten-free pizzas". Even Domino's has a warning. 

• While the Gluten Free Crust is certified to be free of gluten, the pizzas made with the Gluten Free Crust use the same ingredients and utensils as all of our other pizzas.

Read the upper left big red box which says:

Domino's DOES NOT recommend this pizza for customers with celiac disease.

Open Original Shared Link

[Gemini]

I have to agree that this was not harsh in any way.  The poster's daughter is 11 years old and kids are incredibly smart.  They learn so quickly and it is very important that she learns the diet correctly and not be given the idea that taking extreme chances is OK.  If a person even begins to think that risk taking is acceptable, it could become the norm as she becomes a teen and then her health will go into the bucket again.  She has to learn that not eating the pizza will not destroy her life and she will move on and be fine.  Besides, the vast majority of gluten-free pizza out there sucks and she would do much better to learn to make it at home because you can make some really good pizza at home that will be safe and delicious!  Being harsh would be to bring a regular pizza home so that the rest of the family could enjoy some, while your child looks on and can't have any.......that's harsh and downright cruel.

[HannahBick]

10 hours ago, Gemini said:

Being harsh would be to bring a regular pizza home so that the rest of the family could enjoy some, while your child looks on and can't have any.......that's harsh and downright cruel.

What parent, in their right mind, would do that?