DD & Celiac ...

[Anonymous]

Just need some support - DD is 7 and we just got blood work back that her AGA is over 100 so we're making appointments with pediatric gastroenterologists. She doesn't know anything about it yet - we're not quite sure how to break it to her. How do you explain to your kid who already knows the joy of a normal diet with no restrictions that they'll now have to take their own food to playdates, not be able to eat cake at their friends' parties, and have to be super cautious about everything they eat? It is killing me right now. We're getting DS who is 4 tested too, but he's had some other food sensitivities already and is used to telling people he can't eat things and passing up stuff he'd like to eat because he knows it makes him feel bad. DD who already had the blood work hasn't had major discomfort so we hadn't even paid any attention to her diet. Ugh.

[Anonymous]

I would focus first on the positives--eliminating the gluten helps her body work properly.

With celiac there may not be much for kids in terms of explaining this, but I bet if you looked up info for diabetes or peanut allergy, you'd find helpful phrases that would apply.

In case this isn't the same OP, here are some recent threads on celiac disease that you might find useful:
http://www.dcurbanmom.com/jforum/posts/list/304450.page

These days, there's not much deprivation b/c there are so many gluten free foods. Many taste the same as their counterparts with gluten. I would take her to Zpizza or lilit cafe to celebrate with a big cake from Sticky Fingers afterwards.

[Anonymous]

Hi OP - I'm the OP of that other thread, and just want to say that I completely understand how you're feeling as we were in your position a few weeks ago with our 5 yo. (And sorry in advance for typos - am on my phone but wanted to reply quickly.)

We're obviously still grappling with the changes, but I honestly think it has been harder than me than my child. I can get caught up in the big picture, and feel sorry for myself about all the work and changes this requires, but my child gets upset briefly when there is a food she can't have and then moves on. She has made some complaints more generically about missing flour/flour things tasting better, but we've made big strides with that in terms on explaining that there are alternatives and we're just still in the process of figuring it out. And this has been helped by actually following through and getting those yummy treats, so I've made both a batch of GF cookies and GF brownies recently and we've taken her to the GF bakery as well. We also eat out a lot, so figuring that out has definitely been daunting, but there ARE restaurants that work for celiacs, so we are slowly figuring it out.

But I won't lie - even though there are lots of great GF options now (for which I am SO grateful), having to do this sucks, and there have definitely been negative emotions in adjusting to it. I still get sucker punched on a regular basis by another situation where the diet is a problem, most recently the surprise cupcakes at school and the food items at the end of a 5K where there were piles of bagels / cookies / ice cream sandwiches and basically nothing my kid could eat. And those times suck and make my heart ache for my kid. But even just a few weeks in it's getting easier and I'm starting to be able to plan better and anticipate some of those, and at the least it stops being so completely overwhelming.

And a few practical tips if you're ready for those:
-Order the book 'Gluten-Free Kids'. I'm about 1/2 way through, and it is definitely worth the purchase, as it talks about all the emotional aspects as well as the diet, and is focused at parents of celiac kids (most things seemed aimed at adult celiacs)
-Get a GF cookbook for kids and let her help pick out foods to make. We got 'recipes for gluten-free kids' and my DD has loved it.
-For birthdays, preemptively buy a pack of GF cupcakes to keep in your freezer. I also bought a thing of sprinkles since the store bought regular cupcakes generally have them. (I learned this last week when I did preschool dropoff and noticed a bag of cupcakes so had to run to WF and get them). But good news my kids was very happy with her cupcake, and there are now 3 more at the school waiting for the next b'day.
-Consider getting a breadmaker. We hadn't found good GF bread, but my IL's have a breadmaker and made a GF loaf (from a boxed mix) and my DD gobbled it up. So we will be purchasing one shortly.
-Hit up a good grocery store and pre-stock the house with GF alternatives to regular food items. For us this meant getting GF pancake mix, cereals, pretzels. I think as we get further into the diet we will transition to more naturally GF foods, but for now it has definitely helped to feel like we don't need to give foods but rather just find the alternatives.

And I'd be happy to try and connect by email if it would help to talk to someone in the same place who's still dealing with the emotional side of this diagnosis.

[Anonymous]

My DS was 3 when diagnosed and I think I lost a year of my life adapting to the changes - I really mourned that "regular life" that he wouldn't have that includes trip to McDonald's and spontaneous trips to restaurants based on location, not menu. I almost cried when we first went to a restaurant and they cooked him a hamburger on foil for him. I cried when I met an older girl at school who had celiac and was a normal kid.

I would definitely stress what she can still eat. Amy's Mac N Cheese, ice cream, popsicles, Bell & Evan's chicken nuggets, cakes and cookies from the Happy Tart. Freeze hamburger buns, cupcakes, etc for outings, grill chicken and steak for dinner. Get a rice cooker. Mine loves pickles, marshmallows, potato chips, hershey bars, chili and quesadillas on corn tortillas.

We bought a book Gluten Free for Emily and it would be good for your DD because it goes through the tests, sadness of having to bring your own food, etc. I recommend asking your friends if they know anyone with Celiac. I think it is very helpful for kids to know of others with similar restrictions. At our school, several kids have to bring their own food because of allergies, so my kid fits in and no one thinks its wierd nowadays. The change is the only tough part.

[Anonymous]

In terms of eating out, this group might have some good suggestions:

http://www.meetup.com/celiacdisease-112/

Also, mark your calendars!
http://www.dcglutenfreeexpo.com/

[Anonymous]

I have a 6 yo with Celiac and I also have it. I went undiagnosed for years. I have pretty severe case in which I cannot even eat GF breads and stuff. My ds has adapted far, far better than I. Kids are much better at these things than adults.

I take GF cupcake and snacks to dc's school. The school stores them. Work with the school! They are open to helping.

[Anonymous]

I went GF for several months for Hashimotos. The one piece of advice I have is to start thinking about food differently. I'm also a vegetarian, and I think most Americans consider filling meals to include meat and starch. If you start treating the base of the meal as meat and vegetables and starches (the processed GF foods you'll find in the grocery store) as more of a treat, I think you'll find that the diet can be easier and healthier to follow. Think about using rice and quinoa as the bases for meals when you do use starches and grains, instead of using rice pasta (it's kind of gross, IMO). Gluten is hiding in a lot of random stuff (Caramel coloring) and some people are sensitive to any foods that are processed or packaged near gluten foods. Anything that has "gluten free" on the label has been tested for gluten content (as opposed to TJ's, which labels foods "no gluten ingredients").

[Anonymous]

OP here - Thanks everybody. I'm going to process all of this and come back and reply when I'm over my tears of appreciation.

[Anonymous]

I presume you know by now about the DC Celiacs listserv? They maintain a wonderful restaurant database of restaurants where members have good experiences, with info on which places have GF menus, etc. It has been a lifesaver for our family. http://dcceliacs.typepad.com/

[Anonymous]

Thank you everyone so much for all of these resources. I got bloodwork back Friday and I'm also flagged. DD has her appointment with a gastro on Tuesday and mine is a week from tomorrow.

Are there specific questions you recommend that we should ask the gastroenterologist?

DS who has always seemed to have a sensitivity to something (he avoids chocolate and dairy and we limit his gluten) came back with normal antibody levels. We're waiting on the allergy panel. Chances he could still have celiac?

[Anonymous]

7:52 back. In terms of questions for the gastro, mine were of the 'what exactly do these results mean / what is the prognosis for recovery.' We also asked what it would mean to have positive bloodwork but a negative biopsy as our DD's endoscopy looked visually normal, though the biopsy later did confirm celiac with observed damage. Once the diagnosis was confirmed we asked what that meant (strict GF diet), what the future treatment plan would be (check in at 6 months, then yearly, optional redo of bloodwork at that point), and opinions on how sensitive our child was / how concerned we needed to be about cross contamination (since our child had only mild symptoms her suggestion was to do my best but not to make myself crazy over it.)

As for your son, it's possible to get a false negative (I believe it runs around 10-15%), especially if you're limiting gluten. At the same time, there are numerous non-celiac reasons folks have trouble with gluten. Our 2nd child also tested negative, and since she has no signs of a gluten sensitivity we're accepting that at face value. Since your son does have gluten issues it's probably at least worth asking the gastro about it. And I'd also ask if they ran the total IgA test, as one main cause for false negatives is folks who are IgA deficient.

[Anonymous]

7:52 again - I would also ask for any referrals to local resources. We've moved away from DC do mine won't help, but our hospital does have a specific Celiac Clinic (I'm pretty sure there's one at a DC hospital - Children's?), and our meeting with the gastro was followed by a meeting with the dietician who had a whole packet of helpful information about the diet and local resources, and also sent us home with a GF cookbook.

[Anonymous]

I would ask the doctor if he thinks you (or your child) needs to avoid dairy, which might be a temporary suggestion that is more common for adults since they have years of damage to heal. Also ask about vitamin supplements, especially for your child.

I would go into this being as strict as possible. Our doctor says he could tell through testing that one of his teen patients has a kit kat bar once a month as a treat. I want any mistakes to be accidental. We've screwed up a couple times over the years but only a couple times.

[Anonymous]

Anonymous wrote:Just need some support - DD is 7 and we just got blood work back that her AGA is over 100 so we're making appointments with pediatric gastroenterologists. She doesn't know anything about it yet - we're not quite sure how to break it to her. How do you explain to your kid who already knows the joy of a normal diet with no restrictions that they'll now have to take their own food to playdates, not be able to eat cake at their friends' parties, and have to be super cautious about everything they eat? It is killing me right now. We're getting DS who is 4 tested too, but he's had some other food sensitivities already and is used to telling people he can't eat things and passing up stuff he'd like to eat because he knows it makes him feel bad. DD who already had the blood work hasn't had major discomfort so we hadn't even paid any attention to her diet. Ugh.

To me, this is the kicker.

My family eats gluten free (the whole family) and this is only because my DH has Celiac and I noticed that when I went GF, I became so healthy. Now if I eat a pasta meal, I feel like total shit. It sucks my energy.

My kids are GF, but since it is only done for health reasons and not necessity, I don't have to deprive them of birthday cake.

Since you have possibly 2 kids with wheat sensitivities, you might want to consider making the whole house GF. It is hard for about 10 days, but then it becomes really easy. I now do most all my grocery shopping at the Asian grocery store. They have TONS of GF sauces and snacks. I've also learned how to cook Indian, Chinese, Vietnamese, and Japanese food. We are all so much healthier for it!