celiac mom

Casadena · May 7

Dear Prudence,

My 10-year-old daughter was just diagnosed with celiac disease. This is a serious medical condition, and while there’s a simple treatment—a lifelong gluten-free diet—it’s a big adjustment and huge learning curve for my daughter, my partner, and me.

I’m annoyed at some of the reactions I’m getting from friends and family who seem to think it’s no big deal, and who say uninformed things meant to minimize our concern. Most people say something like, “it’s a great time to be gluten-free!” And they’re not wrong! There are lots of gluten-free options out there today. We are working with my daughter to make the transition an empowering one, where we get to try new foods and experiment with gluten-free versions of our favorite dishes. But there is a lot of grief and that comes with navigating a diet where all your favorite or special foods contain gluten, where every party and holiday is celebrated with gluten-containing foods. No one seems to realize how much work or stress can be involved in “just eating gluten free.”

The thing that really is bothering me is that when I try to explain the risks and limits of cross-contamination—you can’t just assume a gluten-free option at a bakery or restaurant is safe for celiacs—I’m getting push-back. People are telling me it’s no big deal, they know someone with celiac who eats out all the time, etc. I don’t know if this is coming from good intentions—it usually happens when I’m talking about safe food with someone who wants to feed my kid—but it comes across as condescending and unsupportive at best. At worst, these people are signaling to me that I can’t trust them when it comes to food, because they’re not taking my daughter’s health and safety seriously; they seem to think I’m just being extra. How can I navigate this? I want to keep restrictions on my daughter to a minimum, but that requires trusting others to follow rules they don’t seem to think are important. And on top of all that, it would be nice to get some actual support from my friends and family while I’m trying to adjust to a significant diagnosis for my kid.

banana468 · May 7

"Yeah the people who eat out all the time are lucky they found places that work with their situation. There are also a lot of people who talk about needing to forego gluten who have an intolerance of it but aren't actually diagnosed with an IBD like Celiac. It's so critical that she not receive gluten because of its internal and outward effects. The older she gets the more likely it can cause illness for days and that means she misses life."

Encourage those who are close to you (like immediate family) to read more on it. And then remind them of what the practices need to be for her to eat out. The restaurant can't cook the GF pasta in the same water they may have previously cooked regular pasta in. The GF chicken cutlet needs to be cooked on a separate surface or one that was completely cleaned from the regular cutlet. Remind them that although exposure to gluten doesn't lead to an anaphylactic reaction like a shellfish allergy can be, it's still serious and requires a major understanding of industrial kitchens and practices to avoid any cross contamination.

levioosa · May 7

And this is another example of how the Wellness Industry has done real harm to people living with actual chronic illness. Celiac can be deadly. People throw around "gluten allergies" all the time and it's not true. It used to drive me crazy when H's mom would say she had a gluten allergy but then "take a supplement" and go ham on pizza when we'd go out. That's not how it works at all.

MyNameIsNot · May 7

I get the frustration, but I also just don't see the point in trying to convince other people. I don't think you're going to get safe foods in anyone else's kitchen even if they do listen.

banana468 · May 7

levioosa said:

And this is another example of how the Wellness Industry has done real harm to people living with actual chronic illness. Celiac can be deadly. People throw around "gluten allergies" all the time and it's not true. It used to drive me crazy when H's mom would say she had a gluten allergy but then "take a supplement" and go ham on pizza when we'd go out. That's not how it works at all.

Right! Maybe LW also needs to decline eating at the homes of these people because they know contamination is possible.

charlotte989875 · May 8

Is there a little grief about your kid having a chronic condition you don’t expect?

I’m in it right now with J. We caught his condition, it’s not life threatening, it has (scary) treatment options available if his symptoms get bad. But he will live with this forever. It drives me bananas that people say “well at least you caught it early” and “he might never have bad symptoms”. Okay yes that true- and I now have to watch him for symptoms forever, have regular MRIs potentially for a long time, require regular specialists visits- like I’m glad it’s manageable but I’d really rather not have a kid going through this.

All that to say- maybe these well intended comments LW is getting will grate less in the future, maybe she will feel up to take suggestions and tips- and right now it’s okay to recognize that it’s not landing for you and just politely say “this is what works for her with the treatment plan we’ve developed with her care team”.

banana468 · May 8

charlotte989875 said:

Is there a little grief about your kid having a chronic condition you don’t expect?

I’m in it right now with J. We caught his condition, it’s not life threatening, it has (scary) treatment options available if his symptoms get bad. But he will live with this forever. It drives me bananas that people say “well at least you caught it early” and “he might never have bad symptoms”. Okay yes that true- and I now have to watch him for symptoms forever, have regular MRIs potentially for a long time, require regular specialists visits- like I’m glad it’s manageable but I’d really rather not have a kid going through this.

All that to say- maybe these well intended comments LW is getting will grate less in the future, maybe she will feel up to take suggestions and tips- and right now it’s okay to recognize that it’s not landing for you and just politely say “this is what works for her with the treatment plan we’ve developed with her care team”.

Hugs. RIght there with you.

I want to shake the people who claim to love and pray for my kid a ton and are grateful the prayers work. But she's still missing half a school day every 6 weeks for a biologic, we pray she gets to stay on our insurance until she's 26, and if you keep voting for people who are anti vaccine do you realize that SHE is the kind of person who is affected? Yes, she eats a roughly normal diet so you don't see that she's just ANGRY when she walks in the house and knows that her dad and brother ate popcorn because it's her favorite thing and she can't have it.

It's IBD awareness month (I misspoke -celiac isn't an IBD as it's in the small intestine as CHiquita schooled me last night) and I am praying that she doesn't build antibodies to the biologic she's on. Can you imagine that you hope and pray that your kid gets to keep her colon and not need to sport an ostomy bag with a summer bikini? And if she does, that people know it's OK?

And that some day when she's not on our insurance that she can afford to be alive? Because I remember holding the kid who could hardly talk who couldn't lft her head off a pillow and had a therapy dog come visit (kid LOVES dogs) and just stared blankly. I'm so grateful right now that my main concern is standard teenage stuff - but that doesn't mean a chronic illness can't change quickly.

Oh, and college is coming up and I'll have a field day if someone starts to talk about using the GI bill for a TON of reasons but also - she can't because she doesn't qualify.

short+sassy · May 14

I've lost count of the blatantly ignorant and incorrect things have told me about T1 diabetes. She and her daughter are not going to be able to escape people downplaying celiac and believing they're right about a disease they know nothing about.

For their own mental health, the LW needs to find ways of coping with this that she can pass along to her daughter.

I will politely correct someone...once. I'm understanding about misinformation and happy to educate people, when they're receptive to it. But that rarely happens. Most people won't admit they're wrong even on subjects they don't know anything about, including medical conditions.

The LW shouldn't waste time, energy, and frustration trying to explain and convince those kind of people. A short statement that doesn't encourage engagement is usually best. Like, "You don't understand this condition and have no idea what you're talking about, so I'm not discussing it further with you." Rinse and repeat. Though with daughter being so young, she might be more comfortable with a softer statement.

As for the "it's not so bad" friends and family, the LW should be polite but blunt again. That while she understands they are trying to make her feel better, it comes off as condescending and they need to stop it. Cue horrified, serious face while responding, "Excuse me? It's NEVER a good time for a child to be diagnosed with a lifelong serious medical condition."

Unfortunately, the LW cannot entirely trust anyone to follow the food rules. Definitely not the friends/family who don't understand how serious it is. But even people who do understand and are 100% supportive can make mistakes.

celiac mom

Re: celiac mom

Choose Another Board

Search Boards