5-Year Old Daughter with Celiac & Dining Out

[jessiemariecar]

Hi! My daughter was recently diagnosed with Celiac a few months ago. My home is now 100% gluten-free and I’ve replaced most of my baking/cooking dishes on utensils. We’ve had no problems!

my issue is dining out with family. My family continuously makes dining plans with no regards to choosing restaurants that are safe or have gluten-free options. I am expected to just pack my daughter a lunch. I don’t know if I am overthinking this, but I feel like my daughter has the right to a hot served meal just like everyone else. 
 

Although she is only 5, she has made comments as to why she is the only one that has to bring a packed lunch and that she hates being different😩

I don’t want to be demanding and tell my family where they can, or cannot select to do celebrations, but it would be nice if they included me in helping find a safe restaurant. Am I asking too much?

My sister-in-law is planning a luncheon for her daughter’s first communion with absolutely no gluten-free options. My initial thoughts are to just attend the church ceremony and forgo the luncheon afterwards. Is this rude? Should I pack my daughter a lunch and attend even though she’ll be the only one not ordering from the menu of a party of about 40.  I feel like I need to advocate for my daughter, in being deserving of the ability to order from the menu. 
 

I know realistically, there will be many instances where I will have to make and pack a meal for my daughter to bring. I just don’t want this to be the go to solution.

Sorry for the long post! Just looking for thoughts on this matter. Thank you in advance!

[trents]

Welcome to the forum community, @jessiemariecar!

Your angst is a familiar struggle to many in this online community and in the celiac/gluten sensitive community as a whole. So, the first thing I want you to know is that you are not alone.

Let me offer some suggestions that will not totally eliminate all risks. Nor will they eliminate all social awkwardness. But, nonetheless, they may help make an unbearable situation less intimidating.

When your daughter will be participating in family gatherings in a restaurant settings:

1. Call ahead and ask for a menu or find it online. Ahead of the event, choose things from the menu that look to be naturally gluten free. Some restaurants actually have gluten free menu sections.

2. At the time when the waiter/waitress is taking orders, explain to him/her that your daughter has "gluten intolerant celiac disease." That's the term I have settled on because "celiac disease" alone is not yet widespread in the public medical vocabulary" Adding the word "disease" has some impact, however, and putting the terms "gluten intolerant" and "celiac" together may help them make a connection. Anyway, having said that to the waiter/waitress, then ask that what you order for your daughter be cooked on a clean surface or in a clean pan/pot and stirred and handled with clean utensils to avoid cross contamination. If you seem to get brushed off by the waiter/waitress, ask to speak to the cook or even the manager.

When the meal is being held at a family member's home, enquire ahead of time what the menu is and determine what your daughter can eat and what she can't from what is being offered. Ask for recipes so you can have insight into ingredients. Be prepared to have bring some substitutes for the things that your daughter can't have from what is being served. She may be able to eat some things being offered but not others.

Obviously, my suggestions would require you to practice a higher degree of assertiveness than you or your daughter may be normally comfortable with. But keep in mind, you are dealing with something more important than social acceptance and fitting in. Your daughter's health is at stake here. Coping with celiac disease requires adjustments not only to eating habits but to social habits. That is reality. Over time, you and your daughter will become more comfortable with it and so will friends and family members, with the likely exception of some outliers. Trust me, this becomes the new norm over time. But if you are willing to become assertive for the sake of your daughter's health you may also be modeling some valuable behaviors that she will adopt and will serve her well down through the years. 

I have had to learn that I cannot expect the world to bend around me and my celiac disease. So, I'm the one that has to make adjustments, not everyone else. Then onus is on me, not them. But I have also learned that I have to be my own advocate.

Lastly, I am including this article that you might resonate with: 

 

[trents]

I just wanted to add that another way of saying much of what I said in my previous post is that it is important to take control of the situation rather than letting it control you. Let go of the elements you can't control but cease control of the ones you can. Don't fear what others will think about you. You need to do what you need to do to protect your daughter while at the same time allowing her to have as normal a social life as possible. 

[jessiemariecar]

Hi @trents and thanks for the welcome. Great article, I enjoyed it and am going to give it a second, more thorough read. 
Agree with all the advice given.

We’ve been invited my to a family celebration at a restaurant and I’ve already looked at the menus and there is one dish that is roasted chicken, mashed potatoes & veggies that “maybe” I can order but I’d need to contact the restaurant first before I can make that decision. I’m much more comfortable with family gatherings at a house because I feel like there’s more flexibility. My little one has already expressed not wanting to bring her own lunch. I think she feels left out and embarrassed . I’ve never pushed these thoughts on her, I’ve told her it’s to keep her safe and she seems to understand but she says she’d rather eat at home than bring a packed meal. 

Then, there’s the issue with family getting offended by our absence.

I am hopeful that family will be more mindful when selecting restaurants in the future or at least ask me to help find options…but as you said, I cannot expect others to bend around our issue. I say “our” because I’m in this 100% with my daughter. If she can’t eat off the menu, neither can I. It’s that simple‼️

[trents]

How does your daughter react physically/symptomatically when she gets glutened? I'm not a super sensitive celiac but if I get much more than a trace I get violently ill with hours of intense abdominal cramping, emesis and diarrhea. The amount of soy sauce in small appetizer-sized cup of soup at a Chinese restaurant will do it for me. So, I would do anything to avoid that. Are her reactions to getting glutened direct and intense enough that she can make that connection? 

I certainly understand her feeling being left out. I think every celiac struggles with that at first. But eventually, you get used to it and it becomes the new norm, just part of the reality of your life. So, hang in there. Most family members will also adjust. It just takes time. Please watch this: 

 

Edited March 27 by trents

[jessiemariecar]

My daughter gets really bad stomach pains, vomits and a fever! She also complains about soreness inside her mouth. 

[Guest]

Maybe you could gently let your sister-in-law know about your daughter's dietary needs and offer to help find a restaurant with gluten-free options. If that doesn't work out, attending the ceremony and skipping the luncheon doesn't sound rude at all. Your daughter's well-being comes first, and sometimes that means making tough choices.