Family member with celiac - need help navigating

[Anonymous]

Parent with a kid with celiac -

It depends a little on how severe her celiac disease is. There are people who absolutely can't even cook with the same pots and there are others that just need to be very careful when they go out to eat.

Going out to eat by yourselves shouldn't be a problem whatsoever esp. for an adult. Keep your foods with gluten as separate as you can ie rolls, bread, bagels are easily kept separate. Maybe don't make fresh pizza dough or bread or pie crusts with your family there (as members of my family sometimes do).

If at all possible, try to plan for joint meals that don't involve gluten. Potatoes, fresh corn, risotto, corn tacos, salads are all good. Pasta can get difficult because you end up needing to boil two different types on the stove at the same time and people will forget which spoon etc went with which pasta. If the family insists on pasta, either have her bring precooked noodles or bring precooked noodles for your kids so you aren't trying to cook two pots at the same time.

Go out for ice cream instead of pie or cake.

[Anonymous]

My MIL is gluten free, although not to this level. We plan gluten free meals, including gluten free carby options for the kids like mac and cheese or cupcakes. There are lots of products out there now.

If there are things your kids must have that cannot be done gluten free, then given her concerns about dust (that's a new one for me) honestly I would not share a home with her, or else I would plan to dine out. I would find it too stressful to keep everything sealed and separated.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Can you sub out some of your gluten heavy regular foods for rice dishes, GF fries, potatoes, corn tortillas/taco shells, etc.? I get that the house will be hard to be fully GF, but it would be helpful if you can try to plan GF where you can.

If that is helpful for her, I'm certainly willing to try it. Our kids love that stuff too - rice, potatoes, corn.

OP, just a note of caution-- It's not just a matter of simply substituting grains that don't have gluten. If those grains are grown in a field that has previously grown wheat, for example, that will be a problem. So you really need to read labels, etc. Other posters may have some more specific advice on this particular point. I'm the PP with the niece and nephew with celiac, and yes, my niece will vomit violently from even this kind of cross contamination.

It takes attention, but you all can figure out a way to accommodate your SIL and have a great vacation together. My sister's family successfully toured Italy one summer!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:No the person (if an adult) with the food sensitivity needs to be the one to take responsibility for their safety. With eating out, if she really cannot handle a place that has a gluten free menu (assuming you can find one), I personally would have some people go out and some stay behind so she isn’t all alone but I think there are lots of acceptable ways to handle that.

Well, assume that there is a lot of dysfunctional family communication, OR complete lack of communication between my SIL, my husband, and her parents. Is there any way either I can bring it up or encourage my husband to bring it up? Or should we just go with my husband's and in-laws assumption that she doesn't actually have celiac and this is a non-issue? Or, I guess what you are saying is that we should just let my SIL take the lead in terms of acommodations that need to be made, but otherwise just approach as if there are no gluten issues?

WTF?? No, use the PPs' posts to inform yourself about possible accommodations, then call her and ask how she'd like to proceed.

PP here. Sorry I got snarky with the "WTF??" comment. You sound kind and well-intentioned in your follow up posts. All this pandemic stuff is affecting my mood!

[Anonymous]

Anonymous wrote:

Anonymous wrote:A diagnosis of celiac disease is quite rigorous. If she's been diagnosed, she has it. And even if she doesn't suffer painful side effects of gluten, it can damage her intestinal tract and raise her cancer risk. She is absolutely right to be vigilant, and shame on anyone who challenges her on it. And it's not "related to her anxiety" -- it's exactly what every person with celiac has to go through, complete with people rolling their eyes about how silly you're being.

Also, they her family is completely ignorant if they think you can't develop celiac after testing negative. I have genetic celiac in my family. Non-celiac family members are tested every 3 years, or every 1 year if their results are borderline. My niece with years of negative tests is now positive and has celiac.

Do not try to have everyone have a gluten-free diet. It's difficult, expensive, and often less pleasant. DO provide her with a separate space for her GF food, and respect it. Do be conscious about wiping countertops, although I'm sure she also cleans them herself.

Ok, thank you, this is so helpful to hear. My husband has the idea that if you test for something enough times, you're eventually going to get a positive result. So it sounds like it would work just fine to just eat as we usually do, but to just be mindful of surfaces and cross-contamination.

Jesus, he's really not a medical professional, is he? A false positive for celiac would be incredibly rare. Requiring her to have an expensive and invasive biopsy for his satisfaction is awful.

This poor woman. I think the most you can do for her is to give her some respite from her nightmare family (including your, I'm sorry, butthead husband) by actually treating her medical needs with respect. A small gesture of kindness means a lot when you're used to fighting the world. I brought my kid to a pizza party and found out that my friend, the party's host, had gotten me a small GF frozen pizza and cooked it on a sheet of tin foil. I almost cried at how nice the gesture was, and how kind it was of her to think of me and make me feel included.

Maybe bring a box of individual sheets of wax paper/parchment/tin foil and offer them to her as a food preparation surface. Or breakfast bars marked gluten free. Just a signal that you don't think she's being a needy drama queen or whatever. I bet it would mean a lot to her.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Can you sub out some of your gluten heavy regular foods for rice dishes, GF fries, potatoes, corn tortillas/taco shells, etc.? I get that the house will be hard to be fully GF, but it would be helpful if you can try to plan GF where you can.

If that is helpful for her, I'm certainly willing to try it. Our kids love that stuff too - rice, potatoes, corn.

OP, just a note of caution-- It's not just a matter of simply substituting grains that don't have gluten. If those grains are grown in a field that has previously grown wheat, for example, that will be a problem. So you really need to read labels, etc. Other posters may have some more specific advice on this particular point. I'm the PP with the niece and nephew with celiac, and yes, my niece will vomit violently from even this kind of cross contamination.

It takes attention, but you all can figure out a way to accommodate your SIL and have a great vacation together. My sister's family successfully toured Italy one summer!

Rice is really not subject to cross-contamination. Oats definitely are, so make sure you purchase ones specifically marked "gluten-free". Corn is also rarely a problem unless it's been processed on shared equipment (should be marked). Mission corn products (tortillas, tortilla chips, etc) are all marked gluten-free.

As a long time celiac, if you're cooking a meal that is gluten free, I would love to be invited to check out the ingredients. There are a few "gotchas" like soy sauce or malt vinegar, so an experienced eye can quickly spot problems.

[Anonymous]

My kids and husband love gluten too, but I've noticed that if the only available snacks are potato chips and tortilla chips and the cereal is Chex and Cheerios and there's lots of potato or rice based sides with dinner they don't even notice that they're not eating gluten. And they'd happily devour my GF Oreos and ice cream...

There are plenty of ways to make this weekend easier for your SIL without making it difficult for everyone else. Thanks for having the decency to reach out on how to go about that.

People who are not used to cooking GF will absent mindedly put something down on a countertop that previously had something with gluten or not notice that the toaster is dropping crumbs, etc. I feel comfortable when DH or my SIL is cooking, but I know that even though he's well intentioned my BIL just won't pay attention. As PPs have said, if you can engage her with meal planning, hopefully you can figure out at least a few meals that don't have to have gluten so that she doesn't have to worry about what might be contaminated.

[Anonymous]

Anonymous wrote:

She is extremely gluten-vigilant. She said she had to train her family about cross-contamination, about the dangers of gluten dust, and keeping foods containing gluten separated and sealed. As for that level of vigilance - I think it is related to her anxiety, but at the same time, I can empathize if even small amounts of gluten end up making her feel very ill.

If she has celiac, this is exactly the appropriate amount of vigilance. Seriously.

Yes. My niece has Celiac. She brings some of her own food and is extremely vigilant about cross contamination. Op, this is necessary. She has also brought her own pot, cutting board, etc. She makes toast in the oven.

We had two dishes of butter - one hers, one everyone else used. We double check with her before adding things to common dishes. (Salad dressings, seasonings) Generally less processed foods are safer.

Op, talk to her about what she needs. A part of the kitchen that contains her things and only she uses might be preferable. We had one weekend where cross contamination happened. She felt pretty gross. Someone offered her Tums. Don't do that.

[Anonymous]

BTW - your husband and his family are asses. She's not "gluten free" because it's trendy. That's what upsets me about the trend -- people who truly have celiac disease are doubted and poo-poo'd. My niece had a biopsy, one of her brothers still doubts it.

Would they ignore someone with a nut allergy?

[Anonymous]

I have Celiac for a long time (along with a few other autoimmune conditions) and for me it does not matter how accommodating people are (i.e them trying to cook Gluten free food) because they usually screw it up. I got gluten'd by a can of beans while visiting my sister and when I was visiting my in-laws they wanted to make some homemade Chinese and they swore up and down they were cooking gluten free and then I saw them using Soy Sauce that clearly said "contains wheat".

Point is, ask your sister how she wants to handle it. When we are visiting people I usually bring/shop for my own food when I get there and I tend to stick to whole foods (nothing wrong with a chicken breast and green beans for a meal). I really try to put the burden on me, not anyone else. The rest of my family is NOT gluten free nor do I encourage them to be. I have my own pans, toaster, air fryer and with foil, etc. you can manage nicely in a shared house environment.

With the popularity of Gluten Free diets things have gotten much better. Its easier to find food, condiments, snacks in the grocery store with better labeling and the food itself tastes so much better as they are putting effort to serving that bigger market.

[Anonymous]

I would talk to her and just say you want to figure out how you can help create a safe environment for her and keep everyone fed.

[Anonymous]

A lot of the GF products are really good now. We have two in our house with celiac (which, FYI, we never confirmed with a biopsy), and even the picky third child eats just fine. GF pastas are really good now, so do spaghetti night but make it GF for everyone. Same with pancake mix. And brownies. Most people won't even notice a difference with these products.

To have celiac you need to have the gene, but no one really knows what triggers it. It gets "turned on" at some point. That's why we test our third child periodically as well.

Agree with the others on showing kindness here. Google to find out how much gluten can trigger people. There is a reason celiacs worry about cross-contamination.

[Anonymous]

My 20 year old daughter has celiac. She is extremely sensitive to any cross contamination, and something as simple as someone touching something with gluten before touching her food results in 1-2 days of vomiting/diarrhea/dramatic bloating/joint pain/rashes/headaches that begin about half an hour after eating.

That being said. The rest of us eat gluten around her without issue. We can make two versions of spaghetti in two pots and eat dinner together just fine. We have two sets of most kitchen things, she has her own toaster oven, she does a lot of her own cooking by choice. Her food has its own shelf in the fridge and cabinet in the kitchen and she has her own butter and things like that that could get contaminated by utensils. We eat out together and she will research and call ahead to find out what she can eat there and make sure it’s safe for her. It’s been pretty normal for all of us, and I don’t know if that’s because she’s just mature, resourceful, and easy going, or if it’s just that easy. She was just diagnosed about 6 months ago when she started having all of the above listed symptoms after almost every meal and went to a GI.

I would say talk to this relative. If this is an air bnb or something, ask if she needs to bring a few pans to use that she knows aren’t contaminated. Ask if there are some restaurants in the area that sound good to her. And try not to go out for pancakes and waffles anywhere…those places are just impossible.

[Anonymous]

Celiac requires the same level of careful attention as an anaphylactic allergy. The tiniest amount of cross contamination can cause a dramatic and days to weeks long inflammatory response.

[Anonymous]

Anonymous wrote:Can you sub out some of your gluten heavy regular foods for rice dishes, GF fries, potatoes, corn tortillas/taco shells, etc.? I get that the house will be hard to be fully GF, but it would be helpful if you can try to plan GF where you can.

This!! My sister has celiac and it is no problem to make things gluten free if you really think about it. Potatoes, rice, meat, seafood, beans, eggs, dairy. Just know things like soy sauce have gluten and check labels for things in boxes.