Family member with celiac - need help navigating

[Anonymous]

Hoping to hear from people with celiac or with loved ones with celiac. My SIL was diagnosed with celiac about 5 years ago. She has a history of eating disorders, anxiety, depression, PTSD, and many health complications. For that reason, her immediate family members questions the validity of the diagnosis, saying that she was tested for celiac in the past, but tested negative.

However, I believe her. Maybe she developed it over time. 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.

We have a family trip coming up where we are all staying together in the same house for a long weekend. We have not been under the same roof since 5 years ago. Our kids have a very gluten-heavy diet.

My question is - should I bring up the gluten issue? And if so, what is the best way to bring it up? I don't even know how to begin to address meals and such. Should we as a family/group try to stick to a gluten-free diet for the long weekend? It will be a total of 12 of us. How difficult would this be with typically gluten-loving but very picky children who have bagels for breakfast, rolls with their pasta dinners, and sandwiches for lunch? Would it be rude if we sometimes just went out for meals on our own?

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

My sister has celiac, while she remains gluten free, her husband and children still eat gluten. She has certain appliances and utensils that are gluten free only. I would be accommodating of SIL, but not force the entire party of 12 go gluten free. Maybe corner off a section of the kitchen that will only be used by her. When picking out restaurants, check to see if they have a gluten free menu (most do) or run it past her to make sure there’s something she can eat.

[Anonymous]

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?

[Anonymous]

Agree that it’s largely on her. She may need to do things like bring an extra toaster. If she does that, make sure it’s clearly marked and everyone else knows not to use it. Same for things like peanut butter or cream cheese - she may need a separate dedicated container that gluten-y knives aren’t dipped into.

It’s her job to have what she needs, but the rest of you need to respect those things.

[Anonymous]

There are often false negatives in celiac testing (the blood test) depending on what she was eating leading up to the test. She very well could have tested negative, even multiple times, before getting a positive blood test that prompted the biopsy.

My nephew tested negative for a few years before finally being diagnosed. His sister was diagnosed as a baby because she has violent vomiting with even a scant exposure. My nephew was just really thin. My sister had him tested every year with his well visits because she suspected a problem.

[Anonymous]

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.

[Anonymous]

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.

[Anonymous]

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?

Your poor SIL. If she has a diagnosis, she has celiac, and her "family" is inflicting physical harm on her by making it difficult for her to avoid gluten. She needs to not vacation with these aholes.

[Anonymous]

Anonymous wrote:There are often false negatives in celiac testing (the blood test) depending on what she was eating leading up to the test. She very well could have tested negative, even multiple times, before getting a positive blood test that prompted the biopsy.

My nephew tested negative for a few years before finally being diagnosed. His sister was diagnosed as a baby because she has violent vomiting with even a scant exposure. My nephew was just really thin. My sister had him tested every year with his well visits because she suspected a problem.

You just reminded me - one of the reasons my husband doubted the diagnosis was because she never had the biopsy. Her diagnosis was based on blood tests. He's a physician as well.

That is interesting that you can test negative for years before getting a positive - I didn't know that. And it makes sense that it would be affected by what was eaten prior to the blood test.

[Anonymous]

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.

[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.

Ok. I needed to hear that from someone else who has celiac. Thank you.

[Anonymous]

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.

[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.

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