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Living With Gluten-eating Folks. Issues.


Helena

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Helena Contributor

I've been having some issues with gluten-eating family members lately. They try to be supportive, and I have my own gluten-free counter, etc. I'm kind of a pain to live with because in addition to celiac, I have several anaphylactic allergies + other allergies + I've been diagnosed with a latex allergy. I do my own cooking, use my own latex-free gloves to wash my dishes, and have my own gluten-free counter and pots and pans, and cutting board, but I do use their utensils, plates, glasses, containers, etc.

So my family is making an effort, but some people are getting annoyed with me always looking out for possible avenues for cross contamination . . . especially since I'm not getting symptoms indicative of gluten contamination. . . and they are trying to be *so* careful.

I have been more in high-anxiety mode lately because a sibling has been home for a week, and one of her main staples is soy to which I'm anaphylactic. She asked me if I'm okay with her cooking with soy (as opposed to her just drinking soy milk), and I am fine with it. But I still look out for possible avenues of x-contamination and get anxious about working in the kitchen at the same time when she is making a tofu stir-fry.

When she was home at Christmas, she got kind of ticked when I objected to her touching the tap after handling cookie dough. (I didn't totally freak out, but my reaction wasn't subtle either: "Arrghh! Wash your hands!" She tries to remember to wash her hands now, but she isn't always conscious of x-contamination issues and doesn't seem to take it seriously so I get a bit nervous.)

The other day, I was unsuccessfully trying to open something with scissors, and when my mom put my scissors down on a non-gluten free counter, she got the "arghh!" reaction which she's getting tired of. I admit--I shouldn't have said anything that time because the counter upon inspection was totally clean and even if it weren't I could have just cleaned off the scissors. She got the "argh!" reaction again when I was in the kitchen while my sister was cooking with tofu (I'm anaphylactic to soy)+ my sister and mom were toasting bread and my mom touched one of my dishes. That might have been over the top, too. As it turned out, she had washed her hands and hadn't touched either the soy or the bread. (Just giving the context here. . . .I do understand how I can get annoying, but I feel that some anxiety is understandable in my situation.)

I should probably pick my battles.

Anyhow, I was wondering whether any of you think that the following is over the top:

1) a request that no one handle any food, dishes, or containers of mine after they've used handcream with oat flour or ingredients containing wheat germ, etc.

2) a request that family members use gluten-free handcream

3) my objection to someone rinsing their glasses off and then wiping them on the dish towel. (okay, my objections to this aren't all related to gluten! but if there is gluten in her makeup, it could get on the towel? But maybe I should be using a separate towel anyhow.)

4) asking people to avoid shaking spices into food which is being stir-fried. (I ask that they shake some spices onto their hand and then add it that way in case gluten or soy or something gets into the spices.) This one might be overly-paranoid. I'm really not sure.


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lfij Newbie

you need to have a sit down with everyone who lives in your house, and post a "rule" sheet on your fridge. if they love you, they'll be more cautious. there is no reason ANYONE in your kitchen should be using real flour, that is something that at home should/can be subbed with gluten-free stuff, theres really no dif. There should be NO pancake mix or cake mix used, thats just inconsiderate of them, it could make you really sick. You do use your own toaster right? you have your own butter etc, labeled seperate in the fridge? They need to take you serious, and if you have an anaphalatic reaction to anything, they need to GET IT OUT of the house, that is rather ridiculous. There should be no soy if you are soooo allergic to it, thats really rude of whoever even asked! TAKE care of YOU first.

RiceGuy Collaborator

Well. I don't think you're paranoid or being too careful. If you don't know they washed their hands, then you do need to at the very least ask to make sure.

About the hand cream; plain coconut oil is a great skin cream, and of course it's totally gluten-free.

I'd have separate towels, containers, spices, etc. I'd be too worried about CC to share spices, much less a towel, and no way for food containers and kitchen utensils.

So either I'm more paranoid than you, or it's just watching out for ourselves the best we know how. I ask myself what anyone would do if they knew a deadly virus or poison was on the kitchen counter. Just how much cleaning do you think that person would do? Or would they want to go to the hospital for an operation, knowing the scalpels and such aren't sterilized? Looking clean and actually BEING clean are two different things. To a celiac, gluten is as a virus.

Just my two cents...

jerseyangel Proficient
Anyhow, I was wondering whether any of you think that the following is over the top:

1) a request that no one handle any food, dishes, or containers of mine after they've used handcream with oat flour or ingredients containing wheat germ, etc.

2) a request that family members use gluten-free handcream

3) my objection to someone rinsing their glasses off and then wiping them on the dish towel. (okay, my objections to this aren't all related to gluten! but if there is gluten in her makeup, it could get on the towel? But maybe I should be using a separate towel anyhow.)

4) asking people to avoid shaking spices into food which is being stir-fried. (I ask that they shake some spices onto their hand and then add it that way in case gluten or soy or something gets into the spices.) This one might be overly-paranoid. I'm really not sure.

Hi Helena,

I don't think any of these are unreasonable :)

Especially the hand cream! There are so many gluten-free ones out there.

Under the circumstances, it probably would be a good idea for you to have your own kitchen towel.

chrissy Collaborator

i don't mean to be judgemental of your family, especially since it sounds like they are really trying----but i think that if you are anaphylactic to something i don't think that it is unreasonable to want your family to not even bring those substances in the house----especially someone who is visiting and doesn't live there on a regular basis.

here is my opinion (remember it's JUST my opinion). i'd let the towel thing go----just use your own towel and get a new one everytime you need one if you don't trust them to remember----it's just laundry. i think that the spice thing could be let go, too. i guess i don't see the difference in shaking the spices directly into the food or into the hand? keep your own stash of spices.

how old are you? if you are old enough to live on your own and it is finacially feasable, maybe now would be a good time to take that step. if this is not an option, scratch that idea.

Helena Contributor

Thanks for the suggestions, everyone. If I feel strongly about something, I might initially get eye-rolling on some things from some people, but my family will accomodate me. i.e. though she thought my request was "ridiculous" my sister said she would wipe her glasses on the hand towel in the kitchen instead (which I don't use).

What bothers me is that I don't feel comfortable pointing out all possible avenues of cross-contamination because people get annoyed . . . so I let some things go (like the oat-flour containing handcream. I've hinted that it could be a problem, but until today didn't ask them to get rid of it.) It does really help to check to see what you guys think. I'm definitely putting my foot down on the handcream issue now.

lfij,

Yeah, a gluten-free kitchen would be ideal. But I've come to the decision that I can live with extremely careful gluten eaters if needs be. I don't actually eat toast . . . so the toaster isn't an issue. I do have my own butter (which my parents use sometimes when cooking, but they use a clean knife).

lfij and chrissy,

Our house is nut and egg free . . . but I wouldn't ask my sister to eliminate soy because she is severely allergic to dairy + has multiple food allergies as well. I'd be in trouble if I had to elminate dairy from my diet. . . so I don't expect her to eliminate soy from hers. She wouldn't really mind just sticking to drinking soy milk but not having tofu stir fries when visiting the family home, but I assured her that I'm okay with her cooking tofu . . . just as long as my food isn't anywhere near the skillet at the time!

jerseyangel and RiceGuy, It is of some comfort that none of you think I'm paranoid. or at least not in regards to gluten issues LOL!

coconut oil *sounds* like a great idea . . . but I actually have started to react to coconut. And my one sister had a serious reaction to fresh coconut (itchy mouth/ throat + vomiting if I'm remembering this correctly). I don't go out of my way to avoid coconut oil, but I probably wouldn't put it on my skin every day in case I sensitize myself further to coconut. (After using a sesame seed oil cream on my face for a period of time, I tested *majorly* allergic to sesame on a skin prick test . . . so I think that you can be sensitized through the skin.)

chrissy,

What I was thinking of in terms of the spices is that spices that are shaken too close to a steaming stir-fry might splatter a bit and tiny bits of gluten/soy laden oil might get in there.

And yes, i'm way too old to be living at home. I was out on my own for . . . I guess it was about 7 years, but I'm still in school, and my funding has run out so I moved back home this past fall. My degree will be finished this coming fall, and then i'll be looking for work.

I should probably get my own towel. The issue isn't so much having to do a bit more laundry as the fact that there's literally no place in the kitchen to hang it. I would have to put it on a towel rack in a bedroom or something.

NoGluGirl Contributor
Thanks for the suggestions, everyone. If I feel strongly about something, I might initially get eye-rolling on some things from some people, but my family will accomodate me. i.e. though she thought my request was "ridiculous" my sister said she would wipe her glasses on the hand towel in the kitchen instead (which I don't use).

What bothers me is that I don't feel comfortable pointing out all possible avenues of cross-contamination because people get annoyed . . . so I let some things go (like the oat-flour containing handcream. I've hinted that it could be a problem, but until today didn't ask them to get rid of it.) It does really help to check to see what you guys think. I'm definitely putting my foot down on the handcream issue now.

lfij,

Yeah, a gluten-free kitchen would be ideal. But I've come to the decision that I can live with extremely careful gluten eaters if needs be. I don't actually eat toast . . . so the toaster isn't an issue. I do have my own butter (which my parents use sometimes when cooking, but they use a clean knife).

lfij and chrissy,

Our house is nut and egg free . . . but I wouldn't ask my sister to eliminate soy because she is severely allergic to dairy + has multiple food allergies as well. I'd be in trouble if I had to elminate dairy from my diet. . . so I don't expect her to eliminate soy from hers. She wouldn't really mind just sticking to drinking soy milk but not having tofu stir fries when visiting the family home, but I assured her that I'm okay with her cooking tofu . . . just as long as my food isn't anywhere near the skillet at the time!

jerseyangel and RiceGuy, It is of some comfort that none of you think I'm paranoid. or at least not in regards to gluten issues LOL!

coconut oil *sounds* like a great idea . . . but I actually have started to react to coconut. And my one sister had a serious reaction to fresh coconut (itchy mouth/ throat + vomiting if I'm remembering this correctly). I don't go out of my way to avoid coconut oil, but I probably wouldn't put it on my skin every day in case I sensitize myself further to coconut. (After using a sesame seed oil cream on my face for a period of time, I tested *majorly* allergic to sesame on a skin prick test . . . so I think that you can be sensitized through the skin.)

chrissy,

What I was thinking of in terms of the spices is that spices that are shaken too close to a steaming stir-fry might splatter a bit and tiny bits of gluten/soy laden oil might get in there.

And yes, i'm way too old to be living at home. I was out on my own for . . . I guess it was about 7 years, but I'm still in school, and my funding has run out so I moved back home this past fall. My degree will be finished this coming fall, and then i'll be looking for work.

I should probably get my own towel. The issue isn't so much having to do a bit more laundry as the fact that there's literally no place in the kitchen to hang it. I would have to put it on a towel rack in a bedroom or something.

Dear Helena,

I am stuck living at home against my will as well. My family is not good about respecting the protocol for the food allergies. Having Celiac sucks. Everything is a source of cc! No matter what you do, there are always contaminants lying around! You have to obsessively clean and police everything.

You are not being paranoid. I have a violent reaction, so I never cheat. However, I have been glutened by lazy family members. It makes me so angry! Even worse, my parents pretty much refuse to believe I have Celiac. They always have steered me wrong in the past on health issues, and have done absolutely no medical research. My doctor called me a Celiac, and yet that is not good enough for them. However, years ago when they said I was just crazy, they believed that right away and were more than willing to stick me into counseling I did not need and dope me up on anti-depressants.

Your family should be more considerate, especially considering the deadly reaction you have. Also, your doctor should have given you an EpiPen. That should be with you at all times! Otherwise, you could die within five minutes! I cannot believe you do not have one.

Sincerely,

NoGluGirl


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Helena Contributor

Noglugirl, Sorry to hear about your home situation. That sounds difficult. Would it help do you think to get a dr's note and give them some literature on celiac?

I wouldn't exactly say that I'm stuck here against my will. I'm mooching after all. And I'm very grateful that my parents took me back . .. they were glad to have me back. Can't say the same for all of my belongings LOL! We crammed everything in somehow. It is hard to be back home after being out on my own in some ways, but in others it is nice. I'm happy to be back in my hometown . . . I have friends here and extended family.

No worries about the epipens---I have more than one! And I know how to use them. Everyone is actually really good with the allergy situation. They all know how serious it is (especially after seeing me in the hospital on oxygen once with my face all swollen). It's just that I think it seems to them that gluten contamination isn't as big of an issue as, say, peanut contamination. . . and the celiac disease issue is fairly recent for me. They totally believe that I have celiac . . . and they are trying to avoid crumbs, etc., but they sometimes think that the extent to which I avoid cross contamination seems a little extreme.

Nantzie Collaborator
I should probably get my own towel. The issue isn't so much having to do a bit more laundry as the fact that there's literally no place in the kitchen to hang it. I would have to put it on a towel rack in a bedroom or something.

Get one of those Command Adhesive hooks for your towel. They stick to just about anything and when you remove the adhesive you'd never even know it was there. I used one to hang my towel up on the side of the cabinet next to the kitchen sink at our old house. It works well because you don't have to worry about someone glutening it accidentally.

Nancy

chocolatelover Contributor

It is hard, isn't it? I try really hard not to wig out whenever someone sticks their crumbly knife back into the butter or the peanut butter, or cuts their bread and leaves crumbs everywhere (trying to stock up on my own items so that doesn't happen). I really want ot scream at them, but I don't think it's fair. On the other hand, if I don't get it into their heads NOW, from the beginning, it's only going to get worse. I just don't know how far to carry this--it's my life, my body, my future, but I also don't want it to cripple me to the extent that it's going to drive a wedge between me and my family.

I think the separate towel is a good idea, or else just use paper towels every time so you don't ever have to touch one that someone else has touched, and they don't have to worry about if they've touched it or not. As for the hand cream, go out and buy some for the entire family that is safe for all of you--it's just too much of a risk!

I feel your frustration--between your allergies and your sister's, it must be very challenging to cook anything at all! It does sound like they're trying to understand, but celiac has added a whole new level to your life that might just be putting them over the edge. Give it some time, set some ground rules so they know just how important it is, and hopefully the situation will improve.

NoGluGirl Contributor
Noglugirl, Sorry to hear about your home situation. That sounds difficult. Would it help do you think to get a dr's note and give them some literature on celiac?

I wouldn't exactly say that I'm stuck here against my will. I'm mooching after all. And I'm very grateful that my parents took me back . .. they were glad to have me back. Can't say the same for all of my belongings LOL! We crammed everything in somehow. It is hard to be back home after being out on my own in some ways, but in others it is nice. I'm happy to be back in my hometown . . . I have friends here and extended family.

No worries about the epipens---I have more than one! And I know how to use them. Everyone is actually really good with the allergy situation. They all know how serious it is (especially after seeing me in the hospital on oxygen once with my face all swollen). It's just that I think it seems to them that gluten contamination isn't as big of an issue as, say, peanut contamination. . . and the celiac disease issue is fairly recent for me. They totally believe that I have celiac . . . and they are trying to avoid crumbs, etc., but they sometimes think that the extent to which I avoid cross contamination seems a little extreme.

Dear Helena,

I kind of wonder if it might be a guilt thing. However, it appears to be more of a denial thing. I think they do not want to admit I have the disease, because it is genetic. That means one or both of them could have it. You see, we have Irish on both sides! I wanted to go see the doctor to discuss the seriousness of the disease with my mother. However, I had to cancel because they said we could not afford it. I sort of wonder if they do not like to acknowledge the seriousness because they might feel guilty that they gave it to me? People act strangely about things when their feelings are bothering them. Most of the time, I just feel that they do not believe me and are being insensitive, though.

It is so funny about the furniture and stuff! :lol: Our entire house is loaded! We are lucky to walk!

I think that adds to the tension. I believe in feng shui. Our house has bad feng shui with all of this stuff everywhere!

Another buddy of mine on here has horrific reactions to foods like that! Her face swells and all kinds of awful stuff. Rachel's are caused by things as simple as a carrot. She cannot tolerate fungus in any form, and it is naturally present in just about everything. Thank goodness you have epipens! Those things are essential for people who have dangerous allergies. Don't worry, though, you are not being extreme about crumbs. I am pretty well paranoid. You have to be to avoid it. Last week, I got glutened from the Diet Rite! You know why? My Dad never watches where he puts the lid while pouring some, so I got sick from crumbs I could not even see! :(

Sincerely,

NoGluGirl

sfm Apprentice
Dear Helena,

I am stuck living at home against my will as well. My family is not good about respecting the protocol for the food allergies. Having Celiac sucks. Everything is a source of cc! No matter what you do, there are always contaminants lying around! You have to obsessively clean and police everything.

You are not being paranoid. I have a violent reaction, so I never cheat. However, I have been glutened by lazy family members. It makes me so angry! Even worse, my parents pretty much refuse to believe I have Celiac. They always have steered me wrong in the past on health issues, and have done absolutely no medical research. My doctor called me a Celiac, and yet that is not good enough for them. However, years ago when they said I was just crazy, they believed that right away and were more than willing to stick me into counseling I did not need and dope me up on anti-depressants.

Your family should be more considerate, especially considering the deadly reaction you have. Also, your doctor should have given you an EpiPen. That should be with you at all times! Otherwise, you could die within five minutes! I cannot believe you do not have one.

Sincerely,

NoGluGirl

NoGluGirl - I'm just wondering - why are you at home "against your will"?

Sheryll

Helena Contributor

Nancy--thanks for the idea. Don't think my mom will go for it, though . . . she won't want me to stick anything on the new cupboards. I've been sticking a towel in a dish in my gluten free cupboard . . . and changing it frequently.

It is hard, isn't it? I try really hard not to wig out whenever someone sticks their crumbly knife back into the butter or the peanut butter, or cuts their bread and leaves crumbs everywhere (trying to stock up on my own items so that doesn't happen). I really want ot scream at them, but I don't think it's fair. On the other hand, if I don't get it into their heads NOW, from the beginning, it's only going to get worse. I just don't know how far to carry this--it's my life, my body, my future, but I also don't want it to cripple me to the extent that it's going to drive a wedge between me and my family.

I think the separate towel is a good idea, or else just use paper towels every time so you don't ever have to touch one that someone else has touched, and they don't have to worry about if they've touched it or not. As for the hand cream, go out and buy some for the entire family that is safe for all of you--it's just too much of a risk!

I feel your frustration--between your allergies and your sister's, it must be very challenging to cook anything at all! It does sound like they're trying to understand, but celiac has added a whole new level to your life that might just be putting them over the edge. Give it some time, set some ground rules so they know just how important it is, and hopefully the situation will improve.

Crumbs in the butter! Yikes. Blatant crumbs are definitely not good!

I think you really put your finger on the problem when you suggested that celiac disease is just putting them over the edge. There have been a lot of new restrictions to deal with lately---i.e. I've known that I'm allergic to corn for a long time, but I just got officially diagnosed with a corn allergy this past summer and am now trying to avoid corn-derived ingredients as much as possible. And the latex allergy was even more recently diagnosed.

After our difficulties last week, my mom has been trying extra hard to be accomodating. i.e. today she reminded my father to wash his hands after eating crackers and a toasted cheese sandwich. My father tends to be absent minded (which I can relate to. same genes.), so it is good that my mom reminded him without me having to. The oat-flour containing handcream seems to have disappeared . . .not sure where it went to. I'll have to ask to make sure that it is gone. (Which reminds me. I haven't actually called the manufacturer to check to see if my handcream is gluten free. Ooops. I never apply it before working in the kitchen, though, and always wash my hands before preparing my food.)

Good luck with dealing with your family! I do think that dealing with it in the beginning is the best way to go (although I haven't entirely been following my own advice.)

What really did help me adjust to moving back home was having some literature to hand out. My dietician gave me some basic written instructions on avoiding cross contamination in the kitchen. i.e. getting rid of non-stick pans, cast iron pans, wooden cutting boards, wooden spoons, etc. that have been previously used with gluten products. She suggested that there be a gluten-free counter and that I store my food in a gluten-free cupboard. I have a gluten-free utensil drawer as well. The instructions weren't so detailed as to cover hand cream issues, however!

There is one marked advantage for my parents with the new arrangement (although I have taken up a lot of their space!) My mom says that we work better in the kitchen together now that I have my own drawer and cupboard, etc. I used to use more than one counter at the same time and always be runnng into her (literally!), but now that I have the one assigned counter, I'm more contained. :lol:

chocolatelover Contributor

You know, Helena, I keep wondering to what extent I need to go with the new utensils, pans, cutting boards, etc. I've read anectdotally often that this needs to happen, that gluten sticks to everything, but I've never actually seen any research to suggest that it does. I'm not doubting anyone, I'm just wondering aloud about the cross contamination issues--it's probably my biggest concern right now. It seems so extreme, but then again, maybe that's why my D hasn't yet cleared up--maybe I'm contaminating myself and I should get all new stuff tomorrow. I think in a sense I'm still in denial about some of this! It's all very new and still a bit overwhelming. I haven't yet called about my makeup, have been using the same pans...perhaps it's time I take a complete inventory to make sure I've eliminated every possible source of gluten there could be.

I'm very lucky in that my husband is totally supportive with whatever I want to do--if I want the entire house gluten free, then that's what we'll do. The kids are young enough that they are pretty good about paying attention (especially my youngest, the self-appointed "butter police" :P ). We are awaiting the results of the kids' Enterolab tests, so we may find we are all gluten free anyway!

Here's a really good question and answer link on the issue that definitely helps. I think I may have to print it out and keep it on my fridge--to remind myself as well as others!

Open Original Shared Link

Good luck to you with your family. It sounds incredibly challenging for you, but it also sounds like your mom is getting into the swing of things. Soon it will hopefully become second nature for all of you!

CL

NoGluGirl Contributor
NoGluGirl - I'm just wondering - why are you at home "against your will"?

Sheryll

Dear Sheryll,

I am stuck here! I am too ill to work, and there is nowhere else to go! :( Getting disability in our state is nearly impossible. They find any reason not to give it for people who are in terrible physical shape. I am tired of living with inconsiderate people. My parents do not take this seriously. They do not feel a crumb could hurt me. It is one thing when you just do not know, but it is another when you refuse to understand.

Sincerely,

NoGluGirl

  • 2 weeks later...
Helena Contributor

Hi chocolatelover,

Thanks for that link---it is very useful to have "official" info. to pass on to friends and family. It is really important to avoid cross contamination---I don't think the recommendations on that page are controversial at all. I did get some of this info. from an "official" source---the dietician my GI doctor referred me to gave me a little booklet written along the same lines.

That is great that your husband and kids are so supportive! Your little "butter police" sounds adorable :)

I hope you can get the D under control by being more vigilant about cc. Let us know how the gluten-elimination mission goes!

annie-is-GF Newbie

It sounds like what your family needs is blunt, up-front honesty about everything. I can understand being annoyed if most of your communication is passive-aggressive (I am the ultimate passive-aggressive person in the world so I have dealt with this with almost all of my friends and family! Yikes...). Instead of doing the "argh"/nagging thing from time to time and letting your own resentment grow, leading to a huge freak-out session, I would take the advice someone else posted on here about sitting down with your family and suggesting clear, basic ground rules. Communicate your fear about getting sick, not just your frustration with your family's ignorance. Explain that all of your nagging is based on very real fear that you will get very sick. Hopefully your family will realize how important this is to you.

In terms of your anaphylaxis, I can't believe that people in your family are still cooking with/using those allergens! It is unbelievable! When I was much younger and in elementary school, we had ONE peanut-allergic kid in the whole place and NO ONE was allowed to bring in any peanut butter or peanut containing products. I really don't think it is unreasonable for your allergens to be banned from the house. In this case it IS a life and death situation! No wonder you are so stressed out!

I hope everything gets sorted out for you :)

NoGluGirl Contributor

Dear Annie,

I tend to be passive-aggressive as well. I just let it all build up and then I explode. It is awful. My family does not take Celiac seriously. They have crumbs everywhere! My mother probably has it, too. She is just not wanting to give up eating out. She says she is not going to let it run her life. She must understand it has to! Everything could make you ill! However, I am just being obsessive to her.

Sincerely,

NoGluGirl

  • 2 weeks later...
Helena Contributor

Hi annie-is-gluten-free!

I haven't been online as much lately--have been busy . . . So my response is kind of late, but I do appreciate the input!

Hmmm . . .passive aggressive. Well, yeah, I guess in relation to food issues and allergies I tend to deal with things kind of indirectly sometimes. . .

Yes, dealing with the issues up front and all at once would be more effective. Although to be honest, I think my mom prefers the indirect approach. My mom does try to be very careful . . . and I think that since my two sisters and I all have anaphylaxis, food preparation has always been anxiety-producing for her. I think she would rather me intimate that an issue needs changed because she will take the hint, but if I say "can you do this mom" upfront, she feels like I'm criticising her or that she has "failed" in some way. But everyone else--yeah, it would be better to make my point strongly and clearly once rather than to have to "nag."

I wouldn't say that tension builds up, though . . .it is more like it emerges when something changes in the eating arrangements. i.e. it hasn't been 100% perfect, but I've gotten more or less comfortable with living with gluten eating parents . . . at the time I posted, I just got highly anxious when my one sister came home to visit for a few days . . . we had some "gluten issues" when she was home at Christmas which resurfaced for me when she came back to visit.

And the "arghh!" reaction tends to be my reaction to a lot of things (and I could tone it down a litte). . . even things aren't gluten related. i.e. the other day my mom put a metal spoon in a gluten-free dish to taste it. It was clean, I always offer her a taste anyway . . .but it was my new fairly expensive non-stick silicone baking dish. You aren't supposed to use metal utensils with silicone---it scratches the surface. Arggh!

But as for the soy----my sister's diet is extremely restricted (for one thing, no dairy . . .but she has a long list of allergens), so even though I'm a bit nervous about the tofu stir-fries, I couldn't ask her to give it up even temporarily. She needs soy for protein and calcium.

I do agree though that in general it is safest to keep severe allergens out of the house, but when we have multiple food allergies and aren't allergic to the same things it gets tricky.

Things are improving. My soy-eating sister was home this past weekend, and she let me know that she is washing her hands after eating toast, etc. . . a good sign!

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    • knitty kitty
      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
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