Significant Other To Celiac

[tinydani]

Hey everyone, I am new to celiac.com but not new with celiac disease. I have been dating my boyfriend of 1.5 year(s) and he has celiac disease. At first I did not at all understand the seriousness of this disease, so he was sick all the time from cross contamination and he wasn't as serious as he is now about being gluten free. Over time we have taken steps and precautions to avoid cross contamination. I know I do not have this disease, but being a significant other and trying to be supportive is pretty difficult at times. Celiac disease obviously limits the places we can go to eat and the things we can do and I just want to know how other celiacs go about travel, and doing activities?

I have changed my diet to a completley gluten free diet as we live together, and i clean the house at least once a week with vinegar to kill most of the gluten particles, he is that sensitive. I just feel right now he is letting his disease define him and monitor the things he does in his life and I think celiac disease has killed his spontaneity and I just want to help him and have fun and do "normal" things that other couples do for the most part.

 

I think I really phrased this wrong earlier so I edited. Thanks for tips!

[kareng]

I think it gets better as you get your procedures/habits worked out.  Don't try to make a gluten food at the same time as a gluten-free food - its too stressful and difficult.  Might be easiest just to not have any gluten food in the house he lives in.

 

There are lots of things you can do that are not going out to dinner.  You just have to be creative.  Here are some ideas:

 

golf

golf driving range

min-golf

fishing

zoo

picnics (bring your gluten-free foods)

bowling

movie theater

find places to listen to music or see plays  - outdoor concerts, churches, colleges, high schools, coffee shops, jazz ":clubs"

go out for coffee/tea

go out for ice cream - Dairy Queen, Wendy's Frosty, TCBY, etc

hikes

walks in the park

shopping/window shopping

art galleries

museums

art fairs

 

 

Use the google function at the top right of the main forum page and use the word travel.  We have lots of travel discussions on here.

[NateJ]

Its disheartening to hear this from a s/o but totally understandable.

I can't imagine the level of frustartion and annoyance from someone not celiac or gluten intolerant.

I liken it to dating or being married to a recovering alcoholic maybe, but still wanting to drink and socialize in bars, etc.

I guess the real heart of the matter here is if you care about him enough to make the sacrfices and lifestyle changes necessary to keep him healthy. If not, then don't waste each others time. Sounds blunt but its the truth.

 

I know from expereince with my daughter, that she is not willing to do this and has told me on numerous occassions how annoying and aggravating my condition is.

[howlnmad]

Wow, slow down a bit. First let me say that I don't but my wife does. It is possible to coexist and still live normal (someone needs to define that word) life. Your boyfriend needs to be searching for gluten-free places to eat or you can do it. He needs to put together a "go bag" with snacks, drinks and gluten-free stuff that he can bring along on road trips. We travel quite a bit and she hasn't starved yet. For long trips, pack a cooler for him.

As for the home, that takes a bit more control. Get rid of or seperate anything that may be CC. Ie, plastic containers, wooden utensils and anything porous. Glass and stainless or NEW plastics are your friends. Most of the gluten-free foods we prepare are just as good as those with gluten. On pasta nights, she makes hers then makes mine. Not that much trouble cuz we still share the same sauces. She has her own breads and lunchmeat and I have mine. The big thing is to have a spot in the kitchen where you can prep stuff and have a seperate cutting board and utensils. I kept the old nonstick pans for my use along with the o lol d wooden stuff. Clean up your area when done and remember to wash your hands.

Trust me, it's doable. I haven't killed her yet. I have zapped her a couple times early on (sorry sweetheart) but I'm getting better at paying attention to what I'm doing and how it may affect her. I get upset at times but it's at me for being stupid and noy thinking.

Just saying, don't give up yet, there's lots of support right here.

[nvsmom]

Celiac disease does limit where you can eat out, without eating greens drizzled in oil every time, but that's about it. there are hundreds of other things you could do together. Travel isn't hard as long as you get a kitchen in your room - it requires a bit of effort but thst's it.

 

I think the effort is the problem here. It sounds like he, you, or both, are not putting in the effort to make other activities possible. If you want to go out, you'll have to make it happen... and don't hint at it because I think men are blind to hints.    LOL

 

Good luck. i hope you both get out and enjoy summer.

[Adalaide]

I'm just going to be repeating, but I'm going to say it anyway. There is no reason for celiac to limit what you can and can't do other than your choice of restaurants. It may involve slightly more planning ahead, but that isn't the same as not being able to do things. If you keep a list of restaurants handy, and a go bag you don't even have to entirely give up the spontaneity. Just trying to think of the things around here we can do there are movies, a nicklecade, parks for picnics or long walks, mini-golf and go-karts. We have a zoo, planetarium, aquarium, museums and historical sites. And because it is summer one of my favorite things to do is go out for ice cream.

 

Last week we had a date night I guess... we went to the evening farmer's market. My husband got a waffle from the local waffle food truck, he said it was pretty amazing. I got a whole bag of produce. We walked around, looked at lots of things. Almost bought some shaved ice, then ordered pizza and came home. Maybe we're especially boring people, but we had a good time, and spent some time out of the house together. You don't need grand plans, just planning and doing plenty of little things will take the "we never do anything" edge off.

[bartfull]

I'm going to be blunt. If you had a disease, let's say asthma, and he thought it was too "hard" to give up smoking around you or wearing his favorite cologne, if he found it difficult to plan activities for fear you might be exposed to perfumes or smoke, or pollen, or whatever else triggered you asthma, if he thought your relationship were BORING because of your limitations, would you still want to be in a relationship with this guy?

 

I think (as I said, I'm going to be blunt) you should let him go so he will have a chance to find someone who cares abut HIM rather than the "fun activities" you feel you are missing out on. And I hope you never find yourself in the position of being sick and having someone you care about think you're so boring that he just "can't take it".

[tinydani]

Its disheartening to hear this from a s/o but totally understandable.

I can't imagine the level of frustartion and annoyance from someone not celiac or gluten intolerant.

I liken it to dating or being married to a recovering alcoholic maybe, but still wanting to drink and socialize in bars, etc.

I guess the real heart of the matter here is if you care about him enough to make the sacrfices and lifestyle changes necessary to keep him healthy. If not, then don't waste each others time. Sounds blunt but its the truth.

 

I know from expereince with my daughter, that she is not willing to do this and has told me on numerous occassions how annoying and aggravating my condition is.

I have adopted a gluten free diet and i am lactose intolerant so we have been getting creative with food and thats been fine but lately he is just letting his disease rule over him hence we dont go anywhere and i mean its understandable because its a fear of getting sick but when all you do is go to work and be home... its not living and i cant handle being a slave to the american economy and not doing anything fun. what fun things do celiacs do that they do not get sick from and are inexpensive?

[tinydani]

I'm going to be blunt. If you had a disease, let's say asthma, and he thought it was too "hard" to give up smoking around you or wearing his favorite cologne, if he found it difficult to plan activities for fear you might be exposed to perfumes or smoke, or pollen, or whatever else triggered you asthma, if he thought your relationship were BORING because of your limitations, would you still want to be in a relationship with this guy?

 

I think (as I said, I'm going to be blunt) you should let him go so he will have a chance to find someone who cares abut HIM rather than the "fun activities" you feel you are missing out on. And I hope you never find yourself in the position of being sick and having someone you care about think you're so boring that he just "can't take it".

Pretty sure you are misunderstanding me. I have changed my diet so he never gets sick, i sanitize the whole house with vinegar once a week to kill all gluten particles so he doesnt get sick, and asthma and celias disease are way completley different things in severity, so all i was asking dr.phil were activities celiacs do because he is letting his disease define him and the fear of getting sick is keeping him and I from enjoying activities together. so your bluntness was irrelevant. thank you.

[tinydani]

I'm just going to be repeating, but I'm going to say it anyway. There is no reason for celiac to limit what you can and can't do other than your choice of restaurants. It may involve slightly more planning ahead, but that isn't the same as not being able to do things. If you keep a list of restaurants handy, and a go bag you don't even have to entirely give up the spontaneity. Just trying to think of the things around here we can do there are movies, a nicklecade, parks for picnics or long walks, mini-golf and go-karts. We have a zoo, planetarium, aquarium, museums and historical sites. And because it is summer one of my favorite things to do is go out for ice cream.

 

Last week we had a date night I guess... we went to the evening farmer's market. My husband got a waffle from the local waffle food truck, he said it was pretty amazing. I got a whole bag of produce. We walked around, looked at lots of things. Almost bought some shaved ice, then ordered pizza and came home. Maybe we're especially boring people, but we had a good time, and spent some time out of the house together. You don't need grand plans, just planning and doing plenty of little things will take the "we never do anything"

is it you that is celiac? if so do you get sick from cross contamination from your husband kissing you after he ate a waffle and from ordering pizza?

[kareng]

I have adopted a gluten free diet and i am lactose intolerant so we have been getting creative with food and thats been fine but lately he is just letting his disease rule over him hence we dont go anywhere and i mean its understandable because its a fear of getting sick but when all you do is go to work and be home... its not living and i cant handle being a slave to the american economy and not doing anything fun. what fun things do celiacs do that they do not get sick from and are inexpensive?

I think I listed a few things. You can look around where you live. Go to fairs, outdoor or indoor free music events.

If you were going to spend $20 to eat out, use it to go bowling instead or hit a bucket of golf balls.

High schools and colleges have concerts, sports events, plays, etc often pretty cheap. Eat before you go.

Go to the park - ride bikes, throw frisbees, walk, skip stones, fish, swing on the swings, etc.

Volunteer at an animal shelter if you like animals. A couple of 4 hour shifts on the weekends walking dogs could be fun.

Many areas have " destination stores". Big stores that are worth the trip and great for browsing - Bass, Cabelas, Nebraska Furniture mart, Ikea, Camping World, etc.

Eat then go to the bar and get a drink with friends or watch the game.

Try things you might not have normally done. You might find you both enjoy playing frisbee or following the high school football team.

[notme]

we go EVERYWHERE and WE DO WHAT WE WANT!!  lolz - sometimes it's a pain (stuck in the airport in el paso with just a turkey sandwich with mayo - it's hot, i'm worried about the Only Thing I Have To Eat getting spoiled so i got a cup of ice and jammed the sammich into the cup - still wrapped - did just fine.  worried more than i needed to!)  my husband is wonderful in helping me to do all these things but i really think he did his 'hard time'  when i was undiagnosed for 20+ years.  talk about sick all the time!  

 

so, tinydani, where will he not go?  maybe we can set up a game plan

[Adalaide]

is it you that is celiac? if so do you get sick from cross contamination from your husband kissing you after he ate a waffle and from ordering pizza?

 

Yes, I have celiac. I make my husband brush his teeth before he gets all kissy on me if he has been eating gluten. So he didn't kiss me after he ate his waffle. So what? And we just ordered separate pizzas. I have a place I can go to get pizza, more than one locally in fact. He has his two favorite places, which aren't mine. I picked up my pizza, he picked up his and we brought them home to eat.

 

We do whatever we want, which is in general all of the same activities we did before I was diagnosed. Actually even more now because I am healthier and more able to do things now than I was a few years ago. Of course I am not going out to eat at places like Kneaders, and I'm not going to go to a bread bakers convention or something. But besides some super obvious derp things, I don't restrict my activities at all based on the fact that I have some stupid disease. Other than what he is putting into his mouth there is no reason to restrict activities.

[tinydani]

we go EVERYWHERE and WE DO WHAT WE WANT!!  lolz - sometimes it's a pain (stuck in the airport in el paso with just a turkey sandwich with mayo - it's hot, i'm worried about the Only Thing I Have To Eat getting spoiled so i got a cup of ice and jammed the sammich into the cup - still wrapped - did just fine.  worried more than i needed to!)  my husband is wonderful in helping me to do all these things but i really think he did his 'hard time'  when i was undiagnosed for 20+ years.  talk about sick all the time!  

 

so, tinydani, where will he not go?  maybe we can set up a game plan

He willnot go get a drink, he knows that bartenders put straws in drinks and those straws are touched by gluteny hands and its like he is embarrassed he has celiac he wont tell them to not put a straw in it, he will not get coffee because of a similar situation and also alot of coffee syrups have caramel coloring and that makes him sick, and I think it is what someone on hear said previously its a lack of effort. I always want to do things and he either is to tired from work or just doesnt want to go. How do I get him out of his celiafunk?

[Adalaide]

He willnot go get a drink, he knows that bartenders put straws in drinks and those straws are touched by gluteny hands and its like he is embarrassed he has celiac he wont tell them to not put a straw in it, he will not get coffee because of a similar situation and also alot of coffee syrups have caramel coloring and that makes him sick, and I think it is what someone on hear said previously its a lack of effort. I always want to do things and he either is to tired from work or just doesnt want to go. How do I get him out of his celiafunk?

 

Suggest things that don't involve food? And try planning things on his days off? I know that I don't try to make plans on days that my husband works, even if it is a short shift. He works hard and I don't want to put more on him on an already hard day.

[kareng]

Maybe that is just how he is? Some people aren't big on going out and doing things. If that doesn't work for you, maybe you should re- think the relationship. I'm assuming you have had calm discussions about this and explained your thoughts. If he doesn't want to do anything, you can't make him. His reasons not to get coffee or a drink, etc aren't really valid. Carmel color doesn't contain gluten, but he could get a plain coffee or a an iced tea. I don't understand the straw thing. Find a place with cider or gluten-free beer in bottles. Drink it from the bottle. Not sure a bartenders hands will be very gluteny.

It just sounds like he might not be interested in going out?

[tinydani]

Suggest things that don't involve food? And try planning things on his days off? I know that I don't try to make plans on days that my husband works, even if it is a short shift. He works hard and I don't want to put more on him on an already hard day.

well we are on opposite schedules he works mon-fri 7-330 and i work thurs-sun usually nights or all day so its been really tricking finding time

[NateJ]

I have adopted a gluten free diet and i am lactose intolerant so we have been getting creative with food and thats been fine but lately he is just letting his disease rule over him hence we dont go anywhere and i mean its understandable because its a fear of getting sick but when all you do is go to work and be home... its not living and i cant handle being a slave to the american economy and not doing anything fun. what fun things do celiacs do that they do not get sick from and are inexpensive?

well the fact your here means you care at least somewhat to be looking for help or answers. Maybe someone else can explain it better than I can.

I did some digging because I remembered someone wrote this before. Its about the best explanation I can find.

 

Open Original Shared Link

 

Hopefully the link works. Its a story about someone that has celiac disease and what their significant other means to their struggle.

Everyone needs support, and no relationship is perfect. You have to be willing to work on it every day you are togehter.

[bartfull]

"I have changed my diet to a completley gluten free diet as we live together, and i clean the house at least once a week with vinegar to kill most of the gluten particles, he is that sensitive. I just feel right now he is letting his disease define him and monitor the things he does in his life and I think celiac disease has killed his spontaneity and I just want to help him and have fun and do "normal" things that other couples do for the most part."

 

If you have gone completely gluten-free, what gluten particles do you have to clean once a week? (And vinegar won't "kill" gluten particles any better than soap anyway.)

 

How long has he had celiac? If he is new to it it is understandable that he is nervous about anyone else preparing his food or drink. We have given you plenty of suggestions about fun things to do that don't involve food or drink at all. Eat first, bring bottled water, and go do something.

[howlnmad]

He willnot go get a drink, he knows that bartenders put straws in drinks and those straws are touched by gluteny hands and its like he is embarrassed he has celiac he wont tell them to not put a straw in it, he will not get coffee because of a similar situation and also alot of coffee syrups have caramel coloring and that makes him sick, and I think it is what someone on hear said previously its a lack of effort. I always want to do things and he either is to tired from work or just doesnt want to go. How do I get him out of his celiafunk?

 

You know what's in plastic? PLASTIC! You want to go to the bar and get a drink but he's worried about gluten hands touching the straw? Easy fix.............................. bring his own. Better yet, go get one of those "Krazy Straws" and bring it with him. He'll be the life of the party. Hell, I'd probably buy a round just to watch.

 

Coffee is over rated. It keeps you awake sometimes, makes you jumpy (like the stressed out dwarf) and stains your teeth. Just kidding, I drink about 4 gallons a week and there is nothing wrong with me.

 

 

 

Right honey?

[tinydani]

"I have changed my diet to a completley gluten free diet as we live together, and i clean the house at least once a week with vinegar to kill most of the gluten particles, he is that sensitive. I just feel right now he is letting his disease define him and monitor the things he does in his life and I think celiac disease has killed his spontaneity and I just want to help him and have fun and do "normal" things that other couples do for the most part."

 

If you have gone completely gluten-free, what gluten particles do you have to clean once a week? (And vinegar won't "kill" gluten particles any better than soap anyway.)

 

How long has he had celiac? If he is new to it it is understandable that he is nervous about anyone else preparing his food or drink. We have given you plenty of suggestions about fun things to do that don't involve food or drink at all. Eat first, bring bottled water, and go do something.

when you go to the store and bring things home other peoples gluteny hands have touched that package and now its on my counter its on my cabinet. https://www.celiac.com/forums/topic/91020-does-anyone-know-how-to-kill-or-inactivate-gluten/

he has had it for years and only really understood the severity of it 3-4 years ago. You havent given me anything but attitude actually, all of these other nice people have given great tips and advice you however have been quite the opposite of helpful and positive. so please keep to yourself because you are not at all helping my situation.

[0range]

Maybe that is just how he is? Some people aren't big on going out and doing things. If that doesn't work for you, maybe you should re- think the relationship. I'm assuming you have had calm discussions about this and explained your thoughts. If he doesn't want to do anything, you can't make him. His reasons not to get coffee or a drink, etc aren't really valid. Carmel color doesn't contain gluten, but he could get a plain coffee or a an iced tea. I don't understand the straw thing. Find a place with cider or gluten-free beer in bottles. Drink it from the bottle. Not sure a bartenders hands will be very gluteny.

It just sounds like he might not be interested in going out?

 

I was going to echo this. Some of us just like to 'lay low' :=) either we're introverts, generally have low energy/get tired easily or a combination of these things. Maybe your boyfriend is one of those people? Is there a fun activity you can do at home? Maybe make cooking an activity. Make some delicious hot chocolate and watch a romantic movie together (if they don't make you cringe ). I'm not very big on going out, but my boyfriend and I usually throw big Halloween or Christmas parties at his place to compensate. You can make all gluten-free food, plan some fun activities (hit the pinata! pin the tail on the donkey!) and just have a good time playing some Rockband, board games, drinking games, etc. 

[kareng]

when you go to the store and bring things home other peoples gluteny hands have touched that package and now its on my counter its on my cabinet. https://www.celiac.com/forums/topic/91020-does-anyone-know-how-to-kill-or-inactivate-gluten/

he has had it for years and only really understood the severity of it 3-4 years ago. You havent given me anything but attitude actually, all of these other nice people have given great tips and advice you however have been quite the opposite of helpful and positive. so please keep to yourself because you are not at all helping my situation.

I guess what several of us have tried to explain, but I'm going to be more blunt here, is : we don't get silly about if someone might have touched a package at the store. Honestly, if this was a real hazard, how would the vast majority of Celiacs have healed? Who walks around a grocery store with lots of bread crumbs all over themselves, touching every package in the store?

As I'm remembering the intent of that thread was getting spilled gluteny flour and such out of your house when you first went gluten free.

[bartfull]

No, Hon, I have not given you "attitude". What I have done is respond to your post honestly. You even went back and edited your original post because you knew that saying he was making your relationship "boring" and that you "couldn't take it" sounded bad. If you look around here at different threads you will find that many of us have had problems with family and friends and spouses who couldn't deal with our illnesses. A lot of us have been hurt by people who supposedly love us, so if I jumped on you, that is why.

 

I don't think there is anyone here who worries about packaging giving us CC. We wash our hands when we cook and we wash our hands before we eat, but other than spilled flour on the checkout counter, I don't think packaging is a big problem. People's gluteny hands touch doorknobs and other surfaces too. We just always wash our hands before putting anything in our mouths. Cleaning with vinnegar though is not any better than just using soap and water. I don't like harsh chemicals so I clean with Dawn dishwashing liquid and water. It does a good job.

[Gemini]

when you go to the store and bring things home other peoples gluteny hands have touched that package and now its on my counter its on my cabinet. https://www.celiac.com/forums/topic/91020-does-anyone-know-how-to-kill-or-inactivate-gluten/

he has had it for years and only really understood the severity of it 3-4 years ago. You havent given me anything but attitude actually, all of these other nice people have given great tips and advice you however have been quite the opposite of helpful and positive. so please keep to yourself because you are not at all helping my situation.

Actually, Bartie gave you some good advice but, apparently, it wasn't what you wanted to hear.  I would suggest that you and your boyfriend spend some quality time at home, reading and learning as much as you can about Celiac Disease from reputable souces like Celiac organizations and people like Dr. Peter Green or Dr. Alessio Fasano...both are leading experts and researchers on Celiac.  From what you have posted so far, you both are woefully uninformed and uneducated on Celiac and this might explain why your boyfriend is afraid to leave the house. If you both learn the real ways in which you might be glutened, and not worry about what everyone else has on their hands on the outside world, things will improve dramatically for you.  Everything you have posted about Celiac and what you need to be wary of is incorrect.  That might be the root of your problems.