Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Significant Other To Celiac
0

49 posts in this topic

i sanitize the whole house with vinegar once a week to kill all gluten particles

Slightly off-topic, but important: gluten can not be "killed"--it can only be physically washed away. If vinegar killed gluten, then salad dressings with wheat would be safe. If alcohol killed gluten, we could all drink regular beer.
3

Share this post


Link to post
Share on other sites


Ads by Google:

Oh.....you have changed what I have been responding to!

FYI- from the thread you are quoting- I never said vinegar " kills" Gluten, it just helps dissolve stuck on flour so you can scrub it off. If your home is gluten-free, there should be no more gluten to destroy.

Now that I see what may be going on here, I'll wish you good luck and good evening.

0

Share this post


Link to post
Share on other sites

You know what is really sad here, this is not only an informative website, a network of like minded people dealing with a serious disease but a support system and shame on some of you for trying to point the finger and put blame on someone. This person is here because they obviously care about their significant other and has not dealt with this before I am sure, and because of your past relationships of people abandoning you, you instead of offering help go the criticism route.

 

I think it is admirable you are on here trying to get advice, and that you have changed your lifestyle to fit his and you are honest about your feelings. Being someone who has celiac, it is hard. And I can only imagine the difficulty significant others feel dealing with being with someone with a serious disease. More people are sensitive than others and by the sound of it, he sounds very very sensitive to gluten, I would not be surprised if he had another intestional problem. Maybe he should go to the doctor if he has not gone recently?

But the point is here, I do not let celiac define me, yeah it sucks seeing people drinking beer and the smell of fresh doughnuts in the air but I would rather be healthy and live longer than be sick and miserable and that is great of you to not want him to be sick from cross contamination since that is the biggest reason why celiacs get sick. For me atleast for sure.

I like to take my dog on walks, either in the woods or on the beach, go out for drinks, shoot some pool, go wine tasting, watch movies, play boardgames, make art, listen to music, go see live shows.

It just sounds like you guys are stuck in a little rut and he is comfortable being home with you and knowing he wont get sick, so try to go about trying to go out in a less direct spontaneous way because maybe that is what is turning him off to it. Im not sure how to go about this but im sure you can find a way.

good luck to you and stay healthy!

0

Share this post


Link to post
Share on other sites

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.

 

I agree with this 100%. You were given completely sound advice. You basically said you were bored with the relationship because you two don't go out and do anything. You didn't elaborate on why that is exactly, only saying that you were blaming celiac. Yes, many here have loving and supportive SOs, and many also have been abandoned and treated poorly by people who just don't have any desire to be understanding. So having someone come in and say basically that celiac makes life boring is going to make us all a little defensive.

 

It has now become clear though that the problem is that both of you are woefully misinformed and ill-educated. The only thing you can do is either educate yourselves about the actual facts of celiac and how to be safe outside the house so that he'll feel comfortable leaving home or, if he is just the kind of person who is more comfortable hanging out at home it is quite possible that you two just aren't suited to each other since you have voiced how miserable this seems to make you.

0

Share this post


Link to post
Share on other sites

AliveAndWell, I think others will back me up on this: I have been very supportive of most every person I have ever posted to. I am always ready to give the benefit of the doubt to people and have gone out of my way to explain things when someone was having a hard time understanding. But if you had read the OP's first post BEFORE she had edited it you would have seen that her concern came across as not so much for her boyfriend, but for herself.

 

You can also see that she seems to have rejected the good advice she was given from other posters about things they could do together. Then she claims that because he works day shift and she usually works nights, there isn't TIME to do these things together.

 

It sounds to me like she is looking for an excuse to break up with him. Blaming it on his celiac disease is one way of not admitting that she just doesn't want to be with him.

 

We celiacs have enough to deal with without someone using OUR disease as a way to weasel out of dealing with hard truths.

0

Share this post


Link to post
Share on other sites




Okay, back to the original topic.

One, I think that it is absolutely fantastic that you are here on the forum asking for tips because you want to do better. Kudos for that.

I'm only nine months in myself so I'm still struggling with a lot of the social aspects. How can I start dating again now that I feel better when restaurants and bars are pretty much off the table?

But here are a couple little things that I think I've got going for me.

• I still have one restaurant that I can go to that doesn't gluten me. Mine is sushi and I'm careful about what I order, but it really does help that the prep area is mainly handling fish, rice, and veggies, and not much else. I'd find that one restaurant that you can still go to and when social activities do arise, know that you have a safe haven if needed.

• I really enjoy cooking and having fewer options out has really upped my game. I have rules for myself when grocery shopping, like try one new thing every time, that help me add new favorite dishes to my repetoire.

 

• I know that if I want to be sociable, I can always invite friends over. Though I can't drink any beer or food that they may bring, I can definitely eat and drink my own ... and not have to carry it with me.

• I know that weeknights are much more difficult to find things to do that don't include bars or restaurants.  There are simply fewer options available. But they do still exist. My neighborhood has art galleries, readings at the bookstore, free outdoor concerts, and they don't require that you eat or drink while you are there, though you can still bring your own. And I personally don't think it is very difficult to sneak food or drinks into a movie theater if you want to avoid the hassle of having to explain that they have to allow you your own food. Would save money too. Or track down an old drive-in theater and make out instead!

• Okay, sporting events are probably always going to suck. No food and limited drink options available and not allowed to bring your own in. Sorry. It may be time to start campaigning to get them to sell at least one gluten-free beer.

• Weekends are easier, events that take place during the day, more outdoor activities where bringing your own picnic is easy. Be a tourist in your own city.

• Exercise doesn't require a gluten-free menu so walking, hiking, biking, kayaking, etc. are all still on your "can do" list. 

 

• Tap into the internet to find people whose lifestyles match with activities that are easier for you. Try Meet Up or just track down activities of interest online. Take a class together. Go to a wine tasting at a winery. Check out the museums.

Basically, add more interesting activities to your life that aren't the same old go-out-to-eat-or-drink routine. It is highly likely that your friends will want to join you! Just ask them. Or share all the pictures of your great adventures on facebook so that they are jealous!!!
 

1

Share this post


Link to post
Share on other sites

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. :wacko:

 

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? :wub:

negative, starfighter.  return to base.  eagle.  over.

 

haha - i was just telling nate about 'jumpy'  :D

 

whoever had the cooking together idea:  how could i forget that one??!!  we do it all the time  :)  it's one of our favorites!   also, we go out if we want to, to bars and such - we have a plan a and a plan b - i am constantly making new friends and getting them to let me (bring my own beer in or sneak food in or a cooler or whatever) do what i want.  we went to bristol motor speedway and the skybox caterers ordered me so much redbridge, i had to sneak the rest OUT - lolz - it''s always an adventure  :P  on that trip, i made friends with one of the track officials, so this year i'm going to call him so i can sneak my own stuff in ;)  and we have people over to the house all the time and they eat gluten free (maybe i let them have bread haha) i usually just keep my stuff separate/take mine out first before dishes get cc'd.  

 

if he is nervous about the bartender's hands, just bring your own straws and proclaim them special.  big wink and a smile to the bartender  ;D  you're hanging out with a bunch of people who are *drinking* - chances are it won't be the wierdest thing they have seen as the night progresses.  good luck :)  and if you want some good pointers, read the newbie 101 thread

1

Share this post


Link to post
Share on other sites

AliveAndWell, I think others will back me up on this: I have been very supportive of most every person I have ever posted to. I am always ready to give the benefit of the doubt to people and have gone out of my way to explain things when someone was having a hard time understanding. But if you had read the OP's first post BEFORE she had edited it you would have seen that her concern came across as not so much for her boyfriend, but for herself.

 

You can also see that she seems to have rejected the good advice she was given from other posters about things they could do together. Then she claims that because he works day shift and she usually works nights, there isn't TIME to do these things together.

 

It sounds to me like she is looking for an excuse to break up with him. Blaming it on his celiac disease is one way of not admitting that she just doesn't want to be with him.

 

We celiacs have enough to deal with without someone using OUR disease as a way to weasel out of dealing with hard truths.

 

Seriously. The OP when it was first written was basically "my relationship is SO BORING because we NEVER do anything EVER..... WAAAAAAAAA" and sounded pretty much like the only concern in the world was about how positively droll her life was.

 

There was plenty of information shared before she came back with the fact that it is difficult to find time to do things together. Maybe he doesn't want to go out because he's worried about all sorts of things he doesn't need to be worried about, in which case he should get valid information. Maybe he's just a homebody in which case they simply aren't suited to each other. Maybe the schedules are a problem. We don't know, but at this point I think we've mostly exhausted all the help we can offer, especially after her changing her entire post from "poor me" to "I'd like to be supportive."

0

Share this post


Link to post
Share on other sites

Hi Tiny!

You mention quite a few episodes of CC during your time together....how long would you say you and your guy tightened down on being careful. He may still be healing if these episodes were very regular for a significant amount of time.

For now you have been given at least twenty activities that do not involve dining/drinking out...but if you really want to do those two things....how about a good cup of coffee with raw sugar or at the bar...gluten free beer or share a nice bottle of wine?

Does your man especially enjoy something you make? If so...throw a serving of that in an insulated bag and head to a nice restaurant....I take enjoyment from my hubs enjoying a nice meal out as long as I bring my food along so I have something safe to eat.

Bottom line...is it doesn't sound like he is feeling great yet...this may not be celiafunk....simply celiac trying to catch up....my guess is he would prefer having fun to feeling like shit.

I'm glad you stopped by...feel free and hang out...always nice to meet another significant other ... we have some pretty great ones around here.

0

Share this post


Link to post
Share on other sites

AliveAndWell, I think others will back me up on this: I have been very supportive of most every person I have ever posted to. I am always ready to give the benefit of the doubt to people and have gone out of my way to explain things when someone was having a hard time understanding. But if you had read the OP's first post BEFORE she had edited it you would have seen that her concern came across as not so much for her boyfriend, but for herself.

 

You can also see that she seems to have rejected the good advice she was given from other posters about things they could do together. Then she claims that because he works day shift and she usually works nights, there isn't TIME to do these things together.

 

It sounds to me like she is looking for an excuse to break up with him. Blaming it on his celiac disease is one way of not admitting that she just doesn't want to be with him.

 

We celiacs have enough to deal with without someone using OUR disease as a way to weasel out of dealing with hard truths.

I think everything you have said is pretty stupid. and everyone else agreeing with you. i am not looking to break up with him did it ever occur to you i just wanted some advice and i got some great tips and advice and i am taking the good advice but i think you have deep abandonment issues and you shouldnt assume everyone is a piece of shit who doesnt have celiac disease. and i know its difficult for me sometimes to deal with this so i can only imagine how difficult it is for someone who actually has the disease. I see the way it affects him when he gets sick, he is very disoriented in his thought processes and he cant eat after he has been sick so he is hungry and his body is exhausted I have seen what it is like and the damage it has done to his body and because i care about him i have changed my habits and diet so he doesnt have to go through that nearly as much as he used to.

 

 

I legitimately never meant to offend anyone or anything of that nature, i am simply a person in love with someone who has celiac disease and i am now seeing the complete lifestyle of a celiac because now we live together.

And now im justifying my relationship and my morals to a complete stranger, kind of a jerk of a stranger so high five. we all got problems.

lets all just stop

stop saying anything further

i got the advice i wanted

so thank you to those with the good positive vibes and good feedback

other than that

stop

0

Share this post


Link to post
Share on other sites

I think everyone has made great suggestions.  He may still be feeling bad due to healing.  My husband eats what I do here at home.  When we go out we go to places that we know, I can have a gluten-free menu, or I can have good seafood/sushi or salad.  Movies, Art shows, just walk and talk and hold hands is fun, boating, wave runners are a blast, there are any number of things you can do that do not include food that will harm you, but a big thing is learning what will harm you, and doing it together is a great thing.  My husband has done his share of reading.  And I was a great cook before, or have been told so, and I just had to learn to cook/bake all over again, my husband helps he is my sampler.  He tells me if its good.  He is willing to have a gluten-free birthday cake this year so I can enjoy cake with him.  He trusts my baking skills again.   :lol: So we have fun, in fact we have even more fun making fun of my body than ever before.  Before he made fun of things I had going on and I would get mad, now I can laugh too, I know what is going on most of the time, understand it, and am trying to heal it.

 

I feel better and more energetic than I have since kids, and I am still healing, who knows how I will feel healed.  

 

One thing no one has mentioned or I did not notice, what about his vitamin levels, could he be deficient and lacking in energy still?  The vitamin supplements, have helped me quite a bit.  I did not know how deficient I was.

 

Hang in there if you really want a future with this man.  It is not that difficult and it does not cause that much trouble.  Its a lot less trouble than eating the bad foods and having a problem with them.....Good Luck.

0

Share this post


Link to post
Share on other sites

I think everything you have said is pretty stupid. and everyone else agreeing with you. i am not looking to break up with him did it ever occur to you i just wanted some advice and i got some great tips and advice and i am taking the good advice but i think you have deep abandonment issues and you shouldnt assume everyone is a piece of shit who doesnt have celiac disease. and i know its difficult for me sometimes to deal with this so i can only imagine how difficult it is for someone who actually has the disease. I see the way it affects him when he gets sick, he is very disoriented in his thought processes and he cant eat after he has been sick so he is hungry and his body is exhausted I have seen what it is like and the damage it has done to his body and because i care about him i have changed my habits and diet so he doesnt have to go through that nearly as much as he used to.

 

 

I legitimately never meant to offend anyone or anything of that nature, i am simply a person in love with someone who has celiac disease and i am now seeing the complete lifestyle of a celiac because now we live together.

And now im justifying my relationship and my morals to a complete stranger, kind of a jerk of a stranger so high five. we all got problems.

lets all just stop

stop saying anything further

i got the advice i wanted

so thank you to those with the good positive vibes and good feedback

other than that

stop

I think it is time you stopped the name calling and grow up.  You are whining and what Bartie said is true and spot on.  This is a great support group for those who are willing to take constructive criticism when needed.  We have a society who refuses to accept responsibility for their behavior and act like adults and you appear to be one of them. 

 

My husband went gluten-free for me and then discovered that he may have a gluten issue himself.  We are both gluten-free and have been doing this for awhile.  Even when I was first diagnosed, I never behaved like you are now.  I was actually overjoyed that I had a diagnosis and never once felt that this lifestyle was too hard to deal with.  Sickness is hard to deal with...not eating and living gluten free.  Ditto for the husband......he doesn't whine that we can't go out to eat a lot and actually took up cooking and we do cook together.  It is a wonderful thing for a truly supportive relationship.  We find plenty to do together that does not involve food.  Maybe someday when you grow up, you'll get there also.  But as for us being stupid......that is downright laughable.

Educating yourself on Celiac is stupid?  Try to re-direct your mindset because I am embarrassed for you when I read this nonsense.

0

Share this post


Link to post
Share on other sites

Okay, back to the original topic.

One, I think that it is absolutely fantastic that you are here on the forum asking for tips because you want to do better. Kudos for that.

I'm only nine months in myself so I'm still struggling with a lot of the social aspects. How can I start dating again now that I feel better when restaurants and bars are pretty much off the table?

But here are a couple little things that I think I've got going for me.

• I still have one restaurant that I can go to that doesn't gluten me. Mine is sushi and I'm careful about what I order, but it really does help that the prep area is mainly handling fish, rice, and veggies, and not much else. I'd find that one restaurant that you can still go to and when social activities do arise, know that you have a safe haven if needed.

• I really enjoy cooking and having fewer options out has really upped my game. I have rules for myself when grocery shopping, like try one new thing every time, that help me add new favorite dishes to my repetoire.

 

• I know that if I want to be sociable, I can always invite friends over. Though I can't drink any beer or food that they may bring, I can definitely eat and drink my own ... and not have to carry it with me.

• I know that weeknights are much more difficult to find things to do that don't include bars or restaurants.  There are simply fewer options available. But they do still exist. My neighborhood has art galleries, readings at the bookstore, free outdoor concerts, and they don't require that you eat or drink while you are there, though you can still bring your own. And I personally don't think it is very difficult to sneak food or drinks into a movie theater if you want to avoid the hassle of having to explain that they have to allow you your own food. Would save money too. Or track down an old drive-in theater and make out instead!

• Okay, sporting events are probably always going to suck. No food and limited drink options available and not allowed to bring your own in. Sorry. It may be time to start campaigning to get them to sell at least one gluten-free beer.

• Weekends are easier, events that take place during the day, more outdoor activities where bringing your own picnic is easy. Be a tourist in your own city.

• Exercise doesn't require a gluten-free menu so walking, hiking, biking, kayaking, etc. are all still on your "can do" list. 

 

• Tap into the internet to find people whose lifestyles match with activities that are easier for you. Try Meet Up or just track down activities of interest online. Take a class together. Go to a wine tasting at a winery. Check out the museums.

Basically, add more interesting activities to your life that aren't the same old go-out-to-eat-or-drink routine. It is highly likely that your friends will want to join you! Just ask them. Or share all the pictures of your great adventures on facebook so that they are jealous!!!

 

 

So many excellent tips! I have to +1 exercise. Especially canoeing (I'm being biased...). It releases endorphins (so makes you happy) so theres that too! 

0

Share this post


Link to post
Share on other sites

"I think everything you have said is pretty stupid. and everyone else agreeing with you. i am not looking to break up with him did it ever occur to you i just wanted some advice and i got some great tips and advice and i am taking the good advice but i think you have deep abandonment issues and you shouldnt assume everyone is a piece of shit who doesnt have celiac disease. and i know its difficult for me sometimes to deal with this so i can only imagine how difficult it is for someone who actually has the disease. I see the way it affects him when he gets sick, he is very disoriented in his thought processes and he cant eat after he has been sick so he is hungry and his body is exhausted I have seen what it is like and the damage it has done to his body and because i care about him i have changed my habits and diet so he doesnt have to go through that nearly as much as he used to.

I legitimately never meant to offend anyone or anything of that nature, i am simply a person in love with someone who has celiac disease and i am now seeing the complete lifestyle of a celiac because now we live together.

And now im justifying my relationship and my morals to a complete stranger, kind of a jerk of a stranger so high five. we all got problems.

lets all just stop

stop saying anything further

i got the advice i wanted

so thank you to those with the good positive vibes and good feedback

other than that

stop"

Nope. No abandonment issues here, but I have read so many posts about others whose spouses, parents, children or friends don't take celiac seriosly. And from what you said about asthma and celiac not being equal in seriousness, it's obvious you don't take it seriously either. Asthma can kill. I know, I lost my father to asthma. Celiac can kill. I lost my mother to celiac. Asthma kills quickly. Celiac kills slowly and torturously. Ask some of the other posters here who nearly died from the complications.

Also, you say he has had celiac for four years and you have been in a relationship with him for a year and 1/2. Are you saying he went two and 1/2 to three years NOT sticking to the diet, even though it gives him the terrible symptoms you describe? I think it's more likely that he was taking care of his health but when he started dating you he wanted to please you by going out to restaurants and bars, then found out it was making him sick so he put a stop to it. I think it's very possible that your constant CC'ing until recently (that's what you said) has made him afraid of YOU.

It's obvious from your language that you are very young. The newness has worn off of this relationship and now you're bored with him. This post I quoted is the first time you have mentioned the words love or caring rather than boring and "I can't take it". You come across as LOVING good times and CARING about yourself.

YOU stop. Stop the foul language. Stop the selfeshness. IF you care about him, let him take care of his health, implement the suggestions you have been given (unless of course your ONLY idea of fun is bars and restaurants rather than museums, zoos, outdoor activities, etc.), and stop making excuses.

0

Share this post


Link to post
Share on other sites

barty, everybody has to begin somewhere.   i don't know if i would be able to stick to this lifestyle if i was young and dating!   remember, this disease, left untreated, gets progressively worse.  maybe 4-5 years ago, not so much damage, you can still ignore it.  fast fwd a few years, (more damage) it's a huge issue.  huger than your young self thought and it scares you into staying home.  it is then it affects your relationship, who met you while you when you were still in denial.........  (cheap reference to my s/n:  who has celiac???  notme!!!! lolz)  

0

Share this post


Link to post
Share on other sites

I have trouble getting my husband to go anywhere, and he's not the one with celiac disease!

 

Is there a support group where you guys live that you could go to together? A physical one, where you meet people in person rather than just online. (Although online support is great - it's why I'm here!) Other couples might be going through the same thing and you could connect with them and see how they handle this. Sometimes it's nice to know that you're not all alone. It still would not be entirely "normal", as it would be celiac focused, but it might show your significant other that going out for a drink or coffee can work out. And you might find an activity to enjoy together that you haven't thought of yet. 

 

Just a thought - good luck to you. 

0

Share this post


Link to post
Share on other sites

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.

oh my god that is so terrible.  I just had to reply to this to say I'm sorry to hear that :(  I know my ex boyfriend's family didn't understand it at ALL and would call me anorexic because of it! How heartless.  Makes me sad people can be so cold.

0

Share this post


Link to post
Share on other sites

oh my god that is so terrible.  I just had to reply to this to say I'm sorry to hear that :(  I know my ex boyfriend's family didn't understand it at ALL and would call me anorexic because of it! How heartless.  Makes me sad people can be so cold.

I've learned to cope with the attitude.

It's one of the reasons I'm not married anymore and

for some people it's just to much to sacrifice.

Which was my original point to my post. You either love the person enough to make the

Sacrifices to keep them healthy or you don't. Be it spouse, friend, sibling,

Or offspring. I can count on one hand the number of friends I have left. But what's

The alternative? Being horribly sick all the time?

No thanks. I have enough health problems without adding to it

2

Share this post


Link to post
Share on other sites

Hi Tinydani,

 

My first post here (regular reader though) and I feel compelled to respond as I was once in that terrible place where your boyfriend is right now. I’m of a similar age to you (25), male so feel I can relate to your story.

 

You’ve had a lot of stick so far so I come here hoping to reassure and help - based on my story and what I have understood of yours. I am almost 5 months gluten free, not long in terms of this Disease and recovery, but I have already been through what your boyfriend seems going through now – or at least I had a similar mindset at one point in my recovery.

 

I was in a rut, still am to an extent, where Coeliac’s physical and mental symptoms consumed my life. The mental symptoms had the most devastating impact on my life.

 

I will explain, bear with me.

 

My brain compartmentalised the day into 4 basic tasks – eat, work, rest, sleep. My mind did its best to avoid anything that deviated from these tasks. So for instance, when I had returned home from work I would eat my food; thereafter I concentrated on rest and then sleep. If my fiancé wanted to go out, have fun - do anything – I would oblige but would be stubborn and moody whilst doing whatever it was she wanted to put me through J . I wanted to rest and rest only. I would not socialise or even wish to pick up the phone to call friends/relatives because this would interrupt my rest time – so that took spontaneity out of our lifestyle.

 

Making plans was also a problem because firstly, it takes energy to think and plan tasks and secondly, the plan will end up deviating me from eat, rest, work or sleep. So planning day-outs was a problem too!! Does this sound familiar to you?

 

The disease consumed me – I would track my weight, my symptoms, everything I ate. I would have graphs, charts and stats and take weight readings every day. This is all part of the depression and anxiety that Coeliac disease gave me. I would distrust any “gluten-free” restaurant and I was terrified about cross contamination in a similar way to your boyfriend – although not as far as believing gluten is on all packaging!

 

Check out the ‘behaviour’ room on this website. There are lots of people who express what they feel better than I have. Their accounts are also similar to your BF’s.

 

It will be hard for you to see the invisible symptoms your boyfriend is suffering – the depression, anxiety, brain fog, fear. But he needs your loving support for his head won’t be in the right place. For me, a hard talking to by my fiancé snapped me out of it – she told me I was becoming consumed and it was making her sad. I didn’t want to make her sad so I concentrated all my energy into finding a way out. She told me because she loved me and knew I needed a good talking to! She was harsh, but I knew from all her support that she had been giving me that I needed to do something too.

 

It will get easier the longer he goes without a glutening. . The depression lifts the longer you are without gluten. For me its about 3 weeks. It didn’t come easy. At first I was still tired though, and my head was full of dark thoughts and I was a recluse. I looked into it and found that I was B12 deficient – I took some B12 mouth spray and drank Lacto-free full fat milk (full of B12). I had instant energy. With energy, I wanted to use it and do stuff. So I slowly started turning my life around and became a happier person. My fiancée and I eat out at least once a week, we do things. I see friends and don’t mind phoning people now. My eat, work, rest and sleep compartmental-isms are still there but mixed in is socialise, exercise and all sorts.

 

Is your boyfriend still getting ‘glutened’ do you know? If not he should be improving after 4 years so get his nutrient levels checked. Anemia or B12, folate, Vitamin D deficiencies can cause the behaviour you are describing as can adrenal gland and thyroid problems. If he is still having accidents then you can expect him to be a recluse and have ‘head’ problems – you need to understand that he has to recharge and gain positive energy before embarking on ‘normal’ things. You will know whether or not you are willing to afford him your energy to help him through.

 

Not to mention, you may be suffering deficiencies on your new gluten free diet which may be making you a bit blue?

2

Share this post


Link to post
Share on other sites

thank you so much for posting this, chrisz - it sure helps to see the other side of the picture :)  and some great advice that is unique to the situation - you have the perspective that we do not, awesomely helpful -  glad you are feeling better!   

1

Share this post


Link to post
Share on other sites

thank you so much for posting this, chrisz - it sure helps to see the other side of the picture :)  and some great advice that is unique to the situation - you have the perspective that we do not, awesomely helpful -  glad you are feeling better!   

 

No problems whatsoever notme! I am actually indebted to this forum and incredibly grateful for all the advice that is posted on a daily basis. There are so many sides to this disease. I'm just getting to a stage where things are a bit clearer after the first few hellish months - were it not for the great advice on here those hellish months may have been extended much further into the future. So many great tips on here have aided my recovery. So thanks y'all!

2

Share this post


Link to post
Share on other sites

i know what you mean about things being clearer!   i have no idea how i got my kids through to adulthood and worked full time as well - i was sick for a very long time until they finally figured it out.  i am assuming you are on the younger side of the spectrum, so you are ahead of the game.  it doesn't go away so you have to learn to manage it - after years of giving this speech to my type 1 diabetic son, i had to take my own advice when i got diagnosed.  certainly not the same as taking a pill and you can't 'adjust' it with an injection if you mess up.  but it can be done :)  it can be discouraging to look at the 'big picture' because it's going to overwhelm you.  take it day by day and soon it will be second nature.  oh, and welcome to the best club you never wanted to join  ^_^

0

Share this post


Link to post
Share on other sites

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?

Uh? Celiac is only about food, you can do anything else that isn't food related and have fun again, movies, attraction park, oh yes you can even get wasted just make sure it's gluten free alcohol.

 

There is a ton of gluten free alternatives to eating too as long as he doesn't have  a list of a thousand allergic reaction though.

 

Maybe try to get him to stop being so scared while also not neglecting the possible dangers of him getting sick, it might not be all you, maybe he is very that scared, so help him out on that.

0

Share this post


Link to post
Share on other sites

I'm just reading this thread now, and wanted to add my 2 cents worth.

 

It seems to me like your boyfriend might be having some issues other than just wanting to avoid getting glutened, and that you should sit down together and talk about it openly. Is he really just afraid of getting sick, or is he avoiding going out for other reasons? I know I'm definitely guilty of using "I can't eat anything" as an excuse to just stay home and be anti-social.

Also, is he feeling ok otherwise? If he's still not doing well it could be that he has another intolerance (dairy, soy, etc) that should be dealt with. Maybe he is still recovering from gluten damage (which can take many months), maybe a vitamin deficiency. But you know, it's on HIM to take care of his own health. You can be there for him and be supportive and eat gluten free and make sure the house is safe, but he has to take responsibility for his own health (physical and mental) and you should not feel like you are contributing to his condition, or making things worse. (someone mentioned that he might have slacked off when you stared going out, but that would have been HIS decision, not yours).

Being Celiac is tough. Eating out is tough. Accommodating other people can be tough, but we educate ourselves and do whatever we can. I will not let fear or getting sick stop me from doing what I want, even if it means bringing my own food.

 

What I really wanted to tell you, though, that even though he might be afraid to do things, you don't have to restrict yourself because of it. If you want to go do something, do it. If he really doesn't want to, do it on your own. Go out with your friends, go eat foods you like (as long as you brush your teeth before any kisses all should be fine), go do the things you want to do. Try your best to spend time together, and go out and do things when you can. (Go for a walk, take a picnic, etc etc). Just don't feel like his restrictions should restrict what you want to do.
 

The fact that you want to help him stay healthy is great, and its obvious you really want to make this relationship work, but you can't make someone else do what they aren't willing to. So, yeah, its difficult, and frustrating, but don't let it restrict you. Encourage him to educate himself more, look into any other problems, and to honest with himself and with you.
 

I wish you much luck.

Cheers

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0