In honor of today being Mrs. Gluten Dude’s birthday, I thought I’d write about the importance of spousal support for those with celiac disease.
I belong to several celiac forums and help people out where I can. I cannot tell you the number of people who do not get support from their spouses when they get diagnosed with celiac disease. It is so sad. Here are some of the complaints I hear:
“My husband says I can have a little gluten…it’s no big deal.”
“My husband constantly contaminates my gluten-free butter.”
“My husband says celiac is a media created disease.”
So two questions:
1) Why does it always seem to be the husband who lacks the compassion? Actually, don’t answer that…or if you do, be gentle.
2) What the #$%$%# are these people thinking??
Do the words “in sickness and in health” ring a bell??
When you first get the dreaded celiac diagnosis, it is absolutely overwhelming. You feel like your entire life has been overturned. And in a way, it has. Nothing will be like it once was. I still remember going grocery shopping the day after my diagnosis and all I kept thinking as I was going up and down the aisles was “I can’t have that. I can’t have that. I can’t have that. I can’t have that.” It really sux.
But if I had to do it without Mrs. Dude’s support? I cannot even imagine. Immediately, she immersed herself in education about the disease. She went out and bought separate utensils and pots and pans. She made part of the kitchen off limits to everyone but me. She labeled all of the drawers, counters, etc. “gluten free” to remind the kids and our guests. But more than anything else, she just made me feel like I was not in this alone. And because of this, it’s five years later, I’m (somewhat) healthy, I’ve never cheated and living gluten free just feels “normal” now.
But this post is not about me. It’s about YOU.
You need this type of support. If your spouse is not behind you 100%, dig deep and figure out why. It is a tough journey having celiac disease and it’s one nobody should go through alone. But to go through it while somebody in your own home is fighting it? Total BS. No, I’m not really advocating leaving your spouse. Suggesting? Maybe. But advocating…no.
But if your spouse is indeed in denial, you need to find another support system. The celiac community is indeed a wonderful group of people. Immerse yourself with them and all of the sudden, you won’t feel so alone.
Join Twitter and hashtag gluten and celiac.
Register with celiac.com and engage yourself in their forums.
Find a celiac support group in your area.
And by all means, feel free to ping me whenever you want.
I may not be your spouse, but I’m not half bad.
I may not have Celiac but you are not alone! I support and love you 110%! You make me proud everyday….well not the “cranky, foggy, in the bathroom 1/2 the day and the other 1/2 in bed” days.
XOXO Mrs. Dude
Awesome post! I find this subject – spousal support for celiacs – very under-reported and covered. Thank you very much for putting a spotlight on this issue I’m sure many face.
Keep up the great work and I hope you’re able to limit the “cranky, foggy, in the bathroom 1/2 the day and the other 1/2 in bed” days Mrs. Gluten Dude references above!
Watch for cross-contamination & keep current on labelling. 🙂
“Happy Birthday!” Mrs. Gluten Dude! 🙂
Yours,
GFDougie
Great post!
My husband is 100% supportive and we have no gluten in our household at all. He wants me to feel safe and secure at home and not have to worry constantly about cross contamination. I wish for all celiacs to have this kind of support. Being dx with a life changing autoimmune disorder is difficult enough, never mind having to do it alone. 🙂
We are indeed blessed…
Touchy subject with me. My husband thinks I’m overreacting when he leaves the counter covered with toast crumbs. He thinks I’m being difficult when I move my salad away from where he is eating pizza with the crust crumbling near my food. He DOES try to be supportive at restaurants, chiming in when servers question me, or they make a mistake. But at home – not so much. I have to cook TWO meals: he won’t eat my GF food (unless it is something naturally GF, like tenderloin tips with Baby Bellas and Vidalia onions over Basmati rice) Oh, but he DOES eat my gourmet cupcakes that come from Sugarbird Bakery…go figure.
Hmmmm…how do I respond to this one??
I hate hearing this stuff Karen. All I can say is I’m sorry. I think it sucks the way he acts.
Karen, this is what I experience. I’m newly diagnosed (just over a month). Hubs sorta thinks “no big deal” and while he has been helpful trying new things (but generally if I say “gluten free” he makes a face), he thinks cross contamination is “taking it too far.” I mentioned trying gluten free lotions/shampoos/cosmetics, he said “that’s crazy.” I just want to throttle him!
Danica:
My husband says GF food “smells funny.” I insisted on separate toasters, and he thought I was overreacting. I tried to explain the 20ppm rule to him, visual cue you know, but…meh. Walk a mile in my (our) shoes before you judge what’s “taking it too far.” You may find that the caution is also the cure.
And let me guess, he pays for none of that expensive gf/df/soy free food that starts at 5 to 7 dollars for one little item, and he will eat it ALL!!!
Wow. This brought me to tears. I was diagnosed 10 years ago. Everything quoted above could’ve been from my husband, who has declared my fears of cross-contamination “fanaticism.” Even back then, he thought it was just some fashionable diagnosis dreamed up by a gullible doctor.
He swears now that he’s careful with the jam jar, etc. Then the other day I walked into the room just in time to see the knife going from bread loaf to jam jar. I get the impression that he thinks if he does it when I won’t see, I’d never know the difference.
The really depressing thing is knowing I’m not alone. I don’t understand why so many men are like this. Thank you for bringing this up. Indeed, it’s a very important, but neglected, subject.
Gosh…I just hearing this stuff E.J. Tell him to get is act together…now!
Men are idiots (well not ALL men).
I think they think it’s not true. My just bad says, “I feed you that before and you had no problems! I said could it be I spare you’re the gorrey details of my bathroom trials and tribulations. What an idiot to gluten, dairy, or soy me trying to prove I do t have it year I’m sick fool! Should I check for the insurance policy with a double pay out on cancer???
I also have a very supportive spouse and today is our one year anniversary. Yay us! I hate hearing about spouses who are not supportive! All of my girls (bio & step) are also supportive. So far I have not had to separate parts of the kitchen, use separate butter, etc. I’m just careful not to get bread crumbs on “my” bread. 99% of our meals our completely GF because one day I just got fed up and told everyone I refused to make 2 separate meals every night! They would just have to suck it up and deal with it. They did. Life got so much easier!
Happy belated mother’s day Mrs. GF Dude!
Thanks Dana. I’ll pass along your good wishes.
I have had a housemate for the past 6 months. He’s been very supportive. Changed his routines, has learned how to cook GF, and is very solicitious when I’m not feeling well. The unsupportive husbands above sound more like my adolescent children than real men – although my kids never would have done anything to contaminate my food. They just wanted Mom to continue to provide the same kinds of food that they had always had. We did end up doing separate meals, and they learned how to cook for themselves. Some of those unsupportive husbands sound like they need to grow up and quit being so passive aggressive about an issue their mates cannot change..
No arguments here Danette.
Gluten Dude,
I just found your blog and I really wish it was around when I was first diagnosed 10 years ago. I have one friend who was just recently diagnosed and a cousin who is going in for an endoscopy in a few weeks. I will be sure to point them both to your blog immediately! 🙂
What I really appreciate (seconded by the newly diagnosed friend) is your decision to describe the reality of Celiac Disease and what it is like living gluten-free – IT SUCKS!! Many blogs or article always say how it’s manageable and it’s “not that bad”. True, there are many things that could be worse – but, especially when you are newly diagnosed you want someone out there who can empathize with you and what you are going through emotionally and physically. I highly commend you for what you are doing for the Celiac community.
That being said, I also had to comment regarding the benefit of a supportive spouse. I was in a previous marriage when I was first diagnosed and my ex-husband was very passive aggressive about it. He would say he was supportive….but, in reality – he wouldn’t assist me in any of it and thought I was trivializing every worry about contamination, etc. I went through a depression when I first realized how social food is and how left out I felt, but he couldn’t care less and basically thought I was just being a big baby about it. He would even send me out to buy him fast food (that I obviously couldn’t eat). He would consciously eat foods I couldn’t have (and craved) right in front of me. I have to say it is hard enough dealing with a society that doesn’t understand – but having it in your own home is 10 times worse. This was not our only issue, but one of many factors of why I did choose to leave him and end our marriage.
Happily, I have found a new husband who is 100% supportive and understanding. He has even taught me to enjoy food again. He eats gluten-free probably 90% of the time with me – we keep very few things in the house that are not gluten-free. It is absolutely amazing to feel the difference between someone who is supporting you through this disease and someone who obviously didn’t care enough to.
Anyway, again – thanks for your contribution to the Celiac community….please keep the blogs coming – AND please say a special thank you to Mrs. Gluten Dude and your children for being so supportive of you.
Thanks Kristin…you just made my morning.
So happy you found someone that “gets it”. It makes all the difference.
You’re welcome, Gluten Dude…I truly appreciate what you’re doing with your blog. Not only is it helpful for me (10 years in)…but I see the incredible benefit for my newly diagnosed friend and my cousin – who is honestly freaking out right now with the idea of potentially being diagnosed with Celiac. She is already grieving the loss of food and she hasn’t even had her biopsy yet. If she does have Celiac….1) I won’t be the only one in my family anymore….but, more importantly 2) I would like to say I have paved the way for our family to understand Celiac which will be so much more helpful for her just starting out with this diet. Not only do you need the support of your spouse, but also the support of your close family members. It took my family a LONG time to come to terms with it. Not that they said anything to belittle the disease – but, they just didn’t want to learn. For years, my mom would always make me bring me own separate food for family events. Slowly, but surely – they are starting to come around.
However, regarding family – I do have another question for you …have you had your children tested for Celiac? I do not have children – so I don’t have any direct experience, but my newly diagnosed friend and my cousin each have 2 children and they are wondering what to do about testing for them? They both understand they should have them tested, but they are not sure (and are very worried about) what to do if either has “latent Celiac disease” (i.e., positive blood test, but negative biopsy). I would appreciate any info you may have. Thanks!
We got our younger one tested a few years back because she had some stomach issues, but she came back negative (yay!!)
I’m pretty sure that I would be curled up in a ball in a rubber room somewhere if I didn’t have my husband, Pete. Within 30 days our two daughters and I were all diagnosed. We referred to it as the Celiac Tsunami. He never waivered. He understood the guilt I felt knowing that I passed this disease to our girls. He read and researched and went to every doctors appointment with us. He whipped up incredible dishes. He is on a first name basis with the employees at our local Five Guys and taught them exactly what to do to make me a safe meal. When I’m scared and sad and overwhelmed, Pete makes sure that we pick ourselves up and keep on going. Equally as awesome, he is such an incredible role model for our son who tested positive for the gene but does not have active Celiac disease. They are my gluten dudes and Gus, just 9 years old, protests his sisters and is overly cautious in the kitchen to prevent cross contamination. I literally don’t know what I would do without Pete and it makes reading this story so painful. Everyone should have a Pete!
My husband is supportive in waves. There are times he will call ahead to restauants to check if I can eat safely and will go out of his way to get me a cupcake at a gluten free bakery and there are times were he whips out a bag of gluten filled pretzels and shares them with the kids (i.e. crumbs everywhere). Sometimes he fine with it sometimes he begs me to eat “normal” again and tells me how much stress I’ve put on our family with my worries of cross contamination. I’ve taking him to support group meeting, read him countless statistics of cancer rates and higher morbidity rates. He thinks I’m over reacting. He says we’re all gonna die someday may as well eat and enjoy and deal with the consequences down the road. He used to love taking me out to dinner and still tries to often but gets very mad at me when I worry about cc at restaurants with gf menus. Tells me I’m overreacting. Being ridiculous. Hes been to the doctors with me and heard him say how important a strict gluten free diet is. I think part of the problem is that I’m asymptomatic so I was never really sick (at least on the outside)to begin with and there’s been no change in any of my issues (heartburn mostly) over the past 3 years. Also the fact the the first *two* GI doctors I saw both told us that i could eat small amounts of gluten on occasion amd it would be fine since im assymptomatic and that no I didnt have to worry about crumbs. Not very helpful for my cause. I think if I was sick and showed improvement on a gf diet he would be more supportive. Maybe not. But yes he has made this journey 1000x more difficult for me then it would have been if he was supportive. I read so many blogs where people talk about how amazing there spouses are and it turns my stomach with jealousy and I start asking “why me?”. I try to tell myself everytime we fight over this it’s making me a stronger person. It’s the only positive I can pull from it. He is just the type of person who is very threatened by change and feels “why can’t I eat a bagel at my own kitchen table and leave crumbs..it’s my house”. I don’t blame him and agree that it sucks. If it was one of our children he would take it much more seriously I think. All I can do is keep trucking along and hope he comes around.
Sharon…he does not seem to get it AT ALL. Your health and your life lie in the balance. Yes…it’s a pain in the ass for everybody. I think we all agree with that. But there are no alternatives. He needs to get on board 100% or you are in for a long, tiresome journey. Sorry to be so blunt, but this kind of stuff drives me nuts.
As for those two doctors who said you can have a little gluten….&^$^**^%&^&%&%
What a baby. He does realize that you can’t eat a bagel, a real bagel, at all, like…ever. And he’s complaining about not being able to leave a few crumbs? Celiac or not, no one should be leaving their messes behind for others to clean up.
Wow. I can not imagine how hideous it would be to have an unsupportive spouse. If my hub did any of those rude things, first I would punch him in the throat (& he KNOWS I would too despite being 5’6″ to his 6’4″). So sorry for all of you that are dealing with this issue. Also, celiac or not, do you know who leaves crumbs everywhere? PIGS. Just sayin’.
All these comments here make me realize the real reason I’ve become so deeply depressed, even though I deny to everyone that I am depressed because I can’t change the cause. I’m not talking about the cause being that I can’t eat gluten, that is not the cause of my depression. I like eating gluten-free, I know how to do it, but it’s just really hard to avoid the cross contamination. I am so worn out with the struggle. If I tell everyone I’m not depressed maybe I won’t be, so that’s what I say, to everyone, even myself. I try to will myself not to be depressed and then maybe it all will get better. I keep thinking I can do things better, that it’s me who has to do better, to fix things somehow, in some way I haven’t thought of yet, so I won’t keep getting sick. Maybe if I’m nicer, or in a better mood he’ll be more motivated to keep me from getting sick from the stuff he eats, and most all he eats has wheat gluten or hidden gluten. I’ve been blaming my depression on so many other things, including that I keep getting sick from what I know is cross contamination, and getting sick is depressing, but after reading all this here I realize how different things could be for me in my own home. Instead I dread just going into my kitchen every day. A kitchen is supposed to be a happy nurturing place. But in my home it’s a dangerous place, a place I have to be careful what I touch in the refrigerator, or watch out for the dirty counter. It’s a place where arguments and fighting happen every day. It’s not safe, it feels bad in the kitchen and now it’s just a battleground where I feel guilty for complaining or nagging or bitching because I feel so helpless and angry. I’m constantly looking for crumbs or a dirty counter top, or kicking myself for forgetting to wipe things down before I set my food or utensils on the counter. I feel so alone and confused because my spouse is basically a very good man. But I do not feel like he is a partner in my health, not really. He seems to try, he shops and tries to find new things for me to eat that are gluten-free. But at home he seems reluctant most of the time, and our kitchen is almost the same as it was before I found out I can’t eat gluten. I try to keep my food separate, I try to guard a little spot just for me. I wait my turn so I can wipe down and use the common counter space. He seems irritated by me every time I start wiping things down, as if I’m intentionally trying to make him feel bad when all I’m doing is trying to be safe and not get sick. My kitchen is full of dangerous food substances that I don’t dare try to isolate or get rid of because he will just get angry and tell me I’m over reacting. He gets annoyed and angry when I remind him over and over about cross contamination. The crumbs I can see and I clean them up myself, if he doesn’t, but the sauces with the hidden gluten that get on the refrigerator door handle or wherever, I can’t see that. It never fails that when I relax and don’t worry about the stuff I can’t see, when I know for a fact that he’s had a dinner with sauces that have hidden gluten, so many times I have relaxed and told myself not to “over-react” and then the next day I’m sick, and it takes me days to get better. I feel so angry, but anger does no good, so most of the time I just go inside myself, and then he thinks it’s something else, and then I start to think it must be something else too. In a relationship, there are so many “something elses” it can be, so then it becomes the something elses, and we both get depressed about what we imagine is wrong, when really, I am just all alone with this, more alone than if I really were, alone, in my own kitchen, a kitchen I could make safe for myself. I read about those who have amazing supportive spouses who go gluten free even though they don’t have to, and I just cry.
Dear Sad Lady,
My heart is just breaking reading your comment above. I am the same Kristin that posted earlier in this section …. I have been there and I understand what you are going through. It literally made my gut tense up while reading your comment because it brought me right back to that time when I was dealing with the exact same issues. I am so very sorry that is happening to you.
You said yourself your husband is basically a good man – so try to reason with that side of him. My best advice is to talk to him. But, pick the time and place. Make sure it is not at a time when you’ve already had a fight because you wiped down the counter – or he’s already irritated at you for double checking that there is no cross contamination. But, some other time – away from the bad mojo of the kitchen…. talk to him. Explain to him how you are feeling – so you both don’t continue to think that “something else is wrong” and then the whole spiral of emotions starts happening again. I’ve been in that deep depression and I don’t want to ever go back…. and I want to help you out of it as well!!
I don’t want to see you being stuck in this same situation – you need to change it…otherwise, it will continue to get worse as time goes on. Your Celiac is not going away – so he needs to adapt now. I’m guessing if you can talk to him and come up with a compromise – it will be better for both of you in the long run. Decide on a common “gluten-free only” area in your kitchen… including some counter space – that way he won’t have to be irritated by you wiping down the counter, because it will already be free of gluten. Same with utensils,etc. When I was with my ex – we had separate toasters, separate utensils, and separate peanut butter and mayo jars, etc.
I do hope this helps a little. You deserve to have support while dealing with the gluten-free diet …and if he is the good man you say he is – he needs to step up and be there for you…. not work against you.
Sending prayers that you have the strength to discuss this with him and that he will be open to some compromise.
Sad Lady, I could’ve written your comment myself. My husband’s obsession with pastries, pies, breads, etc. and his dismissive attitude toward my cross-contamination fears are adding greatly to my current state of despair and depression. Last night, I stood at the kitchen sink and stared at a cup sitting in the drying rack. It took me a moment to realize that the substance stuck to the rim of the cup he’d “washed” was some of the pie he’d been eating that night. I don’t feel safe eating off of anything in my house. I keep having stomach issues and suspect it largely has to do with my cross contaminated kitchen. I don’t even eat at the dining room table anymore. It’s just too full of crumbs. I also have other serious illnesses, and they get worse when I get glutened. I never know when I’m getting sicker if it’s from being glutened or not. It’s enough to make me crazy.
He has his own “gluten counter top area,” and I have my own toaster. But I don’t entirely trust him not to use it when I’m not around, even though he says he doesn’t. He isn’t careful about keeping the gluten to his side of the counter. He leaves crumbs in the microwave. He just doesn’t understand how serious it is. He still thinks that “a few crumbs” couldn’t possibly make a difference.
I received my celiac diagnosis roughly 12 years ago. I have calmly explained the issues to him, over and over again. He says he gets it. But he obviously doesn’t get it. Celiac is miserable enough, but when your own home isn’t a safe place… It’s very difficult, lonely, infuriating, depressing….
This is all very illuminating.
Actions speak louder than words. There’s a reason people say that. It’s a kind of abuse really. In physical abuse, the abuser says, “I love you”, after he beats the crap out of the victim. Saying you understand gluten-free, but then clearly demonstrating by your actions that you do NOT, and continue acting in such a way that it HARMS another person is abusive. It is more “subtle” than physical abuse, much in the way that verbal abuse and belittling a person is emotional abuse. Making someone sick through your actions is like a new category. To be fair, some people may have food addictions that make it impossible for them to give up their breads b/c it is not making THEM physically ill. But still, any grown up should be able to comprehend the principles of cross-contamination and adhere to the rules that need to be followed.
Sad Lady, I could have written your story myself. My husband even would open a bag of wheat flour and poof it through the house because he was sure (no matter what the doctors said) that all I had wrong with me was a calcium deficiency. Now he was recently diagnosed himself with celiac. So finally for me it is getting better. My whole house is gluten free. I still have to worry about cross contamination but not from my husband. I did talk to my husband in every way I could think of to try to get him to understand how serious it is. He just wouldn’t listen. I hope your husband will listen. If he doesn’t maybe it would be better for you to rethink your situation. I was getting ready to file for a divorce when my husband got his diagnosis. (Celiac’s wasn’t the whole reason,(or maybe it was.. He is an a** all the time now… probably due to him being celiac)) I just finally placed my health above my marriage vows. I figured what good were my vows if I was dead? Because of his diagnosis I am willing to give it another bit of a try. I hope your road becomes easier.
I am glad in a way I am not alone that my husband doesn’t get the whole Celiac thing. I was diagnosed last summer after months of feeling like pure death, I knew I had of chance of having celiac because my great aunts, my grandma and my mom all have celiac disease. My husband though just doesn’t understand the whole cross contamination thing, he will put a flour tortilla on the cutting board he knows I use and wont wash it or put it in the sink. I caught him doing that last night and as soon as I said please put that in the sink to be washed it started a fight. I have been “celiac sick” for the last month and I couldn’t figure out why, I will tell him ive been really sick and his response is “well your colon is really clean that’s good” I guess its good that I am not getting nutrition and I feel like crap all the time. Then when he makes home aid flour tortillas, he will just leave the flour mess in the sink for me to clean up. If I say anything about it he says I am over exaggerating and I don’t have it as bad as my mom and just to suck it up. I am just so frustrated and tired of being sick. I had to vent.
I simply don’t understand people…sorry you have to deal with this.
I wish I could say it gets better…I’ve been diagnosed for just over two years and my husband is no more supportive now then he was when I was diagnosed. He still thinks I’m exaggerating about cross contamination. I basically cook everything myself so I know we are eating gluten free, but he’ll make a sandwich and leave crumbs everywhere. Or stir his spaghetti noodles then put the same utensil right in the sauce to “test” it (that one caused a huge fight. I said “I’m not eating that” and he got angry and said “I’m so sick of dealing with this”). When he wants to eat out, or when we are on vacation, I’m in a panic, but afraid to really say anything. I use my “find me gluten free” app and just hope the restaurant reviewers know what they are talking about (I did get a chance to eat in a fully gluten-free Italian restaurant in Scottsdale this past week. I “forgot” to mention that to the hubs, who was NOT happy it was all gluten free. But, it was one of the best meals I’ve had out in 2 years!). My best friend is more supportive than my husband, which is sad to me. I just hope with time he comes to understand. I hope the same for you Rochelle!
It’s so depressing. I could absolutely imagine my husband doing the same thing with the spaghetti spoon, etc. The mere mention of cross-contamination sends him into a rage. I don’t understand why it causes *them* to be angry when we simply ask… well, to be considered and treated as if we matter. Danica, your story about hubs being miffed because, God forbid, you actually got to eat somewhere safely and enjoy your meal just about made me cry. I don’t get it why so many men are such sadistic self-centered **holes. I’ve known women whose partners have simply abandoned them after they developed a serious (non-celiac) chronic disease. So much for “in sickness and in health.” I guess that part of the vow is only for the wife! (Alas, more often than not it is the men who are like this.)
No argument here…men can be total dolts.
I am completely at the opposite end of the spectrum here. I was diagnosed a year ago after having lost 30 lbs in two months along with other issues. I have always been the cook and shopper in the family…and I’m the guy in this pickle .
My wife whom I love dearly has really made no effort to educate herself in Celiac’s other than what I force into her ear. Shenis supportive in social situations but privately, not so much.
She runs a child daycare in the home and has to make a lot if meals for the kids and they nowhere near gf. There is no spot in the kitchen that is off limits and I have given up on trying to keep gf apart from gluten.
I not my own utensils and pans and toaster to no avail. The utensils got used then the pans. My toaster has not been used but I keep it hidden.
We have had discussions about thus and it really doesn’t stick. The response is I’m too busy, I’ll get it later. I cook as much as I can but a lot of nights its turkey sandwiches on gf bread using mayo in a squirt bottle
I understand the depression. Its real. Its not gender specific.
Thanks for listening.
Wow, Ken, sorry to hear your story. Indeed, alas, cruelty and insensitivity is not a gender-specific issue. The depression is very real, and very painful. When you can’t feel safe and relaxed in your own home, and when the person causing you the most anguish is the person who should be most supporting you… It’s very, very painful. I really feel bad for you that you are on the receiving end of such cruelty and insensitivity.
I was diagnosed with Celiac 11 years ago and I have to say my hubby was my anchor through the entire transition. I kept thinking it was like an allergy where a little was a little bad and a lot was worse. It took awhile for me to catch on that even a little could make me sick. Hubby didn’t tell me what he was doing and secretly charted what he had for breakfast before he kissed me goodbye in the morning to provide to me that his raisin bran was making me sick (and I’m not talking about deep kissing). After that, he insisted on a gluten free home so he wouldn’t have to worry about slipping and making me sick. When I started going to the local Celiac support group, he goes with me.
I don’t know how people make it with an unsupportive spouse but I feel very lucky.
This post is beautiful! I would love if more celiac people got this kind of support! I would do just about anything for a woman to do this for me.
All of these posts are deeply disturbing to a Celiac person and are very sad. I have been celiac nearly my whole life and God’s honest when I had been going to the gastroenterologist I was sitting on the exam table after three biopsies and as the doctor was entering the room I was chanting, “please be cancer, please be cancer, please be cancer!”. My doctor asked what I was chanting and i informed him and why. (Which is, I read ahead of time before I was diagnosed about celiac and I would rather have the ability to eat what I want, maybe that is stupid but after DECADES of eating healthy gluten diet (whole wheat and spinach sandwiches with loads of veggies and fruits and healthy meat like fish. ) Well sadly not only did I end up diagnosed celiac but I was diagnosed RCD or Refractory Celiac Sprue. No matter what I eat or how careful I am, my body attacks me anyway. It is just a matter of time until stomach aneurysm or heart failure due to damage from small intestines spreading (not to mention brain damage from Tcells attacking my brain). Long story short I have been in a relationship for over six years and had planned on marrying this woman but things have happened and I just don’t get support from her like I should. There are two kitchens and houses here and both are serverely GLUTENOUS. Cross contamination and just plain bread everywhere. Some of my family will bake breads and on those days I cannot even be in my own home. (house has two parts to it so I can escape sorta..) Well my partner is glutenous (WILL NEVER EVER DATE A GLUTEN PERSON AGAIN) and I am not. She does her best to help with CC (cross contaminations but it isn’t enough) I have explained scientifically what is occuring in my body, I have broken down that I will be dead very soon but none of it is enough for her to quit her bread lifestyle. And to make matters worse I work with my love, sadly we are on the road every day and to her gas station snacks is good enough for a normal person so it should be enough for a celiac. I have managed to survive on milk and V8 for over a year now. Most days I don’t get breakfast until 8pm or later due to work or plain having to get HER FOOD before mine and doing any work before I can even get to my food. It’s HORRIBLE and I HATE IT HERE! sadly even though i love her enough to kill myself slowly I cannot stay with her. I also recommend that ALL Celiac people ONLY DATE CELIAC diagnosed folks, it is just impossible to justify dating or being married to someone who doesn’t listen or care. I am breaking up with my almost wife of 6 years due to this disease and it sucks to be the bad guy but I cannot live this way and to EVERYONE ELSE STOP PUTTING UP WITH CRAPPY SPOUSES!
What about a spouse who doesn’t believe his step-son has it? Says he is making it up. My son is 19 now and had mild but persistent symptoms for about 2 years before his diagnosis at age 18. He had an endoscopy and that’s when it was diagnosed. He feels much better a year later after going gluten-free. My husband still says it is a made up disease. 🙁