As you know, I get emails. Lots and lots of emails. And I cannot tell you how many I receive from people who do not get support from their partners when they get diagnosed with celiac disease. It drives me batty. 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.”
“My husband refuses to take any extra precautions in the house to keep me safe.”
So two questions:
- Why does it always seem to be the husband who lacks the compassion? Actually, don’t answer that…or if you do, be gentle.
- 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 11 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 partner 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 partner. Suggesting? Maybe. But advocating…no.
But if your partner 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.
Join a celiac Facebook page.
Connect with celiac advocates on social media.
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 partner, but I’m not half bad.
As a wheat-eating husband of an otherwise celiac family, the attitude of these uncaring partners abhors me. I can’t imagine subjecting my family to the pain of neglect and indifference. That’s not love.
Is this love, is this love, is this love
Is this love that I’m feelin’?
No…it’s not.
I’ve had two different significant others in the 12 years since I’ve been diagnosed. I’ve been fortunate to not only have supportive partners but those who would advocate for me when I just didn’t feel like explaining it to umpteenth waiter or waitress about the burden of our disease.
But I would totally expect that kind of support because that’s the kind of support I would give. So for those who have unsupportive partners- what is the root cause? Are they uneducated? Narcissistic? Or just not in love enough? Because in my book, if you love someone, you’re not going to ignore something that could make them sick or unhealthy. Celiac folks- you deserve better. This disease is stressful enough without a selfish partner to deal with. ♥️
I don’t understand how some partners are unable (unwilling?) to support someone in coping with their disease, but for those who are in that situation I am glad you made this post, Dude. Sometimes we resign ourselves to lack of support, or even abuse, until we hear “That is not okay! You deserve support!” enough times to seek the support we deserve. Also, I am thankful you posted this because it made me remember how much support I get at home. I made sure to take the time to thank my husband for being awesome!
I love my husband, and he’s usually very understanding, but with this topic sometimes not so much. This has led to a few long drawn out arguments where I’ve had to repeatedly explain that I’m not overreacting about avoiding gluten. I understand that he gets frustrated that I will only go to 4 local restaurants, and that 2 of them are expensive so we rarely go to them. However, he seems to be coming around.. can’t remember the last time he suggested that “a little gluten shouldn’t matter”, or that heat will somehow magically destroy gluten. So I guess with some people it just takes time and patience.
I followed this blog for years, and always found it so encouraging and informative. I am thirty-five, and was very lucky to be diagnosed in the eighties when I was only two years old – we lived in the Seattle area where much of the early research was being done, and doctors thankfully did the appropriate tests when they noticed I had temporarily stopped growing. While I am SO thankful to be healthy and to have family and friends who are extremely supportive and understanding, it can be a bit tough never knowing the spontaneity of dating without celiac disease. I still have a ton of anxiety over rejection when it comes to dating (on top of that normal fear of rejection!). But in dating, I have often made the mistake of trying to hide my celiac disease as long as possible from pure fear, from being sick of hearing someone say “but I have a friend with celiac who eats out here and cross-contamination doesn’t bother him,” or shame from just the dead silence when I suggest an activity or coffee shop over a romanticized ideal of a dinner date. So, I am so thankful for this post, since I had not previously thought of finding emotional support from other celiacs, which I think might lift my spirits a little when it comes to feeling a bit left out of the dating world – and maybe that feeling of isolation won’t be permanent, if I somehow find a partner who is as supportive as my friends and family. Thank you for a post that has made me feel like there are others in the same boat!
Community is what it’s all about. And no need to hide your disease (though I understand the rationale).
I was diagnosed in January 2019.
I’ve been with my partner since May 2018. I’ve been worried around the house because he eats gluten, leaves the cutting board out with all the crumbs, touches the remotes, and shared items in the kitchen. I get paranoid, and end up spraying alcohol on everything mainly because I’ve been feeling “sick” for a few weeks now. It’s exhausting and frustrating to not be well, where the foods that are suppose to nurrish me don’t go down well or hurt. He thinks it’s all in my head and that as long as I’m not directly eating the food, he doesn’t have to be careful with what he touches here and there. Am I just being paranoid? I didn’t used to need to clean everything, but since I continue to feel sick I can’t seem to pin point what it could be besides gluten cross contamination. As for him, he’s pretty determined in his perspective that he’s not the one who needs to adjust, and that my overthinking is what’s getting me sick.
You are NOT being paranoid Rose. He is being inconsiderate. Your body is telling you something. Cross-contamination is real and he needs to change his habits.