Dear Gluten Dude: Help! How Do I Explain Celiac to my Husband?

how to explain celiac disease

Happy Celiac Awareness Month folks. In years past, I’ve always tried to do something unique for this month. One year I wrote 30 blog posts in 30 days (boy…was everyone sick of me by the time THAT month was over); another year I tried to help one specific celiac per day; and last year I launched The Faces of Celiac Disease, which I absolutely love and is still going strong.

So what am I doing this year? Drum roll please…


How’s that for disappointing? Well…I’m certainly not doing nothing. Wait…is that a double negative? Does that mean I really am doing something?? Yes…I’m doing something. I’m going to continue to do my thing and advocate as strongly as possible and help as many of my fellow celiacs as possible. While it’s nice to have a month of awareness, I’m going to keep focusing on 12 months of awareness. And while way too many celiacs are out there promoting crappy gluten-free food (this is becoming a sore point for me…that ain’t awareness folks), I’m going to keep doing what I do best.

Which leads us to today’s post. I received an email from a frustrated celiac whose husband simply does not get it. Here is what she said.

I was diagnosed w/ Celiac 3 yrs ago. My friend was diagnosed 3 yrs before that and I admit I didn’t understand how a crumb could make her sick. I obviously do now.

My husband refuses to understand all of the aspects of my disease. I made an analogy of a peanut allergy explaining cross contamination, he agrees and understands how it can kill someone. He does not see how it applies to my celiac. He doesn’t understand how its killing me slowly, the damage done every time I get glutened. He gets angry and frustrated that I have designated GF kitchen pans and utensils. He says I’m crazy, and sometimes I definitely feel crazy. He says the dishwasher would kill the gluten and the pans don’t absorb any gluten. Well, maybe that’s true, but I know that I stopped getting sick after buying a new pan and cooking my food in it. I’ve used a separate sponge to wash dishes from the beginning, I keep my butter separate and I get angry when he gets his hands into my shredded cheese.

Have I gone overboard? How do I explain the seriousness of my disease to him in a way he understands? I never ask him to cook my food for me, I always go out of my way to cook and serve gluten food for him and the kids. He also doesn’t understand how I get a skin rash on my hands after baking for the kids using flour, even though I wash my hands obsessively. Or how I can get sick from inhaling the flour when it fluffs into the air.

Am I fighting a losing battle?

A losing battle? Not sure. A tough battle? Holy moly…YES!

By saying that you once did not understand how a crumb could make a celiac sick, you seem to be defending your husband’s behavior. My two cents? There is no defense for his behavior.

There is something out there called the internet and if he wanted to learn about celiac disease and what you must do to keep safe and to keep healthy, he could. If he wanted to understand why having your own separate pots and pans is important, he could. If he wanted to know how dangerous cross-contamination can be, he could.

He is choosing not to and that sadly goes deeper than celiac disease.

Please don’t doubt yourself. You are not going overboard. It’s been 3 years and he’s still giving you hell? That sucks…plain and simple…and you don’t deserve it. You have an autoimmune disease. This is not a choice you are making.

Please show him this post. Show him other posts where I have talked about relationships and how celiac can affect the family dynamics. Hopefully, he’ll see the light.

In the meantime, put yourself first.

And please stop making separate meals for him and the kids. They can eat gluten-free. It’s not a punishment. It’s reality.

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23 thoughts on “Dear Gluten Dude: Help! How Do I Explain Celiac to my Husband?”

  1. The fact you’re forcing the info on him instead of him wanting to know says more about this than the details. Is he not supporting your journey through life? Is this about him, not you? Big red flags.
    (Sorry if it’s brutally put; however my life is infinitely better since I got rid of those kinds of people)

  2. It is difficult to understand Celiac. I still find myself looking at a sea of people and pondering why some can actually die from eating gluten while others are just fine.

    I HAVE medically diagnosed celiac. I had one foot in the grave and the other on a banana peel at time of diagnosis. My hubby took a long time to get it too.

    I have kinda stopped trying to get others to “understand”. I just do what I have to do to stay safe.

    With hubby, I flat out ask why he wants me to die! Every time he gets even a tiny bit upset over something “small” I use it as an opportunity to point illustrate how his behavior with gluten impacts me.

    I still have trouble with anemia. I have passed out from it despite being 100% gluten free. Ended up in hospital several times. Needed blood transfusion for it. At these times, I tell hubby that I will refuse the blood transfusion. Then I ask him how that feels to him. He always gets worried and talks about it being so very important and asking why I would want to refuse. I use that to point out that while he poisons me, he is causing me to have to need blood. Why should I continue with hospital stays and dangerous blood transfusions (people can have bad reactions to blood transfusions) if he wants to continue to poison me with bits of gluten.

    I hold nothing back about what a rotten thing it is to expose me IN MY OWN HOME. We have a gluten free home now. I deserve one safe place. They can eat all the gluten they want out at restaurants, parties, and other functions where I have to use self-control to maintain my LIFE. They can stand being gluten free in the house.

    I agree with the Dude. Show him posts. Be ruthless with using situations to get him to understand. This is LIFE AND DEATH. It is not some minor pain or just diarrhea. You deserve to live!
    Marriage is:
    For better or for worse
    In sickness and in health
    It is NOT 50/50 – not ever! It is almost always 99/1. This time he has to give the 99%. TOUGH! You have given 99% plenty of times. If you have children, you gave 100% during pregnancy, labor, and delivery. Asking him to put up the 99% so you can continue to LIVE is reasonable!

  3. Whatever happened to “In sickness and in health”? Is that now considered just a random bunch of words strung together because they sound cool when said out loud?

  4. I totally agree with both The Dude and Laura. There is way more going on here than celiac. Sometimes we can’t see the forest for the trees (ie: my first husband — ick!), but perhaps this is the red — really red — flag that you need to see what is really going on. Plus, assuming your children are biologically yours, they could be celiac at some point, too. I am so lucky to have a husband at present who never questioned it from the start. He even insisted that I quit cooking separately for him! And he has seen me through all the surgeries (new knees, new shoulder, new thumbs) that are a result of arthritis from 55 years of gluten. So there could be more bumps down the road than “just celiac.” I run a support group, and I strongly suggest you join one, too. Even in this day of knowledge being easily accessible on the internet, there is nothing like talking to people in your situation to give you courage, strength, and the resolve to do what needs to be done. And perhaps take him. Hearing it from “strangers” could also be of help. I hope you have a group nearby as I think it could really help you. And never stop reading The Dude! He will keep you on the right path and make you laugh all at the same time! Best to you . . .

    1. Not Celiac-related, but how do you get new thumbs!? I’ve never heard of that before. Really cool that they were able to do that for you, though!

      1. I said “new thumbs” in the interest of brevity, but it’s called basal joint arthroplasty. The pain at the base of my thumbs became unbearable — like an ice pic was stuck in me. I had no idea what was going on, so, long story short, an xray confirmed really bad arthritis. The surgery involves removing the trapezious (triangle-shaped bone) in the base of the thumb. The a tendon from the underside of the forearm is removed (don’t really need it anyway) and rolled up like an anchovy, then put in place of the bone. Of course arthritis has been scraped out of the thumb, too. Four weeks in a case, and voila — no more pain! There is PT involved; then got the other one done. It is an old operation and really works! I have found so man people with this situation and recommended it to them. And because both my thumbs and knees were bad bilaterally (and I was not a runner) I deduced that celiac was at the core. Got this confirmed in a meeting last fall with Dr. Fasano! We truly have an insidious disease!

        1. Hello Jane, I know this was a while ago, but has the thumb surgery definitely helped? My family seems to have missed the gastrointestinal illness, but they all have arthritis. I was under the impression that the thumb surgery is pretty risky.

  5. I’m so upset that you’re using flour in your kitchen. Flour REALLY doesn’t belong in a gluten-free kitchen, as it gets everywhere. The dishwasher does seem to do a pretty good job of getting things clean, as my husband doesn’t get sick off of the in-laws’ dishes, but flour is out of the question, as it floats through the air, you inhale it, and some of it inevitably gets into your digestive system. We also have a neighbor whose wife has Celiac, and I overheard him in the pet store with his little girl the other day, saying, “Now, we can’t buy this kitty litter because it’s made of wheat, and Mommy has Celiac, so this will make Mommy sick!” What a winner!

    My husband has Celiac, and I wouldn’t even dream of opening a bag of flour in our kitchen. I occasionally have a frozen burrito, but when I do, it’s wrapped in foil to bake, and doesn’t come out of that foil until I’ve eaten it! Even then, I worry that crumbs on my fingers might get on something that he might touch, so I’m thinking about quitting this. Our kitchen — and bathroom — is completely gluten-free. We use castile soap instead of soaps that have wacky grain-derived additives, and I use sweet almond oil or coconut oil as moisturizers (I do most of the cooking, so it’s essential that I not have anything hazardous to his health lurking on my skin). He used to deal with so many mysterious cross-contamination issues, but ever since we took these precautions, his health has improved so much. It’s totally worth it, as he’s a better (nay, an AMAZING) partner when he’s feeling all right.

    Husband never had to tell me to do any of these things. In fact, he’d been suffering his whole life, and both his family and his ex-girlfriend of seven years had written him off as a lazy man depressive. In fact, it was so evident that he was TRYING so hard to function, but simply couldn’t. When someone I love tells me they think something’s wrong, I trust them — why would you marry someone whose judgment you don’t trust or value? So we figured out what was wrong, and figured out how to keep him healthy, and all those who had previously written my poor husband off are now having to rework their worldviews. Assholes.

    Sorry for making this personal. Just REALLY want you to know that many — perhaps most? — people in our society lack the empathy it takes to understand other people’s suffering, other people’s stories. But — and this, I think, is at the heart of Gluten Dude’s persistence in advocating — over time, empathy can be cultivated through exposure to more information, more heartfelt stories. Even poor Gluten Dude seems to lose his resolve in the face of society’s overwhelming apathy (which rears its ugly head not only before people with Celiac, but also before victims of sexual assault and racial discrimination), but I’ve seen changes happen. It IS possible to make people understand, and if your husband isn’t mentally deranged, then with the right exposure, he’ll get it.

    Not sure what you can tell your husband, but sharing other people’s stories with him might be a good first step. My husband’s family has been constantly critical of his disease, but after two years of my advocating for him in their kitchen, they seem to have finally gotten the point — it helps, too, that his brother is in medical school now. Could your friend possibly stand up for you or explain the situation to your husband? Does your friend have a compassionate partner who could try to explain things?

    You might also try to better understand where your husband is coming from — without bending before his hurtful assertions, mind you. But why is it that someone who loves you (or purports to love you) is risking your health like this? Perhaps he’s worried that you won’t be able to enjoy life with him fully if you can’t have gluten? Or maybe he’s concerned that other people might think you’re one of those gluten-free trend people? Maybe try to locate the source of his reluctance/refusal to understand so that you can address those concerns head on.

    As for the rash on your hands, while painful rashes are a symptom of Celiac disease, it’s likely that this is caused not so much by touching flour as by ingesting (or inhaling) it. Of course, I’m no expert.

    Best of luck to you. We’re all rooting for you!

    1. “He’d been suffering his whole life, and both his family and his ex-girlfriend of seven years had written him off as a lazy man depressive. In fact, it was so evident that he was TRYING so hard to function, but simply couldn’t. When someone I love tells me they think something’s wrong, I trust them — why would you marry someone whose judgment you don’t trust or value? So we figured out what was wrong, and figured out how to keep him healthy, and all those who had previously written my poor husband off are now having to rework their worldviews. Assholes.”

      That is 10 times better than anything I have ever written Alia.

  6. This is a very sad story. It sounds like there’s no point of trying to convince your husband of your health situation. I’ve learned a long time ago that you’re not going to convince anyone of anything unless they are open to it. I encourage you to lead by your actions. Haven’t we always heard that about teaching our children. Kids don’t want to hear a sermon they want to see one. It’s the same with adults. Please put yourself first. I think some of us were taught that it’s wrong to do that for some reason. It’s YOUR health!! Do whatever it takes to keep YOU happy and healthy. I also agree with Gluten Dude. Please stop making separate meals for your other family members. You’re a mom and a wife not a maid and house servant. If you’re doing all (or most) of the shopping, cooking and cleaning what’s the problem? We teach others how to treat us and you MUST STAND UP FOR YOURSELF!!! Be strong!!! I hate to tell you but Laura makes a valid point. It sounds like there’s deeper issues here. Please take care of yourself. My prayers are with you.

  7. At first, my husband also had a hard time understanding the crumb issue, so I told him we’d just put one crumb of rat poison in his food everyday. then he got it. However, I kept getting sick, and so did both my Celiac kids, even though my husband ( the only gluten eating one of us) did understand and try very hard; until we finally went totally GF. threw out everything that was possibly glutenous.
    The point is that your husband has to make the choice to listen and understand. He’s choosing not to. I don’t know how to get through to someone like that.

  8. I understand what you mean about feeling like you have to defend yourself against taking precautions that might seem crazy to people who don’t have celiac. You have NOT gone overboard. It is because you are more informed and see the seriousness of the situation. You are taking responsibility. It can seem illogical to some people that you need to take such precautions, because they don’t see gluten as the poison that it is to you. Once they make that leap in understanding, that for you, it IS poison, I think it changes things. He wouldn’t want you handling rat poison with the same hands that make his food! Or floofing that stuff into the air baking! Would he? Oh, you could wash your hands afterward, wipe down the counters, and wash the dishes, right? Perhaps none of it will get into your food, but who would take that chance if you don’t have to? Unless there’s some reason you HAVE to have rat poison in the kitchen,…you absolutely cannot live without it, why would you? I know that’s not a perfect analogy but maybe it helps.

    You could keep baking with wheat flour, and take precautions, but it is very hard to be safe in that situation. Flour hangs in the air, and breathing it in is the same as ingesting it by mouth. For him, wheat is normal, but for you it’s like playing with rat poison. It may not make you sick immediately, but over time, you are taking so many chances. Perhaps he doesn’t realize the diseases that come along as a result of continuing to consume gluten.

    Physical issues aside, you are suffering mentally and emotionally as a result of his apathy and lack of understanding. Have you thought about couples counseling? Would he be open to that? There’s some kind of disconnect going on here.

    Do you feel empowered to make new kitchen rules? Rules that are not wishy-washy or optional? Could you make rules based on what you need to feel safe? Since you are in charge of the kitchen, and you are the one who is informed about celiac. I think it falls to you to take control of your kitchen. We are still navigating exactly how to handle situations as they arise, but we are in agreement that it is necessary to take few risks as possible. Bless you as you tackle advocating for yourself!

  9. You are not crazy! You are right. My husband did not believe me at first either. In fact, two years in he still argued with me about the grill. I told him the grill had to be cleaned because he grilled some hamburger buns last time. He said, ” I’ll get it hot and it will burn the gluten out.” I told him that it didn’t work that way and that I needed it cleaned. He was surprised when I bought my own toaster after yet another cross contamination with toast. He finally took me seriously when cross contamination halted his sex life. I always require him to brush thoroughly and use mouth wash before I’ll kiss him (and I’m still suspect if he just ate a lot of bread). The first time I felt horrible after kissing, he thought I was crazy (I sort of did too) but the next time…it was obvious that it triggered a reaction and I said no more. He took it more seriously after that. (But I still catch him mindlessly reaching into chip bags after eating a sandwich….I try to keep my snacks separate just in case. Ugh!)

  10. My home is gluten free. Doubt the need? Move on. Doubting my disease is doubting me. Doubting my ability to know what I need. I dont need that in my life

  11. It took a few weeks for my family to come on board with me going 100% gluten. If I get glutened, beside crapping my guts out- I also breakout with the celiac rash, DH. It took another breakout for me to get serious about cross contamination. I thought eating gluten free was enough-it’s not!! I just didn’t want to deal with my family in turning my kitchen upside down. (9-5 adults 4 grandchildren living together) but now that they see me suffering with DH rash again they are willing to make the changes need to keep Grandma healthy. I wish I would have spoken up and done this a year ago when I started eating gluten free. It’s almost like I felt guilty that they had t make changes too. My bad!! So here I am again full of this horrific itching rash -Getting my kitchen together. I’m Going on Amazon to order from your products. I Thank God for this site and for your passion Mr. Dude.

    1. Betsy, With your DH issues be sure you are checking your personal care products — lotion, shampoo, make-up, etc. And stay away from oats! They are in Aveno products as well as others. I can’t use Pantene or Nexxus either. This could be a source of reoccurring skin issues. I even had a soap that had oatmeal in it, and the DH came back on my eyelids from it! Glad your household is all on the same page; it takes away a lot of stress and binds you all with compassion. Kids need to learn that, too! Best to you, Jane

  12. Thank you Jane. I just gave away two new bottles of Pantene shampoo and conditioner. Everything else except toilet paper I’ve changed. Thank you again.

  13. Flour?!? Since my sons were diagnosed there is no gluten flour in the house. We have Pitas in the freezer (pitas are better than bread because they have less crumbs) and I wash my hands obsessively after daring to eat one in the house and that’s pretty much it. but we don’t have separate dishes.

  14. I appreciate ALL these comments. I found out late in life that I was a Celiac and although my husband gets it he says he is not changing his entire diet for me – that hurts. My mother has a long list of problems in her family related to this and she now lives with us but it doesn’t affect her she says and she totally does not get it and constantly wants carbs full of gluten and is NOT careful about contamination – ugh, Yah – she is diabetic and her IBS is better living with us as she does get 90% of her diet gluten free. I bought my husband a new Black Stone grill for our Anniversary and he was upset when I gasped at him when he said he’d try to keep 1/2 of it gluten free? He tries but he gets angry with me as he says I am too protective or too set in my ways about my diet — He wonders why I won’t kiss him after he has eat Oreo cookies – I tell him it makes me sick and I so wish he would bend on that one. I know this topic doesn’t get talked about alot — but who of you can kiss your mate after they have gobbled down cookies, a Subway sandwich, etc. and not feel the gluten reaction? He says a little won’t hurt me — He says he will eat my food, which I cook ALOT but he will have his food drawer, his crackers, his donuts, his cookies and he is NOT giving that up ever. I can relate to everyone and cheer you on for the journey. I now have two granddaughters that are clearly Celiac and I so wish for them a better journey. I had to endure two breast surgeries, IBS and then three Laparoscopic surgeries plus a hysterectomy and after losing 20 pounds and weighing in at 82 pounds we found it – the Celiac – BINGO — thanks to of all doctors – a dermatologist! Be advocates, be safe and wishing all good health.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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