– Winston Churchill
I am doubly blessed when it comes to family life. I was raised in a pretty cool family with three older brothers and parents who held their act together just long enough to raise four respectable adults. And now I am the husband of a woman who I love more than life itself and I get to raise two daughters of my own who I have watched in amazement as they have become young adults.
Yes…after growing up in a male-dominate household, I’m now surrounded by women and I wouldn’t have it any other way. If you read my blog (bless your little hearts), you know them as Mrs. Dude and the Dudettes.
This is our celiac story.
In April of 2007, I was diagnosed with bladder cancer. The Dudettes were 11 and 8. While it was a major health scare and a huge “holy crap” moment in my life, thankfully it was not life-threatening so Mrs. Dude and I decided not to tell the kids that I had cancer because that word has such connotations attached to it. Whenever I came back from a procedure, we would just tell them that daddy has a few health issues and the doctors are making sure he’s all better. The word “cancer” never entered our vocabulary with them. I suppose they’ll find out when they read this article.
Just kidding…we told them a few years later.
When I was diagnosed with celiac disease six months later (yeah…good times…let’s not even get started on my pulmonary embolisms in 2008.), Mrs. Dude and I were thrown for a loss. We had never heard of the disease or the word gluten. You see, when you get diagnosed with celiac disease, the only instructions you receive from the doctor are “don’t eat gluten ever again.” And I’m thinking, “Uummm…ok…no problem. By the way, what the heck is gluten??”
It was a new world we were entering…one that seemed absolutely overwhelming. Not only did we need to learn what I could no longer eat, but we had to make sure I was safe in my own house. So Mrs. Dude did what she does best. She took complete control of the situation and kicked total booty. She immersed herself in learning everything she needed to know about this new constant in our life. Before you know it, I had my own counter in our kitchen; my own toaster; my own blue sponge to wash my dishes; my own set of pots and pans; my own cabinet for my food, my own silverware drawer and my own shelf in the fridge. If I was going to get glutened in my own house, it would not be due to carelessness.
Enter the Dudettes. How do we get two pre-teens to understand the seriousness of daddy’s new illness? Upon my diagnosis, we sat them down and explained to them what celiac disease was and how I can’t eat gluten anymore. We told them how important this was and that even a crumb could make me sick. And then we walked them around the kitchen and showed them all the new “gluten-free” labels placed throughout and that means those areas are off-limits to them. Then we explained all the new rules. For example, they couldn’t put their hands directly in the ice bin anymore unless they had washed them first. They couldn’t use my peanut butter for their sandwiches. They couldn’t drink daddy’s beer. (Just seeing if you’re still paying attention.)
And you know what? They got it. They never blinked. And before long, it became the new normal. The transition was made easier because our family came together for a single cause of keeping me healthy. I know how lucky I am, as I have received so many disturbing emails from fellow celiacs whose families don’t take the disease seriously. From the father who doesn’t believe in celiac disease so he feeds his daughter gluten to the family of doctors who dismiss their sister’s celiac disease because it’s just a fad disease. Honestly…you can’t make this stuff up.
The family support is so huge. I just don’t know where I’d be without it.
Now…what is it like from the Dudettes’ perspective? That’s a darn good question. I asked both of my kids to write a little something for this article, describing what it’s been like having a father with celiac disease. Here’s what they said.
Dudette #1: “I was in middle school when I found out my dad had celiac disease. I remember going into school the next day and telling my friends my dad is allergic to glucose. [Dude note: Gotta love it!] At first it was a challenge. I had to adapt to all these new kitchen rules like “don’t touch the top shelf of the fridge, that’s dads shelf”, or “wash your hands before you go on his computer”. The hardest part of having a father with celiac is when he gets sick and all of these thoughts take over my mind worrying if I was the one who got him “glutened” this time. It’s hard watching someone you love constantly feeling sick and run down so often, but my dad is the strongest man I know and doesn’t let celiac take over his life.”
Dudette #2: “I would be lying if I said having my dad be diagnosed with Celiac didn’t change my lifestyle, but I would also be lying if I said all of those changes were negative. I’ll be honest, it was difficult at first. It definitely affected the entire family. But despite the hard encounters my dad has been forced to face, things have gotten better. Not in the sense that he feels amazing 24/7, or even most of the time, just in the way that my family and I have become more aware overall. I think the hardest part of living with someone who has celiac is just seeing them struggle daily. My dad being diagnosed with celiac definitely changed some aspects of my home life. Yet, he is still the same amazing person he was six years ago, in spite of all the horrors he went through. Celiac may have changed my family, but it didn’t affect my love and appreciation for the man who has to live with it.”
And now let’s hear from the woman who keeps this household running like a fine-tuned engine. What impact has celiac disease had on her life?
Mrs. Dude: “The day my husband’s diagnosis came in was the end of life as we knew it. I knew going forward, everything would change.
And it did.
I will be honest, I mourned along with him. He mourned the loss of NY bagels, real pizza and a good IPA. I mourned the loss of our spontaneous way of living. No more just grabbing a drink and something to eat at that cute new place. Now it takes a ton more work, planning and research to be that cute spontaneous couple.
I had so many thoughts zoom through my head at once. How would we eat out? Socialize? Travel? How in the world could we keep him safe? The world was full of gluten at every turn. And cross contamination??? Are you kidding me??!! Grrrr!! I was overwhelmed!
It has been quite the journey. Not as simple as we were told. “Avoid gluten and you will feel better”. Unfortunately this stubborn little autoimmune has a mind of its own. It angers me. It saddens me. This disease has robbed me of my best friend ALOT of the time. I never thought this would be my competition. My fun-loving, vivacious, intelligent husband turns into a cranky, severely exhausted, brain-fogged twit that also suffers physically (I will spare those unpleasant details). Did I mention cranky?
To sum things up, this is a crappy, unappreciated disease that has challenged me. I will fight it to the end. No one messes with my Dude and gets away with it!”
Like I said…I’m blessed with an amazing family!
I hope you are too.
45 thoughts on “Celiac Disease: It's All in the Family”
It’s great to read your story and how your family has helped you go through this. I’m fortunately blessed with a great boyfriend who makes everything much easier! I was diagnosed this February, and today I’m going to see another doctor to have a second opinion. I have no symptoms at all, something I’m thankful about, so I find it difficult to believe I have celiac disease. From the moment I was diagnosed I started the gluten free diet and I’m taking as much care as possible, though I sometimes find it difficult. Reading about your experiences help me learn about this new life I have to get used to. Thanks for sharing!
The support is so key…
Aren’t we blessed?!! I have an amazing family as well. And as you may recall in a private message I sent you ages ago, my dad also developed bladder cancer, then celiac disease (along with a host of other health problems). His celiac disease was undiagnosed. Very sad. So glad you’re on the right path with your challenges and nothing’s better than having a committed team of helpers (and cute ones at that). Best wishes to you and your lovely family!
Onward indeed Melissa…thanks!
“cranky, severely exhausted, brain-fogged twit that also suffers physically”
You too, huh?
I live by myself, but when I got diagnosed, my dad was living with me. He understood what was going on, but getting an 83 year old man to suddenly change his habits is near impossible. He tried, but I’d find crumbs in the butter, etc. (he didn’t move out because of the celiac. He lives a couple of blocks away now so he’s still here a lot.)
Pretty much all of my friends and family that know I have Celiac also are supportive. It’s not the end of the world. It IS the end of a lifestyle and the start of a new one.
““cranky, severely exhausted, brain-fogged twit that also suffers physically””
Today…you have no idea.
Gratitude and lots of it, for the compassion, the mindful habits and the humour that my family have shown me since diagnosis. I’ve been in a household of males (the sons have since launched) for this odyssey and I am humbled by their support.
When the offspring have discovered a new beer (IPA’s are favorites), they’ll tell me that I’ll love the smell -that’s right, I’ve taken to sniffing beer! My husband tells me when he is stressed at work he reminds himself that I am well. Who does that!?!
I am also fortunate enough to have my elderly parents around and trust me, they knew even less about gluten than lots but they have been onside from the start.
We recently visited our younger son and his partner (a first for us as the “in-laws”) and they had specifically bought food with me in mind ( I have several other food allergies) even though I had assured them I’d have it covered.
Now, on paper these simple gestures seem insignificant but not to those of us whose very health depends on them. It literally brings tears to my eyes when a 21 year old buys a new bottle of jam because theirs is contaminated.
I am well and truly blessed.
Show off. I mean…awesome Sue 😉
I know right! I just finished doing the happy dance ‘cos I found a place that carries this new non-dairy cream cheese I tried recently. That’s right, I now sniff beer and eat “fake” cream cheese. I’m FUN at a party 🙂
Oh Sue, how blessed you are! It shows what a wonderful person and a terrific parent you are. I may be wrong, but it seems like you’d be great fun at parties! Smelling beer and eating fake cream cheese, how could you not be full of fun!
Hi Morgan! I just read your post and see that you too are a “gf vegan” baked-goods person. You could say we’re “homies”…
What a ride, eh? Yes, we are lucky to have found our people AND this website.
Have a good one.
My wife. There are no words for how supportive and clever she’s been in making veggie laden delicious, healthy GF meals that are so important once a celiac gets into the over fifty club. As a cook, she could beat the snot out of Rachel Ray and a few others. I’m a fortunate guy.
“…beat the snot out of Rachael Ray” 🙂
What a blessing to have a family committed to your well-being with understanding and support through all the CHANGE while also keeping focused on what is important: the love and appreciation for who you are, not what you have. Congratulations!
Really enjoyed the article! Great to put smiling faces with “Dude, Mrs. Dude & the Dudettes” – wonderful family!
My wife immediately bonded with Mrs Dude over her description of Mr Dude. I was given the nickname “The Grizzley Bear” – a big mean grizzley pops up on the TV screen and my family says “looks there’s Daddy”. Thankfully, not as often now, since that description was not accurate pre-Celiac.
GD, your and everyone else’s sharing of their journey on this blog has been very helpful for me to understand my current plight. I keep thinking that after 16 months of GF with limited cross contamination events, I would be much better by now, which is only partially true. It really is a lot to figure out that takes a lot of time when set backs have an exponential effect.
Thanks to everyone in this community for the inspiration & especially to the Gluten Dude for bringing us together! The encouragement certainly helps our family and gives me hope to get back to feeling normal on most days in the future.
I loved reading your family story! Will have to get my hands on a copy of that Simply Gluten-Free issue. Sounds like you guys have really come a long way since “dad’s allergic to glucose.” 🙂
I too feel endlessly lucky to have a supportive family (and friends). I mean, my little sister was fully prepared to go gluten-free just for the sake of living with me. (Of course, she then found out she has celiac herself and would have needed to go GF anyway, so…bummer…but it’s the thought that counts.) My parents have also made their house totally celiac-proof, even though we’re only at home a few times a year.
All my life I had a sneaking suspicion my family was completely amazing, but their response to this disease has totally confirmed it.
Thanks for posting your story and the reasons why we can’t eat wheat. Hope it dispels a lot of myths about Celiac and needing to eat GF food.
I got my diagnosis almost 3 years ago and my Gastro wasn’t at all gentle or supportive about it. He just “dropped the bomb” and rushed out of the room. No time for questions or sensitivity, he just angrily said, “don’t eat wheat”, as if I was an inconvenience to him (this person is no longer my GI). My extended family hasn’t been very supportive (but what can I expect from WHEAT farmers?!) They treated me like a pariah because I can’t eat their crop, and I haven’t talked to them since a cousin’s wedding or an uncle’s funeral, where, of course, wheat abounded. But my immediate family has come around, and I’ve had them try my cookies, bread, and other products (but no pizza yet–give it time 🙂 ).
Most of my friends and coworkers have been fantastic. They understand when I need to bring my own food and suggest GF products (Epicure, etc), and some of them have asked me where to get GF food (for themselves or their own family members/friends that need GF food) and I gladly share what I know.
Kudos to the “Dudettes” and “Mrs. Dude” for supporting you so willingly.
I could not have said it better myself. Its so wonderful to have family support. High Fives all around to your family. Remembering that its not all about us helps me reset myself when I feel sorry for myself or get a twinge of my former life. Thank you Gluten Dude and to your family because it helps us.
I love this. Your family is inspirational. It’s all well and good for a person with the disease to make changes, and even for the mother of such a person, but for kids and a spouse to do it so willingly, that is something else. Your kids will be so valuable as friends to anyone, but especially to others with conditions that require a little extra consideration and kindness. In fact, I wish I could hire them as babysitters. For every celiac/food allergic person out there, there is a whole family/clan/village of people learning and gaining valuable insights into what it’s like. The next generation will be completely different and I can’t wait to see it. (Unless of course we just find cures, which I could handle too.) Thanks for sharing.
I can say family support is crucial. Thanks to lack of medical support (negligence), my wife’s diagnosis came years too late, and sons’ right behind. We tried working with two kitchens for a short period, and she would have a flare-up and I would feel like I made her sick. I couldn’t stand it. One day I realized there is only one way to support my celiacs…a gluten free household. It wasn’t tough, compared to what my celiacs had to endure, so once we committed it was pretty easy. I can say that supporting wasn’t really sacrificing, just making an adjustment that my family is super thankful for!
That’s because you’re an amazing, sweet guy who is married to a truly inspirational, compassionate and strong woman. I am blessed to have her in my life and call her my friend.
It’s not a sacrifice when you love someone without reservation.
You are ‘da man, D. and I just love the Gotta Ski family. 🙂
Well lookie there…Hi Honey!
Can never thank you enough for all you have done to make our little corner of the world a better place.
Haven’t always been lucky with health…but sure have been blessed with wonderful, supportive hubs, kids and friends : )
Ugh, that is freakin’ adorable. You have an amazing family, Dude. I can only hope that when someday I start my own, they’ll be as amazing and supportive as yours.
One celiac friend made her entire home a gluten free zone. She and her children are celiacs. Only her husband is not, but he eats gluten free right along with them. No gluten is allowed in the home with the exception of one corner of the basement where the husband is allowed to keep his beer!
She’s still had her problems. She was recently glutened and she and her doctor suspects that it happened during a stay at a hospital. You wouldn’t think that would be a problem.
And I must say I remember the “just eat gluten free” lecture. This is where doctors really fall down in treating this disease. We really need more support to do this. One sheet of paper listing ingredients to avoid isn’t enough support — not even close to enough! Help from a dietician would have made a world of difference, at least for me.
I’m ceoliac too, just one of the three sibling’s out of four who have been diagnosed! I was very interested when I noticed that a few of you have had bladder cancer then diagnosed ceoliac. My Dad had bladder cancer two years ago, I was diagnosed last year, we’ve thought about whether its hereditary or not. My mum was recently tested and came back negative but now I’m going to insist that my Dad gets tested!! He shows a lot of symptoms so even though he’s 82! I’m going to insist!
Thanks for sharing, it’s opened my eyes a lot today :0)))
Good luck to you, Sarahjayne, in your efforts to get your father tested but don’t be surprised if you are met with push back on this. My family, excluding my husband, suck. There was no support for me and I am the “tolerated outcast”. I am talking about my mother, father and siblings.
You see, I am the lucky recipient of a double DQ2 Celiac gene. It’s on both sides of my family and when you look at the lot of them, it isn’t hard to see they all suffer from some degree of a gluten issue. I’m the full blown Celiac who nearly died from it. Most refuse to be tested and those who have, only had one test done, not the complete panel. The one test may have been negative, I don’t know as they will not show me any testing results. My mother and father are seriously tanking from gluten, with many symptoms and weight loss that is becoming scary yet……my mother becomes angry when anyone brings it up and my father doesn’t know any better because he is in the throes of severe Celiac dementia and barely knows his children. I have suffered their ridicule, eye rolls and all the rest over this so I have given up and do not have much of relationship with any of them.
On to my husband…….he may have a gluten problem but testing
was done incorrectly TWICE so he just went gluten free, partly as a test for himself and partly to keep me from getting sick. He did not have many symptoms at all except for extreme weight loss, which stopped on the gf diet. But he now scans gf cook books for recipes and bakes the best damn gf bread out there…..for me.
He always makes sure I have good food to eat and its safe. He does not complain about any of the crap he has to do and that makes up for the idiot clan that raised me. Yes, they are idiots because they all have serious AI diseases and will not go gf to get better. I will never understand that……God Bless those who support their Celiac’s.
Gem and I have discussed this issue with our family many times–our frustration with and sadness over our inability to get them to see what is right before their eyes. I also have a Double DQ2 gene and I have informed both sides of my family and practically begged some of them to be tested. NOPE. (they think I am the only one with this thing– despite their various AI diseases and many symptoms)
My wise husband has said “Give it up, Gin….they will have to be pushed to the wall as you were before they take it seriously, babe”.
He’s right….. sigh…..
It’s interesting. My immediate family has been tested with my younger brother and I the only ones coming up positive. My niece, who is wise beyond her years, got herself and her kids tested. The rest of the family on my mom’s side- and it’s a big ol’ Irish family- looks at me like they’re struck dumb when I suggest it’s possibly what caused the cancers that ran rampant through my mom and her sibs. All but one are now deceased.
I think it is difficult for anyone with diabetes or thyroid disease or hypertension or even cancer to believe that those health issues may actually be linked to or caused by an UNDERLYING issue..i.e gluten/celiac. No doctor ever thinks this way, so why would the average lay person? I know I never did…until now.
Sadly, Irish heritage = good chance of developing celiac. 🙁
And I am so sorry for your many losses, Ken.
When I say to a fellow celiac “it is good you were diagnosed early” I really mean it. It may have stopped the seemingly inevitable progression of other disease states or miscarriages or so many complications.
In this regard, an early diagnosed celiac is “lucky”.
I read your story in Simply Gluten Free and I already knew your wife was an incredibly supportive and loving person , 🙂 but it is very cool to learn more about your girls, too. You have a lovely family.
My Dad was certainly an undiagnosed celiac, and it surely killed him and my Mom went GF after my DX, with her doc’s blessing and she has never felt better. This thing was making her feel bad her whole life but like me, she just thought,” it’s just the way it is”. She’s 87 and in better shape than most people I know.
For those who know me, it is no surprise to hear me say that I simply would not have survived what happened to me had it not been for my
husband. He’s my best friend, my rock and my heartbeat. I kept fighting for my life–for him, for us. He always believed we would find the answer to what was killing me and he drove me to endless doctor appts.–in 3 different states–for 3 years. He sat with me through so many horrible tests, held my hand while I was pinched, poked, prodded, scanned and stuck with EMG needles, held my head when I barfed and propped me on the loo when I was too weak to sit up straight. In the end, I figured it out myself (which is a miracle as my brain was not really working at top speed by then) but he was the one who told me that “tomorrow would be better”. I believed him and never gave up. .After diagnosis, he went GF with me voluntarily and we celebrate the fact that I am alive and kicking…and enjoying every single day for the gift that it is… 🙂
Talk about loving someone unconditionally..?. yup, that’s my man.
Thanks for sharing so much of yourself with us, GD. By sharing your story and allowing others to share theirs as well, it makes this disease less baffling and we see we are never alone because we have a community of celiacs to lean on. In fact, some of the best people I know, I met because of celiac…. and they are my family now.
We’re so lucky, aren’t we? 😉
Yes. We sure are.
Hi, I live in the UK and was diagnosed in October last year, it’s been super hard! But my family are there, when they cook a meal they try and find an alternative for me so I’m eating similar to them.
Like stir fry, dad gets me gluten free rice noodles and a gluten free oyster sauce, cooks mine first and then does everyone else’s 🙂
I still get glutened every now and then by accident, I.e. Partner eats crisps on desk, leaves crumbs, I then touch the desk to clean it then without thinking eat my crisps!! Silly little mistakes but I guess I’ll learn.
This blog has helped me through though, knowing there is so many people now with coeliac disease and I’m not the only one 🙂
Jenny from London!!
I too am thankful for a supportive family. In recent weeks/months, I realized I was getting glutened more and more often when I’d eat meals that my mom prepared at her house. I’d started going gluten-free in 2012 and for the most part had been fine, except for really obvious careless mistakes, until recently. I believe my body started becoming more and more sensitive to the gluten I was still being exposed to. My mom tried really hard to accommodate me by making sure to use glass and other non-porous dishes/utensils when making things I could eat, washing dishes in the dishwasher, etc. However, the glutenings would still happen. At times I’d be fine and at others I wouldn’t. I finally realized I probably wouldn’t be able to eat food prepared in a kitchen that’s not gluten-free. There’s just too much of a cross-contamination risk. I’d decided long ago not to eat out at restaurants for this same reason. I do have food at my mom’s that I could fix in a pinch when I’m there, after thoroughly cleaning all surfaces, dishes, etc. that I need to use, but other than that, I’m just going to have to take my own food whenever I eat at someone else’s home. We do still eat Sunday lunch together as a family, and we have those meals at my house now. My mom seems fine, thankfully, with bringing over uncontaminated or unopened ingredients and preparing the food there. Of course, I help in any way I can because I know it’s not an easy thing to do. My parents have also subscribed to Jane Anderson’s Celiac Disease/Gluten Sensitivity newsletter on about.com to stay informed about gluten issues. In a few more weeks, we go on vacation together, and it’ll be the first time sharing a home and a kitchen since I’ve gone gluten-free. I’m hoping it will go well, and I know I will have my family’s support and help.
I already knew Mrs. Dude was awesome and happy to hear from the Dudettes. You are truly blessed with an amazing family! I love this site and the amazing community 🙂
Great post. It’s important to take time to express gratitude for the people who support us in between the rants! You have an awesome and amazing family. It’s been one year for me since I eliminated gluten after self-diagnosing (you had a Dr. diagnose you??!) and I’m feeling so much better. Not 100% yet , but getting better slowly. I view it as a change in lifestyle, not the end of a life. It doesn’t have to end life as we know it. Monday night I got a barbecue plate from Smithfield’s and I feel better today than I did Monday. I ‘d know it by now if it made me sick!
Thanks for sharing Dude! Beautiful family full of incredible people. Maybe you should rent your family out to newly diagnosed folks!!!
I’ll open it up for discussion at the next family gathering 😉
When I was diagnosed as being celiac along with being allergic to eggs, dairy and chicken, my husband was and is super supportive. He has his own toaster, and whenever he needs to use the vegan butter for something gluten, he pulls a dab out and puts it on his plate keeping the rest of the container safe for me to use, same with the peanut butter and jam. He no longer eats chicken, and makes his own eggs. He is a total champ, and life wouldnt be the same without him.
Immediate family has been great, but as a thirty something single person, I realize the health problems, lifestyle issues, and inconvenience means be prepared to be single forever. Consider yourself lucky GD, for a lot of us, there won’t be that wife and family to help out – we have to make a go of it alone.
Oh, this is so isolating! What your health will do is separate those who aren’t worth spending any energy on from those who are “worthwhile”.
Take care of yourself first and get stronger. Seek out people who are on a similar path as yourself.
Be well. It can get better.
Sue in Alberta, I hear you. I’ve had severe environmental allergies all my life, and that weeds out the not-so-true friends – and also eliminates socializing at most people’s homes. Problem is, there’s times you wish it didn’t weed out so many people! 🙂 Really miss going out to restaurants, bars, met some great people there and really had a “Cheers” environment. But I’m not a big drinker, and most restaurants/bars frown on people sitting there by themselves and drinking water, but with a bunch of dietary restrictions, eating out is hard. It was more fun than sitting home bored and alone most nights for sure though!
Unrelated, but I’ve wondered about this since diagnosis – living in a wheat growing area like Alberta, how do you keep yourself safe at harvest time?
There’s no avoiding anything airborne. The ambient air quality is something we just can’t avoid. When you’ve got every seasonal allergy going, there isn’t really an optimum time, I’ve found.
Building up your overall health is an approach but otherwise, I’m stuck for an answer.
Stay the course.
““cranky, severely exhausted, brain-fogged twit that also suffers physically””
Oh. my. gosh!
My husband can sure relate with your wife! The fatigue and brain fog can completely debilitate me, and he’s so good to go with the flow!
He’s incredibly supportive and eats whatever I cook, so he’s pretty much gone gluten free, too, except when he has a meal out at meetings, etc.
For 20 years, I’ve researched how to treat my health issues: gall bladder, thyroid, interstitial cystitis, endometriosis, chronic fatigue, fibromyalgia, and ultimately, gluten and dairy sensitivity. In the beginning on my journey I trusted the standard American medical system. Now I’ve learned that I can get better results through proper nutrition and supplements.
Keep up your good work. I so enjoy your blog.