Now here is a subject I have not pondered before and it comes from an email received over the weekend (shown below with his permission).
Hey, Dude. Sorry, I couldn’t find your real name. I’m new to the site which I was directed to by my girlfriend. She has been diagnosed for close to 2 years now, and I have been with her since. I don’t really know why i’m asking for advice but I really want to help her and not let her down. I just need some help in one area. When she says to me “I don’t feel well”, “My tummy hurts” or “I can’t really think straight”, what is my best option? Do I just rub her back and talk her through it, or sit silently. I’ve done many things and it’s usually a hit or miss. Any help would be great. – Chris
Chris…you obviously want to be there for her. And as long as she knows that, she’s in good shape.
I know Mrs. Dude will sometimes say I always try to find answers when something is troubling her, but mostly, what she really needs is for me to just listen.
It can be a total grind for those dealing with a celiac in their life. A lot of us don’t feel well much of the time. We hate being a burden on other people. And we HATE complaining about it.
I’m sure Mrs. Dude gets absolutely sick of it at times.
You’ll have moments where you are sick of it too. It’s cool. Bury your head in a pillow and let out a barbaric yawp (ten points to anyone who can tell me what movie that’s from).
Do what you gotta do to let out your frustrations.
Celiac disease affects everyone.
Ok…I’ll open this question up to the floor. If you’re having a bad celiac day, what actions or words from your other half seem to work for you?
Sometimes we all have a tendancy to push through it. Sometimes we have no choice but to push through the day when we are feeling unwell. When it’s possible, give her the out and let her off the hook for whatever responsibility might be silently plaguing her. Tell her, hey it’s okay, just go to bed if that’s what you need to do and I’ll handle everything. Whatever everything may be, maybe it’s the laundry or the shopping or the dishes or eventually the kids. Just give her the out to go hide if that’s what she needs to do.
That reminds me of a card my father-in-law gave to my mother-in-law on Mother’s Day this year.
On the cover it said something like “It’s your special day. Just relax and I’ll take care of everything.”
Then you open the card and it says:
“Where is everything?”
LMBO Dude, that card is soooo my husband!
The best thing my husband did for me (just this year) was to go gluten free with me… but it took poisoning me for a straight week, seeing me get sicker and sicker as the days went by, and it taking 3 full weeks for me to recover. How, you might ask? Simply by kissing me after he had consumed something that had gluten in it! Just the gluten left on his lips was enough to make me that sick, although we didn’t know it at the time.
Now, absolutely no gluten enters the house, so there’s no chance of cross-contamination. If he must have something with gluten in it, he eats it out in the garage, and doesn’t kiss me at all until he thoroughly brushes his teeth and rinses with mouthwash. Just knowing that my house is safe from contamination puts my mind at ease. Then, I know without a doubt, if I get glutenized, it’s from something I’ve eaten and can take necessary steps to prevent it from happening again.
There has been lots of times that I have been more sick then normal (like now) but I had to come to work. I am so carefully when I am cooking to make sure that nothing cross contaminated. It never crossed my mind that it could be from him eating something and then giving me a kiss.
Thank you for sharing this….Changes at home are going to happen can’t handle being at work and feeling like this.
Mrs. Dude constantly gives me the cheek when I go to kiss her at home. I’m hoping it’s because of the gluten 🙂
The barbaric yawp is from dead poets society
It sounds to me that you are already doing the #1 thing to help which is to be supportive and to put the blame on the disease–not the person. Know that anytime a loved one has a disease it affects everyone.
So many times we look okay on the outside and no one can see the bone-weary tiredness, the aching joints, the fuzzy brain, and/or the war going on inside our bodies. We go to work when we don’t feel well because we have to. Our sick leave is reserved for times when we simply can’t function at all or for the multitude of doctor visits that are sure to arise from other complications caused by the disease. Our “tired” when we’re glutened is not the same “tired” that you feel. There should really be a new word invented for the “gluten tired” that makes it a Herculean task just to walk through the house..
Don’t feel offended if she seems fine with people outside the home and then sick when she returns home. We often smile and chat with people because we feel we have to. Sometimes our jobs depend on it. Sometimes we have social occasions that we must attend and don’t want to be the guest that dampens the entire occasion. (i.e. weddings, business dinners, family holiday celebrations). When we come home we are spent physically and emotionally. It takes a toll on everyone, but especially loved ones who get the short end of the physical and emotional stick. In other words, know that we become good at smiling through the pain for others because we have to, but appreciate NOT having to do that with the ones we love. She thanks you for allowing her to feel safe enough to drop the act when she is with you.Sadly, many of us have loved ones that take offense and feel they are being treated worse than strangers.
Don’t take offense if she doesn’t want to be touched at all. Know that sometimes a gentle hug or caress can hurt.. My husband loves to put his arm around my waist, but if I’ve been “glutened” I will flinch and draw away as a reflex. What he can’t see is that I feel like my abdomen is an overflated balloon. I have even looked in the mirror sometimes thinking I must look six months pregnant and am surprised to see that I look no different. The best thing is for the two of you to open the communication lines. We actually joke about what my husband calls the “Don’t touch the tummy!” moments.
Know that advance plans are scary for us because we never know from day-to-day how we’re are going to feel. That event scheduled two months from now can’t be fully appreciated until the day before. I’ve actually been a paranoid basket case just before an event and have eaten next to nothing. We simply can’t get as excited at events on the calendar as others. It isn’t because we aren’t excited to do things with you. We are afraid that we’re going to feel horrible on that date and don’t want to disappoint you..
Sometimes things that are exciting for most people like cruises, resorts, and multiple destinations are scary for us. Buzzwords like “all-inclusive” are particularly horrifying because we’re locked in to where and what we eat . Part of the fun for any trip is sharing meals. Unfortunately, for us that becomes the biggest stress and fear. Throw in a trip where we don’t speak their language and the fear is magnified.
Be willing to be flexible. One crumb can make that dream vacation or even dinner and a movie become months of torture. One vacation in San Diego I ate dinner at one location I knew to be safe and then we went to another for my husband to eat at his favorite Mexican eatery. We still had a great time..
Be her champion. My husband is now a pro at questioning restaurant staff and talking to managers when I feel like I just can’t talk about gluten or cross-contamination another moment. He is my second set of eyes for little things like spoons being double-dipped from gluten items into the gluten-free ones. He educates others. He doesn’t ask what he can do to help because he knows I hate being an invalid. Instead he says, “Let me do that for you.”. (Those six little words say more than all the Hallmark cards ever written.;) He takes over when I can’t function. Last February I came out of surgery and the nurse tried to give me a cracker and ginger ale in recovery. He was on it like a dog with a bone and practically slapped the cracker out of her hand. This is the man I hope I never have to live one single day without.
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Wow…just a phenomenal comment. Seriously…you totally nailed celiac disease in 8 paragraphs. It almost deserves a post of its own so more people will read it.
One of the best comments I have ever read. I wish you would make a blog post on this blog one day. It would be so helpful to just print out your comment even and share it so people will understand!
You have just written down exactly how I have felt everyday for the last 7 years but have constantly struggled to explain to people! I gave you a round of applause after reading that! (And your husband sounds like a true knight in shining armour)
Fantastic advise and a fantastic post Miss D!
Great post. . .
I think “lethargic” describes the celiac tired. . . as when I have my colitis flares too (Hubby witnessed those about five years ago and I don’t think he ever wants to see that again).
Hubby tells me that I am his hero –the person he looks up to when he’s sick and not feeling well. He knows how hard it is to function, put on a perky face out in public or with extended family and then just want to curl up in a ball and die or hibernate. When he is sick, he just wants to sit on the couch and do nothing. . . when women are sick, we still make dinner, clean, do the laundry, grocery shop, etc.
Have you ever seen the cartoon (it’s been remade often) of the man coming home and asking his wife what she does every day and then one day he comes home and the house is a pit and dinner’s not made. . . “honey, you know when you ask me what I do everyday. Today I didn’t do any of it”.
I think the best thing you can do when your girlfriend is glutenized, is ask if she wants anything made–usually I just want soup and to be left alone, or be allowed to cuddle.
You’re comment brought tears to my eyes.
2 mins before reading it I texted my friend of 8 years who kissed me at a party last Saturday, and I kissed him back. We’ve spent the week snuggling, watching movies together, taking things slowly, but kissing.
I was diagnosed with Celiac almost one year ago (Wed, Feb 15th 2012, 7:05 pm). I’ve been single since, broke up with the bf at the time of diagnosis to focus on me (he didn’t understand the disease and didn’t seem to be taking any interest to learn).
I felt better all this year, getting better every day… Till this week.
Feeling like I was dragging bricks behind me, headaches came back, brain fog, arthritis pain (arthritis doesn’t have an age limit… I’m 31 and have had it since 14). Today I woke up unable to go to work, dry heaving, feeling like I had been hit by a Mack truck.
I hadn’t missed work for gluten in so long…. I’ve been so religioulsy gluten-free…. I couldn’t figure out what had happened. Then it hit me, like the ton of bricks I was carrying behind me all week… It was his kisses.
I researched and found that it is a common occurance to be cc’d by kisses. They are The Kiss of Death and I had to tell him before we take this any further. So, he txted me and asked me how I was feeling, and just 2 mins before reading Miss D’s post (which literally brought me to tears) I told him.
Wish me luck…. I’m waiting for a response.
Ok, he responded!
Him: “I’ve found someone”
Me: “?”
Him: “That would be you. If I have to change some things then I can do that”
I thought that was it…. Thought that was the end.
Me: “my heart just dropped. Wasn’t expecting that from my heart but it did. You’re amazing. Ouff ya got me all teared up lol jessus”
Him: “You also. I’m sorry I don’t want to let go and im not going to. I’ve found someone, you.”
Me: “Lemme pull my heart from my stomach… You’re willing to make some changes for me.. Wow. Wow. Ahhh. You are something else.”
Him: “Yup you are just going to have to give me the details of what I can and cannot have because of this”
He is amazing. Wow.
Thanks for being here you guys… Made me feel not so alone. 🙂
Xoxox
This nails it perfectly. Thank you!
Cooking by my husband is the greatest gift. We take turns with dinner. Sometimes I want to just not cook or think about food. I have to make my lunch so I’m frequently making soups or salads. Also, the baking – if I want to eat it then I have to make it. I try to mix up the cuisine and have ethnic variety occasionally. It is exhausting at times! Sometimes I like to eat food cooked by someone else.
New foods is what I miss the most Donna. And I don’t expect Mrs. Dude to whip up something new all the time. And lord knows I don’t excel in the kitchen. But every once in awhile, I’ll taste something new and my taste buds thank me for days.
To Miss Dee Meanor:
Your email brought tears to my eyes. I want to hug your husband. He’s a keeper! Your description of “the life of a celiac” was so accurate in every detail…and you’re quite a good writer. Thanks for sharing.
The best thing to do is to take care of anything that needs to be taken care of that day so she can rest. My husband is so good at that. I really appreciate when he takes the kids, cleans up the kitchen, or whatever so that I can just rest.
As Miss Dee Meanor said above, our tired is different than other people’s tired. Your husband is a good man.
When my husband wears his I hate gluten t-shirt (which we made!) it makes me feel better to know he understands and supports me 100%! 😀
I’ve often worried now that I have Celiac Disease that I will be single the rest of my life. I mean, I know that’s a bad attitude to have, but I worry just the same. I’ve not had good luck with dating in the past and now that I have this extra complication, I’m concerned that no one will want to date me. I’m 34 years old by the way. I’ve tried online dating many times, but have not had luck. Other than online dating, it’s really hard to meet people where I live. I wish there was a dating site for Celiacs and/or people with allergies. I know they exist but I haven’t found anyone near my area at all.
Rachel, you will find someone. And when it’s the right someone, they will get it. The day I was diagnosed was the hardest day I have ever faced, and I can’t even imagine how scary it was for my boyfriend to hear that his girlfriend had some disease he had never heard of and had no idea what it would do to her. But, he was nothing but supportive, he just held me while I cried for an hour straight. Nearly two years later, he’s still there for me every time I need to break down and cry. If someone is judging you on your disease, then I’d say you dodged a bullet, as no one deserves to have that kind of negativity in their life. celiac disease can be really scary and confusing when its new to someone, but that’s where communication and understanding comes in. There are tons of people out there who will not see you as just a girl with celiac disease. You are so much more than celiac disease, and I’m sure tons of people will see that in you. Be strong, and be proud of who you are. All the best.
Back when I was dating, I had several first dates that started with the guy saying “So I thought we’d go to ____ for dinner” and me vetoing it because I couldn’t eat anything there. I lived in Austin, so we could generally find somewhere else that met both our requirements. It was never a major issue. Now, the guy who couldn’t understand that opening up boxes and putting stuff away completely overwhelmed me and thought I should be cooking dinner every day and cleaning house since I wasn’t working (I was a full-time student taking physics, chem, and biology all at the same time)? Yeah, that was an issue.
Something that also helped was starting out with activities that weren’t focused around food. I was in the SCA (medieval recreation), I hung around a few other groups in Austin, and my friends were all cool with me eating oddly. By the time we started figuring out dinner, anybody who was interested had been around me long enough to start to figure out the type of person I was and the type of diet I had to eat wasn’t a major focus. Some of the more broke boyfriends I had would even make sure they had stuff at their apartment they could cook for me (and run all the seasonings by me).
Having celiac will not be a deal-breaker if you find the right type of guy. Having a permanent pity party for yourself can be. LIVE YOUR LIFE. Have fun. Do what makes you happy.
I’m jealous. I’m single and I have to do this alone. I constantly have to re-educate everyone around me regarding what I can and can’t eat and that stomach is distress is, for me, quite normal. I suggest that he ask her what she needs when she’s feeling icky and then start a journal to keep track of the disease and to use as a reference when he’s not sure what to do for her or what or where she can eat.
YAWWWWP!!!!! Dead Poet’s Society! LOVE that movie. 😀
And we’ve got a winner….(one of my favorites too).
I know this is lame…but having a sense of humor really does it for me. When I was in labor actually, I had my sig other stockpile material in his brain to use…so my entire 3.5hrs of labor (hold your applause haha), he was cracking jokes for me.
Is that sick? lol
Anyway, here’s a thought: have you ASKED her what would make her feel better? Because I bet no one would have guessed that joking with me through the door of the bathroom while I’m losing it from both ends due to some cross-contamination would make ME feel better, but it does :p
Backrubs rock too if you don’t have the fortitude for bathroom noises haha
Rachael s I’m in the same vote but as the next comment said u will find someone like Oneday I will who will understand
It sounds like you’re already a great guy by wanting to learn more. My best advice is to simply be kind. Unless you’ve walked in our shoes, you simply can’t understand the paranoia that comes from eating out, the anxiety associated with going to social events, the guilt of not being able to do things that you used to do, etc. So if she’s acting a little off, it’s probably because she’s experiencing something but doesn’t want to burden you. Recognize that and be extra kind on those days. This is a life-changing disease that effects every facet of our lives. But mostly, we just want to be normal again. Care for her….whatever that looks like to you….and make her feel normal. Don’t go out of your way too much, that’s just gonna make her feel like she has a sickness. On my worse days, I love when we head to bed, my hubby pops in a movie, and let’s me fall asleep, regardless of the time of day. When I’m asleep, he goes about his day. I don’t feel guilty for keeping him from what he wants to do and he gets to be the sensitive dude. A word of advice though…don’t ever say “you’re always sick”….they might be your last 🙂
My boyfriend is completely insensitive to my having Celiac Disease and Ulcerative Colitis.
I was diagnosed in Oct 2011. We were already dating at that point but weren’t official until March of the next year. So he already knew what he was getting into. Somewhat, anyway.
But he teases me with foods I can’t have, tells me I’m lazy when I don’t feel like doing anything, we argue about where to eat..
I hate it. but I love him.
This damn disease has affected my life in so many ways, I hate to think I’m going to lose him over it also, but it hurts.
Love your blog, btw.
Super informative and, I swear, you can read my mind or something.
As much as I hate that anyone else has to deal with let this, it’s nice to know I’m not alone.
If you lose him over this, you’re not losing him over celiac. You’re losing him over his basic disregard for your well-being. If he was a diabetic, would you think it was alright to tease him with Cokes and candy, call him lazy if his blood sugar was out of whack, and insist on eating places where you know he has issues processing the food? What he’s doing to you is the equivalent.
Oh my word! I just found this blog, this post, and these comments (sorry so late to the party!). As a 22 year old with Celiac and Ulcerative Colitis, and one that’s been sick with both things since age 16 — reading this blog and entire website is wonderful. The posts have made me laugh AND cry. I’m quite alone in my particular battle with these things because I am so young/not really anyone in my life who can relate. Thank you for your gift of writing!
Stephanie, welcome!!! I hadn’t checked in here in a while, but your comment spoke to me. I was diagnosed with Celiac at age 38 but will have yet another colonoscopy because my gastro thinks I may also have colitis. If I am diagnosed with it (and it seems likely), I’d love to pick your brain as to how you handle it. In the meantime, stick around this site for support, especially emotional support.
I would be happy to help in any way 🙂
I’m definitely sticking around this blog- I can’t believe I haven’t found it before! 🙂
When I am having a gluten attack I usually just want someone around. It depends on what stage of the symptoms I am in. Initially my entire body is aching and I’m nauseated and the last thing I want is for someone to touch me. I just want water refills and grapefruit juice. One time my boyfriend just watched movies with me and juiced 2 bags worth of grapefruits to help flush my system. Just the simple fact that he wanted to help made me feel so much better..
When day 2 or 3 hits and I am frustrated, emotional, moody and depressed that is when I need a hug. I need a reminder that its the gluten making me feel this way and that it is going to pass soon. If I am angry I need someone to say they understand and support me. If I am snappy I need people to know that it is not intentional and I dont mean it. I do my very best to avoid these behaviors when I am feeling awful but the ones I love feel the gluten wrath at times.
Basically, we are all different and we all have different needs. I like someone to ask me if there is anything they can do to make it better and if i say no just to be there for me. it eventually passes and it sucks but knowing someone is going to support you through it makes a world of difference.
Tears of joy after finding this site through your book. I started reading your book and when I realized there was a whole community to ask questions to…im balling again, been crying so much lately. Please, I have questions!
Hi, I’m a newbie recently diagnosed with celiac. I’m 28, and have been in and out of doctors offices trying to find out what is wrong with me for four years when my symptoms started to become overt and serious. This last April I finally found a doctor who listened to what I had to say, what I was struggling with; who heard all my seemingly separate issues and then connected them into a single diagnosis: celiac. Relief was first–finally an answer! Then I was like this wil be easy, there are so many gluten free options and menues…then after a couple flare ups I was hurting and frustration set in, quickly followed by fear.
I am still paranoid and fearful and frustrated. It’s only been 3months and I’m so overwhelmed–how did I ever think this was going to be easy?! I’m getting over my latest flare up which resulted in a severe summer cold. I was ridiculed over the phone when I called the advice nurse when I answered yes, I do have an auto-immune disorder, it’s called celiacs. She informed me “no that’s just a GI thing”. Then when I asked the pharm tech if my cold medicines were gluten free, she laughed openly. This was ontop of being sick and having all my usual horrid symptoms from gluten.
My husband says he’s worries I’m going to become a hypochondriac because I told him he should rinse off his mouth with water at least before he tires to kiss me and to please not drink out of my straw after dinner. He told me the biology doesn’t add up, that kissing me an hour after dinner the enzymes have all broken down and it’s safe.
After the horrible week of disbelief, trivialization, and just feeling crappy–I took his response hurtfully and burst into tears. My husband is a great guy, but we are so new to this and I don’t know what’s safe and what’s not, I’m still crying randomly when I’m in the grocery line. I even lost it at my salon when I saw an issue of Portland’s monthly mag about must have summer craft beers.
Because I loved to cook, I think my spices must be contaminated from past use, but I’m not sure because I have never dipped or measured (I eyeball everything) so why would they be? I googled it and they say spices are fine, but I’ve been afraid to use them, and also dread the money to replace them.
Pleas help: are kisses REALLY contaminated, are spices that don’t say gluten free ok, where do I find “scientific” support for my left brain partner?