Friends can come and go and this blog has covered many unfortunate stories of friends bailing when you have to go gluten free.
Co-workers? They’re too busy trying to climb the corporate ladder to worry about the nuances of celiac disease.
But family? Man…they gotta be there for you. If you can’t count on family…well, then there is no hope in this world.
Which leads us to today’s Celiac Rant of the Day.
I was diagnosed with Celiac Disease four years ago, a month before I turned 38. It was a huge adjustment to throw out all of my gluten-laden food and re-learn how to eat again. I never knew just how much gluten I was consuming until I couldn’t have it anymore, because for the first time in my life, my stomach no longer hurts. I didn’t know that it wasn’t supposed to hurt. The absence of pain is astounding. I no longer have to keep a mini bottle of air freshener for those unavoidable trips to other people’s bathrooms.
My friends and all of the co-workers I’ve had since then have made an effort to educate themselves about my disease. They’ve started to see their groceries according to whether or not they’re gluten-free, and I love that about them. If they find an article about eating gluten free or about Celiac, they clip it or forward it to me. They no longer give me dirty looks when I make my way out of the break room when they’re cutting someone’s birthday cake. They lobby on my behalf when there’s a work luncheon, and the parents at the school where I teach know to include gluten free options for the annual teacher appreciation lunch.
Know who still has no idea what I can and can’t eat? My own family.
I never push anyone to accommodate my dietary restrictions because I find that it turns into an attack that begins with, “Well, what CAN you eat?” and “Why don’t you pick the restaurant, then?” and, my personal favorite, “Why don’t you have a salad?”
I’m staying with my mom while I recover from surgery and unless I accompany her to the grocery store or give her a very specific list, she never comes home with food that is safe for me. It never occurs to her to look at the ingredients, or just to skip to the end where it will read, “Contains eggs, dairy, WHEAT”. By accident, she bought gluten-free taquitos, but it was, indeed, an accident. I realize that she’s in her 70’s and it’s asking a lot for her to learn about this, but I’m her daughter!
I’ve read up on emphysema, COPD, alternative treatments for arthritis…and she still doesn’t understand that those ice cream Drumsticks are poison for me and if she buys them, I’m not going to eat them to make her happy.
When my brother cooks, he tends to use glazes and marinades that aren’t safe for me. I’ve told him over and over again that it’s a popular location for hidden gluten, but he still doesn’t check. Thanksgiving is a nightmare unless I stay in the kitchen and cook as much as possible before someone adds that special touch of gluten where there would normally be none. Dessert is still brownies and pie. If I want something I can eat, I have to make it myself.
I have a birthday coming up. I would love a birthday cake, but as the last four birthdays have shown me, if I want one I better make it myself.
I’m going to end this rant on a positive note. GF grilled cheese sandwiches are the BEST. The absolute BEST.
(I appreciate your willingness to keep this anonymous. Not that any of the aforementioned family members would read a website about eating gluten free, but…)
Need to Vent?
I hate celiac. You hate celiac. We all hate celiac.
With all that pent up anger, people need a place to vent.
Well…I invite you to lie on the Dudeโs couch (figuratively speaking) and spew away.
Thereโs just one rule: Once youโre done venting, you need to move forward and put the negative vibes on the back burner. Positive energy brings positive results.
Donโt you feel better already??
I’m so sorry to hear this. It sucks when people close to you just don’t seem to want to bother.
I hope you will have a happy birthday, even though you’ll be baking your own cake. (I take all my own food almost everywhere these days – and have almost stopped feeling embarrassed by doing so.)
Best of everything,
E
I TRULY feel for this writer! It sucks when the friends try harder than family! Its just not right!
Today is my birthday. I’ve never even been a big fan of cake before, but somehow this year – on my first post-diagnosis birthday – I’m secretly hoping that someone will find or make me a GF (and corn-free) cake. I have a GF bakery near me that once told me that they could use corn free baking powder upon request for me. I’ve left their business card around the house a few times.
The saddest thing right now? Its 7 am and I already have restaurant anxiety for tonight. I have multiple food allergies and have only successfully* eaten at a few restaurants in the last 8 months. I have each of my parents taking me out tonight and tomorrow night and I picked those 2 places. Wish me luck!
*For the record, by ‘successfully’ I mean that I was listened to, heard, and accommodated more so than just that I didn’t get sick!
Thanks for the sympathy, Becky! I hope your birthday was wonderful today. For future reference, there’s a blog called Gluten Free Betty and she has a WONDERFUL recipe for red velvet cake. The only change I would make to the recipe is adding 4 more heaping tablespoons of cocoa than the recipe calls for.
I so hear myself in this letter … even in the time diagnosed – also the last 4 years … and it is my family – that I have been having a bit of a struggle with, to the point where we don’t connect much anymore ~ family meals (which were an important part of our family social life) are a thing of the past. Though I did tell my mother and Aunt recently that I miss my family and we need to figure out how to work things ~ I guess it will just mean that I will have to bring a separate meal for myself and my guy … but unfortunately the damage has been done and I can’t see this happening anytime soon.
It is a different kind of hurt when it is your own family that does not understand (especially when my boyfriend’s family bends over backwards to try and get things right – we are still on a learning curve but I think having Celiac Disease is one big learning curve – but at least they want me there and give the effort). I can’t begin to explain the hurt when it comes to your own mother and aunt who just don’t get it and can’t understand it is so much more than food ~ and what they have done by making me feel like the “outsider” by having a disease I can’t control, that I did not ask for, and that I did not do anything to get.
I so hear people when they talk about the disappointment and hurt ~ somedays you don’t know where to put it, how to deal with it … so most days I just don’t. I am thankful in my immediate family ~ the one I live with my boyfriend and Son – that they get it. I guess that makes it one step up from reading about people who live with the family members that don’t get it and don’t care.
Day by day … all we can do is try and educate them in small ways and hope that eventually they learn? they care? If not ~ then just surround ourselves with those that do … ๐
My family was like this for a very long time. They’re still a little like that. I’m sure you’ve impressed upon them how serious this is. And I’m sure they’re more than happy to point out how difficult you are. It just sucks all around. So sorry :/
It’s not so much that they think I’m difficult, but they don’t understand the seriousness of this disease. My sister surprised me today. I’m heading out of state to attend her wedding and she told me that her fiance will be grilling on Wednesday and they wanted to know what brand of gluten-free buns I would prefer. My sister also reminded me that the local grocery store has a GF aisle and we can go shopping when I arrive.
That’s progress!!!
That IS progress! yaaay! happy for you Doro!
I can totally relate. Especially with my big family, don’t expect them to go out of their way for one person during a holiday event, BBQ’s and etc. I’m sorry you have to go through this and I know it’s certainly tough. I thought the exact same thing that my family would be there for me when I was diagnosed. Boy, was I way off and had to adopt other people into my life who understood my disease including other fellow celiacs. You are not alone. Keep your head up!
Gah, that’s tough. My daughter has allergies and although my extended family do try really hard, occasionally she does get fobbed off with a packet of biscuits while the others tuck into home made cake. The things that makes me gnash my teeth a little though is that one family member tries really hard and makes egg free cakes and then bemoans the fact that they don’t turn out well. Umm, but why doesn’t she just go to my blog and use one of my (tried and tested) recipes??!! I try to say that in a kind and generous way to her, but I’m afraid it comes out very tight-lipped and snarky… ๐ Good luck with educating your family!
My family was like this for almost the first year. It was painful. I didn’t think they cared, and I let them know that was how I felt. It took a little while but to my surprise, they actually started educating themselves about it. They go out of their way now to accommodate me. It’s still stressful going out, but they always make sure there is at least a GF menu. My husband even grills the waiter to make sure I won’t accidentally get glutened. I think once they learned how serious it is they came around.
I am sending you a giant cyber space ((hug)) and I wish with all of my heart that someone in your family takes the time to learn and finally get it right.
If you lived near me, I’d make you a cake. Upstate NY perhaps?
(worth a shot to ask….) ๐
Happy, HEALTHY Birthday!!!!!….. and I wish you gobs of joyful moments in the days to come.
The Irish toast with SLAINTE!! (pronouned Slawn-cha) and it means:
To your health.
So, fellow traveler….Slainte and many blessings,
IH
You’re so sweet! ‘Fraid I’m on the opposite coast (Southern California). But I am half Irish, so the toast was perfect.
My hardest battle was convincing my younger daughter not to give my granddaughter snacks that would gluten me when I was with them. It is impossible to not to hold and kiss your grandchild, and when she has Cheerio drool on her face, hands, and every surface and teething toy in between it is like handing me a grenade with the pin pulled out. It all came to a head in what I now refer to as “The Cheeto Incident of 2011”. I was sick for two weeks after she stuck her yellow fingers in my mouth.
Her husband has a peanut allergy and she would never feed the children peanuts and then hand either of them to her husband so I knew she gets why drool is to be taken seriously. I think the general feeling is that if it doesn’t require an epipen, then it isn’t that bad. Thankfully, she is taking is serious now, but I did have to have to get pretty pissy about it. before I was heard..
Miss Dee, I am having the exact same issue with my step-grandson as well!! However, instead of cheetos as the offending agent… I am being attacked by little cheesy goldfish!! Ahhh!! There was a gluten apocalypse on my coffee table yesterday. It’s crazy how anyone else would just walk by with no care in the world….but, instead my eyes pop out of my head and I’m afraid to go near it. All because of some little innocent (or evil, depending on how you look at it!) goldfish.
Ohhh..I have been attacked by the goldfish, too!
If she glutens you, you “gluten” her bathroom. That will get the point across. (and may I offer an apology to any friends whose bathrooms never recovered from Doro Didn’t Know She Had Celiac?)
I am happy for all of you who have supportive families, but I know exactly how this person feels. I grew up with my brother having a ton of food allergies and my mom continues to accommodate every single one of them, but apparently – my gluten-free diet was just too much to handle. I had to bring my own food to family gatherings for many, many years. Yesterday, I had to head over to my parents house to assist with a computer issue – but before I left, I knew I had to stock up with gluten-free snacks, because they don’t keep anything in the house that I can eat.
Just last year, my mom even bought me a regular birthday cake for my birthday – with which I was required to take the obligatory birthday photo and blow out the candles…..and then proceed to watch everyone else in my family eat my birthday cake – but me. This year will be my 10th birthday gluten-free. There is now a local dedicated gluten-free bakery that will make a gluten-free birthday cake….but, it’s on the other side of town from my family. I wonder if someone will make a special trip?! I kinda doubt it, but we’ll see.
I’m so angry right now, I could spit.
WTF?…really, getting you a gluten-filled birthday cake….that everyone else can eat but not you.?
That is about as callous, cruel and absurd as anything I have ever heard.
the question is…..WHY do you put up with that, hon??
ha ha…..go ahead and spit – preferably on the gluten-filled cake! ๐
Why do I put up with it? Because they’re my parents. Celiac already took gluten from me… I’m not going to let it take my family as well. Do I wish they would go out of their way to make gluten-free meals safe for me to eat? Yes. Do I wish they would think, “Hmmm, maybe she doesn’t want to see everyone eating her cake when she can’t?” Yes. Does it piss me off that this doesn’t even cross their mind? Yes. But, I’m not going to disown them because they don’t. It’s just a family dynamic I have learned to live with.
Luckily though, I have a husband who “gets it” 100% and always goes out of his way to make sure I have extremely tasty gluten-free food to eat. So, it’s not a total loss. I do have someone in my life that is thinking of me before themselves. ๐
whoa…..I am not suggesting you disown your parents!
Did I say that? Nope!
I asked why do you put up with that?—as in tell her not to do it anymore.
Have you “learned to live with it”? —yes, perhaps, so —but obviously, it is quite painful for you and I do not blame you for feeling bad about it.
If my mother made me stand there and blow out a gluten cake for my birthday, and then serve it to everyone and I GOT NOTHING?? well, I would have something to say about it.
How, exactly…. is it MY birthday cake if I cannot eat it?
Have you said anything about how this hurts your feelings year after year?
๐
I am glad your hubs is supportive. I have one right here, too. We are lucky.
Again, unique family dynamics at play here…. and this is a Celiac blog – not a dysfunctional family blog – but, let’s just say my mom gets extremely sensitive and defensive if you say anything about what she does. I have learned to pick my battles. This just wasn’t one of them.
Last year was the first year she bought a cake for me….. usually there is NO cake – and everyone just eats ice cream – so it’s not like the birthday cake fiasco happens every year. My birthday comes up again in just over a month – so, we’ll see what happens. I had planned to ask her prior to my birthday for her NOT to buy another gluten-filled cake. That will probably mean she’ll ask me to bring something I can eat then, but I guess that’s better than nothing.
I was just taking my moment to vent about it…. I appreciate you all having my back on this!! ๐
Honey,
Your MOTHER should have a cake for you every year!! EVERY YEAR!!!
It does not matter if it is gluten free, peanut free, icing free, soy free, or “goddamn yucky icing roses that are so gross” free!
You are defending your mother valiantly—-and that is admirable, but the POINT is …….you wrote about this and expected a response and we gave it.
And you are correct…this is celiac rant blog!!….and this PARTICULAR TOPIC involves dysfunctional families!!!!…yes?…. SEE THE TOPIC??…and that is why you felt compelled to tell us your story. So why are you upset that we are answering you?? I do not get it.
You told us, we answered, but you are making excuses for your Mom.
YOU DESERVE BETTER. PERIOD.
I didn’t get upset with you for responding, in fact, I thanked you for your support. I appreciate that everyone can empathize how this made me feel. However, I suppose I felt the need to defend myself against ‘why’ I didn’t say anything. You are absolutely right, the title of this particular blog is “My Family Sucks”. So…there it is – but sometimes people just don’t want to admit it. As the victim of abusive relationships in the past, I have been known to just “let things go” and not stand up for myself. You’re right, I was probably making excuses for myself and excuses for my mom. I know that this is something that I need to work on. Perhaps I was just looking for a little empathy, not necessarily a life lesson. But, I got it loud and clear. Again, I thank you for coming to my defense against the gluten & icing rose filled cake I could not eat.
I just could “feel” your pain through your words, hon.
I could picture the whole thing. And my heart hurt for you.
I admit it—I sometimes go overboard with my protective Mama thing and I am sorry if I came across too “vocal”. I just hate it when good people are left feeling isolated or left out because of any reason–especially celiacs —–when all it would take is some loving effort on another’s part to get a GF cake.
( I left a long marriage that became toxic myself and so, I DO get it. I covered up for him and made excuses for him and I enabled him and then one day, I said “I’m done”.)
No need to make excuses to any of us for your parents’ behavior, sweetie –there are no excuses for it. They made a fellow celiac feel bad and guess what we are going to do? That’s right, defend YOU loudly. I hope you have a wonderful NEXT birthday and you could always make your own YUMMY GF cake, bring it and insist they eat that one.
I have a killer flourless chocolate cake with ganache that will knock your socks off…happy to share, if you wish!!
๐
Kudos to both of you for realizing the intention of the other. Very…dare I say…mature. Or is that pushing it ๐
My intentions are always pure.! ๐
hey, dude…….do not EVER call me “mature” or I will come over there and kick yer ass.
๐
love, IH
Kristin, when is your birthday? Mine is coming up in just over a month as well (Sept 8).
Gluten Free Betty…Red Velvet Cake…4 extra tablespoons of cocoa.
Print out the recipe and give it to your mom. Tell her that you know it’s a hassle trying to figure out what to do for you and you’re making it easier on her. ๐
Awesome, Doro – my birthday is September 9th! ๐ I’ll look into the Gluten Free Betty Red Velvet Cake recipe. Thanks!
Kristin, that is harsh! I think in the birthday photo they would see an exptended middle finger somewhere on display..
(snort) hehe me too, Dee, me too.
Or my foot right through it.
LOL – Miss Dee & Irish…. believe me those thoughts were in my head – they just weren’t caught on camera! There is one picture they caught of right before the lighting of the candles that I’m looking entirely pissed off. LOL. My husband noticed, but no one else did.
Oh…and Irish – as she takes away the cake to cut it up for everyone else…. my mom says … “Oh, and sweetie – I have vanilla ice cream for you.” Ooooh. Yum.
sorry, but I think this is WRONG.
and so do YOU!!! and your husband does too!!
Time to speak up. OR it will go on for the rest of your life.
YOU DESERVE BETTER.
My mom would have offered me “fruit” Kristen LMAO … I so hear you on all of this … ah my family just ignores my birthday all together now and we don’t get together anymore.
Like you said – Thank goodness for understanding spouses/mates …
๐
And yes GD I agree with you their conversation was awesome … and yes quite mature “even for an over protective mama of IH” ๐
All good … and Kristen I hear you about family dynamics … it’s all good to say “SAY SOMETHING” and a whole other matter to “Say something” to some people … and well our mothers are who they are ~ and often it is just us learning to find a good approach …. still struggling with what mine could be ha ha.
We need to have some sort of event to bring the plight of the Birthday Cake-Less Celiac patient to light. This is just WRONG. I can’t believe you had to suffer with a cake you couldn’t eat. Ugh!!!!
My snarky side tells me to get your mom a dress that would be too small, and insist that she pose with it before you wear it, but that would just be wrong.
I just got back from my birthday dinner and am happy to report that I had a yummy cake! My husband’s the best!
Just don’t ask what it cost! Yikes! It was worth it though if just this once because it meant a lot to me.
Let’s also not discuss how feverish I feel and how many ladies-room trips I’ve made so far! Oy!
Let’s not worry about what it cost — you’re worth it!!
It is now Day 3 of being at my sister’s house and I have been glutened. It must have happened yesterday during the lunch that my brother-in-law-to-be prepared. I thought I was being careful, but by the end of the day I was feeling…well, all of you know how I was feeling!
I mentioned it to my mom this morning by way of explaining why I wasn’t going to eat breakfast and she gave me The Look. The one that says, without actually saying a word, that I better keep my mouth shut about feeling sick lest I ruin the family reunion and upset the bride. I’ve gotten the same look from her and a few other family members when our planned dinner at a restaurant that has GF options was changed to a restaurant I’d never heard of. The sad thing is that my sister, the bride, wouldn’t feel the least bit inconvenienced if I told her what happened and why I’m staying upstairs near the least occupied bathroom.
I’ve already had to eat a salad, remind everyone several times that no, I can’t have a roll and no, I can’t have a bun on my hamburger. My stomach hurts, my head hurts and I’m tired and I hate having to pretend nothing is wrong. But I will.
Back to the bathroom…why, oh why, doesn’t she keep air freshener in there?
I feel so awful for this reader. So often when I read the rant posts I feel like I have been superbly blessed in my new lifestyle. I recently took a trip to NY to visit friends and they ate gluten free meals when we cooked at home and were extremely kind to me asking questions and making sure it was GF before we added anything to a meal. They even went to the grocery with me and helped me find some new stuff to try.
My parents go out of their way. When I first became lactose intolerance my mom started making things like gravy with water instead of milk and she’ll make dinners and keep out a portion for me at times before finishing the meal for the rest of the family just so I can eat with them.
My niece and nephew are even starting to learn about it and ask me things all the time about what I can have or not. They even remind each other, like “remember, she can’t have bread with that” if I order something and they never complain if we have to eat out where I can eat when I take them out.
My coworkers bring me presents of new GF snack bars or pretzels or chips or whatever and even when we buy bags of ice a coworker got a scooper for it in case anyone were to try and grab some ice with gluten on their hands or something just so I don’t get sick.
One of the things I have really learned is not only how INCREDIBLY lucky I am but also how sad it is that people don’t care about the health of those they love. Plus being gluten free can be a really healthy change for someone. You would think that anyone would support a person eating healthier and more natural. Maybe it’s just me.
I’m sorry for you reader and apologize on behalf of your family! Come to my house and my mom will make you a cake for your birthday!! ๐
That letter hits home for me. I’ve been GF for almost 4 years and I can’t trust my family or in laws at all. None of them care about knowing what Celiac disease is, none of them care that I have it, none of them care what I can and can’t eat, but they sure as hell care when I don’t eat their food and they play the “insulted” card every time. My family AND my husband’s. They’re all a bunch of jackarses. As a result, I refuse to even have a conversation with them about food anymore. I just don’t eat and when they ask why I tell them that they already know why. End of subject.
Sad to hear Laci…but unfortunately not too uncommon.
Well your family knows you better than these virtual strangers. they grew upbwith you. Maybe it’s your entitled attitude that has made them roll their eyes and live their lives how they want to. So none of them are supposed to cook meals the way that they want to or have a traditional thanksgiving dinner because you suddenly have restrictive dietary needs? You coworkers don’t have to live with you in their houses, so they can put up with your “special needs” for a few hours a day. It is up to the person with the special diet to make sure there is food in,the house that they can eat. When I became vegetarian in my teen years it never occurred to me to make my mom buy me special food and then get upset if she bought food with meat in it.
Get a grip. Maybe you’ve pushed them too far throughout your life and they can no longer even hear it.
That’s right Snoozy, because being a vegetarian and a celiac are the exact same thing. Celiacs are a difficult bunch, aren’t we??
I know that some are Family are ignorant and don’t want to understand or are willing to learn, but oh well keep your head up no matter what and If you ever need a chatting buddy Im here js โโ โกโฅ
Listen, I am in my 70’s, newly diagnosed with Crohn’s Disease and newly discovered a moderate/severe allergy to wheat. If I can read labels, anyone can, although I must admit that ding it as intensely as I do now takes some getting used to. I am gluten free because I want to be on the safe side of the street. When I don’t, it aggravates my Crohn’s, another auto-immune disease and have many of the same symptoms. The last of what I shouldn’t eat is disgusting, starting with raw fruits and veggies – and it’s summer!!!!!!! Hang in there. In solidarity.
I am having this exact struggle right now. Noone in my family will even attempt to accommodate my needs (as opposed to a choice to become a vegetarian Snoozy). I end up having to make a ton of my own stuff and then noone else will eat it. They know I made it and that it’s gluten free and won’t touch it. Here’s the kicker though. Last Christmas my sister set up a whole Chanukah corner for my nephew’s wife and my mom made a honey cake for her but not one of them could be bothered to make a gluten free gravy for me. I go through far to much work to eat dinner with people that I don’t like anyway. Staying home this year.
I felt the same way Molly. I am sorry you went through this and still are.
I’m three years post diagnosis, and I really feel for the author and commenters. Thankfully my family is very supportive. My mum has started stocking her pantry with gf supplies for whenever I’m there at mealtimes – although my dad took some time to understand. He’d be making a marinade and I’d say that tomato sauce or soy sauce isn’t gf but he’d reply “it’s only a little bit”. Mum soon got him to understand. Actually, she’s been amazing – educating the extended family of the seriousness of Coeliac Disease and how many things I can no longer consume (far too many people assume it’s just flour). My brother has made gigantic gf gift baskets for me every Christmas; often with many items I have never come across. At my parents’ wedding anniversary on Sunday, my brother made a regular carrot cake, and gf red velvet cupcakes so I didn’t miss out. My friends always check with me if a meal they are planning to make is “safe” for me. One of my friends came over for drinks and stopped at the supermarket for nibbles first, then spent half an hour searching for items that didn’t contain gluten.
I would gladly share my supportive family and friends with each of you, but I’m afraid I come from New Zealand – slightly far to go for birthday cake!
I totally know how you feel. Its been 4 years i’ve been gluten intolerant and every time i go to my brother’s house when they have a birthday party or gathering i’m the one who they have nothing for. So i end up watching everyone eat cake bread and all the food they want while i clean and help and they pretend i dont exist. It hurts but then i tell myself im happy to be alive and there is a simple way for me to be comfortable. Thank God.
I was diagnosed with celiac disease/ dermatitis herpetiforis when I was 20 in 1990. Looking back I am positive that it began in high school when I was 15. My father was in room when I was given diagnosis.
I was given dapsone to heal the skin blisters that appeared regularly Dapsone long term use is extremely dangerous to your health. I felt it.
I lacked any help.
My Father and Mother never did anything to look into it deeper.
Call a specialist, do research, nothing at all. I lived in denial because I was a very immature 20 year old, I believe due to undiagnosed celiac in high school.
The result of not getting helped caused major issues over the years. My family thought my side effects of disease were in my head. They considered me weak, lazy etc.. At holiday dinners and family gatherings my disease was talked about like it was some joke.
I could never follow through with anything I tried to accomplish.
I worked for my family for years, which made situation worse 10 fold.
Through the 90โs and early 2000โs my behavior and health declined drastically. Sick stomach non-stop. Extreme Anger, hostility and several other behavioral issues that led to depression and bipolar disorder.
It led to drug problems.
It led to the inability to succeed, it diminished my quality of life.
Now being glute free for years, I still feel I missed so much and still have lingering effects both physically and mentally.
I as still waiting for an apology from my family.
So sorry Frankie. You deserved better.
Thank you very much. I really do appreciate that.
Have a blessed day.