You want to know what I hate more than celiac disease at times?
Me.
I need to do better.
I need to be better.
I need to be a better husband. I need to be a better father. I need to be a better business owner.
And I need to be a better celiac.
I need to learn to speak up more and take my health 100% into my own hands.
Otherwise, I pay the price like I have this week.
Here’s the story…
Last weekend, we were visiting my wonderful Aunt down in Avalon, NJ.
She wanted to take us out to eat on Saturday night to her favorite restaurant.
Here is what I should have said:
Thank you so much for the invite.
We enjoy your company so much and we would love to go out to eat with you.
But the fact is, unless it’s a restaurant I’m very familiar with, I just don’t enjoy eating out.
I don’t enjoy getting the menu and seeing all of the things I can’t have.
I don’t enjoy asking the server 37 questions about gluten.
I don’t enjoy watching everybody else eat whatever they want.
I don’t enjoy getting my meal and still finding things that I didn’t ask for on the plate and asking more questions.
I don’t enjoy wondering if this meal will do me in for the next 6 months.
I. Simply. Don’t. Enjoy. It.
So let’s cook up a nice meal at home, open up a bottle of wine or two and have a great night.
But because I wasn’t strong enough, because I didn’t want to seem ungrateful, because I didn’t want to ruffle anybody’s feathers, I accepted the invitation.
And it didn’t go well. At all.
I ordered something not on the menu (simple scallops over rice) but Mrs. Dude thought I wasn’t asking enough questions of the server.
I thought I did what I could do.
Of course, Mrs. Dude was right.
But it caused a lot of awkward tension at the table.
And though my meal tasted good, I really couldn’t enjoy it.
What’s the point of going out if you can’t enjoy it??
And now here I am seven long, anguished days later and I feel like hell.
Something in the meal got me and I am totally paying the price.
And I will continue to pay the price for the days/weeks/months ahead.
I need to do better.
I need to be better.
I did a similar thing for my birthday dinner this year at Montana’s. They have a great detailed allergy menu so you can choose what is safe for you, and the ribs and potatoes were incredible, they are safe with your food, but hey, I didn’t think to check for gluten in the corn! My mistake, not theirs and I knew I was in trouble before I was finished my meal. I was kicking myself (figuratively) as I sat at the table trying to hide my pain from my husband’s boss, who so nicely treated us to dinner. It was horrible, and it was a long time healing, as well.
We all screw up, Dude, we’re human and as humans do, we tend to think of others before ourselves. This stupid celiac disease makes us *appear* to be selfish and inconsiderate, but that’s not it, and we need to think of ourselves first, we have *no* choice!
Thanks Lisa. We do indeed need to put ourselves first. It’s just kind of a crappy way to live.
So hope you feel better soon.
It sucks. And everything you said about eating out is how I feel. It used to be such an enjoyment and now rarely is.
I made a similar mistake last weekend. I went to a restaurant that had gotten me very sick last year. I thought I would be smarter in ordering and prepping the staff. Didn’t work. My salad had salmon that I ordered and an extra … A nice strip of ahi tuna. I sent it back. It was wiped off. All this time my family was eating pizza and pasta. I got the supposed second New salad back and I was so hungry I ate it. Stupid me.
So now – my stomach is a mess still a week later, my brain fog is playing havoc on my mind and my muscles feel twitchy and run down.
We are off to run errands today and I am bringing a chicken salad wrap in my cute lunchbox. Don’t care what anyone thinks.
Restaurants so piss me off. My dinner last weekend came with a green pea jello type thing. I asked for plain veggies. It came with balsamic vinegar dripped on top of the scallops. I asked for it plain.
How about they just give us what we asked for? Is it that difficult??
Hi GlutenDude,
I hope you’re feeling better. I know exactly how that feels, not being able to stand up to friends and politely decline.
I study in Canada and I was diagnosed here, so my friends here have been seen the changes in my lifestyle from day 1. So going out with them is always so easy, they always accommodate my need.
Whenever, I go back home – to India- where I spent over 25years of my life, not all my friends get the seriousness of the ‘stringent gluten free diet’. It’s tough, but I think it’s a slow gradual process.
I particularly liked GlutenFreTraveller’s post Why everyone needs a gluten free friend’ (‘http://glutenfreetraveller.com/topics-2/lifestyle/why-everyone-should-have-a-gluten-free-friend/’ )
Take care,
Cheers!
HK
Love the Traveller!
If I were you, I would stay in Canada.
So sorry you’re feeling bad.
It’s exhausting, isn’t it? Explaining to everyone why. Constantly being on guard. I’ve made mistakes, and I know I’ll make them again. We all do.
I hope you feel better soon.
Thanks Pamela. It’s a grind at times for sure.
That’s what you get for being a rich, white person, GD.
I was a bastard to deal with before I was diagnosed, and I’m a bigger bastard when it comes to food after being diagnosed.
I do not eat out, period. Yes, I miss it, but I enjoy feeling well. I used to smoke and got healthier by quitting completely.
Cancer sucks (I am a caregiver for my wife who has Ovarian Cancer), so does Celiac disease. No nicer way to put it.
I carry Nice bars, Betty Lou’s Blueberry bars, a bag of grapes or honeycrisp apple, nuts, and my own ketchup and mustard (hot dogs without the roll in summer). My 3 year old grandson understands that certain things make grandpa sick and that there’s a reason grandma doesn’t have any hair.
I have learned to say NO, to anyone but my wife. I have also learned I don’t need to justify saying NO. Months ago, I stopped trying to explain or to use the phrase Celiac Disease, and it works. Food allergies or allergic reactions are understood by most people as a reason you can’t join in. “If I eat that, I will get sicker than you can believe, and it isn’t pretty.”
Get well soon, GD. When it comes to your disease, “Nice guys finish last”.
All the best
I am standing up and applauding you right now, Rick!!
You speak the truth.
and PS: please tell your wife she is a warrior.
Bless you for being her rock (I know; I have one right here, too)
I wish you both well.
What a fantastic comment Rick. Thank you!
When my daughter Pamela was little she was hypoglycemic, she would eat and if there was sugar even too much natural sugar she would be fine for about half an hour to an hour, then she would almost pass out. When we went to a restaurant and let the staff know about her hypoglycemia and nut allergies, within a few minutes the chef was at out table. He would ask questions to make sure that she would be safe and there was usually no problem. Now that she is diagnosed with Celiac Disease it could not be further from this. You tell the waitress, waiter, that you have celiac disease and they assure you that the meal will be fine and prepared with great care. But, you never know what goes on back there. There are times when Pamela is fine and others that she is very ill for days and weeks. Even when eating at the same place more than once, the first time she was treated like a queen and was fine after the meal. She felt it safe to go again and halfway through the meal had to run to the bathroom and was very sick. Pamela would be the first one to attest that I am fussy and if it is not what I ordered I send it back. (I guess with age we feel we have earned that right). Pam doesn’t like it and gives me the look when I fuss over my meal or hers. Just thought it was interesting to see the different ways people are treated with celiac disease. Hang in there Dude, with Celiac disease you have earned the right to be fussy and get what you ordered and don’t worry about sending it back or as I have said in the past. I can’t eat this and depending on the response have just said forget it. I know i am stubborn.
I just hate being a pain in the ass. It’s just not my nature. I actually get jealous of people who can be total pricks and not care. Not that I want to be a jerk but I’d like to not care so much.
You’re beating yourself up way too hard over this, kiddo. C’mon now! You did nothing wrong. I am sure you are a wonderful husband, father, business partner. You are just feeling crappy and everything seems extra sucky right now. (believe me, I know….)
It is difficult to not be “spontaneous” anymore. As a major foodie, one of my fav things to do was just get in the car and go–to NYC, or down into the Hudson Valley region or wherever the roads took us –as we took photographs and enjoyed various eateries that we stumbled upon. NOT ANY MORE.
Now, everything is a picnic lunch and food in a cooler–all things brought from home.
Do I like it? NOT ONE BIT.
Do I feel bad the hubs has to do this, too? Tremendous guilt 🙁
…. but he assures me eating out is not as important as keeping me safe. He also says I am a better cook/baker than anyone else anyway (he knows all the right lines, doesn’t he? 😉 )
Well, kiddo, you already know that despite my persistent questioning of a server two weeks ago (AND a previous meal there that was perfectly safe!) I got hit hard, too. I can honestly say that I feel your pain and frustration.
But the bottom line is this, in the future, we BOTH may just have to say to relatives what you have so eloquently written here —and protect ourselves from further harm.
I’d rather be assertive and suggest an alternative –like a nice dinner at home—(and risk possibly pissing someone off) rather than suffer the horrendous consequences later.
Someone asked me yesterday: So, Irish, what do you do after a glutening? I take digestive enzymes with my meals for a few weeks, I double dose probiotics to reduce inflammation, sip bone broth for gut repair, drink a lot of water, curse a blue streak and rant at the heavens and cry. (Does it help? A little bit, yeah! but we both know it has to run it’s course. _
Then, I forgive myself for having this stupid disease (because God knows, I did not ask for it) and I move on.
It’s a goofy thing to do but , here, hon : ((hugs)) if you were right in front of me, that’s what I’d do right now.
Be kind to yourself. There’s only one G- dude (and his family is glad they have him).
Your words soothe me Irish…as always.
we are with you all the way and understand.
Hope you will feel better soon
Feel better soon Dude. I know it absolutely sucks to not be able to just go out to eat or order food in and not worry and think about consequences of every morsel that goes into your mouth. I’m very sorry you are once again feeling unwell.
I took my daughter out to the mall this week with her friends. They are 13. She could have a salad from one place and fries from another place. Such an ordeal. But since we NEVER eat out, it was a tremendous treat for her, I, meanwhile, worried, until she woke up feeling fine the next day.
Thanks Tracey.
When you mentioned staying home at your Aunt’s and eating a home cooked meal – that made me nervous. I belong to a club of women where we serve lunch. Some of them insist on making a GF lunch so I can participate. I sweat bullets each time and so far have done fine. One time was a little iffy. Cross contamination is so easy. The questions I am asked as they prepare scare me to death. It’s hard to relax and enjoy food when it may be poison. I may be a fool but I go along with it. A few are not interested in accommodating me and I enjoy eating from my lunch box. So many dilemmas with this disease.
Indeed Donna. I would have cooked my own meal though. Next time…
I needed to read this today. My disease landed me in the hospital a couple of weeks back. The only thing scarier than uninformed restaurant personel is uninformed hospital personel. Like you, I should of been more assertive and less trusting because I was in a ‘ health care facility’. I paid dearly, and was glutened with broth – broth!!
The blistering rash and bloody stools were the proof that was needed before I was taken seriously. Soooo frustrating!
I’m still recovering, and will be for a long time.
Your post was a wake up call – I too need to be better at being more responsible for my health.
Thanks for your honesty.
A hospital?? Believe it or not I’m not surprised.
You are beating yourself up way too much on this one. When my daughters adopted my passion for horses I told them before their first ride “Understand that it is never a question of IF you’re going to fall off, but when and how bad it will be.” Though riding horses is optional, the same advice goes for us when it comes to eating gluten-free. No matter how much we prepare and do everything right, a glutening is still going to eventually happen.
Rice is a restaurant minefield. Even if it arrives at the restaurant without gluten, many chefs add unsafe seaosnings, broths or cross-contaminted items to the mix to enhance the flavor without understanding that have now contaminated the “safe” grain. I’m not saying that is what got you, but I have been amazed at the lack of gluten-free rice even in GIG certified restaurants..
I feel your pain.I understand how many “woulda coulda shoulda’s” you are saying. I send you a virtual hug and gently remind you that beating yourself up serves no purpose other than adding to the misery. I especially understand the feeling of being faced with a decision to miss out on activites that “normal” folks never have to consider because food is involved. A few minutes ago I opted out of a very fun event at our local Harley dealership (bands, barbecue, and a beer truck) because it would mean hours of being in one location without safe food. Since it wasn’t something that was planned in advance, I didn’t have anything to take with me that was “bike friendly” so it was just easier to bow out. I’m feeling pretty sorry for myself right now after watching the neighbors and spousal unit drive off on the bikes without me. (..but not as sorry as I would have felt standing to the side watching everyone chow down on BBQ, hotdogs, hamburgers, and beer while I sipped on bottled water.)
Dealing with this SUCKS (yes, I’m using the forbidden word). Getting sick sucks more. There is nothing upbeat or easy when it comes to being gluten-free. The only advice I can give is to say listen to Mrs. Dude. Wives are always right.;)
I loved everything you said. Thanks for your words of kindness and support. I totally get the whole event thing. Tough call either way.
So sorry you feel horrible. I do understand completely. I must go to a small handful of restaurants (one is our favorite as the CEO has celiac!). My biggest worry is parties. Usually we eat before we go to a party (and I did) but the hostess told me she made something just for me. As she has allergies as well I thought I could trust her. I really do believe she made it correctly but I think her utensils were contaminated. I feel so guilty to ask “did you use wooden spoons or a wooden cutting board or plastic strainers or containers at any point of your preparation?” The past two weeks I have felt horrible as well (one more week to go usually).
Maybe we can learn from these situations. We really do not enjoy the worry. Maybe next time you visit your aunt and I go to a party we should just bring food! You could bring a complete meal so she cannot even suggest dinner out. I could bring a complete selection (no dips as those will get contaminated by another guest!) to the next party!
Are you suggesting we go together;)
I can relate. Unlike you and many other Celiacs, though, I do not get ill if I accidentally consume gluten. However, that doesn’t make it any less of a problem for my health down the road. So I still have to be extremely careful. But sometimes I do feel like I’m being such a bother and that people probably just think I’m a hypochondriac. But I try not to let peer pressure take over my need for good health.
What I find much harder is when someone goes out of their way to prepare “gluten-free” food for me and brings it to a potluck or something. I try to warn people repeatedly not to make me anything because I’m very sensitive to cross-contamination. But they insist and they make something. I almost always refuse to eat it. I feel bad about it but I just can’t afford to cave in to people. Most people mean very well. But they just have no comprehension of how complicated and challenging the GF diet is. They have good intentions but don’t understand cross contamination. There have been times that friends have baked me cookies which they say are GF (although they themselves aren’t on a GF diet). I usually tell them that I will try some later on but that I’m too full or something. Then I usually just end up giving them away to someone who doesn’t have to be GF. It’s often easier to do this than to try to explain what my reservations are which just ends up making both of us feel bad.
In fact, I think we need to write an entry about people who try to cook us GF food (but aren’t on the diet) with the best of intentions and what to do in those situations. Again, I try to warn people not to but they don’t get it and think they’re doing something nice.
Hey. Dude. If I learned anything from last weekend is that I am human. I’m not perfect and I’m going to make mistakes. I was in the same position as you last weekend for the same reasons as you. I was in bed all day Sunday and ran to the bathroom up until Monday. My body is fighting to get back on track with regular bathroom business but it’s struggling. My fatigue is a roller coaster. The b-complex sublingual helps a lot. I’m starting to see a eczema pop back up though but I’m trying to control it the best I can.
When I vented, I beat myself up over it. I hated that I failed to take care of myself. It was my moms birthday. How was I going to tell my mom and dad that I can’t? It was her birthday for goodness sake. The whole thing made a positive though. My parents have seen me sick on and off these all these years but last saturday they realized how powerful gluten can be towards my body. My father was very worried and now asks me to please eat what isnt going to make me sick. My mom got me a new pan! Lol I love them.
My point is that yes we need to advocate for ourselves and ask all the questions. Yes we need to make our needs known to our family members and yes we need to be careful. BUT when it’s something by accident or a situation with no way out we have to forgive ourselves or not eat at all. Please no one think I’m advocating eating gluten!!! Heck no!!!! What I mean is exactly those situations like the ones we both went through and we pick and and ask some questions about the food we think won’t have gluten. Hunger and planning is an endless battle in which sometimes one or both win. And sometimes because we are generally good people we put our own needs behind others.
I know it sounds selfish but in our conditions we must put our health over others when it involves food and gluten.
We all have to work on ourselves as none of us is perfect but change starts with us and it involves forgiving yourself, learning from it and be at peace.
Hope you get better.
Understood and appreciated J!
I agree with everyone – you’re beating yourself up too much over this, Gluten Dude…. we’ve all been there – and sadly we’ll all be there again. Dee’s analogy of riding the horse is perfect. It’s not if… but when and how badly.
I learned a lesson about rice at restaurants early on as well. I ordered a rice/fish dish off of a gluten-free menu at a restaurant – which tasted wonderful, but I woke up feeling awful the next day. My husband called the restaurant to let them know and to ask them – again – how they prepared the dish. Turns out they had coated the pan that they cooked the rice in with Pam. Done. I was sick for several days.
You can never be too careful – but you also gotta live. We all make mistakes – we make gut decisions (no pun intended) based on the information we have and hope for the best.
Hope you’re feeling better soon, GD!! 🙂
Thanks Kristin. Effin food. Ugh.
Is PAM® gluten-free?
PAM® Original, PAM® Butter, and PAM® Olive Oil do not contain any ingredients derived from wheat products. However, PAM® Baking is not gluten-free, as it contains real flour, which is derived from wheat.
Hi
Let me introduce myself. I am the dudes mother-in- law. Really he is like a son to me which I am proud to say. I read his blog today and it makes my heart hurt for him. I saw him yesterday which was almost one week later since his dinner and I could see his pain, but I must tell you he never complains about this pain, but I can tell.
It makes my heart hurt and I want so bad to take the pain away.
I hope he really follows thru with what he says he is going to do, by telling all of us the truth about what is best for him. He deserves from us our love , concern and attention so we can help him with Celiac. PEOPLE PAY ATTENTION!. This is not fun for him and if we want to share a meal with him, listen to what he is saying and do what is best to make life better.
I for one , love and care about him and I will do what I can so he can have an easier and less painful life.
Now, you , dear lady, just made me tear up!!
A MIL who loves her SIL this much? priceless!
What an incredible thing to say – you rock, Dude’s Mom-in-law!! 🙂
You rock. Thank you!
Hey Dude,
I was recently diagnosed and am still beginning to learn the ins and outs of conquering this disease. Unfortunately, tonight, I was confronted with this very situation. Going out to dinner with my grandfather, even though all I got was romaine lettuce and 3 shrimp on top. Some may call it a salad, but for $13.95, I better have been made of gold for all I care. It’s so frustrating and I am at the point where I never want to go to another restaurant again!
I know you say you need to “try harder” and “be better”, but just how does one do that? Do I just need to “grow a pair” and tell people I hate eating out and I can’t because of Celiac? I don’t want to let any one down. And I don’t want to embarrass myself. I mean, I’ve already been laughed at too many times to count. But paying $13.95 for dollar Romaine lettuce in a bowl is an outrage. This can not be my fate.
Also, here is a link to my blog: http://www.glutengallop.wordpress.com
Sincerely,
~Andrea
You sound frustrated…and I don’t blame you. It unfortunately is our fate, but it doesn’t need to be a bad fate. Yes, it can be a real pain in the ass. And yes, you may still feel ill a lot. But there are some positives to our disease as well.
Here is a post I did celebrating celiac disease:
http://glutendude.com/gluten/celebrate-celiac-disease/
Hang in there.
I like your blog 🙂
GD, I’ve been thinking about you since yesterday, and me too. (Your MIL ROCKS, btw), and I will probably repeat the same as everyone else here. Celiac disease is so perplexing b/c we are damned if you do, and damned if ya don’t. Does that make sense? Between family and friends we are yanked in two directions all of the time, and either choice is not a good one for us, unless we just stay home. Another comment from Rachel S about how people will want to make something they think is GF; is another huge issue, and I too turn down those foodies. But my point is, you should not beat yourself up, you did what you thought was the right thing to do….to go out and have a meal in a dynamite place with your family. I think most of us here, keep trying to eat out, I know I do, and it just doesn’t work. I have made up my mind to eat before I go to a rest. or not go at all.
GD, this is a learning process for the rest of our lives, and Miss Dee Meanor is right on: it is not IF but WHEN….
In reference to me: I was going to make plans to travel back to the east coast next summer, my summer’s were spent in Stone Harbor, N.J., was looking to rent a beach house, but I’m not sure I can travel. Also, I’ve never been to Europe, want to go to Italy, but I don’t know if that is feasible either. If I can’t trust a rest. where I have spoken to the chef 3 times and a huge chunk of bread was slapped on top of my shrimp, how can I possibly travel? Will I be stuck in paradise forever? (not complaining about that really), but will my paranoia about getting glutened prevent me from fulfilling some of my dreams? A rhetorical question, but a question I need to ponder. And that is just one more reason why celiac SUCKS!
Julie, my cousin and his wife just spent 2 weeks in Italy and they did not a have a single problem. They GET GF over there.
I propose that we should not be afraid to live or travel. Even when we get hit, we cannot let this thing make us hermits or reclusives. I, personally, lost enough time to this disease and refuse to let it sequester me any longer.
I do not eat food while at anyone’s house (I bring my own food and do not feel the least bit weird about it and no one seems to mind either–they know what this did to me) and I do let anyone cook for me EXCEPT two friends who have asked me a million questions, learned to read labels and borrowed some pans, utensils and disposable cutting boards from me. They did a great job and I was fine. It was such a wonderful experience and we all cried a little bit that I was back to living again. (Lots of champagne flowing…hehe)
I was really nervous about traveling again until I took the plunge. I spent a month in Florida last March, brought my traveling kitchen and Koolatron for cold stuff in the car and I was fine. We rented places with kitchens or microwaves and it worked out well.
Yes, I got hit one time—my own fault for not asking enough questions.
Takes a lot of planning, but yes, we’re going to get hit no matter what we do.
We live in a gluten-filled world and the Earth is one giant “shared facility”.
When WE rule the world, this will all change, of course……..:)
whoopsie…darn fingers & brain post-glutening 🙁
“and I do let anyone cook for me.”…I meant NOT, I do NOT let anyone….except..
Ahhhh, this stupid disease. Once, back in the early 80’s, I stopped at a small BBQ place in south Georgia while on a road trip. I asked about ingredients, as back then gluten was unheard of, and labels did not disclose all the ingredients in something like BBQ sauce. The cook thought I was questioning his ability, and I said “No, I have Celiac Disease” at which point he told me to leave as he would not serve anyone with a disease. I tried to explain but he picked up the phone to call the cops. So I left. I’m still hinky about eating out, even in ‘safe’ places that have GF menus.
And surprise pizza parties at work, friends weddings, Christmas parties, etc. It’s been 38 years since I was diagnosed and some things just never change. I mostly stopped going to work related gatherings where food is served because I don’t like wilted icky salad in lieu of pizza and I get tired of all the explaining.
I’m just a cheery guy, eh?
David,
I have met people just like you who were Dxed long before GF products were on the market. Long before there was any acknowledgment of celiac –or what gluten is—at all. Jay (now in his 50’s) was Dxed as a child and he said his mother gave him dry rice flour matzo –as she did not know what else to do for him.
Back in 2007, a Gluten-free cafe opened up near us and I joked
to my hubs “what’s gluten and why do we need to be free from it?”—
thinking it was some “vegan health food place”.
Hubs said “Gluten is in flour” …I said “yes, okay, right ! but why do we need to be free of it?” He shrugged his shoulders.
Little did I know it was killing me— and I would have a serious decline in my health over the next 3 years—and soon, I would become a regular at this cafe. Crazy, huh?
Gluten is still a mystery to many people.
It was not easy for trailblazers like you!
You have my deepest respect and best wishes.
David,
I am visualizing you in S. Georgia, in the 80’s trying to figure out if you can eat at this joint, asking questions and the guy calling the cops….geez, I just get eye rolls….
But quite frankly if we want to try and laugh about it all, this tale could be in a holiday newsletter, I went to S. Georgia, stopped at a joint to get something to eat, while pondering the menu and whether I could eat there, and asking questions the owner decided I had a contagious disease, unbeknownst to me, he calls the Centers for Disease Control in Atlanta, while detained for several days being offered saltine crackers, i was finally released, . and in my brain fog, I rented a boat, our summer vacation, brought the family and our dog, the boat blew up and good ‘ole Sparky our faithful dog, drowned, trying to save us…we loved that dog.
who can continue the tale?
(not mocking you at all David, just sometimes we have to see the humor in it all, or we won’t survive.)
or perhaps this is just too silly, but silly is my middle name.
mann, sorry that happened to you, David. I really can’t imagine!!
Aloha
Julie
South Georgia has not come very far in the last 30 years. I tried to find GF cereal in a supermarket down there (as we were driving through) and they looked at me as if I had asked if they carried “Bxyzdirprplif”
My biggest fear is that I will be hospitalized (Or be abducted!) and they will give me gluteny foods and I’ll lose what’s left of my mind.
I am thinking of having a chain with a dog tag welded around my neck that says “Do NOT feed me gluten !!!”
Hope you feel better . I got glutened at a restaurant last week not by food but by drink ! I asked for cider and the idiot behind the bar wasn’t paying attention and accidentally filled my glass with beer , as the drink came from the tap and not a bottle I didn’t realise he had given me a beer instead of cider . You can imagine the shock I had when I started drinking it , and if I wasn’t angry enough already he made me extra angry by trying to laugh it off as if it didn’t matter . Try so hard being strict with the diet and than get accidentally glutened from a drink it’s difficult to win with this disease .
Irish Heart, Aloha Julie and GF, Thanks. Poor dog! Yeah, South GA is a bit backwards. After that experience I started packing my own stuff and learned what was safe in grocery stores.
When I was in the hospital being misdiagnosed, I was on a bland diet which included toast with every meal, so the diarrhea never stopped. My doctor did a GI series, colonoscopy, and non stop blood and stool samples. One day he said he wanted to try something else and I followed him to a treatment room. I was instructed to hop onto the exam table, get on my hands and knees, and try to relax by taking deep breaths. I was a really sick 16 year old, so I just did what he said. Then I feel copious amounts of KY being smeared around my rectum, then something quite large and uncomfortable was inserted. It was very painful, as he was trying to extract a stool sample from my colon with some kind of large syringe thing. I was yelling saying it really hurt, and said “Well, for some reason its not working anyway” and pulled it out. So he’s fiddling with the instrument, standing right behind me, and I feel an urgent BM that I can’t stop coming on. I yell “LOOK OUT!” and a stream of Celiac diarrhea shoot out of my butt and onto his chest.
Good times……
Man, what I would have given to have that happen to some of the arrogant doctors I met during the last 12 years as I, too, was misdiagnosed repeatedly…:) Would have perked me right up!
Fantastic!! I am laughing with –and applauding— your 16 year old self.
Yes, the old “toast and tea”–always the go-to food when I was sick all my life….sigh
Good times indeed.
David, you obviously have a great sense of humor and it most likely has kept you as sane as the rest of us.
(sanity being a relative term) 😉
One has to maintain a sense of humor. Some of my closest friends started calling it ‘Silly Ass Disease’, and I had to agree. When I was at my worst before being diagnosed, I made up songs about the extreme amount of diarrhea I had. “My Maria”, as sung by B.W. Stephenson, became “My Diarrhea”.
After I shot the doctor I started laughing, just couldn’t help it. He didn’t think it too funny, though.
(snort) oh ..I do, I think it’s very funny.
ok, now you are showing your age 🙂 …”My Maria”…..haha
holymotherofpearl, I’ll never be able to hear that song without a” visual” now.
I left out and HE (the doctor ) said…..
This post made me so sad for a moment… and then I got very militant and angry. I wanted to stand up and shout at the server, the cook, the management, whoever it was that got it wrong at the restaurant and glutened the Dude.
But when it’s me I have to do it for, I wither a bit inside. Why? I don’t know. Being reticent is a new personality trait that came with my celiac diagnosis. I have to push through the inital feeling of embarassment or ‘dickishness’ I feel. This post cut to my soul.
Funny, isn’t it? I would have no problem standing up for a fellow celiac but not for myself. I bet you feel the same way because you already stand up for this community.
So, Dude, do it for US. Do it for Irish Heart and Rick and David and Miss Dee Meanor, for me and celiacs everywhere. Go ahead. Be a jerk… except to yourself.
Amen to all that, sister!! 😉
I was thinking the Dude–and anyone else who feels unable to “assert” themselves when we need to–should think of themselves as if they were a child.
Wouldn’t you be VERY insistent and protective if you were ordering for a child with celiac left in your care? yes, of course! So, from now on, protect your inner child and ask, ask , ask. None of us are being “difficult”; we are being wise.
(of course, you could be like me, pummeling them with questions, wooing them with my humor and chattiness…. and still get hit…arrgh!—but that’s the challenging hand we’ve been dealt and we gotta play it)
and P.S. Love your blog!….I just visited you…. and that avocado marguerita? looks yumsters!!….just what I need, another beverage to like… 🙂
I was talking to a friend of mind about this starnge feeling I get when eating away from home; not just in restaurants but anywhere. I think it’s actually harder to say no to loved ones. We have a phrase we throw around our street, “It’s not just food, it’s LOVE.” Maybe that’s the hold up. I don’t want anyone to feel unloved. Maybe I’ll tease it apart enough one day to understand it.
I asked my friend, would a cancer patient feel bad about taking chemo? She said, actually, yes. Her father often apologized when undergoing treatment.
So, I think you’ve added another piece to this puzzle: the inner child. Maybe I feel child-like and helpless in spite of the brave, avocado margarita embracing face I put on. I embraced this new life with zeal and enthusiasm; but deep down maybe I feel like my my body doesn’t love me or it would let me eat donuts and wash them down with ice cold beer! That’s what my inner child REALLY wants.
By the way… avocado margarita?!? Divine! Thanks for the read.
Man…you guys are seriously so awesome. You’re deep, intelligent, thoughtful. Not to be all ass-kissy, but I’m glad I know you.
Yes. Dad always apologized when he had to be driven to get one of many blood transfusions required for his anemia during the last 8 years of his life. I apologized every time I had to be driven to a doctor’s appointment or a physical therapy session because I was so gluten headed and weak and I could not do it.
You know why we feel bad? Because none of us WANTS to be this special or feel “needy”.
But it is what it is— and the less we apologize for it, the less self-imposed guilt we feel.
And YES regarding tending to the needs of that inner child, HOWEVER, the adult celiac self has to protect that inner child and say ” Gonna have a scrumptious piece of Flourless chocolate cake with ganache and an avocado margarita instead!” 🙂
LOL
Darn, I wish I lived near some of you peeps!…we could have such a grand time together eating fabulous GF food, drinking and laughing together in GlutenFreeLand ……
See, in my inner child head, I envision a world where WE rule the world and all the food and drinks are safe and yummy.
Agreed- I hate bringing attention to myself via this disease, despite the posts on this blog. Having to explain to a waiter or waitress who doesn’t understand that macaroni is made of wheat, or telling my grandmother that yes, even one little piece of cake can cause a problem gets really old.
Dude, we may have to order group tee shirts that say
“Yeah, I’m a Celiac! and I’m Proud to be Gluten Free!”
Maybe we should have a G-Dude convention (how big is your house exactly?)
although…….. Julie does live in Hawaii……winter is coming….hmm….
Now how cool would that be? We’re closing the pool in two weeks so come on down if you want to go for a dip 🙂
But Hawaii sounds pretty damn good to me!
A house full of celiacs in Hawaii? YES! We can drive all the “normal” people crazy, sounds good to me Oh wait, I live in Hawaii, there are no “normal’ people here, ya’ll will fit right in!
Avocado trees at our disposal, not sure they will make good margarita’s but definitely some good GF guacamole!
A-L-O-H-A, YA’LL (lived in SC for 5 years)
I’m gonna be ready for a trip by mid-January…. 🙂
Think I can get my Emeril deep fryer throught TSA?
hahahaha!! good girl, thinking ahead! 😉
Wow, I can sympathize with you here. I have been in the same position, and while I did not end up getting sick, I will have my husband telling me that I am not asking enough questions, only to leave the restaurant in a total panic worried that I will get sick, and that is so unenjoyable, I would rather have gone to the convenient store and eaten potato chips.
Thank goodness for websites like these. This year I found out I’m gluten intolerant. It’s part of my IBS. At 21 I’m a vegetarian by choice, and sensitive to everything else, not by choice. I have violent reactions to alliums, so all forms of onion and garlic, even in powders. I can’t handle acidic foods like citrus fruits or tomato pastes, and forget about having too mucj lactose. My system does better without gluten but its a very hard thing to avoid! I run into scenarios like these all the time. It’s so difficult to hang out with my friends and watch them eat delicious greasy pizza or smell the fries from McDonald’s, while I stay in my corner and eat my cardboardy NutThins. Sometimes I get so sad because I just miss being normal for one day! Aside from the jealous rage and depression that comes from all social eating, I have to convince my friends and family that its not me just trying to get attention, that I’m not just imagining the stomach pain and skin problems I get from gluten products. I don’t have celiac disease so it’s not quite the same reaction as you guys deal with, but I can feel the difference in my body since I’ve learned to avoid gluten. But like you I’m afraid to take control of dining situations. I usually just try to eat before we go out so I can just have a drink at a Restaraunt, but too many times I’ve sat there, starving and watching my boyfriend or friends eat while I try to assure them I don’t need their pity.
Hang in there Christina. As time goes on, it does get a bit easier to manage. I’d like to tell you that eventually, it it’s a piece of cake. (Did I have to mention cake??) But parts of your life will always be a bit of a struggle.
But I will tell you that you learn to adapt to it over time. It becomes “the new normal”.
Thanks for the encouragement. I guess for me, learning about all of this means growing up a lot. I can’t just have ramen every night. I have to take care if myself, learn to cook and eat new weird food like quinoa and lentils, and I have to stand up for myself and get other people to respect me and my knowledge of how my body works, even if they don’t get it.
I also forgot to mention that as my friends get accustomed to my new lifestyle they’ve tried to keep me in mind. They suprised me with gluten free cupcakes on my birthday and they’re trying. My mom is helpful too, since she knows more about cooking than I do we learn new recipes together. So it’s not all bad. Just different. At least I’ll have a leg up on my peers when it comes to being health conscious!
Christine, how do you know for sure you don’t have celiac disease, have you had your skin problems biopsied? All my tests were negative, blood, endoscopy….the gastro dr. saw the rash on my arms and legs and told me to have it biopsied and it came back as dermatitis herpetaformis. Plus, I had the genetic testing done….
And I totally sympathize with you. At your age it is definitely not easy. I was diagnosed in March and I am 56, and the social aspect of my life is totally different from when I was 21.
I’m glad that your mom is helpful, that is a huge plus in your life. hang in there, it will get easier.
I guess I can’t prove that I don’t have celiac, I never got officially tested for it. From what I gathered, so many people get negatives it’s barely worth it. I started eating vegetarian a year ago, which is when my IBS started getting worse. That isn’t uncommon in women my age. But as a vegetarian I was very lazy and eating bagels every day. That’s when I noticed my patchy “chicken skin” I call it, was getting worse. The last time it was that bad was in high school on the swim team. I assumed at the time that my dry skin was from pool water, but looking back, our team ate nothing but pasta and subway. When I researched gluten intolerance, I read that some people don’t absorb oils or nutrients which can lead to skin problems. So once I decided to try gluten free for a few weeks I noticed a lot of differences. My skin was less dry and bumpy, I still have some digestive issues but I don’t retain water weight like I used to, I don’t have as many stomach cramps, I don’t get that feeling… Like I’d eaten a newspaper. My seasonal allergiea are a bit better too. So I was pretty convinced that gluten wasn’t helping. I went to the doctor and she agreed, although she wanted me to eat it again and get some blood work but.. I’m cheap and I’m not gonna fight what’s workin for me
I love your blog
Me and my husband have had similar holiday family “nightmares” in the past. We got sick every time. Both of us. So I offered to cook the next holiday dinner myself. But after that I would like a potluck party and we will just eat only the meals that I cooked. It will be easier on me to not have to make food for everybody.
I also want to remind you all what I try to remind myself.
We all think we are cursed to be that way. And in a way we are. The good part is that we are blessed to know what was making us sick and if we are careful we will live happy healthy lives. I feel like my life completely changed after starting a gluten free diet. And with all the slip ups and mistakes that I guess were part of learning I remind myself that I am so lucky to know my poison. I was sick for years before i found out. Pretty much my whole life. I am trying to avoid it at all cost now. I also consider my self lucky that my stomach is an amazing “gluten detector” yes it gets me sick and miserable but it lets me know about the smallest amount of gluten there was. I thank my stomach for that. It helped me detect what spice my mom used to get me glutened. After she went out of her way to cook GF for me. She didn’t know about checking labels on spices. My stomach led me to the spice cabinet half hour after I ate. The label said wheat gluten clearly on the ingredients. Thats when she understood that i can feel gluten and trace it to the darn spice bottle that contained it. If you get sick infront of your family they finally get it. Almost feel like its worth that it happened. Gets hard to be misunderstood for a picky complaining paranoid hypochondriac. So consider yourself lucky to know what was poisoning you in the past and lucky if you have a “gluten detector belly” to tell you what to never eat again. Some people don’t feel it and its harder that way to know if you got poisoned. I try to use “my detector” to help people without one. Good luck to all of us and thank you for speaking up so we all can help each other and others.
Understood DD. I’ve covered my “thankfulness” for celiac many times on this site, even though honestly, I really hate having the disease.
Unfortunately my stomach detector doesn’t kick in until at least a day after gluten has entered my system somehow, So I’m always playing food detective.
I came across wrong … i guess. Not thankful for the disease. Thankful only that I know what I have to do to stop it. Other than that … Gosh. I hate it so much. I spent so much time planing , shopping, cooking,….cant leave the house without a bag with “survival” food supply – a freaking nightmare. I can’t go out to restaurants because I get glutened every time. It’s so sad. If I am thankful for anything it would be for people like you that make me laugh about it with a suitcase full of gluten free beer. And what I hate about it most is the ignorance in the food industry and the fact that there is a need of serious regulations and new laws. There is so many of us and I wish they cared to help us. But seriously thankful for gluten free beer.
Hi there.
I learned real fast that the barfing, cramping, general pain and all the other nastiness is not worth it. No matter how tasty and tempting something is the consequences are worse.
I hate being a pain in the ass to servers too. I spent 4 years being gluten, corn and soy intolerant. (I now have corn back and *maybe* soy, dunno, still can’t have soy sauce) I hate, hate, hate asking servers 400 questions. So now I call (with my PTSD making phone calls is an issue for me but the panic is better than the aforementioned consequences). I have a set script I use AFTER I peruse their menu and select options.
I ask to talk to the kitchen manager. The people at the front don’t know enough, general managers don’t either.
I ask about the steak – is it dredged before they cook it?
I ask about the baked potatoes – sometimes they’re soaked in melted margarine before they’re backed.
I ask about their deep fryers – do they have one dedicated to the fries? Or do they cook everything (from poppers to calamari) in the same server?
Gluten free items available? What’s the risk of cross contamination?
Once that’s done, I devise a plan with them, get their name, give them my name, the time and date we’ll be there and express my gratitude. Then when I go to the restaurant all I have to do is say “I am gluten, corn and soy intolerant [here I generally field sympathy and small amounts of horror, it happens] and I spoke to the kitchen manager, Joan, about my meal.” The server will smile, inwardly sigh with relief that they don’t have to figure shit out with me and trot off to find Joan.
The people I dine with are usually people I eat with often – at home – and they are tolerant of the small aside I have to take to do this. Then I can enjoy my meal.
There is something else I do too, but that’s a different conversation. 🙂
I used to think this way too. Then I changed “need” to “want” and my attitude changed. Maybe it’s a quirk of my mind, but I will do the opposite of whatever authority tells me to do… including me. So I have to remind myself that I actually want to do these things, or I rebel.