I had a dream last night. I was at a party and there was nothing for me to eat. It was a sit down dinner, so I couldn’t hide the fact that I wasn’t eating. As much as I tried to find something, I knew all the food was contaminated with gluten. I wondered out loud if this place had a gluten-free menu. Someone checked, they didn’t have one. Everyone around me was treating me like my condition was an annoyance. I ran out the front door feeling like an outsider.
Yes, this was a dream, but I think it was just an exaggeration of how I feel in social situations now. Remember, I was diagnosed with celiac disease in August so I have only been dealing with it for six months.
At first, I was relieved and even celebrated my diagnosis. It was so nice to finally have an answer for my illness. I asked you to celebrate with me and you did. Then in October, Gluten Dude left a comment cautioning me about the long road ahead. Instead of congratulations, he wished me best of luck. His comment was in perfect timing actually, because it was about a month or so after my diagnosis that I realized just how hard this would be.
I’m not sure what I was expecting. Maybe I thought eliminating bread and crackers and pasta wouldn’t be so bad. Many of my recipes were already gluten-free. Avoiding foods that made me sick was easy, and it still is. I’m never tempted to sneak a bit of a donut or a sip of a regular beer. There really is no temptation because I know what it would do to me. Maybe that’s why I thought it would be easy. After cleaning out our kitchen and making it a gluten-free zone, I have no problem cooking at home. Except for the occasional failed baking attempt (gluten-free baking is challenging!), eating at home has proven to be no problem.
What I didn’t anticipate was the difficulty in eating away from home. Whether it’s at a restaurant or a friend’s house, the risk for cross contamination is great. Ordering off the gluten-free menu doesn’t guarantee safety. Taking a gluten-free cooking class made me sick for a week. Going to a baby shower and realizing that I could only eat the fruit made me feel uncomfortable. As much as I enjoy socializing, I don’t like to be the center of attention. It feels like celiac disease sometimes forces me into the spotlight as I have to explain my dietary restrictions to the waiter or explain why my plate is empty at a party. Add to that the fact that I’m not avoiding gluten, but also dairy and all forms of oats while I heal.
And then there’s the fear. What if my food isn’t gluten-free? What if they didn’t prepare it in a separate pan? What if my friend used a wooden cutting board for this fruit? Do I risk it?
I really started to worry after getting sick from food at my parents house. Since my diagnosis, they have done everything to learn about celiac disease and make their kitchen safe for me. If I can’t eat safely at their house, where can I eat? Thankfully, they reevaluated their kitchen situation and the last time I ate there, I was perfectly fine. I am so grateful for everything they do to make sure we can still eat together, but it does point out that eating away from home is tricky. And if a friend or family member goes through the trouble to make me gluten-free food, I feel so guilty turning it down or telling them that it made me sick.
So this is my journey so far. I don’t have any pearls of wisdom just yet, except that it’s important to advocate for yourself and be vigilant about the food that you eat. As my friend Ashley pointed out, my celiac disease will in time help me to help others. I am thankful for that. But for now, it’s a difficult road. Gluten Dude was right.
If you have celiac disease, would you leave a comment? How long have you been living with it? Do you have any advice? Do you relate to my fears? What do you find the most challenging? I would love to hear from you!
i can’t even imagine how hard this would be! i would be a mess. i admire your positive attitude through all of this and i hope it gets easier for you!!
Thank you Lindsay.
Oh my GOODNESS! This is exactly how I feel! I’ve been diagnosed for only 8 months and I’m embarrassed to say how many times I’ve gotten glutened eating out. Just 2 days ago, my husband and I went to one of our 4 ‘safe’ restaurants, I went through the speech about having Celiac Disease and how important it is for the kitchen staff to be alerted…the waiter’s head bobbed and he looked bored…An hour after getting home I knew I’d gotten some gluten.
It’s so discouraging …this particular restaurant has a GF menu and assures me that the kitchen staff take precautions when they’re told the customer has Celiac.
I don’t know about you, but the doctor tells me that I’m very sensitive, reacting to the smallest amount of gluten. This means that I can’t live in denial, I KNOW when I get gluten and I pay dearly for at least 6 days after.
I appreciate this honest post, those of us w/ Celiac are risking a week of flu-like symptoms every time we eat out and somehow it helps to know that other people are in the same boat.
Hugs~
Robin
All Things Heart and Home
Robin, that is so frustrating! Especially when the waitstaff doesn’t seem to care. When they bring my plate out, if they don’t specifically announce that it’s gluten-free, I am suspicious. Even with all the precautions though, you never know what goes on in the kitchen. Makes you just want to stay home, doesn’t it? Thanks so much for your comment.
I have only been diagnosed a few months and this is the reality I am not going to easily get used to! Going somewhere with clearly labeled gluten free menu items and then an hour later knowing it was NOT GF. It makes me not want to eat out and then when I do eat out makes me jealous/angry I am eating a salad while everyone else enjoys an actual meal! I am not sure I will ever get used to that part.
I’m not going to say it gets easy to watch everyone else eat, but it does get a little easier. The hardest part is when you eat out and it makes you sick and you SWEAR you will never eat out again…but of course you eventually do because it’s just part of life. Hang in there.
We were GF for quite awhile so I know the challenges. I don’t have celiacs but have Hashimotos and they recommend a GF and CF free diet for that. I didn’t notice a difference at all for me. However I think gluten is very problematic for so many people even If you don’t have celiac.We are completely GF but we rarely eat it. It’s so hard to digest and our guts are in poor shape. I know it’s hard but just think how healthy your kids will be too 🙂
I often use coconut flour or almond flout for baking. Almond flour has a great texture. Here is one of my favorite muffin recipes
http://www.foodnetwork.com/recipes/giada-de-laurentiis/carrot-and-zucchini-mini-muffins-recipe/index.html I’m not a fan of grapessed oil so I usually use coconut oil or ghee as my oil in recipes. Good luck!
Thanks for the recipe link, the muffins sound delicious!
Oh I’m curious…how to you manage GF at Disneyland?
I’ve heard that Disneyland is great for GF eating, but we just brought our own food. I made a sandwich wrap in a brown rice tortilla and brought some peppers and hummus, and some fruit too.
My allergies also extend to yeast products so trust me it is a challenge. I even just tried dating seriously for the first time since October 2010 when I started finding out what was making me sick. Well so far dating has turned into a challenge. Which I am still single BTW. I hate to explaining why I don’t eat bread or drink beer. I make sure I eat before I go out or check online for a menu ahead of time. When I have a family function I make sire to take a dish or two that I know I can eat.
What keeps me going is knowing that if I stick with my diet I don’t have to worry about medicine. I have been off every Dr. Prescribed medicine for over a year and I have never felt better. I don’t feel bad or make a situation awkward because I know that I’d rather feel good than be sick. If people can’t take the time to understand what someone is going through than they are just close minded. Don’t look at it as a disease its a healthy way of life.
Stay strong and please don’t be afraid to ask for recipes I decided when I changed my diet that I wouldn’t do without. I can make anything gluten free and yeast free. I habe friends that want to eat at my house because the quality of food that comes out of my kitchen is better than what they have eaten. Never a disadvantage, maybe a challenge but we all have challenges.
No red meat, yeast, gluten, dairy…. It can be done…. Stay positive!
Thanks for the encouragement Kelli! It is a challenge, but like you said it is so worth it.
You probably do this already, but when we were vegan I used to offer to bring a vegan dish to pass to dinner parties, cookouts, church picnics, etc. Then we would usually eat a small meal at home before going so we wouldn’t be famished. It doesn’t help with eating out, but is a nice solution when you’re a guest in someone’s home. (And usually the hostess was relieved to not have to come up with something herself.)
The other solution is for you to move to Ann Arbor. 😉
Thanks Cassie, I do make sure to eat beforehand and bring plenty of snacks or a dish of my own. That’s a good point that the hostess is relieved, I hadn’t thought of that.
Does Ann Arbor have baseball? 🙂
I echo the suggestion of eating a small meal beforehand, and bringing something you can eat. When going out, I suggest a restaurant that in my experience has been safe. I’ve been GF for a year, and also have the experience, many times over, of inadvertently eating gluten. I treat it like trial and error; eventually I will identify the places I can trust.
Thanks Kris. Trial and error is really the only way you can do it I guess…I just wish there weren’t so many errors!
Wow! I totally can relate and understand. I’ve been gfree for three years now, and I can say that it does get better. It’s a long road to get there, but it’s doable. 🙂 The first year-year and a half were much harder than the last year and a half. I can totally relate to the awkwardness and frustration of having to be the center of attention. It’s just so weird to demand attention all the time regarding your diet, while hoping and praying that you’re understood to have an allergy and aren’t just picky or on a diet. I’ve been fortunate to have my hubby as my advocate and he’s really helped me look at the positive and make the situation lighter. He’ll tell wait staff, “her head will fall off if she gets near gluten!” ha! Or the simple,”please be careful and make sure her food is all prepared separate and with clean pans and utensils…I don’t wat to put up with her for the week that she’s sick!” his sarcasm really seems to help the wait staff understand!! 🙂
Another thing with going out to friends houses, is we’ve learned to have most come over to our house…especially if they’re super unaware. But as people become more aware, because they care about you, they learn along with you. It’s crazy what happens after they see you order at a restaurant or prepare food somewhere…I think it opens up awareness. Again, this all sucks because you’re forced to draw attention to yourself, and like me, it sounds like you hate the feeling of being a burden. But, I can tell you, during MANY times of tears my husband assures me I’m not a burden unless I make it feel like a burden. He understands (as most friends and family do) that it’s not a choice. And yes, you will and are helping so many!
I’m amazed the doors that have opened through having Celiac disease.
With traveling, man, how you make plans totally changes. It goes from where do I want to go to where can I eat at? It definitely helps to bring snacks! And hearty snacks…Most trips I bring nuts, protein bars, apples, Udi’s muffins, string cheese (I know you can’t have dairy…but the nuts and muffins are great for keeping a tummy full and happy). But it’s so worth it to not have to chance it at some weird gas station as you travel.
Someone mentioned Disneyland…that place is AMAZING when it comes to allergies! Go to guest services when you get into the park and they will print out a list for you of all the places you can eat…pizza, pasta, chicken, waffles, pancakes! Tons of options! However, very skimpy options at California Adventure…not sure why?!? Downtown Disney in Orlando is great too! They’ve got Babkcakes NYC!! (donuts and cupcakes baby!) Planet Hollywood is also great!
This is definitely a learning process…I have to take digestive enzymes and probiotics to ensure my body works well….but how I feel now versus a few years ago makes it worth it!
Best of luck to you, Alyse, and others who read this!!
Thank you so much for the encouragement Rachel! Your husband sounds hilarious. I like his approach!
Celiac is definitely teaching me to plan ahead (not usually a good planner), so I always have lots of snacks with me.
We didn’t eat out at Disneyland, we just brought our own food. Sounds like they have a lot of options though, so that’s good!
What digestive enzymes and probiotics do you use?
Youre welcome! He is…my husband’s been a huge blessing through all this.
As far as enzymes…I have a gallstone so I use one from our local Lassen’s that contains ox bile (awkward, huh?!). I’ve used betten aide, which was good, but didn’t do enough for the gallstone. I just started using Celiact (but only in 1/2 dose, so just 3 pills a day, per my dr.’s suggestion). It seems to be pretty good…plus it’s got probiotics in it! My dr suggested the lower dose, b/c there’s a high amount of calcium in it. I also take fish oil and extra magnesium and b-12.
I’m still a work in progress…trying to find out what works best so that I don’t just feel ok, but feel GOOD! 🙂 but, God is good, so I’m just taking it day by day.
And yes, Disneyland is super accommodating! Everywhere they tell you just to ask to talk with the chef or manager and they take care of you!
Sorry I wrote so much again! Ha! Can you tell I’m a teacher?!? I just keep going and going…
Hope this helps!
I have been completely off gluten (other than moments of being glutened) for 6 months as well! I never got tested so I am not officially Celiac (I don’t have the money to pay for a test right now, and I heard it’s not always accurate), but had many severe health issues that all went away when I cut out gluten.
I have felt really liberated knowing this, and to be able to go out without spending the rest of the evening sick. At times I find it challenging going out and knowing where I can eat, and sometimes suffer from what I call a “gluten hangover”, but try to heal it with rest and lots of really clean eats and probiotics.
It’s a challenge, but so much better than my life of being sick all of the time!
Gillian, thanks for reading. I’m glad you are feeling better off the gluten. Do you find yourself to be really sensitive? I know a lot of people haven’t been tested and are off gluten for years, then they don’t want to have to eat gluten to be tested later. Do you think you will ever be tested?
I’m tempted to be tested to know officially, but afraid because my reactions are pretty sever: throwing up, incredible fatigue, sore joints… I had a small amount of soya sauce recently and felt sick all night. Still, I’d love a diagnosis!
17 years and all of this makes sense. Keep doing what you’re doing and sharing your knowledge. My best advice is always ask for help. I’m proud of you for making such amazing progress in the time that you have!
Thank you Ken! I appreciate your help and support so much.
Hey, I am so sorry, I know it really stinks. I don’t have celiac, but my oldest son, who has had Type 1 diabetes since he was 16 months, was diagnosed with celiac 4 years ago, a week before he started kindergarten.
Honestly, when it comes to eating in social situations, I think it is easier to deal with the diabetes than the celiac. When it was just the diabetes I could usually fake it by watching his portions, giving him extra insulin, guesstimating the carbs, but with celiac, there is no faking it. You can either eat it or you can’t.
We have not been really adventurous about eating out. We hit In-N-Out for an allergy-friendly protein burger, fries and a drink once in a while. (We have always had good experiences there. They have an allergy button on their cash registers, and I have just always been really specific with them.) We’ll go out for ice cream once in awhile, usually a place where we can get soft serve or a pre-made, individually wrapped treat, and we used to have a place we trusted that we could get a gf pizza. I’m sure as he gets older, we’ll have to go out more, but it just hasn’t been worth the effort. (If we want to eat something that we would normally get at a restaurant, I try to figure out how to make it.)
The grandparents have gotten pretty good, but I always take back up food and condiments when we stay with them, and I know I have offended my MIL when I suggested that her butter might be contaminated. We have a few friends with gf family members that we trust to feed him.
My advice is to buy a big purse. (I already have one to drag around the sugar meter and the glucose tablets.) And I always carry around a treat/snack for him, just in case. I hate it when we end up somewhere and there is a treat for everyone but him. Sometimes it’s a Kind Bar, sometimes it’s gf granola, or nuts, or gf pretzels. I send snack size M&Ms to school for his teacher to keep on hand in case someone brings in cupcakes. When they have a party at school, I find out what they are having and send a “party in a box ” — kind of a bento with a good variety of things he can eat that are similar to what the other kids are eating. (Actually I try to make sure he has better food than the other kids. I figure if they are envious of his food, he’s not going to feel bad about it.) When we go to a church dinner, I find out what they are eating, make him a similar meal or one he likes better and pop it in their microwave. Anytime there is food, I volunteer to help with it or bring it so that I can make sure he has something to eat.
If you are going to bake, I would suggest trying Annalise Roberts “Gluten Free Baking Classics.” Her palate is right on, and I have found her gf baking to taste more like non-gf baking than anyone else’s. Check out the reviews on Amazon. She also has a web site, http://www.foodphilosopher.com. I think that it is often easier to find a reliable gf recipe, similar to your own, and then to tweak the seasonings or ingredients, than it is to try to convert your own recipes. I use her pumpkin cookie recipe, tweak the spices to match my Mom’s, and throw in chocolate chips instead of icing them with a glaze. Wa lah! Grandma’s Famous Pumpkin Cookies– Gluten Free.
It’s a pain, and I’m not sure how to make it better, you just learn to cope. You try to educate the people around you. I can say however, that even in just the 4 short years that we’ve been dealing with it, awareness of celiac seems to have increased dramatically, and gf products are much more widely available. That alone makes me feel kind of hopeful for the future.
It might be cold comfort, but I’m sure it will make you a better dietician. Over the years, I have worked with great specialists — dieticians, endocrinologists, gastroenterologists. All of them gave me great information, but the best information and advice came from a endocrinologist who also had Type 1 diabetes. Because he had the same experience, he not only knew what he was talking about, he knew what I was talking about, because he lived there, too.
You might already have, but if you haven’t, I would say find a support group. I have never been big on going to groups, but I do use an online celiac support group. I get the best ideas there, hear early about new products, and talk to people dealing with the same kind of problems.
OK, this is turning into a novel, so I will stop, but I hope you can find something here that helps or makes you feel like you are not alone. You are right, it isn’t easy. But it is worth doing as well as you can. Hang in there! Tiffany
PS If you look at my blog, don’t laugh. My sister has diagnosed me with BADD, Blog Attention Deficit Disorder, and although I left it up, I haven’t blogged there forever. 🙂
Tiffany, I appreciate your long comment! I can’t imagine having to do this with one of my kids going through school. I haven’t had them tested yet, but I pray they don’t have celiac. It sounds like you are doing an amazing job at advocating for and protecting your son while making sure he is happy with his treats and snack. Good job!
I definitely carry a bigger purse than I would like to, and it’s always packed with snacks!
I appreciate what you said about how this will affect me as a dietitian. It’s already making me realize what a difference there is between learning about a condition and actually having it and going through it yourself.
I don’t have Celiac, and have never been gluten free, but I can relate to your comments. Two of my children had fairly extensive food sensitivities (dairy, soy, egg) and the entire time I nursed them (2+ years each), I had to eliminate those foods from my diet, as the allergens are passed through breastmilk. I was often left feeling like my dietery restrictions were an annoyance, a nuisance and on several occasions it was even suggested that I was just making them up. It was compounded by the fact that a lot of people could not understand why *I* would make this “sacrifice” when I could simply give my children formula (that’s a whole ‘nother issue, as I am sure you can appreciate). It was tough, but like you I was never tempted to eat the offensive foods because I saw what it did to my children, and the affect impacted our whole family (think screaming babies and two very sleep-deprived parents). I did my best to try to educate those around me, but it was never very easy, and I felt a lot of frustration. I was very thankful for a supportive husband and immediate family. I hope that the support you find in your family, and in your readers here, is helpful to you.
Teresa, I am so sorry you had to go through the “it’s all in your head” situation. That is so frustrating! Good for you for sticking with it and nursing your kids. That is definitely inspiring.
I have a friend and a sis-in-law who are GF. What was that about a wooden cutting board? What about bamboo composite boards? SIL ate here Friday for my son’s 2nd birthday party. She had ribs with store-bought bbq sauce, fruit salad, spoonful of extra frosting! Only the mac and cheese left her out. I meant to make GF pasta for her, but goofed. I haven’t ever heard her mention if she’s gotten sick at my house. I hope/think that she would. She likes Eclectic Cafe here in Tucson if you ever pass through again.
Katie, wooden cutting boards and wooden spoons are very hard to get clean because of the grooves left in the wood. I tossed our wooden spoons, and only use the cutting board as a backdrop to food photos now. Not sure about bamboo since it is self healing…but I would look for scratches. I would definitely encourage her to tell you how she feels after eating at your house!
As I said in my tweet to you, I would have been happy to be wrong. But I know the devil in this disease. A lot of the blogs out there, as wonderful as they are, profess that life is wonderful without gluten. I just had to douse you with a bit of reality. Life is indeed wonderful. But it’s not always easy.
Keep the faith and stay healthy!
Thanks Dude. While I am an optimistic person, I am finding myself getting really annoyed with all of the articles saying “gluten-free can be easy!” It’s not. Unless I only eat at home for the rest of my life, it’s just not. I appreciate your support.
I am right there with you. I am coming up on my one year point. Everything at home is great – it’s the eating out where I become a freak about where I can eat now and what. I often tell my husband to go with the kids by themselves. I don’t think it’s fair for them not to enjoy eating out too. Often they go on my one night when I work a bit late.
Hang in there. I have found I have become a more creative cook and happier eating at home. When we do go to eat out I choose very, very carefully. I too am avoiding dairy and now attempting soy removal. I also can not have tomatoes. I used to think all the people with long lists of dairy restrictions were a bit odd…not a thought for me anymore! : )
Wendy, I often go to restaurants now and just sit while other eat. Kind of stinks, but at least I can socialize. Eating at home is great though, and I love being creative in the kitchen!
I have done that too ~ pre-eating works and you still get to have the social experience.
Oh ~ and I meant “people with long lists of food restrictions”!
I am so sorry that you have to deal with this. I can’t imagine the frustration of worrying about every single thing you put in your mouth. I don’t have any advice to offer, but I do want you to know I feel for you and hope it gets easier! xo
Thanks Janetha. I know it will get better…maybe not easier, but better.
Everything what you just said in your blog but I’m left with no words. Just like you, I was very happy when i finally got diagnosed thinking my digestive system will soon go back to normal as long as i avoid gluten.
I’m at the point where you are and cried a few times thinking about the long road ahead. It is what it is. I try to think about what I can do and not what I can’t.
I was diagnosed last June and going through similar issues.
Believe me, I have shed many tears of frustration about this. Hang in there!
Hi, my name is Tina and I came across your blog site through another friend. I have not been diagnosed with celiac but feel their is a possibility that is what could be making me sick. I do stay extremely fatigued and sick feeling and it is every time food goes into my mouth. But I did go by the bookstore and got a cookbook by Elisabeth Hasselback Called Deliciously G-Free. She gives alot of baking tips so I hope this helps you. You can reach me through facebook or E-mail.
Some very insightful thoughts here and a nice reality check (in a positive way) for others who are fairly new to celiac disease and diagnosis. It is possible to become overwhelmed with all that you have to deal with (social, physical, environment, etc.) in the different aspects of handling this disease. It sounds as if you are on pretty solid ground with the bonus of having your family as part of your support network. Keep up the good work! Very nice blog. 🙂
Hi, I came through your comment on Big Mama’s blog. I’ve been GF since 2001 and had the same feelings as you describe about being the center of attention, the nuisance, etc., at restaurants. Truthfully, I just had to get over it. Even though I was dying of embarassment inside, I had to speak up or not eat. It was a growing experience for me, one I probably needed, celiac or not. It is and always will be a pain to find restaurants you can eat at, and to explain again and again…but hopefully you will find a few that become your “go-to” places. Beware most sit-down chain restaurants unless they have a GF menu on their website…many don’t actually cook their own food, and even the kitchen staff may not know what is in, say, the spice rub on a chicken dish. But more and more of the chains are becoming aware. Outback is a stand-by for me, and the ones in my area seem to have wait staff that are aware. Still, even if I know what I want, I always ask to see the gluten-free menu…it makes the point for me and then I can make sure to say….salad in a clean bowl, like it says here…etc.
I rarely get sick from being glutened, or if I do it’s an annoying next morning and that’s it, but I still try to be as careful as I can. What can also help is typing up your dietary needs on a business card and asking the wait staff to give it to the kitchen staff. I am very suspicious if a waiter just stares blankly at me, and having it in black and white makes it easy for the waiter and a better chance of the info getting back to the people who actually make the food.
The most awkward thing is when new acquaintances invite you to eat at their house. But, hey, if they are going to be put off by either cooking for you or switching things up to come to your house instead, they will probably not become close friends anyway. 🙂
I went gluten-free about a month or two before you did. And at first it was exciting for me too, but… yes, the eating out is HARD. Our social circle goes out a lot and has a lot of house parties, and it IS hard. I know what you’re going through, and just want you to know that you’re not alone in this.
If you come up with any wise words of wisdom about how to make it easier, please share with us all! 🙂
Wow. Well I think you can already see from the immense number and length of responses that you are not alone! I am not gluten-free but I do prefer to limit wheat, I am picky about the way things are cooked, and I’m a vegetarian. With all that, I can definitely relate to the worry about what will be served at an event, fear of offending the host by not eating, even if tehy TRY to do something they think is right, and the frustration with having to explain yourself to others. It can’t be easy, especially when your health crucially depends on it. I sympathize and wish you the best. Fortunately, dietary restrictions and issues are gaining more mainstream attention than ever before, so we can only hope that people will gain awareness of, learn about, and respect the diversity of diets that people must adhere to.
My 4 yo daughter has to go gluten free even though she doesn’t have celiac disease. She has fructose malabsorption. I get your frustrations. I always try to call ahead if we go out or search their website for what she can eat. I usually end up bringing her own meals. Class parties are no fun either since she has to sit at the allergy table like an outcast. All I can say is it gets better/easier in time.
[…] easy enough to live with, but gluten? SO hard to avoid. Alysa of InspiredRD wrote about the difficulties she faces with celiac’s, and I see it. I mean, I wanted a simple Greek salad with gyro. No can do. Daphne’s gyro […]
I can’t imagine what you’re going through. I’m guessing that my life change (that I feel is HUGE) is about 25% of your life change.
You do know that you are the reason I decided to “try” not eating gluten to see if my crazy symptoms went away, right? And not only did my stomach issues get better, but I am now able to blame it on some of my migraines and joint pains that my doctor thought was arthritis.
I have a small glimpse into what you’re going through, and I can’t imagine. Your family is amazing, as are you.
I was diagnosed 2 years ago. There are times when I feel like I’m getting the hang of it and times when I just want to stomp my feet and have a temper tantrum. Eating out and vacations are definately the hardest for me. My biggest problem, which seems to be completely different from anyone else’s is that my husband isn’t very supportive. Well he is sometimes and others he gets so annoyed with it all. I don’t have reactions of any kind when I eat gluten. I found out I had celiac kinda by accident. I had an endoscopy due to heartburn and he found the celiac instead. So it’s hard to accept when I was never sick in the first place. And not for nothing but I still have terrible heartburn. So my husband thinks this is all a misdiagnosis but I’ve been to 3 GI docs who all agree based on the biopsy it’s celiac. I guess some people are just asymptomatic. It’s nice that I don’t get sick when I eat out but I also never know if I’ve had a safe meal or not. The damage is still being done either way. As far as vacations I bring breakfast lunch and snacks for myself and take my chances dining out at dinner. Really puts a whole damper on the vacation but I just try and watch my kids and remind myself it’s not all about me anyway. I think it’s just a long journey full of ups and downs. Good luck!
[…] Day! First of all, I wanted to say a giant THANK YOU to everyone who commented on or shared my post yesterday. I loved reading your stories and finding out that I’m not alone in what I’m feeling. […]
I don’t have confirmed celiac, but my doctor told me to stay away from it after I started having problems about a year ago. Gluten intolerance is related to my Ehlers Danlos syndrome.
I totally can relate to this! So far I haven’t needed to be as careful as you, but when I do eat something accidentally I am knocked out for almost a week. 🙁 I don’t like feeling like a burden, either. My friends that I normally eat with know about my gluten issues, but at a work party the only thing I could eat was pineapple (now I’ll really sound like a baby: fresh pineapple gives me a stomach ache because it’s so acidic). So I usually eat a very big meal beforehand and put munchies in my pockets if I’m going to things like that.
One friend once told me that she was so impressed with how I am always prepared with healthy foods and snacks, wherever I go. I told her that it’s not a matter of a commitment to healthy living, it’s just the only things I can eat happen to be good for me! You’re right though, it is hard, and it takes a lot of extra time and forethought to plan out a whole day’s worth of food when you’re just trying to get out the door on time. My little playmate cooler is my bestie 😉
oh, sweetie! what a journey. i have three friends with celiac. I have heard similar struggles from them. press on, much love to you.
Coming up on 4 years… and I still hate eating out. It still gives me anxiety sometimes. But… overall – I’m comfortable in my own skin now. I don’t feel bad saying no. I don’t feel bad telling people “I’ll only eat at x,y,z” and I don’t mind walking in somewhere, asking questions, and walking out if they don’t make me 100% comfortable.
It gets better (I’ve written about that aspect – I promise it does!)… but it gets better in a way you might not expect. For me, it really is about finding myself in a gluten filled world – and finding the comfort in saying no or finding my limits. And that there’s nothing wrong with that – and people can suck it if they don’t agree. 😉
Just started on this path also, 5 weeks in!! Never thought about cross contamination!! Thanks for the heads up and I will be reading the start of your path. The more support I find the more I understand.
[…] February brought the most popular recipe of the year, a trip to Disneyland, and the realization that having celiac disease is way harder than I thought it would be. […]
I have been gluten free for 10 years now. and it is indeed a challenge. my home is gluten free and my friends with whom I eat are accommodating and will make me either separate meals or go GF themselves when I visit. However eating out is indeed a huge challenge. I will bring my own crackers( and often my own food- or I will eat before a party) and as much as I also hate making a big deal about it there’s not much option, I also have to deal with Nightshades allergy( potato, tomato, all peppers and eggplant and sometimes THAT is a bigger challenge, as well as Soy and Corn and refined sugar. when I find a new treat, or item I can eat I will stock pile them ( Sami’s bakery in Florida is a great resource. awesome GF breads. I also have NO desire to cheat ever, as the 4 day vomiting migraine is quite enough punishment. ALSO medical hints, look at Leaky Gut syndrome, and also LYME Disease!! Good luck.
I can relate to everything you wrote, especially this part:
“And if a friend or family member goes through the trouble to make me gluten-free food, I feel so guilty turning it down or telling them that it made me sick.”
This is the absolute worst for me, when people are going out of their way to do make things they think I can eat, and I just get sick every single time. I am very sensitive (not diagnosed celiac but I have done genetic testing and I have the genes for it and was told I could develop it. Maybe it’s *just* gluten intolerance but it seems like celiac to me even though the blood test was negative) and will be sick for a couple weeks after the slightest exposure.
I just feel bad saying no after people keep trying to reassure me that they used a different pan or washed their hands or whatever. But then I keep getting sick and I know that was the cause. So finally I put my foot down and I just say “please don’t make anything for me, don’t go to the trouble” etc.
I have not had luck with restaurants which are not 100% gluten free (of which there are none in my city). People seem to think we have so many choices because they see gluten-free items on so many menus.
I just don’t eat food that was prepared outside my home (unless prepared in a gluten-free kitchen)– it’s not worth it. My friends love to cook and have gardens so the food is always amazing, and it’s hard to watch everyone enjoying it. I can think about how I’m not going to get sick by abstaining from the feast but it doesn’t really make it all that much less hard.
[…] being my celiac confidante. For understanding when I advised that celiac perhaps is nothing to celebrate. For a friendship that, even though we’ve never met and we’re 2000 miles apart, means […]