Kaycommander October 12, 2015 at 12:02 pm #13280
Hi everyone! I was just diagnosed with celiac disease about 2 months ago. I’m 25 and up until my diagnosis, I was living life like a normal young adult (aside from the mysterious, random symptoms). I’m definitely still adjusting and I would love to connect with people who are in similar situations or people who have already been through this!
Kayli from Colorado
GFgirl87ParticipantGFgirl87 October 16, 2015 at 10:31 am #13305
Hi Kayli! I was diagnosed with celiac just a few months after turning 27 last fall, and it’s been a tough year! Grocery shopping took me a long time in the beginning, but now I have my go-to foods and have gotten quite good at cooking (always double check labels, though, because companies can change ingredients…). The hardest part of celiac for me has been dealing with it in social situations – finding safe restaurants is still a challenge, and I hate having to explain how having GF options is not good enough and that places have to understand cross contamination in order for me to *hopefully* eat safely. Weddings, holidays, work events, and travel also stress me out, but I make sure to bring food with me or eat beforehand when possible. It’s not easy, but I’m lucky to have family and friends who are willing to listen and respect how diligent I am about taking care of my health. Stay strong and don’t take a chance with eating something just to please others! It’s not worth it. And don’t beat yourself up for making mistakes in the beginning – it happens! Hope you feel better soon!
-GFgirl in NYC
Jenna1991 December 3, 2015 at 3:44 pm #13723
Hey Guys! I’m a tad different…I’m 24 and was diagnosed with Celiac Disease when I was eight. For me, I barely remember life before gluten free. It’s very for me to eat gluten free, as it is second nature. The hardest part of celiac disease for me was studying abroad, eating in my college dining hall, and office functions (when I was still new). For me, my family and friends are fantastic and always more than accommodating and making sure I don’t feel left out.
I’d definitely say it get’s better with time. Especially in my case, because back then there were barely ANY gluten free products, and the ones that did exist were absolutely disgusting!
PFlores22ParticipantPFlores22 February 2, 2016 at 7:49 pm #14026
I’m 23 and I was diagnosed on September 14th of 2015. For years I was getting sick and I never knew what was wrong. when I found out I had CD it was tough because I was eating just like everyone else and all of a sudden I had to change the way I ate. In a way I’m kind of happy because I’m eating healthier and Im finally able to lose weight. But I get sad time to time when I see family members eating things that I can no longer eat. I hate that I constantly have to read labels, I also hate when I accidentally get glutened. I get sick for like a week.
jenw703Participantjenw703 February 4, 2016 at 10:27 am #14059
Im Jen and I’m 25. I was diagnosed-then told I didn’t have it- then told i definitely DO have Celiac. :( I also found out that my VIT D level is super low and have MAJOR anxiety issues… This all has been going on for about a year now. I pretty much have the I can go to the grocery store and buy meat and veggies and thats all I eat but I am going crazy. I keep looking things up online – like I can’t have coffee or coke or whatever and then I find an article that tells me the exact opposite of what I can or cannot have!!! Its making me crazy and my husband doesn’t want to even begin to deal with me. Needless to say I still feel like I am on step one and kinda need to talk to someone or someones that can help me figure all of this out. Unfortunately there isn’t any chatrooms that I can find that will give me instant satisfaction… Anyone have any advice? I am married and have 2 small children- do I need to switch everyone over to gluten free?
PFlores22ParticipantPFlores22 February 4, 2016 at 12:30 pm #14062
Some people can drink coffee and coke and it doesn’t affect them. Gluten is hidden in both of them. For me I can’t have any soda products because they have high fructose corn syrup and caramel coloring. Also I just took coffee out of my diet and I’ve felt a lot better. I understand what you mean when you find one thing out and than a website tells you otherwise. It can be confusing. You just need to see what bothers you and than you will know what to avoid and what you can eat. You don’t have to switch everyone over to a gluten free diet unless you want to limit cross contamination. But you shouldn’t let others go on a gluten free diet unless they have celiac disease or they have a gluten intolerance. If you ever just want to talk I’m here for you. I’m still new at this and everyday is a new day to learn something new.
Kaycommander February 4, 2016 at 12:48 pm #14063
You are not alone! I’ve been diagnosed about 5 months and I’m still very confused about what I can and can’t have. I do lots of research and always find conflicting information! I don’t know anyone else with Celiac so I often feel frustrated with no-one to ask. I also miss normal food and I’m tired of the limited choices I’ve decided are safe. Hopefully we can both figure this out.
JadeCasParticipantJadeCas March 28, 2016 at 3:26 pm #14327
Hi My name is Jade,I am 26 .I have been diagnosed fully since last year.I have been suffering with celiac symptoms for years probably since 5 or 6 years old.I went to many doctors who stated an allergy till last year.I am now learning to live gluten free so its been a hard struggle but i am so fed up of being sick and frustrated.I am this forum helps me knowing i am not alone.
zoetwParticipantzoetw May 31, 2016 at 10:01 am #14757
I’m about-to-be-26, and was diagnosed about 3 months ago (although my doctor said that based on my biopsy I’ve probably had it for ~10 years). My roommate also has Celiac (and has had it for about 8 years), which is a huge help, but it’s still a struggle. I’m not the most extroverted to start with, but now I’m afraid to even go out to events because of the food situation, and the loneliness is starting to get to me. The grocery shopping/actual food isn’t a huge problem for me when I’m home, but I will have to do some traveling for a conference this summer and I’m terrified, since I have *no* idea what to expect from the conference center, the hotel breakfast (hello fruit and that’s it?), and airports…
Advice on socializing, travel, and/or making friends in your 20s?
Jenna1991 May 31, 2016 at 10:15 pm #14766
I’m not extroverted either and for me in new social situations I personally don’t like to call attention to celiac. I get tired day in and day out of having to talk about it and advocate for myself. When I’m in a new situation that involves eating out at a restaurant I always order something I know is naturally gluten free like a salad, veggie platter or fruit. Or I call ahead of time and let them know I’ll be coming in, etc. I did this at first during lunch meetings and it seemed to work!
It’s hard going out to bars with friends because bar food is not gluten free friendly and I’m often left hungry after a night out, but I always make sure to eat a lot beforehand and I typically always have a granola bar or something in my bag that I can eat in a pinch!
Work conferences shouldn’t be too difficult. I would imagine they have to cater to a lot of different allergies and eating preference/styles so I’m sure you’ll be able to find something! You could let them know beforehand if you’re worried! with hotel breakfasts I typically stick with the fresh fruit, yogurt, and eggs.
I typically don’t buy food that often in airports but I know they always have fresh fruit, boxed salads, and the shops usually have mix nuts, dried fruit, chips, granola bars etc. traveling sucks because you want to be able to just grab whatever you want real quick, but you can’t. I usually pack food with me in my carry on (cereal in a bag, fruit, pretzels, granola bar, peanut butter and jelly, etc)
Eating out with my friends and traveling with my friends isn’t as big a deal as it used to. I quickly stopped hanging out with the “friends” that basically said i was an inconvenience and started hanging out with my friends who didn’t care if we only went to a restaurant that gluten free options or that we couldn’t just stop randomly on the road for food on a road trip.
I hope some of this helps!
leonamarieParticipantleonamarie June 4, 2016 at 10:03 pm #14781
I am 23 and got diagnosed a six months ago. I have loved reading everyone’s stories, it’s so good to know I am not alone at times when I feel like no one really gets it! I come from a traditional European family so I pretty much grew up eating pasta. It’s been a big adjustment for me and them, to now eating not only no gluten but also no dairy (lucky me)! I find it really difficult with people’s lack of knowledge on coeliac disease. I dread going to someone’s house and having them try to be helpful by cooking what they think is gluten free and always ending up sick. I hate going out and dealing with the comments. Every little comment annoys me “is your gluten free food okay? are you feeling sick yet? Just have a little bit of this, a little bit of gluten will be good for you! Just take the bread And cheese off, problem solved!” I HATE IT!! I hate explaining myself, every single time!
I’m going to Europe in three weeks, England, Amsterdam, Germany, Switzerland, Italy and Spain. I am freaking out. I don’t know how I’ll cope! Any advice?
Jenna1991 July 1, 2016 at 1:13 pm #14993
I haven’t been abroad yet but I’m going to London, Paris and Barcelona in the Fall so I’ll be in the same boat as you. I downloaded a free app called GFRegistry and it basically says all of your dining requirements and needs to tons of different languages. I’ve actually used it out here at a Mexican restaurant and it went perfectly! I use alot of apps like “Find Me Gluten Free” for finding places to eat on the regular but I’m not sure if that would work abroad or not!
The only advice I think I’d have is when you’re ordering out especially abroad, is to try and keep your meals simple. Especially where there is a language barrier, it’s probably easier for them and safe for you if you just order something simple that can be adjusted to how you need it.
Kaycommander June 27, 2016 at 11:11 am #14956
Hi everyone! I’ve been diagnosed almost a year. I’m still waiting for things to be easier. I’ve become the outsider of my family (they no longer invite me to functions because I can’t eat) and I’m tired of the very limited food options. I’m still confused about what I can eat and drink. I don’t know anyone with Celiac Disease despite desperately trying to connect with the community. I’m feeling hopeless. Any suggestions or advice?
Jenna1991 July 1, 2016 at 1:21 pm #14994
I’m so sad to read that your family doesn’t invite you to functions because you can’t eat. I’m sure there is SOMETHING there that someone can accommodate for you. Whether it’s a family function at a restaurant or at their own house, there should always be something you can find and feel safe eating, even if it is always salad or fruit or steamed veggies or something. Maybe next time if you go to a function at someone’s house you can bring your own food? That way you aren’t isolated completely but can still participate in the activity. I used to do that a lot. I would ask what they were cooking and either offer to bring a dish for everyone that I knew I could eat, or I would bring my own portions just for me that replicated what everyone else was eating.
My advice for the newly diagnosed is to always focus on what you can eat as opposed to what you can’t. Veggies, fruits, nuts, etc are naturally gluten free. Chicken, fish, meat, etc is also gluten free depending on the sauces and how it’s cooked. I like to tell people that are newly diagnosed to come up with a list of their go to foods, favorite meals, products, snacks, restaurants, and then go down that list and find the gluten free equivalent. The only thing that really changes is the convenience of eating, shopping, cooking, etc of regular gluten food. That’s it.
https://www.influenster.com/member-2a1f483cc/my-top-gluten-free-products I have a list of some of my favorite products here if you want to check them out :)
christinemsmithParticipantchristinemsmith July 8, 2016 at 1:38 am #15026
That is super frustrating about your family. I was diagnosed in July 2015 and it is extremely tough. I would concur with the thinking about what you can eat vs what you can’t but I often also get super annoyed, even with my boyfriend (hellloooo road trip french fries – cannot handle it). I had to learn to cook a bit more. I was really reliant on the things I was comfortable with and found that most of them were not gluten free – super aggravating.
It is really tough and I’m sorry. I am learning to cook more which is making it less annoying to smell yummy things and have no options that I think are also tasty. I hope you are able to figure out some things that you can bring so it feels less awkward and uncomfortable. I hope you are able to find some peace for you and with your family.
Kaycommander July 10, 2016 at 1:01 pm #15039
Thank you so much for the kind words and support! I’m sorry you’re going through similar struggles but it’s helpful to know I’m not alone. I thought things would be so different a year later but it’s still really hard. I hope we can both figure this out and be healthy and happy!
Best wishes :)
StefapooParticipantStefapoo July 11, 2016 at 10:26 pm #15066
Just thought I’d find a good spot on one of these forums to plant myself and let everyone know I’m new here. I’ve been coming to this website for a while now and finally took the plunge to sign up. I’m glad I did! I’m 29, I’ve been gluten-free for 3 weeks today. I’m also lactose intolerant and I have IBS — so much fun! I don’t trust my stomach still, so I don’t leave the house much. I’m so glad I figured out what was wrong with me because it really affected me as I got to the point where I couldn’t leave the house unless I hadn’t eaten or it’d been about 4 hours after I’d eaten anything. I’m still struggling with that, but I’m trying to learn to trust my gut — literally. No Olive Oil, Soy, Dairy, Grease, Gluten — no bacon! No eggs! I’ve been dealing with this for 17 years.
I read that Celiac Disease is genetic. Please, anyone, correct me if I’m wrong. I’m still learning about everything. My Mom was diagnosed with Colon Cancer in 2010. She’s always had bathroom-related issues (the opposite of my liquid issues) and said she never could go to the bathroom normal. Her entire life she was stopped up. She got rid of the Cancer through surgery, but it came back in 2014. This “bout” of Cancer she has now is inoperable. She did radiation and is considered to be in remission. Now we’re thinking she was Celiac this entire time, and we weren’t shocked when we read that a symptom of Celiac (if left untreated) is Cancer. So, needless to say, I got my Mom to go Gluten-Free as well. I wish all the Doctors both she and I had seen over the years (her longer than myself, obviously) would have been able to tell a whole lot sooner. It’s also highly possible that this is completely unrelated, but my Mom doesn’t think it is. Of course, I’m not trying to scare anyone so please don’t take it that way. Just merely sharing my story.
I’m so glad to know I’m not alone and I’ve really enjoyed reading all of your stories. I feel for all of you so much in every aspect of this hell.
Kaycommander July 11, 2016 at 11:08 pm #15067
Hi! I’m Kayli and I started this topic almost a year ago. I’ll be officially diagnosed for a year in August but I’ve been struggling undiagnosed for years. I’m so sorry to hear about your mom and recent struggles. I started this topic to connect with fellow Celiacs. I’m far from an expert but I’d be happy to share the knowledge I’ve learned along the way. If you would like to connect outside of this forum or have any questions, just let me know :).
HarleyPParticipantHarleyP February 12, 2017 at 8:19 pm #15882
Does anybody have Celiac parents or have it run in their families? I dont and everyone finds it hard to believe that I actually have this even though i had the blood test and edoscopic biopsies.
Maybe when im like 60 their will be a cure and i will drink a guinness and have a bowl of mini wheats and a twinkie for dessert.
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