I love your emails. I love them so much that I will never delete them without answering every one of them. Then life happens and all of the sudden I’ve got gobs of emails to go through. And like anything else that over-accumulates, the task to get through them becomes overwhelming.
Well…darn it…I’m overwhelmed no more (not really…but that’s what I keep telling myself). My goal is to answer at least one email per day until my inbox is clean. And if an email seems like it would be extremely beneficial to the community, or if it’s entertaining, I will answer it as a blog post.
Which us brings us to today’s email. It reads as follows:
I was diagnosed with Celiac this summer, a week before my 24th birthday. It was supposed to be my “golden birthday”, turning 24 on the 24th. Instead, it was essentially another day of people cracking jokes at my expense – “oh I added extra gluten to my burrito today” and crap like that.
I’m struggling with how to find a balance in my social life. I want to still see people, but I feel like they get tired of me talking about CD constantly. I also live in a very small community with very limited resources, and I feel like my world is just shrinking smaller and smaller. I already struggle with anxiety and depression. My husband tries so hard to understand what I am going through but he has no context in his own life.
I guess I’m asking, when does it get better? When do I get to not live in fear of food? I know my life is changed forever, but everyone, my family included, seems to think this is just a phase. How do I get my bearings back?
Thank you.
Just a phenomenal email. I think most of us have been in dark places at some point with our disease. I’ll share how I got out of mine and hopefully you all can pipe in and share your journeys as well. You’ll not only be helping this lovely person, but I’m sure many more as well.
First, I’d like you to read my five-part series on How to Go Gluten-Free. It touches on my experiences after diagnosis and gives specific advice on how to handle the transition. I think the two most important factors in the transition are your attitude and your support system.
Without acceptance that this is your new journey, it will be tough to get over that hump.
Without the desire to WANT to feel better, gluten-free will always be a challenge.
And without those closest to you getting on board, you will always have that tension in your life. A tension that will make it even more difficult for your body to heal. I’m a huge believer that stress plays a vital role in our physical well-being. Life itself is stressful enough. Try not to surround yourself with people who make it more so.
I have a whole section on this site about dealing with relationships. Please pick the most applicable posts and send the links to your husband and your family so they know that this is not just a phase. This is your life. And celiac disease does not define you. It’s just now a part of who you are.
I wish you the best and please keep in touch with me.
GD
#NoCureNoChoice
And I’m damned if I do and I’m damned if I don’t
So here’s to drinks in the dark at the end of my road
And I’m ready to suffer and I’m ready to hope
It’s a shot in the dark aimed right at my throat
– Shake it Out, Florence + the Machine
It took me about six months to feel like I came out of the tunnel, both physically and emotionally. Six months to learn which foods I liked and didn’t like, and six months for my immediate family (my husband especially) to wrap their minds around it. My husband is in the same boat yours is. It helped to share articles with him. He’s not much of a book reader, but he would read articles I left on the table. I covered the facts with him, so at least logically he understood.
It took me a while to get used to eating a different food. One thing we did was make all the “core” components of our meals (meat, casseroles, etc) gluten free, then we each ate our own sides (veggies, salads, desserts, etc). It felt a little weird at first, but after a while, we forgot it was different.
At restaurants, I hate the attention having the CD conversation causes. So I call ahead and walk through the menu so I know what to do. Then I mention the manager’s name so they understand this is more than just ahead whim. I tend to get there faster with minimal extra attention.
Hang in there. It’s hard, but it does get better. For a while, it needs to be your complete focus, because you’re learning and healing. That’s ok and it’s the right thing for you right now. Give yourself that time. You deserve it. Then you’ll find CD weaves itself more naturally into your life and it’s not so all-consuming, but more of a consideration. Just like when you were little and learning to safely cross the street… it was a total-focus thing with a lot of energy and effort. As you learned and figured it out, it’s just something you naturally do. Not even something you think a lot about, just something you automatically check before you cross the street.
You’ll get there… in the meanwhile, we’re all here to help when you need it. Best wishes!
Celiac’s everywhere can relate to this feeling out of place, like your world has gotten smaller. I felt so depressed and hopeless about being gluten free for the first few years I was diagnosed. It takes some people a long time to come to grasps with it, but there were things that helped me a lot in the journey. First of all, Knowledge IS Power. The more you know what you can and cannot eat, where you can go, what you can have, then you’re going to do fine. Secondly, Attitude about it is everything. Having a positive attitude about your health and your new diet is imperative. You have to take control of this and make it your own. This is a blessing in disguise, because many people (myself included) have to wait much longer to get a diagnosis and then the physical, emotional, mental and financial repercussions of being misdiagnosed for so many years robs you of life. It took 20 years of my adult life for the doctors to get me the right diagnosis. I would have given anything to know what was wrong at 24 years old. I know it’s hard, but please try to see the silver lining in this. I wish you well and trust that with time, this does get easier.
Great advice. I’m a very social person and at first being Celiac put a damper on things. Then I realized that I could still go out and socialize but pre planning is the best. A lot of times I will eat before I go out with friends because I’ve switched the focus of a social event from the food to the people. My friends have gotten used to me not eating with them because of CD. Yes, there are sometimes still jokes about “I will take her extra gluten” but it’s typically from either a) my close friends who I know love me and it’s a way we communicate or b) someone who will never get it and will always be a jerk about it. You learn to accept and move on and enjoy a social event! It does get easier. Take it one day at a time.
This comment was so helpful! I was diagnosed over a month ago and the hardest part has been the restrictions on hanging out with people. It seems like every social gathering is centered around food, most of it I shouldn’t have. I will most definitely be taking your advice about switching the focus from the food to the people. Hopefully, if I stick with it, my friends and family will get used to the changes. I may lose a little spontaneity, but that is nothing compared to gaining so much more health.
First off, congratulations on your diagnosis, writer. It’s your key to good health, and you’re so lucky to have found out this early in life! Many of us wait until we’re over 40 and falling apart. Second, you’re lucky to have a husband already, because trying to meet people in our culture of dinner and drinks is really hard! Look on the bright side, you’ve got a good foundation. It will get better.
Your husband needs to accept that you need to be safe in your own home, so the best thing for him to do is be gluten free when he’s at home. Beer is fine, but anything that can leave a crumb should be banished from your home. Your first step is getting him to be your back up – this will help fortify you for the inevitable family nonsense when you go visiting.
Expect your family to resist. Even if you explain to them they’re at risk and should be tested, too, they won’t want to. The more you show how hard it is for you to live gluten free (and it is!) the more they will resist, because who really wants this? None of us!
Do not take their jokes. Put your foot down and tell them DON’T TREAD ON ME! If they love you, which they do, they’ll keep their comments to themselves and begrudgingly go along with your requests. Expect all sorts of stupid questions like, “you can eat potatoes?” because they may not bother to educate themselves. It’s OK.
You will get really good at cooking, and you’ll find great, creative recipes. Your husband should learn how to cook too, because going out to eat is not going to be all that much fun. So if you both share the cooking it will seem less of a burden. It’s fun to cook together, too! Make it your new hobby. Experiment with whole, unprocessed foods. Find a week’s worth of easy to make, delicious dishes to be your repetoire of go-to dinners so when you’re tired and starving, you can easily whip something together.
Do not count on store-bought packaged gluten free items.
Get good at keeping leftovers. Buy a rice cooker, a pressure cooker and a wok. Stir fry, stews and soups will be your new friends.
Think of this diagnosis of an opportunity to explore new, better food. So often Americans rely on crappy pizza, beer, sandwiches. It’s so lazy. There are endless possibilities in recipes from around the globe that are delicious and naturally gluten free. Experiment! Keep it fun!!!
And, learn to pre-eat so when you go out with friends you can sip wine and enjoy their company while they dine. You will learn you can’t trust most restaurants because their standards of ‘gluten free’ are not good enough for celiac folks.
Give yourself time to mourn. Be patient with yourself. You will make mistakes, you will be OK. Commit yourself fully to the gluten-free life, know that it will be a challenge, but be confident you can do it. We’ve got your back.
Good luck!
Dear Lovely Person
Great advice from GDude and the 4 lovely ladies above. I’ll focus on Dude’s “not just a phase. This is your life. And celiac disease does not define you. It’s just now a part of who you are” and from another man’s perspective.
I’ve been told on many occasions that I’m “delusionally optimistic”; however, in accordance with Dude’s great words above, I always accept whatever comes my way as part of who I am. I work through, change and overcome what I can and I adapt and move on with what I can’t. CD has definitely been the latter challenge, which has attempted to dominate my life the last 5 yrs with 3 types of related cancers and now 5 retina surgeries all from undiagnosed CD and it’s unfortunate consequences. So I agree wholeheartedly with dear CD above and that your DX at 24 is a blessing in disguise to celebrate and run with in joy.
The process most definitely gets easier over time. You also have a new group of friends who understand and support you like no others because we’re all in the same boat together. I’m also grateful for my “Internets friends” and all I’ve learned from them, who I’d never have met but for CD.
Life can always be better but it can always be worse so I just stay happier in whichever season I am. I expect your husband is like me. I tell my wife after 30 yrs that I’m sure she can always find another guy better looking and/or with more money but she’ll never find a guy who loves her more. Thankfully my wife has trudged through all of my CD caused health issues and our always strong marriage is even stronger than before. I understand others in our CD boat haven’t been as fortunate and with whom I am most sympathetic. Best hopes and wishes for you and your family to become more than conquerors over CD as part of just who you now are in your journey!
In addition to pre-eating, always carry Kind bars, or something like that. I can’t count the number of times I have gone to weddings, bar mitzvahs, and had NOTHING to eat. Good luck! It gets better, you adjust. Just ignore the dopes who want your extra gluten. Let it roll off your back.
This disease is hard enough without other people! At work I was expected to chip in to buy cakes for people’s birthdays, and many times I was asked to bake one because no one else baked. When it came to my birthday, they told me I ate “too weird”, and they had no idea how to accommodate me! This double standard blew me away because I lived in the Twin Cities where there were a lot of things available, even in the late 90’s. The day after my birthday, they asked me to bake a cake for someone else! After that, one of the marketing people brought me a cake from Whole Foods, which was a late but lovely gesture. Her family had a newly diagnosed member, so she got it, and she was irritated with the prevailing attitude. The irony was that we all worked for a natural foods distributor, but they still didn’t understand it. Family members are just as perplexing. My mother consistently told me if I couldn’t eat bread I should eat toast, which always cracked me up. My son in law whom I love like my own, finds the concept to be hilarious. He is fond of eating desserts and saying, “Mmmm, gluten”, and then laughing maniacally. These same people, friends and family, would never dream of mocking someone with cancer or another disease, and would not be so ignorant and insensitive either. Somehow Celiac Disease is not a real disease to them. It is just people being silly and not eating foods on a whim. I am irritated beyond measure by people seeing this as a diet and not a way of living. Thanks a lot Hollywood celebrities, for making this even more unserious to those who do not have Celiac or gluten sensitivity. I am allergic to most grains and grasses, but I call it Celiac Disease, because even if people don’t understand it, they have at least heard of it. The longer I am away from grains and dairy, the more serious the reaction is. This is why I won’t eat at most people’s homes, and this is why I increasingly mistrust restaurants and fast food chains. I have been almost glutened three times at Chik-Fil-A, and was glutened twice at Red Robin. Outback has been consistently careful and takes it seriously, but so many places don’t, so it’s safer to either not go to most places. It really is frustrating when someone has a gluten free menu, but the staff isn’t trained properly. This is why the Cheerios thing has me so annoyed. They just don’t really get it at all. So thanks but no thanks. I will bake my own baked goods and keep myself healthy, and I will be glad that I can tolerate gluten free oats, buckwheat, sorghum, rice and nut flours, and some starches. But I will not give another cent to anyone who doesn’t take this seriously. We have family coming for Thanksgiving, which means the gluten free toaster will be hidden in the closet. I had to throw out two toasters and a waffle iron already! If they only became half as careful as I have to be, it would be a huge improvement. But I would probably still have to hide the toaster!
Wow, sorry about that rant I just posted. I had no idea that was all going to come out! Things do get better, and they get easier. There are a lot of great products to buy, there are wonderful gluten free, low carb, and Paleo websites and cookbooks, and you can make lots of great things yourself, if you like to bake. The people that do get what Celiac and gluten sensitivity is about, really do get it. My husband and son voluntarily made this a gluten free home, and they know enough to brush their teeth and wash their hands if they have eaten gluten outside the house. The others probably will never get it, but there are ways around them too. Just be careful and be vigilant. You always have to watch out for you, but there will be someone else that understands. There are support groups and wonderful websites, and they will make things a lot easier for you. A lot of mainstream grocers and retailers are carrying gluten free items. Surprisingly, Aldi’s has a great selection of things. I buy bread and tortillas there regularly, and periodically they have specials and bring in crackers and treats. My husband and son love their bread, and go through two loaves a week. Walmart has a ton of things that you can order online, even if they don’t carry them in the stores. I have never made it through their product list, it is that long. They are way cheaper than Amazon, whose prices on food items are absolutely insane. I have also used rice flours from Asian grocers without problems. At a dollar a pound, it is way more reasonable than name brands. That has worked for me. You will eventually find what works for you, and what you are comfortable with. Good luck! Before you know it, this confusing initial phase will pass. With acceptance comes freedom and knowledge, and those two things will take you a long way.
I have a suggestion for the newly diagnosed. I started telling people the truth. My body recognizes gluten as poison for some reason. Thus, when you feed me gluten, you are poisoning me. Suddenly, people stopped being quite so glib about it and saw it as a real problem. For some people, it took a bit more explaining that we don’t know why it happens, but for some reason it does and every time i eat it my body attacks it, but it doesn’t recognize it until it’s in my digestive tract and being absorbed. AS a result, it destroys my digestive tract and my body begins to be malnourished because it can’t work right when it’s being destroyed. Now, when I go to people’s houses, they tell me that they checked and the food they are feeding me “isn’t going to poison” me. Somehow, that little change from “I can’t” to “poison” made it so much clearer to people that this is serious and I’m not just being picky. It helped.
Also, after diagnosis, it helped when I shifted my thinking from “look at all the things I can’t eat” to “look at all the stuff I can eat”. Yeah, I still have my moments of “I would really just love to go out and get a pizza”, but they are much further apart than I thought they would be. Getting into a support group also helps, whether online or in person. It helps relieve that feeling of being all alone with this death sentence hanging over your head if you eat the wrong thing. 🙂
^ This blog post here is kind of why I think so highly of Gluten Dude! He is always there to lift somebody up when they are down.
I was diagnosed 3 years ago, and though some of it has gotten easier, a lot of it will always be hard.
If people are joking with you and you are laughing along, that’s fine. If people are making fun of you and hurting your feelings, tell them to f*ck off. Your journey is hard enough without people piling on with stupidity. (Sorry about the f*ck, GD. There’s just no better way to say that.)
You take care of yourself and do what’s best for you. Surround yourself with people who love you and provide a positive influence on your life. Educate yourself as much as you can about Celiac, and live your life. Eat whole foods and limit the things labeled “Gluten Free” for your best chance at healing and staying healthy.
You’ve got this!!
My story is a little different to start with, I don’t have medical insurance, so I’ve never been diagnosed. I was told in my 30’s I was lactose intolerant, so I didn’t have milk products for about 10 years even though the symptoms didn’t really dissipate. One day while reading an article about health, I realized the symptoms I was reading were all various things I had problems with. Since I was a teenager, my stomach always hurt and I couldn’t wear a belt or anything close to tight around my belly; bloated all the time. Also, migraines, achy joints, so tired all the time, brain fog, anger issues, sick a lot. So this article I was reading, described many of the things I was going through, and some of them for most of my life, I was 45 at the time. In March of 2013, I went gluten free. I threw away everything out of my cupboards that had a hint of gluten in it. I went on a meat and produce only diet to start and started adding things; including milk products. I have not had one single migraine since, slowly everything else started to go away also. I live in an extremely small community, but my friends are super supportive, I’m not married and my kids have moved on. There are people who make fun, but I’m a jokester anyway so I just kid right back. The things I care about, not being able to make my gramma’s homemade rolls or the taste of real bread or real pasta, or flour tortillas, the smell of the bakery as I’m grocery shopping, can make me cry. But I get over it, I know that any of those things, one bite, can put me down sick for at least one full day. Last Thanksgiving, I went to a friends house and I had made a deal with myself, nothing with gluten, but I lost that fight with myself, I was sick for three days, I knew it was wrong and I hadn’t realized how sick it would make me, I’ll never do that again. I never eat out, I cook all my own food, I eat before meeting friends and I always keep a snack in my purse, just in case.Every day now, I am thankful for being able to hike, read, work, play with my dog and cats, and nothing is a fog anymore, I am not in constant pain anymore, I am so very grateful. I wish you the very best and know you are not alone.
For me the first 6 months it was all consuming of my time and or attention…shopping, cooking, holidays, traveling. After that it has steadily gotten better. My husband wasn’t a true believer at first. He even mentioned once that he wondered what would happen if he just slipped me some gluten without my knowledge. I freaked and he never did try that, lol. A year in I felt pretty comfortable but still dreaded holidays and gatherings, but it wasn’t an all-consuming thought process anymore. I’m now almost four years into gluten free and I have slowly weeded out the areas of cross-contamination it took me forever to fully understand and I’m truly happy. I’ve been happy for the last two years because I finally found all the things that would still bother me. I have adjusted to the restrictions of eating out and most of my family and friends are supportive now that they realize I was serious….that I wasn’t going through a fad of some sort. I bring my own at holidays and quite frankly, I like mine better now. I can rest easy and enjoy the company without fear of running to a bathroom or having heart palpitations so I no longer mind the change in diet. I mourned the loss on and off for about two years….increasingly less and less and now feel free. I still get a random craving once in awhile because I’m human, but it no longer makes me sad. You’ll get there. Keep trudging on. Let yourself feel your sadness/anger/frustration and then make a plan for each situation. Habits take awhile to establish and before you know it, it will all be second nature. I bet your family will finally realize that you are serious. If not, forget them. They are being disrespectful.
When does it get better? One way it’s gotten better for me is that I’ve changed my attitude about eating out– my wife and I used to eat out a lot, but now I don’t look forward to that anymore. Sure, I miss trying new things and eating old favorites. But I realize that I’m going to be apprehensive about the experience instead of looking forward happily to it. And that’s just the way it is. So it’s necessary to get through the stages of grief and find acceptance.
Another way it has gotten better is as I’ve read more and experimented more with baking things like bread and pizza. I’m still experimenting with ingredients for pizza dough, but what I’m making now is good enough that my non-celiac wife happily eats it. And it will get better. There is satisfaction in learning how to do something well, and I hope to get to that point before too long.
It’s gotten better as I’ve adapted more and more to reality. We travel a lot, and the idea of eating out in different places breakfast, lunch, and dinner for many days in a row is not at all attractive. So we’ve gone more to cruises as a travel mode. We’ve always liked being on the water, and the four cruises we’ve been on since I had to go GF have all taken care of me quite well. There’s some apprehension at first, but if they don’t poison me for a couple of days, I can relax and enjoy (while remaining vigilant, of course). We’re also considering all-inclusive resorts and/or doing Gluten Dude’s thing of renting a place in a vacation spot and getting a private chef. Of course, if you can find a totally gluten free restaurant like the Senza Gluten the Dude has talked about recently, that’s great. I’ve had a couple of such experiences and the feeling of carefree normalcy I experienced couldn’t be beat.
Of course, at first when I went GF I spent a lot of time reading up on living GF, and it was on my mind all the time. But it’s only interesting to other people for a short time; then their eyes glaze over. I have to remind myself not to talk about my problem all the time. Politics may not be a safe topic in many situations, but it’s not as boring to other people as my celiac disease.
I’m fortunate to live in a suburban area with several local markets that carry good stocks of basic GF ingredients. But as I’ve experimented more and more, I find that online sources like Amazon, Vitacost, and Montana Gluten Free (to name just three of the many, many online food sources) give me access to pretty much anything I might need in the way of ingredients. Also lots of things I’d never heard of that are fun to try. And once you find things you like and will continue using, bulk orders can save money.
It’s certainly gotten better for me, and it will for you too. It does take time, though.
It’s reading comments like those above that make me so proud of the Celiac community. Welcome, young 24yr. old, to a group of VERY caring people. Such great advice already given, not a lot more to add but that you are “safe” and all will be well. I’ve been on this journey for a mere 5 years and am so glad that I didn’t have to “reinvent the wheel” upon my diagnosis. Blogs, websites,encouragement, shoulders to cry on, gluten free food providers and mail order companies, recipes for anything your heart desires can be found on the great world wide web. What a blessing! Do not feel like you are experiencing something that no one else can possibly understand. Gluten Dude and the Celiac community has your back!