Just diagnosed with celiac and struggling with how to cope on your new journey? Eating gluten-free but still feeling like crap? Worried about what the future will bring? We’ve all been there. That’s the main reason I started this blog in 2011. Because I wasn’t feeling better. I wasn’t happy with my celiac life. I had to make a change.
Thankfully I did and never looked back. But it’s not just me. Many of us in the celiac community have come to terms with how to cope best with our disease.
I asked the celiac community the following question: What advice would you give to the newly diagnosed or those who are struggling? Not necessarily what foods to avoid because anybody can look that up. But what have YOU learned from living with celiac disease that you wish you knew when you were first diagnosed?
Here is some of the spot-on advice they offered:
- From day one, your illness will be trivialized. From the doctors who diagnose you, who can make it seem that going gluten free is the easiest thing in the world, to anyone you speak to who tell you “there are so many gluten free things on menus now, there’s never been a better time to do it” (like it was a choice), to the waiters that roll their eyes at you. Rise above it.
- It is surprising and alarming how many food professionals have absolutely no idea what they are putting in to their food.
- Some symptoms will lift immediately. For me, the migraines (which I didn’t realize were related until after they stopped), the extreme bloating and pain ceased very quickly. Others will take awhile. Be gentle. Know that your body will take a while to recover and that is OK.
- A lot of people go “Gluten Free” for weight and diet reasons. You very well could gain weight. I personally have been severely underweight for a long time. I gained 7.5 kilograms (16.5 pounds) when I stopped eating gluten. Roughly 15% of my body weight. Even though I was now eating a lot less, my body had not been absorbing what I had been eating. Weight gain was a very unexpected side effect!
- There will be a break down of some or many of your relationships. This illness can be debilitating and socially ostracizing. Either you will tire of the people who tell you how they eat gluten free for “health reasons” and its SOOOO easy, or they will tire of you, because you are now a “burden” at social engagements.
- You will spend a lot of time apologizing for your illness. Over time you will stop doing this, but particularly in the beginning you will feel like a burden. Sometimes its easier not to eat than it is to “cause a fuss”. If any one makes you feel like this – it’s easier to remove them from your life than it was to remove gluten so feel free to do that.
- Research has indicated that there are significantly higher levels of depression and anxiety among those with Celiac Disease, in particular young adults. Celiac disease is 24 hours a day, with no end in sight. Most days it is OK, and you get used to it, but you cannot switch it off, you are constantly in a state of high alert, because anything that you put in your mouth can make you sick. More knowledge and awareness and comfort will lesson this, but it will never go away. Do not let it consume you.
- Check the ingredients of EVERYTHING. Gluten is a filler and hides in the most unexpected places. Some recent places that I have found it – Oral Contraceptive pill, Cold and Flu Tablets, and other medicines. Again – ignorance from medical professionals mean that you can and will still be prescribed tablets that contain gluten. Always always always double check.
- You WILL start to feel better. Your eyes will become clearer, the fog that you felt in your mind will lift, the migraines will end, the pain will end, any nutritional deficiencies you had will even out.
- There is something empowering about knowing that you don’t have to take medication, and you can (to a large extent) control this illness.
- While you will lose some relationships, you will gain others. You will gain a new appreciation for people who have a basic respect and thoughtfulness for you, and the little things will become big things.
- There will be some long days, and hard weeks that turn into months, but you will discover a strength you didn’t realize you had, and instead of feeling isolated, and isolating yourself, you will search deep into your own soul and the values of those around you, and surround yourself with people who make you feel exactly how you should – that celiac can suck, but it is not your fault, you are not a burden and you are not alone.
- Knowledge is POWER especially with this disease. I was diagnosed 6 years ago and I can say with 100% certainty that it does in fact get easier and better every single day.
- Attitude is everything in this journey and there’s no other way to say it. Keep your chin up, don’t apologize for having a disease that is out of your control and find new foods you enjoy that are also healthy for you.
- Stay away from the processed foods as much as possible. Fresh fruits and vegetables, meats, cheeses, wine, etc. are all gluten free and fantastic! Keep it simple and learn to enjoy whole foods.
- You will link so many different problems to Celiac that arise. Issues that you thought were separate and just how your body works… good chance they’re part of the effects of the disease. I thought Celiac was mostly my dermatitis herpetiformus… turns out it’s linked with fatigue, nerve and mood issues, insomnia, cramping, bloating, etc.
- It’s a learning curve. Take it slowly and build on your knowledge base. You will make mistakes, and they will be painful. You learn from them though and move forward until it’s second nature.
- It is so important to be your own advocate. If you think something is wrong, FIGHT for your doctors to hear you. I was almost not diagnosed because of my doctors. If your doctor isn’t listening to you, it’s time to find a new doctor.
- Life goes on, but gluten stays behind – You are going to feel angry, frustrated, and nervous after finding out you now can’t eat some of your favorite foods, and while you may think “life as you knew it is over,” you need to change your mindset and focus on what you CAN eat verses what you no longer can. It will make a huge difference.
- It takes TIME – Nothing comes easy or fast, and you’ll realize that with this diagnosis. Patience is probably the hardest part because you just want to feel better NOW. Take it one step at a time, and know that things will start to become second-nature to you quicker than you thought!
- If you don’t love cooking, learn to love it. Start experimenting with different ways to prepare foods that are very tasty to you. Also, don’t take any food for granted. I made a lot of mistakes along the way eating foods that would normally be gluten-free but were not. Above all, be kind to yourself when you mess up and get sick. It happens to all of us.
- So many different symptoms with this disease, and sometimes, no matter how hard you try to do everything right, in the end, it is your acceptance that maybe you won’t have perfect health with this disease which will help you the most.
- My contribution is to give yourself permission to grieve – the loss of your life as you now know it, the uphill battle with friends and family to come (“No, Grandma, I can’t use the same tub of butter”), the radical changes coming your way (no more picking up Chinese takeout when you’re too tired to cook). If you try to repress it at the beginning, you’ll wind up standing in the middle of the grocery store, bawling your eyes out because you’ve just read a label and realized you can’t have one of your favorite foods anymore. But it’s just as important to move on from grieving – the radical changes coming your way DO include feeling better, knowing who your true friends are, and learning about lots of delicious food you might not ever have looked into (quinoa, anyone?)
- It may feel like your entire life revolves around food and eating safely. It may actually be true. Those with other illnesses/diseases have a heightened awareness about what makes them ill. Paying close attention to what you eat is no different. Think of it as saving your own life…your new mission.
- Advanced planning is part of your life now (as much as food is). Being spontaneous may be difficult but being healthy and having quality of life is so much better. Take a few minutes to pre-plan and everything else will fall into place.
- ALWAYS HAVE SAFE FOOD WITH YOU!!! Always. If there’s an emergency you need to be able to eat safely.
- Learn how to say “thanks, but no thanks” to the well-meaning person who insisted they made you a special gluten-free dish for the potluck. If you know they understand cross-contamination, it’s one thing, but for me the risk of getting glutened is so great.
- My advice is prepare for peer pressure. I don’t mean stress about it. Just prepare yourself. Plan what you are going to do or say at the next company potluck when a coworker wants you to try his or her dish and even though they say its gluten-free, you watched three other people cross-contaminate the dish with the wrong spoon. Be ready for the next family dinner when Aunt Sally insinuates that a little gluten won’t hurt anybody. From interactions to people close to you to complete strangers, have a plan. Write a list of things you can say. Keep your reasons short, polite, and to the point.
- LEARN TO COOK! You just have to. It’s not that bad. And yes, you have the time.
- Know that a lot of the time you will feel like it’s unfair. It is unfair that there are people who can be carefree and just walk into any restaurant and eat and you can’t. But try to remember there are people who have it way worse than you. You can cure your body with just food!
- At the risk of sounding like I am trying to get on Gluten Dude’s good side…the first thing I tell anyone newly diagnosed is GO TO THE GLUTEN DUDE website and meet your people!! I have told GD this but this website was a huge blessing and source of strength to me. The people here are amazing and made my life so much better. (Dude note: I have a good side?)
- There’s a withdrawal. And it sucks. I’m pretty sure it feels just like going off sugar or caffeine. I felt restless, confused, I ate twice as much as usual for a week and never felt satisfied. Still, cold turkey is the way to go. “Easing” into the gluten-free lifestyle is only delaying the time you will feel better.
- You will find there are a lot of people spreading rumors, selling dubious products and tests, and just plain nonsensical “information” out there. You need to have a good dose of common sense, a basic understanding of anatomy, a basic understanding of cooking, and the ability to look for reliable scientific or medical information. Don’t believe someone with a slick website calling themself a “gluten free XYZ” or a “doctor of gluten” or some other made up credential.
- While it isn’t a great thing to have this disease, having it will open your eyes as to what really is and isn’t good for you, as well as teach you to be your own advocate and how to take care of you.
- You’ll learn how to become a good advocate for yourself. It’s hard – it’s not something that comes naturally to many of us! But it’ll get easier, and know that looking out for your health isn’t being unreasonable, overly demanding, or “too needy.”
- Socializing will be trickier for a while, but don’t let your world shrink down out of fear. Sharing food is a central part of a LOT of our social moments, and it’s going to take a while for you, your family and friends to figure out a new way of navigating these times.
- Grocery stores become grief stores. So much of what is sold is completely and forever off limits. Know this, and be ready for the weirdest bouts of grocery store tears. Once when the grocery store was out of my crackers, I wept, openly. This will happen, and its ok. After a while the tear portion of the program will taper off, and the angry section will open its doors. Losing so much food is bound to fire up the emotions. It’s normal and you are totally allowed to express your feelings.
- Traveling by air and finding food either in the airport or on the plane is usually impossible. Carry your own, and more than you’d think is necessary. Supplement with chips, fresh fruits, and nuts, bought at the airport.
- Upon diagnosis, I cried, not because of the loss of all those foods I loved – I cried from sheer relief of finally knowing what my “enemy” was. The enemy had ravaged my body and nearly killed me. Focus on how good it’s going to feel to feel good!
- Stand firm in your goal to become healthy. The enemy has been exposed and it is gluten! Now go fight for your health, and stop spending so much energy on the memory of those foods that robbed you of that health!
- And finally, never forget your sense of humor! Gluten Dude is an excellent example to us all. Keep pushing forward, never give up, and laugh at yourself and the tough things in life every chance you get.
And finally, here is my biggest piece of advice. Live Your Life. Do not let celiac hold you back. It’s a bump in the road, but it’s a bump that is manageable. I promise.
Yes, you’ve got some serious adjustments to make.
Yes, your body will take some time to heal.
Yes, you will lose a little bit of freedom and spontaneity in your life.
But you know what? You’re getting your health back and that’s what matters.
There is an unbelievable amount of fear-mongering online. “You can’t have this” and “you should stay away from that”. Some of it is accurate. Some of it is complete BS. Stick with the facts.
Do not live your life afraid to do things simply because of GLUTEN. No matter what people say, it’s NOT everywhere and you CAN lead a normal life (with a few adjustments).
Take precautions. Educate yourself. Use common sense. And if in doubt, do without.
And if you have any questions about something, just ping me. I’ll set you straight.
15 thoughts on “Struggling with Celiac? 41 Ways to Live a Better Life.”
Nice list GD. One for the ladies: your “women’s problems” might well go away. (Mine did)
Congrats on the ebook, will it comes in paper book form at some point, for all us non-ebookers?
Yes this disease is lifelong. Most days are Okay as you say, but many days are still terrible 4 years in. Usually I can pinpoint what is was that made me sick. I’m still figuring out new things, like some certified gf bread, store brand ibuprofen, etc. As you get better, you realize certain things that seemed not to bother before are now making you sick. I brew my own beer and even one or two beers usually makes me feel like crap the next day, so it appears my drinking career is over. Life with celiac is a major drag, that’s for sure. I just try to remember it’s not MS, ALS, etc. It does take away a lot of fun and freedom, for sure.
Would never want ALS, but sometimes I think I’d rather have MS than CD, at least they can eat with all their friends and family and no one teases them! My friends have potlucks often and it is hard. I nearly broke down in tears at the last one. I won’t, but sometimes I just want to drive off a bridge.
I’ve thought about this a lot, since in the past 18 months I was diagnosed with both CD and MS. MS sucks, but I am treating it aggressively. You’re right – CD is constantly on my mind, affects my day-to-day and social interactions, etc much more than MS does. Wouldn’t want to pick either, but celiac disease is definitely tougher than people who don’t have it might think.
P.S. I find that I am much less emotional when I can’t eat out or at a potluck/family thing if I eat first and am not hungry!!
I am sorry you have both, that totally sucks times 1 gazillion. I have this nerve disease too, it is called erythromelagia. I also have a friend with MS. My symptoms seem sort of the same. I’d rather have the pain of EM than CD. But both make life extremely hard. Like you said, eating out, not being able to eat with others, the eye rolling . . . The patents it takes to live with this disease, is at times, way too hard. I am trying to find other joys in life, but it is hard when in pain all the time. Not pharmaceuticals have helped me. Just have to live with it. I don’t know about you, but the worst part for me is the depression I have to hide every day from every one I know.
Hang in there! Hugz
I always loved cooking but the challenge of cooking gluten-free turned out to be really fun! Been six months since my diagnosis. I would like to add on list that you can actually end up saving money because you’re doing home cooking. If you can’t go out to eat much then you’re going to want to stay at home and make your own food. And you don’t have to miss out on the foods you ate before. You can get replacement ingredients that are gluten-free and make your food from scratch. I’ve been able to duplicate several restaurant chain recipes at home. I have been able to make really great cookies and muffins and everything that I used to eat before. It’s even more of a challenge for me because I don’t just have celiac disease I am also allergic to dairy productsw, beef, and garlic. We can survive this!
I’m three years into this learing curve and have discovered I am super sensitive, and after getting glutened several times by good-intentioned people and restaurants I have decided to only eat at home. My health has improved but my social life sucks. I did not go on two trips due to not being able to eat with the teammates, and have missed business engagements for the same reason. I don’t have great solutions figured out for “mobile meals” as GF bread make horrible sandwiches. It is a 24/7 thing so it is hhard to be “normal”.
I feel your pain Gord. GF breads, is the worst 😝😖 I too have not gone on trips, but I am going to start this summer.
For short day trips, a Thermos with home made hot or cold stew/soup in it, is satisfying. GF crackers are pretty good much of the time. They are nice slathered with favorite topping (almond butter, cheese. . .). In a cooler, I bring frozen chicken, almonds, some veggies and a banana, every where I go so I will always have something.
Hope it gets better for you 🌼
Devastated by celiac disease and associated food toxicity. 2009 was the year when the public first heart about the gluten protein. Chronic explosive diarrhea following meals was too elusive for a certain diagnosis. A gastroenterologist publicized the relationship between celiac and its cross-mediators/cross-reactors: yeast, dairy, egg and coffee. Additionally, symptomology occurred with: preservatives and artificial flavoring. Through trial & error, I discovered other foodstuffs that create a toxic effect: flower and seed oils. Research of the oil extraction processed revealed that extreme heat and chemicals creates toxins. This too contributed to the GI effect. Long term & repeated exposures resulted in malnutrition and neurological disturbances to the point of Near Death by Gluten. Hybridization of wheat has occurred since the 1950’s. Chemical analysis revealed the gluten ratio has increased by 17 times since 1960. Six slices of today’s wheat bread have the gluten equivalent of 102 slices of the 1960’s version. There is no reversal of this disease. There is no hope.
I don’t understand why so many of the suggestions have the feeling that they came from Debbie Downer. So my best suggestion is to get a change in attitude. Don’t look at this as loss. Look at it as opportunity. Opportunity to improve your health. Opportunity to be an advocate for yourself. Opportunity to learn. Opportunity to discover new foods and cooking techniques. Opportunity to find a new restaurant – a new pizza place opened just prior to the pandemic in our neighborhood. They have the best pizza ever – gluten full or gluten free! Opportunity to find out who your real friends are. Opportunity to make new friends. Opportunity to become self-sufficient.
Another thing to keep in mind too is that some symptoms can be signs of many different conditions. While gluten may still be the culprit for continued symptoms, it could very well be something entirely unrelated. Make sure to keep in touch with your doctor in case he/she may want to test you for something else. Google (or your favorite search engine) can be a great resource to help you figure out things as long as you use good judgment and discernment.
Even if you never cooked before, you will probably now try to cook for the first time. Take it easy. It’s a lot to take in all at once. Maybe get a bread machine, and consider getting the exact flour that you see in the youtube video you’re probably watching. Flour mixes are not interchangeable. At least not at first. Home made bread still beats store bought. But homemade GF bread is harder to make. So keep calm and keep expectations low until you hit on a winning combination. And you will, I promise.
Another suggestion for making social engagements easier is to plan to have a special treat when you get home. If I know I am going to struggle with the food at an event, I have a treat ready that I can look forward to when I get home. I have a sweet tooth so for me, it is usually a baked good like flourless chocolate cake, which btw is extremely easy to make. Also, don’t over-rely on alcohol. I have made the mistake a couple of times to drink too much wine when I could not eat the food at an event. Also, as others have said, make sure you have food with you so you are not tempted to eat unsafe food at an event.
Also agree with previous posters that attitude is so important. Social engagements are by far the hardest aspect of celiac so have a plan and let the rest go. You can do it!!
“Another suggestion for making social engagements easier is to plan to have a special treat when you get home.”