ADJUSTING TO A GLUTEN-FREE LIFESTYLE
Just Diagnosed: The Early Days
While the reaction to a diagnosis is likely to be as individual as each of us are, a diagnosis of celiac disease or gluten intolerance is likely to be overwhelming -- an often profoundly, can’t-get-out-of-bed-this-morning, kind of overwhelmed.
It’s understandable.
The prospect of having to literally watch everything you eat and drink 24/7 and to no longer be able to eat your favorite foods for the rest of your life is usually accompanied by a profound sense of loss -- provoking anger, anxiety, denial, depression and/or frustration.
Compounding these feelings, once you start a gluten-free diet, your symptoms are not likely to disappear overnight. In fact, you may feel worse before you start to feel better.
The time frame until you start to feel better depends on the nature, severity, and duration of symptoms prior to diagnosis. It is also impacted by the number of additional conditions you have that may complicate the process.
On the other side, by eating gluten-free, you will eventually get rid of the symptoms that drove you to seek help in the first place. As a bonus, you are less likely to get gluten ataxia: a lack of muscle coordination which may affect speech, picking things up and other voluntary movements. Your longevity will not be decreased because of this health condition.
Life Is A New Normal
The reality is that by starting treatment you are entering a new normal.
You’ve been given a diagnosis to stop the misery that sent you to seek help in the first place -- and a treatment that doesn’t involve infusions, surgery, hospitals or the like. The treatment for your health condition is classically simple: a new normal in which you eat and drink gluten-free.
Not many years ago, the treatment would have been very constraining. There were very few gluten-free choices available. Today, with all of the choices now available, and new choices constantly coming to market, you’ll likely be able to eat most foods you have been eating – just with substitute ingredients when necessary and with more care about where you eat.
You will lose some spontaneity because of the need to plan ahead, but even that will get easier over time.
Luckily for us, we humans are very adaptable.
How To Start Adjusting To A Gluten-Free Lifestyle
The following advice for starting to adjust to a gluten-free lifestyle comes from discussions with a variety of leading celiac advocates:
Stay away from any type of bread for a while before eating gluten-free bread. Some people suggest staying away for as long as 2 to 3 months because a distant memory of taste and texture of bread with gluten can make it easier to transition to gluten-free bread.
If you have gastrointestinal symptoms, consider sticking to easily digestible foods. Fresh juice, with fiber, may be difficult to digest.
For now, stay away from processed foods rather than worry about whether one of the additives contains gluten.
Keep a supply of healthy, good tasting goods at home. It will make the other challenges easier, always knowing that you have a safe haven if needed. (Likewise, always keep a healthy snack with you “just in case.”)
If you start to miss food with gluten, think of the consequences. The thought makes gluten-free easier.
Connecting with other people who have celiac sensitivities can help overcome a feeling of helplessness. So will helping other people.
Consider taking some time to mourn. Erica Dermer, author of Celiac and the Beast, recommends keeping in mind that you are likely to go through the five stages of grief put forward by Elizabeth Kubler Ross:
Denial: Denying that you have a disease
Anger (but not at your parents for giving you a gene if you have celiac disease)
Bargaining – what if you just cut back on gluten? (It won’t work)
Depression
Acceptance – yes, it is a struggle. But it does become easier.
How To Live In A New Normal
First, and foremost, be patient with yourself. Transitioning to a gluten-free diet is a learning curve.
A gluten-free lifestyle does not mean that you must give up your regular diet or favorite type of foods. It may take some creativity, and there may be challenging moments, but you can eat just about any meal. There is no reason that gluten-free has to be flavor free.
Keep in mind that when starting a gluten-free lifestyle, removing foods from your diet will likely change your overall intake of fiber, vitamins, and other nutrients. It will also likely lead to weight gain or loss. Consult with a registered dietitian to check for existing deficiencies in your diet and to learn about a healthy gluten-free diet that suits your food sensibilities.
Your physician may have a suggestion about a registered dietitian to consider working with. If your physician doesn’t have a recommendation, reach out to other members of the community, or research on your own – likely starting online.
Think of your diagnosis as a call to arms to not only eat and live healthy, but to also be more like our namesake, Charlie Hamlen – a person who thinks about helping others and doing what is right when making a decision, instead of just what is good for you.
Do not expect to become a gluten-free expert overnight, or even during the first months. And don’t think that once you learn what you need to know now, that things won’t change. There is constantly new information, manufacturers constantly change ingredients, labeling laws change, new studies happen.
Keep in mind that planning will be an everyday part of your life. Life on a gluten-free diet is easier if you constantly plan ahead – at least for the day - and keep a snack with you at all times “just in case.”
Never let yourself get too hungry. That’s when mistakes can easily happen. Think about what to eat from your new perspective.
Keep in mind that just because a food is gluten-free, does not mean it is healthy. Gluten-free junk food is still junk food.
Think about food from a nutritional point of view. Even better: consider using the transition as an opportunity to move toward a healthier diet. There is nothing quite like a health scare to get us to change our behavior – but why wait for one? (And please do not forget exercise, proper amount of sleep etc. – you know the drill.)
Adapt what you and your family eat by looking for substitute ingredients. A great number of substitutes are readily available.
Make your kitchen gluten-free and learn how to make simple gluten-free dishes and even baked foods. Once this foundation is secure, the challenges will be much more manageable.
If you keep a supply of healthy, good tasting foods at home, you will always have a safe haven. It will make the other challenges easier, always knowing that you have a fall back if needed. (Likewise, always keep a healthy snack with you “just in case.”)
Our kitchen guide provides information about how to rethink your kitchen to make it easier to live a gluten-free life without cross-contamination from gluten containing foods. You don’t have to do everything at once. For the moment, super clean all surfaces you will use, sterilize all needed cooking pots, pans, utensils, and cutlery. Don’t use the toaster or any other appliance that could be contaminated with gluten.
Shop wisely.
Each week, make a list of a week’s worth of meals you would like to cook. Early on, it is easier to cook naturally gluten-free foods than to try to recreate something which is naturally full of gluten. A great meal doesn’t have to be complicated. For instance, consider fresh meats, poultry and fish, eggs, fruits, vegetables, rice, potatoes, milk and cheese, beans, seeds and nuts in their natural form.
Research how to make a gluten-free version of what you want to eat. In addition to cookbooks, an incredible array of recipes is available for free online.
Make a list on your mobile phone of what you need to buy at the grocery store. Read our shopping tips before you go.
Give yourself plenty of extra time when going to a store until you get used to shopping gluten-free. A standard suggestion is to leave twice the amount of time you usually spend in the store while you are getting started.
Store your gluten-free purchases separately from what is currently in your kitchen. Until your entire kitchen is gluten-free, or at least whole areas of gluten-free, keep open items in a sealed bag or container so they cannot cross-contaminate or be cross-contaminated.
Doubt
If you have the least bit of doubt about whether something you are thinking about eating is gluten-free or not: do not ingest it.
To quote advocate Jessica Hanson/Tasty Meditation: “When in doubt, do without.”
Cheating
If you have celiac disease or a wheat allergy: don’t cheat – not even once. When you think about risk and reward, it is never worth the risk.
If you have gluten intolerance, after at least a month of eating gluten free, ask your physician whether you can start a food at a time and see what happens. If your physician approves, keep track in a journal of the date, what you eat and reaction, if any. If your physician doesn’t answer questions like this, consider switching doctors. To learn how, click here.
If you aren’t sure whether you have celiac disease or gluten intolerance – it is best to err on the side of safety and don’t cheat. If you have celiac disease, even a bit of gluten would damage your system.
Family
Speak with your family or other people you live with about everyone eating gluten-free at home. It will make life much easier for everyone if everybody eats gluten-free at home.
Give family, friends, teenagers, college students and owners of restaurants you frequent that offer gluten-free food a copy of our articles written especially for them. Consider also asking that they read this article to get an idea of what you are going through now. An introduction to our Table of Contents would let them know the type of information available if needed.
If you have celiac disease, keep in mind that celiac disease is a hereditary autoimmune disease. Testing is recommended for the members of your immediate family (children, parents, brothers, sisters, first cousins, nieces and nephews, aunts and uncles, grandparents).
The good news: you won’t have to take a medication or undergo treatments for celiac disease for the rest of your life
Advice From People Who Have Been In Your Shoes
If you make a mistake, do not be hard on yourself. We are all human and mess up once in a while. Learn from your mistakes and move on. Life is short. It is our job to try to enjoy each moment – or at least to do the best we can.
Try not to let the transition to a gluten-free lifestyle keep you from doing the things you like with the people you enjoy.
Keep in mind that in time you will have created your own explanations, excuses and avoidance techniques to cope with situations that feel uncomfortable now. It may help to think about how you felt when you started anything new that was important to you, and how it began to feel over time.
Celiac disease and gluten intolerance are lonely diseases. Reach out to other people who speak the same language and are creating their own answers. The internet can be very helpful.
Do not be afraid to fail. If you do go off diet, whether intentionally or not, get back on as soon as you can.
When heavy/negative thoughts come in, keep in mind that they are only thoughts. Recognize them as thoughts. Then change the subject. For additional information about how to stay positive, see Attitude.
Understand that there is a psychological effect that accompanies a restricted diet. Consider joining a support group. For information, click here.
Look for humor. A laugh a day likely never hurt anybody. In fact, laughter is good for you. For tips about getting humor in your life, click here.
Take one day at a time. If that’s difficult, then take one hour at a time. If that’s difficult: one moment at a time.
Think about what works for you as a guide by which to live your life. Other than eating gluten-free, there is no one size fits all. We are all unique.
Keep in mind that literally millions of people have the same condition you do. They get through it. You can too. It may sound Pollyanna: but there is always a silver lining. Sometimes it’s harder to find than others. Remember: you are not alone.
If you have health concerns, consult with a medical professional.
“Alternative” therapies should be considered to be complementary, not instead of.
Don’t stop learning. New products and tips are surfacing all the time – some great, some good, some to be avoided. Tap into the active online community of people who have to eat gluten-free. Just, please, only check and listen to reliable sources. There is a lot of misinformation on the web.
Find a way to reward yourself and gratify the urge to splurge without hurting yourself.
Focus on what you can eat – not what you can’t eat.
When thinking about a gluten-free diet as a treatment, keep in mind that few prescriptions are either as effective as eating gluten-free or as tasty.
Don’t let your situation define you.
TIPS
Usually, celiac disease that doesn’t improve is due to some unknown hidden source of gluten in the diet, but sometimes it’s not. It may be that you have refractory celiac disease, an additional food intolerance or some other health condition. Some people will suffer health issues throughout their lives. If symptoms don’t improve, see a gastroenterologist who specializes in celiac disease.
NOTE:
The Charlie’s Table Oasis guides of which this is a part are meant to make your gluten-free life easier. For instance, we have information about how to speak with friends, pick a restaurant, help a young person, even how to give a wedding. For an overview of our content, see our Table of Contents.
If you aren’t reaching out to other members of the community, please consider doing so. We have a variety of suggestions about how. Click here.