RELATIONSHIPS
Relationships In General
Expect love, kindness and support from people that you care about and say that they care about you.
Be open with the people who are close to you about what is going on with you and how you feel about it. We are not suggesting a motor mouth moment-by-moment update - but letting them know what is going on.
Celiac disease or gluten intolerance will not disappear if you pretend they are not there.
The reality is that sharing could be part of your healing rather than inadvertently making you worse.
It is worth keeping in mind that your health condition is not easy on the people around you. Still, they would rather know what is going on and see you feeling good than not feeling well.
Please do not expect people to understand what you are going through. It’s close to impossible to walk in someone else’s shoes. Keep in mind that they love and care about you – and are doing their best.
People will mess up. Mistakes will happen. When you feel like lashing out at someone, or call them out for putting you at risk, imagine a stop sign in your brain. Take a moment. Yes, express what is on your mind - but considerately. It’s a shopworn phrase, but honey does get better results.
It helps to start a discussion by telling people about your health condition, your symptoms and the severity if left untreated. If you have been trying to hide your symptoms, do not be surprised if at least part of the list is new to them or if they are a bit resistant to hearing about it while thinking about how it may or will affect them.
Let them know that you are doing your best to feel comfortable, and safe, and in control – and that you need their support.
It helps to remember that they likely do not know anything about the condition – or that eating gluten-free is a treatment.
If you have celiac disease:
Explain that the treatment does not involve any medicine or medical procedure. The treatment is “just” for you to eat and drink 100% gluten-free. Explain what that means as a practical matter. You don’t have to get graphic about the details.
Beyond Celiac has a video that shows a conversation to have with your relatives that can be used as a guide. Click here.
One way to educate about the condition and treatment is to watch the Celiac Project Documentary together. It is available on Amazon Prime as well as for free from CeliacProject.com.
If you have gluten intolerance:
Explain that the treatment is that you have to eat and drink gluten-free. After an initial period of ingesting only gluten-free, it is your choice whether to go 100% gluten-free or ultimately experiment with foods and/or drinks with gluten in them. Let people know that you will keep them posted about your decision and needs.
Let people know that you are doing your best to feel comfortable, and safe, and in control – and that you need their support.
A last thought: what doesn’t break, strengthens.
TIPS
Gluten Intolerance Group suggests the following with respect to relationships. For more detail, see: Gluten.org
Set hard boundaries with disrespectful family and friends. Come up with a “boundary-setting statement,” one that clearly explains your situation, how it makes you feel, and establishes what you are willing to discuss and what is off limits.
Keep in mind that you are worthy of safe gluten-free food and the acceptance of friends and family.
You do not need to apologize for who you are or your needs.
Accept that some people will never understand your need.
Know when to walk away from a conversation. Arguing is not worth it.
Significant Other
Expect love, kindness and support from your significant other.
Keep in mind that your health condition is not easy on the person with whom you are sharing your life. Still, as you can imagine if it were your significant other who had a diagnosis, it’s important to share what is going on. Whether it enhances your relationship or strains it is up to the two of you.
Keep in mind that your significant other loves and cares about you – and is doing his or her best.
As with your family, if your partner was not part of the diagnosis process, inform him or her about your health condition – and about the treatment. Don’t assume that the bits and pieces that have been talked about over time is enough – particularly if you haven’t been sharing all your symptoms. Put it all together – including that you will need the person’s help in a variety of situations, such as when going to a restaurant and when traveling.
Be honest. If you’re not, it is likely that resentment will build in one of you - if not in both of you. As Jennifer Esposito says in her book, Jennifer’s Way: “If you aren’t honest with your partner, eventually resentment will build up on one of the ends, if not both. Your other should always respect the fact that you need to live this way. They don’t have to understand it completely… you should absolutely discuss it and explain what you’re dealing with because that also educates people, and you never know who you might help with your words.”
Think about asking your significant other to eat only gluten-free while in your home and to go to dedicated gluten-free restaurants when possible. You’re not asking the person to eat gluten-free outside of the home – only in it. When thinking about making the request, keep in mind that it is not as if you are asking the person to give up something meaningful. It’s likely that most of the person’s favorite meals can be made gluten-free and that gluten-free restaurants serve food that is as delicious as other restaurants. It’s something one can do to help. It will be easier for everyone - and help prevent inadvertent glutening.
If your significant other doesn’t agree to a gluten-free home, together, determine what shelves, pots, pans and cooking utensils will be gluten-free.
Let your significant other know that you cannot be spontaneous all the time.
If there is a problem, work through it.
Particularly if you are being bullied, or if there is malice or negativity, consider speaking with a counselor who has worked with people requiring a gluten-free diet. Your physician or dietitian may be able to suggest someone local. If not, search the internet. Also consider seeking support from a support group. If none exist in your area for couples, consider starting one. For information click here.
If you are not with an understanding person who doesn’t respect your health condition and needs due to it, the person is not respecting you. Perhaps it is time to look for someone who will. There is enough going on in your life thanks to your diagnosis without one of the most important people in your life pushing back at you. Remember, you will have this condition for the rest of your life or until a cure comes along.
TIPS
Exploring the gluten-free world together can be fun. Involve your significant other in choosing new restaurants and new recipes.
FAMILY MEMBERS
Testing Family Members If You Have Celiac Disease
Let people related to you by blood know that celiac disease is genetic – it runs in families - and that they have an elevated risk of having or developing celiac disease, even if they do not have any symptoms now. Long-term exposure to even tiny amounts of gluten can increase the risk of other serious conditions, including cancer. As a result, they should get tested for celiac disease.
People related to you by blood include children, parents, brothers and sisters, grandparents, grandchildren, aunts, uncles, nephews, nieces and cousins.
A reasonable, affordable, first step is a blood test administered by a physician. It may even be covered by health insurance. (There are home tests, but none have been proven yet.)
A genetic test which could rule out celiac disease is expensive and may not be covered by insurance. Also keep in mind that while up to 40% of Americans carry celiac disease genes, only 2 – 3% of these people actually develop it.
If money is an issue, suggest that your relatives check with their insurance carrier to find out what tests are covered.
If a close relative is negative now, the person should get tested periodically. A negative celiac disease test now does not mean the person will not test positive in the future. Your gastroenterologist can give you an idea about how often that should be.
TIPS
Think about where and when to bring up the subject. It is best to talk in a quiet place with no distractions and not during a meal so food does not become the main focus.
Research from Beyond Celiac shows that family members are more open to the conversation when it is done in a one-on-one, personal way.
Before starting the conversation, it is helpful if you have a good understanding of celiac disease so that you can answer questions a family member may have. For information about celiac disease, click here.
Instead of saying something like “I have celiac disease so you should get tested”, one suggestion is to say something like: “I have celiac disease and it is genetic. That means you are at a much higher risk than the average person. I’m telling you this because your health is important to me and I want you to know the facts.”
Let the person know not to stop eating gluten before getting a test.
Consider leaving talk about a gluten-free diet out of the discussion. Gluten-free diets are often associated with fad diets, rather than a medical treatment. Experience indicates it is also better to focus on the disease, not the treatment for the disease.
If your relative decides not to get tested, it is his, her or their choice.
The Kitchen
If you live with your family, while telling them about your condition, talk about what you will have to do in the kitchen if it is not gluten-free. (For information, see Kitchen)
Think about asking everyone to eat only gluten-free while in your home. You’re not asking them to eat gluten-free outside of the home – only in it.
When thinking about making the request:
Keep in mind that it is not as if you are asking people to give up something meaningful. It’s likely that most of their favorite meals can be made gluten-free and that local gluten-free restaurants serve food that is as delicious as other restaurants. It’s something they can do to help. It will be easier for everyone - and help prevent inadvertent glutening.
Think about including healthier eating as part of the change. It expands the benefits of the change to all family members.
If everyone doesn’t agree to a gluten-free home, together, determine what shelves, pots, pans and cooking utensils will be gluten-free.
Think about what to say when a family member says: “A little bit won’t hurt you” or “Aunt Marni spent hours making your favorite dessert for you” or “you didn’t look that sick before.” Be kind. Their intentions are good.
TIPS
If there is malice and/or negativity, or if you are bullied, consider speaking with a trained counselor.
Friends
Expect love and kindness and support from your friends, just as you do from family.
Keep in mind that your health condition is not all you are – you are still a complex, wonderful human being and deserving of friendship and respect.
In addition to asking about going to dedicated gluten-free restaurants when possible:
Ask if it is okay to bring your own food when going to eat at their place. Remind them that getting together isn’t about the food: it’s about being together and the fun. If there is a holiday, it’s about the holiday spirit.
Let your friend know that if you go to a restaurant together and you’re not comfortable about the safety of the food, you may just order wine.
Let friends know that if you don’t eat something they made for you that it is only because it may not be safe – not because you don’t want to. Cooking gluten-free and keeping the finished product from cross contamination isn’t easy for a person who does it all the time – much less for a person who does it once in a while.
Think about what to say when a friend says: “A little bit won’t hurt you” or “Maizie spent hours making your favorite dessert for you” or “you didn’t look that sick before.” Be kind. Their intentions are good.
Don’t be surprised if you lose some friends. Sometimes people move on different paths and not all friendships last for a lifetime. Do you really want to keep people in your life who can’t or won’t accept you for who you are? Also don’t be surprised if you gain friends who are either going through what you are, or who can relate. There is a whole community of wonderful people who have instant empathy for what you are going through. As Zeke stated it: When you have celiac disease and meet someone else who also has it, there is a wonderful moment when “I see you” happens.
TIPS
If going to a friend’s house for dinner or a holiday becomes a problem, consider hosting a dinner or holiday yourself.
If you learn of a person with symptoms that seem to be gluten related, consider suggesting that he or she get tested. Don’t push.
For Family And Friends Of A Person Who Has To Eat Gluten-Free
Keep in mind that while celiac disease and non-celiac gluten sensitivity are not life threatening if a gluten-free diet is followed, celiac disease and gluten intolerance are serious health conditions which are likely to result in a new normal. Literally a crumb can cause months of problems for the person you care about.
Be inclusive. Wouldn’t you want to be included?
Be supportive. The person you care about has to think about eating and drinking gluten-free all the time. Having to eat gluten-free 24/7 can be daunting. It can take a lot of energy and focus to constantly think and plan about food.
Kindness and inclusion go a long way and are a bedrock for the support that people need.
Do not be surprised:
That more planning is often necessary and there is much less spontaneity when it comes to outings, parties, restaurants and travel. Keep in mind when planning things in advance that the person you care about may not be feeling well on a particular day or at a particular time. There is no question that this is difficult on you (and him or her), but always remember how bad it must be for the person you love.
If there are times when the affected person has a difficult time or is anxious, depressed or evidencing any other emotional upset. Such emotions frequently accompany having to eat a strict gluten-free diet - or being glutened – particularly when glutened by mistake.
If a person has mood swings or experiences anger, it may be a symptom of being glutened.
If there are times when the person doesn’t want to be touched at all – must less in an area that is problematic at the moment.
If kisses become on the cheek instead of on the lips. Lips that just ate gluten can cause a person with gluten issues to be glutened.
If you do not know everything that is going on with the person you care about at any particular time. Not everyone discusses every detail of what they are feeling or going through at any particular moment.
If the person you care about seems to be well when with other people, but not well when alone with you or at home. People frequently pretend to be okay in front of other people – but let go when alone or with a loved one. Hiding exhaustion or not being well adds to the burden already imposed by whatever is causing the need to eat gluten-free.
At a multitude of doctor visits. Multiple doctor visits do not make a person a hypochondriac. Celiac-disease and gluten sensitivity can be accompanied by a lot of seemingly mysterious side effects. In fact, there may be other health conditions that appear periodically – just like in people who do not have to eat gluten-free.
If food bills will be higher than with goods containing gluten
Be prepared to help. For example:
Keep snacks on hand.
Help look for ways to be spontaneous such as when doing non-food related activities.
Stay up-to-date about local gluten-free restaurants.
Respect the personal boundaries of the person you care about
When going to a restaurant:
Do not assume the person’s comfort level.
Ask if the person with celiac disease or gluten intolerance wants to pick the restaurant.
Understand that even if a restaurant is vetted ahead of time, or you’ve been to it before, the person asks additional questions in the restaurant.
It helps to be a separate set of eyes for food coming out of the kitchen, for food or drinks spilling to another plate or glass, for the wrong plate being served to the person who needs to eat gluten-free, for serving utensils being used for both gluten and gluten-free food, for a bread basket or other items being passed back and forth, and children throwing food.
Do not buy a gluten-free treat for the person unless you know it is something the person normally buys from the same source. Normally, people without a gluten related health condition are not as good at reading labels as the person with gluten issues. Also, there may be additional food restrictions on top of gluten issues that you may not know about.
When shopping for food together, help look for gluten-free items. If you see a new item that is gluten-free, let the affected person know about it.
When hosting a dinner at your home, and with the understanding that even a crumb of gluten can be harmful:
If you do not have extensive experience cooking gluten-free, do not surprise the person you care about by cooking a gluten-free meal. If you skim our information about kitchens and cooking, you will see that it is hard to get it right – and a simple slip up can cause the person you care about harm for a long time.
Do not assume you know what will make the person comfortable – even if there have been numerous hostings. Reach out and ask what would make the person most comfortable. Bring their own food? Come early and cook together? Eat ahead of time?
When thinking about travel, try to avoid pre-planned meals. It is not likely they will work for a person who has to eat gluten-free.
When you learn about other people who have celiac disease or are gluten intolerant, or gluten-free resources, let your family member know. It is always good to have someone in a similar situation to speak with and to know more information.
Don’t ever tempt the person. Eating gluten once in a while – even if it is in a food you spent hours making – is not ok for people with celiac disease. People with gluten intolerance need to set their own food intake.
Reconsider your kitchen. Family members and roommates should be open to discussing either keeping the kitchen gluten-free or discussing how to make it safe.
Remember: we are talking about a serious medical condition, not a choice.
NOTE:
If you are a child of, or a close blood relative to, a person with celiac disease:
Consider getting yourself tested – even if you do not have any symptoms. For a list of symptoms commonly associated with celiac disease, click here. Note how something like a problem with tooth enamel could be a symptom. While celiac disease is hereditary - symptoms are not.
Early diagnosis can prevent the development of associated autoimmune diseases, osteoporosis and symptomatic celiac disease. Approximately 10 percent of first-degree relatives have celiac disease. The figure rises to 25 percent if the relative has an autoimmune disease. People with celiac disease have been known not to evidence any symptoms. Symptom free does not mean that celiac disease is not doing damage to the body – and possibly causing related diseases. Genetic testing is not used to diagnose celiac disease but it can eliminate celiac disease. Keep in mind that few people who are genetically predisposed to celiac disease actually get it. For information about testing, click here.
Last, but not least: take care of yourself and your needs, including also using his or her diagnosis as an opportunity for you to eat healthy and exercise. You can’t help if you’re not functioning well yourself.
TIPS
Keep in mind that gluten does not have to be a part of every conversation. The person you care about is much more than a medical condition.
Don’t make fun of a health condition. If the person affected wants to add humor to their situation, that is a choice to be left to the affected person.
Ask if you are unsure of something, including about what a person would do in a particular situation. For example: “what makes you most comfortable when……”
Co-Workers
As a general matter, it is helpful for co-workers with whom you work closely to know about your condition and what it means. If nothing else, it eliminates the stress of keeping a secret – the greater the secret the greater the stress.
It will make life easier – whether an unexpected symptom shows up or you have a business lunch or dinner to attend, but where you won’t be able to eat the food. For a general discussion of dealing with co-workers, click here.