What Do I Do Now?
When I was diagnosed my doctor told me to stop eating gluten, look on the internet for information about celiac disease, and become a “Doctor of Celiac.” I wasn’t given an information packet, brochure or a single piece of paper with information about this disease.
→ It blew my mind. I worked in the ICU and we had written materials available for our patients on everything.
Also we frequently told people to ask their doctors or nurses for advice and to AVOID going on the internet looking for treatment information, so I was shocked when she told me to go find out how to treat myself on the internet… which is filled with unreliable information and opinions.
Sadly, my experience is not unique and I’ve since learned that many doctors are not informed about celiac disease as an adult disease.
As a member of the medical field, I can remember learning about celiac disease in nursing school. It was listed under pediatric diseases and I was taught that celiac presented as a baby or early in childhood.
I was NOT taught that celiac is a disease that can be triggered in adulthood or what those triggers are. My point is that I don’t think all these doctors are bad doctors.
It’s possible that when they went through their education, celiac disease was still considered a pediatric disease that only occurred in adults who had grown up with it. However, education on celiac disease and gluten related disorders is increasing daily and there are major groups in the celiac community helping to change the laws to better protect us.
• Grieve the Loss of Gluten – Allow yourself to feel whatever you need to get through your initial diagnosis. Grief is a natural response to loss or change, so cry, scream, get angry, feel sorry for yourself, and eat your last piece of gluten if you need to. Once you’ve gotten it all out get ready to pull yourself up by your bootstraps and take some action.
Of course you will occasionally have bursts of grieve long after you feel like you have accepted a gluten free lifestyle. , It’s been a couple years and there are days where I find myself feeling extremely grateful one minute and grieving the next.
• Purge your Kitchen – I talk about how to clean out your cabinets and refrigerator in more detail in my post getting rid of gluten. Click on the colored link and it will take you there you there automatically . I donated a lot of the items I had to get rid of which made it a lot easier for me to let things go.
• Educate Yourself on Gluten, Food & Celiac – Knowing what gluten is and how to avoid it is very important and is needed to read labels. You should learn different sources of gluten like wheat, rye, barley, semolina, and farina. There are online lists all over and we will probably add one to this site sometime in the future to help with obvious sources of gluten in ingredient lists.
I have always had a hard time memorizing the lists so I rely more on accurate gluten free labeling and researching foods online before purchasing them. It’s not uncommon for me to see an item in the store, write it down, and then research it’s gluten free status online.
If your looking for safe gluten free foods I will be posting about foods I recommend and including links to them whenever possible.
A lot of online information is misleading or just plain wrong, so getting a couple books can really help clear things up. Celiac Disease: A Hidden Epidemic really helped me out, and it’s been updated. It’s a good book if you are looking for information. Another book, Jennifer’s Way, is less informational, but it made me feel less alone.
• Clean Out Your Bathroom – You might not think about your bathroom when it comes to getting glutened, but anything that goes in or around your mouth is a risk. The biggest bathroom culprits are toothpaste and mouthwash. There are a lot of major toothpaste brands with online information stating that their toothpaste is gluten free and the same can be said about mouthwashes.
Check your specific type though because there are specific Crest mouthwashes that contain gluten according to their websites. I prefer to buy products labeled gluten free because online information can change at anytime without me knowing it. Other things to look out for are chapstics, lipsticks, and powdered makeups.
I will make a post with more to help you decide whether or not to use gluten free make up and safe brands here for anyone interested, but to clarify the gluten reaction takes place from gluten in your digestive tract. You will not experience damage to your intestinal villi from blush touching the skin on your cheeks… there is danger if your inhaling the powder makeups or not washing your hands properly.
If you absolutely LOVE your gluteny make up brand, don’t panic because the only mandatory no gluten items are those going on or around your mouth.
• Check Your Medications – The chance of having gluten in your prescribed medications is small, but you don’t want to work hard avoiding gluten foods and unknowingly be consuming it in a medication. I wish I could tell you to just ask your pharmacist if there is gluten and they will handle it for you, but sadly for now things don’t work that way.
I will get more in depth about gluten in medications later, and here is a website run by a pharmacist to use as a resource. There is no law mandating drug manufacturers disclose gluten in medications so for now we have to be aware of active and inactive ingredients.
• Find Your Town – Getting diagnosed with a gluten intolerance or celiac disease will quickly make you realize how much socializing revolves around eating. It’s very easy to feel isolated and alone which is why it’s important to figure out who your allies are.
Which people in your life will step up and support you and which ones aren’t interested in your problems. You might be surprised by who steps up and who doesn’t, but the important thing is to focus on who will be in your support system and start to build a community around yourself.
This includes an online community which can be very resourceful. In my experience each person in your town has something specific to offer that they are good at.
In my town, my mom was the best at showing how supportive a person can be by welcoming me into her kitchen and never making me feel like keeping areas gluten free was a burden.
Even when I was frustrated by the hassles of the gluten free food preparations and meal planning, she persisted and made us safe meals. To this day, my mom is one of the only people I trust to make safe gluten free foods or baked goods because I know how much work she put into learning about celiac disease.
There are other members of my town that are supportive and great, but who know very little about celiac disease or what I need to do with food.
Each person contributes in their own way and nobody needs to be perfect to be part of your support system, they just have to be willing to show up in some way.
• Join A Support Group – Online or in person find a place you can go with people who are on your same path. Sometimes just hearing other people who are going through the same issues can be a big relief. Unfortunately there are some things that only other people with gluten issues will understand.
One of these things is how difficult it is to go to a catered event and watch everyone else eat beautiful looking appetizers, dinner, and desserts knowing your meal will be a bar in your pocket. You can eat before going to events and bring something in case you get hungry, but it’s not the same as participating.
Sometimes it’s nice to have people around who understand that. People in your support group are great but they will inevitably say something baffling that catches you by surprise… like “you having to eat gluten free is just like me having to be on a diet.”
A support group is a great place to go and not have to worry about someone handing you food with gluten in it.
• Replace Condiment Jars – Get new peanut butter, jelly, mayonnaise, butter, mustard container if they are the kind that you dip a knife into. I talk about cross contamination here more in depth, but you should know that spreading butter on bread and dipping the knife back into the butter can leave crumbs which are enough gluten to trigger an autoimmune reaction.
I also recommend replacing them with squeeze bottles whenever possible so family members can squeeze the mayonnaise container instead of using a knife to get it out of the jar.
• Some People Cheat… and Lie – I almost didn’t add this part because it’s so negative but I feel it’s important to know, especially if your new to the gluten free community.
First thing is that there are celiacs that cheat on their diet, without shame and in public. This is important because if you are being offered food, it’s often because another celiac ate it so it must be safe.
Restaurant employees already have to learn so much about our dietary restrictions, and when customers they know to be celiac order a “side of dressing” or some other not gluten free item it can become very confusing.
The second thing is some celiacs may tell the wait staff a little bit won’t hurt, I’m taking a day off, or other nonsense that damages the little knowledge employees have about celiac disease.
This may cause wait staff to dismiss the celiac who comes in with strict requirements claiming they can’t tolerate any gluten at all, and they may write you off as a hypochondriac. Afterall, they know plenty of celiacs who eat gluten once in awhile.
So where does lying come in? The first type of dishonestly is subtle but I can’t tell you how many times I have had people tell me they are also gluten free, only to see them eating gluten later in the day. I’ve even had someone tell me how strict their gluten free diet is while they ate gluten in front of me.
When I say these people lie, it’s more to themselves, but it still does damage to public perception about our condition and what people with gluten disorders can and can’t eat. It can also hurt you if you believe every person who hands you food and says don’t worry I can’t eat gluten either.
Try to keep this in mind at your next BBQ.
The second type of lying is more malicious and extremely damaging to those of us who are gluten free for health reasons and out of necessity. There are people who intentionally claim they have celiac disease because they are temporarily avoiding gluten in the same way they are staying away from carbs.
I was listening to a podcast the other day that covers all different kinds of healthy eating. They have episodes on topics like eating low sugar, paleo, vegetarian and taking supplements, basically topics about healthy choices you can make in your diet. One of their many episodes was about eating gluten free so I gave it a listen.
About 20 minutes into the episode, the hosts told their listeners that the best way to get taken seriously at restaurants is to lie and say you have celiac disease. They said this would make the waiter drop everything and serve you more quickly, giving you whatever you want.
The problem I have with this strategy is that non celiac/gluten intolerant people likely aren’t completely educated on what gluten free is.
Also, it’s extremely difficulty to live 100% gluten free, so when it’s a diet choice cheating is no bid deal, it’s like having a cookie when on a diet.
For these two reasons, having people presenting themselves as celiacs in public only confuses an already difficult situation …public education. For those of us with gluten disorders this is an issue of life and death, not just a fun diet we are trying out.
That podcast was a reminder that not everyone claiming to have celiac disease is telling the truth, especially online. This is why it’s great to find an online community with people you trust.
I’ve met great people in real life at the gluten free expos and then followed their online profiles and recommendations because I know I can trust them.
Being able to look up a product and quickly know it’s safe to eat, because someone I follow and trust online is celiac and eats it has been so freeing.
Some people might say this diagnosis doesn’t change anything but unfortunately that’s not my experience. I’m someone who lives by a strict gluten free diet (fortunately my last endoscopy reflects this) and my life is not the same.
For now I don’t live in a world where I can spontaneously pop in to a restaurant with friends, glance at the menu and order food just like everyone else at the table. (I have hope that one day there will be so many dedicated gluten free food places that we can all experience care free dining regularly.)
I pre-plan meals and take food with me everywhere just in case I get stranded some place without gluten free foods available. I’ve had to take responsibility for myself and make sure I don’t end up in situations where I’m eating questionable foods because there just aren’t other options.
I’ve also found out how supportive my loved ones are and who is in my “town”. In my experience your life will be different, but it will be good again. Take time to grieve while building a new routine with the support of your Town and you can still have a full life… without gluten.
Celiac Town is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to amazon.com.