Being newly diagnosed with celiac disease can be overwhelming. Read this post for words of encouragement and tips to mastering a gluten-free lifestyle.
Tag: coeliac disease
How to Check Food Labels for Gluten
Knowing how to check food labels for gluten is an important skill for people with celiac or other gluten-related disorders.
This guide on how to check food labels for gluten will help you determine if a packaged food item is safe for someone with celiac disease.
It’s important to note that these are general standards and some people with celiac disease or NCGS have even stricter standards then listed below. If you’re buying food for someone who is living gluten-free, be sure to check with them on if the item is acceptable too.
How to Check Food Labels for Gluten
When approaching a food label, remember the acronym “CANS”:
- C – Certifications & Claims
- A – Allergen Statement / Warning
- N – Not Safe Ingredients
- S – Suspicious Ingredients
Certifications and Gluten-Free Claims
The first step to identifying gluten in food is to look for gluten-free claims and certifications on the label.
If a food product has a gluten-free claim or certification in the USA than that food item is celiac-safe per FDA law (with the exception of oats, learn more about the oats and celiac here.)
This is because per FDA law, anything with a gluten-free claim (which is “gluten-free” or “no gluten” etc.) must have <20ppm of gluten in it, which is considered celiac-safe.
In some countries, this cut-off is even lower.
If you can’t find a gluten-free claim or certification anywhere on the label, it’s time to move on to the next step!
Is there an Allergen Statement?
If gluten isn’t listed in the ingredients it’s time for the next step on checking food labels for gluten. The next step is to read the allergen statement.
There are two types of allergen statements. One of which is required per FDA guidelines and one that is voluntary.
The required allergen statement is the “contains” statement. This is the statement that clearly calls out any top 8 allergens in the food item. If a food item has a “contains wheat”, it is not safe.
The voluntary statements are what’s known as the Allergen Advisory Statements. These statements are the “may contain”, “processed on the same equipment” and “made in the same facility” claims. This statement makes things a little more complicated.
This step is very individualized. Some people will eat foods processed on the same equipment and facility as gluten, others will not. I personally will eat food processed in the same facility but not always on the same equipment.
What’s important to note about allergen advisory statements is that they have been researched to not be a good indicator of the gluten-free status of food.
Keep this in mind when deciding what you are comfortable with when reading a food label. And when in doubt, consult a celiac-specialized dietitian, like myself.
Also something to note is that the CANS acronym is in the order it’s in for a reason, so the allergen statement is irrelevant if you’ve identified a gluten-free claim or certification on the product.
If the allergen statement looks good, move on to step 3 of the CANS acronym.
Not Safe Ingredients
Next on how to check food labels for gluten is checking the label for obvious unsafe ingredients.
If you can’t find “gluten-free” anywhere on the food item or label, you need to read the ingredient list.
When reading the ingredient list you need to look for any obvious gluten-containing ingredients.
Remember the acronym “BROWS” which stands for Barley, Rye, Oats (sometimes), Wheat, and Spelt. I talk more on these foods to avoid with celiac in this post.
If you don’t see any unsafe ingredients on the label, move on to the last step.
Lastly, are there any suspicious ingredients mentioned on the food label without a gluten-free claim? These ingredients are those that might not obviously contain gluten if the label isn’t specified as gluten-free. Examples might be spices, natural flavoring, malt, and more.
For a more in-depth list of suspicious ingredients, check out my gluten-free label-reading workbook which features pocket guides, practice problems, and a FAQ section to help you build your label-reading skills.
Contact the Manufacturer (optional)
Sometimes I will contact the manufacturer or company about a food I am unsure about. I recommend this especially if you anxious or want more info. I find the best way is to call, email, or DM companies on social media.
This can help clarify any questions you might have about the gluten-free status of a food item.
Gluten-free Label-Reading Doesn't Have to be hard...
While there can be a lot more to reading food labels, I hope this post on how to check food labels for gluten has been helpful. I think it provides a solid foundation and starting point for finding safe food. Do you have any tips you want to share? Leave a comment.
Get the Celiac Label-Reading Workbook
Cross-Contact and Celiac Disease 101 Cross-contact and celiac disease go hand in hand. This is why cross-contact is a very important aspect of a gluten-free lifestyle. If you have celiac, you need to watch out for your food coming into cross-contact with gluten. What is …
As someone striving to be an advocate in the gluten-free community, it has become apparent to me that there is a huge issue. There is a divide in the gluten-free community and it’s making us weak. It’s making people confused when they try to serve us food and it’s causing some of us to be bitter.
In this post, I hope to discuss why there is such a huge divide and hopefully this post can serve as a method to start a PEACEFUL dialogue between conflicting sides. Ultimately, I hope to bring everyone closer together because living gluten-free isn’t easy and requires support. Until we can support each other we can’t expect people outside of the gluten-free community to support us.
Reasons behind a Gluten-Free Lifestyle
Notice I said Gluten-free lifestyle and not a gluten-free diet. I used this specific terminology because lifestyle implies that eating gluten-free is for life versus a gluten-free diet which might be lifelong or temporary situation.
First I want to talk about why someone might be living gluten-free. I think there is a huge misunderstanding between people diagnosed with celiac disease, everyone in between, and fad dieters.
This is where I see most of the divide in the gluten-free community. Celiac disease is an autoimmune disease where your body attacks itself when you consume gluten. Symptoms include chronic inflammation, GI upset, brain fog, fatigue, malnutrition, damage to the small intestine etc.
To be diagnosed with Celiac Disease you have to have a positive blood test and biopsy. For both, you should eat gluten before testing or you might get a false result.
Something to remember about getting a Celiac Diagnosis is that it requires that you have access to health care but more on this later.
Lastly, people living gluten-free because of celiac disease tend to need strict gluten cross-contact prevention. This means that people with Celiac Disease tend to need gluten-free food that follows stricter guidelines than people with NCGS (but not always, sometimes people with NCGS are more sensitive to gluten than people with Celiac Disease but more on this later).
Non-Celiac Gluten Sensitivity (NCGS)
People with non-celiac gluten-sensitivity (NCGS), also known as gluten sensitivity or gluten intolerance, often have determined their sensitivity through food sensitivity testing, elimination diets, and through negative celiac disease test results.
People with non-celiac gluten-sensitivity often experience chronic inflammation, GI upset, brain fog, anxiety and much more. The difference between non-celiac gluten sensitivity and celiac disease is that people with NCGS don’t experience small intestinal damage when they eat gluten. It’s important to note that just because there is no intestinal damage, that doesn’t mean people with NCGS aren’t suffering too.
This group of people living gluten-free often are unsure whether or not they have Celiac Disease or NCGS. People in this category simply know they feel better gluten-free.
Often people who are unsure where they fall lack access or lacked access to health care at some point. That or their health care providers weren’t listening or failed to do testing and these people had to take their health into their own hands.
Typically these people were seeking relief in GI issues and tried a gluten-free lifestyle to see if it helped resolve their issues. Often when they find going gluten-free helped, they try to seek help from health care professionals only to find that to be tested for celiac they’ll need to suffer through 6 weeks of eating gluten. Often this isn’t feasible (who wants to suffer through eating 6 weeks of eating gluten if you know it’s going to be painful) so they choose not to be tested and to maintain a gluten-free lifestyle.
Other Medical Diagnoses
There are a few health conditions that living gluten-free can help manage. Often people with Hashimoto’s disease can find symptom relief by living gluten-free. It has been suggested that people with PCOS or IBS could also find relief by living gluten-free. There are other health conditions too where living gluten-free can be helpful in symptom management.
People managing health conditions with a gluten-free lifestyle will likely have health care access. Additionally, their cross-contact and gluten exposure tolerance will vary greatly. Some requiring strict gluten-free guidelines and some requiring more lax guidelines.
Fad dieting is a huge reason behind people discrediting the need for safe gluten-free food. At some point, someone decided that going gluten-free would be a great way to lose weight. People who are gluten-free for dieting purposes often don’t care about cross-contact. These people are often the ones enjoying cookies on the weekend but being strict during the week.
I want to make it clear, while fad dieters a small part of the problem, they are not the sole cause for our struggles. Additionally, fad dieters are struggling in their own right and deserve empathy.
As someone diagnosed with celiac disease, I empathize with anyone living gluten-free who doesn’t have the celiac diagnosis behind them. I support everyone who is living gluten-free for health reasons but I am very concerned about fad dieters.
Concerns Expressed by People With Celiac Disease
I opened my Instagram up to discussion with my followers. I specifically asked them what some of their concerns were towards NCGS and other gluten-free living folk. I want to make it clear here, it’s frustrating I get it, and you are allowed to be frustrated. However, don’t take your frustration out on someone who is trying to do the same thing you are, find safe food.
“Some people don’t care about cross-contamination”
It’s very frustrating not to be on the same page as everyone else living gluten-free. Some people are lucky enough not to have to worry about gluten cross-contact, or they don’t even know they have to worry about it. The problem here lies in the gluten-free community needing to be able to communicate their individual needs and have those needs (no matter how different from the other) be respected.
It shouldn’t matter if gluten-free Kate down the road ate a bowl of Cheerios at your house. I’m not touching that cereal with a 10 ft pole, now respect that. Or it shouldn’t matter if the last gluten-free person didn’t ask you to change your gloves before making their meal, I am asking you to please do so, so please do.
We also shouldn’t forget, having support is crucial. Some people lack support in their gluten-free lifestyle and can be pressured into not advocating or speaking up for their needs.
In my opinion, this is a matter of getting people to respect our individual needs and stop expecting us all to eat one specific way.
“I only feel “negatively” towards people who don’t take their gluten-free diet seriously”
Yes, fad dieters are a problem. They are struggling and their struggles are starting to cause us to struggle. We have diet culture to blame for this.
“The Choice Was Taken Away From Me”
This is a very common view point that I see often. People with Celiac disease have to go gluten-free or they risk nasty forms of stomach cancer and malnutrition. They feel like their choice was taken away from them because there is no “cheating” ever for them.
While I think their feelings are valid, I encourage everyone to first consider are you upset with people committed to living gluten-free or are you upset with fad dieters? For a lot of people living gluten-free for non-celiac gluten-sensitivity or even those living GF to manage health conditions, eating gluten means getting sick.
Maybe they aren’t at as high of a risk for stomach cancer, but they still get sick just like us. They often are very proactive at trying not to get sick. I don’t know about you, but if I had a choice between eating bread and spending hours on the toilet, or not eating bread and being free from the porcelain throne, I’m not going to eat bread…
Issues I see Fueling the Divide in the Gluten-Free Community
There are a variety of concerns and arguments fueling the divide in the gluten-free community. That being said, I see two issues that are fueling this divide. The first problem I see is that not everyone has access to health-care, especially in the United States. The second problem I see is that people expect a gluten-free lifestyle to look one way, when in reality, a gluten-free lifestyle is going to look different for everyone.
Access to Health Care
First of all, health care in the United States is 100% a privilege. Not everyone has the time to see a doctor, the resources to get to a doctors office, or health insurance. Not to mention, diagnostic testing is expensive. So not only will you have to have health insurance but you’ll likely have to fork out some cash too. Furthermore, getting tested for celiac disease requires that you have a health professional who listens and is open to testing.
I just want to say that there is a serious problem in our healthcare system if people feel so unheard and lack access to health care to a point where they take it upon themselves to try restrictive diets in an attempt to find relief.
We can tell people all we want not to try out restrictive diets on their own but when they feel like they have no other option, it’s still going to happen. I have a lot of empathy for people who feel like they have to do it on their own. Who lack access to health care or feel unheard by their doctors to a point where they feel like they have to take their health into their own hands.
Imagine that you’re stuck in the bathroom 5+ time a day but you have no idea why. Now imagine that you go to your doctor with your concerns and they tell you that you likely have IBS. They give you some meds to manage symptoms and send you on your way, but you still find yourself in the bathroom all the time. Then someone suggests you try going gluten-free, so you do, and suddenly you’re not in the bathroom for hours. For these people, and anyone else finding relief living gluten-free, their gluten-free lifestyle isn’t a choice, it’s a necessity; just like people with Celiac Disease.
If you’re reading this and feel like your doctor isn’t listening to you, you have EVERY right to go find one who will. PLEASE don’t go on this journey alone!
And to the people struggling to find resources to see a doctor and find relief, I see you and I wish there was more I could do to help.
A Gluten-Free Lifestyle does not look the same for everyone (even in the Celiac Community).
For all my fellow friends with Celiac, have you gotten this beautiful number before? “Oh you can totally eat this, my other friend with Celiac did”
So you read the ingredient label and go… “Yeah, I’m not eating that”. If this hasn’t happened to you, you’re lucky. This has happened to me so many times I can’t even count.
A huge reason behind why there is such a divide in the gluten-free community is because we fail to understand that everyone living gluten-free has different gluten-free standards. Every person diagnosed with celiac disease is going to have a slightly different gluten-free lifestyle than the next. The same goes for everyone else living gluten-free.
A gluten-free lifestyle is highly individualized. You can argue all you want that people living gluten-free for Celiac have increased needs etc. but even people living gluten-free for Celiac Disease require an individualized approach with individualized gluten exposure standards. It’s not just the NCGS community that has different standards, so do people with Celiac Disease.
The real problem is people expect a gluten-free lifestyle to look one way, and one way only, and that’s just not how it works.
Everyone living gluten-free (Celiac or not) has a different gluten-exposure tolerance level. Studies have found that people with Celiac Disease can experience intestinal damage at exposure between 10mg-100mg (though doctors often try to encourage people with celiac to stay below 10mg). People with Non-Celiac Gluten-Sensitivity can experience symptoms in that range of exposure as well.
People living gluten-free are coming from a variety of backgrounds. From living gluten-free for symptom management related to medical diagnoses, or living gluten-free because of NCGS, to following a gluten-free lifestyle because of Celiac Disease; we are all in this together.
Living gluten-free is isolating, restrictive, and difficult. Allowing parts of our community to struggle and go unsupported is hurting us all. Again, if we can’t support each other, how can we expect others to respect and support us?
When you have celiac disease, you have an autoimmune disease. This means your immune system isn’t operating appropriately. In the case of celiac disease, your immune system is being overactive and attacking things that don’t really pose a threat, thus causing damage. This overactivity, in …
Self-Care and Celiac Disease - Why It's Important + 15 ways to Practice it
Self-care and celiac disease go hand in hand. While self-care is important all of the time, it’s especially important with autoimmune disease like celiac.
Below we will talk about why self-care is important with celiac disease and how to practice it.
What is Celiac
Celiac disease is an autoimmune disease that impacts the digestive track. Basically, when you have celiac disease your body attacks itself when you eat food that contain gluten. This causes damage to the small intestine that can lead to malabsorption, nutrient deficiencies, stomach cancer, and more.
There is also a condition called non-celiac gluten sensitivity. This means that someone does not have celiac disease but they are still sensitive to gluten. Often symptoms of celiac disease and non-celiac gluten sensitivity can look like each other which is why it’s important to rule out celiac disease with testing.
Either way, a gluten-free lifestyle is restrictive. Whether you are gluten-free because of celiac disease or because of non-celiac gluten sensitivity, self-care is important to maintaining a healthy gluten-free lifestyle.
What is Self-Care
Self-care is the process of taking care of yourself. It’s not rocket science, it’s just simply making time for you.
Self-care is a positive approach to coping with events and life. This can apply to both physical and mental health and can include activities that help you cope and relieve symptoms of different medical conditions.
Whether it be work, friends, family, your home, etc. it’s hard to take care of these things when we are lacking in the self-care department. You can’t pour from a glass that’s empty.
Why Self-Care is Important When you have Celiac Disease
While self-care is important always, no matter what, it’s especially vital when you’re following a restrictive lifestyle, like the gluten-free lifestyle. It can help you cope with feelings of isolation. It can help you cope with feeling misunderstood, unsupported, frustrated, lonely, hangry, and sick.
Let’s be real, it sucks having a disease that impacts our entire life. In fact, studies show that sticking to a gluten-free diet (or living gluten-free) can feel more burdensome than lifestyle treatments for other common conditions. A gluten-free lifestyle can be so burdensome that researchers found that non-adherence can be a serious problem in those diagnosed with celiac disease.
It can get lonely, frustrating, and just downright exhausting. Constantly having to think 10x harder about going to lunch with friends or attending a holiday party is taxing.
This is why you have to make sure that you are taking care of you, first and foremost, so that you can advocate for yourself fearlessly and effortlessly.
Signs You're Neglecting Self-Care
As hard as self-care is, it is so important. If you aren’t taking care of your needs then it can be hard to do thrive with celiac disease. Signs you’re neglecting self-care include:
- Difficulty staying calm in stressful food situations
- Making safe decisions around food is hard
- Overthinking your food choices
- You’re not feeling better after eating gluten-free for celiac.
- Experiencing frequent indigestion (if you are so burnt out and not resting – your body can go into survival mode and diverts blood flow and energy from your digestive system to your extremities for survival and defense)
How to Practice Self-Care With Celiac Disease
First of all, let me say, I get it. Self-care is hard. It’s hard to love yourself when it feels like your body has betrayed you. How dare it request that you remove what feels like an entire, tasty, delicious, food group.
So I won’t sit here and pretend like self-care will be an easy habit you’ll be able to just pick up at the drop of a hat. No, it will likely be hard to make the time and to find practices that help you. Despite this, much like switching to a gluten-free diet was hard but necessary, so is practicing self-care.
Self-care, when you have celiac disease, can involve developing habits that help prevent gluten exposure. Alternatively, it can involve creating a plan for how you will let yourself recover after gluten exposure.
Celiac Disease Self-Care Practices
- Journal your way to better gluten-free living with my Celiac Disease Wellness Journal
- Be forgiving – your cousin didn’t mean to gluten you
- Have self-compassion – you are only human.
- Be grateful – your friends don’t have to support you
- Advocate for yourself relentlessly – no one else is going to do it for you
- Give yourself permission to say “no” to social invites – it’s for your own sanity
- Embrace “JOMO” – the joy of missing out can mean the joy of zero gluten exposure and zero stress
- Only accept support – surround yourself with people who understand and will help advocate for you
- Join a support group – it can feel amazing venting to people who just get it (click here to join my dietitian-led virtual support group)
- Develop a self-care plan – for the week, month year, and for when you’re sick, exposure to gluten, or feeling unmotivated
- Meal-prep – take the stress out of figuring out safe foods to eat by preparing ahead of time
- Hire a gluten-free dietitian – this is totally shameless self-promotion right here, but hi! My name is Tayler Silfverduk, let me help!
- Eat more fruits and vegetables – nourish and health that gut
- Start a food journal – keep track of foods that might be additional triggers for you. Are you sensitive to cross-reactive foods? Specific brands? Can you tolerate food processed on the same equipment? What about the same facility?
- Set, Communicate, and Uphold Boundaries – keep yourself safe and create peace of mind by letting people know what you expect so that you can stay safe
- Eat Mindfully – eating mindfully can help you hone into your intuitive eating skills and potentially help you eat even more safely
- Treat yourself after a stressful food event – for example, if you’re going to a party or restaurant with friends, have something you can do to take care of yourself after.
Want more guidance? I developed a self-care planner specifically for people with celiac disease! Click the link below to grab YOUR copy!