Being newly diagnosed with celiac disease can be super overwhelming. You’ve lived your entire life up until this point not thinking twice about gluten and now suddenly you’re supposed to completely remove it from your life. Seems easy but then you find out it’s in …
Tag: coeliac disease
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Whether you’re newly diagnosed or not, checking food for gluten can be exhausting and confusing. This is why I wrote this guide on how to check food labels for gluten.
This guide on how to check food 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 a Food Label for Gluten
When approaching a food label, remember the acronym “CANS”
|C||Certifications & Claims|
|A||Allergen Statement / Warning|
|N||Not Safe Ingredients|
Certifications and Gluten-Free Claims
A general good rule of thumb is that if “gluten-free” or “no gluten” is on the packaging of food in the USA then the food is safe. This means you can skip the rest of the steps below. Beware of foods that say “no gluten-containing ingredients” or any other variation of that. You want to see “gluten-free” because this means that it has to have less than 20ppm of gluten in it in the USA. In some countries, this cut-off is even lower.
In the United States of America, 20ppm of gluten is considered generally safe for people with celiac disease. This might make you wonder why other countries require there to be lower amounts. The thing is that some people with celiac disease can react to foods with gluten falling below 20ppm. So if you’re buying gluten-free food for someone, you need to check with them if the food is something they’d feel safe eating because everyone has different standards and needs.
If you live in the USA and need food that contains only 10ppm or 5ppm of gluten, you might want to consider contacting manufacturers to see what their products test at. Alternatively, you can buy food items with gluten-free food certifications that test at levels even lower than 20ppm.
If you can’t find “gluten-free 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 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 one 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” or “contains gluten” statement, it is not safe.
The voluntary 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.
For example, personally if I see the “processed on the same equipment as wheat” allergen statement, I will either not buy the product or I will contact the manufacturer to see what their protocol is. However, I will eat foods with “processed in the same facility as wheat” claims.
Not Safe Ingredients
Next on how to check food labels for gluten is checking the label for gluten 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. To the right is an infographic I shared to my Instagram on a few common ingredients to watch for!
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, caramel color, and more.
For a more in-depth list of suspicious ingredients, download my celiac disease workbook by signing up for my newsletter below!
Contact the Manufacturer (optional)
Like I mentioned above, sometimes I will contact the manufacturer or company about the 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.
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.
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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?
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Romantic relationships with celiac disease can be difficult to manage. I won’t lie, dating especially can be hard. While it can be tough, it can also teach you a lot.
For instance, for me, dating has taught me:
◊ Fearless self-advocacy
◊ Boundary setting
◊ Self-respect and self-love
However, I didn’t just learn these lessons right after being diagnosed. It took time and patience. Here are some of the lessons I learned and how you can use them to better your dating experience.
Dating can be scary, especially during a time where a gluten-free diet is typically assumed to be a fad diet. The scoffs and misunderstandings can be hard to deal with. However, it can help teach you to build a thick skin and to defend yourself fearlessly.
Let me clear, never should you have to defend your dietary concerns or disease to anyone. If someone ever pushes you to that point, they are not worth another date.
However, when those moments of question do arise, it teaches you to advocate for self in a whole new way. In a moment of vulnerability, you learn to assert your needs.
A life-lesson that could not have come sooner
Another super important lesson learned from dating with celiac disease. Boundary setting is vital to successfully and safely dating.
Setting the appropriate boundaries will protect you from trying to dine in unsafe restaurants, potential cross-contamination, and so much more.
Some boundaries I suggest you consider discussing with partners include:
Support when dining out
Support can come in many forms.
It can involve having your partner stay silent when you order to prevent any contradictory comments from being said (though if they are prone to making this comments… you might want to rethink things).
It could also mean if things don’t turn out right (say your salad came out with croutons on it), that you expect that your partner has your back. Whatever support you need or want, make sure you tell your partner and set those boundaries.
Depending on how sensitive you are, you may need to set some physical and home boundaries. For instance, you may want to request that your home stay gluten-free. Meaning if your partner visits, they are to only bring gluten-free items through your door.
Alternatively, maybe you set up a “protocol” (so fancy) on how your partner should prepare gluten foods in your home to prevent CC. This will not only demonstrate their knowledge but also their commitment to keeping you safe.
Additionally, you might want to ask your partner to avoid gluten products when around you. If this is too much of an ask, you might consider asking them to wash their hands, face, and brush their teeth thoroughly after eating gluten in order to prevent cross-contamination onto your body, clothes, and mouth (I learned this the hard way).
As your relationship progresses, you may want to consider discussing how you will share a living space. Is your partner okay with going gluten-free? Do you have the ability to have two separate kitchens? Perhaps a more cost-efficient measure might be to have two separate preparation areas.
A separate preparation area might look like this: your partner has an area in the kitchen away from the main preparation areas where they have their own toaster, dishes, and mini convection oven for when they prepare unsafe foods. Think college dorm style mini kitchenettes.
Self-Respect and Self-Love
I can’t tell you how many times comments were innocently made to me about how I ask a lot from my partners. Comments like “it’d be a sacrifice to date you” or “wow that’s a lot” or even “you’re a lot”, all in response to people finding out about my needs. For a long time, this planted a seed of self-doubt.
Was I really asking for too much? Was it really a sacrifice to date me? Did I need to settle because of my “terms and conditions”?
The answer is no. This took me a long time to grasp. As I started studying nutrition and dietetics, I learned how special my condition is. On top of that, I learned how amazing the celiac community is. I began to develop pride in my condition. Not that we don’t have our bad days, but I have learned to really embrace celiac disease over time. With that, I have learned to love myself, to love the food I get to eat, and to love the lifestyle I get to live.
While dating with celiac disease can be daunting, it also leaves so much room for personal growth. As Celiacs, we get the benefit of having an extra weed out process. As in, when we have our first discussion about our disease and needs, we can quickly determine whether or not we should pursue someone further!
Have any lessons learned from dating? Any tips to share? Drop a comment!