Responsibility to the Community

This is me on my Soapbox. I need to say something, and I feel that it warrants the attention of the Celiac Community.

For far too long, there has been massive miscommunication, or downright lack of concern, from some bloggers in the community when it comes to eating safely as someone with Celiac Disease.

I want to state something of the utmost importance right up front: When you have acquired a following in the Celiac Community, you are considered an Influencer, whether you like it or not. What you post/say/write WILL influence members of the community, especially those who are new and seeking answers on how to manage their auto-immune disease. Thus, it is your RESPONSIBILITY to ensure that you are providing fact-based, scientific, truthful, RESPONSIBLE information to your followers.

For example, if you are eating at a restaurant that does not take any precautions in the preparation of their food, and uses a shared fryer, you should not be using #Celiac. Anything prepared in a shared fryer is NOT safe for Celiac consumption, and therefore should not be hash-tagged in that manner (looking at you, @nobread). People who are new to the Celiac lifestyle will do damage to their intestinal linings, and could potentially make themselves very ill. Even if they do not have outward symptoms, their insides are still being affected.

Another example would be eating from a shared bakery. If both gluten and gluten free products are being made from scratch in the same area, there is a very good chance that the gluten free items are no longer safe for Celiac consumption. Flour remains in the air for approximately 24 hours, and could settle on the gluten free goods. In this instance, eating a bagel from this type of bakery would not be considered safe, and should not be consumed by someone with Celiac Disease (looking at you, @glutenfree.followme).

I understand that not everyone takes their Celiac Disease as seriously as some. I get that some people feel that it’s too difficult to follow a Celiac diet when they travel (I disagree though, as there are many people with Celiac Disease that travel while following a strict Celiac diet, and I will link to some of them at the end of this post). However, when you are talking about “living it up” when you’re in Europe because their bread doesn’t bother you, or eating out of shared fryers, etc., you are doing the Celiac Community a disservice. What you are doing is telling new people to the lifestyle that they don’t have to be careful. That is straight-up DANGEROUS.

Celiac Disease is a lifelong commitment to eating a strict gluten free diet. What can you do when you accidentally get glutened? It’s going to happen, trust me. It happens to all of us, no matter how careful we are. Here’s a list of sure-fire things that you can do to get through a glutening:

  1. Hydrate: Drink lots of water. The reason for this is because when you have been glutened, you may throw up, or have diarrhea. It’s common, it happens, so drink lots and lots of water to make sure that you do not get dehydrated. FYI, science shows that people with Celiac disease get dehydrated quicker than those without!
  2. Rest: Curl up in your favourite pyjamas, with your fuzzy blanket and socks/slippers, a cup of tea, and a book. Don’t move. Rest your bones, rest your muscles, rest your brain, because you are going to be down for the count for awhile, so you will need to save your energy.

That’s it. That’s what works. Those are the sure-fire things that will help you get through getting glutened. Know what doesn’t work?

  1. Activated Charcoal: Using this for a glutening is complete bunk. This is used in emergency rooms when someone comes in who has been poisoned. It removes all the bad stuff from the body, but it also removes all the GOOD stuff. If you are on life-saving medication of any sort, the charcoal will adhere to it, and flush it out of your body. AND….gluten is not a poison. Taking activated charcoal will NOT stop the gluten from damaging your intestine.
  2. Probiotics: Again, while these may be good for your body in some way, they will not stop the gluten from damaging your intestines. They will not stop your body from reacting to the gluten.
  3. Gluten-Ease (and any of it’s similar-named family): This is not an option for those with Celiac Disease. It does not stop the gluten from damaging your intestine. It will not lower the amount of gluten that affects you, as it only takes 20ppm to start the damage.

If you are using any of the above steps to “help” yourself after a glutening, please do not hashtag Celiac in your post, as these are not remedies that will help someone with Celiac Disease. It’s misleading, especially when you include a link to your website where you get a kick-back for sales.

Bottom line: be responsible. Care enough about your followers to not recommend unsafe products to them. I’m extremely lucky to live in Canada, where our labelling laws are phenomenal. It is easy to shop here, as all sources of gluten must be listed in plain language on the label. Also, our Celiac Disease foundation, the Canadian Celiac Association, does an amazing job of advocating for our Celiac population. You won’t see Gluten Free labels on Cheerios and Lucky Charms here! It’s also important to be your own advocate, even though there are some of us out there who do our best to advocate for you. Look to your local Celiac organizations for information, and do your research.

If all else fails, click here to see a list of bloggers that I trust to give accurate, up-to-date, scientific information regarding Celiac Disease. Many of those people also travel extensively with Celiac Disease, so they are good as a travel resource as well.

Be safe, be healthy, be happy. It’s possible to do it all with Celiac Disease, and it’s up to those of us who are a little more visible in the community to help our fellow Celiac peeps live a better life. Celiac Disease is not a death sentence. It can be ugly, and I think more bloggers need to show that side of it, but it can be pretty darn amazing too. I’ve met the most wonderful people through this community, and I wouldn’t change it for the world.

Stepping off the soapbox now, but I’m reserving the right to step back up if needed.

Cheers,

Michelle Brazeau

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