Too much contradiction going on social media

If you're struggling to find gems in the mountain of information, this one is for you. Also, me too!

This is a topic I have been meaning to write about for a while. I am still not sure how to approach it, but here it goes.

The trouble with living with celiac disease is the amount of information you have to process for everyday living. Even ordering a coffee isn’t as simple as just getting a coffee. You have to ask about the sweeteners, syrups etc. that a coffee shop uses.

If you don’t have a condition like celiac disease, just imagine what grocery shopping might be like. I go to an aisle and look at all the ketchups. Before diagnosis, I’d just pick the one I always get or maybe check the price difference. Now, I go to a specific grocery store, because I have learnt that they carry it sometimes. Next, I stand in front of the aisle skimming for the small portion of a shelf at the bottom, with the hope that they will have it this time.

Many celiac dieticians on the internet are preaching: “It’s not difficult to live with celiac disease”. While I understand the sentiment, I don’t like the false hope that comes with it. I agree that we shouldn’t make it intimidating for people with a recent diagnosis. I disagree with the encouragement that non-celiac celiac dieticians on social media provide to people.

For example, recently, I saw a dietician demonstrating a “script” as she ordered from a Wendy’s drive-thru. She said their fries are gluten-free. But the question is, do they have a separate fryer just for fries? or do they change their gloves? If anyone has ever seen a fast-food kitchen working, it’s a high-speed environment. All the fryers are right next to each other. The crumbs from one colander fly over other fryers all the time. The trays are used interchangeably for all the food coming out of the fryers. All the people in the food processing chain will not be changing gloves for one order. Hell, everyone in the chain doesn’t even see the orders and notes on it. Most foods like fries, which are made in bulk, are ready to go even before you order.

Tell me, how am I supposed to order from a fast-food chain and feel confident?

It is easy to feel overwhelmed quickly at the moment of diagnosis. I can understand doctors and nutritionists trying to make people comfortable with the transition. Instead of helping people navigate the challenges, we are misleading them about the safety of certain foods. Admittedly, these challenges are difficult to navigate, but not impossible. Not overcoming these challenges have dire consequences which people may not realize until it’s too late.

It may feel like I am talking only about the problem, and not offering a solution. Honestly, I don’t think I have the expertise to offer a solution. Of course, it is easy to find problems and announce them in a blog. I do have some ideas which I can share openly, and encourage doctors and nutritionists to explore.

Here’s an idea: as soon as someone gets diagnosed, we can ease their transition to a gluten-free lifestyle into “milestones” or “phases”. The first phase could last a month or so, where they audit their kitchen and find replacement foods/recipes that they can eat. The second phase could be another month to make them aware of cross-contamination and related risks. The third phase could be about finding a community and traveling with the new constraints. And so on.

Currently, each of us struggles through with our own experience getting glutened multiple times throughout the journey. This could be a little help, if not more. This is not to devalue the support of the celiac community. The celiac community is incredibly supportive. I get instant responses when I ask anything in Celiac groups on Facebook or WhatsApp. However, people new to this lifestyle may not even have found the community.

The truth is that with the ease of access to information, there’s an ease of access to misinformation too.

I hope to learn if others feel anything similar to this. Please share your thoughts in the comments or emails.

Thank you for reading!