We need more focus on the disease and less on the diet

enough about gluten free

Did you know that today is National Gluten-Free Day? No really…it’s a thing. So what is on my FB and IG feeds, where I follow a lot of folks/groups with celiac disease? Same as every other day: food, food, food and more food. Except today there are many “promotions” on food to celebrate our special day.

Why do I bring this up, besides the fact that I’m an open book? I went to the dentist a few weeks ago with some discomfort in one of my molars (I swear this is relevant). Turns out I had a fractured tooth. It needed to be extracted (for $6,000 dollars but don’t let them talk you into things you don’t need; it eventually cost me $495) and my appointment was yesterday. As I was sitting in the chair post Novocain and pre-extraction, I decided to share on my FB page where I was and asked if anyone out there with celiac disease had dealt with fractured teeth.

Feeling Comfortably Numb

Thinking I might here crickets back, I checked my phone after my yanking and definitely not crickets. As of right now, the post has gotten 152 comments, most of which are from people who have dealt with major teeth issues. So why aren’t people talking about this? Why do all of the GF influencers (puke) do bullsh*t posts about “what I ate today” or the “latest pizza joint that you just have to try” or worse yet pushing bullsh*t pills that will help you with your celiac disease?

Two reasons actually. One…they’re soulless creatures who get paid to post crap like this. And two…fractured teeth aren’t sexy. Food is. Try posting a pic of a gaping hole in your mouth and you might get a few views. But gluten-free brownies with only one ingredient??? Click, click, click.

And look…I get it. The gluten-free diet is indeed a huge part of our disease. And it is the ONLY treatment. But how many times on your social media feeds do you see posts about the disease itself? About how serious it is? About how debilitating it can be? About how low the diagnosis rate is? Of how the medical community has failed us?

I do think this is one of the reasons my blog resonated with people from the beginning. This is my 777th blog post (holy crap!!) and I have written maybe 20 articles on the diet. My focus has always been on the disease, from all perspectives (social, emotional, physical, etc.) It’s also why I don’t have ads on my site or my app. It’s also why I created the Faces of Celiac Disease, so you can see real people with a real disease.

So on this National Gluten-Free Day, instead of posting your favorite recipe, how about you share something about celiac disease so we can continue to spread awareness and let people know that we are more than the food we eat.

Dude Note: I saw on IG yesterday that someone translated my Symptoms of Celiac Disease infographic. Now THAT’S what I’m talking about.

celiac disease symptoms

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15 thoughts on “We need more focus on the disease and less on the diet”

  1. I have had poor teeth my whole life. Lots of fillings, crowns, root canals.
    When I bring up celiac as the cause at the dental office they just smile and pat me on the head.

  2. I started focusing on anemia again. I’ve been that way for 30 years, but every time I go talk to a doc it’s the same thing… just TRY Ferrous Sulphate again. And I got fed up with it. It makes me SICK, so the answer is NO. In the past 10 years or so I noticed some new Iron pills have entered the testing phase. One is called NovaFerrum, which I tried and it didn’t give me stomach chaos. I also tried Ferrous Fumarate which not only didn’t give me stomach chaos, but it stopped my skin itching in about 36 hours. OMG it was heaven. So I’m sticking with that one. I’m not claiming this will work for anyone else, just sharing.

    By this point (several weeks now), my feet are un-numbing, I’m feeling stronger and less like every action requires a major act of self motivation. Also way less anxiety and better sleep. I’m unable to sleep well, and have had sleep issues for about 15 years. I’m sleeping much better.

    I mean…. I always knew this was a problem. But the steadfast refusal of any doctor to look at any alternatives to the one poisonous solution… it wore me down to the point where I stopped looking for answers and just decided to eat liver and red meat and stick to that kind of iron supplement. Which was like attempting to solve a dehydration problem by licking dew off of individual blades of grass. Sure if you were healthy some dew would just keep you healthy. But if you’re dehydrated, it doesn’t do much.

    So the thing I’d like to share is my discovery about the connection between iron deficiency and anxiety. Look into it, talk with others, with professionals, etc… it might help you cope better to know that connection, if anxiety is happening with Celiac for you.

  3. Thank you for this post. Also so sorry you are dealing with teeth issues. I’ve had hair issues, teeth issues, bone issues and peripheral neuropathy issues. I think it is a two-fold problem: there isn’t enough focus on the disease, and the focus that is placed on the gluten free diet doesn’t do enough to address the areas where most celiacs experience difficulty (i.e. I get the impression that the majority of people writing about what is safe for a Celiac, when they mention cross contamination, are not well educated on the issue). I’ve been strictly adhering to the diet for years, but I can’t adhere 100% if medication companies only offer vague promises of gluten free with lots of caveats, if food suppliers do the same, and often rely on loopholes (like products like meat and produce being magically gluten free even if they encounter a mound of flour on their way to the shelf), to say nothing of more difficult products like coffee and even toothpaste. The problem in my mind with the way the diet is discussed is these problems, which are many and enormous, are glossed over like they aren’t an issue (and it wasn’t even that long ago that something like 5-10 percent of products labeled gluten free in supermarkets had gluten in them: I doubt we’ve improved that much since).

    But more to your point, not enough attention is paid to the disease itself. Particularly monitoring it closely to help us avoid teeth issues and other ailments. If doctors tested us more regularly for antibodies, if they checked our bloodwork more frequently for vitamin deficiencies, etc we would have a better chance at both nipping these things in the bud (i.e. identifying the source of a problem) and treating them as they arise (if I at least know I need B vitamin shots, that is something I can do to help improve my health).

    I have both crohns and celiac, and quite frankly, as bad as the crohns is, it doesn’t cause me the level of headache and uncertainty that celiac does. And with celiac you always feel personally responsible when anything bad happens to you (“I wouldn’t be losing my hair if I just found out what was getting into my food that is causing problems!”).

    I am glad you brought up influencers because I really do think there is a problem there, and I think too many influencers are really just hawking products. I’ve been searching for a reliably gluten free coffee brand for ages (and by gluten free I don’t mean no gluten ingredients but totally free of any cross contamination). If you google any article on gluten free coffee, they are absolutely useless. And no one even gets into things like who has what kind of certification. They seem to be written as a way of reassuring people to buy coffee and are filled with a glib optimism that I’m just not looking for when I am trying to control my celiac in order to get my health in check. I want serious journalism. I want people who will look at things like are any coffees actually certified, if not do they at least have written statements from their suppliers attesting to no cross contamination, etc. You don’t see anything like this with articles on gluten free coffee, gluten free toothpaste, gluten free whatever. And I think this is pretty directly connected to the lack of coverage of the disease you are pointing to because obviously many of our problems are probably related to the gluten free diet, in our society at least, not truly being gluten free 100% of the time. And we would have more awareness of that if we paid greater attention to the disease of celiac and monitored the progress of patients with celiac disease better.

    It is incredibly frustrating, so thank you for this article

  4. Heather Henriksen

    Great post as usual! None of my friends want to hear about my joint pain or neuropathy in my feet. Those symptoms sound like old people stuff! They can’t relate. Everyone wants to talk about food.

  5. I just read this post yesterday, and then today at my dental appointment I was told I have two cracked teeth:( So I can join the un-fun celiac cracked teeth party. Woohoo!
    But, seriously, it’s very demoralizing, so it helps to know I am not alone.

  6. Oh, Dude. Grasshopper. Is there anybody in there? Just nod if you can hear me. Decades of pica ruined my teeth. Unexplained anemia. Ice was my vice. When I started to chip the porcelain off of my many crowns…and the bridge…I was finally diagnosed with celiac. That gluten-free diet? I do believe it’s working-good! I CAN put my finger on it now!
    Thank you for your refreshing messages…you little whippersnapper.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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