Spoonie | My Toxic Relationship With Gluten

I used to be one of those people who’d roll their eyes when someone would order something “gluten-free” at a restaurant. I used to think, “they’re just trying to be trendy . . . like green juice, oat milk lattes, and avocado toast.” I couldn’t have been more wrong.

Fast-forward a few years and some pretty serious health scares, and I can honestly say that not everyone who asks for “gluten-free” does it to be trendy or because they’re avoiding traditional carbs.

It took me a long time to figure out gluten was the culprit behind many of my GI flares and I’ve been wanting to talk about this for a while, because for the longest time, I felt really alone dealing with it.

Initially, I thought dairy was the problem . . . and sure, dairy can do a number on the GI tract. According to the NIH, nearly 65% of adults develop some kind of lactose intolerance after childhood. But even when I cut out dairy from my diet, it didn’t help alleviate symptoms like: constant nausea, projectile vomit, and inexplicable “sticking” of foods at the back of my throat.

I saw nearly a dozen different specialists to try and figure out why my flares were getting worse these last few years, but it wasn’t until I saw this sports chiropractor, of all people, that I finally realized I had to kiss gluten goodbye, for good.

SO WHAT EXACTLY IS GLUTEN? It’s a mix of protein (prolamin and glutelin) that helps food maintain its shape. While it doesn’t provide any additional nutritional value, it is found in SO MANY foods, most notably: barley, rye, and oats.

My knee-jerk reaction when my doctors told me gluten was the issue was: “okay, I just won’t eat barley, rye, and oats.” Easier said than done. I had no idea how many places gluten was appearing in my diet, like:

-in alcohol. Beer is an obvious trigger because it’s literally malted barley or wheat, but I had no idea other kinds of drinks can have gluten. For example, vodka is typically GF (gluten-free), but a lot of flavored vodkas are not GF because they have flavor ingredients that have gluten.

-in cereal, bread, pasta, cake, cookies, crackers, and chips.

-some sodas, teas, coffees, and flavorings (pro tip: check ingredients in creamers and sweeteners . . . or bring your own).

-sauces and dressings (soy sauce and salad vinaigrette are the two I usually have to ask about).

-and last, but certainly not least, COSMETICS! Lipsticks are notorious for having gluten in them (albeit some have more than others); you can check by looking for things like “wheat germ” or “barley extract” in the ingredients. I’m sure you’re probably shaking your head, but hear me out. Women, on average, consume anywhere from three to seven pounds of lipstick in a lifetime. Think about it: you’re biting your lip, reusing cups that have lipstick on them, reapplying 24/7 . . . I was pretty blown away by this stat, especially because I’d never considered to look for GF options in anything but food. The amount of gluten in makeup is trace relative to a giant bowl of regular pasta, but still, it all adds up when it comes to inflammation.

WHAT DO THE SYMPTOMS LOOK LIKE? Symptoms can vary, but mine were textbook gastrointestinal inflammation, like: bloating, constipation, diarrhea, major fatigue (this was a red flag for my doctor), vomit (which can easily turn into a hospital visit if I get too dehydrated and/or blood comes up, which was the case last night . . . luckily the bleeding stopped, so I didn’t have to brave a hospital in the middle of COVID).

Gluten can stay in your system for up to three months, which is why any slip-ups in diet will prolong inflammation and ultimately delay any kind of relief.

There is a spectrum of allergies, intolerances, and autoimmune conditions related to gluten. Some people have NCGS (non-celiac gluten sensitivity), which is usually when you get symptoms after eating gluten, but you don’t test positive for a wheat allergy or Celiac disease. Some people have a wheat allergy; it’s a top eight allergen in the US. If you have a wheat allergy though, eating GF doesn’t guarantee the food doesn’t have wheat (like, processed meats can have wheat in them . . . I had no idea!). This is a good resource I found with a breakdown of things that can have wheat, as well as things that are safe to eat if you have a wheat allergy.

Then you have, DRUMROLL, Celiac disease, which is an autoimmune disorder where inflammation occurs, primarily in the small intestine, following consumption of wheat, rye, or barley proteins.

Doctors can screen for Celiac with the tTG-IgA test (you can read more about it here). While this test is helpful, it is not conclusive if you definitely do/definitely do not have Celiac.

I was screened a few years ago for Celiac genetic markers, but my test came back negative. What my doctor didn’t tell me was that the test could come back with a false negative if I wasn’t eating much/any gluten at the time, which I wasn’t, because I was trying to deal with an onset of SIBO (you can read about that diagnosis and the $2k treatment here).

When I got retested, I got different results (obviously), but positive test results, years of inconclusive endoscopies, colonoscopies, biopsies, and a smart pill test that said my small intestine was pretty much non-functional didn’t really make a diagnosis that picturesque “ah-ha” moment.

Now here’s where I get into why my relationship with gluten is toxic . . . because I haven’t wanted to say any of this out loud. Because it’s all well and good to have GI issues that are largely out of your control (gastroparesis, IBS, SIBO, etc.), but it’s a different feeling when it’s food related and my Celiac flares are a direct result of my binging on foods that have gluten, or because I’m not careful when I eat out.

Let that sink in for a minute.

I’ve spent the better part of the last eight years in and out of hospitals with a myriad of health issues, and this is the first diagnosis that I’ve received that’s largely in my control. On one hand, it’s pretty cool, I can control how much I let this impact my health by what kinds of food I put in my body. On the other hand, IT’S MY FAULT IF THIS CONDITION AFFECTS MY LONG-TERM HEALTH BECAUSE OF THE KINDS OF FOOD I PUT IN MY BODY.

I’ve been putting off talking about this because I was really angry when the doctors told me the best, and pretty much only, treatment is to celiac is to cut out gluten completely.

No magic pill to take. No special surgery to schedule. Just cut out gluten.

I thought I could outsmart my body and keep eating gluten, even if it was just a few Cheez-Its here and there.




Do not pass “GO.”

SO HOW DO YOU EAT OUT LIKE A “NORMAL” PERSON? The short answer is it’s not easy, but once you know what ingredients to look out for and what questions to ask, it gets easier.

I should preface that I haven’t perfected the GF lifestyle. I try my best, but invariably I will accidentally have something that I shouldn’t. I am more careful than when I was initially diagnosed because my flares just get worse, faster, and a couple Cheez-It’s aren’t worth aspirating on vomit and feeling distended for days on end.

That being said, these are my holy grail tips for eating out GF:

-have some tried and true restaurants (they put GF on their menu, are careful with how they handle ingredients in the kitchen, and can provide a full list of what’s in a dish upon request).

-avoid restaurants that have few or no GF options . . . it’s hard, but walking out of a restaurant so you don’t have to order a plain salad (unless that’s your jam) is better than being miserable while everyone else enjoys their food . . . find a spot that can accommodate what you can eat.

-ask the waiter questions, and if he/she doesn’t know, ask to speak to the chef: what kind of oil is it cooked in? can I substitute something? do you have anything that’s gluten-free? do you know if there’s any possibility of cross-contamination?

-get foods plain, without any dressings or sauces. One time at a bar, I just ordered grilled chicken with olive oil and steamed veggies . . . not the same as sweet potato fries and pizza, but it worked and I didn’t get sick that night.

Ingredients to look out for/can be indicative of gluten and/or gluten cross-contamination: dextrin, modified food starch, malt, malt vinegar, flour, soy sauce, food starch, natural or artificial flavoring, and caramel coloring.

Anyway, long story short, once I cut out gluten I noticed a MAJOR shift in things like: joint stiffness, brain fog, and overall sluggishness. I didn’t think I would notice that much of a difference by cutting out gluten, but it was a noticeable difference. I thought cutting out gluten would be more devastating, because I love pasta and bread . . . but surprisingly there are lots of good GF (gluten-free) substitutes out there. Don’t get me wrong, there are TONS of gross ones (looking at you, frozen GF bread from Whole Foods) . . . but there are also a lot of good alternatives.

I’m slowly putting together a list of my favorite places to shop and eat GF, but until then, here are some good resources:

  • a great app for restaurants near you that are GF
  • another app, like Yelp, but with ratings by diners with allergies
  • an app that can scan food labels and let you know about latent ingredients
  • website on celiac with information on food certifications, recipes, and more

Phew. That was a lot. Another GI diagnosis, another day. Here’s hoping being more diligent about my gluten intake helps.

Until Soon,


Author: 2LWithIt

Spoonie Adventures in Books, Beauty, & Bullshit I'm a twenty-something year old recent law and business school grad living with a chronic health condition. Follow along on my shenanigans.

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