Tips for freshly diagnosed celiac-havers
Someone I knew asked me for advice after getting diagnosed with celiac. I gave her some. I might as well share them with you as well!
I am not a doctor, and not your doctor, I'm just some guy with celiac disease. Ask an actual doctor for help with medical decisions. I'm in the northeastern United States, so you might have to go hunting for equivalent resources if you live elsewhere.
Are you done with testing?
If you had a tTG-IgA blood test with an elevated result, or a doctor just told you you have celiac, but you have not gotten a biopsy via endoscopy to confirm your diagnosis, WAIT! You may not want to stop eating gluten quite yet. You have to be eating gluten for the biopsy test to work.
It is not fun to stop eating gluten, start feeling better, and then have to start eating it again just to prove that you really have celiac disease.
Your choice in this area is personal. If you know you're going to have to wait years to get an endoscopy, it would probably be healthier and more pleasant to stop eating gluten now and then do a "gluten challenge" for a few weeks before your endoscopy.
If it's unlikely you will ever get an endoscopy (too expensive, inaccessible, phobia, etc), there's no point in waiting for something that may never come -- just stop eating gluten now.
But if you can schedule an endoscopy for a month or two from now, it's probably best to keep eating gluten until the endoscopy. Sorry.
Please eat food. Like, enough food.
The most important tip I got early in my diagnosis is that if you stop eating gluten and you start feeling crummy -- dizzy, cranky, tired, etc -- it's not because you're going through "gluten detox" or some shit. It's because you're hungry!
It's easy to accidentally start eating way less when you start eating gluten free. A celiac diagnosis can make you want to avoid eating because food feels scary and stressful. Cutting a major ingredient from your diet without knowing what to replace it with can also leave you undernourished.
You really need nourishment when you are recovering from celiac! Your body need energy from food to use on healing your intestines. If you've lived with celiac for a long time, you probably have vitamin deficiencies you're trying to bounce back from. The emotional difficulty of adjusting to a new diagnosis is also much easier to face if you're not starving.
All of this advice applies equally regardless of body size. Yes, even if you are very fat. If you're hungry, eat.
Where to find information about gluten-free food
The gold standard for basic celiac info is celiac nonprofits. There's a ton of info about celiac disease and the gluten free diet on their websites. I recommend:
Celiac Disease Foundation
You know what's not a legitimate celiac nonprofit? Gluten Free Society. Do not listen to anything GFS or its founder Peter Osborne have to say. Osborne is not an actual doctor, nor is he doing actual nutrition science. He is a chiropractor (i.e. quack) so bad that his state's board of chiropractors threatened to revoke his license. Don't let anyone tell you celiac means you can't have corn!!! Truly, wtf @ this guy.
Google's AI summaries for searches like "Is XYZ food gluten free" are often inaccurate (because they pick up sites like GFS). I always click through to the source to be sure. "Is XYZ food celiac safe" sometimes gives more useful search results.
I also like this presentation "I Have Celiac" for a super in-depth guide to having and living with celiac. The OP made it to show to loved ones to explain their deal, but it's so thorough that I found it helpful for myself when I got my diagnosis.
I want to buy food that's safe for celiac...how do I do that?
You should be able to find gf food at any supermarket. The selection of baked goods and processed foods may be lacking, depending on where you live, but produce, raw unmarinated cuts of meat, and other whole foods like milk and eggs are generally safe even if not labeled gf.
A lot of supermarkets have an indicator on the price labels to help you -- for example, at Stop and Shop, the labels on the shelf have an orange circle that says "gf" in it under foods that are gluten free. It's best to check the packaging too, since Stop and Shop sometimes gets it wrong!
Something that says "gluten free" or "certified gluten free" on it is safe for celiac*. Something that doesn't say "gluten free" on the packaging may also be safe, so long as it also doesn't contain wheat, barley, or rye, or have a wheat allergy warning under the ingredient list. Here are some tips for what to look for on ingredient labels.
Labels can get real complicated real fast, so just use your best judgment. It's okay if you don't get it right 100% of the time. The goal when living with celiac is to reduce gluten exposure as much as possible, not to hermetically seal yourself in a deep well where a single molecule of gluten can never possibly reach your tongue. You, and only you, get to decide how much exposure risk you're comfortable with.
My favorite grocery store post-diagnosis is Wegmans. My nearest one is a bit of a hike, so I don't go that often, but it's such a treat when I do. Wegmans has a huge gluten free aisle with gf staples and fun snacks, plus lots of food items that can be harder to find gf, like fresh pasta and baked goods.
I also like the online health food store iHerb for finding new gf snacks and ingredients. You can filter the whole store by dietary needs, so you can also find gf skincare/makeup items and supplements if you want. I have a discount link for 20% off: https://secure.iherb.com/rewards/rewards-program?rcode=DRO2876
The best way to find restaurants that can accommodate celiac is Find Me Gluten Free. It's essentially a gluten-free Yelp. People use the site/app to review of restaurants for 1) what cross-contact precautions the restaurant takes and 2) crucially, if the food was good!
Gf food can be expensive, ngl. The National Celiac Association has advice for how to save money on gf food, including a database of food pantries that set aside gf food for people who need it.
If you want to follow some people who Get It, I like:
Phil Hates Gluten (on IG, TT, and YT) has EoE (another gluten-related autoimmune condition). He reviews gf food and restaurants and makes silly videos about the gf experience.
Robyn's Gluten-free Living on YouTube has gf baking videos and advice about traveling, eating at restaurants, saving money on gf food, and more.
Here on Tumblr, @gluttonysansgluten and @certifiedceliac (and I would love more recommendations for celiac related Tumblr accounts!)
Having celiac is really hard. But it does get easier.
I felt overwhelmed and honestly kind of doomed when I got my celiac diagnosis. For the first few months I felt like I couldn't trust any food and I was going to be totally excluded at all social events forever. It sucked. But then I got a lot of practice figuring out which foods were safe for me, advocating for myself at restaurants and when my friends were planning get-togethers involving food, and now things are really not that bad. And I feel way, way less sick.
If you feel overwhelmed or don't know how to interpret the 1 million sources online telling you what's gluten free, I really recommend seeing a dietician. Your best bet is a weight-neutral or HAES dietician who mentions celiac somewhere on their website or online profile. You can generally count on those folks to give you practical information about how to live with celiac, as well as emotional support as you adjust to what is probably a pretty big and stressful change in your life and how you view yourself!
*Please do not talk about Cheerios on my post. Make your own.