Today is National Celiac Disease Awareness Day. This week's Self-Care Sunday was about trusting what your body is telling you and expecting to be heard — and celiac disease might be the clearest example there is of what happens when you aren't.
Most people file celiac disease somewhere near gluten intolerance, which sits somewhere near a dietary preference. That filing is wrong, and the distance between the two is the reason so many people spend years unwell without an answer.
Celiac disease is autoimmune. When someone with the condition eats gluten — a protein in wheat, barley, and rye — their immune system attacks the lining of their own small intestine. Over time, that damage affects how well the body absorbs nutrients from anything they eat. It affects roughly one in a hundred people worldwide. A large share of them have no idea.
Why it gets missed in us
For decades, celiac disease was understood as something that happened to people of Northern European descent. That assumption made its way into medical training and stayed there long after the research moved on. More recent work has found celiac disease across populations that were once thought to be largely unaffected, including Black Americans — but the older assumption still shapes who gets offered a test and who doesn't.
Then there's the symptom problem. Celiac has a reputation as a stomach condition, and when it doesn't present that way it gets attributed to something else:
- Iron-deficiency anemia that won't resolve. One of the most common presentations in adults, and frequently treated with supplements alone without anyone asking why absorption is failing.
- Fatigue. The kind that rest doesn't fix, easily attributed to stress, work, or motherhood.
- Skin. An intensely itchy blistering rash called dermatitis herpetiformis, often on elbows, knees, or the scalp, and regularly mistaken for eczema.
- Reproductive health. Irregular cycles, recurrent miscarriage, and unexplained infertility all appear in the literature as possible presentations.
- Bone, joint, and neurological symptoms. Early osteoporosis, joint pain, headaches, numbness or tingling in the hands and feet.
- Digestive symptoms that look like something else. Bloating, diarrhea, constipation, and pain frequently get labeled IBS — sometimes for a decade — without celiac ever being ruled out.
And there's one more layer specific to us. When a Black woman reports dairy or digestive trouble, lactose intolerance is often the assumed explanation, and the conversation ends there. It's a reasonable first thought and it's frequently correct. It's also a convenient place to stop looking.
The one thing to know before anything else
If you suspect celiac disease, get tested before you remove gluten from your diet.
This is the single most consequential thing in this article. Celiac testing works by detecting your immune system's reaction to gluten. If you've already stopped eating it, that reaction quiets down, and the tests can come back negative even in someone who genuinely has the condition. People do the sensible-seeming thing — cut it out, feel better, mention it at a checkup months later — and end up unable to get a clear answer without deliberately eating gluten again for weeks first. That process is miserable, and it's avoidable entirely by testing first.
So if this article is making you think, the order is: talk to a provider, get tested, then change your diet based on what comes back.
What testing actually involves
It usually starts with a blood test looking for specific antibodies — the tTG-IgA is the common first-line one. It's an ordinary blood draw.
If that comes back positive, the confirming step is typically an endoscopy with a biopsy of the small intestine, done by a gastroenterologist. It's a short outpatient procedure under sedation.
Worth knowing: a negative blood test isn't always the end of the story, particularly if you were eating little gluten beforehand or have an IgA deficiency, which is itself more common in people with celiac. If your symptoms persist and the first test was negative, that's a reason to keep asking, not to stop.
Celiac, sensitivity, and allergy are three different things
These get used interchangeably and they aren't the same:
- Celiac disease is autoimmune, causes measurable intestinal damage, and requires strict lifelong gluten avoidance. Small amounts matter, including cross-contamination.
- Non-celiac gluten sensitivity causes real symptoms without the autoimmune damage or the antibodies. It's diagnosed by ruling celiac out first, and tolerance varies from person to person.
- Wheat allergy is a classic allergic response to wheat proteins, can involve hives or breathing symptoms, and is diagnosed and managed differently again.
The reason this matters practically: these three carry different levels of strictness and different long-term risks. Treating them as one blurry category means some people are being far more restrictive than they need to be, and others are being far less careful than their diagnosis requires.
The honest caveat
Gluten-free is not a health upgrade for people who don't need it.
There's a large market built on the suggestion that gluten is inherently inflammatory or fattening, and the evidence doesn't support that for people without celiac disease or a diagnosed sensitivity. Many gluten-free packaged products are lower in fiber and B vitamins than what they replace, and they cost noticeably more. Cutting a whole food group without a reason tends to narrow your diet rather than improve it.
For someone with celiac, a strict gluten-free diet is the treatment and it's not optional. For everyone else, it's an expense with no particular payoff. Both of those things are true at once, and the marketing around this topic tends to obscure one or the other depending on what's being sold.
If you're going to raise it with a provider
The advocacy piece from Self-Care Sunday applies directly here.
Bring a written history. How long the symptoms have been going on, what's changed, what's been tried. Include the things that don't seem related — the anemia, the rash, the fatigue, the cycle changes. Those connections are the point.
Ask the specific question. "Can we test for celiac disease?" is a clearer ask than describing symptoms and hoping. If anemia is part of your picture, "can we look at why I'm not absorbing iron?" is a good companion question.
Mention family history. Celiac runs in families. A first-degree relative with it raises your odds considerably, and it's a strong reason to test even without dramatic symptoms.
If you're dismissed, ask again or ask someone else. A decade of IBS with no investigation is not a diagnosis. You're allowed to want a reason.
The through line
Celiac disease is treatable. Not managed indefinitely, not endured — treatable, with a diet change that stops the damage. What makes it costly is the years spent before anyone names it, and those years are usually the result of a condition being looked for in some people and not others.
If something in this article sounded like your last ten years, that's worth a conversation and a blood test. Keep eating gluten until you've had it.
This article is for informational purposes and is not medical advice. It cannot diagnose any condition. Talk to a qualified healthcare provider about testing, symptoms, or any change to your diet — and do not begin a gluten-free diet before celiac testing, as it can affect your results. Full disclaimer.
