#55: The Questions I Wish I Had Asked My Doctor Sooner (About Celiac or Gluten Intolerance)
When I was first navigating celiac disease and gluten intolerance, I trusted that my doctor would tell me everything I needed to know. But looking back, there are so many questions I wish I had asked sooner — questions that would have saved me time, stress, and unnecessary symptoms.
Today, I’m sharing the questions I wish I had brought to my doctor earlier, so you can feel more informed, more confident, and better equipped to advocate for your health. Stick around until the end, because I’ll share the question that completely changed how I approached my care.
Let's Recap: The Questions I Wish I Had Asked My Doctor Sooner
Why Celiac and Gluten Testing Can Feel So Confusing
Getting a clear diagnosis for celiac disease or gluten intolerance is rarely a straight line. Many people start by trusting that a “normal” lab result means everything is fine, only to keep feeling foggy, bloated, anxious, or exhausted. The challenge is that different tests measure different things, and timing matters.
Blood work looks for antibodies, not intestinal damage. Biopsies look for damage, but they can miss patchy areas or early healing. Understanding which tests were ordered, how they work, and whether a full panel was run can save months or even years of confusion. It also gives you the language to advocate for yourself and ask for a specialist when needed, instead of staying stuck between symptoms and uncertainty.
Gluten Exposure Before Testing Matters More Than Most People Realize
One of the most overlooked factors in accurate testing is gluten exposure before labs or biopsies. Both blood tests and biopsies are most reliable when you are eating enough gluten for long enough to trigger an immune response.
If you removed gluten because you felt better, your body may stop producing antibodies and begin healing. That can lead to false negatives. This does not mean your symptoms were imagined. It means the test did not have the conditions it needed to detect the problem.
Because doctors vary widely in celiac expertise, it helps to arrive prepared. Ask questions like:
How much gluten should I eat before testing, and for how long?
Which antibodies are included in the blood panel?
How many biopsy samples will be taken, and from which locations?
Precision at this stage can prevent years of misdiagnosis and frustration.
Healing Is Uneven and That Is Normal
Healing does not happen all at once. Some symptoms, especially digestive issues, may improve within days or weeks of going strictly gluten free. Other symptoms take longer.
Neurological issues like brain fog, tingling, or numbness, along with skin conditions and mood changes, can lag as the nervous system, skin, and hormones recalibrate. Setting expectations with your doctor is key. Talk through what should improve first, what may linger, and how progress will be monitored.
It is also important to check for common nutrient deficiencies associated with celiac disease, including iron, vitamin D, B12, folate, and calcium. Low B12 can contribute to neuropathy and brain fog. Iron deficiency can drain energy. Poor calcium and vitamin D absorption can impact bone density, sometimes years before diagnosis. Request labs so you are not guessing.
Cross Contact Is Not a Small Detail
Cross contact is another critical piece that is often downplayed. Crumbs matter. Shared toasters, wooden spoons, scratched cutting boards, and other porous or worn tools can hold trace gluten.
Eating out requires clear conversations about prep surfaces, shared fryers, and kitchen practices. Enzyme products cannot cure a gluten exposure, but some people find they help reduce symptoms from minor cross contact. Talk with your clinician so these are used thoughtfully, not as a safety net for risky situations.
Working with a celiac-savvy dietitian can be invaluable. They can help you audit your kitchen, replace high-risk tools, and build a plan for eating out with confidence while still enjoying your social life.
When You Are Strict but Still Feel Unwell
If you are being careful and symptoms persist, it is time to widen the lens. Other food sensitivities can closely mimic gluten symptoms. Common culprits include soy and FODMAP foods such as apples, onions, and certain legumes.
A structured elimination and reintroduction approach, like low FODMAP, can reveal triggers without guesswork. Track symptoms carefully and bring detailed notes to your appointments. Notice whether migraines, rashes, fatigue, or IBS-like flares line up with specific foods or timing.
This is not about restriction for its own sake. It is about clarity and getting your life back. When progress stalls, ask the question that often unlocks answers:
If I am doing everything right and still feel bad, what else should we explore?
Create a Follow-Up Plan So Care Does Not Stall
Finally, set a clear follow-up schedule. Agree on when labs will be repeated, how often vitamin and mineral levels will be reviewed, and when to check in with gastroenterology versus primary care.
Healing is not a one-time milestone. It is a process with feedback loops. With the right questions, you move from reactive to proactive. Testing becomes clearer, restaurant experiences become less stressful, nutrient levels stabilize, and expectations align with how your body actually heals.
Advocacy is not confrontation. It is collaboration. The more precise your questions, the better your care team can help you feel well and stay well.
