GF & Still Sick?
Did You Go Gluten-Free and Still Don’t Feel Great? Here’s What Helped Me
When I was first diagnosed with celiac disease and went gluten-free, I expected to feel better almost immediately. After all, I was cutting out the very thing that had been causing so many problems for years. But instead of the instant relief I anticipated, I found myself still struggling with a host of symptoms—digestive issues, fatigue, and brain fog, to name a few.
It was incredibly frustrating. I was doing everything "right" by following a strict gluten-free diet, but my body wasn’t healing as quickly as I had hoped. If you’re in the same boat, you’re not alone. Healing from celiac disease, as my specialist from the Celiac Disease Center at Columbia University Hospital explained, can take time—lots of time. According to her, it can take anywhere from 1.5 to 3 years for your body to fully heal, even after going gluten-free.
So, if you’re still not feeling great after eliminating gluten, here’s what I’ve learned and what’s helped me along the way:
1. Reintroducing Foods & Testing for Other Sensitivities
Going gluten-free can sometimes create a false sense of healing. Once I cut out gluten, I didn’t immediately start feeling better because my gut was still inflamed and sensitive. After some time, I realized that it wasn’t just gluten that was causing issues—other foods might have been contributing as well.
I started eliminating additional foods that could cause irritation, such as dairy, soy, and high-FODMAP foods. While this may seem restrictive, it helped me identify other food sensitivities that were lingering beneath the surface.
What helped: Under the guidance of my healthcare provider, I went on an elimination diet to test for intolerances. Reintroducing foods one at a time allowed me to pinpoint triggers. Working with a dietitian who specialized in celiac disease and food sensitivities was invaluable during this process - who knew gluten free oats can cause some celiacs discomfort?! Once I cut out the foods that were hard on my stomach, like oats and sesame, I was able to reintroduce other things I realized I am fine eating like dairy!
2. Testing for SIBO (Small Intestinal Bacterial Overgrowth)
Even after eliminating gluten and some potential food triggers, I wasn’t seeing the improvement I expected. That’s when I was advised to get tested for SIBO (Small Intestinal Bacterial Overgrowth), a condition that can often occur in people with celiac disease, due to the damage in the small intestine and its role in nutrient absorption.
SIBO can cause bloating, gas, diarrhea, and other digestive issues that may feel very similar to the symptoms of gluten exposure. Unfortunately, this condition is often overlooked as people focus solely on gluten, but it’s crucial to test for it if you're still experiencing gut-related symptoms.
What helped: After getting a breath test, I found out I did indeed have SIBO. After a course of antibiotics and dietary changes, I felt a huge improvement in my digestion. I was able to tolerate more foods without feeling bloated or gassy.
3. Testing & Monitoring Vitamin Deficiencies
Celiac disease can cause significant malabsorption of nutrients due to damage to the small intestine, so even if you’re eating a healthy gluten-free diet, your body might not be absorbing vitamins and minerals effectively. I was shocked to learn that I was deficient in several key nutrients, including vitamin D, iron, and B12.
It’s important to get regular blood tests to monitor your vitamin levels, especially in the first few years after a celiac diagnosis. If you’re deficient in certain vitamins, it’s crucial to supplement them in order to avoid long-term health issues like osteoporosis, anemia, or nerve damage.
What helped: I started supplementing with the vitamins I was deficient in, as well as working closely with my doctor to track my levels over time. Once I started taking the right vitamins, I noticed a marked improvement in my energy levels, mood, and overall well-being.
4. Give Yourself Grace—Healing Takes Time
One of the most difficult lessons I’ve learned on this journey is patience. As my celiac specialist from Columbia told me, “It takes 1.5 to 3 years for your body to heal.” That was a hard pill to swallow, but understanding that healing is a gradual process has been crucial in managing my expectations.
When I first went gluten-free, I expected everything to improve immediately. However, my gut and immune system had been compromised for years, and they needed time to regenerate. The small intestine’s villi—the tiny finger-like structures responsible for nutrient absorption—don’t just grow back overnight.
What helped: Giving myself grace during this process has been key. It’s easy to get frustrated when you’re still struggling with symptoms, but recognizing that healing takes time helped me adjust my mindset. I had to be kind to myself and allow my body the time it needed to recover fully.
5. Working with a Celiac Specialist
While general advice from doctors and online resources can be helpful, I found that working with a celiac specialist who truly understands the condition was a game-changer. A specialist will not only monitor your progress but will also help you navigate the complexities of the disease—like testing for SIBO, dealing with nutrient deficiencies, and managing other autoimmune conditions that often coexist with celiac disease.
What helped: Finding a celiac specialist who could provide personalized care and support was invaluable. With their expertise, I felt more confident in my treatment plan and knew I was on the right path.
6. Your Health Is Worth the Effort
If there’s one piece of advice I can give you, it’s this: Your health is worth the effort. Yes, the gluten-free lifestyle can be tough, and yes, it takes time and patience to heal—but you’re doing it for your long-term health. It’s easy to feel discouraged when things aren’t improving as quickly as you expect, but know that you’re making the right choice for your body.
Healing doesn’t happen overnight, but with the right guidance, the right tests, and a lot of self-compassion, it will happen. Trust the process, and give yourself the time, grace, and patience you need to heal.
Final Thoughts
If you’re still not feeling great after going gluten-free, know that you’re not alone. It’s normal for the body to take time to heal, and sometimes there are underlying issues that need to be addressed—like SIBO, nutrient deficiencies, or other sensitivities. With the right tests, a holistic approach to healing, and plenty of patience, you can get back to feeling your best.
Give yourself the time your body needs, and remember—you’ve got this. Healing may take time, but you’re on the right path.