Misdiagnosed with Gestational Diabetes & Type 2 Diabetes

Living in Belgium, Anna balanced her demanding career as a lawyer on top of motherhood, not realizing the next decade would be intensely frustrating while she battled for a proper diagnosis. 

The First Signs: Gestational Diabetes Misdiagnosis

Anna’s diabetes journey begins during her first pregnancy. Although she was young, healthy, and at a relatively lean weight, she followed the prescribed gestational diabetes protocol to a “T”: checking her blood sugar six times a day, a meticulous diet, and daily exercise. Her efforts paid off — she’s grateful she never needed insulin during her pregnancy. 

Her second pregnancy was nearly identical to the first: she failed the oral glucose tolerance test, received a gestational diabetes diagnosis, and managed with daily blood sugar monitoring, a meticulous diet, and regular exercise.

Fortunately, both children were born without any complications. However, her third pregnancy wasn’t as simple. Anna managed gestational diabetes throughout her pregnancy yet again, but this time something was different. 

Despite a strict low-carb diet and careful management, her blood sugar levels were much more volatile, spiking daily. 

“Even eating something as benign as aubergines would cause spikes,” she recalled. At five months pregnant, an endocrinologist started her on insulin. For Anna, insulin was just a temporary solution — something tied to pregnancy and nothing more.

Fast forward five months postpartum, Anna’s blood sugar level was dangerously high at 270 mg/dL — and she was losing weight rapidly.

“Your diabetes didn’t go away,” she was told. Her healthcare team blamed the dramatic weight loss on breastfeeding.

Anna was diagnosed with type 2 diabetes and told to manage her blood sugar with diet and exercise, certain she could reverse her diabetes naturally — a common path many people struggle with in their misdiagnosis journey. She could start medications after she finished breastfeeding. 

Living with the Wrong Diagnosis

Over the next several years, Anna did everything by the book to manage her so-called type 2 diabetes. She followed a strict low-carb diet, exercised regularly, and maintained an A1c in the low 6s — good, but not “normal” compared to a non-diabetic. She was frustrated, considering how hard she was working. On top of her efforts, she also simply didn’t feel well. 

“Why isn’t this working?” she often wondered. Her healthcare team's dismissive attitude added to her frustration. 

When she pointed out that her blood sugar spiked to 200 mg/dL after eating a sandwich, she was told by a nurse, “Oh, that happens to me, too,” as if it were normal.

A Breakthrough: The Power of CGM and Self-Advocacy

2018 Anna stumbled upon a life-changing technology: continuous glucose monitors (CGMs). These devices provide 24/7 glucose data, offering insights beyond what sporadic finger pricks could reveal. In Belgium, CGMs were reserved for insulin users, but Anna persuaded her doctor to let her buy one out of pocket.

The results were eye-opening. Foods that didn’t used to affect her blood sugar significantly were now causing extreme spikes. Even low-carb meals were causing chaos. She couldn’t explain it, but her diabetes was getting worse despite trying so hard with diet and exercise.

Meanwhile, she’d also started taking metformin — and type 2 diabetes medication that works primarily by telling the liver to produce less insulin. But it wasn’t helping. “Metformin isn’t working. What do I do next?” Anna posed to herself, considering the lack of support or concern from her healthcare team. 

“In my research on diabetes medications, I stumbled upon a small paragraph about LADA.”

LADA — Latent Autoimmune Diabetes in Adults — is a slow-progressing form of type 1 diabetes. It is often misdiagnosed as type 2. For Anna, her diligence in diet and exercise was just enough to manage her blood sugars in the earlier years of LADA, when she was still producing a significant amount of insulin. 

Fortunately, distinguishing between LADA and type 2 is easy—if your healthcare team is willing to perform bloodwork. Anna knew she needed to get screened for autoantibodies related to type 1 diabetes. 

“I asked my doctor to test me for the antibodies, but he had no idea what they were!” recalled Anna. 

The clinic’s lab didn’t offer antibody testing, so she was referred to the nearby university.

Antibodies develop when the immune system attacks and destroys the cells that produce insulin. In type 2 diabetes, autoantibodies are rare and unlikely; in type 1 diabetes, autoantibodies and c-peptide levels (which measure insulin production) are the most precise indications of the disease.

There are three stages of type 1 diabetes based on the presence of autoantibodies:

• Stage 1: Two or more autoantibodies but normal blood sugar.
• Stage 2: Two or more autoantibodies, abnormal blood sugar, but no symptoms yet.
• Stage 3: Symptoms show up, blood sugar is high, and insulin is a must!

Considering that 90 percent of people with type 1 diabetes have no family history of the disease, anyone at any age can get screened for autoantibodies. 

Thankfully, Anna was able to get the test done, but the results didn’t come quickly.

Finally, a Correct Diagnosis

After a month-long wait, the results were in: Anna tested positive for the antibodies associated with stage 3 of type 1 diabetes. 

“They told me I had to book a year in advance to see an endocrinologist,” recalled Anna. “but I emailed the endocrinologist directly, and he got me in very quickly. Today, he still says he will never forget the day he got my email explaining 11 years of being misdiagnosed.”

Eleven years after her first gestational diabetes diagnosis, she finally had a proper diagnosis.

The news brought mixed emotions. Relief at finally having answers was tempered by grief over the reality of a lifelong condition. She had spent over a decade fighting for her health, working so hard through intense lifestyle habits, and the nonstop stress this had brought into her life had become constant.

The new diagnosis was equally overwhelming. “Joining the ‘Type 1 club’ hit hard,” Anna admits. But she was determined to manage her condition on her terms. 

Finding Empowerment and Purpose

Today, Anna is more than just a survivor of a decade-long diagnostic odyssey—she’s an advocate and a guide. Now a certified nutrition counselor, Anna uses her personal experience to support others navigating the complexities of diabetes. She dove head first into studying nutrition and diabetes, eventually launching her own nutrition coaching company.

She emphasizes the importance of self-advocacy, education, and the transformative power of tools like CGMs and personalized nutrition.

Her story is a testament to resilience and the importance of listening to your body. Anna offered advice for those facing similar challenges: “Trust yourself. If something doesn’t feel right, keep asking questions. Your health is worth fighting for.”