On not having gestational diabetes, continued

This post follows on from yesterday’s, in which I share the details of my own stressful reaction to failing a glucose challenge test for gestational diabetes in my second trimester of pregnancy. (I took this test twice, in week 24 and in week 28, and I did not pass either time).

After scouring the internet for information, I began scouring for testimony. It seemed the medical establishment was quite in agreement that gestational diabetes is real, affects mothers and babies, and can befall women of all backgrounds and body types. While there are risk factors for gestational diabetes, like high BMI and a family history of diabetes, many women without any of these risk factors were still diagnosed.

I began finding these women on the internet, and I was immediately gratified that they were as anxious and as pissed off as I was. They were runners, nutrition counselors, people who follow the paleo diet … many of whom failed the glucose challenge test and some of whom subsequently were diagnosed with gestational diabetes. What were these women upset about? Well, everything about this test and its aftermath. Here are the common themes:

1. How could this happen to me when I am so healthy?

2. Why should a body’s fitness to process food during pregnancy be assessed on the basis of its ability to process something that is nothing like a food? Writers and commenters who carefully watched their diets were horrified at their reactions to the drink (some vomited, some felt like vomiting, some were grossed out) and peeved that they were expected to consume something so sugary, in the name of health, that they avoided so scrupulously in all its forms.

3. Why should they be forced to carry out such intensive monitoring when their real diets were completely fine? Some writers and commenters received a gestational diabetes diagnosis and were instructed to monitor their blood sugar using a glucose monitor four times a day (fasted in the morning before breakfast, and either 1 or 2 hours after meals). These women often found they processed their actual diets completely fine, and never had alarming results. Alternatively, they found that they processed their normal diets fine and had alarming results when they did eat carbs—which in some cases they claimed not to eat for exactly this reason.

4. Had they somehow failed their children by having gestational diabetes, and was it their fault? This was not the same righteous anger as the other two, animated by convictions about what was and was not healthy. These women felt terrible and worried about their babies. One blogger, a nutritionist specialising in gestational diabetes, chronicles her thought process on failing the test and openly admits to equating failing this test with actual, upsetting failure, her extensive knowledge on gestational diabetes notwithstanding. Her language? 'How could I not feel that way? The official medical terminology was passing or failing.’

Ultimately many women made peace with their experience, either of failing the first test and passing the second or weathering a third trimester full of screening. They dispensed advice on how to move on, how to make the best of a gestational diabetes diagnosis and learn more about health and nutrition, how to put oneself aside and put the baby first. They waxed philosophical. The fact remained, though, that they were uncomfortable with the conditions under which they were tested, stressed about the results, and unhappy with the monitoring regime that followed. One nutritionist blogger, Lily Nichols, applied her training as a certified diabetes educator to understanding her own experience in a way that could help others; hers was the only voice I found on the internet that was relatable AND knowledgeable. Most of what I read was one or the other.

I noticed a lot of things in this internet deep-dive. Many women were struggling or had struggled with this process just as I was doing, and they didn’t seem crazy or ill-informed. This was a painful process. Noting their pain, though, didn’t resolve much for me. I still had to answer the question of (1) how did I want to take care of myself and my baby given the fact that I had failed the glucose challenge test and (2) how did I want to work with my doctor on this?

Having tried, and failed, to prove to myself that gestational diabetes was a fabricated disease, I arrived at the conclusion that I did need more information about my body and that I did need outside input to get that information. I talked it over with my husband and decided to buy a glucose monitor to track my blood sugar levels; I could use this information to decide how I wanted to proceed. I began the four-times-daily process of puncturing a finger, squeezing a drop of blood onto a test strip, and writing down the number that resulted. I kept a log of what I ate alongside the number, to see if anything in particular spiked my blood sugar. After five days I was ready to cry every time I had to prick myself. (You may notice a theme here of me crying). The routine was not easy, pricking one’s own finger is a bit painful and even more painful when you are not very accustomed to taking these readings yourself and make frequent mistakes! I averaged 2 to 3 pricks per successful reading.

Monitoring myself so closely is also deeply uncomfortable for me. The constant feedback from the monitor about whether I was in desired ranges or outside them made me stressed about everything. I spent a lot of time mulling over whether I was allowed to have a snack or whether I was allowed to have a drink outside the mealtimes after which I would test my blood sugar. This was despite all my levels being normal, every time I used the glucose meter, whether or not I ate carbohydrates. This kind of monitoring drove me crazy; the fact that it involved deliberately making myself bleed did not make it more charming. Despite promising myself that I would eat normally during the test period (which I left up to my own discretion about when to stop) I felt frightened of sugar. I also drank water and took walks with more commitment than I had at any point in my pregnancy.

On day 5, I sent the results to my doctor, apologising for taking on board her suggestion without consulting her first. She laughed and confirmed that she had recommended this route, and then confirmed my levels were normal. The hospital protocols in this case were fasting levels below 90 and 2 hour postprandial (post-meal) levels below 120; my levels had been well within this range and usually quite a bit below. ‘Eat normally,’ she said. ‘And you can stop monitoring.’

I did stop monitoring, and I did continue eating normally, plus the freedom that I felt from knowing I would not be punished for what I ate. Despite the number of exhortations I read to look at the glucose monitor as simply a feedback mechanism on my diet, I was not able to be so appreciative of its insights; all I could think about was being forced to have an early induction. I had avoided a gestational diabetes diagnosis, but my new knowledge of gestational diabetes actually had shown me that this was not necessarily the good news I had been hoping for. My research empowered me to make choices about how I wanted to go through the testing process, but it made me careful of the dangers of sugar to the point of being slightly paranoid.

Knowledge, in this case, was the only thing that I could draw on and it felt like the thing to trust, but ultimately it was less decisive and less reassuring than I wanted it to be. Intuition, as well, had been slightly off: my ‘feeling’ that gestational diabetes was a fake disease was not entirely reliable. It was a humbling experience, to be sure.

On not having gestational diabetes

Subtitle: what I learned from overreacting to a routine test.

Like many women who have given birth in the US or in a medical system that follows US protocols, I took a glucose challenge test in week 24 of my pregnancy. The glucose challenge test is a test of how fast your body can metabolise 50 grams of sugar, which you drink in a small bottle of the world’s least appealing juice. How much sugar is this? Well, for reference, two Double Stuf Oreos, or one serving of Double Stuf Oreos, has 13 grams of sugar. If you wanted to approximate this amount of sugar using an Oreo cookie, you would need some 9 to 10 cookies. Your blood is tested before you drink the glucose solution and one hour after to determine your blood sugar levels. And, importantly, you are not meant to consume much water or do much moving around during this one hour.

Like everything with gestational diabetes, protocols vary. Some people are told to fast before the test for 12 hours, told they cannot drink water, and told they need to be still during the test. My doctor advised against fasting, and the staff in the lab where I took the test said it was fine to drink water but not too much. Everyone told me not to walk around during that one-hour period.

Protocols also vary for how you read the test: at the hospital where I go, in Beirut, if you have a pre-drink level of 95 or higher, or a post-drink level of 140 or higher, you are in the category of people who might have gestational diabetes. Some hospitals use lower thresholds, 130 or 135 for the post-drink levels.

My results were 88 and 142. I foolishly did not follow my doctor’s advice to eat breakfast before the test, although I did drink some water and move around the hospital a bit while I was supposed to be waiting in the lab. When I got these results, my doctor looked at me very sheepishly.

‘It’s supposed to be 140,’ she said. ‘We will have to test again. You can do the three hour test, or you can monitor your blood sugar levels with a glucose monitor.’

I tried not to outright glare at her. My doctor is a genuinely nice person, so I don’t always tell her the not nice things that I am thinking. FAKE DISEASE, was the thing I was thinking at this moment. Anything with ‘gestational’ as a modifier that went away after pregnancy immediately made me think it was a fabrication of an out-of-control medicalisation machine.

[I learned in my subsequent research about gestational diabetes that this is not really a fair characterisation. Gestational diabetes was accidentally discovered in 19th century doctors’ efforts* to find a way to support women with diabetes during their pregnancies. They initially tested women’s urine for evidence of sugar to make a diabetes diagnosis. It seems gestational diabetes predates the era of big pharma-driven hospital policies—the manufacturers of this horrid drink did not invent it, as I maintained for at least a week. They might have contributed to new testing regimes, but those red flags did not come up in my research].

I negotiated with my doctor to take the glucose challenge test again, thinking that I would just pass a second time. She also thought this, since I told her I had fasted the first time, and advised me to eat toast with labneh before I went in to take the test. Full of bitterness, I took the test, and the next morning I got on a plane to the United States for Christmas.

My doctor had reassured me it was not a big deal to fail the glucose challenge test. ‘I had 140,’ she said. ‘I took the three hour and it was fine. And, I don’t think you have gestational diabetes.’

At 28 weeks, when we had this conversation, I had gained 7 kilos and my baby was measuring about 1 kilo, slightly small for gestational age. Gestational diabetes can cause macrosomia (big babies, who are hard to deliver) and often shows up in women who either have a BMI of 29 or over (mine was 20 when I got pregnant). I did not fit the gestational diabetes risk-factor profile. As a first course of action, though, my doctor advised we go by the book and follow the standard protocols for gestational diabetes. ‘Don’t hate me,’ she said.

It was unfortunate for both of us that I did, at that moment, hate her.

I took the test again, channelling all my concentration to violent visualisations of bonfires in my veins burning up glucose. My husband and I canceled our plans to go look at discounted designer furniture. When the test was over, I didn’t want to eat, I felt nauseous and icky, like I had binged on sweet treats (which, essentially, I had). Instead of last-minute Christmas shopping I lounged on my couch and Googled gestational diabetes.

The Mayo Clinic told me that gestational diabetes increased the risk of C-section and fetal death, as well as my and my baby’s risk of developing Type 2 diabetes in future. What to Expect warned that a gestational diabetes diagnosis might make early induction necessary. Brigham and Women’s Hospital in Boston said that 50 to 70 percent of pregnant people diagnosed with gestational diabetes develop type 2 diabetes later in their lives. Even the NHS, my pregnancy go-to for levelheaded advice, said the first thing pregnant people with gestational diabetes should do is regularly monitor their blood sugar with a glucose monitor. I was horrified.

We flew to the US. I literally brought up gestational diabetes at every opportunity. My husband was disciplined in his neutral responses to all my commentary. By Monday, I had turned down enough muffins and scones that I think everyone around me was worried, and had spent three days calculating whether to ask my doctor about my test results or ignore them until she brought them up. My worrying was predictably useless. At lunchtime she sent me a text message with a screenshot of my test results. 87 fasting, 144 at one hour. ‘I thought I told you not to fast,’ she said.

‘I didn’t fast,’ I told her.

‘Ok, then it’s high. I’m still not worried. Just limit bread, rice, pasta and we’ll do the three hour test when you are back.’

For the first time in my pregnancy I did not thank her. Instead I began panicking. I looked at the bowl of rice I had just ordered. Fuck. I spent the rest of my day in a broody cloud that would impress any adolescent girl. At night, I sobbed into my husband’s neck, lamenting my diagnosis. That night, the first night, I focused on rejecting it, using my preferred argument that the manufacturers of Glucola (the dreaded drink) had invented gestational diabetes to sell more of their product. He held me and encouraged me to respond however I was comfortable. Refuse the three hour test if you want, he said. Don’t restrict your diet. Tell your doctor what you are concerned about.

The next day, I decided I had to move on from these advice websites. They had not clarified anything else in pregnancy, I reasoned, they only communicated standard advice that came without any explanation or evidence. These were written for a general audience. As an academic, I had two weapons at my disposal: a high tolerance for jargon and access to a university library’s vast electronic resources. I could do better than this, I told myself. I could blow the cover off gestational diabetes and find out just what a fake disease it was.

I began with Evidence Based Birth, a website that furnishes readers with the scientific evidence they need to discern whether common medical interventions into pregnancy are ones they actually need or want. My most earth mother friend had recommended it to me (she rejected plenty of common medical protocols in her three births) so I thought for sure it would share my views on gestational diabetes. Dr Rebecca Dekker’s conclusion? ‘We have strong evidence that treating gestational diabetes improves outcomes for both mothers and babies.’

I cried some more. In between sobs, I consulted her bibliography. I plucked out the meta-analyses and systematic reviews and pasted them into the Cambridge University library search function. I consumed abstracts frantically, skimming over anything that got too detailed for me to immediately apply the information to my own ongoing argument with my doctor in my head. I learned that the diagnostic criteria for gestational diabetes were controversial: the US model, which uses two tests, usually leads to fewer gestational diabetes diagnoses than the European standard of one test. I saw the word ‘controversial’ appear in abstract after abstract. I also saw the recurrent appearance of references to worldwide increases in diabetes and obesity, and the acknowledgement that increases in gestational diabetes diagnoses could mean more gestational diabetes specifically but it also might just mean more people were developing diabetes, and this screening was picking that up.

I narrated my new learning to my husband, through a new intellectual lens: gestational diabetes was part of a worldwide initiative to discipline fat people’s bodies and shame them into conforming to a norm through the threat of medicalisation. None of these risk factors apply to me, I told him. I don’t need to go through this test, and I do not have this disease. He dutifully agreed with me, and refrained from telling me to get out of my pajamas, it was 10 am.

At night, in bed, I cried more. ‘What if I have gestational diabetes?’ I told him. ‘They will make me keep a food journal and test my blood sugar levels every day and then force me to have an elective C-section before my due date.’ Except I didn’t say it like that, in a sentence, but in hiccups while I wailed through the distress of failing a test, of submitting to a system that found me inadequate, of knowing that my conviction of my own rightness was not as strong as the fear that something bad would happen to my baby, that I would overestimate my own cleverness and gamble with his life and I would lose. I was suffering. All of my knowledge about the anti-feminism of the medical establishment, about the corrupt ways that expert rule was consolidated and imposed, did not free me from this fear that something bad was going to happen to me if I did not follow instructions exactly right.

I gave up sugar, I bought high-protein and low glycemic index bread, I walked after meals. Instead of crying on my husband before I slept, I cried after he went to bed. I woke him up and then gave monosyllabic answers to his questions. I had gone beyond the point of seeing this issue as potentially humorous or a chance to learn; I could see my mental health deteriorating. After maybe the third night of this, he confronted me in the morning. ‘Susan, you have been crying about this for six days. What is wrong?’

I consulted a friend. She advised me to listen to my anger, to use visualisation to learn about meeting my own needs, to consider whether I felt alright about my plans for how I intended to give birth. I knew she was right, that my husband was right, that other things than gestational diabetes were wrong. I continued to fixate. Where were the moms who went through this testing? I wondered. What mommy bloggers chronicled this whole hellish ordeal? I will continue this saga in the next post, out of consideration for readers’ eyes.