Dear Laura... Should I Follow a Gluten-Free or Low FODMAPs Diet for Endometriosis? (Part 1)

Welcome to ‘Dear Laura’ - a monthly column where I fashion myself as an agony aunt and answer the questions that readers submit. If you’d like to send in a question for me to answer next month, you can submit it here.

I’m happy to answer Qs about anti-diet nutrition, developing a more peaceful relationship to food and weight-inclusive health, annoying diet trends and news stories, body image challenges, and, of course, challenges with feeding your kiddos. Please give as much detail as you’re comfortable with and let me know if you’d like me to include your name or keep it anon.

Please remember that these answers are for educational purposes only and are not a substitute for medical or nutritional advice; please speak to your GP or a qualified nutrition professional if you need further support.

Thank you to Kathy for this question, which she posted in the Discord server:

An Instagram influencer I follow posted a story saying she’d seen, in the stories of an even bigger influencer, the Guardian article on the results of the study saying eating gluten-free reduced endometriosis pain in up to 50% of sufferers. The first influencer, within 5 minutes of reading this, had gone GF and was asking her followers to send her food ideas.

This jumped out at me on a few levels. Firstly, the wildfire spread of an idea via influencers - in this case, a substantial food restriction. Secondly, how neglected by the medical system people with endometriosis are, and what a devastating condition it is. Thirdly, how little research looks at women’s health. Fourthly, how casually such a huge dietary shift as ‘just eat GF’ is thrown out to people without care for the overall effect on their relationship to food, etc. And that’s not even looking at the study quality yet… Not sure if this is a pertinent topic - fine if it’s not - just sharing as I felt a gut reaction to it on lots of levels.

Thanks Kathy - I love this, not so much question, but series of observations that I think are worth exploring in more depth. 

I want to start off by echoing Kathy’s sentiments; endometriosis is poorly understood, the treatment options are limited and often aggressive, and it takes sufferers an average of 8 years and 10 months after the initial doctor's appointment to receive a diagnosis. It can be, by all accounts, devastating and debilitating. And the space between unanswered suffering, and medical inadequacy, is of course fertile ground for grifters to sow mis- and dis-information. 

I’m not going to spend much time discussing the ins and outs of endometriosis; there are better sources of information and places to get support. But I do want to speak to two phenomena that Kathy is touching on. Firstly, the ease with which we are told to cut entire food groups from our diet, and the paucity of evidence to support this assertion. And secondly, the role of influencer pedagogy in spreading dietary misinformation. I’m going to break this post down into two parts. Part one, today, will deal with the nutrition evidence base side of things. I'm going to dig into the study reported in The Guardian, the references that study cited, plus a

Part two, next week, will take a look at the complexities of the way we receive health information through para-social relationships with influencers and why we need to avoid the temptation to straightforwardly categorise them as either good or bad.

What is Endometriosis?

Before we look at the evidence base for dietary approaches, it’s helpful to understand a little background: what even is endometriosis? Endo – as it’s often referred to colloquially online – is a condition ‘where cells similar to those in the lining of the womb (uterus) grow in other parts of the body’. These cells typically grow in and around pelvic organs: peritoneum, ovaries, bladder and bowel. Sometimes they can grow outside of the pelvis (for example, in the chest), although this is much more rare. In the same way that the uterine lining sheds during a menstrual cycle, endometrial cells break down and bleed, but have no way of leaving the body. This can lead to inflammation, pain, and scar tissue. The main symptoms of endo are pelvic pain; painful periods that interfere with everyday life; heavy menstrual bleeding; pain during or after sex; pain when passing a stool or peeing; and fatigue. A proportion of people with endo may have difficulties getting pregnant. 

‘Endo belly’ is the name given to a constellation of symptoms experienced by people with endo and includes bloating, constipation, diarrhea, nausea and gas. Diet-related advice, especially to cut out food, is centred on easing symptoms of endo-belly and we’ll look more closely at it soon.

Because the symptoms of endo are very similar to other conditions, it can be difficult and frustrating to get a definitive diagnosis and subsequent treatment. Scans, blood tests, or internal exams alone cannot diagnose endo (although these might be important to differentiate other diagnoses). Endo diagnosis can only be confirmed during laparoscopic surgery where a camera is inserted into the pelvis through an incision near the navel. 

There is no cure for endo, so treatment is focussed on managing symptoms and improving quality of life. Medicines include painkillers and hormones such as combined contraceptive pill.

Surgery may be offered (especially if fertility is an issue) to remove areas of endometriosis or ovarian cysts caused by endometriosis. Hysterectomy or oophorectomy may be offered in some cases. Surgery might also be required to remove part of the bladder or bowel. Subsequent surgeries may be required if symptoms reappear or if surgery causes scarring that causes adhesions.

Have you tried cutting certain foods out of your diet for a health condition?

Gluten? Dairy? UPFs?

Can I Have Another Snack?Laura Thomas

Dietary Interventions for Endometriosis

Because treatment options for endo are limited, aggressive, and are associated with undesirable side effects, it’s understandable that people have sought out more ‘natural’ approaches to mitigating symptoms, which almost always includes diet. Just a cursory Ecosia will bring you to pages encouraging cutting out gluten, dairy, caffeine, ‘processed foods’, and alcohol. You’ll also be recommended to follow a low FODMAP diet to help manage the aforementioned endo belly. 

It’s not surprising to me, then, that the media jumped on a recent paper published in JAMA Open Network by a team of researchers from University of Edinburgh, headed up by Francesca Hearn-Yeates. The Guardian published the headline ‘Major endometriosis study reveals impact of gluten, coffee, dairy and alcohol’. Which, no it didn’t, but that doesn’t seem to matter to anyone, especially not The Guardian, or the influencer in Kathy’s question who fucking ran with it. 

Regardless of what the study actually found, the headline establishes a tidy narrative that re-centres focus on the individual and the attendant neoliberal value of health as a personal responsibility. These foods make your endo worse, these foods make your endo better. Simples. But, digging deeper than a university press release, a slightly different picture emerges.

Researchers administered a questionnaire (single time point) asking endo sufferers to rate their pain before and after taking dietary supplements or making changes to their diet. Of those who made changes, 66.9% said that changes to diet reduced their pain, while 43.4% said supplements reduced pain. Thus the researchers could effectively split people into groups (of what I am terming) ‘responders’ and ‘non-reponders’ to whichever intervention: diet changes or supplements. The participants either got their recommendations from social media influencers, or from health professionals.

Of the people who made changes to their diet or who added supplements, those who ‘responded’ to the intervention had lower self-reported levels of pain compared to those who felt no-benefit from making changes. The average pain level of diet ‘responders’ was 4, compared to an average pain level of 5 in diet ‘non-responders’. Similarly, for supplement ‘responders’, the average pain score was 4 for ‘responders’ and 5 for ‘non-reponders’.

‘Among the most popular dietary modifications attempted, pain improvement was reported by 53.2% who reduced alcohol, 45.4% who reduced gluten, 45.2% who reduced dairy, and 43.4% who reduced caffeine.’ 

The first thing to understand about this study is that it’s…not really a study? Or, more correctly, it’s not a controlled experiment. Data were self-reported and vague. There was only one data-point. There was no way to check fidelity to the ‘treatment’ group. Hell, there was no real ‘treatment group’. We don’t know how long people were on the diet or supplement for. Or how much a ‘reduction’ in gluten or dairy actually is in concrete terms. There was no measurement of objective biomarkers. There was no analysis of any other differences between the responder and non-responder groups that could have explained variation on their experiences of pain.