On this Celiac Disease Awareness Month…
The month of May is Celiac Disease Awareness Month. Now, for those of you who aren’t particularly familiar with celiac disease, you may be thinking, “why is a doula talking about celiac?” The answer for that, which I’ll continue to elaborate on throughout this post, is that celiac disease can have far reaching consequences on fertility, pregnancy, and birth outcomes! In fact, my own struggles to become a parent have been intimately connected with my experience as someone with celiac disease and this is one of the reasons that I’m so passionate about this topic. So, if this is news to you, let’s talk about it!
Celiac disease – which affects approximately 1% of the population – is an autoimmune condition in which exposure to gluten (a protein present in grains like wheat, barley, and rye) triggers the body’s immune system to go on the attack. Instead of attacking the protein itself, the body attacks the tissues of the small intestine. Your small intestine is filled with little finger-like projections called cilia that increase the surface area of your gut. This is what makes it possible for you to absorb all the nutrients from your food. However, when the cilia become damaged by antibodies, their surfaces become shorter and nutrient absorption decreases. This can also lead to a lot of ‘classic’ celiac disease symptoms like diarrhea, bloating, gas, abdominal pain, fatigue, weight loss, and more. However, celiac disease doesn’t always show up in these classic ways and people can see wide ranging effects on their body, including neurological issues (balance problems, memory loss, tingling sensations in the arms and legs, etc.) and reproductive health issues (Fasano, 2014). In the words of Dr. Alessio Fasano, “the gut is not like Las Vegas: what happens in the gut doesn’t stay in the gut” (Fasano, 2014, p. 62). Let’s talk about what the research can tell us.
The research linking celiac disease to fertility challenges is a bit mixed. While there are several published studies that have shown links between celiac disease and infertility (Singh et al., 2014), there have also been others that do not show this association. One challenge in comparing these studies is that different diagnostic markers for celiac disease may be used across studies and that the criteria for determining whether someone is experiencing infertility are not always clearly stated (Freeman, 2010). I suspect also that as research on celiac disease progresses, we may find that there are several different ‘subtypes’ of clinical presentation and that, for reasons unknown, some people with celiac experience reproductive health effects while others do not. However, in the studies showing a connection between the two, researchers have found that women [term used in the literature] with celiac disease experience higher rates of delayed onset of the first period, early menopause, recurrent pregnancy loss, and reduced rates of pregnancy (Freeman, 2010). There are also higher rates of “all-cause” and “unexplained” infertility than in women without celiac disease (Singh et al., 2014). Many researchers note that once a strict gluten-free diet is implemented, fertility often improves and people whose celiac disease is diagnosed and well-managed experience fertility comparable to the general population (Freeman, 2010). Some have proposed that impaired nutrient status – not absorbing enough vitamins and minerals – may contribute to poor reproductive health in untreated celiac disease; however, there have been relatively few studies examining micronutrient status in pregnant persons (Freeman, 2010). Another possibility is that, because the antibodies produced by people with celiac disease can interfere directly with the developing embryo, this could impede embryo implantation (Peshevska-Sekulovska et al., 2023). In people who produce sperm, undiagnosed and untreated celiac disease can also impact sperm morphology and motility which improves upon the removal of gluten from the diet (Freeman, 2010).
Undiagnosed and untreated celiac disease can also have impacts on an established pregnancy. If untreated, celiac disease is associated with higher rates of recurrent miscarriages, premature birth, intrauterine growth restriction, low birth weight, small for gestational age, and stillbirth (Freeman, 2010; Saccone et al., 2016). These effects are not always well explained but may be associated with damage that occurs to the placenta as a result of celiac antibodies (Freeman, 2010). Birthing persons may experience higher rates of caesarian birth and have lower rates of continued breastfeeding/chestfeeding. Because celiac disease can also develop at any stage of life for those with a genetic susceptibility, the dramatic physiological and hormonal changes that happen during pregnancy may trigger the development of celiac disease in someone who never showed signs of it before (Freeman, 2010).
While the association between celiac disease and reproductive health isn’t currently fully understood or even accepted, it is clear that considerably more research on this topic needs to be done to ensure that people are getting diagnosed and treated as soon as possible. Further, because of the misconceptions about celiac disease and the ease and effectiveness of the gluten-free diet, many people who are diagnosed are sent away to learn how to manage their diet based on inadequate or inaccurate information and receive inadequate follow-up to ensure that their bodies are responding to the gluten free diet.
It wasn’t until after I experienced the stillbirth of my son and experienced ongoing digestive distress than I was eventually diagnosed with celiac disease. Because I received inadequate follow-up to ensure that my body was responding to a gluten free diet, it wasn’t until this year (10 years after my diagnosis!) after struggling to become pregnant for several years that I found out my body has not been responding typically to the gluten free diet and needs additional support. While it’s impossible for me to say for sure that my own difficulties in this area are solely caused by celiac disease, this always seems a place that I come back to. People with celiac disease deserve better care, from diagnosis through the rest of their lives, and I firmly believe that people with celiac disease planning pregnancies should be supported by their health care providers to ensure their bodies are as healthy as possible so that they do not face higher risks of complications during this deeply important and special time of their lives. If you think you may have celiac disease, please follow up with your general practitioner for testing before you consider removing gluten from your diet. Seek expert support from registered dieticians and get all the support you need.
References:
Fasano, A. (2014). Gluten freedom. New York: Wiley General Trade.
Freeman H.J. (2010). Reproductive changes associated with celiac disease. World Journal of Gastroenterology, 16(46), 5810-5814. http://www.doi.org/10.3748/wjg.v16.i46.5810
Peshevska-Sekulovska, M., Gulinac, M., Rangelov, R., Docheva, D., Velikova, T., & Sekulovski, M. (2023). Navigating the challenges of gluten enteropathy and infertility: The role of celiac-related antibodies and dietary changes. Antibodies, 12(4), 79. http://www.doi.org/10.3390/antib12040079
Saccone, G., Berghella, V, Sarno, L, Maruotti, G.M., Cetin, I., Greco, L., Khashan, A.S., McCarthy, F., Martinelli, D., Fortunato, F, & Martinelli, P. (2016). Celiac disease and obstetric complications: a systematic review and metaanalysis. American Journal of Obstetrics and Gynecology, 214(2), 225-234. http://www.doi.org/10.1016/j.ajog.2015.09.080.
Singh, P., Arora, S., Lal, S., Strand, T.A., & Makharia, G.K. (2014). Celiac disease in women with infertility: A meta-analysis. Journal of Clinical Gastroenterology, 50(1), 33-39. http://www.doiorg/10.1097/MCG.0000000000000285