Celiac and Miscarriage:
Do you remember the day you decided you were ready to start a family?
Maybe you’ve been married for a little while or you’re in that stable relationship that you wanted to have in place before becoming pregnant. Maybe you’ve been sexually active for a while, but you’ve been careful, you didn’t want an unplanned pregnancy derailing your career, or locking you into a relationship that you knew wasn’t right, so you waited. You may have even had a scare or two. No birth control method is 100% after all.
That was essentially my story. It was 1989. I was in my mid-twenties, married for about six months and my husband and I were excited to get started, so I went off the pill. It would be twenty years before I would even know what celiac disease was let alone be presented with my own diagnosis. So on I went happy and naïve.
I got pregnant easily and my pregnancy was pretty much textbook. I followed along with the booklet I got from my doctor and each symptom came along exactly when expected and all those symptoms were fairly mild. This pregnancy thing is a breeze I thought. I tried to eat well, drank lots of milk, took my pregnancy vitamins and avoided alcohol and drugs including over the counter pain killers and allergy medications. I recall in my prenatal class being asked “What’s been the worst part about being pregnant” and my answer was “not being able to take anything for my allergies”. I had severe seasonal allergies since I was a teenager and living through August with no antihistamines was pretty tortuous, but if that’s the worst thing you have to report then life isn’t too bad
I survived August allergies, and in November, just a few days after my own birthday, I gave birth to a perfect 8Ib 9oz baby boy.
This isn’t the story you were expecting, is it? Easy time getting pregnant. Relatively easy pregnancy with a joyous outcome. But the story doesn’t end there.
Although my first pregnancy was pretty uneventful, I did notice one very strange change in my body. My skin started doing unusual things. It started with an annoying cluster of plantar warts on my left big toe. It didn’t matter what I did, I just couldn’t make them go away. Then like magic, the day after I gave birth, still in the hospital, I looked at my toe and the warts were just gone! I also started growing things on my body. I guess you'd call them skin tags; little protrusions of skin that would show up out of nowhere. They weren't really a problem but they weren't welcome either.
The other skin related change was much more intrusive and much less magical. I started getting little bumps on my palms that were extremely itchy and some would swell to become little water-filled blisters that were sore and felt like tiny pebbles under my skin. My hands look like hamburger. It was embarrassing. I wouldn’t shake hands and tried to keep them hidden as much as I could. I could see how salespeople looked at me when I stretched out my hand to except change.
I know now that dermatitis herpetiformis is the celiac disease rash. My doctor said it was contact dermatitis and had me keep my hands out of water as much as possible, avoid soaps and harsh cleaners and use hydro-cortisone cream to keep the rash under control. These measures helped a bit, but not really. I think of the pain and discomfort I could have saved myself if I’d know that a gluten free diet would be the cure for this uncomfortable and embarrassing skin condition.
I should mention that my children’s father and I are now divorced, but at this stage of life we were still hopeful and looking to grow our little family. By now it was the early nineties, and I was in my late twenties. I was healthy except for the then mysterious skin problem and some minor issues that would crop up in routine bloodwork like low iron and high liver enzymes. These things should also have been clues.
The other thing I know now about celiac disease and pregnancy is that celiac, although hereditary can lay dormant for years or even decades until some type of trauma triggers it. Pregnancy and childbirth can be that trauma!
This second pregnancy and the first were poles apart! Somewhere between three and four months, I noticed a little spotting. My doctor said it could be nothing but sent me for an ultrasound just to be sure. If you’ve had a prenatal ultrasound, you know that you have to drink a lot of water before hand and hold it in. I don’t know if the pressure from all the water had anything to do with it but while laying on my back on the ultrasound table I felt a pop and I knew I needed to get to the washroom right away! I was sitting there, blood flowing from my body not knowing what to do when the receptionist knocked on the door and came in to check on me. What I mistook for concern for my welfare was really concern for the fact that I was taking up the washroom and she let me know in no uncertain terms that I could not stay there. I had driven myself to the clinic and knew I couldn’t drive home; my husband was watching our son, so I called my mother. Being young and naïve I really thought all I needed was a change of clothes and a ride home. When my mom showed up, she took one look at me and had the receptionist call an ambulance. I still marvel to this day how I could be in an office full of medical people, and it took my mother to see that I was in trouble! Needless to say, she made the right call. The ambulance attendant said I had lost a lot of blood and needed to get to the hospital right away. After several hours and a D&C, I was no longer pregnant.
Dr Joseph Murray in his book Mayo Clinic: Going Gluten Free, talks about celiac disease and recurrent miscarriage as well as infertility. He says that celiac disease can affect hormone production which can then affect a woman’s menstrual cycle and ability to get pregnant. If a young woman has particularly heavy periods, or often misses periods then celiac may be suspected. When it comes to celiac and miscarriage, the cause is not well understood but it could be hormone fluctuations, or malabsorption of vitamins and minerals. Celiac disease can cause other pregnancy complications such as early delivery or low birth weight1.
For her book, The G Free Diet, Elizabeth Hasselbeck consulted Dr. Peter Green, director of the Celiac Disease Centre at Columbia University. He reports a similar correlation of celiac disease and recurrent miscarriage as well as other pregnancy issues, further stating that women with untreated celiac disease experience a 17.8 percent rate of pregnancy loss compared to 2.8 percent for women with celiac who are on a gluten free diet2. In fact Dr. Green is pretty direct about the correlation between celiac and miscarriage, saying that any couple who experiences multiple miscarriages with no other explanation should be tested for celiac disease. If only I'd known this in the early nineties!
A 2001 study from the University of Salerno in Italy reported tTg activity in the umbilical cord3. This is just one study but may suggest that the relationship between celiac and miscarriage may be about more than just nutritional deficiency. There may be something going on with the immune system. Celiac disease is an auto-immune condition. Auto-immune means that the body attacks a part of itself in the presence of what it interprets as a foreign invader. Could the immune system be attacking the sperm or even the fetus itself?
Celiac and pregnancy is not just a women's issue, celiac can also affect male fertility. It can influence testosterone levels as well as quality and quantity of sperm4. So, if a couple is having difficulty conceiving, both partners should be tested for celiac disease.
Infertility was not our issue, we got pregnant no problem. It was just hanging on to it that seemed to be easier said than done. I had three more miscarriages after that first dramatic episode at the ultrasound clinic. My husband and I went for genetic testing. I also had multiple blood tests and a hysteroscopy which is a procedure done under general anesthetic during which a camera or “scope” was inserted through my vagina into my uterus in search of any abnormality. There were none. Blood work always came back normal except that I often had low iron, hmm… it seems unbelievable to me know that with all that poking and prodding and testing no one in the medical community seems to be aware of the correlation between celiac and miscarriage. I was even tested for diabetes, but not for celiac disease.
If you’ve read many of my other articles, you likely know that I have a daughter as well as a son, so things did work out in the end. However, in addition to two miscarriages that were simply finalized with a D&C, I had one more dramatic, and traumatic episode awaiting. I made it to 20 weeks, that’s five months, before the routine ultrasound revealed that the baby had died “in utero”. You’d think I’d be devastated, but to be honest I was kind of numb, and scared. My OBG had mentioned at some point that a dead fetus can harm the mother, yet he didn’t seem to be in a hurry to resolve this, saying that nature would take its course I would miscarry naturally. By this time, I’d learned to advocate for myself so I contacted my GP and with her help got agreement that this needed to be taken care of ASAP. It was too late in the pregnancy for a D&C, the risk of bleeding was too high, so I was admitted to hospital, had labour induced and delivered the baby, a little girl. When the nurse asked me if I wanted to see her I said “no”. I was exhausted, high on pain killers and a bit freaked out. I’ve always wondered if I’d made the wrong decision.
You might think I’d give up, and to be honest I’m not really sure why I didn’t. I think I just felt strongly that I was meant to have two children. So, we decided to try one more time. This, I was clear, was the last time. If things didn’t work out, I’d be satisfied with my beautiful little boy and move on.
The pregnancy was difficult.
I was sick all the time and so frustrated. It seemed weird that the term is “morning
sickness” but morning was the only time I didn’t feel ill. Then one day I got a clue. I was having a rather good day until my
husband, son and I decided to go out for ice cream. Soon I was so nauseous I was unable to get up
off the sofa. Could this be related to
the ice cream. I’d heard that some
people had trouble with milk, but I love milk.
Could it be. A little more
investigation and I figured out that I felt okay when I first got up in the
morning but after I had my cereal, with milk, I started to feel sick. My doctor educated me about lactose
intolerance and I tried lactose free products and adding an enzyme to my milk
that would convert the lactose to sucrose.
Nothing worked so I just ended up avoiding milk for the rest of my
pregnancy. I’ve since learn that people
with celiac often have issues with dairy.
This includes lactose, the sugar in milk, and casein which is one of the
proteins in milk. So let's take inventory again. We are now pretty well aware of the following correlations: celiac and dairy intolerance, celiac and low iron, celiac and dermatitis, celiac and miscarriage...yet no one did the math.
Persistence paid off! I gave birth to a healthy baby girl who is now an amazing young woman. I still marvel at the fact that so many signs were there: multiple miscarriages, dairy intolerance, skin problems, low iron, yet the topic of celiac disease never came up. It wasn’t until sixteen years after the birth of my daughter that I was finally diagnosed and the lights, one by one started coming on to illuminate the events of my past.
I hope my story, just one woman’s journey with celiac and miscarriage, can add to the chorus and help guide others experiencing the similar issues to keep trying and to advocate for yourself. There has been more research since the early nineties and more understanding of celiac disease. I’m hoping this means timelier testing and diagnosis for women experiencing pregnancy and fertility issues. Just a quick search of the Canadian Celiac Association forum brings back many heart wrenching stories so I know my sisters are still out there and still suffering.
1. Murray, J. A. (2014). Mayo Clinic going gluten-free. Time Home Entertainment Inc.
2. Hasselbeck, E. (2011). The G free diet: a gluten-free survival guide. Distributed by Amazon Digital Services.
3. Sblattero, D. (2009). Anti-Tissue Transglutaminase Antibodies from Celiac Patients Are Responsible of Trophoblast Damage via Apoptosis in Vitro. A Possible Role for Infertility
4. R., G. P. H., & Jones, R. (2020). Celiac disease: A hidden epidemic. William Morrow, an imprint of HarperCollinsPublishers.