Beyond The Diet Fad: My Gluten Journey Through Pregnancy, Life
By Julia Robertson, CPM, Teratogen Information Specialist, MotherToBaby Utah
As it turns out, I’m not crazy nor am I a hypochondriac! After decades - and I mean more than 30 years - of bouts of severe constipation and diarrhea, fatigue, joint pain, migraines, skin rashes and infertility, I finally received the news that I have celiac disease. Oddly enough, it was only after adopting a sickly cocker spaniel named "Peanut" from the Humane Society that the mystery of my symptoms was solved. When our vet suggested that Peanut eat gluten-free food, I bought her some gluten-free pretzels as a treat. After eating some myself, I noticed fewer tummy issues; that feeling of the "kink" in my intestine and the bloating pain didn’t happen!
I contacted my physician, whose first response was, "You don’t have celiac disease, you would have already known it by this time." She tested me anyway and, when the blood test for transglutaminase antibodies (tTG-IgA) was positive, she sent me to a gastroenterologist for an endoscopy (a scope of the intestines), which also indicated celiac disease. It had taken countless trips to countless physicians, but at the age of 55, my health took a turn for the better after starting a diet without gluten.
In my case, it was unfortunate that the diagnosis took so long because for years I struggled to have children. I feel lucky to have gotten pregnant five times and was able to carry two pregnancies to term. My boys are now wonderful adult men and I feel blessed to have them in my life! I’ll never know if my undiagnosed celiac disease contributed to my pregnancy losses or my harder time in getting pregnant, but as an information specialist with the MotherToBaby Utah program and over 20 years’ experience talking to mothers and health care providers, here’s what I do know from reviewing the published information about celiac disease…
What is Celiac Disease?
Celiac disease is inherited, meaning it runs in families. When people with this auto-immune disease have contact with gluten, it causes inflammation or swelling and can damage the small intestine. Over time, the damage to the intestine causes serious health concerns, including an increased risk of colon cancer and lymphomas (cancer of the lymphatic system, such as Hodgkin's). It is estimated that 1 in 100 people worldwide have celiac disease. Many are never diagnosed.
With celiac disease, food that is eaten is quickly released from the body with little time for nutrients to be absorbed by the body. That’s because the finger-like tubes in the small intestine, called villi, are flattened from the swelling.
Celiac Disease and Pregnancy
For women who want to get pregnant or who are pregnant with celiac disease, it can be a nutritional nightmare and may lead to anemia (low iron) and other vitamin deficiencies, lactose intolerance (unable to eat dairy), and osteoporosis (weak and brittle bones). It is rare that people
have only one autoimmune problem and, for many people with celiac, thyroid disorders and diabetes go hand-in-hand. A recently published study looking at 24 articles on ‘reproductive’ issues found women with celiac disease have a harder time getting pregnant, as well as a higher risk for miscarriage, prematurity, babies born small for their age and with low birth weight. With other autoimmune disorders, such as rheumatoid arthritis, multiple sclerosis, and Lupus, we see the same types of negative pregnancy outcomes. More studies are needed to confirm if celiac disease increases any risks.
The good news is that studies also show that when moms stay on their gluten free diets, the problems almost always go away! So, to my ‘Celiac Sisters’ there is hope! Here are a few suggestions to have a healthy pregnancy:
- Avoid gluten, of course! Not only is gluten in foods, but gluten hides in make-up (be extra careful with lipsticks), hair products, soap and even in sheetrock. Never lick an envelope or a stamp, because there is gluten in glues!
- Take your Multivitamin Before, During and after Pregnancy. A multivitamin will help balance nutritional deficiencies from celiac disease. Make sure your vitamin has at least 400mcg of folic acid.
- Control the Other Maladies that Come with Celiac Disease. Rarely will someone just have celiac disease. If you have thyroid problems, diabetes or hypertension, it is important to stay on your medications and control these issues before you try to have a baby.
Ultimately, if you control the symptoms from celiac disease, you can be healthy during your pregnancy. It takes some work to avoid gluten, but I promise you will feel better! In retrospect, the veterinarian really saved two lives that day…Peanut is also doing great on a gluten-free diet!
Julia Robertson, CPM, is the program manager for MotherToBaby’s Utah affiliate, a program with the Utah Department of Health and University of Utah that aims to educate women about medications and more during pregnancy and breastfeeding. Along with answering questions from women and health providers regarding exposures during pregnancy/breastfeeding via MotherToBaby’s toll-free hotline (866-626-6847) and email counseling service, Julia has authored several peer-reviewed publications focusing on maternal medication consumption and the effect on the developing fetus.
MotherToBaby is a service of the international nonprofit Organization of Teratology Information Specialists (OTIS), a resource suggested by many agencies including the Centers for Disease Control and Prevention (CDC). If you have questions about vaccines, medications or other exposures, call MotherToBaby toll-FREE at 866-626-6847 or visit MotherToBaby.org to browse a library of fact sheets and find your nearest affiliate.
The Teratology Society partners with the OTIS through joint sessions at our annual meetings as well as a shared interest in public health issues for expectant mothers.
Mahadoy S, Green P. Celiac Disease: A Challenge for All Physicians Gastroenterol Hepatol (N Y). 2011 Aug; 7(8): 554–556
Tersigni C, Castellani R, de Waure C et al. Celiac disease and reproductive disorders: meta-analysis of epidemiologic associations and potential pathogenic mechanisms. Human Reproduction Update. 2014 Vol.20, No.4; 582–593.