Celiac and Pregnancy

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I’ve always wondered how celiac would impact a pregnancy, the unfortunate thing is that there isn’t a ton of information out there. I remember asking my doctor about it when my husband and I started talking about children…I’d made the mistake of googling it, and had only come across references to infertility. My doctor assured me that everyone is different, and that the time to discuss infertility would be years down the road only if we had challenges conceiving. Plus, I’d been gluten free for years, which should have helped my chances for success.

Recognizing that I couldn’t find much information about pregnant celiacs was one of the main things that brought me back to blogging. While I know a number of other celiacs, I don’t personally know any that have children and could provide insight. Before I go any further, this post is all about my own personal experiences, everyone and every pregnancy is different. That being said, I would LOVE comments and responses about other celiac experiences! Let’s get information out there to help each other out.

So the first trimester…woof 🤢 let’s be honest, “morning” sickness is quite possibly the worst characterization of what really occurs. I felt absolutely fine until about week six or seven, and then it hit me like a semi truck. I had no appetite at all, and felt nauseous all day. At any given moment I felt like I was going to throw up, but through my entire pregnancy I only actually got sick a handful of times. The nausea was so intense that I could barely be in the kitchen. My poor husband had no help from me when my parents visited early in my pregnancy. They all were amazing though, and from what I heard, they ate well that week. The foods that sustained me through that period were ice chips, cucumbers, watermelon, and Outshine popsicles. That’s right folks, all high water content. Some meals were just completely skipped.

During that time, my husband had to travel a few times for work. Not being able to stomach the kitchen made it pretty difficult to keep my nutrition up. With that in mind we stocked up on gluten free chicken nuggets, cereal, and anything else bland that could pretty much be microwaved or eaten straight from the packaging.

I had wonderful friends that passed along countless ideas to counteract the nausea, and trust me, I tried them all….teas, bath soaks, ginger in various forms, and sea bands. I reached a point where if one more person told me to try ginger ale I was going to smack them across the face (inappropriate, I know, but I was a very uncomfortable pregnant woman). In the end the only things that ever helped were sea bands and running. Dead serious, the days that were the most bearable were the ones that started with 4-5 miles run at 6am with my neighbor. We kept that up through a majority of my pregnancy, though each run became slower than the previous until eventually they were all walks.

Now for the worst part…I’m sure each celiac has a tell, that one reaction that tells you that you’ve definitely had gluten. Mine happens to begin with ridiculously uncomfortable burping, that feeling that if you opened your mouth you couldn’t guarantee that you wouldn’t vomit. Throughout my entire pregnancy I had this same feeling, without ANY contamination. We quickly realized I had no way of knowing whether I’d had gluten or not. Let me tell you, this may have been the most stressful experience during my entire pregnancy. Imagine being worried about your own nutritional intake, eating healthy for baby, fighting nausea, and NEVER knowing if that nausea was caused by your pregnancy or something that could be much worse. On top of that, I was terrified of what being contaminated would do to my child. We quickly all but eliminated eating out. The worst of my nausea tapered off sometime after week 16, but I never could tell when I’d been contaminated for the remainder of my pregnancy.

As we started filling out our hospital registration I had another worry, how would they know that I couldn’t have gluten? I must have confirmed with my doctor at every visit that yes, my chart included celiac, and that would be sent to the hospital as soon as I was on my way. I reiterated this information with the family center when we went through preregistration. As soon as we walked in the day my son was born, my husband and I both checked that the information had been provided to the hospital staff. I’m happy to report our hospital was amazing. The food was surprisingly delicious, and well marked with allergy alerts each time it was delivered. Best of all, my daily menus included only what I could safely eat, and the staff confirmed my gluten free status every time I called down my order. I may have had a difficult delivery (a story for another day), but it was such a relief not to worry about what was eating while I recovered.

I couldn’t tell you how my experience differs from that of a woman without celiac, as this was my first child and I’ve been gluten free for about seven years now. Did it feel like hell at times? Of course. Was it worth it to see that little face for the first time? ABSOLUTELY!! I hope this helps at least one other person to know they’re not alone, because the googling can be maddening. If you have a celiac pregnancy story, please share it!

My Celiac Running Crew

Learning to live with celiac disease can be both challenging and frustrating, especially if you don’t have a great support group.  I totally lucked out, and hit the support group jackpot!  My sister introduced me to two of her friends that both have celiac disease, Liz and Amanda.  Though I had only met them a few times, I reconnected with Liz (her blog here) at the Leukemia & Lymphoma Society’s Light the Night walk.  I hadn’t been running seriously in years, but really wanted to get back into now that I felt my celiac disease was under control.  To refocus my running, Liz talked me into training with Team in Training (TNT), which supports the Leukemia & Lymphoma Society.  Although we didn’t always make it to the team runs, we put together a great group of girls that get together on the weekends for training and fun runs!  The best part is, four of us are living with celiac disease!  These runs have become something I truly look forward to on a weekly basis.  We gripe about the latest frustration or glutening (glutening explained here), talk about local restaurants that can safely prepare gluten free foods, and gush about new recipes we’ve found.  There is nothing better than a fifteen mile training run spent catching up with other celiacs that “get it,” and yes, I said fifteen miles (Liz’s blog about our run)!!

Thanks to the support of these girls, I am happy to say I finished my fourth half marathon last weekend.  I ran the Nike Women’s Half in DC with my TNT team, Out for Blood (check out my race recap here).  This was the first race I’d run in over two years, and truly shows how far I’ve come since my diagnosis.  I had such a blast that I’m joining TNT again for the Marine Corps Marathon this coming fall, which will be my first ever full marathon, and has been a goal of mine for a long time now!

So what’s the tie to celiac disease with this post? I’m glad you asked… celiac disease patients with ongoing intestinal damage have a higher risk for lymphoma than those with healed intestines.  Lymphoma is a type of blood cancer that begins in the lymph system, and can eventually spread to other parts of the body.  The following is an excerpt from a study published in the Annals of Internal Medicine.

“This study included more than 7,600 people with celiac disease who had follow-up intestinal biopsies six months to five years after their diagnosis, and were then followed for roughly nine years.

At the time of their follow-up biopsy, 57 percent of the patients had healed intestines while 43 percent had ongoing intestinal damage, according to the study, which was published in the Aug. 6 issue of the journal Annals of Internal Medicine.

Overall, the patients with celiac disease had an annual lymphoma risk of about 68 of 100,000 people, which is nearly three times higher than the general population’s risk rate of about 24 of 100,000.

Meanwhile, the annual risk for patients with ongoing intestinal damage was about 102 of 100,000 people, compared with 31.5 of 100,000 for those with healed intestines.”

That’s definitely a startling piece of information, and just one of the many risks that come along with having celiac disease.  In its 25 years, TNT has trained more than 570,000 participants for endurance sports, and investing more than $875 million in blood cancer research.  Help me declare that cancer ends with me!  Support my next run with TNT for the Marine Corps Marathon by donating to my fundraising page, linked in the TNT graphic below.

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