A hidden cause of infertility..and what you need to know about Celiac Disease
I am an infertility champion of sorts. I am pretty sure if you caught a glimpse of our family out on an errand or volunteering at school, you would not guess with our full crew that we ever dealt with infertility, but we did.
We fought the battle and came out winners in the end, many people aren’t as lucky. That fact has never been lost on us. Even though our struggle with infertility officially ended in the early months of 2011, the years we dragged ourselves through the challenges, sadness, and disappointment somehow stay forever and are woven into the fabric of life.
National Infertility Awareness Week
April 23-29 is National Infertility Awareness Week and I have felt compelled for a long time to share my journey on the bumpy road of infertility and ultimate diagnosis with Celiac disease. A push has been led by www.infertilityawareness.org to increase the awareness and help empower those who are working hard to build their family. Even though it is scary to do so, I have decided to share my story in hopes my message will help another family as well!
Coincidentally, immediately following National Infertility Awareness Week in May is Celiac Awareness Month. It sure grabs my attention that they fall together on the calendar.
You know these aren’t exactly the best clubs to be a part of. But, life seldom pans out exactly as we have planned…
Even before my husband and I were married, we knew we wanted kids – 3 to be exact. We seriously had names picked out. Some people might think that’s crazy that two college kids were thinking about these things, but what can I say…we’re planners!
Deciding IF we wanted to have children was never an issue. Once we were married and settled with our home and careers, it just seemed like the most natural thing to do, our next step in life together. Unfortunately for us and so many other couples out there, that next step turned into an uphill battle. It was a battle that took a toll emotionally, physically, and financially.
We were lucky
While infertility isn’t exactly a lucky hand to be dealt, we did definitely experience some levels of good fortune along the way. A big win for us at that time was the fact that we were living in a state that required insurance companies to provide coverage for fertility treatments. We were able to have insurance benefits for infertility care just like we would for any other medical issue. It was an amazing gift.
We also lucked out by finding success relatively early on during our treatment phase through the care of a passionate team of Reproductive Endocrinologists. About 6 months into our care, we learned the best news ever- I was pregnant! Everyone seemed to be cheering us on! Receiving that news was like none ever delivered to us before!
I could finally breathe
I distinctly recall the tension I felt that entire pregnancy. Worrying about things not ending well, I had fears about allowing myself to get too excited. I felt like I held my breath the entire pregnancy, waiting for the time that I could finally breathe and realize that everything was going to be okay.
Finally being able to shop for maternity clothes was such a thrill, but I was also secretly shaking in my boots that doing so would jinx the pregnancy. I was pumped to finally be able to register for baby gear, but waited and waited because it was too scary to let myself get excited. What if things weren’t going to pan out as expected?
I am sure I was a crazy, tense, and nervous expectant-momma, but I guess that is okay! I earned it! My husband seemed to deal with it with stride! Our sweet baby arrived healthy and happy! I felt like all of our dreams came true, and they had!
After all we had been through to have our first child, we knew that possibility of not being able to have more children was there. Of course a lot of the pressure was off of our shoulders. We no longer had the emotional burden to carry of wondering IF we would ever be able to have children. We knew that if all we could have was one child, we would consider ourselves blessed for her each day! We’d hope for more, but just accept what happens.
As our child grew and started seeing other children having siblings, a brother or sister was something she often talked about. Eventually we knew that the decision to try for another baby would be just as much for her as it was for us.
Not so lucky
As we started the process to try for baby #2, it soon became evident that whatever it was that plagued us at the start of our journey was still affecting our success, and maybe even more so now! But what was it? Back to the doctor we went and back to the treatment plan of procedures and medications we resumed.
This time we were not so lucky. We no longer had health insurance coverage and had to pay for everything out-of-pocket – like most people do. Those costs added up fast!
We also were not finding success with our treatment plan like we had for baby #1. After a 5th failed cycle we decided to take a break for the holidays and reevaluate after the new year.
We knew that our next step was going to be IVF. The trouble was, I was now a SAHM and we had just started a new business. We had a lot of expenses, including a very costly insurance plan that no longer provided fertility coverage. I was fortunate to even be able to find health insurance coverage in the first place. At the time, several companies denied me coverage due to my pre-existing condition of infertility. Boy, that was a slap in the face! How would we be able to pay for it all?
A helpful friend
Just days after our last failed treatment, a friend contacted me asking me if I had ever looked into the connection between Infertility and Celiac disease. She went on to say she had come across a potential relationship while doing her own health-related research. She said she knew she had to tell me about it.
Hmmmm…. Honestly, at that time I didn’t even really know what Celiac disease was, but knew enough that it had to do with gluten. I really respected my friend’s opinion. I knew she would not have contacted me without having a good reason to do so. Clearly I had some research to do!
Digging in deep
As I began my research process, I had one of those classic light bulb moments. As I was reading the list of symptoms it was like all of the medical mysteries of my life were being described.
Irritability…..check (shhhhhh..don’t tell anyone)
Delayed growth or puberty…..check
Bone or joint pain…..check
Depression or anxiety…..check – anxiety for me
Missed menstrual periods check…..check
Celiac Disease & Infertility
At this point, I couldn’t get my hands on enough materials. I was like a research machine. I ordered books and read just about any article I could find on the topic (Celiac disease + Infertility) and everything pointed to the same fact. Could it be that something as little and insignificant as gluten (a protein found in wheat, barley, rye and sometimes oats) has been the root cause of ALL OF MY ISSUES????
A closed door!
So I did what any infertility patient would do, I contacted my beloved Reproductive Endocrinologist (RE) to share my research and personal health history (which they already had..and included all of the above symptoms).
Unfortunately and to my sincere dismay, I was not met with helpful messages of support like I had been at every step during all of my appointments and treatments. Nope, instead my concerns and questions were quickly put off with abrupt statements of why this could not be my problem. Other random “potential problems” were cited, all which should have been ruled out in the first place (and were).
I asked if they could run the tests for me to see if Celiac disease could be the culprit. Quickly I was told that they wouldn’t know what tests to run and to ask someone else. The end. Sorry we can’t help you. Goodbye. What? WHAT? I was shocked…
It has been WELL documented in the world of Celiac research that undiagnosed/untreated Celiac disease can be a common cause of unexplained infertility. Article after article (and I am talking about scholarly articles) share references to the connection between undiagnosed Celiac disease and unexplained infertility AND recurrent miscarriage.
The common statement I found was that doctors don’t necessarily know WHY Celiac disease can cause infertility, but they do recognize that it does. I read time and time again that patients presenting with infertility should be first tested for Celiac disease to rule it out before starting any costly and dangerous fertility treatments. To say I felt cheated is a gigantic understatement!
An open door
After reeling with my anger from being dismissed by our RE so swiftly, I recalled a conversation I had once with my local OBGYN. She told me during the course of my years trying to conceive baby #2, “If there is ever any way I can help you, please let me know.” I decided I would call her office to find out how she could help.
Within the day, labs were ordered and I popped in for a blood draw. A Celiac panel was run. I was told the results could take up to two weeks to be in. The Christmas holiday was just upon us, so I figured that it might take a while.
In less than two days, I received a call from the nurse and doctor herself with the results. The results indicated a very high antibody response to gluten proteins. The levels weren’t just elevated, they were through the roof! My doctor called me and said, “You figured it out! You did this!” It was so encouraging… I thought, “OMG! What if this really is IT?”
I was referred to a gastroenterologist and my diagnosis was confirmed as was the strong connection between undiagnosed Celiac disease and unexplained infertility. During my appointment this was shared with me, “We won’t know how much gluten has compromised your fertility or if going gluten-free will cure you, but we do know it most certainly has played a part.”
Of course the prospect of going fully gluten-free (GF) was overwhelming, but I jumped in as fast as I could. I figured, at that point, what was I out for trying? A diet change is certainly far easier than carrying the burden of infertility and nothing compared to dealing with IVF. Sign me up.
Within days, but for sure inside a week’s time, I was already seeing improvements in my health and overall well-being. I was no longer falling asleep at the dinner table. I remember being overcome with such utter exhaustion that I could barely function after dinner. In my pre-GF days, I would go to bed with such severe stomach pains that I wondered if I was dying of some terrible cancer or other disease. Suddenly that was all gone!
I am not even going to make you wait a moment longer. The best part of my full acceptance of a gluten-free diet is that 6 (SIX) weeks into my diet change, I became pregnant. Normally, naturally and after YEARS of infertility all it took was changing my nourishment.
We were ecstatic and stunned. All of this time, and all of my health problems. So many years. All it took was changing my diet. Wow. WOW!!!
Our OB was thrilled! Ironically she had another patient at the exact same time who also became pregnant without the use of fertility treatments after being diagnosed with Celiac disease. How many more women out there are suffering as well?
Our RE was underwhelmed, to say the least. I contacted her to share our news and suggest that perhaps they have many more patients in our same shoes and maybe they all should be tested? Surely she’d want them to find the same success we have found, right? Her response, “Good for you.” and “We are well aware of all research on the subject, thanks.” I didn’t even know what more to say to that. We never communicated again.
My pregnancy progressed. I was as sick as a dog and had some challenges, but our sweet baby #2 was born a healthy, happy baby! We felt so blessed and so lucky. To our great fortune baby #3 came along almost exactly 3 years later! She definitely sealed the deal that our days of infertility were 100% over.
While our journey on the bumpy road of infertility has come to an end, it is a trip that we will never forget. Whenever I read about another family dealing with the same struggle or hear about a friend or acquaintance struggling as well, my heart goes out to them. And then I wonder, what if Celiac is lurking beneath the surface for them too, just like it was for us and for woman/family as well?
We never would have asked to be sent down this road (of course), but I know for sure I would not change it for the world. Had things been any different, we would not have the beautiful human beings who complete our family and are our world! I can’t imagine my life without them. I know for certain that the journey we were on taught us a lot about love, patience, and faith. That journey also gave me the life I have today and for that I will be forever grateful.
All couples who deal with infertility can have a wide variety of struggles. Of course Celiac disease is not the hidden culprit for everyone. But, I know there are likely many women and men who want nothing more than to have a family and all that is keeping them from their “happily ever after” is gluten.
It is my hope that we will continue to raise awareness about the connection between Celiac disease and infertility. Perhaps we will soon see a time where no more families will suffer the stress and strain of unnecessary infertility or recurrent miscarriage, all at the hands of undiagnosed Celiac disease.
A few things to consider
Before you run off and immediately start removing gluten here, there, everywhere, here are a few things to consider:
I am NOT a doctor!
- While I have learned a lot along my journey and have been living a GF life for the past 6.5 years, I am NOT a doctor. I am sharing my story with you in hopes of increasing awareness of the connection between Celiac disease and Infertility. Please consult with the medical professionals in your life to talk about what makes sense for you!
Talk to your doctor FIRST.
- A proper diagnosis can be super beneficial in the road to better health. In order to find out IF gluten is a problem for you, please consult with a trained medical professional in the field. So many people jump into trying gluten-free and don’t bother to communicate their plans with their doctors. If you think Celiac disease could be an issue for you, please consult your doctor(s) FIRST!
Do your research.
- Prepare yourself with as much information as possible BEFORE going to the doctor. Not all doctors are as informed as others on the subject of Celiac disease and gluten, as I learned first hand. I strongly believe we have to be our own best advocates. If you aren’t getting the answers you are looking for keep pressing. Ask for a referral or seek a second opinion if you aren’t being listened to.
Do any testing BEFORE you remove gluten from your diet.
- I know you are probably thinking you can dive right in. I caution you to do any/all testing necessary BEFORE you remove gluten from your diet. Removing gluten can skew test results.
Celiac disease means 100% gluten-free 100% of the time.
- There’s no such thing as a little bit of gluten for those with Celiac disease. Even being around gluten can be dangerous. With that said, it is totally manageable. Just like everything else, with time, it will become second nature.
Talk to your relatives.
- Celiac disease is a genetic disease. That means there may be others in your family with Celiac disease as well. Talk with your relatives to find out if anyone else in your family has Celiac disease. If you get a positive diagnosis, please share with them as well!
Everyone is different.
- Please keep in mind that no two people are alike. Even among the Celiac population, almost everyone has a different set of symptoms. I know people who were diagnosed with Celiac disease, but never had any issues with infertility or miscarriage, thankfully for them. I also know others who had NO obvious symptoms of Celiac disease and ended up testing positive. Just like my gastroenterologist said to me, “We won’t know how much gluten has compromised your fertility or if going gluten-free will cure you, but we do know it most certainly has played a part.”
Please check out the links I have added throughout my post for more information on the connection between Infertility and Celiac disease. Here is another article that might be of interest to you. You can find more information about Celiac disease and women’s health at Beyond Celiac.
You aren’t alone
I find it has always felt like the right thing to do for me to be open with people in my life about my own experience with infertility. Years ago I may not have been so willing. There can be a lot of shame, embarrassment, self-blaming, and sadness that often go hand-in-hand when dealing with infertility. It can be a very dark place…
Often what can help most is to know you aren’t alone. To realize that someone else out there gets it, has lived it, and has come out the other side really helps and can give much needed hope!
I know this is a big topic change from what I usually write about, but I feel it is really important to share our stories. So, I gladly will share with anyone who can find inspiration on their own journey. And just maybe by doing so, I can help another family find the answers they are so desperately looking for!
Thanks for spending a little part of your day with me!