Celiac and Infertility: Is there a connection? My personal story…

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In 2010, my husband and I decided we would start trying to have a baby. After only 2 months of trying, I found out I was pregnant a couple of weeks before Christmas. I remember missing my period by 1 day and taking a pregnancy test right before leaving for a trip to Ikea, a 2 hour drive to meet my in-laws to do some holiday shopping. After taking the test and seeing it was positive, I ran downstairs to tell Aaron and he was thrilled. The entire way to Ikea, I couldn’t wait to tell his parents. I knew they were going to be excited to be grandparents.

I went back and forth on if I was going to tell people but I decided to blab to everyone. I’m the worst secret keeper in the universe. People asked if I was nervous about sharing the news so soon after getting pregnant due to the risk of a miscarriage. “No, I’m healthy so I’m sure it will be fine” was my answer to comments like this. Boy was I wrong.

January 8th was our first sonogram appointment and I was 10-11 weeks pregnant. Aaron was late getting to the appointment and I got so mad at him in the lobby waiting for him! We went in the room and after a few minutes the technician broke the horrible news, “I’m not finding a heart beat.” All I remember from that moment forward was Aaron holding my hand and tears streaming down my cheeks. How could this be? How could this be happening? I’m healthy and fit – why was this happening to me?

For 7 years I worked in child welfare, watching mothers use drugs and neglecting their bodies only to have babies repeatedly with seemingly no complications. It just wasn’t fair I kept saying to myself, I take care of my body. I’m healthy, I’m fit and I can’t even have a baby? It just didn’t make sense to me. Something had to be wrong.

The doctor thought I would naturally miscarry on my own from the stress of finding out the news so she let me go home and call in a few days to update her. I went from buying baby things to a miscarriage in the blink of an eye.

Nothing was easy of course… I didn’t naturally miscarry on my own and had to spend a weekend taking pills to induce labor. They didn’t work and after 2 weeks I ended up having a D&C done to remove the gestational sack.

After 6 months with ovulation problems, cysts and cramping, the doctor finally put me back on birth control to regulate my system in the fall of 2011. Little did I know, this was going to open the door my celiac disease diagnosis.

Dr. Aukerman explained women with undiagnosed celiac disease struggle with pregnancies because their bodies are so  malnourished and depleted of vitamins and minerals, they can’t grow a fetus. If your body is exhausted from constantly fighting itself, I’m not sure how it is even feasible. He did say that the majority of his patients once they are diagnosed go on to have healthy pregnancies if they wait until their levels are normal and the body has healed.
Of course I was relieved to find this out but frustrated that no one ever explained that to me in the past and no one ever found my celiac. Right now we aren’t actively trying to have a baby but we will in the future and it’s reassuring to know I’m dealing with the main health problem and can help my fertility when we do try again.

I tell this story to give other women hope and encouragement. If you aren’t happy with what your doctor is telling you or you aren’t sure – get a second opinion. Trust your gut, trust your instincts. I knew something was wrong but no one else caught it. I might not have understood or knew why I had a problem, but I just knew something wasn’t right.
I found great information on the Celiac Central website about infertility and celiac disease:

Celiac Disease and Infertility Link:
Over the last 10 years, several studies have examined the link between celiac disease and infertility and found that women suffering from unexplained infertility may have clinically silent celiac disease.

  • One study conducted by physicians at Thomas Jefferson University Hospital in Philadelphia found that the rate of recurrent spontaneous abortion (RSAB) and infertility in celiac disease patients is at least four times higher than the general population. They suggested that patients who experience unexplained infertility or RSAB should be screened for celiac.
  • Another study from the Department of Medicine at Tampere University Hospital and Medical School at the University of Tampere Finland found that the rate of celiac disease among women reporting infertility was 4.1%. Although the exact reason for the increased risk remains unknown, the researchers suggested that female celiac patients who are not adhering to a gluten-free diet have a shortened reproductive period and early menopause. Males with celiac disease have shown gonadal dysfunction, which could also contribute to fertility complications.
  • The link between celiac disease and infertility is currently being evaluated by researchers at Molinette Hospital in Turin Italy. Early reports from their research suggest that the prevalence of celiac disease among women with unexplained infertility is 2.5% to 3.5% higher than the control population. They suggest that celiac disease represents a risk for abortion, low birth weight babies and short-breast feeding periods, all of which can be corrected with a gluten-free diet.

stork

 

 

 

  • I definitely believe there is a link between infertility and Celiac. I found out in July 2011 that I have premature ovarian failure…the following December they finally diagnosed me with Celiac disease. I had been sick for quite awhile before they caught it and the doctors say it is not reversible. I am post-menopausal at 36 and on hormone replacement therapy and a gluten free diet.

     

  •  Laura Chang

    There is hope! I was diagnosed with celiac in 2008, and told (incorrectly) by my OB at the time that I may experience trouble becoming pregnant…was she ever wrong! Both my boys (ages two and three months) were conceived on the first try(!!!) and other than morning sickness, I had no complications.

     

    •  PrettyLittleCeliac

      Laura-

      Were you already diagnosed celiac prior to trying to get pregnant? Did you already eliminate gluten?

       

      •  Laura Chang

        I was gluten-free for nearly two years before I became pregnant in late 2009. It was quite a surprise how easily it happened–guess my body healed quickly once I went GF. (Cautionary tale, if you’re planning on it taking a while to get pregnant! I was mentally prepared to wait for months, and it was the shock of a lifetime when I got a positive result after two weeks.)

        PrettyLittleCeliac
      • My doctor said I would likely have no problems now that I went gluten free and take vitamins to supplement my deficiencies. That’s wonderful to know!

 

 

No, I am not a hypochondriac… I suffer from Celiac disease!

Happy 5 year anniversary to my loving, wonderful husband who is also my best friend. The past few years have been quite the journey and I don’t think I could have gotten through everything without his never ending support.

We had a $50 gift card to Cameron Mitchell and a $20 gift card from Open Table (which is an awesome reservation app) – so spending a bit more on dinner for our Anniversary didn’t seem that bad. Ocean Club is pricey. 2 drinks each and dinner for 2 was $120 plus tip.

Ocean Club at Easton Town Center is a celebration restaurant! Somewhere you go when you have something awesome to spend the money on like an anniversary, engagement or graduation. I just love this place. All of their menu’s can be found online. I think their gluten free menu is pretty extensive!

Ocean Club Gluten Free Menu
Ocean Club Gluten Free Menu

I don’t like that they took my absolute favorite meal off them menu – MahiMahi. It was the best I’ve found since Aruba on our Honeymoon. But they offer tons of other seafood, fish and steak items. Their regular menu is  3 pages or so – this picture is just of the gluten free options!

Filet and Bearnaise Sauce
Filet and Bearnaise Sauce

I decided on the Filet. Cooked to perfection, it melted in my mouth. Delicious!

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Blackened Snapper

Aaron went with the Blackened Snapper and said it was the best meal he’s had in a really long time.

We shared 2 sides – a loaded baked potato and corn – both were simply delightful.

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This was not gluten free on a diet. This was a celebration dinner. We didn’t even finish that potato it was so big. I think 3 people could have shared it. The corn tasted so great. A little onion but still sweet. Interesting combo we both enjoyed.

It’s been 3 hours since we ate and I still don’t have a stomach ache or bloating. My joints feel good and I haven’t had to run to the restroom yet!

Total Success!!

Obviously I liked my dinner!
Obviously I liked my dinner!
My Desert! 2 glasses of Moscato
My Desert! 2 glasses of Moscato

We finished the night off with a trip to Barnes and Noble to check out the latest books and then a hop, skip and jump over to Swarovski – where I picked up this little gem. I LOVE it!!! Thank you Aaron – I love you.

May everyone have as wonderful of an anniversary as we did tonight

 

 

 

 

No, I am not a hypochondriac… I suffer from Celiac disease!

Looking back upon my teen years, it’s no hidden fact that I hated school. I used to skip class to go to the grocery store or mow my grandparents lawn. When I turned 17, I moved in with my grandparents to take care of them and help them around the house. My grandmother suffered from severe emphysema from smoking for over 60 years and was on an oxygen tank. It’s actually a complete shock she didn’t blow up our house from smoking while on oxygen! I just despised being stuck in a classroom all day.

Part of the issue was that I despised waking up to go to school. That was a constant battle with my Mom. Maybe because I have just been a night owl my whole life so it’s really hard to wake up at 6am when you go to bed at 2am. If you ask my mother, she will tell you story, upon story, about me writing notes on my door and locking it “being too sick” from school and days when I flat our refused to go to school. But the more I look into it, the more I realize that the Celiac is the likely culprit of this!

Most of the days I didn’t feel well but I never understood why. I just knew my stomach always hurt and I constantly suffered from diarrhea. My mom thought I suffered from severe hypochondria because it always seemed like there was something wrong with me. Headaches, exhaustion, stomach pains… you name it, I felt like I had it. We frequented doctors about my various ailments and each time she got so mad! Allergy testing, heart rhythm testing. asthma testing, cysts on my ovaries, irritable bowel syndrome diagnosis. It never ended…. or so it felt that way!

Was I a hypochondriac?

Am I a hypochondriac now?

Fast forward to my mid-20’s. Just married, promoted to manager at work… I complained about everything. It seemed there was always something physically wrong with me. The sleeping patterns started to emerge again – up all night, tired all day. Restless sleep. More like laying than sleeping!

Maggie – Our Boston Terrier Snoozing on the Couch!
Maggie – Our Boston Terrier Snoozing on the Couch!

From constant battles with headaches, tension pain, joint pain and being tired, to be bigger problems of the last few years:

  • From the time I went to the urgent care center because I thought I was suffering from a heart attack (turns out the doctor said my pants were too tight causing heartburn – no joke)
  • to the emergency room visit when my ear drum exploded in the pool (from pressure due to extreme ear wax build up – seriously) – what the hell did my new husband think?
  • to my knee surgery in 2010 – Lateral Release, no cartilage left in my joint – my knee now floats… (who has a floating knee?)
  • to my miscarriage in 2011 – that was a complete nightmare
Knee Surgery
Knee Surgery
My Nurse, Coach
My Nurse, Coach

It’ wasn’t until last year that I think everyone took it seriously. My symptoms were all leading up to the greater problem of celiac. All those headaches. All the trips to the bathroom. All the weird symptoms and health problems over the years, were likely caused by a condition no one diagnosed until I turned 30.

I read an article that said it takes 6-10 years on average for someone to actually be diagnosed with celiac disease.

Since I was diagnosed, I’ve asked my mom and sister to get tested repeatedly. She asked her general practitioner about the testing and he said if she didn’t suffer from bowel distress, she doesn’t need the test. That could be further from the truth. She has plenty of the other symptoms of the disease. This shows you how misinformed doctors are about Celiac disease.

I’m convinced my uncle had celiac disease – he died from pancreatic cancer in 2005.

2 family members on my mother’s side suffer from schizophrenia. Studies show a correlation between undiagnosed celiac disease and higher incidents of schizophrenia.

All of these signs point to problems in the family. Yet the doctor tells her she doesn’t need tested. I’m not a Phd, but I think I probably know more about celiac disease than him.

I feel like I’ve gone off on a tangent but I have a point!

Growing up I had the signs. All the signals pointed towards celiac disease but it took me countless doctors and problems to actually find someone who understood the disease to make a correct diagnosis.

Don’t discount your kids if they start having them!

If your family members don’t have bowel problems but suffer from other symptoms like headache, exhaustion or the 200 other symptoms of celiac disease… continue to educate them on celiac until they get tested!

Don’t give up on people. Don’t brush of the symptoms.

1 in 133 people suffer from celiac disease and it is highly misdiagnosed. If you have confirmed celiac, it is likely your family could potentially suffer from the same – especially children or parents.

We have to do this as a community. We have to be supportive of others and unite together to understand and encourage each other in the lengthy process. We have to help those who were like us – having people question our integrity, making us feel “crazy” with our symptoms.

This is why I created Pretty Little Celiac.