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Infertility: A Possible Celiac Symptom

Infertility: One Of The Many Possible Symptoms

My purpose for posting personal stories is to promote celiac awareness. With this awareness is my hope for increased celiac testing. Living with un-diagnosed celiac means living with unnecessary health struggles. For Lila, living with undetected and untested symptoms leaves her wondering if this could be the cause for her devastating miscarriages and subsequent infertility.

Everyone with celiac (or nonceliac gluten sensitivity) has a story. For every story told, there is increased potential that others living with undiagnosed celiac will recognize their own symptoms and their own need to be tested. 

Keep talking, Keep sharing, Keep planting seeds

Lila's Story

Celiac Symptoms For Decades

Lila lived with various symptoms for years. Unfortunately, this is not uncommon. Each symptom often gets viewed and treated individually. It isn’t until a person gets a correct diagnosis and proper treatment (removing all gluten) that they can look back and see just how much gluten was interfering with their ability to enjoy a healthy life.

It is my hope that eventually more and more physicians will start connecting these dots more frequently and start making celiac testing more routine. 

Lila’s list of symptoms was long, but not uncommonly long:
  • IBS for 30 years (30 years!)
  • Lactose intolerance and other digestive issues since childhood (since childhood!)
  • Six years of rashes prior to diagnosis. (Dermatitis Herpetiformis) 
  • The devastation of two miscarriages followed by infertility
  • Gallbladder removed
  • Deficiencies in iron and vitamins D and B12 
  • Depression and mood swings through her teen years and periodically as an adult
  • Perimenopause at the young age of 40, followed by menipause by the young age of 47.

During the year before diagnosis, Lila experienced brain fog, joint pain, bone pain, blurry vision, memory loss, extreme fatigue, energy depletion, and extreme mood swings. 

Question For Her Doctor: Could It Be Celiac?

Some time after she turned 40, and after a hernia operation, Lila started experiencing rashes. Having heard of celiac, she started recognizing some of the symptoms in herself. She asked the doctor, “Could I have celiac?”

He told her she didn’t have celiac because she wasn’t underweight.

We trust our physicians’ education, so when he told her “no,” she blamed her symptoms on perimenopause.

And that’s the fact of things–All TOO OFTEN–our symptoms get blamed on something else.

Maybe an, “I don’t think so, but let’s test and find out,” might be a better answer. 

“You’re not skinny,” is not an excuse for not testing.

Heavy sigh and frustrated expression on my face right now as I am typing. Actually, its anger. Yes, I’m angry!! Isn’t it time that doctors come out of the dark ages and recognize that being overweight CAN BE a SYMPTOM of un-diagnosed celiac?

Infertility issues CAN BE a symptom of un-diagnosed celiac.

Even though she was over 40 and in the stages of perimenopause, Lila knows she was still in childbearing years, and she wonders.

This articlefrom Beyond Celiac, encourages women struggling with unknown fertility issues to be tested for celiac. 

An Answer -- Finally!

A half dozen years later, give or take, in January of 2013, Lila discussed her symptoms with her physician again (not the same one who told her she did not have celiac). He listened. And he honored her request to be tested. 

The results of the celiac panel indicated a need to follow up with a gastroenterologist. She had a biopsy in March of 2013. Diagnosis: celiac. 

Her villi were completely atrophied. Her diagnosis was clear even before the pathology report.

Good-Bye Gluten, Gluten-Bye also to . . .

Once gluten free, Lila finally discovered what it was like to feel GOOD!

Several years of burning, itching rashes: GONE!
Mood Swings: Gone
Bone and joint pain: Gone
Digestive issues: Gone
Fatigue: Gone

Gluten contamination reminds Lila what she lived with every day before going gluten free: knee pain, digestive issues, constipation, fuzzy vision, brain fog, mood swings, fatigue.

So often we don’t realize that what we’re feeling is sick! How can a person know what it’s like to feel rested if they never experience it? Fatigue and pain become normal. And this was the case for Lila. “I figured this was just the way it was for me.”

Thank you Lila, for sharing your very personal story.

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Check out the Celiac Stories page for dozens of stories.
Be sure to request celiac tests before removing gluten from your diet.

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