You are currently viewing A Lifetime of Un-Diagnosed Celiac: A Life Put on Hold

A Lifetime of Un-Diagnosed Celiac: A Life Put on Hold

*UPDATE: March, 2023

This post was originally written several years ago, and then updated in March, 2019.  Back then, yes, I saw celiac as the root to so many of my health issues. I saw gluten free as the solution. It was the solution to many issues! It changed my life in huge and amazing ways. 

As I transition my blog through my life journey, however, I am discovering something else that has been having a HUGE impact on my life: Limbic System Impairment. My current blogging effort is to share bits and pieces of my journey as I work on retraining my brain due to a fragrance sensitivity. My fragrance sensitivity has had a devastating impact on my life. I am ever so grateful for discovering something I’d never heard of before: brain retraining. It is providing an increasing light in my life!

Now let’s get back to my celiac post . . .

Celiac Has Impacted My Life More Than Anything Else

That may seem like an odd statement or thought, that nothing has impacted my life more than celiac. What about parents? What about family? What about children? What about marriage?

I can still honestly say, celiac has had the biggest impact.

Maybe a more correct statement would be that UN-diagnosed celiac had the biggest impact on my life. This blog itself stems from decades of UN-diagnosed celiac and the impact it has had on my life. 

My life’s direction has been directly impacted by UN-diagnosed celiac and then diagnosed celiac in many ways. You will see this through my future posts. It is through my experiences and through my passion, and through my never-ending need to reach those living the same question, what’s wrong? that propels me through this awareness journey.

*Please know this: This blog isn’t just about me. It is my life’s journey, however, that roots all past, current, and future posts in an effort to impact others who don’t yet know that their journey is being affected by un-diagnosed celiac. 

Living With Un-Diagnosed Celiac Affected Decades Of My Life

My passion to increase celiac awareness began shortly after I was diagnosed, at age 40, in September of 2000. Oh how life would have been different had someone recognized the possibility that various health issues could have been related to celiac, tested me, and directed me to a gluten-free diet. 

*(Although, if I hadn’t experienced a lifetime with un-diagnosed celiac, I most likely wouldn’t be here now, working feverishly to increase awareness.)

The effort: to reach the many still living with un-diagnosed celiac. By sharing my story (and the many stories here) we can reach others who are wondering, What’s wrong?

It’s all about planting seeds.

My Story ~ My Life

When I was finally tested for celiac, through a Celiac-Osteoporosis study, my test results were positive. Very positive. But at what point in my younger life would tests have actually resulted in a celiac diagnosis?

While I had many health issues throughout my life, none were consistent. Symptoms came and went. Symptoms varied. Of course, I do blame un-diagnosed celiac for most, if not all of the health issues I experienced, but maybe, through my younger years, I had only non-celiac gluten sensitivity. 

We will never know at what point tests would have been positive. My health and my life were hugely impacted by gluten either way. 
Debbie 2 months prior to celiac diagnosis
July 2000, two months prior to diagnosis
Debbie 17 years gluten free
October 2017, 17 years gluten free

All This and More

Asthma

Asthma was a very possible symptom.

From my first attack when I was just two weeks old and all through my preteen years, I had several asthma attacks a year. This included a LOT of missed school, several trips to the doctor, and so much worry for my parents.

*(Besides academics, how does missed school impact a child? – social development). Oh, the impacts are all intertwined like a big spiderweb. 

Skinny, Skinny, Skinny

My inability to achieve an appropriate weight was a definite symptom.

Not everyone with celiac is thin. Some can’t lose weight. Some don’t have weight issues. There are over 300 different symptoms. Not everyone looks the same.  

I remember being put on diets to gain weight. My mom tried all kinds of things. My brothers would always tease me, calling me “spider arms” or “monkey arms” – lovingly and in good humor, of course, but, none-the-less, it impacted me. I was tall for my age and skinny, skinny, skinny. No one wants to be different or teased. I actually remember envying children who could fill out the clothes they wore.

*(Besides health, how does an inability to be at a “standard” weight impact a child?  self-esteem).

Distended Belly and Stomachaches

My belly was a definite symptom. 

I recall making others laugh when I pushed my stomach out. It amazed people to see how big I could make my stomach (on my skinny frame).

From my earliest memories, until I went gluten free, chronic, frequent stomachaches. It’s hard to know what normal feels like if you don’t experience it. 

*(A child who feels unwell plays less, interacts less, and is surely not as happy as a child that feels well and full of energy.)

Chronic Constipation Through Childhood

Constipation was a definite symptom. My mom was always trying new foods and new ways to relieve this issue. She even tried sprinkling wheat germ on my food at one point! eek

If we only knew!

Pain in My Side

The pain I periodically experienced in my side was a probable symptom. 

I clearly remember having a pain in my right side (especially when walking to or from school). I remember pushing in on my side to relieve the pain. 

I also recall that same area itching as though it was coming from the inside out. My side often had a round scab from where I would scratch.

SHY!

I was an extremely shy child. A look at me the wrong way and I’d cry kind of shy

And then, as a mom I was crabby, crabby, crabby. Yup—gluten! 

Brain Fog and Mood Changes

I don’t think I even realized I had brain fog until it cleared. Once I knew I had celiac and removed gluten, that gray cloud just lifted. 

Occasional errors with gluten contamination remind me of how gluten impacts my mood—-in a very big way! This is the symptom that I am the saddest about. It grieves me because it is one that didn’t just impact me, it impacted my loved ones.

I’m not saying that my physical health didn’t impact others. My poor mom was always seeking answers to my not-so-great health. She worried about me a LOT! They went through a lot with me and for me.

My health had a huge impact on my family, (and that makes me sad). We had to shorten many camping trips due to sudden asthma attacks (and even as a young child, I remember feeling guilty about this). 

But those moods that started in my teen years and continued through adulthood until I went gluten free, make me incredibly sad. Those years of physical health was one thing. The crabby, bitchy person I know I was at times, was another.  

*My mom never got to know the me gluten free, and this also makes me sad.

Anemia and Chronic Ice Chewing

Anemia, easy bruising, abnormally low cholesterol, fatigue, leg cramps, all due to a lack of absorbing fat and nutrients properly. These were ongoing symptoms that increased through my thirties.

Did you know that chronic ice chewing can be a symptom of anemia? 

Did you know that chronic leg cramps can be a sign of calcium and/or magnesium deficiency? 

And did you know that anemia and other deficiencies can be a symptom of un-diagnosed celiac? 

Hypothyroidism

I discovered that I was being impacted by another auto-immune disease, hypothyroidism, about fifteen years before my celiac diagnosis.

The longer a person suffers from undiagnosed celiac, the more likely they are to develop other autoimmune diseases. 

My story: Thyroid Disease and Celiac: My Journey

"IBS" that wasn't IBS at all!

In fact, let’s just remove the “I” from that particular diagnosis. BS indeed! That’s the road I was taken down for far too many years. 

“IBS” As a young adult, and then for several years. Doctor after doctor, meds and more meds . Being told I was too stressed. (YES! because I was sick!). I struggled to hold onto weight. Sicker and sicker, the symptoms of malabsorbtion take its toll.  But oddly,  I didn’t think of myself as sick.  I just was.

Finally, in my early thirties, it was a struggle to get to 120 pounds. I remember standing on the scale and reading “114,” my lowest point. At 5’10” I was far too thin. (I was 5’10” at the time. Osteoporosis and scoliosis have shrunk me nearly two inches.)

Doctors always said, “nothing’s wrong.” And now, looking back, I just want to yell at them all–SOMETHING WAS WRONG.  But more, I want those who are being told the same thing, (that nothing is wrong) to request a test for celiac!

I could go on and on, but after years of “IBS” and stress management pills, and anti-diarrhea pills, and even having accidents in my sleep, having me think I surely had cancer, even this (the diarrhea) eventually went away….

Osteoporosis

And then I was diagnosed with osteoporosis. (Osteoporosis and Celiac: My Journey to Health)

This is when I was finally tested for, and diagnosed with, celiac. – At age 40!! – After a lifetime of health issues.

While it took a lifetime, I don’t call them wasted years. Would I be who I am had I been healthy? Nope. I wouldn’t have known the extreme impact gluten had on me or the impact gluten is having on so many. 

This passion, this drive to help others avoid what I went through, is an absolute blessing.  And if I make a difference in the life of one person, it’s worth it. 

Yes, it is worth it to hear and to see the difference made in another person (and their family).

Share A Story - Plant A Seed

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

This Post Has One Comment

  1. Leslie

    I can relate to so much of this. I was diagnosed at age 59, having had many of your symptoms throughout my adult life. Especially the right sided pain. I also developed osteoporosis due to undiagnosed celiac.

Comments are closed.