Living with Celiac

Three years ago this month began a journey that would lead me to you.

You see, this journey is the very reason why I am here today.  It is the reason why I eat the way I do, why I live the way I do, why I write the way I do…

And if those changes had not come into my life, you would not be reading these words today.

Chances are, without this journey I would not even be here today.

As in, I could have very likely passed away.

I was that sick.

Funny thing is, my illness began years and years ago…as long as a full 15-20 years before being diagnosed. I began treatment for various symptoms in my youth.

But no one caught it.

Instead, only my symptoms were addressed.

Iron deficiency anemia, canker sores, constipation, obesity…

Separately they might not mean anything specific, yet had anyone taken the time to put together the pieces, I wonder how quickly my ailment would have been realized.

Still, it was not until I underwent an elective surgery that things got really bad.

Food was no longer my friend.  I lost weight, which was good in one respect, but the way I lost it was not.

What little food I could keep down went straight through me.

I continued to fight canker sores and iron deficiency anemia, but went from one end of the spectrum to the other on my other symptoms.

Funny thing is, diarrhea and trouble keeping weight on are symptoms of the same illness my previous yet very contradictory ailments pointed to.

Still no one thought to dig into the reason why, so my weight continued to plummet…until I stood, 5’ 11”, 113 pounds soaking wet.

Thin, too thin.

Finally, one May afternoon I contacted my gastrointestinal doctor asking for help.  Numerous tests and one radiology exam the following June, I was sent to the hospital for an emergency surgery; ultimately reversing my elective surgery from two years prior with the hope of correcting the multiple issues I faced.

Then the rash began.

Having suffered allergic reactions to medication previously, my doctor and I both thought this reaction was surely related to medicine given me at time of surgery.  Three months and dozens of steroids later, the rash had only gotten worse and there was no relief in sight.

When I approached my primary doctor regarding the need to go through an elimination diet to determine the root cause of this horrific rash, as I no longer believed medication was the issue; his nonchalant attitude should have been a red flag, but he begrudgingly agreed to see me through it and this appeased me well enough.

Three weeks later, wheat was the first thing I re-introduced into my diet.

The rash returned almost immediately, my stomach issues within hours.  Surely I had found the cause.

When I returned to my doctor and revealed my findings, I insisted that he test me for something called celiac disease.

I didn’t know much about celiac at the time, but thanks to my son’s best friend from first grade who has celiac and his very open and kind-hearted mother who had no trouble discussing his ailment with me, I had an idea that what I was looking at stemmed beyond a mere allergic reaction.

Then my doctor asked me why, “Why do you want to be tested for celiac? It’s such a rare disease, and if you’re going to stop eating wheat anyway, I don’t really see the need.”

Doubting my own instinct I hesitated for a moment, but something inside me knew I must continue to dig. I needed to find out. I needed to know for certain if I had what I thought I had.

…and you know what? I did.  I was right. I have celiac disease.

All in all, it took several months before I knew for sure.  Even then, it took several more months for me to understand how vital it was to completely eliminate all sources of gluten from my life.

Three years later, I am still healing but on the right path.

And thus, my journey brings me to you.

Why, you might ask, is any of this important to you?

Well you see, my doctor was wrong about a few things.

Celiac disease is not that rare.

I am one of the lucky ones.  Less than 200,000 Americans have been diagnosed with celiac, yet it is estimated that 3 million Americans are living with it at this time.  95% of those Americans either have not been diagnosed, or have been misdiagnosed.  Many are at a stand-still like I was for years and years, treating the symptoms with no understanding of the root cause.

Celiac disease is not a mere allergy to wheat.  Celiac disease is an autoimmune disorder caused specifically by exposure to a protein found in wheat, barley and rye.

Eliminating wheat alone would never have solved my issue.

It is estimated that one in 133 Americans have celiac disease, making celiac not only the most common genetic disorder, but also the most common autoimmune disease. Left untreated, celiac can lead to the onset of other autoimmune disorders including Rheumatoid Arthritis, Systemic Lupus and more.  Celiac disease affects children, women and men; 30% of newly-diagnosed celiacs are over the age of 60 with decade’s worth of irreversible damage from having gone untreated.

May is Celiac Awareness Month.

Not everyone who is living with Celiac Disease is so lucky to have obvious symptoms like mine (and yes, in many ways I consider myself lucky).

Heidi Kelly from Adventures of a Gluten-Free Mom often speaks about her lack of classic symptoms, saying she lays somewhere between the definition “atypical” and “silent” celiac.  Read more about Heidi’s journey and eventual diagnosis here.

Sometimes it takes a family member being diagnosed to realize your personal symptoms even exist.

Once an immediate family member is diagnosed celiac disease, there is a 20% chance you, too will be diagnosed with celiac.  Additionally, as many as 18 million Americans suffer from gluten sensitivity which can lead to IBS, fatigue, headaches and more.

Bloggers like Wendy from Celiacs in the House, Elana from Elana’s Pantry and Kelly from The Spunky Coconut have all removed gluten from their home as a way to manage not just their own symptoms, but also the symptoms of their children and spouses.

This year, I am hoping to take opportunity to make Celiac Awareness Month a prominent feature on my page.  Not only will I continue to share delicious ways to have your cake and love it; I also hope to open the door for communication, self-realization and understanding as I share stories you have not yet heard from individuals living with celiac of all levels; some silent, some not.  Some newly diagnosed and some who are thriving long-term.

If you or a loved one has a story to share please do not hesitate to contact me directly, we would love to hear from you, too.

More than anything, especially for those who are newly diagnosed; I hope to show that no matter where you go, no matter who you are, you are not alone.  Living with celiac is more common than you know…thriving everyone’s goal.

Come walk with us, share your story and help us open the door to the millions still trying to find their way.

Thank you for being here, thank you for helping me and being a part of my journey.

xoxo,

Sunny

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Comments

  1. Sunny, what a powerful post! Personal stories always are, and nobody can convey the full impact of what having celiac disease/non-celiac gluten issues means like the person who experiences them, and likewise, what recovering from them after going gluten free means, too. Awesome post, and I am so, so happy that you finally found your answer and recovery!!! Can’t wait to read all you share here this month!! :-)

    xo,
    Shirley

  2. Linda Stoddard says:

    Amazing how similar our stories are! Quick question: how is obesity related to celiac as a symptom of the disease?

    Thanks,

    Linda

    • Great question. Given that celiac disease leads to malnutrition, many do not see the link between celiac and obesity. For me, it was a matter of feeding my body what it needed. No matter what I ate or how much I ate of it, I was starving. Literally starving. So I continued to eat, and eat and eat. No matter how much I ate, my hunger never subsided, my anemia never improved and my constipation only got worse.

      Celiac.com has a great article addressing this very issue. Here, the link between thyroid disease, malnutrition, celiac and obesity is clearly discussed. I believe the following quote is most directly related to my personal experience where untreated celiac disease lead to obesity:

      “…nutrient deficiency convinces the body that it is starving to death, which sends it into starvation-mode. Since humans need a certain percentage of body fat reserves to stay alive-and because it takes more work for the body to burn fats than carbohydrates-a body that is in starvation mode tends to crave carbohydrates and more efficiently convert them to fat for later use…” (Adams, 2006 para 9).

      It was the vicious circle of eating the wrong foods leading to malnutrition, malnutrition leading to hunger, hunger leading me to eat the wrong foods, eating the wrong foods leading to malnutrition, etc etc…that lead to obesity.

      With so many symptoms related to celiac disease, many of them on the opposite end of the spectrum from other related symptoms (obesity and trouble gaining weight, constipation and diarrhea), is it any wonder why so many have yet to be diagnosed?

      Thank you for asking!

  3. Lovely tell of your story! I’m so glad you found out, too!
    My daughter’s BFF had gluten issues suggested as the trigger for her early menopause (30s), so over the next several years, she worked on my daughter, who finally sent cheek swabs for the DNA testing : she & her 2 daughters each have double genes for intolerance! So I went GF with them, and haven’t looked back! Our symptoms were “silent:” DH, dyslexia, lordosis, low tooth enamel, anemia, migraines, mild seizure disorder, anxiety, heart palpitations, weight gain …. my daughter’s anxiety (12 years, & she was very proactive!) Gone by the 4th day of being GF!
    I lost the extra “post menopause” weight that had been creeping on, along w/ brain fog & afternoon naps! My oldest granddaughter was able to go off seizure meds after a year, and both girls (now 7 & 12) are doing better w/ moods & in school!
    With the skin issues, we need to be careful to have GF skin & hair products as well. No doc recognized my daughter’s skin problems as DH, or had any idea we were suffering from reactions to gluten! As a massage therapist, I’ve suggested several clients look into it, after they list several symptoms that I recognize as related. It’s always exciting when the DO, & begin feeling better!

  4. I’m so happy you were finally diagnosed correctly, no thanks to your doctor! Ugh, that makes me so mad when I hear about how long people have to suffer because of the ignorance of doctors.

    Here’s to continued healing. :)

  5. Thank you for sharing your story. It’s crazy how much Celiacs can mess with our body and how long it takes to diagnose it. I too had symptoms for years and it wasn’t until my stomach issues escalate did I find the root of my problem. You have inspired me to share my story on my own blog soon! Thank you for all you do and for raising awareness!

  6. I love your idea of sharing your personal story. I decided to do the same as well http://tcrumbley.blogspot.com/2012/05/celiac-awareness-month.html, and I think sharing our personal stories this month is a great way to get the awareness out there!

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  1. [...] You see, this journey is the very reason why I am here today. It is the reason why I eat …andloveittoo.com/living-with-celiac/ Share [...]

  2. [...] bringing you real-world stories about living with celiac disease.  Please stop by my page over at And Love it, Too! and see how my personal discovery and journey to diagnosis brought me to you [...]

  3. [...] The following is adapted as permitted from Brian’s own About Me post  and a virtual interview between Brian and SunnyB to honor Celiac Awareness Month.  [...]

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