My Celiac Disease Journey - Gluten Free Retail HQ

Celiac Disease Diagnosis: 15 Years Gluten Free and Counting

My journey was long and arduous. I was miserable for the better part of 12+ years. I dealt with immense pain, unpleasant gastrointestinal issues and a degenerating body. Eventually my body gave up. I was rushed to the hospital 15 years ago. It was the summer of 2001. I endured all sorts of poking, prodding and medical testing. Finally, after six days, I received the Celiac Disease diagnosis that changed my life, for better or worse.

August 2016 marked my 15^th anniversary of going gluten free. And I couldn’t be more thankful.

For those out there who may be dealing with similar-sounding health issues described here and in upcoming posts, I encourage you to persevere and be persistent with your medical professionals. I regularly visited my PCP and various specialists to which I was referred. Unfortunately no single doctor looked at all my issues holistically to connect the dots and piece together my puzzle.

Thankfully, awareness of Celiac Disease and gluten intolerance has dramatically increased since my diagnosis 15 years ago. Huge accolades go to the Celiac support groups and foundations, their many awareness-building campaigns, and more frequent press and media coverage.

But, we’re still a long ways off as a country in regularly and routinely testing for Celiac Disease. It’s unclear whether it will ever become reality in the U.S. as in other parts of the world. But hopefully, at least, an accurate diagnosis will no longer take 12+ years of suffering and wondering “what’s wrong” as it did for me.

Celiac Disease Diagnosis: Sharing My Journey

I’m going to back-pedal some 15 years. For the first time, I will open up publicly and share some details about my more than decade-long journey to a Celiac Disease diagnosis.

For those who can relate, rejoice that we finally discovered “what’s wrong.”

For those of you who haven’t yet been tested and possibly diagnosed: If my story sounds familiar, press your doctors to run more tests. Giving up bread, pasta, cookies, cakes, brownies (sigh…) isn’t as bad as it sounds.

Celiac Disease: A Pain in the Butt, Literally

I was a pretty healthy kid growing up, nothing too out-of-the-ordinary that raised a red flag. In hindsight, I can probably chalk up some of my ongoing childhood health issues – eczema/skin rashes, poor dental health (cavities and gum disease) and “nervous” stomach – to undiagnosed Celiac Disease. But nothing was “bad enough” to concern a pediatrician.

I grew up, graduated college, and moved to Columbus, Ohio to start my first professional job. Everything was looking up for me and my career as a management consultant with a Big 6 consulting firm. Within a few years – circa 1988 – my “nervous” stomach and related intestinal issues became increasingly problematic. (Brace yourself, TMI ahead.) Symptoms including bloating, gas pains, loose fatty stools and bouts of diarrhea led to more frequent visits to the doctor.

Was It Really IBS, the Diagnosis du Jour?

My PCP said I had Irritable Bowel Syndrome (IBS), which at the time (circa late-80s) seemed to be the diagnosis du jour, especially for a young professional working a stressful job and the associated long hours. No further testing was done. No specialist, for example, a gastroenterologist (GI) was suggested. Instead, I recall some of my instructions being the following: avoid raw fruits and vegetables, no popcorn, bulk up on whole grains and fiber content – that is, eat more whole wheat and other fiber-building grains. Ouch!

I carried on with life dealing with what I thought was IBS for the next several years. During this time, I got married and had two children. As I reflect back, I was fortunate to have two relatively healthy, non-eventful pregnancies since some females with undiagnosed Celiac Disease aren’t as fortunate. According to medical reports, undiagnosed Celiacs may have a higher chance of infertility or miscarriage than the general female population.

Still, the IBS took its toll on me and became more and more debilitating. It was hard to go out socially or even run errands. There’s a constant need to be near a bathroom since I never knew when “an episode” was going to hit. I truly never associated my “episodes” and general state of just “feeling blah” with my diet or anything in particular I was eating. I continued bulking up my diet, including supplementing with Metamucil or Citrucel (pretty disgusting stuff! Sorry P&G and GSK).

Celiac Disease: If I Only Knew Then What I Know Now

Shortly after the birth of my second child, my health began steadily going downhill. A number of other health concerns cropped up:

Tremendous lack of energy and constant tiredness
Miscellaneous aches and pains, including excruciating upper back pains (eventually diagnosed as fibromyalgia)
“Concerning” lab results that included elevated antinuclear antibody (ANA) levels. This sent me to a rheumatologist, who ruled out rheumatoid arthritis but put me on lupus watch.

What? How can this be? My sole knowledge of lupus was a movie called Gross Anatomy I had seen several years earlier starring Christine Lahti. In the film, she is a medical professor with a mysterious illness that turned out to be lupus. Spoiler alert: It was terminal; she died. So you can only imagine hearing “lupus” as it pertained to my own health was downright scary stuff.

Celiac Symptoms: Why Do I Feel So Bad?

There were the IBS years.

There were the fibromyalgia years.

Then there were the lupus years.

Most days and years were just “blah” years. I try to think back and remember the years – an entire decade of my 30s – nearly lost to illness and brain fog associated with undiagnosed Celiac Disease. Looking back, it’s unimaginable that I functioned at all, let alone successfully progressed through my career and raised two extremely bright and gifted children.

Celiac Symptoms: It’s All in Your Head

A lot of people wrote off the way I was feeling as “just stress” or saying “it’s all in your head.” I wish I had a nickel for every time I heard “It’s all in your head”!

Well, I wish it were all in my head. I wish I was making this stuff up. But it was real. There was something wrong with me. But no doctor could pinpoint just what it was.

Seeking continual medical help for my ongoing “crappy” feeling and exhaustion, I remember the words uttered by my PCP with distinct clarity: “You work full-time. You have two young children at home. Of course you’re going to feel tired.”

But we’re not talking “just tired” here we’re talking down-right exhausted. Day after day went like this: Get up. Get the kids off to school. Go to work. Do all I can to drag myself through the day. Go home. Collapse into bed. There were many days I couldn’t deal with the kids’ homework or evening activities, I could only collapse. It wasn’t living at all. I wasn’t living. What’s wrong with me?

Celiac Symptoms: My List

My list of symptoms was long and varied. Among other things, my lab results consistently show I’m iron deficient. I take ginormous quantities of iron supplements. Doesn’t help. Bone density scans indicate bone loss categorized as osteopenia. I’m prescribed Actonel to restore bone loss. Doesn’t help. Miscellaneous tests point to fibromyalgia, arthritis and other joint issues. I’m prescribed Celebrex. Doesn’t help. My list of symptoms, misdiagnoses, and drug trials go on and on. Nothing helps.

What the heck?! I’m sick. I’m tired. I’m frustrated. Something’s got to help! Someone’s got to help! Please!

Hospital Stay: Knockin’ on Heaven’s Door

Flashback: Summer 2001. I caught a virus at work in July – a nasty stomach flu, or so I thought. I was bedridden for the better part of two weeks, doing nothing but running from bed to bathroom. Finally, one day – it was a Sunday – I couldn’t even get out of bed to make it to the bathroom. I was that weak and my body gave out. My husband literally had to help me up. Right then and there, he decided this wasn’t normal and it was time for the ER. And so my hospital stay begins.

Hospital Stay: Sunday in ER

I don’t remember much. A lot of it’s a blur or lost to brain fog. But I remember the highlights, or rather lowlights. They get me into an ER bed. They pull blood. Next thing I know, they sit me up asking if I can swallow these two gigantic horse pills. Simultaneously, someone’s attaching a couple of bags to my IV and I feel “whoosh” – what felt like very cold liquid washing through my body. What’s going on?

Turns out the pills were a major dose of potassium. The “cold wash” also was potassium administered intravenously. Ok. Why? I’m told my potassium level is very low. I mean dangerously low, almost non-existent. They say I probably would have gone into major cardiac arrest within 24-48 hours if I hadn’t come in.

The blood work also indicates my electrolytes are “all out of whack.” Apparently I don’t have the right quantities or proportions of anything in my body. Huh?! I recall being moved from my original little ER space to some triage “holding area” that was neither ER nor the hospital. I’m groggy and don’t remember many details of the day. But I do remember there was an on-the-spot colonoscopy involved (yay!). Results: negative. Can’t find anything there.

As the night wore on, the ER staff surmised that I was indeed probably suffering from a bad intestinal virus: “Give it time. Let it work its way out of your system.” Fortunately, my husband took a stand. In not so many words, he told them I wasn’t going anywhere until they figured out what was wrong with me. Recall, I had already been at home sick in bed for several weeks. He wasn’t taking me back there to die.

Hospital Stay: Days 1-2

The next two days were fairly uneventful. I slept a lot. I was poked and prodded a lot. I went to the bathroom a lot. And I had to capture it in something to be examined, measured and tested. Not going into details here, but let’s just say absolutely nothing solid. I was given nothing to eat or drink. At least not on Day 1.

Same drill on Day 2. But now I’m put on a liquid diet: clear broth, jello, fluids like tea, apple juice and water. I think I may be starting to perk up a bit. Then…

Hospital Stay: Day 3

I don’t feel too bad. Think I’ll go down the hall to shower and clean up (no private facilities back then). But first, breakfast. What? Oh yay. On Day 3, I graduated to solid food, nothing too crazy – Cream of Wheat and toast – but it was solid food. I ate what I could. Now off to the shower. It hit me. It hit me suddenly, so suddenly, but so harsh. Like gremlins or some evil demon taking over my body. It’s such an intense, excruciating pain. I can’t do anything but practically keel over in the shower. It was all I could do to reach for the call button. Help. This is bad. Someone has to help me.

The nurse got me back to my room and in bed. The pain is so intense. I cry. I plead for it to stop. I ask the nurse to get a doctor and quick. I think I’m going to die. Pretty sure I’m knockin’ on heaven’s door.

Please Figure Out What’s Wrong with Me!

Finally, a doctor comes. And this I distinctly remember. I can barely get the words out. Or maybe I’m scared to get the words out. I ask the doctor to lean down so he can hear me. I whisper, “You’ve got to figure out what’s wrong with me or kill me.” The pain was that bad.

Wow. Did I finally get through to someone? Do they now know I’m not kidding around? That I don’t have some lousy virus? Something may actually be wrong with me? Because later that day, the one I affectionately call the “vampire lady” comes in. But she deviates from her usual schtick. Not pulling two vials of blood this time, but six. I ask, what’s the deal? She says the doctors ordered up some “special tests” – so special that the #1 hospital in town doesn’t even have facilities to run the tests. My blood’s being sent out of town to a special lab. It’ll be at least a day or two before the results are back. Meanwhile, no more food. Back to liquid diet. Thank God for popsicles!

Hospital Stay: Day 4

A “real” doctor (sorry, all you residents), a specialist – a gastroenterologist (GI) – comes to see me today. He has preliminary results of my lab work. My blood shows I’m testing positive to “blah, blah, blah.” All these big crazy words floating around: antibodies, Transglutaminase, immunoglobulins, blah, blah, blah. The GI suspects I have “blah, blah.” Another couple of crazy words I’ve never heard of before: Celiac Sprue. And btw, you’re scheduled for another test tomorrow – an upper-endoscopy or EGD (esophagogastroduodenoscopy for those keeping track of crazy words) – to confirm the diagnosis.

Whoa? Shut the front door. Did they say I might actually have something? It ISN’T a virus. It’s not in my head. Major step forward. But now what? How do I get rid of it? Give me a pill and I’ll be on my way.

After the doc leaves, I ask the nurse: “Now what exactly did he say I have? And what can’t I eat?” This part I remember very distinctly. The nurse replies, “I think you just need to stay away from fatty foods, honey.” (Really?!) Let’s give her a break. After all, it’s 2001, the stone ages as far as Celiac Disease awareness and knowledge of the gluten-free diet is concerned.

Hospital Stay: Day 5

EGD confirms my diagnosis. I have Non-tropical Sprue or Celiac Sprue (today better known as Celiac Disease). Now what?

Well apparently, huge dietary and lifestyle changes are required. I must meet with the hospital dietitian for instructions before I can be released. It’s Friday night though and the dietitian isn’t back until Monday. Ah, a relaxing weekend in the hospital. (Except for that English Muffin they brought with my breakfast the next day. Yeah, I questioned that!)

Hospital Stay: Monday, I Get to Go Home

Day 8 – Monday: Dietitian comes to talk with me. I learn a bit about this Celiac Sprue thing I’m dealing with. I say “a bit” because the hospital dietitian told me I was just the 3^rd Celiac patient he’s seen in his 18 years with the hospital. Huh. That’s not many. So, I get some reading material and my discharge papers. Back to real life. Or so I thought.

You’re Fat: It Can’t Be Celiac Disease

I was overweight, packing on the pounds instead of losing them. I was eating at every turn – and carbing up no less – to try and get some quick energy or just make me “feel better” since I was so tired and dragging all the time. My morning routine consisted of a bagel from the in-office deli; it became my signature breakfast. Since my stomach felt sick so often, I ate bread or crackers (you know, like Saltines) thinking it would make me feel better. I felt the need to constantly eat to keep me going.

Then there’s the inactivity issue. I was never one to exercise (I hate sweating) or be active in any meaningful way. In my 20s and 30s, a demanding office job (sitting for more than 8-10 hours a day) and family life with two small children to tend to on the home front didn’t exactly leave much time to take care of myself. On top of this, who felt like doing ANYTHING with a constantly “sick” stomach (IBS) and aching body (fibromyalgia among other aches and pains)? The result: I gained more and more weight over the years and felt crappier and crappier.

You’re Fat: You Don’t Look Like a Celiac

After I was finally correctly diagnosed and returned to my PCP for a follow-up visit, I asked my doctor why he didn’t suspect or test me for Celiac Disease BEFORE I became so sick and hospitalized. His response was somewhat along these lines: “Because you didn’t present like a Celiac.” Well, what the heck did that mean?

The information junkie in me immediately began looking for answers. Apparently what my doctor meant was that instead of becoming smaller, weaker and losing weight (“typical” Celiac presentation), I was a fatty, constantly eating and gaining weight. It didn’t look like I wasn’t “thriving.”

Debunking the Myth: Overweight–Celiac Disease Connection

Well, with more research, I found more answers that make a lot of sense:

As it turns out, 40% of people diagnosed with Celiac Disease are overweight at the time of diagnosis.

Malabsorption issues related to Celiac Disease causes one to eat more and eat excessively because their body is not absorbing minerals and nutrients like healthy people.

Before going gluten free, the Celiac’s body absorbs some nutrients, but not all. So the body goes into starvation mode and holds onto everything. You eat and the body holds onto it because it doesn’t know when it will get its next meal.

Moral of the story: There are more than 200 symptoms of Celiac Disease. Some are not as obvious as the well-publicized ones. If you suspect Celiac Disease or gluten intolerance, follow up with a physician before going gluten free on your own. Otherwise, medical tests may be inconclusive.