Published by
Stanford Medicine

Autoimmune Disease, Chronic Disease, Nutrition

From frustration to foundation: Embracing a diagnosis of celiac disease

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases will share their unique stories; the latest comes from celiac-disease patient and expert Alice Bast.

The day I was diagnosed with celiac disease was the best day of my life.

People always react with surprise when I tell them that. They ask how I can consider being diagnosed with an autoimmune digestive disease such a positive milestone. And I tell them it’s because that’s the day I got my life back.

In hindsight, I believe a vacation to Mexico played a role in triggering the disease. You see, celiac is a genetic condition, so you have to have a genetic susceptibility in order to develop the disease. But there’s something else needed to trigger the onset: an environmental factor, usually some type of emotional or physical stress. There’s little known about it, but in my case, I believe a parasite that I caught on vacation was my trigger. I was treated, but after that, things were never the same.

My husband and I were starting a family, and my oldest daughter was born perfectly healthy after a normal pregnancy. My second pregnancy, though, was nothing like the first. Early on, severe fatigue set in. I was constantly weak and rarely got enough sleep, as severe diarrhea, joint pain and migraines kept me awake at night. No matter what I did, I lost weight. Two weeks before my due date, I lost my baby.

Over the years, I went on to have multiple miscarriages before finally delivering my youngest daughter, who weighed only 2 pounds. For eight years, I visited an incredible amount of doctors – 22, to be exact. No one knew what was wrong with me. At 5’9″, I had wilted to a mere 105 pounds. I thought I was dying. My mother died of pancreatic cancer, and I thought I had cancer too, somewhere - but where? When and how would I find it, and would it be caught in time?

It wasn’t until talking to a family friend, a veterinarian, that I realized that what I was eating could be the problem. She mentioned celiac disease and said that animals can have reactions to wheat. Still on my quest for answers, I visited my 23rd doctor. “Here’s my arm,” I remember saying. ”Give me the blood test.”

Sure enough, the results came back positive for celiac disease. Finally. After eight years of struggling, I had my answer. There’s no cure for celiac, but I was told that by adopting a gluten-free diet and ridding myself of anything derived from wheat, barley, or rye, my health would return and I could live a normal life. And it did. And I did.

But my story doesn’t end with my diagnosis. That’s where it starts.

I enthusiastically accepted my diagnosis and took on the difficult task of eating gluten-free. No more pizza, pasta, bread, soy sauce, cakes… the list goes on. But I was willing to make the switch to reclaim my health. What bothered me the most about my diagnosis was the thought that other people who, like me, don’t represent the “typical” celiac patient (I wasn’t short, I wasn’t a child, I looked fine), were out there suffering and no knowing why. I had lost my babies, and I was determined to prevent the same thing from happening to other women.

The doctor who diagnosed me retired from his practice, so I switched to a new gastroenterologist, Dr. Anthony DiMarino. Together, Dr. DiMarino and I dug into European research studies and became convinced that the untreated celiac had caused my fertility issues. My commitment to spreading celiac awareness grew stronger. I had to get the word out to people in every way I could. And, so, in 2003 the National Foundation for Celiac Awareness (NFCA) was born.

Years later, I’m still as determined as ever to tell everyone about celiac disease. I’ll stop people in the grocery store to talk to them about the gluten-free food in their shopping carts. I’ve traveled all over the country to host events and speak to doctors to tell them about the realities of celiac disease and that it might not appear as they imagine. With an estimated three million Americans living with celiac and 85 percent of them remaining undiagnosed, it’s my duty to tell people about it.

I don’t want other women to experience the heartbreak that comes with losing a baby due to undiagnosed celiac disease. And I don’t want people to spend years questioning why they’re suffering from depression, digestive issues, infertility, migraines, fatigue or even anxiety. There’s an answer, and that answer could be celiac disease.

Photo by vaRiax_

Alice Bast is widely considered to be an expert on celiac disease and the gluten-free lifestyle. She is the founder and president of the National Foundation for Celiac Awareness, a nonprofit organization dedicated to driving diagnoses of celiac disease and other gluten-related disorders and improving the quality of life for those on a lifelong gluten-free diet.

7 Responses to “ From frustration to foundation: Embracing a diagnosis of celiac disease ”

  1. Mark Nelson Says:

    Thank you for the nice article. My daughter was diagnosed with Ulcerative Colitis when she was 11 years old. Ended up having her large intestine removed. She ended up with a j-pouch.

    She was always under a lot of medication until she took control of her diet and went gluten-free. She is now under no medication.

    Sara is a chiropractor and helping many people.

  2. Denise Says:

    I felt the exact same way when, after many years, I finally received my diagnosis of Celiacs disease. For at least the last 15 years I can remember dealing with the symptoms and not understanding why I was experiencing them…. Everything from severe abdominal pain and distension, migraines, low iron and fatigue. Every year at the doctors office I would explain my abdominal and gastrointestinal symptoms and be told in response to eat more fibre such as whole wheat products. It wasn’t until I had such severe pain everyday, and noticing that the onset of my symptoms coincided with the food I ate, that I discovered my sensitivity to gluten and asked my new family doctor to check for celiacs disease. Later when a gastroenterologist did an intestinal biopsy and told me the results confirmed I had Celiacs, it was such an incredible relief to finally have an explanation for my symptoms, as well as the knowledge and ability to now be able to take back control of my life!

  3. shelly Says:

    I ditto all You said and to add it killed my gallbladder!,.caused hiadle hurnia, i just took my blood tests for it today,. but ive been suffering for sooooooo soooo many years sooo many docotors!! IBS THEY SAID,. MOM about died with the gangrene galbladder its how i found my bad as well,. didnt know and none of the docotors were telling,. i kept telling them all the symtoms and yet it took ask.com to find it for Me,.. i know this is what I have,. infact could be the poster adult of it,..and i feel just like you HAPPY HAPPY i also thought and still at this time very sick,feels like i am slowly painfuly dying . im 6ft tall and now 120 ,..im going gluten free now not waiting, dang doctors specilists all did the same thing more fiber eat less!,..even looking at me melting away,……i sat infront of my doctor who said i was fine after some tests (some years back) with his happy face,..i said look at me im a 6ft tall woman who went from a pudgy 220 to 120!!!!!!,. more fiber more specilists who also gave me other fibers,..on top of it being 50 alot was blamed on menopause to which they also did nothing yet i lay in bed and the pain would hit in the gut and the sweat would pour puddles,..the waking up dhydrated and legs cramped so bad its almost imposible to stand,..ticks,..nervious,.sensitive to sound taste,.. oh gosh its gone on so long the docotors have treated symptoms and never what was wrong,..they almost killed me. ive layed in bed at night many times excepting the fact i might not wake up,..but now I have hope,..

  4. Angelika Says:

    I agree! It was like “getting my life back” when I was finally diagnosed correctly (for me, it’s Ehlers-Danlos Syndrome – a genetic defect of connective tissue). For so long, I had been locked in an unwitting struggle against myself, trying to resist what I knew inside was true, berating and punishing myself for limitations that were set at birth by a roll of the genetic dice.

    I reported my chronic pain and fatigue to one doctor after another, but even specialists couldn’t find a medical cause for it. Too often, that translated into telling me “There’s nothing wrong with you” and reluctance to treat my increasingly distressing symptoms. After decades of futile complaints, how could I not seem like a weak, slothful, lazy whiner – even to myself?

    Once my condition had a name – a term I could Google – I was able to find all kinds of information about it and all its odd manifestations. I joined an on line forum dedicated to my condition and discovered a whole bunch of friendly and helpful people for whom all my odd experiences were normal. With this new perspective on myself, and I’m learning to separate the expressions and repercussions of my condition (both physical and mental) from my “real self”. I am not my symptoms!

    Though my EDS is not curable, neither is it deadly, so my goal now is to sail my life around the known limitations imposed by my “invisible condition” to avoid running aground on what were previously “invisible obstacles”.

  5. Omnivore Says:

    Inspiring tale, Alice. I had issues just like yours–and curiously, they all began after I got sick during a trip to Cancun, Mexico! After years of suffering and being told that it was IBS and fearing it was cancer, my doc finally did celiac testing–and voila. I went gluten free that day, and started healing immediately. Like you, I am thrilled to have gotten my celiac diagnosis because I now know what’s really wrong and can do something to control my health. I went from feeling like I was dying to feeling completely normal. What a blessing!

  6. Robert Says:

    Thanks for your experiences and information. I personally don’t have the coliacs disease, but have Dutch website that speaks about the disease ( http://pijnonderbuik.info ) and in my quest for information about the disease i came along this website.

  7. Sonia Says:

    I have celiac disease and even with a gluten free diet I am still symptomatic any one else experience the same???

Comment


Please read our comments policy before posting

Stanford Medicine Resources: