Patient perspective: Celiac disease

INTRODUCTION — This topic was written by an individual patient diagnosed with celiac disease. It is intended to offer clinicians insight into the experience of a single individual from that individual's point of view. This description of a particular patient's experience is not intended to be comprehensive or to provide recommendations regarding diagnosis, treatment, and/or medication information. It is not intended to be medical advice or to be a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances.

For related clinical topics, please see:

●(See "Epidemiology, pathogenesis, and clinical manifestations of celiac disease in adults".)

●(See "Diagnosis of celiac disease in adults".)

●(See "Management of celiac disease in adults".)

UpToDate also offers patient education materials. "The Basics" topics are short overviews written in plain language, at the 5th to 6th grade reading level, that answer the main questions a patient is likely to have about their condition. "Beyond the Basics" topics are written at the 10th to 12th grade reading level and are intended for readers who are seeking more detail and are comfortable with some medical terminology. You can share this content directly with your patients:

●(See "Patient education: Celiac disease (The Basics)".)

●(See "Patient education: Gluten-free diet (The Basics)".)

●(See "Patient education: Celiac disease in children (Beyond the Basics)".)

●(See "Patient education: Celiac disease in adults (Beyond the Basics)".)

BACKGROUND

Signs and symptoms — My first identifiable sign of celiac disease came with the diagnosis of iron deficiency anemia in my early teenage years. The doctor wrote it off as a mostly harmless condition that affects many young women. I was prescribed iron pills and sent on my way.

At 17, a senior in high school, I began having intense bouts of stomach cramping and diarrhea. Three to four times a month, I would experience stabbing, knife-like pains in my stomach, severe sweating, and yellow diarrhea. Afterwards, I felt depleted and exhausted.

I began taking antimotility agents before attending public events or important moments where I didn't want to be experiencing these painful, embarrassing "episodes."

The episodes of severe diarrhea continued as I began my freshman year of college. I started to rapidly lose weight. I also noticed that I was more fatigued than my friends who were the same age, but both the fatigue and diarrhea still seemed manageable at this point.

Two years later, I began to have different symptoms; I felt like an electric current was running through my body, almost as if little bugs were crawling under my skin, accompanied by unbearable vertigo and nausea that left me spinning. My hands and feet would cramp into tight balls, with my fingers unable to be pulled out of a tight fist. It was time to seek medical attention.

I went to the emergency department, and a blood test revealed that I was deficient in potassium and iron. They gave me a list of foods that were high in potassium, told me to take iron pills, and again sent me on my way. I was confused because the list included foods that I was regularly consuming at the time. I knew deep down that there was something really wrong, something that this blood test did not reveal, but the doctors seemed satisfied with their diagnosis and quick solution. No one delved into why I had low potassium and iron.

My health started to quickly decline from this point forward. While friends were planning their futures and careers, I was stuck in the bathroom, bed, and doctors' offices with no answers as to what was happening, why it was happening, or how to fix it. I lost 30 pounds and began having daily, debilitating migraines with nausea, brain fog, and vertigo. Celiac disease has over 200 symptoms, and it felt like I had most of them: headaches, acid reflux, heartburn, short stature, canker sores inside the mouth, diarrhea, bloating, gas, irregular menstruation, weak tooth enamel, anxiety, depression, anemia, and neuropathy.

DIAGNOSIS AND TREATMENT

Seeking medical care — I first sought medical care when my symptoms that were once severe yet manageable became intolerable and impacted my ability to perform daily tasks.

My general practitioner said I was a mystery case and that my symptoms were probably caused by college stress or diarrhea predominant irritable bowel syndrome (IBS-D). I was referred to every type of physician for my other symptoms, was prescribed several medications, had magnetic resonance images (MRIs), electroencephalograms (EEGs), ear, nose, and throat (ENT) tests, and countless blood tests done to rule out tumors and cancer.

A gastroenterologist ultimately diagnosed me with celiac disease. This doctor ran a blood test for celiac disease, which showed my antibody levels for celiac disease were extremely elevated. He told me not to worry and that it could be a false positive. He said a follow-up endoscopy and biopsy of my small intestine were necessary as this was the gold standard for a celiac disease diagnosis. He also performed a colonoscopy.

Days after having an endoscopy, the doctor's staff called to tell me my biopsy was positive for celiac disease; I had a Marsh stage 3c, meaning the villi in my small intestine were completely destroyed and unable to absorb nutrients. I also had several stomach ulcers because I had been consuming nonsteroidal antiinflammatory medications for the daily migraines. I was in a small, college campus market picking out a snack to eat during my next class at the time I received the call. It was not the doctor who called to tell me that I had a lifelong autoimmune disorder, but rather their office staff. She said, "You have celiac disease. That means you need to eat gluten-free for the rest of your life." It felt too heavy to focus on the rest of my life, so I stayed grounded in the moment and responded, "I'm in a market now. What snack can I buy that is gluten-free?" She told me that popcorn was probably safe, so I bought some popcorn without any instruction on how to properly read the label or look for gluten-containing ingredients.

Although it was clear at that time that a strict gluten-free diet was currently the only available treatment, it was not clear that it would require a complete lifestyle change, follow-up care, and affect all aspects of my life.

COMPLICATIONS AND FOLLOW-UP — My physician told me that I would immediately feel better on a gluten-free diet. I felt so relieved to finally have a diagnosis and start to regain my health; however, it took two years on a gluten-free diet to see any improvement in my symptoms.

I was not aware of the potential complications of celiac disease. I had no idea that those with celiac disease have an increased risk of developing other autoimmune diseases, heart disease, infertility, and serious cancers: small bowel cancer and non-Hodgkin lymphoma. My physician did not mention the importance of follow-up care, potential comorbidities, or the possibility of passing the disease to my children. While I was grateful to finally have a diagnosis, I felt overwhelmed and inadequately equipped to handle the treatment.

Seven years after being diagnosed, I began to feel ill again. A new resident to the state of California, I found a new gastrointestinal doctor in the area as I wanted to check my vitamin and antibody levels and possibly have an endoscopy to confirm my villi were still healthy. Upon sharing my background and current situation with the doctor, he told me that he would do the bloodwork if I really wanted him to, but he could tell just by looking at me and pushing on my stomach that I was "young, I looked healthy, and I was fine." I doubt a doctor would say something like that to a patient with any other autoimmune disease.

COMMUNICATION — Because of my lack of understanding of celiac disease upon diagnosis, I wasn't initially sure what I needed from my provider to achieve my goal of feeling healthy and normal again.

I was given a packet and told to look up celiac disease and gluten-free online. Unfortunately, the internet is muddled with misinformation about celiac disease. It's discouraging to know that you cannot be helped by the doctor who is supposed to have a scientific understanding of the disease and knowledge of the proper treatment. Rather, many with celiac disease are basing their treatment plan on anecdotal advice from strangers online.

As the gluten-free diet is the only treatment for celiac disease, the person best equipped to help patients navigate this treatment is a registered dietitian. The gluten-free diet lacks vitamins and nutrients and is inherently low in fiber, furthering the need for a trained dietitian to work with each patient to ensure their gluten-free diet is filled with the proper nutrients.

Beyond that, the labeling laws for gluten-free packaged food items are incredibly confusing. The gluten-free label or statement for the US Food and Drug Administration (FDA) standard of what is safe for someone with celiac disease (<20 ppm) is different from the gluten-free label of a third-party certification company that might test down to <10 ppm or <5 ppm. It's imperative that a dietitian works with a patient to help them understand safe label reading.

I wish my health care providers had taken me more seriously. Many physicians told me I was "just stressed" or "it was all in my head." It is unfortunate that many women receive similar responses from male physicians as societally women may wrongly be seen as more emotional or dramatic.

I wish my physician had spent more time reviewing my family history. My mom has Sjögren's syndrome, and other family members have autoimmune diseases. I wish the doctors had explored the idea that, because autoimmune diseases are familial, my symptoms might be indicative of an autoimmune disease.

Strategies for communication

Provider communication — At the point of diagnosis, celiac disease patients should be given basic information about the disease, the gluten-free diet, and reliable resources. The physician should refer the patient to a dietitian who understands celiac disease, and together they can develop a course of action that works best for the patient. The physician should schedule a follow-up exam to recheck vitamin levels, antibody levels, and bone density. Additionally, the physician should ask the patient if they'd also like a referral to a psychological service, as the news of being diagnosed with a lifelong disease and all the changes that come with it can be mentally and emotionally challenging.

Self-advocacy — I wish I had advocated for myself more. I was so sick, weak, and tired of not being heard that I eventually "gave up." I put my trust in the doctors and their years of training and expertise, but every visit felt like a dead-end.

I think about the countless blood tests I had done during this period; for years the doctors never thought to include the simple antibody blood test in one of my panels. The doctors simply could not connect the dots between what seemed like unrelated symptoms. I wish my health care providers had taken the time to look at the bigger picture.

IMPACT — Upon diagnosis, the doctors framed eating a strict gluten-free as an easy treatment. No one warned me that just a small amount of gluten can cause symptoms that will last for days or weeks, leaving you unable to leave the bed or bathroom. Doctors did not warn me about the mental and social exhaustion that comes with this disease.

Avoiding gluten is no easy feat when dining out or attending social gatherings. People use the same knife when cutting regular bread and gluten-free bread and the same spoon to stir a gluten-filled rue and the gluten-free soup that's next to it on the stove. The croutons are removed from a salad and leave behind gluten crumbs, but then the salad is served as "gluten-free." The list of cross-contact scenarios goes on and on.

Of course, eating food is essential to stay alive, but food is more than that in our culture. Sharing a meal with someone else is sharing your time, learning more about the person across the table, and is at the core of many celebrated moments: a first date, holiday meals with family, an important business lunch that secures the deal, a birthday party. For those with celiac disease, the anxiety that is laced in trusting others to prepare a truly safe, gluten-free meal often outweighs the joy of these celebrations. It's crucial that those affected are diligent about reading food labels to ensure the products they are ingesting are gluten-free. Minimizing cross-contact exposure requires a grueling amount of planning and scrutiny. Every single meal, snack, or drink must be carefully considered.

Grocery shopping requires thorough label-reading. Manufacturer processes are constantly changing, and it's imperative to know how to properly understand gluten-free labeling or to call the manufacturer to inquire about their processes if you're unsure. It is mentally taxing, but minimizing chances of cross-contact with gluten can help avoid flare-ups and serious long-term damage, so I must never take a break.

Negative changes — Celiac disease has caused me to be the undesired center of attention in many social situations while simultaneously making me feel socially alienated. It has taken the spontaneity out of life as everything must be planned ahead of time to ensure I have safe, gluten-free food options for every meal and snack. When traveling, I must research restaurants and grocery stores prior to the trip, which can make it feel less like a relaxing vacation and more like a strict plan. Celiac disease is still not taken seriously by most in our society; over the last decade, the gluten-free diet has taken off as a fad, gaining popularity among celebrities and those without celiac disease, which has been a double-edged sword for those with celiac disease.

On one hand, the gluten-free diet craze has increased the options of safe packaged food products for those with celiac disease. However, celiac disease and eating gluten-free have been the punchline of jokes on everything from Hallmark cards and internet memes to NASCAR commercials and hair salons offering "gluten-free haircuts." No other autoimmune disease has a treatment that is concurrently a social fad and mockery.

Positive changes — Overall, I am more in tune with my body and its needs, which will lead to a longer, healthier life. I feel significantly better on the gluten-free diet but still occasionally struggle with managing symptoms and accidentally ingesting gluten. I have found support and unity within the celiac community and created meaningful, lasting relationships with others facing similar struggles. I think this community is so supportive and close because we do not feel understood and heard by society, including most in the medical community. I have learned how to advocate for myself with physicians, as this journey has taught me that self-advocacy is sometimes your only option.

RESOURCES — Receiving proper follow-up care after a celiac disease diagnosis is crucial to achieving the best health outcomes. The Celiac Disease Foundation (CDF) has an Adult and Pediatric Follow-Up Checklist to review with your doctor to check things like vitamin levels, bone density, and antibody levels for long-term care.

CDF's Label Reading Guide is also available to ensure you understand how to properly read labels and purchase safe, gluten-free products.

Advice — As with most things in life, I believe that having a positive outlook and being informed will help achieve the best results.

●Give yourself grace! A diagnosis of a chronic illness is a significant change that is stressful and can be frustrating. Be prepared for the social and emotional challenges and seek mental health guidance when needed.

●You can control celiac disease instead of letting it control you. Don't be afraid or embarrassed to tell people about celiac disease and your dietary needs. It does not define you. Life will look different, but you'll be healthy along this new journey.

●Get excited to discover new gluten-free favorites! Many foods that you probably already enjoy are naturally gluten-free such as meats, vegetables, and fruits. By incorporating these into gluten-free recipes, you're sure to find some new favorite dishes.

●Read through reliable resources and learn as much as you can about celiac disease and the gluten-free diet. Aside from time and experience, knowledge is your greatest power to successfully navigating the changes and challenges. It has taken me nearly 10 years to accept and understand the seriousness of celiac disease, and I'm still learning more every day.

●Something I still remind myself of 12 years post-diagnosis is, "You are not alone in this process." You are not alone in the diagnosis, the tough moments, the planning, the scrutinizing food labels; you are supported and have helpful resources, tools, and people available to you through organizations like the CDF. The more involved you are, the more comfortable you will feel advocating for yourself, and the more educated you will be about this topic. I am proud of how unified and supportive our celiac community is and remain hopeful in knowing we have some of the brightest researchers leading the fight towards treatments and a cure.