Did you know that if someone is diagnosed with celiac disease, a genetic autoimmune condition, that all biological relatives are at risk, not just immediate family? An estimated three million Americans have celiac disease, but 83 percent of those are undiagnosed. This poses quite a risk because if left untreated, the disease cause long-term disease complications including osteoporosis and even cancer.
That is why the National Foundation for Celiac Awareness (NFCA) is urging those with celiac disease to encourage their families to get tested by launching a new national awareness campaign titled “Seriously, Celiac Disease.” The purpose of this campaign is to educate and empower those with celiac disease to use a “Talk. Tell. Test.” approach to have a serious, in-person, one-on-one conversation with their family about the importance of testing for the disease. A simple blood test is the first step to help avoid long-term disease complications.
NFCA President and CEO Alice Bast talked to Brandi Walker about this campaign, her personal struggle to get correctly diagnosed, and her advice for families enduring this illness.
Why are 83 percent of people undiagnosed with celiac disease?
There are a few reasons why the majority of people remain undiagnosed.
A big issue is a lack of education among medical professionals. Since there are over 300 signs, symptoms and conditions associated with celiac disease, it can be difficult to spot. Plus, there is a stereotype that celiac disease only occurs in children who present with short stature and a distended belly. This is, of course, a sure sign of celiac disease, but it is by far not the only one. Celiac disease can onset in anyone with a genetic predisposition at any age. The National Foundation for Celiac Awareness (NFCA) offers a free Celiac Disease Symptoms Checklist to educate people on the disease and how to follow up for testing with their doctor.
The gluten-free diet has turned into both a fad diet and something that people poke fun at. Since it’s positioned as a weight loss diet, many people don’t take it seriously, which undermines the severity of celiac disease. Some people don’t want to be categorized as one of those people and avoid testing of celiac disease because of the stigma surrounding the gluten-free diet.
Awareness of celiac disease is at an all-time high, but many still don’t know about the signs, symptoms or risks.
Many people who think they have celiac disease are simply going gluten-free without first getting tested. This makes the official diagnosis rate much lower than it should be.
Tell me more about your personal struggle to get correctly diagnosed.
It took me eight years to get a diagnosis. I caught a parasite while vacationing in Mexico. I was treated for it, but I never felt quite like myself afterwards. To get celiac disease, you have to be genetically at-risk and many people also usually have some sort of environmental trigger, like an illness, pregnancy, a stressful situation, etc. While I can’t say for sure, I believe this parasite or the powerful medicine used to treat it was what kicked in my celiac disease.
Before I went on that trip to Mexico, I gave birth to my oldest daughter, Elizabeth, with no issues. After my bout with the parasite, my husband and I tried to expand our family and have more children. I became pregnant again, but it ended in a full-term stillbirth. I went on to have three more miscarriages. After losing the daughter we named Emily and my other pregnancies, I gave birth to my daughter Linnea, who only weighed 3 pounds when she was born. She literally fit in the palm of my hand.
In addition to my fertility struggles, I was also dealing with bouts of severe diarrhea, migraines, brittle and cracking teeth and hair loss. I developed thyroid disease and dropped to 105 pounds (I’m 5’9”). People starting thinking that I had an eating disorder. I thought I had cancer.
After 8 years, my family veterinarian mentioned that sometimes animals have issues with wheat and maybe my issues stemmed from celiac disease. I remember going straight to my doctor and saying, “Here’s my arm, give me the blood test!” Sure enough, it came back positive for celiac disease. The doctor who diagnosed me was number 23. 22 physicians could not determine what was wrong with me.
How impactful will this campaign be for every family dealing with this disease?
The “Seriously, Celiac” campaign will be huge for families affected by celiac disease. Those with a family member with celiac disease are at a much higher risk for developing it themselves as opposed to the general population. Not only will this campaign help drive awareness of celiac disease in general, but it will help drive down the undiagnosed rate. The campaign urges people with celiac disease to “Talk.Tell.Test.” with their family members.
NFCA prides itself on being in tune with the celiac disease community. After several years of talking with our dedicated community members, we saw an unmet need because many individuals with celiac disease were not successful in encouraging their family members to get tested. We conducted a multi-phase research study, which included participation from those who are diagnosed with celiac disease and family members who remained untested. We uncovered a lot of new information that showed there’s a better way to have a conversation with family members. From this, NFCA created “Seriously, Celiac Disease,” the first and only awareness campaign dedicated to exclusively helping people with celiac disease talk to and encourage their family to get tested through personal, one-on-one conversations.
So, not only will Seriously, Celiac help to increase diagnoses, but it will also help people with celiac disease have a better conversation that is more effective.
How important is celiac disease blood testing in getting properly diagnosed?
I cannot stress enough that the celiac disease blood test is of the utmost importance. Celiac disease is a genetic autoimmune condition, not a food allergy like many people think. It requires proper management and lifelong follow-up care. Just going on a gluten-free diet to see how you feel is definitely not recommended. In fact, it makes it that much harder to ultimately get a diagnosis and live your healthiest life. There are many nuances of maintaining a strict, 100% gluten-free diet and it’s not as easy as just giving up wheat, barley and rye. Wheat hides in many foods and cross-contact is a big concern. Just a crumb of a crouton in asalad is enough to launch the body’s immune response to gluten. When that happens, the body sees gluten as a foreign invader and damages the healthy cells within the body. The response flattens the villi, which are small finger-like projections that line the small intestine. They are responsible for the absorption of nutrients from food, so this damage causes people to become malnourished over time. Celiac disease doesn’t just affect the gut either – this autoimmune response wreaks havoc on almost every system within the body.
In short, an autoimmune disease isn’t something you want to manage on your own without follow-up care. People need to know if they are healing properly or if they are somehow still being exposed to gluten. My favorite example to stress the importance of getting an official diagnosis is this: If you suspected you had diabetes, would you just try some insulin to see how it goes? It sounds kind of funny, but when people just start going gluten-free to see what happens, they are essentially doing the same thing. What’s even more concerning is that many doctors are advising their patients to give the gluten-free diet a try without properly testing them for celiac disease. This can have serious consequences, especially if people do have celiac disease and are not strict with their gluten-free diet because of a lack of a formal diagnosis.
If left untreated or mismanaged, celiac disease can cause depression, anxiety, migraines, infertility, osteoporosis, other autoimmune diseases and even certain cancers. People need to be monitored to ensure other serious problems aren’t developing.
What final advice do you have for families enduring this illness?
Celiac disease is a very serious condition and needs to be treated as such, but it doesn’t mean that life is over. Sure, things change and you must be diligent about maintaining a gluten-free diet, but it eventually becomes second nature.
I think another piece of advice would be to take your disease seriously. People living with the disease know that it is serious and needs to be properly managed, but the fear of being a bother and embarrassment of the gluten-free diet often stands in the way of advocating for their needs. It’s ok to talk about celiac disease; it is nothing to be ashamed of.
For those who have a relative diagnosed with celiac disease, I would say to be open to conversations about celiac disease, especially if a loved one is trying to tell you about your genetic risk. Understanding celiac disease and taking your risk seriously could be a true lifesaver.