Celiac disease is a genetic autoimmune condition, which impacts 1 in 133 Americans, where 60% are women. It is estimated that up to 83% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions, and it takes 6-10 years for diagnosis.
In honor of Celiac Awareness Month, in this episode, Alice Bast, Founder & CEO of Beyond Celiac. She covers:
What celiac disease is, proper diagnosis, and its impact on many women's health conditions
Myths and facts about a gluten-free diet
The difference between celiac and non-celiac gluten sensitivity
Alice Bast: I am delighted to be here during Celiac Awareness Month to talk about my favorite subject which is really about women's health and early diagnosis of celiac disease and treatments and a cure for the disease.
So I have celiac disease, but I had a harrowing journey. So it took me eight years going to 23 doctors before I finally had my diagnosis. I went from doctor to doctor and each would treat the symptom malady. I had migraine headaches and I was getting Imitrex for the migraine headaches. My hair was falling out and my teeth were starting to break. Many times they said it was all in my head.
While in 1987, I had a healthy daughter, Elizabeth, four years later, I got pregnant again. During that pregnancy, things went awry. I started having terrible diarrhea where I was, again, treated for the symptoms. Then I mentioned the movement of the baby doesn't feel right. I was told I was two weeks away from the due date and the baby is seven pounds. Go home, stop worrying. You're worrywart.
I should have trusted my instincts. I suddenly felt no movement at all. My husband put his head down on my tummy. I'll never forget it. And he listened and there was absolutely nothing he said as I heard no movement. I called the doctor. They rushed me into the hospital. And sure enough, I had a full term stillborn child. She, Emily, looked totally normal. I was told that it was a fluke that they didn't know what was wrong.
I continued on this journey, having three miscarriages and again, repeated doctor visits where I was told I was healthy.
I ended up getting pregnant again in 1992. Again, I felt this slowing down and the doctor put me on bed rest. They agreed something was different and called it intrauterine growth retardation. I was told not to move my extremities and stay as still as possible. I did that for six weeks. I was as you can imagine, on pins and needles hoping and praying that I would end up having a healthy baby.
Again, that movement started to slow down. And I ended up having an emergency c-section and had a two pound baby girl, Linnea. She's now healthy. This experience was all due to having undiagnosed celiac disease.
But my journey continued. As she grew bigger and stronger and healthier, I grew weaker and weaker and weaker until I was down to about 105 pounds. I'm five foot nine. And I was told I had postpartum depression.
Finally, the family veterinarian, during a visit for my pet, said to me, “You've lost so much weight.” I explained my symptoms, and the vet said, “Well, animals sometimes have trouble with their gluten. Have the doctor test you for it.” And she looked it up - celiac disease.
I went back to the doctor - number 23 - and asked to be tested for celiac disease. He first said I was too tall. I insisted.
He tested me for celiac disease and sure enough, my antibodies came back high. I went in and he did something called an endoscopy, which they look at the villi in your intestine, and my villi was all flattened, meaning I couldn't absorb my nutrients.
I found out that I had undiagnosed celiac disease, but I had so much resistance and so many years of misdiagnosis. I really felt a sense of relief.
I went back to school at night for a degree and nonprofit executive administration, and founded the organization initially to focus on early diagnosis and ensuring that we had safe, gluten free food, but that it was available affordably, and that we had had access to that gluten free food, which is really our medicine, and spent many years doing that the first half of the organization's life.
And now our mission is to accelerate treatments and a cure for celiac disease. We've made a lot of progress, but we still have more to go.
Georgie Kovacs: I am really sorry for everything that you went through. And so much healing must have been done over time.
Let’s start with the definition. What is celiac disease?
Alice Bast: Celiac disease is a genetic autoimmune disease affecting about 1% of the population. It’s an intolerance where you really cannot eat gluten, which is the protein found in wheat, rye, and barley. When you eat gluten, it sets off an immune reaction and your body attacks itself. The villi in your small intestine are flattened, and you can't absorb nutrients.
Within the 1% of the population who has celiac disease, about 60% are women. About 40 to 50% of the people, just as you heard my story, have extra intestinal manifestations. You can have neurological problems, migraine headaches, anemia, osteoporosis. There are many symptoms of celiac disease.
To get tested, doctors run a celiac panel. And if your antibodies are high, then the doctor will refer you to a gastroenterologist. If you're at a primary care doctor, or a gastroenterologist, recommend that they go in and they do something called this endoscopy, where they look at the villi in your intestine to confirm your diagnosis of celiac disease. It is also important to get a DEXA scan to look at your bone density for osteoporosis or osteopenia and get testing for vitamin levels to make sure that you're absorbing those nutrients that you need to be healthy.
The only current treatment is a strict gluten free diet. From the minute you wake up to the time you get to bed, you have to worry about every bite of food that goes in your mouth. And it's really important for all the reasons I've talked about to get that diagnosis early.
While we have worked tirelessly with education events around the country, many physicians say to try a gluten free diet. If you had diabetes, you wouldn't try a little insulin to see if you feel better. And it's not about trying a gluten free diet. It's really understanding what's going on with your body, and so that you can be your best self.
Also, if you start a gluten free diet without the proper diagnosis, then when you take that blood test, the antibodies will not show that you have celiac disease because you cut the gluten out of your diet. Then, to verify celiac disease, you have to get something called a gluten challenge. This could be horrendous. In my own case, I remember I knew every bathroom in my office building or anywhere else I went because I had all the GI issues. The thought of going back on gluten containing food would be so difficult for me.
Georgie Kovacs: Tell us about the research Beyond Celiac is leading the charge on for celiac disease.
Alice Bast: Our Chief Scientific Officer has a daughter with celiac disease. And his background is actually in endocrinology and immunology. He put together a science plan to help us accelerate treatments and a cure for celiac disease and is looking for better diagnostics. Wouldn't it be nice if you didn't have to go on this gluten challenge?
Georgie Kovacs: How did gluten free become such a fad?
Alice Bast: When I started working with major corporations, because I was working with them on ensuring their products were safely labeled. I was working with the FDA, and the “gluten free” label used to be on the back of the package, because it meant that it didn't taste any good. It then migrated to the front of the package. It was about marketing, right?
What it really had was this health halo effect, and people associated it with health, beauty and weight loss. However, it wasn’t about it being a serious genetic, autoimmune disease. It needs to be taken seriously so that you can live your life to the fullest and be able to eat without fear.
Georgie Kovacs: I see wheat free and gluten free product labels. What is the difference?
Alice Bast: Gluten free is wheat free, but wheat free is not gluten free. Gluten free is free of wheat, right, barley and any of their derivatives. Wheat free doesn't include barley and doesn't include rye.
There are people who have wheat allergies but they don't have an autoimmune response, and it is rare.
With celiac, you have to worry about wheat, rye, barley derivatives, and cross contamination. So if one particle of gluten is that you're exposed to a particle of gluten, that will set off an immune response. It's almost the same as eating a whole slice of pizza versus that little particle of gluten can set off your body attacking itself.
Georgie Kovacs: What are some unexpected places we’d find gluten?
Alice Bast: Gluten can be found in soy sauce, licorice and playdough.
I try not to support those companies if they have those labels that say “may contain this ingredient,” because I like to support the companies that go through the certification, and I can be assured that the product is gluten free.
This does not minimize the need to eat fruits and vegetables. I like to empower people. I used to be interviewed and asked, “What's your favorite gluten free product?” And I'd say I love raspberries.
Don't forget that you have an autoimmune disease. So you might have nutritional deficiencies, and it's important to get tested for your nutritional status because you might have vitamin D or an iron deficiency. So it's important that you're also eating healthy foods and whole grain foods, such as brown white rice and quinoa. You don’t want to only eat processed food.
Georgie Kovacs: That's a great point. I've read that many who go on these gluten free diets are gaining weight because they take the gluten free version of a food and those tend to be more caloric. Then, they're not changing their diet to be healthy. What about being on a gluten free diet and dining out?
Alice Bast: Gluten free junk food is still junk food. We find that 30 to 50% of people with celiac disease are not healing properly, so they're not continuing to absorb their nutrients.
We started funding studies because I'd be traveling all over the country and around the world, and I would get sick. It was really hard to eat out in restaurants where you can't see what's going on in the back of the house. For example, you order gluten free pasta or vegetables. However, many restaurants reuse their water. If that gluten particle gets taken from the pasta water that it’s been cooked in and then they use it for vegetables, and you can then get cross contaminated and sick from going out to eat.
So it's really difficult if you're eating out a lot, or even if you're going to school, or college or university. Many kids with teenagers or young adults who are going to school are choosing a college based on being fed rather than on the program. And that never should be. I want our community to be able to go to college based on the program rather than the ability of the cafeteria to feed that student. And that's why we made this pivot to accelerating treatments and a cure. Because we found that 30 to 50% of the community wasn't healing.
The burden of the gluten free diet is not small.
Georgie Kovacs: Let’s talk about a few other myths: pesticides and gluten, those with celiac and eat a special sourdough, and the flour in Europe is different from that in the US.
Alice Bast: I get to hear all the time. I'll start out with sourdough. First of all, let me tell you that a number of people with celiac disease don't have apparent symptoms. So when you say it doesn't bother me they may not even know what their symptoms are. So they could be doing intestinal damage, yet they don't have symptoms. But for those that have, let's say GI symptoms and say, “Oh, you know, I could eat the sourdough.” It's like you're a little bit pregnant and you can never be a little bit pregnant. The sourdough contains gluten, and you should not be eating sourdough. If they come up with some more research and more data and more understanding, then that would be excellent.
As for the flour being different in other countries, the point here is gluten. You still cannot and should not eat any gluten-containing grains, no matter what country you're in, even if it's not as highly processed. Yes, we in the US have more highly processed food. What I would do is not focus on eating gluten-containing products and other countries, and focus on eating gluten free products that are healthy.
And then lastly, the pesticides. This is something I'm so interested in. We need more research. When it comes to toxins, our bodies are holding on to those toxins.
I'm looking at some preliminary data on mold research, that some people may have a whole family that's in a house filled with mold. Some people are affected and have migraine headaches and maybe even kids with behavior issues yet other people in the family don't. And it's because there is this genetic predisposition. And so how the environment affects our health, it's really personalized.
There's a lot of myths out there. You can have a lot of theories about pesticides or sourdough, but we have to bust those myths because we have to have evidence. Right now, the evidence doesn't support those myths right now.
As people report more and more information to us on Beyond Celiac, we can start to collect that data. And maybe there's something that will come out of it as we continue to study. And we'll be able to find so that they can live a healthier life.
Georgie Kovacs; How does one begin to get properly diagnosed if symptoms overlap with so many conditions - like Hashimoto’s, which is another autoimmune condition?
Alice Bast: That's the word Beyond Celiac. Thank you for asking. It goes beyond gluten, the gluten free diet, and beyond celiac disease to other autoimmune diseases. There are co-morbidities with celiac disease and other autoimmune diseases. One of them is thyroid disease, which is also under diagnosed. Another one is Type I Diabetes. There are shared mechanisms.
I want to accelerate research for treatments and a cure. Celiac disease is the only autoimmune disease with a known antigen, which is the gluten protein, which means we know when we ingest gluten, we set off that immune reaction. So we understand the trigger, whereas in some of the other autoimmune diseases, we don't know what the trigger is. So in some ways, we're good guinea pigs.
Georgie Kovacs: Let’s touch on non-celiac gluten sensitivity.
Alice Bast: The research and non celiac gluten sensitivities about 10 years behind celiac disease. So there's so much we don't know about non-celiac gluten sensitivity. We also don't have a good test. So when I talked about getting a celiac panel, once the doctor tests you for celiac disease and rules it out, then they'll go on and say, “But you might have non celiac gluten sensitivity, which means when you eat gluten, you could have the same symptoms or even worse symptoms, you don't feel well.” There needs to be a greater understanding of non celiac gluten sensitivity. But the treatment is still the same - a gluten free diet.
Generally, those diagnosed as not having celiac may be better off with an elimination diet.
But we still need to learn more about those mechanisms. Our scientists are very interested in non celiac gluten sensitivity and studying it and answering the questions that we answered about celiac disease for non celiac gluten sensitivity.
Georgie Kovacs: With celiac, it can impact women in the following ways:
Absence of menstruation
Osteoporosis and osteopenia
What I've become fascinated with is sometimes the symptoms are really small, and we won't even notice them. For example, when I read meat my nose runs. If I ingest gluten, I get little white dots on my forehead or phlegm in my throat. This is not as severe as the consequences of eating gluten if you have celiac disease, but a signal nonetheless.
Alice Bast: I suggest people keep a food diary. My first symptom if I get gluten is I actually feel like my skin's on fire. I get tingling all across my skin, but also some other foods. They don't and they don't agree with me as well. That's why I started exploring.
Georgie Kovacs: Let’s run through the diagnostic pathway for celiac disease once the bloodwork comes back positive.
Alice Bast: They get the diagnosis of celiac disease, and then there's going to be three month and a six month follow up. And at that point in time, you should get a nutritional panel and bone density scan just to look to make sure that you don't have osteopenia or osteoporosis.
I'd also throw in that full thyroid panel because it is a comorbidity with celiac disease. Many women, especially after pregnancy or any alteration in their life, end up having hypothyroidism.
Georgie Kovacs: Are there any other tips that we haven't discussed or other information that you would like our audience to hear about?
Alice Bast: If you do have celiac in your family, while 1% of the population has celiac disease, 30 to 40% of the population has the gene. But the percentage of relatives is much higher. So if anybody in your family has celiac disease, even if you don't have symptoms, you can catch it early on. My oldest daughter does have the gene - it's HLA-DQ2 or HLA-DQ8. When she goes in for her annual physical, she just has them throw in a celiac panel, because she is a first degree relative. Thus, if you have a relative with celiac disease, throw in that panel every couple years to ensure that the symptom might be really small. But if you get diagnosed early on, you could lessen those nutritional deficiencies.
Georgie Kovacs: What is your greatest hope for women's health?
Alice Bast: I thought about this question, right? I really, you know, my greatest hope it's really my greatest hope, where I can personally be instrumental in making a difference. There are, you know, there's reports of 50 million Americans alone who have autoimmune diseases, and it's on the rise. Why is it on the rise? The part that I want to play is an early and accurate diagnosis, and ultimately, treatments and options for the estimated 3.2 million Americans with celiac disease, so they can live their life to the fullest and eat without fear.
Georgie Kovacs: That is perfect. Thank you. And I'm so sorry for everything that you had to go through. But honestly, you know what, with a woman who's been through so much, you know that that's the person you want on a mission to change things because you really get it and definitely have the passion to make sure others don't have to suffer. So thank you for turning your tragedies into something so amazing. And I can tell you know, your stuff, and you're doing all the right things. And I'm so lucky to have you on this episode, and so thrilled to have met you. So thank you truly.
Alice Bast: Well, thank you, truly, and thank you for this great podcast and all the work that you're doing and helping women. It's just you know what, last, you know, doctors have, you know, you can't blame 15 minutes right now with your patients, right, those primary care doctors, so you're arming us all with information so we could be our best selves. Thank you.
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About Alice Bast, Founder and CEO of Beyond Celiac
Alice Bast’s experience with celiac disease began more than twenty years ago, when debilitating physical symptoms, multiple miscarriages, a stillbirth and intense mental and emotional strain began to take over her life. Alice struggled to get a proper diagnosis, and after visiting 22 physicians, the 23rd finally diagnosed her with celiac disease, a serious genetic autoimmune condition that currently has only one treatment—a strict gluten-free diet.
In 2003, Alice was compelled to found Beyond Celiac, a patient-centric organization serving millions of Americans. She represents the celiac disease patient voice in key government, research and industry venues. Under her leadership, Beyond Celiac has helped increase the rate of diagnosis from 3% to an estimated 50% and increased the availability and affordability of gluten-free foods, which are now on store shelves across the country. The leading celiac disease patient advocacy organization, Beyond Celiac is now accelerating research for treatments and a cure for this serious genetic autoimmune disease.
About Fempower Health and the Founder
Georgie Kovacs, is the founder of Fempower Health, the go-to resource for all things women health serving women, their providers, and companies looking to build/improve on products for women. She also hosts the Fempower Health Podcast, where she interviews experts to help women better understand how to navigate their health both day-to-day and in partnership with their providers. Her mission is to minimize the years many take to seek proper diagnosis and treatment.
Georgie founded Fempower Health after her first-hand experience with infertility and endometriosis. Leveraging this experience along with her 20+ year tenure in the biopharmaceutical industry and consulting, she leads this movement to empower women. With limited research dollars and women’s “training” to grin and bear it, both women and doctors are in the impossible position to diagnose and treat conditions with little information. Women deserve more and better information, insight and innovative health solutions.
**The information shared by Fempower Health is not medical advice but for information purposes to enable you to have more effective conversations with your doctor. Always talk to your doctor before making health-related decisions.
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