Why Women Must Be Aware of Celiac Disease and Myths & Facts Around Gluten

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.

I also want to mention though, that in addition to the non celiac gluten sensitivity, you can go to BeyondCeliac.org, you can look at FODMAPs because sometimes people have a problem with FODMAPs.