Dr. FAQ: Stefano Guandalini on the Rise of Celiac Disease

Stefano Guandalini, MD, Medical Director of the University of Chicago Celiac Disease Center, talks with his colleagues Carol Semrad, MD, and Sonia Kupfer, MD, right, at the Duchossois Center for Advanced Medicine (DCAM) Wednesday, July 24, 2013, at the University of Chicago. (Photo by Robert Kozloff)

Stefano Guandalini, MD, Medical Director of the University of Chicago Celiac Disease Center, talks with his colleagues Carol Semrad, MD, and Sonia Kupfer, MD, right, at the Duchossois Center for Advanced Medicine (DCAM) Wednesday, July 24, 2013, at the University of Chicago. (Photo by Robert Kozloff)

To the general public, celiac disease and gluten sensitivity came out of nowhere in the past few years. Few people had ever heard of gluten, then suddenly grocery stores were filled with gluten free products and restaurants everywhere were touting gluten free dishes and separate menus. But to Stefano Guandalini, MD, founder and medical director of the University of Chicago Celiac Disease Center, celiac disease is nothing new. He has spent the past 40+ years studying the disease, now estimated to affect 1 percent of Americans, and working toward what he believes will be a cure within the next decade.

Science Life spoke to Dr. Guandalini recently about the seemingly sudden rise in celiac disease, what might be causing it, and what he sees in store for treatment. This is the first of a two-part interview; we’ll be posting the second half next week.

Let’s start with the basics. People with celiac disease can’t tolerate gluten, but what exactly is gluten?

Gluten itself is a protein that has been in wheat since it was cultivated about 10-12,000 years ago, when the agricultural revolution began and men began to become stable and raise their crops. It is the main protein component of three cereals: wheat, rye and barley. It comes in three slightly different varieties, but more or less these three grains contain what we define as gluten.

Human beings simply do not have the enzymes necessary to fully break down this protein, so as a result, some of these peptides, or pieces of the protein, remains undigested in our gut. If you’re healthy, this is not a big deal. They’re just eliminated and that’s it, end of story. But if you have celiac disease, these peptides are actually dangerous because some of them may cross the intestinal barrier and get in touch with the immune system, and then this starts a series of events which leads to the damage.

Celiac disease and gluten sensitivity have been on the rise recently. Why is this happening? Is there more gluten in the wheat produced today?

They are more frequent than they used to be, and it’s a common belief that modern wheat contains more gluten than wheat that was available 100 years ago, for instance, and because of this we are exposed to higher content of gluten if they eat the same amount of wheat. Well, let me tell you this is false. It’s simply not true. At the 15th International Celiac Disease Symposium last fall in Chicago, Don Kasarda, who is a scientist working for the USDA in California, presented data comparing wheat cultivars from the early 1900s with modern wheat cultivars, and he was able to show that the average gluten content was in exactly the same range, roughly between 10 and 15 percent. So 10 or 15 percent of the whole wheat is represented by gluten, and this has not changed with time.

Another common rumor is that people believe that the wheat we now consume is not the same wheat as 100 years ago because is has been genetically modified. Well let me make the record straight: There is no genetically modified wheat commercially available in any country of the world as we speak today. True, through breeding and cross-breeding—which farmers have been doing of course for centuries—different varieties have been generated, but the gluten content has not changed in quality or in quantity. So this is also a rumor which is not founded.

A third myth is that people think that we are eating more wheat in this country in general, that maybe the gluten hasn’t changed but we are eating way more bread than we did 100 years ago. Once again, Dr. Kasarda was able to produce data showing clearly that the amount of wheat consumed per capita in the year 2000 was actually half of the wheat consumed per person in 1910. He estimated there was about one loaf of bread on the average consumed per day by every American in 1900, and we now are down to 0.6 loaves of bread. So there is no increase in wheat or gluten in the wheat. We have to search elsewhere to find an answer to what is actually causing this widespread increase in the prevalence in celiac disease.

Do you have a theory as to why there is such an increase in celiac and gluten sensitivity?

I actually endorse one of the prevailing theories that goes back to the so-called hygiene hypothesis that because of the cleanliness of the society in which we live, that between birth and the first 18 months or so of life, our babies are not exposed to the same amount of antigenic load that mother nature expected, so not enough dirt, in other words. Everything is kept clean and has to be sterilized. We make sure our babies are not in touch with any dirt or put something dirty in their mouth.

Now the good about that is of course we have almost eliminated a number of infectious conditions that might’ve otherwise been predominant. But the bad news about this habit is that our gut immune system, which develops and directs the development of the whole immune system of the body, not being exposed to that kind of antigenic load by bacteria and other compounds that were supposed to be there, has developed in a way in which its response is skewed towards developing autoimmune and allergic diseases.

Celiac is an autoimmune condition, and it is not the only autoimmune condition that is increasing in prevalence. For instance, type 1 diabetes is following the same trend too. So I think this theory has some reason to be believed, and there are some data and epidemiological support for it. For instance, in developing countries where socioeconomic conditions don’t allow for this extreme cleanliness, they almost don’t know the existence of autoimmune or allergic conditions. And when the same country develops, for instance like in northern India where this has been documented, then this disease is there to strike.

How many Americans do you think have celiac, either diagnosed or undiagnosed?

The current estimate is a number close to 1 percent. Therefore out of 300 million Americans, you can roughly expect about 3 million of us have celiac disease. The problem is that only about 15 to 17 percent or so of the expected celiac cases are actually known, so roughly 85 percent of those that have celiac disease in this country are not diagnosed, and this is a problem. We are lagging behind the rate of diagnosis in other countries. For instance, in the Scandinavian countries, the rate of diagnosed patients is around 40 percent. Even there, though, the majority of those that have celiac disease remain undiagnosed.

Why are so many people undiagnosed?

One reason in this country is lack of awareness by physicians and the general public, although this is increasing, I must say. But the other is that with time we have come to learn that celiac disease can present itself with minimal, and sometimes even no symptoms. So you may have full-blown celiac disease, like your intestine being damaged, and yet have no symptoms. We call this silent celiac disease. It’s a well-known presentation, and we have come to learn about it by screening patients that were at risk for celiac—for instance, first degree relatives of celiac patients—or patients that have other conditions that are known to be often associated with celiac, like type 1 diabetes or down syndrome. And if you have no symptoms you don’t go to the doctor and ask to be screened.

Do you think one percent of the population with celiac is more, less or the same as 50 to 100 years ago?

Looking back, studies have shown that the prevalence was actually only 0.2 percent in the early 1950s. So there is an increase, a doubling about every 20 years in prevalence. This is exactly the same rate of increasing prevalence that has been found in some European countries, so this is a general phenomenon that we have seen everywhere. Whether it will continue to increase at this pace, so in 20 years we’ll have 2 percent instead of 1 percent, I can’t tell you. I don’t have a crystal ball here. But it’s reasonable, unless we understand fully what are the factors that cause this increase.

What worries me more than increased prevalence is the fact that 85 percent of Americans remain undiagnosed. I think we all can do a better job in thinking of celiac disease every time there is a condition—and there are many—that will suggest it. We need to do a better job in screening for celiac disease.

Why do you think diagnosis is so difficult for celiac?

Diagnosis of the disease is both difficult and easy. It’s easy if you have in your mind a high degree of suspicion for this condition, because celiac disease can present itself with a variety of symptoms. We used to call typical or classic presentation the gastrointestinal symptoms, mostly chronic diarrhea, abdominal pain, weight loss, or in children “failure to thrive.” This still of course remains the way in which celiac disease can manifest itself, but we have learned that there are so many other ways that celiac can present itself, and many individuals are not mindful of that. Colleagues should be paying more attention to the many different ways in which celiac can present itself. For instance, joint pain: Six percent of children that have arthralgia or even arthritis, obvious objective inflammation of their joints don’t have juvenile rheumatoid arthritis, they have celiac disease that is responsible for that. In diabetic children, 10 percent of them have celiac disease. If we don’t screen these individuals, we will never know if they have celiac disease. It requires a high degree of suspicion and knowledge of the fact that celiac can present in many different ways, and listening to the parents when they tell you.

This is part 1 of a 2-part interview with Dr. Guandalini. You can find part 2 here, on the gluten free diet, the FDA’s decision to regulate gluten free labeling on foods and what he sees in store for a possible cure.

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About Matt Wood (450 Articles)
Matt Wood is a senior science writer for the University of Chicago Medicine and editor of the Science Life blog.

32 Comments on Dr. FAQ: Stefano Guandalini on the Rise of Celiac Disease

  1. My daughter was 5’10 at age 16 and never had diarrhea. The abominable pain was so bad we ended up in the emergency room three times before her diagnosis. We had never heard of celiac’s. The MD was reluctant to test for it because of her height and overall health, and lack of diarrhea. Finally after 9 months and numerous other mis- diagnosis (menstrual cramping, muscle spasms, etc.) she was diagnosed with Celiac’s. Looking back at her life I think her most revealing symptoms were hair that never grew (just to shoulder length at age 16) and began falling out in her teens and horrible teeth (three root canals and almost every other tooth having a cavity despite good dental hygiene). I think dentists and doctors need to be looking for these more obscure symptoms. I know that my daughter would have had a much better senior year if she had been diagnosed earlier.

    • Cindy Rhoades // February 6, 2014 at 9:16 am //

      Jenni – so glad you brought up dental problems. So many times this goes undiagnosed as Celiac and I think dentists are more uninformed than a lot of the doctors. I speak from experience. So as we speak of Celiac, we should always try to include dental problems as a symptom of Celiac Disease.

  2. Very informative. My daughter was diagnosed 6 years ago after suffering for 7 years. Look forward to part2

  3. I was only diagnosed after I got Lyme Disease and after treatment was still not feeling well. ANA Antibody test was elevated, tested for all autoimmune diseases and tested positive for Celiac, biopsy showed stage 4. Was always told I had IBS.

  4. I have been dx with celiac disease along with cfs (viruses active in my body, neurologist believes my body so busy attacking gluten; viruses such as EBV, Varcella Foster, Herpes Complex became active)…I have a cousin who was dx with ms at about the same time as I was dx with Celiac (many of the symptoms are the same in the beginning), my question is I am encouraging her to go to the University of Chicago regarding her MS but wonder if possible for her also to be checked for Celiac by UC too. Her MS is progressively becoming worse has now lost most mobility in her right side….she was in her late 40s when dx with ms…i just wonder if she also has celiac and if went on gf diet would it help as least slow the ms….

    • Cindy Rhoades // February 6, 2014 at 8:11 pm //

      Kathy have you cousin check out Dr. Terry Wahls. The Wahls Foundation. She has MS, and went from being wheel chair bound to riding a bike. Definitely worth a try. A lot of personal testimonies that give hope!

    • I have MS…I eat no gluten/dairy/soy/sugar…take vitamins/good oils and LDN. 5000IU of Vit D3, 2000mg of fish oil, Vit C, zinc, Amour thyroid (don’t go by TSH, but by free T3), HCl and Now brand- Super enzymes with meals, dairy free acidophilus. Vit B12 methylcobalamin shot under the tongue kind 5000mcg or shot. No heated oils or dehydrated food or GMO corn/soy/canola oil. I eat organic and nothing in a box with a label. I do EDTA/DMPS IV chelations to remove heavy metals. Hair tests may show good mineral levels and heavy metals. The whole family tree maybe Celiac.Tests may not work to diagnose Celiac. Gluten may make the immune system go down and make antibodies to the thyroid. MS people can be helped. Mercola.com site has MS people helped by Alternative medicine. 5000mcg of biotin, alpha lipoic acid, milk thistle, Vit C and E and more may help. I can’t eat saturated/monounsaturated fat. I eat meat 2X a year..meat clogs my blood vessels..can’t have coconut oil or flax or olive oil. I take 2000mg of fish oil, 2000mg of evening primrose oil, 2000mg of lecithin, krill oil, phosphatidylserine/DMAE, CLA, Nature’s Plus- Source of life multiple and more. Alternative medicine doctor may help. Best wishes.

  5. Amy Izzett // February 6, 2014 at 8:39 am //

    My son was diagnosed at 19 MONTHS old with Celiac following being extremely ill. Doctors have been unable to truly figure out whether the Celiac played a part in his significant illness (sick for 6 weeks… finally found campylobacter bacteria in stool… then gallbladder- with gallstones! – burst and he became septic). Being gluten free has changed his life (along with the amazing surgeons at Boston Children’s Hospital). He doesn’t even look like the same child, as he was definitely “failure to thrive.” Looking forward to reading part 2.

  6. After YEARS of digestion problems and countless doctors telling me I have IBS (with no advice/help) I had just resorted to knowing I would NEVER feel better. Then after talking to my neighbors that have celiac’s they suggested I eliminate gluten from my diet and see if it helps. They gave me my life back! For the last 6 months I have felt AMAZING!! It saddens me that doctors that we trust to help us haven’t or can’t. I share my story constantly to try to helps others as my neighbors helped me.

  7. Per https://www.facebook.com/permalink.php?story_fbid=10153853463345171&id=209766919069873&stream_ref=5 in which the Wheat Belly team said “That’s correct: There has NOT been any major shift in gluten quantity. But there has been a change in gluten STRUCTURE–big changes.”

    Could you kindly comment on such changes?

    Thanks, Martin.

  8. Would love to hear Dr.G address the autism-gluten connection

  9. There are a number of flaws in this research, 3.5 feet tall to 18 inches, regardless how you accomplished it, it is different. interesting that there is so many more people suffering from intolerance, sensitivity, and cecliac in the last 50 years. Guess when the changes were made. Ok maybe the statement of the hyderdised wheat having 10 to 40% might be an exaggeration or maybe it is that bread manufacturer us essential wheat gluten in addition to what they start with in the bread recipes,.

  10. Can someone advise what is the best and most accurate way to test for Celiac? Endoscopy?

    And did you all need to remove all grains from the diet (due to other grain proteins that allegedly create almost similar reactions as gluten), or removing gluten from your diet was enough?

    Thank you!

    • Hi Ivana, the Celiac Disease Center website has an FAQ section that answers these and other questions about diagnosis and diet. Here’s a link: http://www.cureceliacdisease.org/faqs

    • Dr. Fine stool sample test and cheek genetic test may help diagnose Celiac..but blood tests and biospies may not help. Just don’t eat gluten (wheat/barley/rye..oats) for a few weeks and then eat it again and you may tell, but sometimes it is more silent and people just get health issues from it like Diabetes/lose hair/depression/low thyroid/ADHD/fibromylagia/low energy and much more. I need no gluten/dairy/soy/sugar…vitamins/good oils and LDN to be ok. They told me twice I was not Celiac when I am and it saved my life to do the Celiac diet. I felt 20 years younger and had 1000X more energy when I didn’t eat gluten for 2 weeks.

  11. I searched for answers to my symptoms for many years, about 6 or 7 years ago I had an endoscopy (not for celiac in particular) and they chose not to do a biopsy because it looked normal to them. Same symptoms, but many more 6 or 7 years later I had another endoscopy that dx me with Celiac Disease. I wrote a research paper on it for a class if interested.

  12. Reblogged this on Celiac 411 and commented:
    A very interesting article regarding Celiac Disease. I am sure that you have your own opinions regarding the increasing prevalence of Celiac Disease, as do I, but to read the findings of a well known doctor in this field has to make one ponder a little more than normal. Even more exciting is the mention of the possibility of a cure in the future!🙂 Enjoy!

  13. Very interesting, I look forward to part 2. I was diagnosed in 1997, after years of usual Celiac problems.
    Cant say I felt much better after going strictly GF.
    But completely removed normal GF problems after starting GF diet. Am 59 btw.
    Never hear of dental problems & luckly don’t suffer these problems.
    G.F.
    Great Britain

  14. For more info on dental enamel defects occurring due to celiac disease, check out Dr. Malahias excellent info. I have no connection to Bridgeworks Family Dental Center or Dr. Malahias. I was lucky enough to hear Dr. M present this info at Gluten Intolerance Group Educational Conference last year. All dental professionals should have this knowledge!!

    http://bridgeworksfdc.com/page.php?t=celiac

  15. “For instance, in developing countries where socioeconomic conditions don’t allow for this extreme cleanliness, they almost don’t know the existence of autoimmune or allergic conditions. And when the same country develops, for instance like in northern India where this has been documented, then this disease is there to strike.”

    But they don’t do a whole lot of testing for diseases like CD, as developing countries lag behind the West in their resources and awareness for diagnosis. Where is the evidence to show proper, controlled samples of the population being tested for allergies and disease? Without those, I think this theory is a little rash.

    • I agree. I’d like to hear some more evidence for this theory if it’s really gaining so much support. Also, what constitutes ‘extreme cleanliness?’ I grew up in a very messy home, surrounded by cats since infancy. I know of another diagnosed celiac who grew up working on a farm – she got filthier than I did on a regular basis! Do you need to be surrounded by human excrement or something to not get celiac? I just don’t get how my upbringing, or so many others with celiac, could be described as ‘sterile’ by any means. But perhaps it means something much more specific, such as how we prepare our food, or what we use to clean our clothing, etc. – I’d like to know. We had clean running water, but I was not the cleanest child in my class at all. And I’m the one with celiac.

    • HI, If an Asian/Mexican/Indian/African person eats gluten/dairy/GMO soy/sugar..they may be hurt fast. White Americans maybe used to feeling sick and think it is normal. The American Indian..Diabetes/depression/Alcoholism can be due to food when they were put on a reservation. American food hurts people. Low sunlight makes the immune system go down…low sunlight heritage they maybe born Celiac. The rest may become like a Celiac person if they are new to eating these foods.

  16. Just 2 comments.
    There is added gluten to every bread on the shelf these days just trying to buy some for family me meres w/out celiac is really painful.
    ALso, I know of many health care practitioners – not MD’s who suggest patients to try going off wheat to “see how they feel” & if they feel better they won’t return on it for the amount of pain is hugely reduced sometimes, completely gone. I think that posses a huge problem for undiagnosed patients.

  17. Reblogged this on Deglutenized and Delicious and commented:
    Interesting information about Celiac disease.

  18. As for the myths: It says we eat less bread, but it doesn’t account for processed food. Factor that in and I bet people eat MORE. It says there is no genetically modified wheat, but there has been cross breeding. Yeah. That is what we are talking about. No one claimed it’s GMO in a lab, it was plant cross breeding from 40-50 years ago that brings us today’s wheat. As for no more gluten, I have seen studies on both sides. Too, it’s not just gluten, it’s gliadin which is higher in today’s wheat. Not impressed with this “scientist”

    • Yes, I had wondered about that, too. Sure, we might eat fewer loaves of bread than we used to, but read the ingredients on any random ‘instant’ meal in the grocery store and see how many contain wheat products! I also would like to know if and how these processed foods have any effect on us. It’s like we all know they’re kind of bad for us, but in what ways? There’s something else new about our diets.

    • HI, Gluten/GMO may hurt the gut lining. Family trees may spread Celiac. Most are undiagnosed and get worse each generation in health. Taking drugs to cover symptoms is not the answer. I need no gluten/dairy/soy/sugar…vitamins/good oils. LDN helps block Celiac..but the diet is still needed. Eating white bread may hurt less than whole wheat that many changed to trying to be healthier. Sour dough bread may help, but no gluten is best. Some try to use Apple cider vinegar and fermented vegetables and probiotics to try to deal with undiagnosed Celiac.

  19. I was diagnosed with Celiac at age 35. As a teenager I was anemic and given iron pills. I became severely anemic once again in my 30’s. Doctors tried for about a year to increase my hemoglobin before finally sending me to a hematologist. The blood test showed that I was a candidate for Celiac Disease. Further tests confirmed the results. I had the “silent celiac,” but thankfully it’s not silent anymore. I no longer can tolerate gluten in any form, which is a blessing because I know when I have gotten it into my system. I am grateful for my diagnosis!

  20. When will the next installment be posted?

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