Why you should care about Celiac Disease

Wheat Field with Crows (1890) by Van Gogh
There has been a troubling increase in the prevalence of Celiac Disease (CD). Certainly, there is a genetic component, but is there an environmental one too? A 2009 “study, published in the journal Gastroenterology, found young people today are 4.5 times more likely to have celiac disease than young people were in the 1950s.” By one measure, cases are doubling every fifteen years. Something is causing this increase, and I’m betting it’s something we’re ingesting.
According to a handout provided by the University of Chicago Celiac Disease Center, 1 in 133 people have Celiac disease, 1 in 56 with related symptoms (meaning if you have intestinal complaints). Interestingly, only 35% of people with CD had chronic diarrhea and 60% of children with CD were asymptomatic, which means many people are living with an auto-immune disease and they don’t even know it — though they may have other subtle problems that they wouldn’t attribute to their diets.
What does “auto-immune” even really mean? According to womenshealth.gov, auto-immune diseases occur when “body is unable to tell the difference between itself and [a foreign body].” Then “the body makes auto-anti-bodies, which attack normal cells.” The site goes on to state that autoimmune disorders affect 23.5 million Americans and are the leading cause of death and disability. That’s big.
Unfortunately, rates of CD diagnosis don’t seem to be keeping up with the increase. Many doctors still consider Celiac Disease to be rare. According to the University of Chicago Celiac Disease Center, 97% of people with Celiac disease are undiagnosed.

Three million Americans have CD. Compare that to two million Americans with Alzheimer’s. Although gluten-free living is getting more press than ever, Celiac disease doesn’t seem to make the rounds in the media. With a grandfather suffering from Alzheimer’s-like dementia, I know the toll it takes on a family. But with Celiac disease, many people suffer in silence. It deserves more attention.

Making a diagnosis is tricky. If a person tests positive through the blood test, that person most definitely has Celiac disease. But if someone has a negative result on the blood test (1 out of every 4 people with CD), that person might still have Celiac disease. Only an invasive biopsy confirms the intestinal damage associated with CD. Researchers are also finding that the number of elderly with Celiac disease is on the rise. So even if someone tested negative in the past, they may actually develop it later.

In spite of the challenges in diagnosing Celiac disease, I believe that screenings for CD should be happening way more often. Some propose testing anyone with any auto-immune disease even if they have no intestinal complaints. At the very least there needs to be more screening and testing.

On a personal note, my great-aunt, my grandmother’s sister, has Celiac disease. It was diagnosed in the 1990’s. I guess she was in her early 70’s at the time. Everyone in the family just shrugged it off — no one thought that anyone else in the family should get tested even though there is a genetic link. I’m pushing for my grandmother to be tested because of some health problems.

Further reading (I checked all of these out from my local library):

(I’m not going to touch on “gluten sensitivity,” which is different than Celiac disease. I have been tested for Celiac disease and I do not have it. I’ll share the story of why I’m now gluten-free another time. The biggest gift of the project was learning that I can’t eat gluten. I feel better now than I have felt in a long time.)

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23 thoughts on “Why you should care about Celiac Disease

  1. I wonder how much the increase in CD has to do with the fact that the wheat we eat comes from just one variety these days, whereas several generations ago there was much more diversity.

    According to Dr. Davis from http://heartscanblog.blogspot.com/2010/05/emmer-einkorn-and-agribusiness.html: The wheat of earlier agricultural humans, including the wheat of Biblical times, is NOT the wheat of 2010. Modern wheat is quite a different thing with differing numbers of chromosomes, different genes due to human manipulation, varying gluten protein composition, perhaps other differences.

    I also don't have CD, and didn't think I was gluten sensitive. But I stopped eating it and feel so much better now. Close to 30lb just dropped off in the past half year, which I have no complaints about 😉

  2. I was having horrible trouble with what I thought was IBS. I took drugs for it every day. I was tested for celiac, and it came back negative, but I did eliminate a LOT of the wheat based products from my diet, and now I don't need the meds at all. I was eating primarily whole grains, and now what wheat products I do eat are more refined I know that it is supposed to be BETTER for you to eat whole grain, but obviously, I cannot tolerate it. I cannot imagine going gluten free though. I do love my carbs. It seems like I would never get to eat anything I love if I went gluten free. I wonder if I should though.


  3. How do we know that the increase in CD cases isn't at least partially caused by increased knowledge in the medical field, leading to an increase in diagnoses? Meaning, 50 years ago, people had it, and just weren't diagnosed. I don't doubt that genetic modification and processed foods cause problems (CD, allergies, behavior issues, etc), the skeptic in me is just curious as to the other factors that can lead to an increase in diagnoses.

  4. Thank you so much for this post on Celiac disease. I was diagnosed almost two years ago after IBS-like symptoms but the doctors didn't take me seriously and just basically ran the blood test as an exclusionary measure so I would move on and accept that nothing was wrong with me! I appreciate more attention being drawn to it because many people are suffering in silence because doctors don't know enough or care enough to test or diagnose them.
    @Miranda– going gluten free is really not as difficult as you may think. It's hard to get started, but once you know what you are doing, it really isn't bad at all. Also, you may be likely to end up eating more fresh foods (fruits, veggies, meats, dairy) because they are naturally gluten free!

  5. I think the increase in autoimmune diseases is at least partially attributable to the increased tendency of parents to protect their children from any and all germs (excessive use of antibacterial cleaners, etc.) This means that the kids' immune systems don't develop properly. Kids need to be kids and play in the dirt (even if that means they'll probably eat it at some point).

  6. honest question: if many patients aren't experiencing any symptoms, why is it important that they get diagnosed?

  7. Thanks for talking about Celiac Disease! I'm glad it's becoming more visible in the mainstream. I was diagnosed with it through a biopsy since my blood test was inconclusive. I feel so much healthier now that I'm eating GF, but It's a chore to drive 30 minutes away to buy special, GF bread for myself at an organic market. It'll be nice when GF bread is sold alongside wheat breads at local grocery stores.

  8. A friend of mine has gone GF due to arthritis, another auto-immune disease, in her back. She finds that if she eats something containing gluten, her arthritis pain is worse the following day. My understanding is that the gluten/arthritis connection isn't scientifically proven but many arthritis sufferers have reported an improvement in their symptoms after going GF.

    I think the increase in the incidence of Celiac and gluten intolerance is partially attributable to increased awareness but Philippa makes an excellent point above about the wheat we eat in this country today being different from the wheat we used to consume. I'd be curious to know whether rates of Celiac and gluten intolerance are also on the rise in other countries with greater biodiversity in their wheat crops, in particular Italy. I haven't heard that people in that country are consuming less pasta. I do know that the wheat they use to produce pasta is a different variety from the one we use (my understanding is that both countries use hard winter wheat but the Italian variety is not the same one grown in the U.S.).

  9. @Miranda — Anonymous is right. It's much easier than you might think. It's a matter of rethinking the way you eat food, but after the initial 5 days or so of withdrawal, you start realizing that all the carbs are mainly fillers and it's the other stuff on your plate with all the colour, nutrition and flavour.

    I've been writing about it in my blog: http://grainride.blogspot.com/p/excuses.html

  10. I would not be surprised if it is more prevalent due to something we are eating. I really believe in the whole "You are what you eat" which is why we stick to REAL foods that are unprocessed and as close to natural (and local) as we can.

    My husband and daughter have gluten and dairy sensitivities, so it is something we take very seriously.

  11. @Monica– If people don't have symptoms, it's still important to get a diagnosis and go gluten free because the gluten is still causing damage to the body even when you can't feel it. There are many diseases and issues that can be attributed to untreated Celiac disease, including things like intestinal and other types of cancer.

  12. In the 1950's diagnosis was much harder to come by, testing today is sooo much easier and more accurate too. Also back then, although there were some diagnosis, many doctors didn't know how to treat it, and so there was no point to diagnose. My great grandfather eventually starved to death due to lack of nutrition absorption because of Celiac. Its listed as his cause of death.

    Its important to note that most celiacs today do not have "traditional" symptoms. But any symptom linked to malnutrition, like fatigue, headaches, infertility, poor tooth enamel, joint pain etc can be a symptom of celiac because of malabsorption problems.

  13. I've tested negative for Celiac, but I still feel bad (a gastro specialist said I have IBS). I have tried to give up wheat completely to see if it helps, but to be honest it's really hard to do! Sometimes I just want a piece of bread or pizza or even just mayo that may be gluten. Have you had any issues giving wheat up???

  14. This is such an important topic. They are also finding the CD can cause psychiatric issues such as depression, anxiety and hallucinations. Going gluten free can make a world of difference for some people. I have friends who have done it due to arthritis, others who have done it due to psychiatric issues, still others due to IBS symptoms.

    Thank you so much for providing the reading list. I'll be checking in to some of those books.

  15. @ anon 7.12:

    have you ever tried making your own mayonnaise?

    I'm not GF, but I can testify that since I've learned how to make homemade corn tortillas using maza flour, I tend to crave a fresh tortilla at night more often than I crave a piece of toast. They're crazy easy to make, and would probably really help some of you GFers (lol that sounds like such a bad name!) who are craving a slice of bread. (save yourself the money and skip the tortilla press. Make them by hand so they're nice and thick and cook them in a hot, dry cast iron skillet. Talk about satisfying!)

  16. first of all, i love this new-to-me blog. i don't have a kid in school yet, but this is something that i have been worrying about ever since i had my daughter almost 3 years ago.

    my daughter does not have gf issues, but she was "finally" diagnosed with having allergies to peanuts and eggs after a whole year and a half of suffering. her first pediatrician was a good doctor, but he was not up to checking into her constant rashes and general irritability. he chalked it up to baby eczema (due to weather or other general skin irritants) and colic. when he went out of town, i had to get her last appt. before we moved out of state, and that pediatrician was all for testing her for food allergies. lo and behold! after 2 horrible attempts at getting a blood sample, we got the results back that i had been worrying about all along.

    as soon as we took those 2 ingredients out of her diet (including trace amounts), her rashes cleared up. she seemed to be more comfortable and happy. i can't say that she never cries, because she is a toddler, but i must say that reading labels and being more conscious of what she eats (as well as my husband and i) has been such an improvement for our family. we are not 100% all the time, but i am proud of how well my child eats for a toddler. her favorites are edamame, brown rice, any and all fruits, broccoli, asparagus, black beans, hummus, salad with oil and vinegar (not ranch!), tomatoes etc. she can still be picky and probably eats more junk than i care for, but i think she may have a fair chance of growing up with better eating habits than some of her peers.

    also, to those who are afraid to take certain foods out of your diet–it's not as terrible as you may think. true, it might be hard at first, but the results are worth it. getting your family/friends to support you by eating and cooking alternatives helps a lot too. oh–check out "the future of food." you can stream it on netflix. it talks about the evolution of food science and what it may and probably has done to our raw food in america. i've been convinced for a little while now that my daughter's food allergies were a result of over-engineered food. that's just my opinion, though.

  17. Celiac disease is not the only medical problem that goes without a ton of knowledge on it. Epilepsy is another – and in some cases a ketogenic diet is recommended for children: http://en.wikipedia.org/wiki/Ketogenic_diet – which mimics starvation. One in twenty-six people does develop epilepsy in their life…over 20% of patients can literally do nothing about it since the seizures will not be controlled by modern medicine. http://health.usnews.com/health-news/family-health/brain-and-behavior/articles/2010/12/27/epilepsy-found-to-be-more-common-in-us-than-thought

  18. I tested negative for Celiac Disease through blood work and a bioposy. But by day 4 of a gluten free diet, I was back in perfect health! (After an almost two year detour of horrible health and chronic pain and exhaustion that followed my appendectomy). I'm officially a non-Celiac with gluten intolerance. NBC Chicago recently did a story on gluten intolerance and Celiac disease.

    I also started blogging once going gluten free. It isn't always easy, but the diet is wonderful for those of us who are gluten intolerant!

    Keep spreading the good word, Mrs. Q!

  19. Thanks for posting this and for all of the great links you have included!

    The picture you have included is very fitting as well.

  20. I think that it's important to note that to be diagnosed with Celiac, you must have the gene and have had a trigger. This trigger can be many things, including severe food poisoning, pregnancy, surgery, and a viral infection. Until that point, you will be asymptomatic and not test positive for Celiac.

    Both my twin sister and my mom have Celiac. I am currently asymptomatic, most likely because I have not had a trigger. Our neighbor is the gastrointerologist treating my sister and mom, and according to him, until you experience symptoms, there is no need to eat gluten-free or to get tested for Celiac. So for all of you who believe Celiac runs in your family, you do not have to immediately switch to gluten-free or get tested. Evaluate how you feel after eating and make a decision based on the presence (or non-presence) of symptoms.

  21. Laura, I met a woman who has Celiac disease for more than fifteen years (confirmed via blood test). She only recently decided to get gene tested and much to her surprise, she does not have the gene. She does have a strong family history. Interesting food for thought.

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