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If you’re gluten-free, going to the grocery store used to mean spending hours reading labels to avoid anything with wheat, barley or other grains. But with the rising number of people with celiac disease and gluten intolerance, more stores and restaurants are offering gluten-free foods. We’ll discuss the rise of gluten-free diets.

Guests:
Nielsen Fernandez-Becker, associate director of the Celiac Management Clinic at the Stanford School of Medicine
Melinda Dennis, dietician and nutrition coordinator with the Celiac Center at Beth Israel Deaconess Medical Center, diagnosed with Celiac disease, and co-author of "Real Life with Celiac Disease: Troubleshooting and Thriving Gluten-Free"
Sadie Scheffer, owner and founder of BreadSRSLY.com, which delivers gluten-free breads around the city
Jefferson Adams, writer at Celiac.com

  • Stefanie

    I have celiac disease. Although labeling is getting better, there are so many hidden gluten ingredients I often can’t trust the “gluten-free” claims.

    I also found myself having strange experiences due to the economic crisis of the past few years:

    I had my set of safe packaged foods that I trusted, but then a few years ago I started getting mysterious reactions that I couldn’t explain. After a lot of digging, I finally discovered that some products that had been using rice, cider, or wine vinegar had quietly shifted to malt or white vinegar to cut costs–and they didn’t warn of the change on the labeling… they just switched the ingredients from “cider vinegar” to “vinegar”.

    • Hilary Reid-Collins

      Can you share the names of any of these products?

  • April McDonald

    I’ve heard from Americans traveling in Europe that they have stopped having reactions to wheat glutens during their stay. Is European wheat different? Different strain? Does the European wheat contain the same preservatives as the U.S. wheat?

    • james

      Maybe it has something to do with enjoying their lives.

    • KP

      I just returned from France & Spain. I have celiac disease, but was determined to eat at least a bite of a croissant. Sadly, it really messed with me. I was sick for a week. 🙁

  • I was diagnosed with celiac 3 years ago – as well as osteoporosis due to celiac. My bone scans are much better now, but I don’t hear about this connection much in the media. I’m so happy there are many GF options at farmers markets, like at Grand Lake.

  • Sharon – sista sandwich

    I just started a new business called Sista Sandwich which is grab and go gourmet gluten free sandwiches, we are being held in two cafes on Berkeley (CAL) Campus, Bolt and Haas and will be selling at Berkeley Bowl starting January. Getting grab and go gluten free is very difficult and our business came about because we felt there was a big need simply among our family and friends. We started two weeks ago in these two cafes and so far we are selling out of our sandwiches. Check us out sistasandwich.com or on facebook.

  • Dining out is still an adventure. Not all restaurants successfully avoid cross-contamination during preparation. Safest place to eat is where an owner/chef has a Celiac family member. They see the suffering 1st hand so are more careful.

    • Sharon – sista sandwich

      Absolutely, you are completely correct, when we started our gluten free grab and go sandwich business we realizded so many people think it is just about the bread. They don’t figure in cross contamination, condiments, fillings etc. In order to be gluten free you need to understand that it is more then just bread. Again having someone you know who gets sick from gluten helps you realize that gluten free living is difficult since many places don’t understand the entire picture. We hope our sandwiches will make it easier for gluten free individuals.

  • Sharon – sista sandwich

    My sister has had stomach issues since childhood, she has gone to numerous doctors who never were able to figure out what was making her feel so sick. Finally as an adult (three years ago) she took gluten out of her diet. She is like a new person, feels great and quality of life for her is so much better. However trying to get gluten free food on the go has been extremely difficult. With being so frustrated we decided to take matters into our own hands and start a business selling grab and go gourmet gluten free sandwiches, called Sista Sandwich. Getting grab and go gluten free is very difficult and our business came about because we felt there was a big need simply among our family and friends. We started two weeks ago in two cafes in the east bay and so far we are selling out of our sandwiches. Clearly there is a need for this and we hope that this trend to make the lives of gluten free individuals easier.

  • Madeline Pertsch

    The pizza restaurant I worked at had a certified gluten-free crust, and it was one of our most popular items. People often thanked us, they had thought they would never be able to have regular pizza again!

  • Marlon Maus

    Hi, I am a physician and 12 years ago developed worsening GI symptoms…I had to take more and more medications. A gastroenterologist friend suggested I try a gluten free diet. I did and was much better. I assumed it had nothing to do with my diet, so I started bread again and the problems started again! Since then I have had tests for celiac disease and allergy but probably have a sensitivity. It’s likely that too many people are unnecessarily on gluten-free diets, but I can’t blame them for trying!

  • Liz

    I was diagnosed with celiac disease 5 years ago. Two issues I face are that some brands, such as Trader Joe’s, label food gluten-free that has been processed on equipment shared with wheat. This food is therefore not safe for celiacs. Also, many restaurant servers are fed up with the gluten-free trend and often are impatient and/or don’t take seriously my concerns.

  • My dog has recently gone gluten free, because of the urging of our vet. Our dog has been diagnosed with lymphoma. Our vet says that there is research that suggests that lymphoma in dogs is being linked to dogs eating things that they shouldn’t, such as gluten and other grains that dogs aren’t intended to digest. The on-going allergic reactions to such things seem to increase the success and spreading of lymphoma. Since this change in his diet, his lymph node swelling has decreased significantly. Surprisingly, grain free and gluten free dog food is becoming very easy to find. Unfortunately, it does come at a higher cost.

    • igobydi

      My girlfriend has a similar situation. The vet said to her, “your healthy feed her what you eat”. So everyday “Poppy” gets some small cooked chunks of chicken, broccoli and cauliflower and loves it! Once a week prep time.

  • TylerH

    Can your guests address the aspect of gut flora (probiotic bacteria) and antibiotics in celiac, intolerances, and other autoimmune disorders?

  • Libby

    I have Hashimoto’s desease, an autoimmune desease of the thyroid. I was told by my health practitioner to go gluten-free, and that in fact individuals with any auto immune disease should go gluten-free. Do you agree? How is this related to leaky gut syndrome?

  • Prosecrafter

    I was not aware of my gluten intolerance until I started seeing a naturopathic doctor. Until then, my “traditional” MDs simply attributed my symptoms (digestive issues) to “irritable bowel syndrome,” which is a catch-all diagnosis for problems that are not recognized by typical medical testing. I have also learned that my gluten intolerance causes some of my migraine headaches. In addition to gluten intolerance, I am also unable to digest casein, the protein in dairy products.

  • Kim Alexander

    I went gluten-free three years ago after being first misdiagnosed and then misinformed by my health system doctor that I did not have a problem with gluten because I didn’t test positive for celiac disease. After removing gluten from my diet I am pain-free and a much better cook! I wish more doctors would recognize how what we eat impacts our health. And I believe that the gluten we eat today – processed white flour – is not anything remotely like what our grandparents consumed.

  • FayNissenbaum

    Very broad indicators for gluten intolerance – how can one self-diagnose? Is there a definitive test? I am guessing there is a spectrum from mild stomach upset all the way to full blown celiac disease. Please provide some clarity, folks!

    • Endoscopy with biopsies is the gold standard. I’m a Celiac with negative blood tests.

  • michael

    Im an educator in oakland, and one of the kids at my past school was on the “autism spectrum” Halfway through the year, he was switched to a gluten-free diet, and seemingly was able to focus much better and connect in a more productive way, both intellectually and socially. i’m wondering if your guests have encountered cases such as this?

  • esther

    Can you explain the difference between Gliadin and Gluten allergies? Can a person have antibodies for Gliadin an dnot Gluten?

    • Hilary Reid-Collins

      Gliadin is a protein that helps create gluten. http://en.wikipedia.org/wiki/Gliadin. It seems unlikely that you could have an allergy for one and not the other.

  • Emily

    Can a person diagnosed with Celiac disease ever be cured or reversed? Has the disease ever gone away?

    • igobydi

      Has far as I’ve know, no cure. 🙁 You should checkout “standard process” for cleansing (SP Complete) specifically and daily maintenance to not indulge in what we’re not supposed to…easier said than done.

    • Debbie Duncan

      The only cure for celiac disease is a strict gluten-free diet.

  • Debbie

    Could GMO wheat be a factor in this new gluten epidemic? I believe that to be an underlying factor I never see addressed.

    • I’ve wondered this as well! I recently just went to France, and was really worried about how I’d get on being both allergic to gluten and corn (get severe migraines, no celiacs). I found a gluten-free bakery and had a small cake, but then found out after that all the cakes in the bakery included organic corn from France! But guess what – I didn’t get a migraine. I became intrigued… and broke down and had a croissant. No migraine! We talked to our host there about it, and she was explaining to us how rigorous the French are on keeping ALL the wheat and corn in their country CLEAN and organic. It was amazing… and actually pretty depressing coming home and facing the very real reality that any trace amount of wheat or corn here will give me migraines…

      • Beth Grant DeRoos

        Loved your observations Melody. Would love to have a show that speaks to that issue.

  • KP

    I too, used to roll my eyes at “gluten free” until I was diagnosed with celiac disease this summer. I had a year of health issues – from my hair falling out (actual bald spots on my head) to such severe joint pain that I could not open a door or pick up a glass of water. I saw every specialist you can imagine until an allergist tested me for celiac disease and voila!

    Now, if I get “contaminated” I instantly break out with an angry red rash across my face. The rash is the canary in the coal mine.

    In addition, I own a restaurant and have been training both the front and back of house about how to deal with people like me. We now have gluten free bread, gluten free beer, and a well trained staff.

    That said, it is an uphill battle trying to stress the importance of how careful I need to be to the eye-rollers out there.

    • Eckstrom

      Where is your restaurant? I will patronize any business that offers GF beer!!! I get sick of margaritas and wine all the time.

      • KP

        TOAST in Oakland’s Rockridge neighborhood.
        http://www.toastoakland.com

        Our menu is 99% organic, seasonal, and probably 75% GF including an amazing GF chocolate cake.

        Hope to see you soon!

        • Erin

          Woohoo! I’m coming to your restaurant this weekend!!

  • Marcie Brown

    My Mom was diagnosed with Celiac at about age 75 — and it took a while for her doctors to figure it out. So it can happen at any age. It’s workable as I use rice flour in my Thanksgiving gravy & no one has ever complained. I also make a polenta pizza that we all like better than regular crust. Good bread seems to be the biggest challenge.

  • Jay Dee

    My son had a positive anti-gliadin antibody test, but tested negative
    for tissue transglutaminase antibodies. What does this mean? An
    internist said it is not a problem, a pediatrician said she does not
    know, and a rheumatologist said she doesn’t know. Is this test result a
    problem? What type of doctor should we consult?

  • Barry

    My uncle is a diagnosed celiac, I seem to exhibit symptoms of gluten intolerance as well and have eliminated gluten from my diet. GF for nearly 2 years, feel much better. My father also seemed to exhibit symptoms but was never diagnosed as such. He also had a form of lymphoma that I have heard had a connection to undiagnosed celiac disease. Has anyone on your panel ever heard of this connection. He passed away from an all together different ailment, but I wonder if the strain on his immune system might have played a part.

    • Debbie Duncan

      Celiacs – whether diagnosed or not – who do not follow the GF diet are at increased risk (perhaps as high as 50x!) for intestinal lymphoma.

  • I found out I was gluten-intolerant 10 years ago. I was 15 years old then, and have had severe migraines since I was 7 years old. Wheat/gluten, corn and processed sugars are all HUGE triggers for my migraines. I’m a big advocate for persons with severe migraines to try going gluten-free… every single person I’ve known who has migraines and tried going gluten-free have noticed their migraines lessening. Thankfully, over the years there are now more gluten-free products on the market, however I’ve found that many products contain corn, as it is not technically gluten. I myself don’t have Celiacs Disease, but I have family members who do, and they are also very sensitive to corn. I’ve talked with gluten-free bakery owners, and have asked them why they must use corn product, and their answer is always the same: “It’s cheap.” Honestly, in my own opinion… a large reason so many of us have become sensitive to gluten is because of how we’ve mass-produced wheat in this country (GMO, pesticides… etc.)… I feel the same way about corn. Gluten-free living is difficult, as you’ve talked about on this program – but it’s doable. There’s SO many more products on the market now (even gluten-free grocery markets in CA now… Stella Lucy is one in Southern Ca) – but for me at least, half or more of those products contain corn product – getting away from corn is even worse, as corn products are not always labeled as corn in ingredient lists (dextrose, malodextrin… etc). Anyway, living gluten-free is doable, and doesn’t mean you can’t eat a “normal” American diet. I have taco night at home with brown rice tortillas, have GF bagels and bread for sandwiches, rice cereals, rice pasta… I love baking and make GF pies and cookies and cakes and cupcakes and whatever else. It’s just a matter of finding some good cookbooks, finding that health food store near you that carries the flours or snacks that you can have, etc!

  • michael

    Im an educator in oakland, and one of the kids at my past school was on the “autism spectrum” Halfway through the year, he was switched to a gluten-free diet, and seemingly was able to focus much better and connect in a more productive way, both intellectually and socially. i’m wondering if your guests have encountered cases such as this?

    • Hilary Reid-Collins

      There is evidence that autism is (often) caused by inflammation. If this is true, then any method of reducing inflammation anywhere in the body is likely to improve symptoms. Whether or not this means that autistic people are also often gluten-intolerant, i’m not sure. It seems that all auto-immune diseases are loosely connected.

  • Shelley

    This panel is not representative of the gluten-free craze these days; they are discussing real (proven, biopsies) celiac disease. I don’t blame wait staff for rolling their eyes when going gluten free is touted as the cure for everything from depression and behavior problems in kids to arthritis. Many people just funnel their eating disorders or control issues into going gluten free. The expectation that everyone must accommodate every food issue, especially elective ones is annoying

  • Tristan Seifer

    regarding Mr. Iverson’s comment regarding the need for persistence: When I reported to my internist that I was experiencing neuropathy in my hands and feet, she first suggested I go on anti-depressants though when pressed she admitted that having known me for 10 years I didn’t present as depressed; then I was tested for rheumatoid arthritis and m.s., and even with blood work that showed low B1 levels (which two neurologists dismissed as “lab error” without retesting me) and continued neuropathy, eventually the neurologists and my internist just wanted to put me on anti-anxiety meds. It was a physical therapist who I was seeing for a back injury who noted my low vitamin levels and recommended I see a dietician — who within ten minutes, hearing my medical symptoms, suggested celiac disease (the first time I’d heard of this disease). I went on to be officially diagnosed via blood tests and endoscopy. Interestingly, my internist said after I’d been diagnosed, “Oh yes, neuropathy and low B1 levels are classic symptoms of celiac.” If only she’d noted that before I went on my nine month odyssey of MRIs and unnecessary bloodwork!

  • Dee

    I am 55 years old and have rheumatoid arthritis, diagnosed in 2011. My nutritionist put me on a gluten free diet because she says gluten is inflammatory. I don’t know whether the diet is doing anything to help or whether the medications I use for RA are keeping pain & swelling away. I had to go on an additional medication, even though I maintained the gluten free diet. So I am curious about other people with RA and their results with going gluten free.

  • John

    What a disappointing show. The guests are so weak. Such a missed opportunity! Where’s the conversation on convergence of diets around gluten free, Greek Island (Ikaria, Crete), paleo etc. and how so many people just feel much healthier and happier on the diet?

    • Martha

      I agree that the show was not helpful for many with questions about gluten free, perhaps because the guests were not given much time to share their knowledge and experience. I am not a doctor or nutritionist but was biopsy diagnosed with celiac disease over 40 years ago and feel that I know the subject well. The healthy aspects of the diet that you mention should indeed be understood. As my doctor advised in 1971, a celiac should focus on eating food that is naturally gluten free rather than going crazy trying to find substitutes for food containing gluten. This requires avoiding most processed food and dependence on breads and snacks. The diet is compatible with a variety of healthy choices, the difference being the risk of contamination that leads to disease. Chefs who prefer cooking with fresh ingredients are usually able to understand and serve gluten free food that can be enjoyed by those not on the diet.

    • Beth Grant DeRoos

      Yes, I would have loved to hear more about cultures whose cuisines are mostly gluten free.

  • Jennifer Iscol

    Please inform your listeners about a free nonprofit community resource: the Celiac Community Foundation of Northern California provides support, education and awareness, plus a free summer camp for kids with celiac disease. http://www.celiaccommunity.org

  • Erin

    I have celiac and homebrew my own beer. I would like to warn other gluten-intolerant folks about “reduced gluten” beer: it is a mis-nomer. If a beer is brewed with barley (aka “malt”), there is no process currently used that removes that gluten. Information to the contrary is based on testing methods that don’t accurately count barley gluten. I see these products around marked as “gluten free”.

  • Tina

    Was wondering if there’s any evidence of a link between gluten and other autoimmune disorders, for example, Grave’s Disease (hyperthyroidism)? Is it possible the gluten protein looking as a foreign body can be causing other things in the body to go haywire?

    • Don’t know if there is a link between the two, however, I have been told many times if you have one autoimmune disorder it is likely you will get a secondary autoimmune disease. I have both Graves (15 years ago diagnosed) and Celiac (diagnosed four years ago).

  • Eckstrom

    I’ve been gluten free now for four years after a 9 year diagnostic process that had me diagnosed with everything from rheumatoid arthritis to lupus and every autoimmune disease in between. Finally, it was my then six-year old sons pediatric Endocrinologist (my son has type1 diabetes) who suggested testing for celiac disease as type 1 kids have a much higher propensity to develope celiac than the general population. It’s the wacky immune system that predisposes one to develop an autoimmune disease so it wasn’t a stretch to test for celiac, and we certainly have a maternal history of wacky immune systems (vitilago, hashimoto’s, type 1 going way back). My rheumatologist felt that was going on a witch hunt but I persisted and guess what!

    As for embracing a gluten free diet just for the “health” of it, I can’t imagine why. A) you certainly don’t lose weight…Chips and guac are a great substitute for wheat thins, and just as fattening; B) there is NO passable gluten free beer option; and, C) why give up pizza and donuts unless you absolutely must?

    Editorializing aside, I do have a question…is lactose intolerance associated with celiac? Just recently I’ve found myself very affected by my morning latte. This came on suddenly and very profoundly.

  • I am disappointed at how little Melinda seems to know when asked questions. Seems those with personal experience in this area know more than she did. Can we all talk about why gluten is such an issue in recent years? Can we talk about the role of GMOs and how wheat is not what it used to be???

    • I disagree with you Robin, Melinda Dennis is exstremly knowledgable about gluten free diets. Perhaps you felt this due to the limitation of time to talk. She has personable experience and I think everyone did a great job!

  • glutenfree

    One can find lot of delicious gluten-free food in Indian cusine, most of the south indian food are made with fermentation and non-oily yet quiet delicious, full of protein and complex carbohydrates found in millets, lentils, pulses and vegetables.

  • Gina

    My daughter and I got blood tests from Immuno Laboratories that indicated sensitivities to IgG gluten, IgA gluten, wheat, Brewer’s Yeast, Baker’s Yeast and Rye, among other things. Many physician’s don’t believe food allergies can be tested by these blood tests. What do your guests say about the legitimacy of these tests? Also, levels of sensitivity are given such as +1, +2 and +3 out of 6. At what level sensitivity do you need to avoid the item completely?

  • May Koski

    Should people who have been diagnosed with osteoporosis or osteopenia but do not have obvious digestive issues consider the possibility of gluten intolerance as a major part of the problem?

    • Debbie Duncan

      It may be worth considering. The first screening for celiac disease is a blood test, which is usually called a celiac panel. It will screen for celiac antibodies. If those levels are high, you may need an intestinal biopsy (which isn’t as invasive as it sounds). Some celiacs have few or even no digestive symptoms.

  • igobydi

    Diana here. I was the one who emailed inquiring about a possible free or sliding scale clinic. My Mother was diagnosed with celiac several years ago and confirmed my life long battle with foods I can’t eat…well, sort of. I haven’t been “officially tested”. If anyone has insight I am all ears. The food alone I buy breaks my budget. I know I have a major allergy to gluten and dairy, but not sure the severity. The doctors I’ve seen throughout my 33 years of life so far have all told me I’m normal. Yay, right!! I feel amazing when cleansing, and it would be nice to get “officially” allergy tested. Insurance (of which i don’t have) doesn’t cover such exams. My body screams at me with pain regularly. Help!! Would love feedback of any/all kinds.

  • Beth Grant DeRoos

    Am puzzled. Looking at the Mayo Clinic website they note that the foods that someone needs to Always avoid all food and drinks containing:

    Barley (malt, malt flavoring and malt vinegar are usually made from barley) Ryy Triticale (a cross between wheat and rye) and Wheat.

    Then they note Many healthy and delicious foods are naturally gluten-free: Beans, seeds, nuts in their natural, unprocessed form
    Fresh eggs Fresh meats, fish and poultry (not breaded, batter-coated or marinated) Fruits and vegetables Most dairy products
    It’s important to make sure that they are not processed or mixed with gluten-containing grains, additives or preservatives. Many grains and starches can be part of a gluten-free diet:

    Amaranth Arrowroot Buckwheat and Flax Gluten free flours (rice, soy, potato, bean)Hominy (corn) Millet Quinoa Rice Sorghum Soy Tapioca Teff.

    As someone who is mostly vegetarian and at times vegan and get all the nutrients I need from the foods listed I am now even more puzzled listening to some of the guests.

  • margot

    I would like to see a follow up program exploring what might be the causes of this apparently recent upsurge in gluten intolerance. What has changed in the production of our food in the last 15 years or so? What role might GMOs play? Particular pesticides? New strains of wheat? Are there links to the increases in our society of other conditions like diabetes and obesity? GMOs may be the elephant in the room that never gets examined. The FDA has never required safety testing of them.

  • William

    My partner had constant leg pain. He started a gluten free diet following the suggestion of a doctor and it seems to be working. Do you know any similar cases? Congratulations for today’s gluten free show, very interesting!

  • Alice Miller

    About 3 years ago I started itching like crazy. Three MDs later I was told Eczema. It is another auto immune disease…..my husband has been gluten free for about 18 mos, so I decided to join him. I’m wondering if it will make a difference…..I’ve only been doing it for about 6 weeks.
    Alice

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