I’m starting to feel like the proposed gluten-free labeling laws are like blind dating.  She/he’s perfect, they tell you!  And then you meet and spend some time together and start to realize it’s all not quite as marvelous as you first thought.

The teleconference on August 2nd was great!  We heard that the comment period was re-opened and we might even have a law by 2012.  Several prominent researchers, including Dr. Alesso Fasano and Dr.Stefano Guandalini, spoke in favor of the new proposed legislation with a 20 ppm standard. “This is a standard that has been in use in Europe for almost two decades, & the science supports the U.S. adopting it as well,” commented Dr. Fasano.  I posted some of the highlights of the teleconference, but upon reading the 90+ page safety assessment, there are a lot more questions that come up.

The safety assessment suggests that for the most sensitive Celiac, ONE ppm would be the safest standard, as opposed to the proposed 20 ppm.

“The tolerable daily intake level for gluten in individual s with CD was determined in a safety assessment to be .4 mg gluten day for adverse morphological effects and .015 mg gluten a day for adverse clinical effects. The LOC (Level of concern) of gluten in food that corresponds with these TDI (total daily intake) values at the 90th percentile are less than 1 ppm for both morphological and clinical effects. In sum, these findings indicate that less than 1 ppm level of gluten in foods is the level of exposure for individuals with CD on a GFD that protects the most sensitive individuals with CD and thus protects the greatest number of individuals with CD from experiencing detrimental health effects from long term exposure.”

Or, in plain English, to protect all Celiacs, we’d be looking at 1 ppm or less.  This is a big difference than 20 ppm!

I think instinctively we all want the standard to be at zero, but first, we can’t get below what machines can detect (general consensus is around 3ppm).  It seems like the most important job of the FDA is to explain the gap between the proposed 20 ppm and the safety report’s recommendation of 1 ppm.  According to the Federal Register: “Currently, analytical methods that can reliably and consistently detect gluten at levels lower than 20 ppm do not appear to be available. In addition, it may be difficult or infeasible for food manufacturers to meet a lower gluten threshold level or that meeting a lower level could increase their food product costs. As a result, fewer and/or more expensive GF-labeled foods would be available to individuals with CD, placing them at higher risk of developing serious health complications from CD and other related diseases.”

Huh? There are still other programs out there which will certify foods at 5 and 10 ppm, such as CSA, GIG and NFCA, so it appears we have the technology.  Also, by all accounts the GF marketplace is booming.  Tricia Thompson, trailblazing RD of Gluten Free Watchdog states:

“Based on testing done by Gluten Free Watchdog (www.glutenfreewatchdog.org), the majority of food is testing below 5 ppm gluten* and most of the products testing this low do not carry any specialty certification.”

In other words, we’ve got the technology and the gluten-free market can handle it.

I hope FDA provides a clearer answer AND expresses how they determined 20ppm was safe level for almost all Celiacs, ideally yesterday!  People need this info to comment intelligently on the proposed ruling.  I’m a dietitian, but not trained in reading studies on levels of concern and how that translates into real life, and neither is the general public.  I hope they choose to make their decision-making transparent, AND I hope they lower the level.  If we can do it, I personally believe we should.

However, I also think the danger of not having a law is greater than the danger of the 20ppm, and at the point, best case scenario, we’ll have a law in effect in 2013.  I do want them to get on with it! We need something uniform, standard and most of all, enforceable.

The rest  of my wish list includes:

• Incorporate newer research, such as the studies that came out on gluten free grains and flours and cross contamination.
• Take this opportunity to define the “made in a factory” statements.
• Look closely at the issue of considering oats gluten-free, since there is still a good deal of controversy on the issue.
• I truly hope they do NOT go down the path of “low gluten”, which seems excessively confusing to people.
• I would love it if they would label gluten in medications, even though they were pretty clear it’s not on the table at this point

Resources around the web:

1 in 133 has a new FAQ section

Tricia Thompson, MS, RD has a fabulous article here

Gluten Free Living

Michael Taylor of the FDA also just posted on the proposed gluten-free regulations.

How does this change your view of the proposed gluten-free labeling laws?  The FDA says they want to hear from us. Let’s grant their wish.

The comment period starts Aug 3rd around noon, and you can submit your comment here:
www.regulations.gov and entering Docket No. FDA-2005-N-0404

For more information and a statement from the FDA, please see:

Agree?  Disagree? What’s on your wish list?  Whatever your view, I hope everyone who has a vested interest in this legislation takes the time to write into the FDA.

A very big thank you to the FDA for hosting this discussion and taking this next step, and to 1 in 133, American Celiac Disease Alliance, University of Maryland Center for Celiac Research and many, many others for getting this legislation moving again.

News, Events & Resources:

DC Celiacs

Next Meeting Date: Saturday, September 10, 2011, 2:00–4:00 pm
Speaker: TBD
Location: Rockville Library
www.montgomerycountymd.gov/apps/libraries/branchinfo/ro.asp

CSA Chapter 100 is hosting a conference with one my favorite authors, Melinda Dennis. Please RSVP for meeting with number of guests attending by emailing ddubravec@comcast.net or call 571-289-5675 with any questions.

Gluten Free Travel Site is one of my favorite on-the-go resources, and they’ve launched a monthly gluten-free newsletter.  This month, they feature a great resource list, and of course, many dining reviews, too.

Tis the season for fresh yummy fruit!  See what I had to say about Farmer’s Markets for Channel WUSA9

Harris Whole Health offers individual sessions, family sessions and group classes to help people eat healthier and feel better! Whether you are dealing with Celiac Disease, food allergies, picky eaters, children on the Autistic spectrum, chronic illness, or if you just want to feel and look better, Cheryl can help you achieve your goals. For an appointment with Cheryl Harris, Registered Dietitian and Nutritionist, please click here or call 571-271-8742.

It’s that time of year when everyone heads out of town! It’s a great time to discuss ways of making gluten-free travel easy.

For out of town travel, it helps to plan ahead. It’s a good idea to pack a few meals in a carry on bag, just in case your luggage gets lost or your flight gets delayed. Good options can include gluten-free energy bars (Larabars, Rx or Gomacro bars, etc.) , tuna with a pull top, dry cereal, dried fruit and nuts, baby carrots, rice cake “sandwiches”, apples, crackers, all-fruit leather, a hard boiled egg, “just add water” gluten-free meals, or even some kinds of beef and turkey jerky. Remember, things with liquid aren’t a good idea because of the new security laws. You can also check this resource on dining options at airports nationwide to get an idea if there’s food you can grab and go.

No matter where you’re headed, you can get basic gluten-free food nearby, even if you don’t have access to a kitchen. Almost every supermarket will carry some gluten-free staples. Here’s a list to get you thinking, and of course you may find even more extensive options:

If you’re going to be away for a while, you may want to order some gluten-free specialty foods and have them shipped to your destination. Gluten Free Mall and Navan foods are perfect for that.

And restaurants are getting into the act! There are many options from both national and local chains. Gluten Free Travel Site is a wonderful site with reviews of places across the country, and there’s a free mobile version, too–very cool! Gluten Free Registry is also a great on-the-go-resource with apps available.  Gluten Intolerance Group (GIG) has a national listing as well.  Triumph Dining has a good hard-copy national guide, and I really am a big fan of their dining cards.  There’s even Bob & Ruth’s Gluten Free dining and travel club, which has gluten-free travel getaways and newsletters. There are many websites with dining cards and I have a few of them listed here. You may also want to email the local Celiac association and find out where the locals go.

If you’re traveling abroad, that takes more planning. Here’s a link to an article with some good tips.

No matter where you’re headed, have a beautiful summer.

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Harris Whole Health offers individual sessions, family sessions and group classes to help people eat healthier and feel better! Whether you are dealing with Celiac Disease, food allergies, picky eaters, chronic illness, or if you just want to feel and look better, Cheryl can help you achieve your goals. For an appointment with Cheryl Harris, Registered Dietitian and Nutritionist, please click here or call 571-271-8742.

Summertime Fun

Celiac Disease Video Project

In the News

Events

Summertime Fun:

For many people, summertime is filled with picnics, outdoor adventures and travel. With a little planning, you can make sure to have fun and take care of your health, too.

Picnics and cookouts tend to work well for a gluten-free diet. Most grilled foods, like 100% burgers, hot dogs, chicken breasts, etc. are gluten-free in the regular grocery store, so you can coordinate with your host and ask about any marinades, or just bring your own food to grill. For vegetarians, Portabella mushrooms, red pepper sandwiches (my favorite) and veggie skewers work well. If they’re grilling buns, marinated meat, or anything else ‘glutenous’ in the same area, bring along aluminum foil to wrap your food and keep it safe from cross contamination. Just bring along your own bun, or in a pinch, use a lettuce leaf as a wrapper. It helps to carry a few little packets of condiments, in case there aren’t squeeze bottles of mayo or mustard. Green salads, fruit salads and watermelon are usually on the menu, and don’t forget grilled corn as a yummy treat!  Quinoa salads are wonderful in this weather, and are getting more popular. Ice cream, popsicles and frozen fruit bars are often gluten-free, though it’s important to check the label. Since these events are often potlucks, it’s easy to bring along a safe dish that you’ll enjoy.

No matter what you love to do, go out and have a fabulous summer!

Celiac Disease and a Gluten-Free Diet Videos are out!

I am very, very pleased to announce that the videos are out, and I think they’re wonderful teaching tools!
Celiac disease and a Gluten-free diet and feature:

• *Dr. John Snyder, Chief of the Dept Gastroenterology at CNMC in DC
• *Dr. Gary Kaplan, from Kaplan Center for Integrative Medicine
• *Cheryl Harris, MPH, RD Registered Dietitian and Nutritionist

Discussing testing, diagnosis and follow-up, eating a gluten-free diet and gluten-sensitivity.
http://www.harriswholehealth.com/celiac-disease-video-project

These are intended as a portable teaching tool and a way of sharing info with
friends and family so they can help you on your gluten-free journey.

Though there are an increasing number of videos out there on people’s stories
of diagnosis and ways to make a gluten-free pie, this is the first of its kind
to do a run-down of the medical and diet basics by healthcare professionals.
The Celiac Sprue Association has been kind enough to support the project.

Help me get the word out!
http://www.harriswholehealth.com/celiac-disease-video-project

New research:

A new Finnish study shows that people who don’t meet a full criteria for Celiac benefit from a gluten-free diet. The study was done with people who have positive antibodies for gluten, although they did not (yet) have villus damage, nor did they report symptoms prior to testing.  Hopefully someday we have a better classification for people who are in this grey area, and it’s certainly useful to have research demonstrate that waiting for villus damage many not be necessary or ideal.

In the News

• The Washingtonian Blog has a weekly food diary column, and this week featured a gluten-sensitive vegetarian.  Check it out!
• Interesting research on the usefulness and accuracy of direct to consumer genetic tests
• What’s really gluten-free? Gluten-Free Watchdog, which does independent screening for gluten in various projects is officially launched.
• Betty Crocker is hosting a baking contest during the month of June, and there’s a chance to win $5000 (and bragging rights, of course)
• Check out the W.H.O.L.E Gang’s May series on 30 days to Easy Gluten-Free Living.  There are a bunch of great posts (30, to be exact!) and I have one of my most popular handouts there, too.
• 1 in 133 The big cake was eaten, but the real success of 1 in 133 depends on what we do afterwards to make sure people are aware that gluten-free labeling laws were due out in August, 2008, and they’re still not out.  Thanks to a lot of great press for the event, hopefully there will soon be progress on this front, and FDA officials said they’re paying attention.  Only time (and continued attention) will tell!  While you’re at it, do stop by the 1 in 133 website and sign the petition and/or donate to the cause.

Events:

1st DC Vendor Expo and Cocktail Party is July 8th to benefit the Children’s National Medical Center Celiac Disease Program

Marion of Marion’s Smart Delights is hosting a gluten-free cookie decorating class at the Alexandria Whole Foods on June 27th.  Bring your little ones along for the fun!

Harris Whole Health offers individual sessions, family sessions and group classes to help people eat healthier and feel better! Whether you are dealing with Celiac Disease, food allergies, picky eaters, children on the Autistic spectrum, chronic illness, or if you just want to feel and look better, Cheryl can help you achieve your goals. For an appointment with Cheryl Harris, Registered Dietitian and Nutritionist, please click here or call 571-271-8742.

Great news! There are thousands of new places opening up across the country with delicious, healthy, fresh food. It’s even better than what you can get at the usual supermarket or even at health food stores. You don’t have to read labels most of the time. Does it sound too good to be true? Well, Farmer’s Markets are about to open up across the country. Most open in May or June.

Farmer’s Markets are a fabulous place to get gluten free and allergen free foods, too. Yes, many have a booth with baked goods or soups, but aside from that, it’s a paradise of gluten free goodness.

Benefits of shopping at the Farmer’s Market

• Fresh produce and meat-most fruits and vegetables are picked that day
• Support for local farmers
• Few or fewer pesticides on fruits and vegetables. A plum shipped from Chile need a lot of pesticides to keep it lovely even after traveling thousands of miles.
• Better taste! There’s nothing that compares to the taste of a freshly picked tomato, peach, or apple.
• The “manufacturer” is usually right in front of you, so if you have questions about how something is made or grown, just ask!

Up-to-date resources here:

Something Yummy in Season

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Harris Whole Health offers individual sessions, family sessions and group classes to help people eat healthier and feel better! Whether you are dealing with Celiac Disease, food allergies, picky eaters, children on the Autistic spectrum, chronic illness, or if you just want to feel and look better, Cheryl can help you achieve your goals. For an appointment with Cheryl Harris, Registered Dietitian and Nutritionist, please click here or call 571-271-8742.

Gluten-Free Vegetarian Diets

It can be challenging enough on gluten-free diet, but what if you eat a vegetarian or vegan diet?  It’s well established that there are health benefits to reducing the amount of meat in the diets of most Americans, and the lifestyle has appeal for some people based on ethical and/or environmental reasons.  Fortunately, with extra planning, a well-rounded and delicious gluten-free vegetarian diet is possible.

The good news is that many vegetarian staples, like beans, lentils, tofu, dairy, nuts, seeds and eggs are already naturally gluten-free.  And some of the best sources of vegetarian and vegan protein are gluten-free pseudo-grains, such as quinoa, buckwheat and amaranth. Also, grains, such as millet, teff and sorghum are very nutritious.  In addition to protein and fiber, they all have other vital nutrients, like B vitamins, iron, calcium, magnesium, etc.

It’s vital for everyone with Celiac disease to get enough iron, calcium, Vitamin D, fiber and B vitamins (including B12), because these are often lacking due to damage from the disease process and eating patterns often seen in gluten-free diets.  Pair that with a vegetarian diet, which can be lacking in protein, iron, calcium, B12, omega fats, and Vitamin D, and it’s easy to miss out on necessary nutrients.

So what’s a vegetarian to do?

• Focus on typical vegetarian staples that are gluten-free, like beans, tofu, nuts and seeds, and, of course fruits and veggies and.  If your diet includes dairy, eggs, fish, etc. these are very nutrient rich as well.
• Watch out for the miso!  Surprisingly, sometimes it contains barley.
• Eat a good source of protein with each meal.
• Try quinoa, buckwheat, amaranth etc.
• Get your vitamin D, iron and B vitamin levels checked.
• Consider a vegan or vegetarian omega 3 supplement from algae if you don’t eat fish.
• When possible, include fortified gluten-free foods, like cereals, breads, etc.
• Work with a Registered Dietitian to make sure you’re eating a balanced diet.

News

1 in 133

On May 4th, the world’s largest Gluten-free cake was made in Washington, DC for a good cause.  Gluten-free labeling laws were due out in August, 2008.  Thanks to a lot of great press for the event, hopefully there will soon be progress on this front, and FDA officials said they’re paying attention.  Only time (and continued attention) will tell!

While you’re at it, do stop by the 1 in 133 website and sign the petition and/or donate to the cause.

Gluten-Free Watch Dog

Gluten Free Watchdog will be fully operational Monday May 16. Preview the site www.glutenfreewatchdog.org. This site will test selected products without gluten ingredients listed and provide a detailed report of the gluten content of the selected products.

DC Area Events

Next Meeting Date: Saturday, May 14, 2011, 2:00–4:00 pm

Meeting Topic: TBD
Speaker: Anne Roland Lee, MSEd, RD, LD, Director of Nutritional Services, Schar USA

Vendors: One Dish Cuisine

Location: DC Public Library: Tenley-Friendship Branch
4450 Wisconsin Ave. NW, Washington, DC 20016
202-727-1488
www.dclibrary.org/tenley

CNMC Program

Join the Celiac Disease Program at Children’s National Medical Center on Tuesday May 17th for a FREE educational session called “Solving the Puzzle: The Many Faces of Celiac Disease.” The session will provide information about celiac disease as well as how it relates to orthopedics, allergy, neurology, endocrinology and psychology. The educational forum includes complimentary gluten-free breakfast and lunch.

Great people always know other great people…

We are moving locally, and although I will continue to see clients in Alexandria, I’m also looking for a spot to see clients near Fairfax/Burke.  Anyone thoughts of wonderful offices/people near by to connect with would be greatly appreciated!

Usually I write on one topic in particular, but there has been so much buzzing about the gluten-free/Celiac world that I wanted to share the highlights!

• 1 in 133 is a new project designed to highlight the lack of action on the part of the FDA in putting out a ruling on the definition of “gluten-free”, as promised by August 2008, and obviously long overdue.  If you’re local, consider coming out for the fun on May 4th (added incentive–world’s largest GF cake!).  Also, whether you’re near or far, sign the petition and/or consider donating to the cause.

• Dr. Fasano from the Center for Celiac Research and other researchers showed in the British Medical Journal that gluten intolerance is a true disease AND that it is biologically distinct from Celiac.   He estimated that 6% of the population is gluten intolerant. The Wall Street Journal did an excellent article on gluten intolerance as well.

• New research came out showing that Celiac is 5-10 times more common in people with Multiple Sclerosis (MS) and a whopping 32% of 1st degree relatives of people with MS had positive blood work for Celiac.  Cross testing is important!

• A little of my gluten-free journey was featured in a Washingtonian blog article on Celiac disease and a gluten-free diet.  I am hopeful that if there is a good response, they will focus on Celiac issues more often.
• LOTS of fantastic new gluten-free books have hit the shelves!  My favorites include
  • Simply Sugar and Gluten-Free by Amy Green
  • Simply…Gluten-free Desserts by Carol Kicinski
  • Good Morning Breakfasts without Gluten, Sugar, Eggs or Dairy (vegan)  e-book by Ricki Heller
  • Gluten-Free Cupcakes by Elana Amsterdam (out April 26th)
  • Shelley Case and Carol Fenster have a free, online bean (pulse) cookbook with a variety of gluten free bean and lentil recipes through Pulse Canada
• The Celiac Disease Video Project will be released in next month or 2 months.  It will be videos on medical diagnosis, follow up, all about a gluten-free diet and label reading, with a short segment on gluten sensitivity. I’m very excited to share this valuable resource, and am very appreciative of the Celiac Sprue Association for their support!
• If you love the latest news on Celiac, gluten intolerance, good nutrition and other health issues, I’ve joined the wild world of Twitter.  Follow me  @cherylharrisrd

To subscribe or unsubscribe, please see www.harriswholehealth.com

• “USDA Organic” label on fruits and vegetables:  Crops must meet the USDA standard, that is they must have been grown without most synthetic and petroleum-derived fertilizers or pesticides, antibiotics, irradiation, or genetic engineering.

• “USDA Organic” label on meat: The animals must be fed only with organically grown feed without animal byproducts, and should not be given hormones and antibiotics. Animals must have access to the outdoors — although when the label is applied to poultry (chickens, turkeys, etc.) the animals don’t necessarily need to actually spend time outdoors.

• “Organic” label on fish:  This means absolutely nothing.

• “Cage-Free” label on eggs: Implies hens not kept in cages, but the claim doesn’t mean the hens had enough room to move around freely or that they had access to the outdoors.  This claim is not regulated.

• “No Antibiotics Administered” or “Raised without Antibiotics” labels: These claims imply that the animals did not receive any antibiotics; however, this claim is NOT verified by any outside agency.

• “No Hormones Administered” label: It is illegal to administer hormones to poultry or hogs, so this claim means only that the producer has followed the law.  When applied to meat, the label implies that no hormones are used, but the claim is NOT verified by any independent agency.

Two great resources on labeling:

http://www.earthwatch2.org/sustainability/decoding%20labels.htm

Consumer Reports

http://www.greenerchoices.org/pcategories.cfm?pcat=food

So, where does all of this leave us?  Some great options for you and your family include:

• Purchase products with meaningful labels, such as USDA organic produce and grass-fed meats
• Buy more of your food from fatmer’s markets, local farms, and Community Supported Agriculture (CSA) programs.

Thanks to Fran Callahan of the Kaplan Center for helping compile links.

Passover: A Great Gluten-free Selection!

Passover isn’t here until April, but many of the products are already starting to appear in grocery stores.  Not all Passover foods are gluten-free, but many are, and there’s a much wider selection than usual at the grocery store.  This can be a good time to stock up on GF cakes and mixes, cookies, macaroons, “bread” crumbs and supplies like potato starch.  As an added bonus for people with multiple restrictions, most Kosher for Passover products contain no corn or soy products, either.

In a nutshell, the basic rule of foods for Passover is no leavened foods, which eliminates normal breads, cakes etc.  Matzo, (an unleavened bread usually made from wheat) is eaten, and some products contain products Matzo and matzo meal, (also potentially listed as cake meal or farfel).  However, many products don’t contain gluten.  Or, if you find products labeled “non-gebrok or gebroktz or grebrochts” (or another spelling variation) they’re non-grain containing and therefore have no gluten-containing ingredients. Often Kosher for Passover products and cakes are made of potato flour or nut meals rather than wheat or glutinous grains.

• As always in the gluten-free world, read labels carefully.  Kosher and Kosher for Passover are two different things entirely.  Kosher for Passover foods will be labeled “May be used for Passover” or have a symbol that says OUP.  I have often seen “regular” Kosher foods in the Passover section at grocery stores, so please do check the labels for gluten containing ingredients.

• Keep in mind that some of the foods are imported from other countries, and imports are often not labeled according to the 2004 FALCPA U.S. labeling laws.  So a label will still say matzo, but may not say wheat explicitly or have the disclaimer stating that it contains wheat.

• Most Kosher for Passover products will have to adhere to strict standards for cross contamination from a religious perspective, but again, buyer beware and no guarantees.  “Made in a factory” claims are still not regulated.

• From a gluten-free perspective, possibly the best part of Passover is AFTER Passover, when all of the great gluten-free goodies are on sale!  Passover ends April 26th, so mark your calendars, because the word has gotten out in gluten-free circles and the mad rush is on.

Here’s a link to the gluten-free products from Manishewitz:

Back when you really couldn’t get gluten-free prepared foods in the regular grocery store, this was a much bigger deal.  But it’s still nicer to have an expanded selection, and nicest of all is AFTER Passover, when all of the products are on sale!

For people who DO celebrate the actual holiday of Passover, not just the gluten-free food, here are some great recipes and information:

http://www.elanaspantry.com/passover-round-up/

http://www.recipezaar.com/cookbook.php?bookid=112835

http://iamglutenfree.blogspot.com/

http://glutenfreebay.blogspot.com/2007/03/gluten-free-passover-recipe-roundup.html

http://glutenfreebay.blogspot.com/2010/03/gluten-free-products-for-passover-2010_26.html

http://kosherfood.about.com/od/glutenfreepassover/GlutenFree_Passover.htm

http://recipecircus.com/recipes/Writermom77/ and click on holidays.  There are quite a few Jewish holiday recipes, and they are all gluten and dairy free

You can make matza, but it’s not technically Kosher for Passover–unless, of course, you happen to have a Rabbi on hand to bless it and all that jazz.  You can also buy gluten-free oat matzoh made from certified gluten-free oats.  The only downside is that it is insanely expensive! (new note–Yehuda matza is now in the stores, and they do have a GF line–only $6 a box.  Wow!)  Shmura Oat Matzah is distributed by a mom in MD Lakewood Shmura Matzo http://glutenfreematzoh.com/

Shabtai Gourmet products are made in a dedicated gluten-free facility, they’re and Kosher for Passover AND often they have free shipping deals.  And, most importantly, they’re insanely tasty.

Kids with Food Allergies put out a booklet last year on Passover with food restrictions. http://tinyurl.com/3ser4k

Events:

DC Celiacs (free):

Current Research on Gluten Sensitivity

Classes

Events

The Wild and Wacky World of Gluten Sensitivity

For a TV segment with me on Gluten Sensitivity on Let’s Talk Live DC, click here.

Unless you’re living in a bubble, you’ve heard about plenty people who do not have Celiac disease, and yet report all sorts of positive health improvements a gluten-free diet.  While for some it is obviously a just a fad, we’ll discuss what the research is on non-Celiac gluten sensitivity, and groups of people that seem to be most affected.  The main conditions linked to both Celiac disease and non-Celiac gluten sensitivity are IBS, neurological issues, autoimmune conditions, such as autoimmune thyroid disease or Type 1 diabetes, and schizophrenia.  I absolutely believe that all  people should get tested for Celiac disease before going gluten-free, simply because the diet is a lifelong commitment, and ideally, that’s a really long time.  And I’ve definitely found that people with a firm diagnosis are usually more compliant with the diet.

I can’t count the number of times people with gut issues report that a gluten-free diet helps their symptoms, despite testing negative for Celiac disease.  Research is starting to back them up.  It’s well-established that Celiac disease is 4-5 times more common in people with IBS than the general population.  And yet there are also a group of people without Celiac disease that respond favorably to a gluten-free diet.  It is most commonly seen in people with the HLA geneotype DQ2, which most people with CD have.   So is this a pre-Celiac condition? A similar condition? We’re really not sure. The American College of Gastroenterology published a 2009 article on the “No Man’s Land of Gluten Sensitivity”[i] and states that “even in the absence of fully developed celiac disease, gluten can induce symptoms similar to FBD (Functional Bowel Disorders).  Even more striking is the estimate that for every person with CD, there are at least six or seven people who are gluten sensitive.”[ii] Also, a study in Australia in January 2011 looked at people with IBS WITHOUT celiac disease and gave them either gluten or a placebo.  There were statistically significant changes in overall symptoms, abdominal pain, bloating, and fatigue in just 6 weeks[iii].  Although this is a small study, it was the first of its kind.

Neuropathy is a general term for conditions involving nerve cells.  It includes everything from ataxia, or lack of muscle coordination, peripheral neuropathy, or numbness and/or tingling in hands and feet, to headaches and more.  Neuropathy is very common in people with Celiac disease even when they are on a gluten-free diet, possibly as high as 22%[iv] .  However, compared to healthy people, a much higher percentage of people who have neuropathies WITHOUT Celiac test positive for AGA antibodies (an old screening test used for Celiac).  Our typical celiac tests look at tissue transglutaminase 2, while it seems like people with neuropathies most often have tissue transglutaminase 6. Almost all of these people have one of the HLA typings linked to Celiac (DQ2 or DQ8).  When gluten is removed, these markers disappear.  Only a few research studies have been done on removing gluten in the diet, but there are indications of improvements. And yet this is certainly an interesting area of research which we will hopefully learn much more about in future years!  Although this study is very dense, it gives a nice overview of the connection between gluten and neuropathy[v]

There has been an established link between schizophrenia and Celiac since the ‘60s, and it’s profound.  As one study puts it, “a drastic reduction, if not full remission, of schizophrenic symptoms after initiation of gluten withdrawal has been noted in a variety of studies. However, this occurs only in a subset of schizophrenic patients.”[vi] Although there is still debate, non-celiacs with schizophrenia have higher rates of AGA antibodies, and the rate of response to a gluten free diet seems higher than the rate of people with CD.  Considering how debilitating the disease is, that’s astounding!

Type 1 diabetes and autoimmune thyroid disease[vii]are both linked to Celiac disease, and yet animal models show a more generalized sensitivity to gluten.  Though the word gluten was not used, a study of Type 1 diabetics without CD showed less immune dysfunction on a wheat-free diet[viii].  While this is less concrete, it will be fascinating to see what research has to show over the next few years.

At this point, there are no widely accepted, definitive, research-based tests for gluten sensitivity, although I mentioned several suggestive tests.  This is why “diagnosis” for many people it is simply a matter of trial and error. I would not recommend Enterolab testing because they have published no research in the decade or more they have been in practice.  There is a new lab out called Cyrex (beginning in January 2011 which is promoted by Dr. Tom O’Brien, who has been a leading celiac researcher for years).[ix] As of yet, their test are not validated in scientific research, but this is a very promising test to watch.

As a final note, the strength of the link between gluten and these conditions is variable, and yet, so many people stand to potentially benefit.  This is also does not mean that everyone should go gluten-free.  And this is no longer a “fringe” view. Links to all of the referenced studies are below, and all are from peer reviewed major journals from the last few years (and these are just some of the studies out there).  It is quite a controversial topic, and we all have a lot to learn.  Personally, I am delighted that the medical community is now recognizing that gluten intolerance is true a medical condition, and look forward to seeing our knowledge continue to evolve.

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