Portland, OR: Gluten-Free Paradise

I sat down at the bar at Ground Breaker Brewing in Southeast Portland for dinner. The server approached with a menu and I immediately launched into my I-have-celiac-disease routine. She listened and promptly responded, with a smile, that they do not use gluten anywhere in their facility and that I could have anything on the menu. I was giddy. This never happens.

Next she said, “you don’t have to be afraid here.”

She got it.

Eating out for someone with celiac disease is scary. When food is what makes you sick trusting a stranger to take your condition seriously and make sure you are safe is terrifying. Eating dinner out is like rolling dice; you just never know whether you are going to be sick tomorrow or not.

In most restaurant kitchens wheat abounds and special care must be taken with my food to be sure my meal is truly gluten-free and to prevent cross contamination. This means that not only do I have limited choices of food when I go to restaurants; I have a limited choice of restaurants. In the town that I live I eat at 5 places because those are the only places where I feel safe.

I travel frequently and on occasion I happen upon a 100% gluten-free restaurant or bakery like Posana in Asheville, NC or Coffee and a Specialty Bakery in Seattle, WA. These, of course, are the exception and not the rule – unless you are in Portland.

In Portland I felt like I had been set free, at least in the culinary sense. I ate at multiple restaurants that were 100% gluten-free and others that were experienced serving patrons with celiac disease. It is such a pleasant experience to eat without fear that what you are consuming might hurt you tomorrow.

In my short stay I made the following gluten-free stops in Portland (there are others and I’ll get to them next time):

Ground Breaker Brewing – Ground Breaker is a cozy spot with super friendly staff. I had gnocchi with a venison ragout, fish tacos, and their version of Appalachian stack cake (it wasn’t so much Appalachian, but that is another post entirely).

Brooklyn House – This restaurant is in a former home and has lovely little nooks and crannies perfect for a date or small celebration. It has a 100% gluten-free kitchen with a diverse menu. I had sweet potatoes and the white fish over Brussels sprouts, mushrooms, and carrots.

Deschutes Brewery – Deschutes is a super popular Pearl District brewery with award-winning beers. They do a gluten-free beer, but more importantly they have a dedicated fryer. So, I had fries, with garlic and cheese, for the first time in forever. Worth the trip.

Prasad – This is a 100% gluten-free and vegan spot located inside Yoga Pearl, a yoga studio located in the Pearl District. They serve full meals and juices. I ate here twice for breakfast. Day one I had a green juice and a rice bowl. Day two I enjoyed the chili farmhouse scramble with tempeh, greens, and brown rice with another green juice. Both were fantastic. The space is small and is open, so you will see the yogis come and go.

Petunia’s Pies and Pastries – Petunia’s is 100% gluten-free and vegan bakery and was a two-stop spot as well. They serve breakfast, sweets, and drinks and it is lovely. They offer biscuits and gravy and while I was tempted to try I declined, I would rather remember biscuits and gravy the way my Mommy makes them (with lots of gluten). But I did have coconut yogurt with fruit and blueberry coconut pound cake. On the return trip I had a maple, pumpkin, carrot, and zucchini cupcake with maple icing. Also, worth the trip.

Verde Cocina – Also in the Pearl District, this Latin restaurant has a gluten-free kitchen and features house-made chips and tortillas from certified gluten-free masa. I had dinner and lunch here. At dinner I had a chili relleno and for lunch chilaquiles. Both were wonderful, but know these aren’t the cheesy, greasy version of Latin dishes you might expect; both entrees were light on the cheese and heavy on the vegetables. Good and good for you.

Andina – This was the event dinner of the trip. Andina is located around the corner from Verde Cocina in the Pearl District, and while not 100% gluten-free it has a robust gluten-free menu and well-trained staff. There was spicy tuna with potatoes and crab salad, marinated asparagus, paella, and espresso panna cotta. All amazing. The server was very helpful; she eats gluten-free and took the time to recommend a number of other places to visit.

I am looking forward to my next trip to Portland and hope that what is happening in the food world there quickly spreads. If keeping Portland weird means keeping it this gluten-free, then I am in.

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Eating Gluten-Free on Carnival Cruise Lines

Traveling with celiac disease is a never ending challenge. Spending a week or more in a domestic or international location is difficult. You have to locate grocery stores, pack your food for the plane and beyond and research restaurants that have gluten-free menus or are rumored to cater to the needs of the gluten free. It is a lot of work.

Instead of requesting a gluten-free meal on the plane, I bring my own.

So, when my sister informed me that the 2014 family vacation would be an Alaskan cruise I immediately started spinning all the potential food-related nightmare scenarios. This was my first cruise.

We sailed on the Carnival Miracle for seven days out of Seattle with stops in Skagway, Juneau and Victoria. I shared the least dramatic of my worries with my sister and she assured me that she had made the necessary arrangements for me. I was to meet with Guest Services and then the maitre d’ to discuss my requirements. The Carnival representative assured my sister that they could safely feed me. My sweet sister then researched gluten free eating on Carnival cruises and she found a blog post by the lovely G-Free Laura. I felt better. I knew I would be worried until I was on the boat and talking to someone but this information helped.

I arrived in Seattle and enjoyed lovely gluten-free meals at Tom Douglas’s Lola, Anthony’s and Elliot’sOddfellow’s in Capitol Hill (I also recommend Elliot Bay Book Company while you are there), and Local 360, which is super awesome spot where everything on the menu is local. All these meals were lovely and gluten-free.

Then it was time to board the ship. The embarkation process took less time than I expected (considering there were over 2000 people aboard). We headed for Guest Services to request the partition between our rooms be opened and to talk about my dietary needs. Unfortunately, my record did not reflect that I needed a gluten-free accommodation, it only noted a special need. I took this as – they aren’t ready for me and I have to be perfectly honest, I was scared. Guest Services confidently advised me that all I needed to do was talk with the maitre d’ and it would be fine. I had packed enough food to eat one or two meals a day out of my bag, but I knew I needed at least one good meal a day from the kitchen. So, scared doesn’t really describe it, I had a minor meltdown.

We made our way to the dining room for our first meal. I met the maitre d’, Ken, at the door and explained what I needed. He promptly dispatched the lovely Jana to my table. I explained to her that I have celiac disease and would need a gluten-free meal. I went on to explain that I am medically required to have a gluten-free meal and that I am extremely sensitive. She was unflappable. She assured me immediately that they could accommodate my needs. In fact, because of my concern she offered to personally order and deliver my food herself since my server would be responsible for multiple tables of people. I happily agreed. She got me. To ensure that the kitchen would have time to specially (separately) prepare my meals I would need to order my meals a day in advance. So, every night at dinner I ordered my meals for the next day. It seems like it might be inconvenient, but I did not mind and it gave my family a preview of the next day’s offerings.

Our server, Damir, was helpful and a pleasure to be around. He understood my need and worked hard with Jana and the kitchen to make sure my meals came out at the same time as the rest of the table. This was a struggle on some nights, but they were aware and working on it. The kitchen is stocked with gluten-free bread and flour. So, many traditional items (sandwiches, French toast, pancakes, etc.) are available. I avoid all grains but rice when I am traveling, so I was slightly more limited and declined to eat the bread and flour-based items. Despite my more restrictive diet Jana was able to work with the kitchen each day to find something for me to eat that was interesting. I did eat a lot of steamed vegetables and plain meat – salmon, mahi mahi, flank steak, filet mignon and ribs. But I was also to have the seafood Newberg revised to meet my needs. Instead of the Newberg sauce they made a lemon butter sauce and put it over rice.

They were willing to go the extra step to help me enjoy my meal. As for dessert, the cream brulee and chocolate melting cake were my go-to items. Although, they did have other gluten-free choices. While dining room service was very good and accommodating, the room service and buffet offerings were off limits. I was specifically instructed not to order room service and as a rule I do not eat off buffets (too many changes for cross-contamination). So, on the ship my meals were restricted to what I brought onboard and eating in the main dining room. Know this ahead of time – eating is not a whenever-you-want-it-option unless you have a large stash of food in your cabin.

Chocolate Melting Cake

I was pleased with the attention and consideration that I was given by the dining room staff. They were genuinely concerned for me and they went out of there way to try to make my meals fun and interesting. It was not a perfect situation but the service was great and the food was better than expected. Tip your servers, maitre d’ and Jana. They deserve it.

Four Days in L.A.

The summer’s end arrived early and was anti-climatic. One minute it was July and I was recovering from my summer vacation in London and the next it was August and I was teaching again. So, after two months of a new semester and 7 lectures it was time for another trip. One thing I have learned after 2 years and 8 months or so in Fort Wayne is that I require frequent breaks from Northeast Indiana.

Where to then? The short list was Portland, Los Angeles, or home. I spent Labor Day at home so that left Portland and L.A. Portland in October did not sound all that attractive. If I want gray and rainy I can get that in Fort Wayne. So, L.A. won easily.

I set up temporary housekeeping in Santa Monica at The Viceroy, which was fantastic. Some will tell you that the place to stay in Santa Monica is Shutters on the Beach (just in front of The Viceroy). While Shutters is nice and you may run into a celebrity or two there (if you care for that kind of thing) it seems to be more of a family spot – lots of little ones. If you are traveling alone and can bear to walk a block to the beach then The Viceroy (or one of the other boutique hotels in Santa Monica) is probably better suited for you – fewer children and traditional vacationers. If you go please give my best to John and Andrew who work the front door.

It was a near perfect vacation. No work, no writing, no drama. I took long walks on the beach, bought a shirt at Amoeba Music, had a chauffeured tour (note: the chauffeur is a friend, but still) through Beverly Hills and Hollywood, got to the Griffith Observatory on a reasonably clear day, walked Zuma Beach, cruised up PCH, wandered through Malibu, dreamed of working at Pepperdine, socialized with some lovely friends, saw the Endeavor, and watched three near-perfect sunsets.

Even better, every meal was a great gluten-free experience. I dined on lamb belly at Michael Voltaggio’s ink., then had octopus salad and rock fish at Son of a Gun, drank a juice blend called Bright Eyes with my huevos rancheros at True Food Kitchen, had ceviche at Border Grill, and finished up the trip with curry at Rock Sugar. It was fabulous eating. Traveling gluten-free in L.A. is so easy.

The trip was right on time in every way. I can’t even complain about the L.A. traffic, I did not experience any of the bad parts of the city. I’m not sure that I am west coast kind of girl, but 4 days in Santa Monica is really hard to beat. It made returning to the not very sunny Midwest painful. But I still have the pictures . . .

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Celiac Awareness Month: Ten Things Everyone Should Know

May is Celiac Awareness Month.

As you may have read, I have celiac disease and I talk (and write) about it a lot. It is a huge part of my life – it controls everything I eat, where I eat it, the medication I can take, and even what sunscreen I can wear. In my many discussions about celiac disease with friends, family, servers, colleagues, grocery store clerks, doctors, nurses, and others, I find that people are usually very interested in knowing more about celiac disease.

So, in the spirit of increasing awareness, I offer my list of ten things everyone should know about celiac disease.

  1. Celiac disease is an autoimmune disease. When people with celiac disease eat gluten it causes an immune response and their immune system attacks and damages their intestines. This damage stops the body from absorbing nutrients properly. Celiac disease is not an allergy or an intolerance to gluten.
  2. Celiac disease is genetic. In order to develop the disease you must have the HLA-DQA1 and HLA-DQB1 genes.
  3. One in every 133 people has celiac disease. Many have the disease and do not know it.
  4. Celiac disease has more than 300 symptoms, affecting many different parts of the body, these can include chronic diarrhea, skin disorders, and infertility. These symptoms often subside after a gluten-free diet is instituted.
  5. Celiac disease diagnoses requires a blood test and biopsy. In order to properly diagnose a person with celiac disease the person should be eating gluten, have a blood test, and a biopsy of the upper intestine. If the blood test and the biopsy are positive the person has celiac disease.
  6. The only treatment for celiac disease is a gluten-free diet. Gluten is a protein found in wheat, rye, and barley.
  7. The intestinal damage caused by celiac disease can heal over time if gluten is eliminated from the person’s life. A person with celiac disease can never safely reintroduce gluten into his or her diet.
  8. Gluten is found in many products other than breads, crackers, and cereal. It can also be found in soy sauce, condiments, juices/smoothies, candy bars, processed foods, ice cream, beauty products, and alcoholic beverages, to name a few.
  9. Food is not gluten-free if it has come in contact with a surface, utensil, or other ingredient that contains gluten. That is called cross contamination and it can make a person with celiac disease sick.
  10. Not everyone on a gluten-free diet has celiac disease. There are many reasons why people may be on a gluten-free diet.

 

Celiac Awareness Month: Glutino Products Are Certified Gluten-Free

The gluten elimination process can often take a long time and be emotionally and physically challenging. You can read my story here. One of those challenges is finding food to eat. Many patients with celiac disease adopt a whole foods diet to great results. Fruit, vegetables, and most meats are naturally gluten-free (although you still have to inquire about packaging and other manufacturing processes to ensure safety). However, not everyone is willing or able to adopt a whole foods diet and sacrifice all processed foods. Many folks rely on processed foods for snacks, just can’t bear to give up breakfast cereal, or don’t have the time and resources to make every meal and snack fresh from scratch.

In the U.S. the term “gluten-free” is currently not associated with any threshold standards. This means that there is no definition for what gluten-free means on a food label in the U.S. This can make eating processed gluten-free foods extra challenging. One thing that makes it easier is seeking out foods that are certified gluten-free by the Gluten-Free Certification Organization. These foods are certified through testing to have less than 10 part per million of gluten in the final product. This provides some comfort to nervous celiac patients.

Certified_Gluten_Free_Logo

I was approached by Glutino to do a review of some of their products. I have tried Glutino products before, but I always noticed that the packaging lacked the certified gluten-free symbol, yet the website indicated that the products are tested to contain less than 10 ppm of gluten. I wondered why this was, so, I asked. This was the response I received from a Glutino representative:

Glutino products are certified by the Gluten-Free Certification Organization.   Though not currently stated on our packaging, we are in the process of adding this certification notification to our products. While the actual certification is a relatively new development for us, our stringent testing processes did not change. As a trusted pioneer and leader in convenient gluten free living, we’ve long supported the mission of the Gluten-Free Certification Organization to improve the health and lives of those living gluten-free and are proud to be adding the certification to our products for all consumers to see.

This information made me more comfortable eating their products. While I eat a very limited and carefully curated selection of processed gluten-free products I was comfortable trying these products and I recommend them to those looking for non-whole foods options for their diets. But remember, every person with celiac disease is different, what works for some may not work for others.

Here is what I found:

Glutino Table Crackers

I like these table crackers, a lot, but you should know up front that these are not going to give you the same cracker experience as a saltine or a Ritz. These crackers are flaky like a regular cracker, but they are much thinner and are larger in size allowing you to break them off into the size you prefer. They would be great with cheese or soup, but I like mine plain.

Glutino Mini Pretzels

A dear friend who has had celiac since he was a child give me some good advice early on, he said, don’t try to replace those things that you love with gluten-free options, because you will often be disappointed. He was mostly right. Except about these pretzels. If you are looking to replace regular pretzels with a gluten-free option then here it is. These mini pretzels (they also have pretzel sticks and pretzels covered in yogurt, fudge, or chocolate) are fantastic. They have the look, feel, and crunch of a regular pretzel. However, they lighter and in my opinion taste better than regular pretzels. I was worried that I was exaggerating so I asked friends, who are not gluten-free, to try these and they agreed: these are great and not great-for-gluten-free great, but legitimately great pretzels.

Glutino Bagel Chips with Cinnamon and Sugar

These little guys are nothing short of addictive. Again, they look, feel, and crunch of bagel chips, despite the wheat flour. I cannot tell any difference between these and regular bagel chips. But the addictive part is the sugar and cinnamon – this is dessert in a box. Try it, you will enjoy it.

Glutino has a whole host of other gluten-free products from breakfast pastries, to cookies and on to flavored crackers. The company has been around for 30 years and is openly committed to serving and advocating for those who live a gluten-free lifestyle. The company understands that gluten-free living is not a fad, rather it is a medical necessity for many. In response to my question regarding advocating for the celiac community, a director at Glutino responded by staying

Today, through our stringent testing process, Glutino’s products contain less than 10 parts per million of gluten — well below the guidelines expected to be announced by the FDA. Glutino has long been advocating for gluten-free labeling standards and is looking forward to the FDA’s decision to regulate gluten-free labeling. Standardized labeling will provide a safer environment in which consumers – especially those with celiac disease or gluten sensitivities – can make safe and informed decisions about their diet.

I am a tough sell and the company’s openness to questions, their thoughtful responses, and the tasty food has made me consider them as an option for my diet.

 

While I did not receive any monetary payment for this blog post it was solicited by Glutino and I was provided with free samples of Glutino products. However, I selected the products that I would review based on my individual diet and needs.

Celiac Disease and Drug Labeling

It has been nine months since I was diagnosed with celiac disease (CD). The only treatment for CD is strict avoidance of gluten. The transition to a gluten-free lifestyle has been a challenge. Leaving behind the food, and sometimes the beauty products, that you love is unpleasant at best. Another significant challenge is mastering the art of label reading.

Food labels can be difficult to understand, and cosmetics and cleaning supplies are more even more challenging – but the most challenging and complicated, by far, are drug labels. Ingestion of gluten from any of these sources can cause some patients with CD to have reactions and become symptomatic.

Last month I came down with my biannual upper respiratory infection. It happens the same way every time. Usually, all I need is a course of antibiotics (or at least I think I need them) and some Mucinex. The old days, before celiac, I would run to the doctor for a Z-Pak or Cipro and then to the pharmacy for some Mucinex. In a few days I would be healthy. Not anymore. Now, I have to figure out if the drugs I am prescribed and buy are safe for me to take – are they gluten-free.

Many over-the-counter (OTC) and prescription medications contain gluten. Gluten is used as an excipient in medications. Excipients are inactive ingredients that form the vehicle for delivery of the active ingredient. The most common gluten-containing excipient or inactive ingredient used is starch. Starch can be derived from corn, wheat, potato, or tapioca. Additional ingredients that may be derived from gluten include, but are not limited to, wheat, modified starch, pregelatinized starch, dextrates, dextrimaltose, caramel coloring, and dextrin. In patients with CD a medication using a wheat-derived excipient can trigger an autoimmune response and the symptoms that accompany it, such as diarrhea, abdominal pain, depression, joint pain, or skin rashes.

How do you tell if a medication is gluten-free?

The Food Allergen Labeling Consumer Protection Act of 2004, which requires that a product containing wheat must list the word “wheat” on the label, does not require that over-the-counter and prescription medications identify wheat or gluten containing ingredients in medications. 21 U.S.C. § 321(qq) (2012).

Under the Food, Drug and Cosmetic Act, OTC medications must list the inactive ingredients in the drug on the “Drug Facts” panel on the medication’s container. 21 C.F.R. §§ 201.66(c)(8) (2012).

Prescription drugs must include a description of the drug, including the inactive ingredients, in the drug’s package insert. Package inserts are part of the labeling for prescription drugs written for the benefit of practitioners.  21 C.F.R. §§ 201.56, 201.57, 201.100 (2012).

Since inactive ingredients must be included on labeling for both OTC and prescription drugs then patients should be able to determine from the label whether the drug contains gluten. Not true.

The inactive ingredients on both OTC and prescription drugs are often listed in a way that makes it impossible to tell if the product contains gluten. In the case of starch the label or package insert may only say “starch” or “pregelatinized starch.” If this is the case then the patient has to take additional precautions for taking the drug.

In the case of prescription drugs the patients’ sources of information is the package insert, the pharmacist, or a call to the manufacturer. Patients are given package inserts under limited circumstances, so a patient cannot count on receiving that information automatically. To access a package insert the patient can conduct a search for it at DailyMed using the drug name. The patient can also ask the pharmacist to provide the package insert or read it for him or her. If the ingredients listed show an excipient that can is or can be derived from a gluten source then the patient must call the manufacturer to confirm the source of the ingredient. Of course, this needs to be done before the pharmacist fills your prescription so you don’t pay for medication you can’t ultimately use. So, practically, this requires an additional visit to the pharmacy and a delay in filling the prescription.

It is important to know that manufacturers change excipients often and excipients vary between brand and generic drugs. Further, pharmacies do not stock the same generic medications from the same manufacturer. A pharmacy may change manufacturers regularly to get the best prices. Therefore, it is not enough to check on a drug’s status just once; you have to check and recheck to ensure you are safe.

As I prepared to tackle my upper respiratory infection I went to my usual OTC weapon, Mucinex. I read the label. The ingredient list for Mucinex includes the word “starch” with no qualifier (“starch(corn)”) Many will say that Mucinex is okay for people with CD because it is on the list of safe drugs on www.glutenfreedrugs.com. This is a handy website and I use as a place to start. However, despite the good intentions of the unnamed pharmacist author of the website, the site neither describes the methods used for compiling its gluten-free list nor the process for maintaining the list. For these reasons, I do my own research.

I went to the Mucinex website to investigate. There is no frequently asked questions list addressing gluten or offering a gluten-free statement. I then followed the site’s instructions and completed the online form for questions where I asked whether Mucinex contains gluten. Notice I did not limit my inquiry to just the starch – gluten can hide elsewhere and it’s good to be general because the response will be technical. Count on it.

A day or so later I received the following:

Dear Ms. Caudill,

Thank you for your email regarding Mucinex®.

In response to your inquiry, while Mucinex® products are not formulated with any ingredients that contain gluten, we have not certified that these products are gluten-free.  The starch ingredient is derived from potatoes.

We appreciate your interest in our product and we regret that we could not be more helpful.

Sincerely, Consumer Relations

This email was friendly, but it does not leave me feeling 100% confident that this medication is gluten-free. Did it even answer my question? The product is “not formulated with any ingredients that contain gluten” and “[t]he starch ingredient is derived from potatoes.” – okay, but does the drug contain gluten? They really won’t say for certain. Is the facility gluten-free? Should I worry about cross contamination? There is no way to know those things from this response.

In most cases, the response from Mucinex is representative of the type of answer you will get from a manufacturer, whether asking about an OTC or prescription drug. If a company does not specifically test for gluten it is highly unlikely that they will state without qualification that a product is gluten-free. They will often remind you that they cannot guarantee that the raw materials that they purchased to make the drug have not suffered cross-contamination. I don’t blame them – saying those things increases their liability.

Mucinex is not the problem. It is a good product. The problem is a lack of laws and regulations requiring prescription and OTC drug labeling to clearly disclose the presence of gluten contained in the drug’s inactive ingredients.

If regulations existed to require manufacturers to clearly list the inactive ingredients on product labels then patients would be better equipped to make choices in the drug store aisle without a day or more delay. Currently, making decisions in the drug store aisle is impossible. To be certain a drug does not contain gluten patients with CD, non-celiac gluten sensitivities (NCGS), or wheat allergies must make multiple phone calls, perform internet searches, and/or have the pharmacist review the package insert with them. At least most of us are able to do those things.

What about the patients with limited education or resources? We wrongly assume that all patients have internet access and are literate. Can everyone access DailyMed and read a package insert (which is written for practitioners), find manufacturer’s contact information, or be confident enough to ask a very busy pharmacist to stop what she is doing and help? Where a patient may not be able or empowered to do those things, most would be able to identify the words “gluten-free” on a drug label.

Assuming that the patient can access the manufacturer or pharmacist, even then, the patient can’t be 100% certain that the drug has not come in contact with gluten in the manufacturing process. There are no regulations that establish what it means for a drug to be gluten-free or to address gluten cross-contamination issues in drug manufacturing.

Part of this problem would be solved if drug labeling laws required that drug labels clearly identify the presence of gluten in a product. The second problem of what it means for a drug to be gluten-free would be solved if the FDA established a gluten threshold for drugs in the United States much like the regulations establishing gluten-free standards for food in the U.S., which are currently awaiting approval by the White House. Establishing such regulations not only benefits patients directly, but it ensures that physicians, pharmacists and other providers are better prepared to treat patients with CD, NCGS, and wheat allergies.

The Food and Drug Administration can make this happen. Let’s ask them to make drugs safe for those with CD, NCGS, and wheat allergies.

Gluten-Free Labeling in the United States

Grocery shopping has become challenging for me, because large sections of the grocery are off-limits. I have celiac disease (CD). CD is a systemic autoimmune disorder caused by exposure to gluten in genetically-susceptible people. Gluten is a protein found in wheat, rye, and barley. The immune response activated in celiac disease causes the body to attack gluten as if it is an antigen. Symptoms and other health problems associated with CD include including abdominal pain, bloating, diarrhea, psychiatric disorders, infertility, birth defects, osteoporosis, and life-threatening conditions such as intestinal cancer. According to the University of Chicago Celiac Disease Center, there are approximately 300 recognized symptoms of Celiac Disease. CD affects 1 in 133 people in the U.S. — the number of people in the U.S. with CD could fill 4,400 Boeing 747 jets.

The only treatment for CD is adherence to a gluten-free diet. This means that I must avoid anything that contains or has come in contact with gluten (wheat, barley, or rye). The list of gluten-containing substances I must avoid is not limited to food. People with CD must find cosmetics, beauty products, cleaning supplies, and medications that are gluten-free. Exposure to gluten from these sources can also result in a CD immune response and its accompanying symptoms.

I learned quickly after my diagnosis that the easiest way to eat is to buy fresh food. You know, the food found on the perimeter of the grocery store. I have little use for the guts of the grocery store where all the tasty bagged, boxed, and canned foods live.

When I pick up an organic bunch of kale, I know what is in it. That is not true of food that comes in boxes, bags, and cans. Decoding the ingredients of processed products is tricky. In foods not labeled “gluten-free,” I avoid anything that includes the ingredients “natural flavors,” “artificial flavoring,” or anything else that is vague. Then, I have to spend time Googling or using my gluten-free phone app to see if I can determine the gluten-free status of any other ingredients.

I am that lady standing in the aisle, probably in your way, basket on the floor, can in one hand, and an iphone in the other. Even if the product I am looking at has the words “gluten-free” on the label, I still have to wonder if it is gluten-free. I cannot just sigh with relief and toss it in my basket.

Why?

In the United States, there is no legal definition for the phrase “gluten-free.” That is right; manufacturers can use that phrase as they choose without meeting any established, regulated standards. “Gluten-free” means whatever they say it means as long as, according to the U.S. Food and Drug Administration (FDA), it is not “misleading.” There are instances of food products being sold with “gluten-free” labeling, and some products contain varying amounts of gluten, include “wheat” in the ingredients, and are exposed to gluten in the manufacturing process.

How can this be?

The FDA has failed to accurately define the term “major food allergen,” establish safe gluten thresholds for food products, and meet its legal obligation under the Food Allergen Labeling and Consumer Protection Act of 2004 (FALCP) to create and implement final rules for gluten-free food labeling.

The phrase “major food allergen” under FALCP means “(1) Milk, egg, fish (e.g., bass, flounder, or cod), Crustacean shellfish (e.g. crab, lobster, or shrimp), tree nuts (e.g. almonds, pecans, or walnuts), wheat, peanuts and soybeans. (2) A food ingredient that contains protein derived from a food specified in paragraph (1), except the following: (A) Any highly refined oil derived from a food specified in paragraph (1) and any ingredient derived form such highly refined oil. . . . .” 21 USC 321(qq) (2012). The FALCP requires that manufacturers identify these allergens by their common names (i.e. wheat, milk, or soy) on labeling for easy identification by consumers.

In order for a product to be gluten-free, it must be free of all gluten: wheat, barley, and rye. Unfortunately, the current law does not meet that standard. The definition of major food allergen includes only wheat. It does not include rye and barley, both of which contain gluten. The FDA’s definition of major food allergen must include the term “gluten” or the words “wheat, barley, and rye” to safely protect citizens with CD or other non-celiac gluten sensitivities.

Additionally, the FALCP charged the FDA to have final standards for gluten-free labeling in place by 2008, no later than four years after the enactment of FALCP. In 2007, following up on the mandate from FALCP, the FDA issued a proposed rule “Food Labeling: Gluten-Free Labeling of Foods.” The proposed rule states that a food is gluten-free if the food does not contain any of the following:

  1. an ingredient that is any type of wheat, rye, barley, or crossbreeds of these grains;
  2. an ingredient derived from these grains and that has not been processed to remove gluten;
  3. an ingredient derived from these grains and that has been processed to remove gluten, if it results in the food containing 20 or more parts per million (ppm) gluten; or
  4. 20 ppm or more gluten.

Food Labeling; Gluten-Free Labeling of Foods, 72 Fed. Reg. 2795 (proposed January 23, 2007) (to be codified at 21 CFR Part 101).

The FDA’s notice described the currently-adopted analytical methods for gluten detection as being able to reliably and consistently detect gluten at levels of 20 parts per million or more in a variety of foods. Participation by food manufacturers would be voluntary if they wish to market products as gluten-free. The comment period for these rules passed with no action. No final rules were issued by the FDA.

In 2011, the FDA reopened the comment period on the same proposed regulations for “Food Labeling; Gluten-Free Labeling of Foods.” That comment period closed and, again, no action was taken. No final rules were issued by the FDA regarding the labeling of gluten-free foods.

Over a year later, on Dec. 14, 2012, the FDA issued a notice titled “Request for Comments and Information on Initiating a Risk Assessment for Establishing Food Allergen Thresholds; Establishment of a Docket.” The comment period on the notice will close on Feb. 12, 2013, and an advisory committee meeting of the FDA is scheduled for March 7, 2013 from 8 a.m. to 5 p.m.

Have you ever shopped for a gluten-free cookbook for yourself or a friend? Do you know anyone with CD? It is likely that you do. Please consider supporting them by taking time to help prompt the FDA to do something with the power provided to it by Congress. Commenting on proposed government rules is a way for us to directly impact policy making. Your comments can directly impact and in some cases be included in the FDA’s final rules. Let your voice be heard.

It has been five years since the statutory deadline for final rules on gluten-free labeling, and the FDA has taken no final action. Five years. It is time for the FDA to do something.

This post is featured on The Huffington Post Blog.