Tag Archives: health

Science For Celiacs

22 Jun

For many people living with Celiac Disease, having Celiacs and being an advocate for awareness often times are synonymous. We are a demographic of people who cannot eat one of the most commonly consumed foods: bread. So, naturally, when people come across a Celiac for the first time they have a lot of questions.  Wheat has played an incredibly large role in our political, religious and culinary histories. As a result, it may seem pretty odd or even unbelievable when you encounter a person biologically designed to reject it.  Whenever I meet someone who has not heard of Celiac Disease or the gluten free diet I am unfailingly asked one of three questions:

  1. What is gluten???
  2. So…what happens to you if you eat bread?
  3. Celi-what disease?

It is important to be able to answer these questions coherently and knowledgeably. Why? Because otherwise the gluten free diet gets a bad rap! If people living with Celiacs or gluten intolerance do not speak up, the media and fad-dieting celebrities control the narrative about what it means to be “gluten free”.   That being said, if you have Celiac Disease or gluten intolerance, what should you know??

A Celiac in the know should have a basic and celiac-specific understanding of Physiology, Plant Biology, Biochemistry, Immunology and Genetics. As a Science teacher and GF blogger it is about time I merged my two favorite things into a blog post!  I won’t be offended if you simply skim the rest of this post because things are about to get a bit nerdy :)

Physiology
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Physiology is the study of biological functions eg how the digestive system functions. Given that Celiac Disease is a digestive disease it is important for us to know how the digestive system works! The  purpose of the digestive system is to digest and absorb.  There is a common misconception that people with Celiac Disease struggle with digestion but this isn’t really true: we struggle with absorption.

For example, someone who is lactose intolerant cannot digest dairy products, their body cannot break it down. Celiacs are great at breaking things down, in fact, we have a whole class of biological soldiers (antibodies) that attack gluten. If this were merely a matter of digestion, the symptoms of Celiac Disease would not be so varied and at times debilitating.

Digestion is the process of breaking down food into biologically usable parts. Your cells don’t need pepperoni pizza, they need glucose, amino acids, vitamins and minerals etc. The digestive process transforms food into these usable components.  Once the food is broken down (aka digested) it will reach your small intestine, which is where the absorption takes place.
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Your small intestine is lined with villi, finger-like projections that absorb those usable components from the food into the body/blood stream.  When the villi are damaged they look stub-like and can longer efficiently absorb nutrients.  Someone with Celiac Disease may eat an incredibly healthful diet and yet not receive the benefits of those foods because their villi are damaged!  Luckily, the villi can repair themselves overtime which is why living gluten free can often reverse almost all of the pre-diagnosis symptoms. For example, I went from being severely anemic to having normal iron levels about five months into being gluten free.

Plant Biology

How many times have you answered the “what is gluten” question with “You know…bread, pasta, cookies, anything with flour…basically.” Although that simplification may be best in some contexts, it is still nice to know what it really is! Gluten is a group of proteins that is responsible for the elasticity of dough aka the chewy goodness that I sometimes miss so much.  Gluten is made up of two proteins: gliadin and gluteninin (gluten = gliadin + glutenin). Interestingly, Celiacs are only sensitive to “gliadin” but for whatever reason we use the term “gluten-free” to describe a diet that is not harmful to people with Celiac Disease.   pro-43

Did you know that wheatgrass is gluten free? The wheatgrass is immature wheat. Though the same origin, Triticum aestivum L., the grass forms before the grain and does not contain the harmful proteins we discussed above. NOTE: if you buy wheatgrass make sure it is labelled  gluten free because otherwise there is a risk that the grass has been contaminated with the mature grain.

Biochemistry

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The very first day of my Biochemistry class in college my professor warned me that I would have to memorize the structure and names for all 20 amino acids used in the body to form proteins.  Don’t worry, these structures didn’t make my list of things Celiacs should know but the basic concept that proteins are made up of a string of amino acids definitely made the list.

We know if you are Celiac you need to be gluten free. We know that gluten is made up of two proteins and Celiacs are mostly sensitive to gliadin.  So what is it about the protein called gliadin that is harmful?

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A protein is made up of a string of amino acids. The sequence, or order, of these amino acids is what determines what type of protein it is.  There is a specific part of gliadin, a sequence of 19 amino acids, that trigger the autoimmune response in Celiac patients.  Proteins with similar sequences, even if not exact, can cause reactions as well. This is why people with Celiac Disease typically cannot eat rye, barley, malt and sometimes even oats because the amino acid sequences can cause a reaction!

Immunology

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The immune system has two parts: innate immunity, the body’s first and more generic line of defense, and adaptive immunity, our specific response. When it comes to Celiac Disease we are mostly interested in adaptive immunity because it is this part of the immune system that is triggered by gluten.

In someone with Celiac Disease, the body perceives gluten as a threat and produces antibodies to attack and eliminate it called Anti-gliadin antibodies (also called AGA). You probably recognize that word from the tests you were given for your diagnosis. Some doctors will test the blood for the presence of AGA in order to determine if someone has Celiac Disease.

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Why does it matter if the body creates an antibody specific for gluten? Doesn’t that just mean that the gluten is attacked? The immune system is very complex and yet imperfect.  Autoimmune diseases are conditions where the body’s defense systems begin to attack healthy cells. In Celiac Disease, the Anti-gliadin antibodies end up attacking the lining of the small intestine (among other areas in the body), damaging the ability of the villi to absorb nutrients.

In short, the immune system creates specific proteins that target foreign and unwanted invaders in the body. People with Celiac Disease develop antibodies in response to consuming gluten that attack and destroy healthy cells in the body causing damage, inflammation and symptoms of Celiacs.

Genetics

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The reason it is important to understand the genetic aspect of Celiac Disease is all about getting people tested.  If you or a family-member are diagnosed with Celiac Disease it is really important that the rest of the family get tested as well.  If a family-member has Celiac Disease, your chances of having it are much higher than the average person in the general population. Family-members may be asymptomatic or may have symptoms that have been misdiagnosed (I used to have a juvenile arthritis diagnosis on file before going gluten free).

I can’t tell you how many of my readers have told me that they found out they needed to be gluten free because a family-member was diagnosed first. My grandmother found out she had Celiac Disease after I was diagnosed and has experience improved health since going gluten free! There is no way to get around the fact that Celiacs is genetic. I know many families that are resistant to getting tested because they do not realize that they have a risk of having or developing Celiac Disease.

Being in the know is not just important for spreading accurate awareness, it can actually help you stay motivated. When you understand what happens to the body on a molecular level in response to even trace amounts of gluten you may find yourself even more committed to taking those extra steps like avoiding cross contamination to be completely gluten free.

Have a great rest of the weekend, readers!

-CC

How To Make the Most of Celiac Awareness Month!

30 Apr

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This year I am taking Celiac Awareness Month a little more personally than years past! In March, I went to the Digestive Disease National Coalition and met with Senators to discuss Resolution 550 that officially makes May  National Celiac Awareness Month.

When talking with the Senate staff I explained that making May Celiac Awareness Month gives members of the gluten free community a great jumping off point for awareness campaigns and projects. For example, the Gluten Intolerance Group implements their Chef-To-Plate program every May that gets restaurants to display information about the gluten free diet at their establishments. NFCA’s Fuel the Family program will share family stories from the gluten free blogosphere, daily gluten free product spotlights and will be promoting a Wear Green Day! The Celiac Disease Foundation has their annual Gluten Free EXPO on the 4th and 5th of May in Pasadena, California.

We don’t need to leave all the work to the nonprofits though! There are plenty of small projects and actions you can take to promote Celiac awareness during the month of May.

I want to practice what I preach by using May as a jumping off point for my awareness efforts. Any increase in awareness, no matter how small, can make a big difference in the lives of people living gluten free. How many times have you been at a restaurant when the waiter happened to know all about the gluten free diet and cross-contamination because he knew someone who knew someone? Although there is no instant gratification when it comes to promoting awareness, our collective work really does make a difference!

I know we are all busy; however, below is a list of ideas that won’t take up too much of your time but can still help you promote awareness.  Items on this list should be able to fit into the busiest of schedules. For example, I am a first year teacher at a turnaround school in the DC Region, I am taking the MCAT on May 11 and I am applying to medical school in June but I will be doing the items on the list with asterisks* next to them.

1. **Facebook Banner – if you are a member of  any type of group that hosts events I am sure you have been asked to change your profile picture or banner to promote events.  When I was an undergraduate, my professional sorority used to make it a “sister-requirement” to change our profile pictures during Rush.  This is a simple yet super effective way to promote awareness and it only takes a few seconds! You can design your own banner or picture to display or go to this website for some pre-made banners promoting awareness!

On that note, remember to Like CC Gluten Freed on Facebook!

For the entire month of May, I am changing my banner to:

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2. **Buy a few Gluten Free shirts and wear them every Monday for the month of May (or any day, I just liked the alliteration) Here are some of the shirts I bought for May 2013. If you want to go the extra mile, buy some GF swag for family members too! I know it seems excessive but I really did order all of these items…there aren’t many perks to being gluten free, at least we have cute clothes!

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I also have the Gluten Freek shirt from Mariposa Bakery in Oakland, California amongst many others.

3. **Pinterest Challenge - I am going to post one picture to Pinterest every day for the month of May that will promote awareness.  This is my goal for Celiac Awareness Month.  I will keep you all posted with my updates!

4. Twitter – Commit to tweeting about gluten free experiences during the month of may. You can post about restaurants you go to, foods you make, people you meet, anything just keep the posts coming!

5. Blog – Last May Gluten Dude updated his blog every single day for the month of May.  This is way too big a time commitment for me but if you can do it then more power to you! It is great for boosting your creativity. In order to get ideas to write about you might end up doing some research and learn something new yourself!

6. Donate – Worried about the time commitment? The quickest way, though not cheapest, way to celebrate Celiac Awareness Month is to donate to your favorite GF nonprofit. National Foundation For Celiac Awareness, Gluten Intolerance Group and Celiac Disease Foundation are some of my favorites. They do great work to promote awareness across the country!

7. Make a basket for a friend – Reconnect with members of the gluten free community by sending them a basket! Maybe you met someone at the last gluten free expo you attended or maybe you exchanged business cards with a random gluten free person you met last week or maybe you attended a gluten free support group meeting a year ago and  still have some contacts. Follow up with these connections and send a little GF goodie basket!

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8. Go to an event – Check out this website that lists gluten free events going on around the country. Find one near you. You can also check out websites that list Celiac and/or gluten free support groups. Attend a meeting!  You can also go to http://www.meetup.com and find a MeetUp group in your area that connects gluten free locals.

9. Bake GF cupcakes for your coworkers – What better way to explain about the gluten free diet than by giving people delicious treats? This is a great way to get your coworkers to be more supportive of your lifestyle. If you can, make the frosting Green. Here is a great recipe for Tiramisu cupcakes.  Here is a review of a great GF all-purpose flour so you can convert fun recipes you find online.

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10. **Get friends and family involved  – The best way to really understand what it is like to live with Celiac Disease is to actually try being gluten free for a day.  Have a friend or family member order gluten free while dining out for a week even if they aren’t celiac.  When I first started to show signs that I was struggling with being gluten free, my uncle decided to try being gluten free to see what the problem was.  It then became clear to him how challenging it truly is. Cross-contamination issues, awareness issues, dining out, social problems that arise because of being gluten free are all among the list of challenges that people with Celiac Disease or gluten intolerance face. These issues are pretty invisible to the average Joe, so get your family or friends informed by teaching them how to live gluten free, even if just for a week. The only way to truly get it is to live it.

Happy Celiac Awareness Month!

-CC

This Week On The Hill: Celiac Disease and Politics

4 Mar




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When I moved to Washington DC to teach 7th grade Science I never thought that I would end up in the offices of Senators and members of the House promoting legislation that will benefit the gluten free community. Advocating for the gluten free community is one of my greatest passions, it is why I started this blog, go to events and volunteer for many of the gluten free and/or Celiac nonprofits in the United States, but I never thought I would have the ear of the US government.

The Digestive Disease National Coalition held its annual public forum, uniting people from across the digestive disease spectrum for one cause: get our needs on Congress’s radar. DDNC held multiple informational lectures on Sunday preparing the volunteer advocates for our day on the Hill. Sunday night ended in an amazing Welcome Reception. I never expected to worry about over eating at a Digestive Disease event but the food was incredible and 100% gluten free despite the fact that Celiac Disease is only a small subset of the overall coalition. Katz provided the gluten free desserts as well as toast and muffins for breakfast the next day.

The Digestive Disease National Coalition unites people advocating for the treatment and prevention of conditions ranging from colorectal cancer to pancreatisis to gastro paresis to Celiac Disease to Chrons and much much more. The showing of volunteers was truly inspiring because we had policy makers, presidents of nonprofit organizations, patients and the families of patients all working together to promote legislation that will help cure, treat and prevent digestive diseases. I met cancer survivors who showed up to support people still fighting for their lives. I worked with people who were physically exhausted by the end of the day because they are living with serious chronic illnesses. The solidarity demonstrated by the digestive disease community is something to be revered.

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Although I am from California, I was representing the state of Maryland today, my current residence. I was happy to be with Team Maryland because Marilyn Geller, Chief Operating Officer of the Celiac Disease Foundation, was here representing the political needs of Californians living with Celiac Disease. Alice Bast, president of National Foundation for Celiac Awareness, was here representing Pennsylvania along with a small cohort of other members of NFCA. I was very proud to be a part of the Celiac cohort present at DDNC.

DDNC divided our coalition by state, forming teams of around six people. The teams were responsible for planning what would be pushed for during our meetings with Senators and Representatives and had to elect a team leader to facilitate the discussions. I was elected leader for Team Maryland which was both humbling, terrifying and exhilarating.

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I met with the offices of Senator Mikulsi, Senator Cardin, Representative Ruppersberger and Representative Van Hollen. The main goal of our visit was to push for an increase in National Institute of Health funding from $31 billion to $32 billion. Honestly, it was an easy sell given the fact that the people I met with were democrats, on various health committees and the NIH is located in Maryland so its funding directly impacts the state by increasing jobs in the health field.

You may be wondering what can Congress do for someone living with Celiac Disease. That is a fair question, unlike many diseases and conditions out there, Celiacs doesn’t have a very long or involved legislative agenda, something the gluten free community hopes to change in the next few years. However, there are a few issues that are pretty significant: 1. Gluten Free Labeling Laws 2. National Celiac Awareness Month (May)

Currently, the gluten free labeling bill is being reviewed in the Office of Management and Budget which is great. It should get sent back to the FDA soon for approval. The main issue I focused on in my Congressional visits was the declaration of May as Celiac Awareness Month.

In a time when budgets are tight and sequestration has broken the hearts of many members of Congress, pushing for meaningful legislation that doesn’t cost Congress a dime is pretty heart warming business. There is no reason for Congress not to proclaim May as National Celiac Awareness Month; however, there is a risk that this issue gets overlooked given the complicated political climate. My goal was to get this House and Senate Resolution on their radar.

I explained to the members of Congress that Celiac Awareness Month is incredibly important to our community. For one thing, the biggest challenge with living gluten free is the overall lack of awareness in the general population about the condition. Celiac Awareness Month helps get the word out because not only does the government get involved but it gives nonprofits like Celiac Disease Foundation, National Foundation for Celiac Awareness and the Gluten Intolerance Group a wonderful platform for awareness campaigns during the month of May. For example, last year GIG was able to reach over eight million people through their Chef to Plate program that has restaurants that currently offer gluten free menus promote Celiac and GF awareness for the month of May.

In addition to helping people currently diagnosed with Celiacs or gluten intolerance, declaring May as an official Celiac Awareness Month can help us increase the number of accurate diagnoses. This is where I got the attention of Congress: misdiagnosed Celiac patients are a drain on the economy. Before diagnosis, many Celiacs see close to ten physicians, racking up medical bills. Additionally, they are usually prescribed medications to treat symptoms that could be completely eradicated by following a gluten free diet. They undergo expensive procedures like endoscopies, blood tests, colonoscopies etc racking up more and more medical bills, potentially going into debt. Furthermore, undiagnosed people tend to be very sick, they may have to leave the workforce, start getting disability checks from the government or declare themselves as unemployed.

Personally, I feel like the quality of life arguments should be enough to tug at the heart strings of members of Congress but if not I am happy to make arguments that tug on the purse strings, and those arguments happen to quite plentiful.

I found overwhelming support for the Celiac Awareness Month Resolution. The staff aides asked me several follow up questions and even asked me for my contact information so they could get more information for their Senator on this issue.

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The Kennedy Caucus Room

I had such a wonderful time. Not only did I meet great people, true champions for their causes, but I got to spend time with NFCA and CDF as well as eat amazing food. I know the food is the least important part of the day but I have to admit it really was amazing to see gluten free accommodations made so efficiently and without error. The luncheon held in the Kennedy Caucus Room was a sandwich buffet that had gluten free and gluten-containing options but avoided cross contamination by separating and labeling the types of bread and providing condiments in packets instead of a common serving bowl and a knife to spread onto the bread.

The people I met today were so inspiring because many of them are patients who came out to represent the needs of people living with their conditions. These are people who took off work in order to promote a good cause, people who were willing to put themselves on the spot and speak to members of Congress about very personal matters. I have always said how much I love the gluten free community because it is such a supportive, connected and united group of people but what I didn’t know is that we have a host of brothers and sisters out there living with digestive diseases who are fighting the same battles for quality of life. I’m proud to be gluten free and proud to be a part of DDNC!

Consider signing up for the Digestive Disease National Coalition next year! It is an experience worth having!!

-CC

Gluten Free New Year’s Resolution 2013

30 Dec

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This is my second, and now annual, Celiac/gluten-free New Year’s Resolution post on CC Gluten Freed. The gluten free diet is so much more than a diet. In fact, I usually describe myself as “being gluten free” as opposed to following a gluten free diet. Semantics, yes, but an important point none-the-less. Being gluten free means adapting a whole new relationship to food, something that shapes our every day lives, holidays and traditions. Considering how complicated and challenging being gluten free can be, it seems appropriate to make our New Year’s Resolutions at least related to improving our health and gluten free lifestyle.

Last year I had a slue of NYRs all about improving my gluten free lifestyle. You can check out last year’s list here but in summary, I decided to:

1. Be (even more) gluten free – this means making smart, safe choices at restaurants like getting a salad instead of french fries due to risk of cross contamination.

2. Become informed — I vowed to start following GF blogs so that I can stay current on what other GF advocates are up to.

3. Get techy — there are many phone apps out there that make being gluten free much simpler. I decided to start using those applications including, my favorite, Find Me Gluten Free, an app that takes your GPS location and gives you a list of GFF (gluten free friendly) places nearby.

I wrote a follow-up last June about how I was doing with my NYRs and, I swear this to be true, I was pretty good about staying committed. In years past my new year convictions have always been more like token resolutions. “I will go to the gym every day!” or “I will eat salad at every single meal!” Though enthused, I never seemed to follow through with my generic resolutions. The problem? Conviction. I did not take the time to hash out the reasons why the resolutions were meaningful to me and, not surprisingly, they fell to the way side as the year started getting busy and hectic. I am proud to announce that for 2012 I successfully adopted all of my GF-NYRs and improved my gluten free life as a result.

My resolution this year is much simpler than my complex list of 2012 gluten free NYRs. This year has to do with defense and preparedness. The ability to absorb nutrients is often more limited in someone with Celiac Disease compared to the average Joe. Here’s why: the gluten free diet only works by completly eliminating gluten, not by merely limiting it. Many newly diagnosed believe that a low gluten diet will have close to the same benefits as being exclusively gluten free and that, my friends, is a misconception. When people think of a “diet’ they typically think of weight loss and we all know that if we limit our caloric intake we will lose weight. The more calories we restrict, the more weight that will be lost. Disclaimer: this is an over simplification of metabolism and weight loss but, in simplest terms, the relationship between caloric intake and weight loss is directly proportional whereas the relationship between nutrient absorption and gluten intake is more complicated and convoluted. Even trace amounts of gluten can trigger the production of counterproductive antibodies that will damage your small intestine. My point is that if you kind of diet, you will kind of lose weight whereas if you are kind of gluten free you will not be kind of symptom free, you will remain in the pain and state of malnutrition that originally provided hints for your diagnosis.

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Even compulsive Celiacs like myself (I say that in the most endearing way possible) cannot completely avoid gluten due to cross-contamination and accidents that will inevitably occur despite your best efforts. How can we prepare our bodies for such encounters? What can we do to compensate for the fact that we may not be absorbing nutrients as efficiently as a none Celiac?

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My NYR for 2013 is to take a daily vitamin, religiously, strictly and obligatorily. We have all heard doctors, moms and the like push us to take a daily vitamin but how many of you actually do it every day? I am super health conscious and still happily skip swallowing the disgusting smelling pellet of nutrients frequently. As a Celiac, I need all the nutrition I can get. If I don’t pay close attention to my diet, I cannot guarantee that I am getting all of the vitamins and minerals I need on a daily basis, deplting my body’s supplies and holding myself back from better health.

This year, starting January 1,2013 I will be taking my daily vitamin every morning, even if it is an unpleasant way to start the day. I have decided on taking Multi Vites Gummies. The benefit is that it is labeled as gluten free and the taste and texture of the vitamin but it does not have iron which means I will need to go the extra mile and buy an iron supplement as well. I advise not skipping out on the iron. Iron is essential to your body running properly, it is found in every cell of your body, helps with oxygenation and, if you don’t have enough iron in your body, you may experience fatigue.

Make sure the vitamin you pick is labeled gluten free!! I read through the ingredients on a gummy vitamin made by One-A-Day and concluded it was GF only to find that the allergen label said Contains Wheat! There are so many odd ingredients in vitamins that we may not recognize a potentially gluten containing ingredient so go for something with a GF label!

You may think I am being too picky, I mean come on, it is just a vitamin! Keep in mind that this is something that will start off my day for the next 365 days. The decision is not a small one! What I decide to take will impact my year and potentially my health. I want to make sure I make an informed decision.

If you are really interested in supplements and daily vitamins, another great choice for a Celiac is Fish Oil/omega 3s. The fish oil supplements work to combat inflammation in the body. Celiacs is an inflammatory condition: the antibodies we generate in response to consuming gluten cause a lot of inflammation in the body (thus the arthritis many experience prior to diagnose).

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I know it may not be enjoyable to have a regime of pills every morning but think of it this way: we have a disease where the treatment is not a pill cocktail but rather a diet. Even though being gluten free is challenging we are very lucky not to have to deal with side effects and financial expenses associated with prescription medications like the price of seeing the doctor to get your prescription followed by the actual price of the medication. As far as excuses go, we don’t have many with merit to not take a daily vitamin especially considering the nature of Celiac Disease in relation to absorption and nutrition.
Like last year, you can expect a follow up from me in June 2013! In the spirit of no-secrets-blogging, I will even post a copy of my blood work from 2012 compared to 2013 to see if the daily vitamin is making a difference!

Cheers to a new year and to preventative care and newly improved health!

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-CC

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FAQ: “So…what happens to you when you eat gluten?”

6 Dec

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One of the most frequently asked questions has got to be “What happens to you when you eat gluten?” This is a pretty reasonable question considering how serious and dire I sound when talking about being GF.  When I order, I double and sometimes triple check that the server understands my needs, I always bring a side dish to dinner parties just in case and many of my friends have seen the blood drain from my cheeks when I suspect I have just been cross-contaminated.  So what is all the fuss about? I mean, what happens to a Celiac who eats gluten?

For years I have given a textbook-perfect answer to this question. You know, the whole “the lining of my small intestines flattens and I can no longer absorb nutrients” speech. I do this partially because it makes it less personal but mostly because I have not had a significant amount of gluten sneak into my diet since becoming gluten free. I know what it was like before being gluten free.  I know how to describe what living with untreated Celiac Disease is like but I did not know what would happen to me if I, say…decided to eat a bowl of spaghetti out of the blue.

In short, I really didn’t know what would happen if I ate a significant amount of gluten, as opposed to the trace amounts I have been exposed to since my diagnosis.  

Unfortunately, I am now able to answer this question with more accuracy and detail than I’d like.  The memory of this Thanksgiving break is still very fresh in my mind. If you are wondering what happens to a highly compliant Celiac after eating a bowl of gluten, you are about to find out.

On Wednesday, November 21, I boarded a flight heading from Washington DC, my new home, to Los Angeles, California.  I had a plan: I wasn’t going to eat breakfast so that I could save room for my favorite food in Los Angeles: GF Spaghetti from Rosti in Encino.  The second I got off the plane I sent a text-message to my dad that read: “Landed! Can we go to Rosti????”

Once I got to the restaurant I ordered GF Spaghetti with Pink Sauce.  When the server brought me the bowl I noticed that the pasta looked different from the last time I was there, about three months ago. Rosti is pretty good about being gluten free. They know all about using fresh water to cook the pasta and designated-gluten free utensils to serve the dishes.  I was pretty confident in their GF protocol but, as an ever-vigiliant Celiac, I decided to double check anyways. I told the waiter that the pasta looked different to me and said “Are you sure this is the GF spaghetti?” He confirmed that it was and I dug in!

After the meal my stomach kind of hurt, nothing major.  As I got to the car, it started to really hurt. I pulled my mom aside and told her that my stomach was hurting and felt kind of crampy.  We decided that I probably upset my stomach by eating so and so much fast after not eating for almost 10 hours (what can I say? I’m Italian and I love my spaghetti!).

On Thanksgiving morning I sang at a tri-lingual Catholic mass with my family.  Halfway through the service I started to feel really woozy, then hot and then really nauseas.  My vision started to blur and black around the edges of my eyes.  I stumbled out of the church to get some air. I made sure I got some water since I thought I must be very dehydrated.

In the evening, while eating my turkey and mashed potatoes, I felt a weird pain in my chest. You know that sharp pain you get when you swallow wrong and it feels like you have gulped air?  I had a persistent pain at the top of my ribs between my chest and my back.  I thought I must have swallowed wrong and that the pain would go away.  When I got home, the exhaustion finally hit me and I collapsed into my bed.  I woke up at around 2:00am because of extreme nausea.  I got up and drank some water, once again, chalking my discomfort up to dehydration.  I woke up again at 4:00am nauseas again but this time frothing at the mouth (gross, I’m sorry but I got to keep it real).  I drank more water and went back to sleep.

The next day that weird pain in my chest had gotten even worse. I couldn’t eat, drink or breathe deeply without writhing in pain.  I had no idea what was wrong with me and had to make a tough decision: spend time with my family or spend the rest of my Thanksgiving holiday at the ER.  I decided to stay with my family. I figured that if something was really wrong with me I would have passed out by now.  At this point, I still do not know what is wrong with me. I definitely was not suspecting gluten.  I had never felt this way before!

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The only thing I wanted to do was get more spaghetti since I was leaving LA the next day. When we went back to Rosti the spaghetti that was put in front of me looked suspiciously different from the bowl I had eaten on Wednesday.  This is the moment when my mother and I started putting all the pieces together.  It wasn’t until the next day that I got my final clue and confirming evidence.

Three days after that first bowl of spaghetti at Rosti a blister, my final clue, appeared on my forearm.  It was the one symptom I could recognize as being from Celiac Disease.  The next thing I did was call Rosti to confirm my suspicions.  When I called I explained the situation which culminated in asking them “Do you have two brands of GF spaghetti?” The answer was no.  I had eaten an entire bowl of straight-up gluten.  I hate having to share this story about my favorite GF restaurant. They are the only place i have found that has GF spaghetti and I am definitely going back even though they really hurt me.

In the future, when people ask what happens to me when I eat gluten, I think I will stick with the short and sweet textbook answer.  The physical consequences I experienced after eating gluten were pretty terrifying and painful! The experience reminded me why I created this blog.  Living with Celiacs is so much more than just following a diet.  The stakes are really high.

When I don’t get contaminated for a while I sometimes lose focus, especially about the purpose of CC Gluten Freed. Sometimes I doubt myself and wonder why I thought it was necessary to start a blog that focuses on helping people comply with the gluten free diet. What’s a little gluten here and there?  It is at these moments that I slip up and wind up hurting myself. After truly finding out what happens to me when I eat gluten, I am even more committed to my charge: help the gluten free community stay happy and healthy by writing about how to deal with the inevitable social aspects of being gluten free.

The take away from my experience? 9 times out of 10 you will be the expert of gluten while dining at a restaurant. It does not matter if the chef went to the best Culinary school in the word or if your waiter’s cousin has Celiacs. You will be the expert and, consequently, you need to act that way. I had a gut feeling that something was wrong with the spaghetti.  I should have sent the waiter back to actually show the chef the pasta dish instead of just taking his word for it.

It has been a week since the glutening and I am still not fully well. I have been experiencing really extreme fatigue but my spirits are high and I know things will get better very soon! You can expect a How-To GF Holiday guide in the next week.  We have go to stick together during the Holidays, readers!  I will have some words of advice  on how to tweak traditions to make them gluten free and how to deal with Holiday dinner parties.

 

 

 

Happy December!

 

-CC

The Unsuspecting Celiac: Five Things That May Be Getting You

17 Sep

Being gluten free is a like being a full time student while having a full time job.  It requires understanding what is and where it can be found which means you must learn about the basics of cooking, how to read labels, and common restaurant preparation practices.  In terms of quantity of information, it is a lot. Not to mention, the labels on today’s foods are so complicated you feel like you need a BA in chemistry to decipher their code, but we Celiacs manage.  Once you get down the basics of being gluten free the real work starts. Every meal tests your knowledge and the consequence of ill-preparation or even a simple mistake is much graver than a bad grade.  The good news is that it does become easier with time. That being said, even the most seasoned Celiacs run into gluten now and then.

What are those common pitfalls that get even the most diligent gluten free devotees?  Here are 5 things that tend to sneak under the GF radar:

1. Pet Food – who would have though that man’s best friend could be your biggest gluten free enemy?  If you aren’t seeking out gluten free food for your pet I suggest you start right away.  Cats and dogs (at least mine and I’m sure there must be others) tend to wolf down their food. Seriously, when little Cannoli eats it is like something out of a cartoon with food flying in all directions.

In college my roommate had a Chihuahua who, like most small dogs and cats, would pick up a mouthful of food from their bowl and eat in all the way across the room on the floor.  If your pet food is full of gluten (like most are) you may be putting yourself at serious risk for cross-contamination in your house.

If you think labeling laws are lackluster in the human world, wait until you start looking for gluten free pet food. “Grain free” does NOT usually mean gluten free in the pet world. In fact, “grain free” varieties tend to have both oatmeal and barley in their recipes. You want to find brands that say “gluten free” or “no glutens” on them or you can take the time to read the labels on the “grain free” foods because some are gluten free.

Treats should also be gluten free because you typically handle them with your bare hands.  Blue has a bunch of gluten free treats that you can use to train puppies and to simply treat your pet.

Here are some very affordable brands that have gluten free food for both cats and dogs. I have used both Instinct and Blue for my pets with great results.

2. Wine – Many people believe that all wine is gluten free. While most wines are gluten free there are some exceptions that you should be aware of and on the lookout for.  For example, the process of fining the wine can result in gluten contamination if the company uses wheat protein as their fining agent. Fining is a process where the wine is stabilized and clarified by adding a protein (usually a clay called bentonite or animal protein). The proteins drift through the wine picking up solids and then sink to the bottom of the barrel leaving the wine at the top clear and stable.

Wines that don’t undergo fining usually need to be decanted before drinking. Furthermore, the proteins attract and eventually precipitate out phenols which contribute to the bitter taste of the wine. Fining can be used to augment the taste or astringency of the wine.

What is the verdict? Your wine is most likely safe, so drink up! According to Geraldine Newcomen of the Food Standards Agency in the UK, any product containing an allergen must be properly labelled eg if a wine fining process contaminates the wine with wheat it must be labeled on the bottle as “containing wheat.”  This is not true, or at least not enforced, in the US but most wines are naturally gluten free. Most wine companies use bentonite clay as their fining agent due the the vegan movement encouraging them to stay away from animal proteins and the food allergy movement pushing them away from using gluten.  When you drink wine, be conscientious. Check for any allergy labels on the bottle, avoid wines from Australia or New Zealand which have a higher likelihood of using wheat products during the wine making process.

3. French Fries – My go-to food at restaurants when I first got my CD diagnosis was French Fries. It wasn’t until a year into my diagnosis that I realized that French Fries are much more enemy than friend.  Though they are made of potato there are so many ways to contaminate French Fries. First and foremost, they are most likely fried in contaminated oil.  If the oil in the deep fryer is used to fry onion rings, fried chicken, wontons and the like than all foods fried in that oil are essentially infused with gluten and should be avoided.  Additionally, a lot of French Fries are dredged in flour to make them crisper when fried. What is worse, a lot of restaurants buy their French Fries frozen and so the waitstaff and potentially the kitchen staff wouldn’t even know that they have been dunked in flour. Along the lines of restaurants buying frozen French Fries, sometimes the staff does not pay attention to what type of fries they buy. For example, I went to a place in Berkeley, California that was selling beer-battered French Fries but didn’t even know it. I discovered this when I asked to see the packaging.

The moral of the story is stay away from French Fries unless you are at a restaurant that you know really, really well or has been trained in cross-contamination and gluten free awareness.

Are there some safe fries out there? Yes! Five Guys and In N Out both have GF fries and oil that is exclusively used for their fries. Stay away from almost all other fast food French Fries and be sure to inquire at sit-down restaurants before ordering their fries.

4. Veggie Burgers – I don’t fully understand why but many, many, many people assume that if something is vegetarian or vegan then it is probably gluten free too. This is absolutely not the case. Although vegans and gluten free people both have highly restricted diets, read labels and ask questions at restaurant it does not mean that our needs are the same. Sometimes, if it looks like a duck and quacks like a duck it simply isn’t a duck. You know?  I have been served veggie patties as the “gluten free option” a number of times, all of which resulted in me being glutened.  I learned my lesson and now avoid veggie burgers unless I can personally read the label or a chef comes out and tells me how he or she made the burger.

One time I was at a catered work event and the caterer said the veggie burger was the GF option. I asked the guy to double check the packaging and I watched as he picked up the box and read.  He came back to report that the patty was gluten free. Literally form 10 feet away and looking over his shoulder I could see a big sticker on the box that said “MADE FROM WHOLE WHEAT!”  Sometimes people can’t get vegans and gluten free people separated in their brains. This is something that gluten free people need to know and counter-act.

Some veggie burgers, like Sunshine burgers, are gluten free. If you are trying to be GF and vegetarian or vegan than be sure to find some reliable brands so you don’t go hungry!  I am actually going vegan until Thanksgiving and I look forward to the challenge.  I’ll be sure to post about my experience once it has been longer than a two-day commitment (I started yesterday).

5. Preschool or Kindergarten – This may not apply to most of my readers; however, many of you either have or at least know a Celiac kid.  Playdough is any Celiac kids worst enemy.  Children play with it all day and then run around touching things with their contaminated, yet adorable, little hands.  If you have a Celiac kid and need to send him or her to preschool or Kindergarten I suggest talking to the head teacher about playdough in the classroom.

Ironically, I discovered how troubling play-dough (brand: Play-Doh) can be through my work.  At a big work conference all of our tables had play-dough at them for people to fiddle with during the long 6 hour lectures.  Unfortunately, we also ate lunch at these tables.  People would rub the play-dough on the table to flatten it out, little bits would stick to the table and dry and my colleagues’ hands were coated with the shiny oil from the play dough, making me feel like I could see the gluten all over them.  As a grown up, I wasn’t too concerned. I made sure my hands and food didn’t touch the table. Kids aren’t this observant. They touch everything around them and are very prone to sticking their hands in their mouths.  The risk of contamination is pretty high!

Solutions? Talk to the teacher about having play-dough removed from the classroom. I am a teacher and I know I would be receptive to a suggestion like this from a parent. If for some reason they believe that play-dough is a quintessential component for their pre-K curriculum than advise they buy a GF brand. If they refuse you may want to consider either going to an administrator at the school or buying the GF play-dough yourself and coercively donate it to the school. If there is one thing I know about parents of Celiac kids, they are persistent and effective advocates for their children.

Alright, I recognize that on top of everything you know about being gluten free, adding even five more things can be pretty frustrating and disheartening.  Let’s end on a positive note. We talked about five surprising things you can’t have but what are some surprising things that you can have???

1. Macaroons and Macarons – Most Macaroons and Macarons are naturally gluten free! Macaroons are the American cookie with coconut in them used by many during Passover. Macarons are typically those colorful French cookies you see in pastry shops. They are also usually gluten free because they are traditionally made with almond flour.

There are always exceptions so always read labels and ask questions but for the most part, you are good to go. Jewish Macarons are used as a dessert on Passover. They are Kosher and gluten free. Additionally, a lot of French Macarons are made with almond flour like this recipe for chocolate Macarons.

Order some now!!

2. Lea and Perrins – We normally avoid Worcester Sauce because it used to always have gluten in it. This also meant we had to avoid Caesar salads and many steak sauces and marinades. Today, Lea and Perrins, probably the biggest Worcester company, has changed their recipe to be gluten free. I still would be cautious about ordering a Caesar salad or ordering something with Worcester without seeing the bottle and making sure it is Lea and Perrins but you can definitely use it at home when you are cooking. In the next few years I think it will be safe to eat Caesar dressing without too much inquiry. Now that Lea and Perrins have set the bar, I expect other companies to follow suit. Until that day, always be cautious but you can start re-including Lea and Perrins into your recipes.

3. Dorritos – These are now gluten free! The original flavor of Dorritos has changed its recipe, which used to include wheat flour, to a recipe that uses corn instead.  As someone in the field of Public Health I can’t really condone eating Dorritos but this will make Superbowl parties and the like much easier considering how popular the Nacho Cheese flavor is!  Yum!

4. Pao de Queijo aka Brazilian Cheese Bread – Ever been to Fogo De Chao? This is a very popular Brazilian restaurant that, like most Brazilian restaurants, serves Pao. This is the most amazing cheese bread on the planet! Seriously, it tastes like a Cheez-It but has the texture of fresh baked, perfectly gooey bread.  It is naturally gluten free.  If you don’t have a Brazilian restaurant in your area than you should order Brazi Bites online (or look for them at your local GF store).

5. Poppadoms aka Indian Lentil Bread – Though the texture resembles that of a chip more than bread, Poppadoms are delicious and available at most Indian restaurants. You should always check to make sure they do not have flour in them because some restaurants do not follow an authentic Poppadom recipe. They have a yummy nutty flavor and are a great GF substitute for Naan. Don’t get me wrong, they don’t taste like Naan, but it is something you can munch on at the table and use to scoop up curry in the bottom of your bowl during dinner.

I hope reading about the five foods that many unsuspecting Celiacs fall victim to will help you avoid gluten contamination this fall and that they five happy gluten free surprises made your day! Go indulge in some Macarons or some cheesy Dorritos. Being gluten free is very challenging. You deserve to indulge every now and then. Enjoy!

-CC

Back To School: the brown bag

26 Aug



Most of the school districts in the country have just finished with their first week of school.  As a first year teacher I am relearning what it means to need to bring your lunch to school everyday.  I know that teaching isn’t the only profession with an almost non-existant lunch break. So, what do we grownups do about lunch?  We need to revert back to a childhood strategy: the brown bag.

Being active in the field of public health has exposed me to many health conundrums that individuals must work to overcome despite the fact that the real answers to these problems can only be solved by city planning and public policy.  One such problem: food deserts. The food scenes in these deserts are dominated by fast food restaurants and mini-marts.  You can drive for miles without seeing a healthy food option.  These food deserts impact the health of lower-income, both urban and rural, communities across the country.  For a Celiac, the prevalence of food deserts are exponentially greater because options that are typically considered “healthy” are  often unavailable to us. A gluten-free-food-desert is an area with very limited GF options.  Maybe it is near where you live. Maybe it is where near you work. Either way these GF deserts make planning a necessity for any successful Celiac.

My current job happens to be in a food desert.  When my school had a faculty meeting we had to pass up six proximal pizza places because none of them had a salad option.  We ended up picking Lido’s pizza which was much further away than the other six pizza options near my school.

The lunch break for a teacher can more accurately be called a lunch moment.  We have about twenty minutes to take care of anything personal (eating, restroom, making phone calls, organizing, grabbing something we left in the car, etc.), then it is back into the trenches.

This is where the brown paper bag comes into play.  I don’t have time to run out to a local fast food place to grab lunch.  To boot, none of the places near me have viable GF options.  My school is surrounded by a buffalo wings place, Chick-fil-A, a couple of pizza places and a supermarket whose buffet is made up of chicken strips, mac n’ cheese and fresh baked bread.  The only viable solution to daily hunger-induced grumpiness (grumpy teachers aren’t good for the children) I could come up with is packing my lunch.

my lunch bag

So what should we put into these brown bags?  I like to pack a combination of nutritious and filling foods.  For example, blueberries are great for you but if you are hungry they really aren’t going to do the trick. That being said, opting for filling or calorie laden foods at the expense of nutrition will eventually wear your health down, breaking down your immune defenses and daily stamina.  If your job requires interacting with lots of people then you really need to make sure your immune defenses are at their best.

Here are some of the things I will have in my lunch this week.  Keep in mind that packing a lunch often requires either planning and prepping the night before or getting up a little bit earlier than you would like.
MONDAY

Using my favorite tupperware from Target, I pack the tupperware full of dark leafy greens, leftover meat (did you make chicken or steak this weekend? Save leftovers!) and grilled eggplant.  I do not like dressing.  It is messy, it makes the salad limp and the ingredients always make me nervous. Instead of dressing, I use other components like meat or grilled veggies to compliment the salad.  I think of it like a breadless sandwich.

Grilled Eggplant Recipe:

1. Slice eggplant vertically


2. Heat up a grill-pan or sauté pan

3. Cover both sides of the sliced eggplant with a light coating of olive oil

4. Season with salt and pepper. Feel free to spice up your seasoning by using onion powder, chili powder, paprika etc.

5. Let the eggplant cook on each side for about a minute and a half.  When the sides look dark (they will turn from off-white to an olive green) they are ready!

Once your salad is ready pack an apple, a bag of baby carrots and a yogurt.  Don’t forget utensils! If you don’t finish everything that is ok! You can nibble what is left on your commute home. Your goal should be bringing the perfect amount of food but if you have to miscalc on that you would way rather have too much than too little.
WEDNESDAY

Wednesday I am packing a good old fashioned sandwich. The best GF sandwich bread is Udi’s whole grain loaf (the one with the green label!). It stays together really well, it isn’t too dry/crumbly and it has a nostalgia-inducing classic sandwich bread taste. 

When you buy sandwich meat at the grocery store make sure it is GF! Giant market (this is an east coast thing) has GF meat at their deli (it is labeled and everything!).  I have been using honey-roasted turkey, sharp cheddar cheese, mayo, dijon mustard, cracked pepper and (of course) I sub out iceberg lettuce and opt for dark leafy greens. Don’t forget to pack up snacks likes carrots, berries, yogurt, rice chips or a banana.

FRIDAY

Let’s say it is the end of the week and your groceries are running low.  What do you do?  One of my favorite lunches is leftover chipotle burrito bowls.  Chipotle (or Qdoba) has all GF ingredients for their burrito bowls.  Chipotle is notorious for overstuffing their bowls. I can never finish them! So, to facilitate the leftover lunch making process, I divide the bowl in half before I start eating.  By dividing it in half early on, I guarantee that I will have enough leftovers to make my lunch the next day.

Don’t have any leftovers like this?  You can make a salad with dark leafy greens but instead of using leftover meat or eggplant, make your own dressing.  My personal favorite is an orange vinaigrette. You should make this the night before because there is no way you are going to be down to supreme oranges early in the morning!

Here is how it works:

1-2 oranges

1 tablespoon minced shallot (sweated with a splash of rice wine vinegar)

1 tablespoon rice wine vinegar

chopped herbs of your choice (dill, tarragon, basil etc)

salt and pper to taste

splash of olive oil

Instructions:

Remove the peels from the oranges using a sharp knife, cutting all the way through the pith. Section the oranges into supremes by cutting between each membrane. Click here for a “how to” on cutting out supremes. Squeeze each membrane of its juices into a bowl (save this for dressing!). Corasely chop the orange sections and place in the bowl with the juices. Then add the sweated shallots, vinegar and herbs to the bowl. Salt and pepper to taste. Stir in the splay of olive oil.

You can make this fancier and more complicated by adding diced cucumber to the dressing OR you can make this recipe simpler and quicker to assemble by taking out the shallots and/or herbs.

Unlike dressing you buy at the store, this dressing is made of 100% fresh ingredients, no preservatives AND it is nutritious. Fresh oranges and herbs are great for you!  Instead of adding empty calories to your salad you end up adding vitamin C, antioxidants and phytonutrients.

As for kids, a lot of my ideas are for a grown-up palate, although I do find that Celiac kids have pretty sophisticated taste for their ages!  When it comes to packing a kids lunch try and do things that will look like what all the other kids have.  Again, I recommend Udi’s bread because it really does look and feel like classic glutinous bread. Udi’s also has cookies that look and taste great.  I would try and stay away from GF products that…look like gluten free products. Being GF can be very isolating which is difficult for children to cope with. Making sure to buy products that are similar to what the other kids are having is a great tool for any Celiac of GF parent.  Kinnikinnick has delicious products for kids like their graham crackers.  These don’t look exactly like what the other kids will have but they really are delicious. They even have an animal cracker that will work well with school lunches!  In addition, for kids, you can always stick with the basics.  A PBJ with some baby carrots and string cheese.

Enjoy your lunches! If I get bored with these, as I am sure I will over the next few months, I will post my new creations!  This way we can keep our palates and our bodies happy and healthy throughout the year.

-CC

Expectations.

4 Aug

Expect: to consider reasonable, due or necessary

Up until very recently my GF expectations have been low.  I did not consider it reasonable that all people should know what gluten is. I did not feel that I was due a gluten free meal at catered or work events.  I did not think it was necessary that people put in extra effort to accommodate my dietary needs when I could always work my way around it on my own.  I expected people to be accepting of the fact that I might bring my own dinner to a catered event but I did not expect the event to accommodate me. Even though precedent dictates that people with alternative diets should be accommodated (look at how mainstream providing vegetarian options has become), for some reason, to my shame, I did not hold those same high expectations for myself or my gluten free community.

Now, my expectations have changed.

I realized that my expectations were being shaped by experience and patterns and not based on what is reasonable, due or necessary. It took  sustained positive experiences to break the pattern of my experiences with food to adjust my expectations.

I was recently accepted into Teach For America, a nonprofit organization that seeks to close the achievement gap in the United States.  In order to begin teaching in the Fall I needed to complete a six week training program.  The catch? Room and board were to be provided. Most people rejoice at the news that they get free room and board for six weeks but as someone with Celiac Disease, I expected nothing but trouble.  My experience with Teach For America (TFA) has changed my expectations for the better.  Check out what happened:

The room and board arrangements at Temple University for close to 1,000 corps members and staff members were made by my new organization Teach For America.  Although Temple University already had the infrastructure in place to accommodate people on the gluten free diet, it would not have been operational during the summer without the insistence of Teach For America. The fact that TFA went out of their way to communicate with the dining hall specifically about GF options is pretty astounding for several reasons:

1. TFA was accommodating close to 1,000 people’s needs.  They made accommodations for vegetarian diets, Kosher diets, vegan diets, rooming issues due to disabilities and many more issues.  There were so many needs and people to accommodate. I was so pleased that the Celiacs did not fall through the cracks.

2. TFA had to coordinate with twelve public schools in Philadelphia, finding summer teaching jobs for 800 corp members.  This took much time and effort due to sheer mass of teachers, schools and students. Add in the complicated and ever-twisting bureaucratic channels that TFA had to navigate and I think we can consider the GF accommodations close to a miracle.

Temple designated GF toaster with my Udi’s bagel warming up.

Temple’s GF zone — the GF food options are located in a designated “gluten-free/Kosher zone.” It remains unclear to me why you would combine the Kosher and GF options but…what can you do!

Temple’s GF microwave — Temple had many frozen GF products stored in a freezer in the GF zone.

I was very impressed with Temple’s gluten free infrastructure.  Don’t get me wrong, it wasn’t perfect. The food was bland and unhealthful but that wasn’t because it was GF. It was college cafeteria food!  In addition to the GF zone and availability of GF products the dining hall provided all TFA corps members with bagged lunch. The people with restricted diets (ranging from GF to Kosher to Peanut Free) would pick up their lunches in a separate, designated area.  Each food item (entrée, sides, snacks and drinks) was labeled with the person’s name and dietary restriction. Mine read: Cecilia Bonaduce — Gluten Free

In addition to the five weeks at Temple I spent one week in Washington DC at the Sheraton Four Points Hotel.  The accommodations there were even more impressive than at Temple.  The hotel served breakfast sandwiches every morning for the Teach For America people but at the end of the buffet line there were individually packaged and labeled GF breakfasts consisting of bacon, eggs and fruit.  When they served Italian food for lunch they had a labeled and separate area with GF pasta and sauce.  Though the salad had croutons mixed in it took nothing more than a simple request to one of the waiters to receive a fresh crouton-free salad.

This was my absolute favorite food moment:

The hotel provided bagged lunch and instead of a wilted, undressed salad or a couple of carrot sticks (my old expectations for an “accommodation.”) I opened my brown bag to find a brown rice wrap.  Real food!

After this experience I realized that even if you are going to a catered event with 1,000 people like I did this summer we should be accommodated.  I have officially raised my expectations.  I am hoping for a Pygmalion effect of sorts in which my high expectations will yield positive results in terms of promoting awareness and making accommodations for gluten free people as reasonable, due and necessary  as providing options for vegetarians has become in recent years.

It is time that you, just like me, adjust your expectations in order to protect your health and well-being. I used to hold low expectations because I did not think that GF accommodations were possible. I am telling you now that I am positive that it is possible. I witnessed such accommodations this summer and I hope to continue to experience such positive and inclusive events.  Furthermore, in the event that accommodations are not met, I will be holding myself to higher expectations as well. I expect myself to be an advocate, to speak up and to stand up for what I believe is reasonable, due and necessary.

-CC

GF New Year’s Resolution: Have you kept it up?

29 Jun

How many of you have followed through with your New Year’s Resolutions?

I have and, as promised, I am following up with my readers regarding my gluten free New Year’s Resolutions!  On December 30, 2011, I decided I would come up with 3 New Year’s Resolutions that would improve my gluten free life, making it easier and more enjoyable.

NYR #1

As most seasoned Celiacs know, there are various levels of “gluten freeness.” You have the people who are comfortable scraping the cheese/toppings off of a pizza or the icing off of a cake, the people who avoid gluten but don’t ask questions about cross contamination and, finally, the people who avoid gluten as if it is the plague and we are living in 1349.  Though I strive to be the latter, I do find that on occasion I just don’t feel like doing the gluten free dance when ordering, so I order something I am pretty sure is safe.  My NYR was to STOP DOING THAT!  I am happy to report that I have been super gluten free since January 1st.

Results?  I find that I am much less stressed at restaurants, though not always as pleased with my meal.  For example, instead of ordering the burger on the “specials menu” at Red Robin (now offering GF buns!), I chose the classic cheese burger that was listed on the “gluten free menu.” In my head, I know that the specials aren’t on the GF menu because they are new and are probably GF but I stuck with the simpler and safer choice.  Not only is dining out less stressful but I do believe that I have been “glutened” fewer times this year compared to previous years.

NYR #2

Though very active in the GF blogosphere as a writer, my second NYR aimed to increase my activity in the GF blogosphere as a reader.  I have started following a couple GF blogs and have discovered that not only are there many GF blogs out there but they are all very different. If you started following one or two blogs and simply felt it was not meant for you, I encourage you try one more time!  I realized that there were some blogs that I really liked in terms of content, frequency of updates, visual style and writing style and others that just weren’t a good fit for me.

You can check out my post Which Gluten Free Blogs Should I Follow? for a list of suggested blogs to check out.  The GF blogosphere is, with all due respect, cluttered.  There are tons and tons of blogs out there.  I suggest picking three to follow: CC Gluten Freed, for updates about the social aspects of being gluten free and how to manage tricky social situations, Simply Gluten Free, for close-to-daily recipe posts, and the National Foundation for Celiac Awareness (NFCA) newsletter for monthly email updates about Celiac Disease and the Gluten Free Diet.



Steps to being GF literate:

1. Follow CC Gluten Freed by submitting your email in the box on the right hand side of the screen

2. Follow or bookmark Simply Gluten Free for GF recipes

3. Sign up for the NFCA newsletter

 NYR #3

 My third and final NYR was to start using my iPhone (Androids work for this as well) to help with being gluten free.  This has been a huge success for me.  I used Find Me Gluten Free to choose where to eat.  Honestly, I can’t remember the last time I ate at a restaurant NOT listed on this phone app.  It is great for finding a quick place to eat when out with friends in an area that I am not familiar with.  The app takes your GPS location and then tells you where the closest GF friendly restaurants are, how to get there and what they offer.  I highly recommend downloading this app.  I actually bought my first smart phone for the sole purpose of downloading this app. It was the best, strategic phone decision I have ever made.

What was your New Year’s Resolution? Have you been true to it?  We are officially half way through the year!  If you haven’t been following your NYR, it isn’t too late — get started now.  Either create a new NYR’s for the mid-point of the year or choose to follow mine.  Either way, I find that the New Year gives us an opportunity to better ourselves and reaffirm our commitment to health.  I look at the mid-point of the year as a great opportunity to renew my commitment to my health and make being GF easier and more enjoyable.

-CC

Glutened.

24 Jun

It happens to the best of us: we get glutened.  In my four years as a diagnosed Celiac I have been glutened by cross-contamination via oil, cutting boards and pasta water, by oats (hiding in a chili recipe) and by barley (in a rice dish)  but never by straight up wheat or “wheat-gluten.”   Though I don’t know if it is because of smarts of obsessiveness,  I have been fairly successful at avoiding gluten ever since my diagnosis. Today was an exception.

I went to a dinner reception where the host was serving a BBQ buffet.  I was very careful about cross-contamination and very verbal about my needs.  I pulled a plate from the bottom of the stack (which was located next to a huge plate of cornbread) and used a fork to grab the “gluten free option” from its pan, despite the objections from the server.  Where did I go wrong?  Well, I didn’t.  The buffet staff told me explicitly that the GF option was the veggie burger, string beans and coleslaw, so that is what I put on my plate.

A few minutes after biting into my veggie burger (bunless), my throat started to feel, for lack of a better word, “ouchie.”  I don’t have a gluten allergy e.g. anaphylactic response to gluten, so I knew my throat wasn’t closing.  Nonetheless, it was hurting, there was a burning sensation.  I got up and double checked with the buffet staff that the burger was GF, they confirmed but I asked to see the ingredient list anyways.  The second ingredient on the list?  “Wheat Gluten.”

This experience was uniquely bad for two reasons:

1. Ingredients are listed in order of relative quantity e.g. if a recipe has just a hint of cinnamon in it, cinnamon will be one of the last ingredients listed.  This means I consumed a pretty substantial amount of gluten.  Additionally, this exposure was to “wheat gluten” one of the worst thing you can make a Celiac eat.  Wheat gluten is wheat that is stripped of the bran and the starch, leaving just the gluten protein.  Its consumption results in an incredibly pure and potent dosing.

2.  Normally, if someone glutens me, I chalk it up to the lack of awareness about Celiac Disease and its complex components e.g. weird ingredients and dangerous kitchen practices.  If I say “I am allergic to gluten” and someone thinks that “malt flavoring” isn’t glutinous,  I consider it an understandable  mistake for someone completely unfamiliar with the issue of gluten.  If I say “I am allergic to gluten” and the ingredient list literally has the word “GLUTEN” in it,  then it is a completely unreasonable mistake!

What I regret most about what has happened tonight is actually my reaction to the experience.  For the past few weeks I have been focused on and working on how I manage complicated Celiac situations. Tonight I realized that I have a long way to go.  When I realized I had eaten wheat, my eyes immediately filled with tears.  I did tell the waitstaff immediately so that they would stop serving the GF kids wheat burgers but after that, I fell to pieces.  Instead of staying at the party and seeing how I felt, I immediately called my brother and asked him to pick me up.  I left without saying goodbye to anyone.

In the future, I want to try and stick it out.  I felt so much anxiety after I left the dinner reception because I felt like I had been severely victimized.  Not only was I anticipating pain and illness but I was isolated from my peers, separated from normalcy, forced to confront the fact that I am different.

 

I am sitting here, frustrated, because I let Celiacs get me down.  I am sitting here, struggling, because I can’t focus very well on writing this post due to the fuzzy-brain-effect that gluten has on me.  Regardless of the fuzziness, I wanted to write this before I forgot how I am feeling tonight. When I am gltuened, I feel like the world stops.  It reminds me of how a politician must feel after just hearing she has lost the election.  You put in constant work, make sacrifices and, sometimes, go hungry, all for the sake of remaining gluten free.  Despite the work and effort, you don’t always win.  I imagine that a politician would want to be left alone after the news, to go into her room and just process.  This is how I felt tonight.  I let those feelings dictate my reaction and I left a celebratory party as a result. After I got home from the party, I realized that I felt pretty ok.  Certainly not great, but I felt well enough to be mildly social. If I had just remained calm and stayed at the party my experience would not have been so negative!

When you are glutened, take action.  Alert the restaurant, confide in your friends and family, stay calm and do not let yourself be a victim.  People face and overcome obstacles every single day.  I did not need to retreat today.  Next time, I won’t.

 

 

-CC

 

 

 

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