- By Cheyanne Hadlock
- Published 10/14/2013
My journey with celiac began a year ago...I have been sick all my life and doctors just couldn't figure out why I was having such severe abdominal pain and bloating. Until last September, I just couldn't take it anymore.
I went in for an ultrasound of my gallbladder and a hida-scan. My gallbladder was not failing to the point where they normally remove it. So, we ignored the pain. Until one night, after eating dinner, I ended up in the emergency room.
My doctor decided to send me in for a colonoscopy, EGD and biopsies to check for ulcers. I was cleared of ulcers, so we went ahead and removed my gallbladder.
A week later, my biopsy results had come in and suggested we get some lab work ran to check for celiac disease. My results came back over 100% positive.
I started the gluten-free diet after meeting with a dietician, and still have not started feeling better! In July my doctor wanted to do a Capsule Endoscopy to check for cancer and lymphomas. My insurance would not approve this without another blood test for celiac disease. When I got the results back, they were negative. My doctor explained that I have been following the diet extremely well, and we needed to rule the serious stuff out.
My insurance approved the capsule endoscopy and when the results came in, my doctor said everything looked good, but if he didn't already know that I had celiac disease there would be a couple things that he would be concerned about...I never found out what! After telling me that he would see me in a couple weeks, I decided to see another doctor. We tested my vitamin levels which were low, and I am iron deficient. I am now taking prenatal vitamins, ferrous sulfate (iron) and a probiotic to get levels back up. I also have osteoporosis at 20 years old.
We took more biopsies of my small intestine 3 weeks ago, and the doctor said that he saw no trace of celiac disease! It was normal...
So why am I still in pain and why can't they find anything?
- By Carissa Bell
- Published 09/26/2013
This is my very first blog on celiac.com and I wanted my first blog to be something that troubles me almost everyday. It began about a year ago...I suffered for half of that year not knowing why I was having severe skin irritation and the second half of the year trying to avoid the culprit.
I'm talking about wheat and I'm talking about how it effects me airborne. I was diagnosed with celiac disease back in early 2009, but these symptoms I started having were new and nothing I'd expierenced before. It started when I was out to eat with family and someone at the dinner table ordered bread. Moments after they received it my skin would start burning and itching, the next thing I know I would break out into hives. I would remain miserable and itching until I got away from the wheat then after 15 minutes usually I would be fine.
Now I really noticed this happening when I walked into a bakery. I went to this bakery near by because I was told they offered gluten-free options. I was only in there 5 seconds for the chef to inform me they do not offer gluten-free and I instantly started breaking out into hives and my skin was on fire. Five seconds is all it took for me to have a reaction.
Let's push forward a year later to now and when I am in the grocery store and near the bakery, smelling the wheat physically makes me sick to my stomach. I literally feel like I want to run to the bathroom and throw up. I've talked to many people with celiac and what I have gathered is that my reaction to wheat, on top of the normal reactions that most people get, is rare. I have met one other person who reacts the way I do but that's it. I talked to my primary care doctor and my GI doctor about this and both of them said they would have to research it and get back to me--it's been six months and I am still waiting on them to find anything on airborne reactions.
Since realizing I have an airborne reaction to wheat my life is what most people would consider to be sheltered. I live in a gluten-free bubble and I am much happier that way. Being as allergic to gluten as I am means that I can almost never go out to eat, and if I do I have to eat away from other diners or outside. If I am at the grocery store I cannot go down the isle that contains wheat and nowhere near the bakery. Someone please explain to me why in most grocery stores you have to pass through the bakery to get to the produce, the naturally gluten free foods. It is utterly unfair to people like me!
Gluten can affect people with celiac in many different ways. I've read that gluten can affect people in 50 different ways. That to me is quite a lot. I hope reading this is eye opening for both people with celiac disease and people without. Cheers!
I had been throwing up for about 6 months on and off, and it seemed like no matter what I ate I would still get sick. I was transitioning from San Diego back out to Dallas where I was from, and was trying to get settled in. I had days where I felt perfectly fine, and on those days I worked out with my trainer at the gym for about 2 hours a day. I thought I was doing everything right at that point.
I remember waking up one morning and getting ready for an appointment at the women's clinic. That morning was peculiar, because my hands were very numb. I had been experiencing numbness and tingling in my hands and feet for a couple months now, but this was different. I don't mean numb like they had fallen asleep, this numbness was unlike anything I had experienced before. My hands were so numb that my thumbs were pressed against my four fingers and I could not pry them apart.
That day was four and a half years ago and still very vivid. I stood there in my kitchen trying to open a box of "healthy whole grain" cereal and could not get the box open due to my hands. I decided not to worry about it and drove myself to the doctor. My hands remained numb for about an hour after that. I mentioned to my doctor the numbness and she suggested I call my primary care doctor.
I had a checkup with my doctor that week so I waited until then. That appointment changed my life. I finally decided to mention to my doctor about my getting sick no matter what I seemed to eat. She asked me to do a blood test and those results explained everything. It's never a good thing when you are in your doctors office waiting for results and she rushes in, in panic mode. My doctor was running around like a mad women. She finally calmed down enough to explain my results. My calcium and potassium levels were half of what they should be which explains why my hands were so numb a couple days prior. I was taking vitamins everyday so how come I was not absorbing them?
The next thing I know is I was being hooked up to an EKG machine and then rushed off into an ambulance. The next 2 weeks of my life were miserable to say the least. I was given potassium by an I.V. and that burned so bad that it brought me to tears quite often. They put me on a liquid diet and I was still getting sick from the chicken broth. The doctors were puzzled because I was not eating anything, yet I was still getting very sick. My second to last day at the hospital they decided to do a endoscopy, biopsy, and a colonoscopy all at the same time. I fortunately was completely under and could not feel a thing.
Two weeks after having that done I received a phone call which made all the pieces to the puzzle fit. A nurse called me to say that I had celiac disease. Those words plagued my head for the next couple of days. All I could think about was that I had a disease and how was that possible? The nurse sent me some information and briefly explained what I had. That was the day I heard the term gluten for the very first time which was in March of 2009. That very day I threw away everything in my pantry that contained gluten which meant everything.
I was basically starting over and throwing out everything I knew about food and starting fresh. I started reading up on celiac disease and gluten-free night and day. I was scheduled to see a nutritionist two weeks after being diagnosed and by that point I already knew more than she did about celiac disease. She seemed impressed by that.
Fast forward to now and the term gluten is widely used in my vocabulary. It's been over four years since I have eaten anything with gluten and am much healthier than I have been in my whole life overall. I make it a mission now to spread awareness about celiac disease teach those around me about it. People need to understand that it's much more than an allergy to gluten and wheat. Being diagnosed with celiac disease made me decide to become a nutritionist, which I am currently studying at school.
Something like 60% of the stuff you put on your face is absorbed into your skin. Ladies and gents I’m talking make-up, lotion, soap, anything like that. Your skin is your largest organ and it sure does like to suck stuff up. Let’s all take a minute to think about the things you put into and on your body… that’s a lot of stuff! Some experts believe that gluten cannot be absorbed through the skin. Now of course we all react differently to this gluten stuff. I am super sensitive and not only does my skin freak-right-out but I may perhaps even have an angry poo or two. Lotion, shampoo basically anything that touches your skin or is ingested, is something you should watch out for.
When I was first diagnosed I never thought about lotion as something I had to watch out for. When asked about the wheat or oats in my hand cream I simply said… ‘Well, I’m not eating it’. There are so many articles out right now about celiac disease and lotion or cosmetics. Google it, you will find a lot. Some of these articles are stating that gluten is too large of a particle to be absorbed through the skin. I have noticed that, for me, I will react to gluten on my skin. And there are so many other Celiacs out there that are having gastrointestinal problems due to the absorption through the skin and not knowing why they are feeling so bad. We aren’t eating our lotion or our makeup. It wasn’t until I joined the celiac society in my city that I learned that all gluten is bad gluten. Who knew?
There are cosmetics and bathroom supplies that are gluten-free. These can be hard to find because of the lack of ingredient labels but, my friends, there is always a solution. Call the manufacturer and talk to them regarding the ingredients/gluten content in the products that are in question. Ask them to email you the ingredient list of they are not able to give you a straight answer. Please never feel weird about calling the manufacturer; they are the only people that truly know what is in their products. If they can’t tell you what is in it please by all means do not buy that stuff! I have found that the manufacturer wants my money so they will do what they can to reassure me in their product. Sometimes I can get the product sometimes I can’t.
Now if you are less sensitive and don’t notice anything happening to your skin or internal discomfort just remember that sometimes we don’t feel that damage as its happening. You also might be one of the lucky ones that just plain don’t have a reaction to it on or through your skin. You are awesome and please enjoy for those of us that don’t partake.
You need to do right by you (you do you) and I believe as long as you are listening and really paying attention to your body you will know what is right and wrong for you.
Grocery shopping can be daunting to a new celiac and I think we could all use a little help. My help came in the form of a nutritionist. She gave me a page of ingredients that are gluten free ‘safe' foods and also ‘foods to avoid'. She told me to memorize these lists. At the time it seemed like an impossible task. To even learn how to pronounce some of these words seemed impossible. But memorize I did...eventually.
I, like the nutritionist, believe in memorizing the list. Yes you do have to read everything you buy. And I do mean everything!! Read your shampoo, read your plain vanilla ice cream, read your lotion. A lot of things have gluten in them! There have been times where I forgot to read or I figured that this product couldn't possible have gluten in it, and it did. This read everything system is not fun at first but it does become easier and faster with time.
I tend to say that things become ‘normal' normal is relative. I think we all strive to find normality on our regular lives. I'm not talking about what someone else deems to be normal but what is the norm for each of us. We as people are different and that should be embraced and even celebrated. We all react to things differently and we all react to gluten differently as well. Nothing should be taken as a national average, find your normal. At my house it's normal to have 2 butter dishes 2 toasters and this is fine for me. This may not be ideal but I'm happy knowing that I'm not going to being contaminated. One of my closest and dearest friends keeps a butter dish for me at her house just in case I stop by. To me this is a beautiful show of friendship and solidarity. I love this woman and this is a way that she and her family show me that they care, and maybe I should stop by more often.
For a new celiac or a person with a recently discovered gluten intolerance eating becomes more than something that happens a few times a day. Eating and grocery shopping becomes way more involved.
I don't often meal plan but I always make a list. The list (unless you are making a meal plan) is a guide line. There will be things that you might not be able to find or it won't be the brand you are used to. That is ok. I have heard some celiacs say don't try to substitute gluten-free for gluten foods, it won't be the same and you will hate it. At times this is true. But I feel that it depends on what you are substituting and your willingness to experiment. I will not ever make my own bread. I suck at it and it always turns out bad. So this I buy. But I bake mini muffins like a mad woman. Some recipes I find might have only one little ingredient that is bad, such as flour to thicken. In these cases I might substitute something like rice flour or xanthan gum or whatever I have in the cupboard. Some things are better than others and that takes a bit of experimenting.
The other day my mom and I attempted onion rings for the first time. They were terrible! But I had fun. I was bonding with my Mother while playing in the kitchen. This is a good thing. Neither of us were doing this for some sort of pride game. (Who is the better cook? …mom wins) This was us just trying to make a snack. So when it failed we stripped the onions and dipped them in pancake batter and fried them to a crispy golden yumminess. (The second time was the charm. The first attempt was with corn meal.)
In life it is important to know 1- you learn the best from failure and 2- other people's opinion of you, is none of your business.
When I made my famous mini muffins and brought them to work one day. Everyone in the office tried them, loved them and asked me if I could eat them. My response was ‘why would I make food that I can't eat?' hearing this, one girl had declined my double chocolate muffins because and I quote” no. I don't like cat food” wow. That was the first time someone had so rudely rejected my food outright. I was a bit hurt and annoyed for the first 30 seconds... Then I realized that I get to eat more muffins and I got over it.
Some people will never understand that gluten free is still food. My brother rejects gluten free food as well. For a short time I was living with him and his wife, when they were in Canada. My sister-in-law was interested in how I prep the kitchen and how to make sure we are all eating healthy and safe for me. And the brother would just complain. I remember we were sitting down for supper. I think we had steak, potatoes and some steamed vegetables. As he is eating I said something about how good this all is and this entire meal just happens to be gluten free. Nothing was altered just for me. He had nothing to say about that. (He is the oldest of 3 and ‘always right'. I have to get mine in whenever I can) the spice we used on the steak was g/f, plain veg is fine and I as per normal I used my butter they used theirs.
I really good friend of mine and her brother were driving through town and stopped by my house. He is vegetarian and has been for about 14 or 15 years. I knew after the long drive they both would be super hungry!! I was struggling with what to make. How do I make a gluten-free vegetarian meal?! I decided on lasagna. This turned out so good and it was so easy!!!! I had no idea that lasagna could be made without meat and still be so good. It was such a hit that they asked for some to take on the road with them.
When thinking about gluten-free food, stick to simplicity. I used to say plain with a side of boring but now I have embraced the idea of simple natural food.
Because I have been gluten-free for around 12 years, it is difficult for me to remember all the struggles that I faced when I was early in the process. I want you guys to know that it does get better. For me things are normal.
Everyone has their own story about how they were diagnosed. The lucky ones ‘found out’ early in life and could make the changes to their lives without too many problems. I had gone about this discovery in a convoluted sort of way with only a few hiccups.
I was around 20 years old and living at home still (I’m a late bloomer, I know). One day I decided not to go to work. I just wasn’t feeling well, nothing serious but I was not about to go and work another day at my crummy job. My work, of course, asked for a doctor’s note. This insignificant request actually changed my life…so thank you crummy job for starting my path to a healthier me! I went to a walk-in clinic close to my house and the doctor on duty had a look at my hands, gums and eyes and said that I needed to get my iron checked. This was strange to me as I came in for a note and not a series of tests. Well surprise, surprise...I was severely iron deficient and anemic due to the deficiency. This also explains my random fainting, fatigue and irritability.
I started months of iron pills, one per day for two months, two per day for two more months and four per day for yet again two more months. My Iron levels weren’t increasing (I had black, tar smelling poo, this is weird). Not knowing why this was happening, I started to jump from specialist to specialist until I finally saw a GI doctor. She took one look at me and said, "You have celiac disease. Now it could be [this, this or this] but I think it's celiac disease."
When I went for my biopsies I was nervous and hungry and the drugs didn’t keep me knocked out for the entire procedure. Luckily I fell back into a drug induced coma for a few more hours. The results were textbook my doctor said. My blood work came back negative for celiac disease but the biopsies were clearly of a person with this disorder. I have celiac disease. I am a celiac. I have to attempt to wrap my newly adult brain around this fact and that the stuff I have been eating my entire life, stuff I love. is so harmful. I think one of the reasons I struggled with this is that I believed that it just popped up. At the time I didn’t believe that I was born with this.
The first two or three months I was as diligent as a newbie can be. Then I had a bad day. I was at work and for some reason feeling bad for myself. I didn’t have a lunch prepared. For people newly living gluten-free in 2001 it was bad. People didn’t understand the allergy (2003 the height of the Atkins diet) and I didn’t truly understand the consequences of eating gluten. I went to a sub place and got me a pizza sub with triple cheese. That’s right triple cheese. Don’t look at me like that, I’ll pay the extra. I want that damn cheese. It was so good!!!!! Soft and warm! At the end of my shift, about 3 hours later, I was in the cash office with a good friend of mine and I was so weak that I couldn’t pick up the dimes to count them. I looked over to my friend and said "Dar I don’t feel good."
I will never forget the look on her face. I apparently looked translucent. I’m a pale kid, Irish/English decent; there isn’t much hope for a tan on me. Darlene made sure I got the heck out of there because of how bad I seemed to get so fast. I spent the next 3 days in violent pain. I can say to you now that I have felt the depth of my intestines. How cool is that? How many people know that feeling? Maybe a few but no one I know. Those three days sucked and I never questioned this ‘no wheat’ thing ever again! I have been gluten free for 12 years. There is always more to learn and read about. There are always new celiacs to help and discover how easy and good gluten free food can be!
I love to bake and I cook a lot at home. I am lucky in that I have lived with people that cared enough about me to keep an open mind…and not call it cat food.
Today Marks the Finalization of the Food and Drug Administration's (FDA) Gluten-Free Labeling Regulation
- By Scott Adams
- Published 08/2/2013
Today marks the finalization of the Food and Drug Administration's (FDA) Gluten-Free Labeling Regulation, which will assure consumers that all products labeled gluten-free in The United States must follow standardized governmental guidelines.
Nearly 10 years ago, the Food Allergen Labeling and Consumer Protection Act (FALCPA) required the labeling of the top eight allergens in food. A second and separate part of FALCPA required the FDA to define regulations for labeling products as gluten-free. After exhaustive investigation, two public comment periods, and extensive meetings with the Gluten Intolerance Group as well as other interest groups, this ruling provides standards for labeling products designed to protect the health of persons with gluten-related disorders who require a medically prescribed gluten-free diet for their health.
The ruling sets the safety threshold for labeling products gluten-free at 20 ppm or less, and defines the use of ingredients and labeling terms. Manufacturers are being encouraged to comply with the regulation as soon as possible. The FDA standard is consistent with the Codex Alimentarius labeling guidelines set by the World Health Organization. The United States now joins the ranks of several major countries around the world that have adopted similar standards, including the European Union and Canada. Since 2011, The United States' gluten-free food industry has doubled annually in size and is projected to reach $8.5 billion by 2015, according to the Nutrition Business Journal. The Gluten-Free Labeling Regulation allows for numerous new products to be safely available to consumers in this ever-expanding marketplace.
"This ruling provides assurance to consumers that products labeled gluten-free are truly safe for persons requiring a gluten-free diet," states Cynthia Kupper, RD, Executive Director of the Gluten Intolerance Group of North America.
The Gluten Intolerance Group of North America applauds the Food and Drug Administration's (FDA) completion of the Gluten-Free Labeling Regulation and is encouraged to see this triumph in standardization for the gluten-free community.
About the Gluten Intolerance Group of North America (GIG)
GIG has been serving the needs of the gluten-free consumer for 39 years through its social and food industry programs, which provide education and support for living healthy gluten-free lifestyles. These programs include the Gluten-Free Certification Organization, Gluten-Free Food Service Certification, as well as the international Chef to Plate Gluten-Free Awareness Program, which is conducted with restaurants in several countries. GIG also offers many educational programs and materials, support groups, and summer camps. To learn more about the Gluten Intolerance Group visit www.Gluten.net.
Contact: Cynthia Kupper, Executive Director (253-833-6655)
- By Welda Johnson
- Published 05/28/2013
Many people with celiac disease of gluten sensitivity will be happy to know that The Gluten-Free Mall now offers free non-frozen food shipping within the 48 contiguous states on orders over $75! Hopefully this will make gluten-free food more affordable for those who need it most. Use coupon code "free123" and be sure to read the rules.
CYE: Celiac Youth of Europe is an umbrella organization for all celiac youth groups in Europe and consists currently out of 17 participating countries. They meet once a year and initiate a project to raise awareness about CD or help improve the life of coeliacs. One of these annual projects was the Bulletin Beat the Wheat.
Beat the Wheat: The Bulletin is a tool for informing coeliacs about various topics. A normal bulletin therefore encompasses articles about travelling, recipes, diagnosis stories, portraits of famous persons with CD, medical curiosities etc. By the way, all the work done considering this project is voluntary. As the Bulletin is constantly developing, they are always looking for participants from all over the world in order to broaden their coverage. So if you would like to submit an article telling readers about life with CD in your region, or you have an interesting story to tell you are more than welcome to do so.
Their site is: http://issuu.com/beatthewheat/docs/btw_bulletin4
- By Scott Adams
- Published 01/21/2013
King’s Delight, a Gainesville, Ga. establishment, is recalling approximately 1,572 pounds of frozen chicken nuggets labeled as gluten-free because they contain wheat, a known allergen that is not declared on the label, the U.S. Department of Agriculture’s Food Safety and Inspection Service (FSIS) announced today.
The product subject to recall include: [Labels]
8-oz. cartons of “APPLEGATE® Naturals Gluten-Free Chicken Nuggets.”
The establishment number “P-2617” can be found printed on the side of each carton. The products were packaged on Sept. 19, 2012. The lot number “210864” and the best before date “08/28/13” are printed on each carton’s side panel. The UPC code “25317-00556” is printed on the back of each carton. The products were distributed to retail stores in Indiana, Maryland, Oregon and Washington. Consumers who purchased these products should return them to the store for a full refund.
The firm notified FSIS of the problem after a consumer familiar with the product noted a color difference. Upon investigation, it was determined that chicken nuggets containing wheat were mislabeled on Sept. 19, 2012. FSIS and the company have received no reports of illness or adverse reactions due to consumption of this product. Anyone concerned about an illness or adverse reaction should contact a physician.
FSIS routinely conducts recall effectiveness checks to ensure that steps are taken to make certain that the product is no longer available to consumers. When available, the retail distribution list(s) will be posted on the FSIS website at www.fsis.usda.gov/FSIS_Recalls/
Consumers with questions regarding the recall should contact Gerry Clarkson, Applegate Consumer Affairs Specialist, at (800) 587-5858. Media with questions regarding the recall should contact Joe Forsthoffer at (410) 251-0363.
As thanksgiving approaches my stress level increases. It is now not only my own diet that I have to worry about but also the diet of my 13 year old daughter. Thanksgiving being such a family oriented and traditional holiday, especially in the realm of food, makes it very difficult to maneuver. Being a guest at my brother's house, I dare not try to break the family tradition of stuffing the bird with my mother's oyster stuffing. It wouldn't be Thanksgiving for everyone else. So as a result I separately make a turkey, cornbread stuffing and a pumpkin pie to take to immerse my daughter and I in the tradition. This year is especially difficult being that I have been invited to the home of a couple of new friends. I do not want to decline, I do not want to cart my own food and I certainly do not want them to adapt their dinner for me. This has been my dilemma many times when I have been invited to eat at someone's home. It is much easier to eat out these days, but eating in even with the best of intentions from your friends, is very difficult.
Celiac disease has a very unique trait that I have come to notice in the years I have been involved with it: people connect to it in a way that people with almost all other diseases do not...
People with celiac disease will often say "I'm a celiac".
...but you do not hear anyone ever say "I'm a cancer" or "I'm a heart disease" or "I'm an MS".
The exceptions seem to be food related: "I'm a celiac" and "I'm a diabetic". Why do we become the disease? Is it because it affects what we are eating every day? Whatever the reason, I don't know that it's healthy.
A huge portion of regaining balance and having a healthy attitude is to heal and see ourselves as healthy again. Perhaps walking around and saying "I am x-disease" whether we're talking celiac or diabetes is not the way to go.
Not being able to eat gluten simply means something from our diet has been removed or replaced. The conversation can end there. I, for one, am going to consciously make the effort to stop saying "I am a celiac" because it doesn't define me. I am me: healthy, happy, and complete. I am not a disease.
Just food for thought and I'm so interested to know how others feel about this...
- By Scott Adams
- Published 11/1/2012
Rudi's Organic Bakery, Inc. has initiated a voluntary product withdrawal due to the possible presence of metallic foreign objects in select products or product packaging. Products withdrawn from the market include only Rudi's Organic Bakery Multigrain Oat Bread, Rudi's Organic Bakery Colorado Cracked Wheat Bread, and Rudi's Organic Bakery Cinnamon Raisin Bread.
No other Rudi's Organic Bakery or Rudi's Gluten-Free Bakery products are included in this voluntary market withdrawal.
The affected products include the lot codes below. Lot codes are printed on the quick lock closure, which is the plastic piece that seals the bread bag, and the UPC code is listed on the barcode on the bread package.
- UPC: 0-31493-82888-8 Rudi's Organic Bakery Multigrain Oat Bread (22oz) Lot Code 1-173-R
- UPC: 0-31493-54373-6 Rudi's Organic Bakery Colorado Cracked Wheat Bread (22oz) Lot Code 2-193-R
- UPC: 0-31493-92183-1 Rudi's Organic Bakery Cinnamon Raisin Bread (24oz) Lot Code 1-273-R
Consumers with the lot codes and UPC codes listed and/or who have questions, should contact Rudi's Organic via e-mail at firstname.lastname@example.org or call 877-293-0876 from 8 a.m. to 6 p.m. (MST), Monday - Friday.
In a recent article on the Science 2.0 blog titled “Celiac: The Trendy Disease for Rich White People”, a blogger named Hank Campbell rants and raves about the current gluten-free, or as he sees it, celiac disease fad. He begins, “Are you white and a little resentful that black people get their own cool disease, sickle cell anemia? There is good news for you. Celiac disease is all the latest rage and you can be any color at all and claim it”. He keeps this tone up throughout the entirety of the piece: he is bitter, but it would seem that he is bitter about the general behavior of “liberals”, rather than fad dieters specifically.
While Mr. Campbell is likely just a grumpy old man who we shouldn't pay any heed to, his views seem to echo certain opinions within the celiac disease community. Many celiac sufferers do (often justifiably) feel that the “fad” status of the gluten-free diet has robbed them of their credibility: they feel that even though they HAVE to adhere to a gluten-free diet to stay healthy, they now run the risk of being perceived as fad dieters (by people like Hank Campbell). Hank mentions “real Celiac victims”, but it's almost as if he doesn't believe they exist, because he seems to think that a meaningful number of people are not just adopting the gluten-free diet, but pretending they have celiac disease. The brunt of his critique falls on the 'fad celiac disease sufferer', if such a thing even exists. I am sure he would have you believe is the majority of people on the gluten-free diet right now.
The problem with Mr. Campbell's writing (and really, his opinion) is that he is raging against a stereotype that I am not sure exists. Who is pretending they have celiac disease? He spends a lot of words trying to prop up a straw man, and to what purpose, I'm not really sure (some commentators have posited that he has a political or pro-vaccine agenda). But he is minimizing the fact that celiac disease is a real disease and many people HAVE to abide by a gluten-free diet in order to preserve their health. It is not a “trendy disease for rich white people”.
The real message we should be taking away from Mr. Campbell is that celiac disease is ultimately a disease, not a club. The gluten-free diet may be experiencing an explosion right now, but when you think about how hard of a diet it is to stick with, the reality is that many of these fad dieters will quickly lose interest and drop it anyway. Ultimately, the “gluten-free fad” is only helping the celiac community, as more people than ever are getting diagnosed. It is hard not to be embittered by people who adopt a gluten-free lifestyle halfheartedly, and only to stroke their own egos, but that will pass, and if it helps more people get diagnosed, that is very positive thing.
I have noticed within the last year or two that the gluten free diet is becoming more and more popular among non-Celiacs. It’s been on the news, celebrities are talking about it, and major restaurant chains are advertising new gluten free options. However, I have really started to doubt the sincerity of some that are embarking on a gluten free diet.
I am not trying to discourage anyone from trying a gluten free diet. In fact, the more people that go gluten free the easier and cheaper my food options become. However, I have come to the realization that going gluten free has become a fad. A fad like those awesome stripped toe socks I wore in high school with my flip flops and tennis skirt! Gluten free being a fad is not only extremely irritating but can potentially make all the progress we have made in more widely available food options obsolete. Call me paranoid but I have nightmares that the "ease" (I use that term quite loosely) of attaining gluten free foods will cease to exist and we'll be thrust back into a world of eating cardboard and plywood!
As the saying goes "just because you're paranoid, doesn't mean someone isn't out to get you!" There are a number of examples of fad diets and even allergies that have lost their "popularity" and faded from our minds. A few years ago you couldn’t find a peanut on an airplane and the "South Beach Diet" stamp was on foods up and down the grocery aisle. It's just in the last year or so that people have started giving up on their "no high fructose corn syrup" diets. Everything from vegan-ism to the Atkin's diet eventually fades from the mainstream leaving behind the few faithful followers. If gluten free diets are in fact becoming a fad, it will leave patients with Celiac Disease as the final faithful followers. It will be like going back to technology that was popular in the early 90's.
The only idea I have to counteract this potential assault on how "easy" (again, using the term very loosely) my diet has become is to educate as many people as I can about the diet. So much so that I am starting to sound like a broken record standing on a soap box. I think all gluten free dieters, at least the serious ones, need to band together to make sure we aren't taking one step forward before we take three steps back. You can do this by doing things, like calling Lays and informing them that your (or my) favorite barbeque potato chips are now off limits because they changed their recipe to add barley malt, or supporting company's that change a simple ingredient so a product is gluten free, like Chex cereals. We are the consumers and if we raise enough of a commotion companies will listen. After all, they are in the business of making money! Another important step is discussing with stores about stocking more gluten free options. If you're willing to buy it, most places will try to sell it to you.
Going beyond contacting retailers and manufacturers, educating the public who fall for fad diets is also really important. I don't know how many times people have said to me "hey, I was thinking about trying a gluten free diet." I can't help but think that 99% of the time they are not serious, simply jumping on the rice cracker and tapioca starched bandwagon. There appears to be this vast misconception that cutting gluten from your diet it like cutting fat, calories, sugar, high fructose corn syrup, caffeine, fast food, carbohydrates, and dog food. Okay, maybe not so much the dog food! Still, I cannot stress it enough GLUTEN FREE IS NOT A DIET IT'S A LIFESTYLE!!!
Two of my favorite books regarding Celiac and gluten free diets are Living Gluten Free for Dummies by Danna Korn and Wheat Belly by Dr. William Davis. They both address various medical conditions that can, and have been treated by going on a full gluten free diet. Everything from autism, diabetes, heart disease and rheumatoid arthritis. In some cases, patients not only lost tens to hundreds of pounds, but showed an incredible amount of improvement in their overall health by being able to stop taking certain medications. In rare cases, a few people have even been essentially cured of their ailment. The key to the success, as pointed out by both authors, is a complete dedication to going gluten free. That doesn't mean cutting back on how much Wonder Bread and Twinkies you eat, it's a full commitment. All or nothing.
For some reason, that is the key that seems to be missed by most people without a direct medical problem requiring a gluten free diet. They seem to think they can cut out half of the gluten in their diet, or not eat gluten on Thursdays and Sundays between 12:00 am and 3:57 pm. I like to look at it this way: if something is poisoning your body, if it is preventing your body from functioning properly and causing you pain, weight gain, and a host of other problems, then don't you want to give it completely up? You wouldn't realize you're stomach problems and hair loss are from the arsenic in your morning coffee and keep putting it in the coffee. And if something is poisoning your body, how will you truly know without removing it from the diet? Unfortunately, today's medical technology does not allow testing for a gluten sensitivity or intolerance, it is done largely by trial and error. You cannot do trial and error if you don't do a proper trial!
I realize that there is a lot of hesitation in embarking on a gluten free lifestyle. When I began mine, I had little cartoon pizzas and doughnuts circling the top of my head. It's a momentous undertaking and gluten items will pop out at you at every corner disguised as over the counter medications and chicken gravy. But embarking on such a lifestyle cannot only change your life, but prolong it! You can feel better, have more energy and be more active all by cutting out that pesky little protein. If you are faithful and diligent on a gluten free diet and still feel tired, or have high blood sugar, or are struggling with weight loss and you want your fried chicken and artificial bacon bits back I won't stand in your way. But like the cliché says if something is worth doing, it's worth doing right.
Perhaps I shouldn't take the gluten free fad as an insult, but I do. I see it as making a mockery of my lifestyle. I would still encourage anyone who wants to see if it will help them to give it a try. But if you're going to do it, do it right!
Last month, Portland, Oregon mayor Sam Adams declared May 16th to be Portland's “Gluten-Free Beer Day”, falling within what has come to be considered Celiac Awareness Month by many celiac organizations. The declaration seems to be borne of equal parts enthusiasm for Portland brewing culture, and concern for celiac disease awareness. A number of gluten-free brewers attended the official ceremony at Portland City Hall, including Omission Beer, Deschutes Brewery and Harvester Brewing.
Sam Adams (of no relation to Samuel Adam's Beer, ironically) gave a statement that was not unlike a public service announcement. He cited common celiac disease statistics and facts: 1 in 133 Americans have celiac disease, more than 95% of celiacs are undiagnosed or misdiagnosed, gluten-free diet is the only treatment for the disease, etc. He went on to reason that since Portland is home to over 50 craft breweries, many of which already produce gluten-free beer, Portland should have an official day to spread celiac disease awareness among breweries and beer-drinkers.
In a much-needed move toward reliable labeling of gluten-free products, Frito-Lay has commenced an effort to test, verify, and eventually label its already gluten-free products. As one of the largest food manufacturers in the world, Frito-Lay (and PepsiCo, its parent corporation) is well-positioned to make a significant difference in the lives of Americans with gluten sensitivities (the initiative is exclusive to products in the U.S.).
Celiac disease sufferers should be wary of putting too much trust in this labeling effort though. As evidenced by the recent controversy surrounding Domino's “gluten-free” pizza crust, gluten-free is not standardized terminology (though the NASSCD is trying to remedy this) and gluten-free is becoming a popular, i.e. profitable market.
Unlike Domino's offering though, it would seem that Frito-Lay is doing a thorough job of substantiating their gluten-free claim. They are working with the Food Allergy Research and Resource Program to test both ingredients and finished products for the presence of gluten. Any products containing less than 20ppm of gluten off the manufacturing line (in accordance with the FDA's Proposed Rule for Gluten Free Labeling) will soon be labeled as gluten-free.
It still remains to be seen how their labeling scheme will be rolled out, but looking at their website's guide to gluten-free products, they currently separate their products into two varieties of products for gluten-conscious customers. They are describing their verified and tested (less than 20ppm) products as gluten-free, and their untested, 'kind of' gluten-free (potentially manufactured on gluten-contaminated lines) products as “Products Not Containing Gluten Ingredients”. The website makes it pretty clear what the two designations mean if you read the accompanying text, but there is room for concern if they attempt a labeling scheme that obscures the reality of the products. One would hope they will only label the tested and verified products, and leave the untested ones as they are, to be found by gluten-conscious (but not deathly allergic) customers who have done their research.
Frito-Lay seems benevolent enough, with at least some concern and regard for the celiac population, so hopefully the labeling scheme will reflect this. In addition to their labeling effort, they have partnered with the Celiac Disease Foundation and the National Foundation for Celiac Awareness to commence a celiac disease awareness initiative. It will utilize Frito-Lay's partnerships and social media channels to provide educational content in English and Spanish, hopefully reaching the undiagnosed and unaware portion of the estimated 21 million gluten-sensitive Americans.
North American Society for the Study of Celiac Disease Calls for Industry Standardization of "Gluten-Free" Labeling
- By Scott Adams
- Published 05/18/2012
The North American Society for the Study of Celiac Disease (NASSCD) today announced a call for all restaurants and food manufacturers to properly label gluten-free products to avoid confusion that has the potential to threaten the health of people with celiac disease. (View the statement NASSCD also issued this week at http://www.nasscd.org/wp-content/uploads/2012/05/NASSCD-Statement-on-Dominos-Pizza.pdf .)
The move comes after two restaurant chains, Chuck E. Cheese and Domino's Pizza, last week separately announced new gluten-free food product offerings that provide significantly different levels of safety for people with celiac disease.
Celiac disease is a genetically inherited autoimmune condition that can damage the small intestine, and can lead -- if untreated -- to further serious complications, including anemia, osteoporosis, infertility and even certain cancers. Celiac disease is triggered by the consumption of gluten, a protein found in wheat, rye and barley.
"We want to eliminate the market confusion that has surfaced recently, provide clarifying facts and information about gluten-free labeling to food manufacturers, and ensure the public's safety," said Stefano Guandalini, M.D., president of the NASSCD, and founder and medical director of the University of Chicago Celiac Disease Center. "Additionally, there is too much variance from manufacturer to manufacturer."
The announcements of new gluten-free pizza offerings by Chuck E. Cheese and Domino's Pizza are a case in point.
In its May 11, 2012, press release, Chuck E. Cheese described a process intended to protect customers from inadvertent gluten exposure: "To avoid cross contamination or accidental exposure to gluten ingredients in Chuck E. Cheese's kitchens, the personal cheese pizza, manufactured by USDA/FDA-approved, gluten-free facility Conte's Pasta, will arrive to stores in frozen, pre-sealed packaging. The bake-in-bag pizza will remain sealed while cooked and delivered and until opened and served with a personal pizza cutter at families' tables by the adult in charge."
On the other hand, in a May 7, 2012, press release, Domino's Pizza announced a gluten-free pizza crust that it said was "appropriate for those with mild gluten sensitivity" but not for people with celiac disease because "Domino's cannot guarantee that each handcrafted pizza will be completely free from gluten."
"Our position at the NASSCD is that a product is either gluten free or it is not," Guandalini said. "There is no in between. In fact, gluten exposure -- including in minute amounts from cross-contamination -- can be detrimental to people with celiac disease. Repeated exposure can lead to potentially grave medical complications, not to mention a poor quality of life."
According to Guandalini, as little as 10 mg of gluten in a day can reactivate -- in very sensitive patients -- celiac disease.
"We strongly encourage Domino's and other restaurants and food manufacturers to properly label and market gluten-free offerings, as so many responsible companies have done" Guandalini said. "There should be no need for disclaimers. A product is gluten free, or it is not. Marketing a product to be "sort-of" gluten free or "low" gluten is completely useless for those who require the strict diet."
The NASSCD, along with other organizations, has been working with the U.S. Food & Drug Administration to put forth a "gluten-free" standard. That standard would require that, in order to claim a food product as "gluten free," the end product must contain less than 20 parts per million (ppm) of gluten (equivalent to less than 20 mg in about 2.2 lbs.). Anything short of this standard would be considered false advertising.
The NASSCD was founded last year to advance the fields of celiac disease and gluten-related disorders by fostering research, and by promoting excellence in clinical care, including diagnosis and treatment of patients with these conditions. Approximately 1 percent of the population is estimated to suffer from celiac disease, though the condition often is undiagnosed or misdiagnosed. Non-celiac gluten sensitivity is a less well-understood condition with a broad range of symptoms, including fatigue, migraine headaches and digestive disorders, and whose mechanism or cause is not yet identified, and that presently cannot be diagnosed by any medical test. Visit the NASSCD at www.nasscd.org .
Stefano Guandalini, M.D., is president of the NASSCD, and founder and medical director of the University of Chicago Celiac Disease Center. He is also a professor of pediatrics, and serves as chief of the Section of Gastroenterology at the University of Chicago Comer Children's Hospital. Contact Dr. Guandalini at: email@example.com.
SOURCE: The North American Society for the Study of Celiac Disease