My Five Cents: Help Me Understand Gluten-Free

gluten-freeI get emails all of the time from companies selling gluten-free products. I usually forward them to my sister who is researching gluten-free food because one of her daughters is highly sensitive to gluten. My 14-year old niece tested negative for celiac, but once my sister put her on a gluten-free diet, my niece’s body responded immediately. All of her symptoms cleared up. That’s the good news.

The confusing news comes from the US Food and Drug Administration definition and guidelines and definition for the term “gluten-free.” To label  food “gluten-free,” a food must contain less than 20 parts per million of gluten. The rule also requires foods with the claims “no gluten,” “free of gluten,” and “without gluten” to meet the definition for “gluten-free.”

I realize there are varying degrees of sensitivity to gluten just like there are varying degrees of sensitivity to nuts, shellfish, and eggs. It seems gluten-free should be just that—without gluten. None. Zero. Nada.

I’m sure many of you are still on the learning curve of gluten-free. My sister had taken celiac courses, read zillions of internet sites, and spent hundreds of dollars experimenting with food packaged as gluten-free.

She told me a story about a woman she met who gets “glutenized” easily. She kissed her husband who had just consumed a beer and her body went into meltdown.

Products are one aspect of this problem, but what about restaurants that offer gluten-free food? To be truly gluten-free, I would think a kitchen would have to use different equipment to avoid cross-contamination. Many people have advised my sister to cook at home if she wants absolute control. But my niece is 14! She loves to hang at other people’s houses. But even a backyard barbecue with meat and fresh vegetables poses a problem if the host has marinated the meat in soy sauce or another condiment with gluten.

If you are experiencing some of these issues, I’d love to hear from you.

16 comments on “My Five Cents: Help Me Understand Gluten-Free

  1. My book club got off track and talked about gf. One woman is using as a way to loose weight. I have a friend with celiac who is miffed at her for using gf as a fad diet. She is so sensitive she can’t eat in restaurants very often. She doesn’t trust them.

  2. I’m happy to share with you what gluten-free means and what it’s like from the perspective of someone who’s extremely sensitive and getting more so each year.

    Like the woman you mentioned who’s easily glutened, if I kiss my husband after he drinks beer or eats a sandwich, I break out into hives and rashes – and get a weird bump on my face in the exact same place every time that lasts for several days, which is really strange. He also can’t use products with gluten because if I rub up against him – here come the hives and rashes. If I’m the one using products with gluten – I get to experience itchy skin and blisters, oh, and hives and rashes that won’t go away. So when people say it doesn’t matter if beauty products and make up contain gluten….yes it does and please stop arguing about it.

    If I shake someone’s hand after they’ve touched one of those delicious looking appetizers being passed around that I can’t eat… here come the hives again.

    What if I actually eat gluten by accident? Two scenarios.

    If it’s actually digested, I’ll immediately feel nauseous and later on, experience excruciating stomach pains that last for hours until I possibly cry myself to sleep. The next day I’ll then run a fever for about 24 hours. This happened over the weekend when I had to return an order of crab claws because it had bread on the dish. But they didn’t give me a new dish, they just removed the bread, so unseen bread crumbs remained in the broth. So if you work in the restaurant industry, please don’t do that. Ever. I’m not sending it back to be a b*tch. There’s actually a medical reason.

    Sometimes though, if I accidentally eat gluten, my body will completely reject what I ate and decide to not digest it – and that’s actually the worst-case-scenario because it doesn’t happen immediately – I’m never sure when it will actually happen. Typically though, it’s around six hours later. Without any warning, I’ll start to throw up off and on, uncontrollably, for about three hours until every last morsel of deliciousness is out of my body. And then suddenly I’ll feel fine, except for the fact that I’m exhausted from heaving for the past three hours.

    So please know it’s not a myth. When people find out I have to avoid gluten because of Celiac and then proceed to tell me that they, too, are trying to not eat gluten ‘just to try it out’ and know how I feel … I apologize for the look of disdain on my face, but no, you don’t know how I feel (and trust me, you don’t want to). At the same time though, I also appreciate that, although they are doing it because it’s a diet fad or whatever, it’s bringing awareness, more people like yourself are writing about it, and in the end, that means I and everyone else like your niece who have to deal with this, will have more options and better food available to eat.

  3. Have a daughter with celiac, diagnosed about 4 years ago. been battling this for awhile now. you are right about the backyard bbq, many times she would end up eating a salad when everyone else has a burger or dog. and then it is a question on the salad dressing…she ate a lot of dry salads with no dressing :(

    first, the fad of people who are on gluten free diets to lose weight is laughable. is it possible to lose weight this way? sure, but gluten itself is not a high calorie item. will one lose weight by avoiding gluten? not if they consume too many calories.

    second, celiac and gluten intolerance has zero to do with exposure to antibiotics or other outside elements. it is an intolerance by the digestive tract to the gluten components. people are born this way.

    third, in answer to your question, yes one can go out to restaurants and be safe. it is important for the restaurant to be careful on cross contamination, and those who provide a gluten free menu understand this. if you go to a restaurant and they say “we don’t have gluten free selections, but we can make anything gluten free” run away. quickly. the problem with restaurants that say they can make items gluten free, when they don’t have a seperate area/line, is the cooks don’t understand what has gluten and what doesn’t. sure the food may not have breading, but the sauce may have used a contaminated item for thickening.

    gluten is everywhere in our world, it does take effort to avoid it in food. the good news is there is so much more awareness today, so much more education and selection of products that have removed it, a gluten intolerant can go out and be just like everyone else…sort of.

  4. I will ask. She has always been anti-medicine and preferred natural treatments. But that’s a good question., Thanks,N

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  6. thanks for your thoughtful response. the diet thing makes me nuts. whoops, can’t type that or i’ll go into cardiac arrest. kidding aside, great response to restaurant situation. What guidelines do you use when reading the labels of products labeled “gluten-free”?

  7. I cut out gluten for health reasons and it has helped me tremendously. My problem is in how my body breaks down the carbs and deals with sugar. I realize that all pastas are not made the same. I understand that some GF foods are really “empty carbs”. I still read package ingredients, and when I have a carb attack and absolutely must have pizza or pasta, I will opt for the GF variety. So to all those naysayers who say that the GF diet is for the birds, think about the fact that our bodies were not made for the specialized strains of wheat that so many companies use in our over-processed foods. I want to get back to basics, and I’m really excited to see the new varieties of pastas and breads made using ancient grains and legumes. I don’t say I’m gluten free for diet reasons, it’s for better health. Who needs a gut full of gluten. Get real, people.

  8. We may be too trusting, but we feel comfortable with using products that are labeled gluten free. the FDA has issued guidelines for the use of the label, bringing a standard into use that should provide consistentcy.

    The key is to be smart about what is a gluten ingredient and what is OK to eat. We look at all the items on the package’s list, one very important exercise for a gluten intolerant person to do is learn what is and what isn’t good to ingest. While it may seem easy it isn’t. Oatmeal for instance: some oats have glutens, some don’t. Buckwheat is not a gluten even tho we call it a wheat. There are plenty of materials to read and get smarter.

  9. “second, celiac and gluten intolerance has zero to do with exposure to antibiotics or other outside elements. it is an intolerance by the digestive tract to the gluten components. people are born this way.”
    My daughter and a friend were diagnosed in early 20′s and late 40′s respectively with no previous problems. My daughter was prescribed antibiotics way too often as a child – I am not sure of my friend. The jury is still out as to the relationship between antibiotics and intolerance but neither of them were born that way.

  10. “Celiac disease is hereditary, meaning that it runs in families”
    http://celiac.org/celiac-disease/what-is-celiac-disease/

    “Celiac disease is genetic, meaning it runs in families.”
    http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

    “Celiac disease (CD), also known as celiac sprue or gluten-sensitive enteropathy, is a genetically linked autoimmune disorder that can affect both children and adults”
    http://www.csaceliacs.info/celiac_disease_defined.jsp

    there are many, many more as the genetic link is established.

  11. As a restaurant owner, I find “gluten free’ is more of a problem with the customers, who will call us and say “what do you mean, you don’t have gluten free selections” ? and at that point, you have to explain that even if we did, our kitchen is not entirely gluten free. To me, it’s like a Kosher menu. The whole kitchen has to be Kosher.

  12. interesting you feel “the whole kitchen” needs to be gluten free.

    my kitchen at home isn’t, we just take care to clean surfaces and implements so there isn’t cross contamination. we have 2 toasters so the gluten bread always uses one and gluten free bread uses the other. yes it takes some effort yet once you adjust it is easy.

    why don’t you talk to consilient and learn how it works at fireside? or lombardy who makes it work at penne pomodoro with pizza and pasta? the kitchen does not have to be “entirely gluten free” such as at company cafe. the kitchen just needs to be managed correctly.

  13. Mavdog, why don’t you read the disclaimer on Lombardi’s gluten free menu? “We are not a gluten free kitchen”.

  14. EN B, that’s Mavdog’s point – they’re not a gluten-free *kitchen* yet they have a gluten free *menu*. A gluten sensitive friend of mine has successfully eaten gluten free dishes at restaurants that otherwise have plenty of gluten. Rise No. 1, for example, can do some of their soufflés gluten-free. She loves that place.

    Back to the original post – for my friend, her whole life she’s had issues with feeling bad after eating, but she never figured out why. It got particularly bad once, and she was tested for celiac – negative. But she tried a gluten-free diet, and felt fine. She lost weight at first because it was hard for her to find foods without gluten, but that was several years ago and it’s pretty easy for her to find foods and restaurants now so she’s back to her original weight. And due to her husband, her kitchen isn’t gluten free. But they make it work.