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Why are people who have Celiac Disease/Gluten Intolerance or Food allergies so paranoid?

Updated on February 27, 2013

Is Gluten Free a Fad?

It seems like more and more diners are going gluten free. Preschools and kindergartens are asked to accommodate increasing numbers of kids with food allergies or gluten intolerance. Planning a birthday party, play date or even a social evening can become a nightmare of food juggling. Some believe that the gluten free dining thing is just a passing fad, that as soon as consumers have convinced major food manufacturers to label gluten (or at least gluten free) products, they will move on to bigger and better things. Or, more likely, to the next big food fad.

While the term gluten free is beginning to seem trendy, the facts of the matter are that a significant portion of the population need to be gluten free for medical reasons. Celiac Disease is an autoimmune condition that triggers physical damage of the digestive tract when a sufferer ingests even a tiny amount of gluten through toast, croutons or minuscule crumbs left on a plate of cheese and crackers. Some people have established an irrefutable correlation between their unpleasant, sometimes debillitating, symptoms and their ingestion of gluten leading them to be diagnosed with 'gluten intolerance'. This intolerance is suspected by some to be an early stage of Celiac Disease, or possibly a difficult to diagnose form of Celiac. There are also some individuals who have anaphylactic (life threatening) reactions to gluten.

Of course, there are a few who jumped on the bandwagon of better diagnostic tools and increased awareness. There are those who go Gluten Free for the fun of it, until they realize it's really no fun at all and they move on to the next dietary trend. There are those who are in on it in hopes of weight loss, or simply trying it out in hopes of a cure for a myriad of vague symptoms. But that doesn't make gluten free dining itself a passing phase. For those with an actual medical condition, gluten free is a permanent lifestyle change.

So Don't Eat Wheat, What's the Big Deal?

Changing the way you eat is monumental. That might sound like hyperbole, but it's not. It's also not something you can really comprehend if your only dietary experience has been experimenting with more veggies or eliminating fat or limiting salt or sugar. When you are told to eliminate an entire food family from your diet for health reasons, it's like shifting your house from the bottom of the cliff to the top. Sure, you're on a stronger foundation now. And you don't have to deal with all that flooding during high tide. But, you have to get used to where things are. You constantly step outside expecting to sink into the sand, and you find yourself preparing for high tide even when if you think about it, it won't hit this far up the cliff.

People who have true gluten intolerance have been experiencing unpleasant digestive symptoms for years. Eating the wrong thing can trigger nausea, bloating, sharp pains and even uncontrollable bouts of diarrhea. There are a variety of other symptoms that can occur as well, from an intensely itchy and unsightly rash to headaches, jittery anxiety like feelings and depression. There's also the knowledge that untreated Celiac Disease leads to malnutrition, osteoporosis and even cancer. Just few crumbs once a week can keep the digestive tract in a state of enough irritation to keep the body from absorbing any nutrients.

However, once a person is convinced of their own personal need to be gluten free, they still need to live their lives. They still need to eat three meals a day, and maybe even a few snacks. They still need to go to school or work, they still need to attend family functions, and they still want and need to socialize. Most of the time, food will work it's way into that lifestyle and need to be addressed. They also need to find ways to address their need for a gluten free lifestyle while fending off those who are concerned about a dietary change signaling an eating disorder.

Many people take eating for granted. A coworker shows up with a box of donuts to share. Cake appears when a colleague has a landmark birthday or announces their retirement. Working late? Pizza delivery. Skip lunch? Someone's bound to call for take out. And then there are the barrage of holiday parties. You can go, and there will be buffet tables laden with dishes (all of them wonderful ice breakers) or you can skip the party and the social networking that goes with it.

When you're diagnosed with a condition requiring strict dietary adherence, eating out becomes a nightmare. The best way to defend yourself against a painful and potentially embarrassing reaction is to ask questions. Lots of questions. Many people who dine with or serve gluten free diners will criticize the sufferer. If it's that bad, you should go live in a bubble. While bubble life would make things infinitely easier for the chef, it's not a viable lifestyle for anyone else. Gluten free or not, we all have to eat.

Strawberries and sugar...a gluten free snack  (If the strawberries were cut with a clean knife on a crumb free surface, and the sugar was kept in a sealed container untouched by the flour scoop.)
Strawberries and sugar...a gluten free snack (If the strawberries were cut with a clean knife on a crumb free surface, and the sugar was kept in a sealed container untouched by the flour scoop.) | Source

Life Outside the Gluten Free Bubble

Imagine that you're going along in life, perfectly happy, when WHAM! You begin to have frequent stomach issues. Your health begins declining. You don't know what's going on, or what you're going to do (or how you're going to pay for it all). You go in to doctor after doctor, maybe even a few therapists who talk to you about stress. The only real stress you've got is trying to be well enough to function at work or school.

Then you get a diagnosis. You don't have cancer (Phew!) or any other acute condition. What you've got is a basic intolerance to the things you eat almost every day. You cure your symptoms...but you can't eat wheat.

You don't get a free ride from work or school. You don't get released from life's daily grind just because you have a medical condition affecting what you eat. No one's going to turn their plans upside down, no matter how much they like hanging out with you. You can either learn to live in a bubble (no friends, no work contacts, no social life) or you can learn to manage your symptoms. Which would you choose?

Symptom management doesn't mean pill popping and putting on adult diapers. It means learning how to navigate society while avoiding wheat. While some people are so exhilarated by their new pain-free lifestyle that they don't take risks, others are willing to trust their diet to capable hands. For some lifestyles there is no real option other than trusting their diet to capable hands. Most people don't have the time or energy to do a backflip from their typical pizza or take out chinese food lifestyle to learning how to cook at home. Many people hardly spend any time at home, or share a kitchen in a situation that makes it difficult if not impossible to make 100% of their meals safely all the time.

People with Celiac Disease aren't trying to be difficult when they ask if food is gluten free, or insist on a full rundown of the ingredient list. They are trying to manage their symptoms and take charge of their bodies. Asking questions is an essential way of taking charge. When food is an essential part of living, and has been a large part of your social life for most of your life, it becomes one of the first things you think of when invited somewhere. What will I eat?

Hence the answer to the original question, why are some people with Celiac Disease so paranoid? Because they get hungry. And when they are hungry, they need to know that safe calories are available. The easiest way for them to get safe calories is if there is a platter of crumb free fruit, veggies, and gluten free crackers or chips with dip. Or if they can order off the menu at the restaurant that everyone else in their social group or family is set on visiting. It's easier on the host if the one with special needs stays home, or just brings their own food (unless it's a restaurant where food from home is frowned upon, and sometimes forbidden) but that can be very isolating to the one with restrictions.

Do you think it's okay to ask if a restaurant offers gluten free entrees?

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Why do people with Celiac Disease, or other food allergies, ask for accommodations?

The vast majority of people with special dietary needs who ask for accommodations try to limit their requests to something reasonable. Asking for a plain salad with no croutons sounds like a reasonable restaurant order (And the explanation that even the crumbs from the croutons if they are picked off will cause severe symptoms is an essential portion of this order. Otherwise, harried servers are tempted to just pick the croutons off of a salad that was accidentally garnished instead of taking the time to make a new one.) Asking for a plate of bacon and eggs with no toast is not unreasonable. Asking about gluten free offerings and the level of safety and awareness of the staff regarding gluten free dining is really not unreasonable if you stop to think about it. Especially if it's done when the restaurant is not very busy.

Why do people with Celiac Disease, or other food allergies, ask for unreasonable accommodations?

The most memorable gluten free diners are the ones who make unreasonable requests (like, "Could you just clear the entire kitchen of bread and flour and wipe down all the counters before you cook my meal? And leave it that way just until I leave? Thanks."). Some are just desperate for the life they miss, or the life they wanted for their gluten free child. Some are so wrapped up in their new gluten free lifestyle that they don't realize how unreasonable it sounds to call ahead and ask that the kitchen be sterilized and bread remain unbaked and unprepared until after the gluten free customer has dined. Sometimes there's a misunderstanding, and while they are asking what gluten free options are available the person on the other end of the line thinks they are insisting the restaurant offer gluten free bread and pasta. And sometimes one employee makes a promise over the phone that another, in person, can't keep or doesn't understand how to make happen.

Sometimes people are so excited about their new lifestyle (and symptom free status) that they want to share it with everyone else. They can't understand why everyone wouldn't want to hop on board the gluten free train, leaving bagels and shredded wheat behind. When you've finally found a way out of pain, discomfort and misery, it's hard not to want to rescue everyone else. Some people who are new to Celiac disease forget that gluten isn't necessarily the root of all illness. They also forget that just because they used to suffer doesn't mean others are currently suffering. So, while their requests seem outlandish, it's actually because they forget that some people might still enjoy their forbidden foods and not have any reason or motivation to give them up.

Do They Have to be Paranoid and Obsessed?

What looks like paranoia to you is probably a part of the learning process. Yes, it's frustrating to have someone ask detailed questions about ingredient lists and the preparation process. But, it's a necessary aspect of their new lifestyle. Eventually, they'll learn to be more discrete and probably begin to just go without certain delicacies. But people who are beginning the process or still learning how to navigate social situations are going to end up focusing on the main question, which is 'how do I stay safe and still enjoy myself?' Since Celiac symptoms are caused by food, the answer is to control what foods they eat. And that means asking lots of questions. To the point of seeming obsessed.

How do you Handle the Obsessed Celiac?

When someone asks for the third or fourth time whether their salad was made without croutons and what exact ingredients were used to grill their plain chicken breast, it may sound like they're obsessed. It helps to remind yourself that what looks like paranoia is actually just a plea for recognition and reassurance. People with Celiac Disease or other food allergies want to have their medical condition and their concerns regarding their unique safety needs, validated. They want to feel that they are respected and their needs will be met. Even if you feel like a broken record, sit down with your new gluten free customer and explain your safety precautions. (It helps to have a few in place) Let them know that not only is their food safe, there are measures in place to identify it as a gluten free dish.


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    • Judy Filarecki profile image

      Judy Filarecki 

      3 years ago from SW Arizona and Northern New York

      Great hub. I can see where sometimes I am obsessive when asking about ingredients, but I live in fear everyday of going though 15 to 20 hours of severe pain until I can finally rid my body of the extreme reaction to the offending ingredient.

    • Perspycacious profile image

      Demas W Jasper 

      3 years ago from Today's America and The World Beyond

      for those tending to have migraines, may I suggest what has worked for many: as you feel the migraine coming on, take an Advil and a Feverfew capsule with water. You can find the inexpensive Feverfew in any health store. Try it. Why not?

    • Shyron E Shenko profile image

      Shyron E Shenko 

      3 years ago from Texas

      msviolets, thank you for writing this. It is so hard for people with no allergies to realize that other people are not so fortunate. Yes I have allergies, and migraine triggers and more, not as much as my cousin, she is wise beyond belief, but the knowledge she has is about herself (How an Accident led to a Diagnoses of Cushing's Syndrome), and then there are people like my husband (Countdown to a miracle) who never went to a doctor until 2005 and then it was not for sickness but an accident, which saved his life.

      I don't know much about gluten, so don't try to avoid it.

      This is a wonderful hub.

      Voted-up, UAI and shared.

      Have a blessed day msviolets

    • profile image


      4 years ago

      Thank you for this! I am going to print it off for my daughter to read because she thinks I'm going overboard with the GF diet and I should stop "obsessing" over food. Easy for a person who doesn't have CD to say!

    • Sharicey profile image


      5 years ago from Rhode Island

      I know this is faux pas to say but great hub! I really enjoyed reading it. As someone living with a gluten intolerance I can relate,

    • teaches12345 profile image

      Dianna Mendez 

      5 years ago

      As a person who has to watch for some allergies, I know the importance of avoiding certaint triggers. I have noticed an increase in restaurants offering gluten free choices. That is good! Great post and very educational. Voted up++


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