An Allergic Foodie Admits Mistakes

An Allergic Foodie Admits Mistakes

At the risk of losing a few readers who rely on me for gluten-free and allergy-friendly wisdom, today I’m coming clean.


An Allergic Foodie has made some mistakes. Some really, really bad mistakes.

To my defense, that little piece of paper the allergist handed me listing twenty foods that may contain gluten was a joke. Please also keep in mind that in addition to having to eliminate gluten from my diet due to celiac disease, I am also allergic to soy, dairy, corn and a host of other foods and spices. (Like vanilla and nutmeg. Who’s allergic to vanilla and nutmeg?)

Eliminating multiple foods from one’s diet is NOT easy. Especially when you don’t have any nutritional science background (unless you count several attempts at Weight Watchers) and your cooking skills involve opening a box and adding water.

Here are a few of my favorite blunders (I find it fun to sing this line to the tune of “Here are a few of my favorite things”):

I thought “Wheat Free” meant “Gluten Free.”

Yes, I ate several packages of Newman’s Figs before realizing they were full of gluten. I mean if you can’t trust Paul Newman, who can you trust?

An Allergic Foodie Admits Mistakes

I followed the three-second rule: “Those croutons were only on the salad for three seconds!”

Doesn’t matter!  A nanosecond of cross-contamination will make me sprint to the restroom as if my feet were on fire.  By the way, at Outback Steakhouse “Sheilas” means ladies’ restroom–found that out the hard way.

Didn’t know that spelt was gluten.

Spelt Bread is NOT gluten FreeThe week I found out I had celiac disease I bought a big loaf of spelt bread.  After all,  it wasn’t “Wheat Bread” so it must be gluten free.  And it tasted like cardboard,  so it must be gluten free.  Spelt caused me to crawl under my bed for seven days. Not exaggerating.

Didn’t know barley was gluten.

Put this soup on your MOST NOT-WANTED LIST. Do it now.

People with celiac disease should stay away from barley!

I skimmed ingredient lists.

This was back in the days when I thought I could buy foods that contained more than five ingredients. I also hadn’t yet accepted that I needed reading glasses (now I keep a magnifying glass in my pantry!).  I also hadn’t gotten my PhD in nutritional studies. Okay, I still don’t have a PhD, but I think I’m pretty darn smart about food allergies and celiac disease. Read my post What Is This in My Food?Maltodextrin.  Smart, huh?

I was shy in restaurants.

I’m an introvert. I don’t like to make a fuss. I don’ t like to draw attention to myself. These are not good characteristics for someone who eats out a lot and has many special dietary requirements. Here’s how I ordered the first few times I ate out after diagnosis:

“Just bring me a vegetable salad with olive oil and lemon, no bread, no croutons.”

Here’s how I order now:

“I have allergies and celiac disease. So no gluten, wheat, soy, dairy, or corn.  Did you write that down?  Let’s see, I’ll have the burger with no bun, no cheese, and please don’t cook the meat in butter, and use a piece of foil on the grill. And can you make sure the fries aren’t cooked with other fried foods, or in corn or soy oil.  If it says vegetable oil, it may be soy oil.  Read the label. Do you make your catsup in-house? I can’t have corn syrup . . .”  You get the drift.

I paid a “Wellness Coach” $500.

C’mon, who wouldn’t pay $500 to rid themselves of multiple food allergies and celiac disease? After my first appointment, I got home and checked the ingredients of the Miracle Shake that was going to cure my leaky gut.  Contained gluten and vanilla!  I’d been scammed! Any one out there interested in buying a case of  a Miracle Shake that will cure your celiac disease and/or food allergies?  I’ll throw in the box of Magnetic Clay Detox Bath Beads that will also rid your body of evil toxins.  (Note: There are some good wellness coaches out there: just make absolutely sure she/he is qualified and has a background in food allergies and celiac disease.)

I stopped drinking vodka.

Stupid, stupid mistake. People who I called friends told me vodka was made from wheat, not from potatoes as I’d always thought, so I tearfully said goodbye to martinis. But then I read on a reputable website that distilled liquor was okay for celiacs. Hooray! I celebrated with a Cosmo or two or three (I know, Cosmos are so outdated, but I just can’t find a martini I like better. Suggestions?)

People with celiac disease can drink distilled liquor.

A side note: Chopin Vodka is made entirely from potatoes and has become my vodka of choice.  (Okay, so maybe I didn’t give up ALL vodka in those early days).

I’ll stop here because the experts say blog posts should be kept short to retain reader interest. The point to my admitting these early-diagnosis mistakes is this: Learning to live with celiac disease and food allergies takes practice, patience, perseverance and maybe a pair of reading glasses.  But in time, you will become a pro–and you will start feeling good!

If you liked An Allergic Foodie Admits Mistakes, you may like  To Eaters of Everything and  What Restaurants Did Wrong in 2013.

An Allergic Foodie Admits Mistakes originally appeared at Adventures of an Allergic Foodie.

Maltodextrin: What Is It?

What Is This in My Food? Maltodextrin

“Do you know the source of maltodextrin in this chicken?” I asked the guy behind the deli counter.

“Maltodextrin is just sugar, it’s perfectly safe,” he said impatiently.

“But it comes from corn and sometimes wheat. I’m allergic to both.”

He shook his head as if I was speaking a different language, then he assisted the lady next to me.

I didn’t buy the chicken.

Maltodextrin is one of those ingredients that confuses me. Sometime it makes me sick, sometimes it doesn’t.  So today I decided to put on my sleuth hat and do a little investigating.

In terms fit for an allergic foodie who didn’t do well in science class, maltodextrin is simply a food additive produced from a starch. While the name has “malt” in it, maltodextrin does not contain any malt (phew!). It comes in a white powder or a concentrated solution.

What Is This in My Food? Maltodextrin?

What’s important for those of us with allergies, sensitivities and celiac disease to know is this: Maltodextrin is derived from corn, rice, potato starch, wheat, and sometimes barley.  So if you have allergies or sensitivities to any of these, you may react to maltodextrin. I know I sure do! This is why I don’t use Splenda–it contains maltodextrin from corn.

If you have celiac disease, you need to stay away from maltodextrin derived from wheat and barley. This is easier said than done. For instance, the other night my husband was eating barbecue ribs and maltodextrin was listed on the label. According the FDA Regulations, if the maltodextrin contained wheat, wheat should have been included on the ingredient (maltodextrin (wheat)).  It wasn’t. But I still didn’t feel safe because “gluten free” didn’t appear on the packaging either. And since I’m also allergic to corn anyway, I decided not to take a chance on those ribs.

Honestly, unless I’m eating food from a allergy-friendly company, I’ve never seen the source of maltodextrin listed. The reason maltodextrin derived from wheat can be listed as plain old maltodextrin, even though the FDA has labeling rules for the top-8 allergens, is a bit complicated. The Gluten Free Dietitian has a good explanation here.  I’m sure she did better in science class than I did.

Something else to consider: The amount of gluten in maltodextrin is usually less than 20 ppm; this means the FDA allows the food to be labeled gluten-free. For those of us who are super sensitive, 20 ppm is way too much.

So I’m glad I didn’t buy that chicken or bite into those ribs.  Unless the ingredient list identifies the source of maltodextrin, I’m staying away from it.

What Is This in My Food? Maltodextrin first appeared in Adventures of an Allergic Foodie.

Interview with an Allergic Foodie

Food Allergy Blogger Interview: Amy from Adventures of An Allergic Foodie

AmyHappy Friday, everyone! We’ve been pretty blessed to have had some great food allergy advocates on our blog recently, and we’re proud to share with you our latest blog interview with Amy from Adventures of An Allergic Foodie!Amy has been diagnosed with multiple food allergies, and is in the unique position of having developed them later in life. Her blog focuses on living your life to the fullest and not letting food allergies hold you back. Her story is inspiring, and she was kind enough to share some of it in this interview.Kitchology: What was your first encounter with food allergies?

Amy: Well, I kind of have a long history with food allergies; it took me a long time to develop them. I started getting sick in 2003, and got a bunch of different diagnoses from doctors. I was 39 then, and they were saying it was fibroids, endometriosis, all kinds of things! I had a lot of procedures in my 40s, and I’m not sure if the surgeries triggered my celiac and food allergies or if they were symptoms. I wasn’t officially diagnosed with celiac disease until 2008, and after that I was diagnosed with multiple allergies.

I think that the surgeries and my food allergies are linked somehow. I had gall bladder surgery at one point, and the doctors were always saying I had reflux, but after being diagnosed with celiac disease and cutting out gluten, I have no reflux! Also before I was diagnosed with eosinophilic esophagitis, food kept getting stuck in my throat. It was painful– I was choking, couldn’t breathe. But that also turned out to be from food allergies!

I’ve been dealing with a lot of these symptoms since 2008, but once I took wheat out of my diet it all stops.

Kitchology: Well it’s really good that you found out what it was!

Amy: It took a long time! I share the history because I always thought deep down inside my problems were being caused by something else. I felt bad after each surgery, had the same problems I had before, and knew deep down inside it was something else. So I just kept persevering until I figured out what it was.

I think a lot of women get gallbladder disease in their 40s. I remember my doctor once told me to go to a fast food restaurant and eat fried food to see if I would react. I knew I would react! I did do it, and I did get a reaction, but I’m allergic to dairy, gluten and soy, so either way I would have gotten sick. So these problems, they can be food allergy related and you wouldn’t necessarily know.

I always thought you had celiac all your life, but I found out that some things trigger it. I like to share this with other woman because they may think they need a surgery, like gall bladder surgery or a hysterectomy, but it might be celiac disease or food allergies causing similar symptoms. I had all these procedures and surgeries but the gastrointestinal symptoms and the stomach pain continued; no healthcare practitioner ever mentioned celiac disease or food allergies as a possibility.

Kitchology: How have you dealt with being diagnosed with multiple food allergies? What are the biggest changes you’ve had to make?


You know it’s funny, I came across these notes from when I was first diagnosed. I’m allergic to dairy, soy, gluten, I can’t have corn and a lot of other ones, and I was trying to learn the different names for processed foods that would have corn, dairy, etc. So I made these lists of all the different technical names for these food items, and I just recently found them again.

Some people might have one allergy, and that’s difficult, but having all these allergies, and figuring out all the foods, is overwhelming! At first I thought I could eat some processed foods but I eventually realized I had to avoid processed food and go paleo/caveman. That was hard for me because I grew up not being a very good cook. I had kids and was busy.

Honestly, the most positive thing from having food allergies is that I’m now feeding my family better. We’re eating better, buying organic, because of my food allergies. My husband jokes we go to better restaurants because the better restaurants cater to allergies!

The other positive thing is that I am now better able to help others who have food allergies. I just blogged about this; when my son started having stomach pain, right away I knew how to help him with taking gluten out of his diet. My older son has symptoms of dairy or lactose intolerance which have been getting worse and worse, and I knew exactly how to help them. It stinks that they have the allergies, but at least I know what to do about them instead of having to put my sons through tons of tests and surgeries.

Kitchology: What motivated you to start blogging?

Amy: Well I think I started a blog before AA; I did one called allergy free eating, but it was so overwhelming. I started it to figure out what I could eat. The thing is, I’m not really a chef– I’m a pretty good cook but not someone who can develop recipes. So it took me awhile to find my voice, to figure out what I wanted to write about.

With the kids off to college, and the hubby and I starting to travel, I didn’t want my celiac and allergies to hold me back from doing all these things I had planned. I’d finally gotten healthy after being sick for 10 years! So I decided to take a positive approach to celiac and food allergies, and that became the theme of my blog: don’t let celiac disease and food allergies hold you back. I started thinking with that, and hopefully it’ll help people. It’s a great outlook to have, to make the most of it.

When you first blog, it’s for yourself or your family. My first blog was whiny, and so I ended up deleting it. 2 years later, I’m a writer, an author of several new books, and I thought having a blog would be a good launching point to build a platform for a new book. I really wanted to write a book about dealing with food allergies. But now that I’m blogging, I find that I really like it! I’ll probably still pursue the book but I like blogging. There’s more interaction, which I like. I get feedback all the time, and I’m constantly in contact with my readers.

Kitchology: How is your blog doing?

Amy: Good. One thing I try not to think about—and that I figured you were going to ask me about!—is the stats. I just try not to analyze them too much. But I did notice all of a sudden that I’ve been getting more responses. I think it’s because the writing’s become a little more honest, more true to myself. I measure the success of my blog according to how many responses it’s getting. I feel like it’s a more reliable indicator.

Kitchology: Do you have any advice you’d like to offer aspiring bloggers?

Amy: Find your own unique voice. There’s a lot of blogs out there and there can always be more. Everybody knows something different, so find your niche, figure out what you want to write about. Like for me what I wanted to write about more is living life to the fullest with allergies, because I’ve reached that middle aged point and want to enjoy life and didn’t want health issues to hold me back. I want to be a role model for kids dealing with similar issues.

I think about my son, who’s only 20; if he eats a tiny crumb of he’s doubled over, lethargic, in terrible pain. He’s very skinny, and he’s in college right now. When I was in college I drank beer and pizza and had a great time! It’s kind of sad that he can’t do those things, and so I want to be a role model for him and teach him how to make choices. He can’t just get hungry and eat  whatever he wants to eat. Hee’s an audio engineer, and if he’s on set or doing a gig and gets hungry he can’t just go grab something with the guys. When he was in a dorm room he really couldn’t eat; there weren’t a lot of gluten-free options. It’s tough because he’s got a lifetime of living with this, whereas I didn’t get diagnosed until I was in my 40s. So I really want to do the best I can for him.

With my blog, it’s the same thing. I know there are other people out there dealing with the same kind of situation that might not have much of a support group, or someone to push them through and get them to live their lives the way they want to. So that’s what my blog is all about. Once you find out what your blog is about, what message you want to send, blogging will be easy. You just have to find your voice.

Thanks for stopping by! We hope you enjoyed this interview. If you’d like to learn more about Amy, visit her blog at Adventures of An Allergic Foodie.

This interview originally appeared at Kitchology Blog by Jessica Cue

People Who Don’t Have Eating Issues Should Butt Out

On New Year’s Eve, Ox Restaurant, an Argentina steakhouse in Portland, posted an Instagram photo of myriad sticky notes with dietary restrictions. Eater published the photo under the headline This Is Just a Nightmare of Restaurant Customer Allergies.  

Photo from  Ox Restaurant in Portland on Instagram, 12/31/2013

Photo from Ox Restaurant in Portland on Instagram, 12/31/2013

I was all ready to read yet another negative review of customers with food allergies, but that wasn’t the case. What Ox owners Greg and Gabrielle Quiñónez Denton wrote on their Instagram post, and Eater reported, was that the special orders were “nothin’ special.”

Nothin’ special!

Keep in mind, this was a ridiculously busy night–New Year’s Eve! And the restaurant was offering a prix-free menu. Personally, with my myriad allergies and celiac disease, I would never ever expect a restaurant to “redo” a prix-free menu for me on one of the busiest nights of the year. In fact, I called five restaurants weeks before New Year’s Eve to find one that was offering a full menu and then I asked if they could accommodate me.

I’m nice that way. Evidently not everyone in Portland with food issues feels the same way I do. Again I say, Bravo Ox!

Here’s the part that’s gonna make you mad  . . . the comments that followed Eater’s brief article.

Oh where should I start?  Maybe with this one . . .

Comment #1: The percentage of gluten allergies here is about 20%, the reality is about 1.5% in the country. So most of them must be a choice. Next time choose to stay home.

Not sure where this guy got his numbers, but I’ll go to the National Foundation for Celiac Awareness for mine: “One out of every 133 Americans has celiac disease. That’s equivalent to nearly 1% of the U.S. population. However, 95% of people with celiac disease remain undiagnosed or misdiagnosed. This means that up to three million Americans have celiac disease and only about 200,000 know they have the condition.”

Wow. No matter how many times I hear those statistics I’m still astounded, and I’m always left thinking how many people are suffering and not knowing why.  Maybe they’ve figured out they should eliminate gluten from their diet before a doctor told them to.  They made a choice not to eat gluten. Therefore, according to the guy above, they should not dine out.

For so many of us eating gluten is not a choice but a medical necessity. I would like to think many restaurants are glad I choose to spend my hard-earned cash at their establishments.

Comment #2: They should go to the hospital not a restaurant. People that haven’t worked in a restaurant should not eat in one.

I worked at Friendly’s in high school so I guess I’m qualified to eat in a restaurant. What a weird way to think. I haven’t worked in a clothing store, so I guess I shouldn’t shop in one. I haven’t worked in a grocery store, so I guess I shouldn’t buy groceries. I’m just going to stop here.

Comment #3: What’s the most annoying is that most of these are preferences, not allergies.

Huh? More than 170 foods are known to cause allergic reactions. People can be allergic to odd foods like lemon and pepper and lentils; I know people who are allergic to all of these. I happen to be allergic to asparagus and capers and nutmeg. I usually don’t list all my allergies when I order at a restaurant (we’d never get to eat!), but I do request no asparagus because it’s such a common side. I’m sure waitstaff think I just don’t like asparagus, but the reality is asparagus makes me really, really sick.

Comment #4: [They’re] just begging to have their food spit on. The entitlement mentality of modern US diners is just out of control. Stay at home if you have so many stupid allergies, no one really cares.

This person is just heartless and mean. Obviously he/she has never met someone who has gone into anaphylaxis, or had a child double up in pain because he ingested wheat. According to the Centers for Disease Control, there has been a 50% increase in food allergies since the 1990s. If everyone stays home, how will restaurants survive?

Comment #5: I waited tables in the early nineties with a tyrant of a chef; he would not do special orders and if we asked, he would go berserk. I totally understand the side of the customer saying, we’re paying we should get what we want. But then there is the side of the restaurant, one special order per server upsets the whole flow of the kitchen. People take their demands too far these days.

Did you hear that people? You are taking your  food allergies and celiac disease demands too far!  You are upsetting the flow of the kitchen. How dare you!

Final comment from an allergic foodie: People who don’t have eating issues should butt out.

People Who Don’t Have Eating Issues Should Butt Out” originally appeared at Adventures of an Allergic Foodie.

I Couldn’t Swallow! When Food Allergies Cause an Allergic Esophagus

I was eating roasted chicken at a chain restaurant the first time it happened. The meat got stuck somewhere in my esophagus and wouldn’t go down. Water didn’t help; in fact, it worsened the pain. I wasn’t choking and I could breathe, but my throat and chest felt like it was exploding. Tears dripped from my eyes, my face flushed, and I gripped onto the table. My children, then still in high school, looked as scared as I felt. Luckily, after a few very long minutes, the meat finally dislodged.

I blamed the whole incident on reflux since I’d been diagnosed with gastroesophageal reflux disease (GERD) years ago. Or, I thought, it could have something to do with my hiatal hernia, the other diagnosis I got long ago when I reported pain in my chest. When other strange symptoms popped up and tests came back confirming celiac disease and myriad food allergies, I suspected something else might be causing my throat to constrict.

The fourth doctor I saw performed an upper endoscopy and diagnosed eosinophilic esophagitis (EE or EoE). In simple terms, I have an allergic esophagus. Ah ha! I am extremely sensitive to even a tiny bit of soy and the chicken in the chain restaurant was cooked with soy oil. Thinking back, I can now pinpoint what foods I consumed–that I now know I’m allergic to–that caused food to get stuck.


Eosinophil (Photo credit: Wikipedia)

So what exactly is EE? Basically, it’s when the esophagus, the tube connecting the mouth to the stomach, has severely elevated levels of eosinophils, a type of white blood cell. Eosinophils can attack the gastrointestinal system and cause vomiting and difficulty swallowing food. Reviewing my many lab reports over the years, I always had high eosinophils. Hmmm.
Symptoms of EE vary from person to person. Episodes like mine—inability to swallow food or vomit food up– are common. In severe cases, food stays stuck and medical help is needed. Some people may experience heartburn-like symptoms, but the symptoms frequently do not improve with acid blocking medications.

Diagnosis is made through an upper endoscopy. A doctor looks at the esophagus, stomach, and the first part of the small bowel and takes tissue samples (biopsies) to examine under a microscope. An abnormal number of eosinophils indicates EE. Other features of EE include whitish spots, long furrows, corrugated rings, or a lining that looks like crepe paper and is easily torn.

When first diagnosed, I used a steroid inhaler (sprayed into my mouth and swallowed) to reduce the inflammation and reduce the eosinophils. According to research, relapse after treatment occurs in at least 25 percent of patients. Fortunately, by eliminating the foods I react to, my EE has been kept under control.

If you suspect you have an allergic esophagus, make an appointment with a gastroenterologist who has experience in diagnosing EE (it’s a fairly new diagnosis but becoming more and more prevalent).

Here are some other useful resources:

New Allergy Causes Trouble Swallowing – WDBJ7 | @scoopit

Is Fish Good or Bad for Me?

I’ve been at the beach this month eating lots of delicious seafood and fish, enjoying the variety and choices that I don’t get in Colorado. Sea bass with a fresh tomato sauce. An oyster roast on the beach. Peel and eat shrimp for happy hour. Wreck fish cioppino. Grilled halibut with a mango and pineapple chutney.

Nederlands: Plateau van zeevruchten

Nederlands: Plateau van zeevruchten (Photo credit: Wikipedia)

I’m thinking this allergic foodie is eating pretty healthy.

But am I?

An hour on the Web tells me I may not be. One report says fatty, cold water fish (salmon, mackerel, anchovies, sardines, lake trout, and herring) are high in omega-3 fatty acids, making my blood less likely to form the clots that cause heart attacks. That’s a good thing, right?

Well, yes, I might not have a heart attack, but I still might be poisoning my body.  By eating all these fish, I may be consuming contaminants, such as mercury and pollution. According to one report I read from the trusted Mayo Clinic, if I eat a fish with methyl mercury, the toxic could stay in my body for up to a year!

Now that doesn’t sound good.

When I was pregnant with my two sons, I avoided fish that was known to have high mercury levels (tile fish, swordfish, king mackerel, shark, shrimp, canned tuna and cat fish).  But I’ve often wondered if these fish could potentially harm the baby I was carrying, couldn’t they potentially harm me as well–especially since I don’t have the best immune system and have experienced lovely leaky gut?

The other issue that concerns me is farm-raised fish being fed soy and corn–I’m allergic to both! Of course, I always try to order wild fish and meats at restaurants, but I can’t help wondering if I’m truly getting what I order.  According to an article in the Science Daily, we’ve maxed out the ocean fisheries and in order to meet the global demand for fish, aquaculture must grow (i.e., more and more fish will be eating soy, corn and grain).  With demand high and product low, could restaurants sometimes substitute wild fish for farm fish?  Could I be secondhand eating the very foods I diligently avoid?

I happen to really like salmon, and I used to even order farm-raised when there wasn’t wild on the menu. That is until I started reading about the polychlorinated biphenyls (PCBs) found in salmon.  PCBs can raise the risk of cancer.  In 2003, the Environmental Working Group studied farm-raised salmon and found that it is the most PCB contaminated source of protein in the United States.

With celiac disease and food allergies, I’ve already eliminated gluten, dairy, soy, corn and a host of other foods from my diet.  Must I now avoid seafood and fish?

I guess for now, I’ll continue eating only wild fish and in moderation.

But tonight I’m having pizza.

Damn Those Peanut M&M’s!

Those of us with extensive food allergies must have herculean will power.  We politely say “no thanks” to the homemade treats our coworkers offer us.  We shake our heads when the restaurant server asks if we want bread and butter.  We sit patiently while our family members eat appetizers and desserts we haven’t tasted in years.

We do this because we don’t want to get sick.

But every once in a while, temptation gets the better of us.  For me, it was the extra-large bag of Peanut M&M’s I’d bought on sale at Costco for my kids.  I’d safely concealed it in our basement bar’s cabinet, but out of sight didn’t mean out of mind.  And after a particularly stressful day, chocolate became for me what water becomes to a lost hiker in the desert.  And a bar of rice milk chocolate wasn’t going to satisfy my craving–not this time!

So I snuck down to the basement and had just a few M&M’s . . .

Then a few more . . .

Well, since I’m going to get sick anyway . . .

Several handfuls later, I tiptoed back up the stairs, feeling pathetic and weak.   (Listed in the ingredients: dairy, soy, and corn, all of which I’m allergic to.  Rats!)

Three days have gone by and I’m still reacting to those damn Peanut M&M’s: a rash on my chest, unpleasant gastrointestinal ailments, and brain fogginess.  Next time–and I’m sure there will be a next time–I WILL find an allergy-free substitute for my chocolate craving.  I’ve learned my lesson.

But should I err again, I refuse to beat myself up.   Like you, I make daily sacrifices and rarely slip up.  That takes a lot of effort and it’s something to be proud of.