Update #4: The Epilogue

Well, readers, it’s been almost two months since my last full-length update on my condition. As I mentioned previously, I did have quite a bit of luck after switching to the Paleo Diet. However, as many short sighted patients do once they start feeling better, I abandoned my “medicinal” diet too quickly. Here’s what happened:

Once I went on the Paleo Diet, I kept a food journal for about a month. This helped me pinpoint nightshades, gluten, vinegar, corn, and canola oil as foods that would provoke hives. I highly recommend keeping a food journal to anyone who’s having symptoms similar to mine. I have a hard enough time keeping track of the nearly 15 different problem foods now that they’ve been identified! Without the food journal, I never would have been able to pinpoint what exactly was making me sick. I know this, because I am once again sick, and I have stopped keeping my food journal.

Fortunately, I don’t have hives. The foods I listed above seem to be the only foods that bring on those devilish itchy bumps. However, those old, familiar symptoms of gastrointestinal distress have creeped back into my daily routine. I haven’t kept my food journal for about 2 weeks now, so I have no way of pinpointing what the issue might be. Because if this, I’ve found myself eliminating foods randomly and without precision. Needless to say, I haven’t gotten any better. I eliminated dairy, which mildly improved my symptoms for a few short days. However, the gastrointestinal distress continued to worsen, until this past weekend when things were nearly as bad as they used to be. I made the decision to go back to the Paleo Diet simply because I was lucky enough to have experienced how much the diet could improve my well-being. So, I went back to what worked.

It’s been a couple of days since the switch back to the Paleo Diet, and I am slowly improving. I believe that I was experiencing something called Gluten Cross-Reactivity. I even wrote a post about it before deciding that it could possibly apply to me. You see, when I went off the Paleo Diet I did so because I wanted to add things like muffins and cookies back into my diet. There are plenty of gluten-free recipes that rely heavily on rice-flour, an easy to find and fairly affordable ingredient. So while I was able to make and eat plenty of muffins and cookies without getting hives, I did have celiac-like reactions to my beloved baked goods. For a couple of weeks, I made 6 rice-based muffins on Sunday so that I would have breakfast for each day of the week. Each day I had a muffin for breakfast, I would get worse and worse. By Thursday, I really couldn’t sit at my desk for very long. After receiving the newest issue of Simply Gluten Free Magazine, which contained an article about Gluten Cross-Reactivity, I had to acknowledge something I had been unwilling to admit: I was reacting to the rice.

There were a few reasons why I didn’t admit this to myself. First, Gluten-Cross Reactivity seems to be a Celiac’s Disease-related syndrome. I have not yet been diagnosed with Celiac’s (because my gastroenterologist can’t see me for 3 months, she’s so busy!), and I suppose I felt it was unlikely that I would actually be diagnosed with a full-blown auto-immune disorder. Second, I just didn’t really want to admit it to myself. I was tired of running my whole life around what I couldn’t eat. My mentality was something like “at the least, I deserve to keep rice. I mean come on, it’s rice. I’m not asking for much, body. Just let me keep rice.” But, my unsympathetic body was unwilling to heed my requests. So, gone is the rice, along with all other grains, dairy, and probably simple sugars. That, and it’s looking more and more like I have full blown Celiac’s Disease. Which is ok, especially since I was able to figure out without years and years and years of suffering. Just 2 years. In relative terms, that’s really not too bad.

Good Luck to Everyone who also struggles with food allergies and temperamental immune symptoms. I hope this blog is a great resource for you or your friends. You’re welcome to message with any questions or comments 🙂

A Guide to Gluten-Free Friends

There are a few things that make me really uncomfortable. I don’t like when my arms are restrained, I cower when I see two people fighting, and I cringe when people make my food restrictions the center of their attention. The uncomfortable “Oh I’m so sorry” and the bashful “well we can eat somewhere else” that my friends invariably sigh when discovering a chosen meal or restaurant is not conducive to my food restrictions provokes that special kind of social anxiety a killjoy might feel when asking to leave a party early. While I understand that these efforts are made out of compassion (and I’m grateful for the sentiment), I think there is a better way for our glutenated friends to be considerate and support us in our food struggles.

I’m writing this guide to help non-food restricted friends handle the eating needs of their gluten-free companions. This post was inspired by the book How to be a Friend to a Friend Who’s Sick by Letty Pogrebin, in which this storied journalist recounts her experiences with breast cancer and the shortcomings and triumphs of those who tried to support her. She dedicates an entire chapter to the bizarre things people say when learning of your ailment, which sharply reminds me of the many times when, upon learning of my new gluten-restrictions, my friends would say some variation of “That sucks. I love bread.” If you were wondering, reminding me of the crumbly, aromatic wonder that is wheat-based bread is not particularly helpful. So here are some tips on how to react to your friends’ and colleagues’ food restrictions. Hopefully, they can provide some insight on our thoughts and fears when it comes to food.

Tip 1: Don’t Make Us the Center of Attention. Think about it: If your friend is newly diagnosed with food allergies or gluten-intolerance (or both), they’ve probably gone through the following experiences recently: First, your friend has experienced the onset of extremely uncomfortable, painful, persistent, and unexplained symptoms. After being tossed from doctor to doctor, your friend has somehow managed to figure out that gluten is a likely culprit. She has then engaged in a radical lifestyle change, in which she has eliminated nearly every food that she’d been accustomed to eating (Pasta, sandwiches, burgers, fried things, cookies, muffins, pancakes…and so on). It’s likely that she’s gone even further than that (as I did), dropping down to an extremely restricted diet to facilitate the healing process. She’ll have become an involuntary recluse due to her ongoing health woes. And when she finally emerges from her solitary apartment, 10lbs lighter but free of symptoms, she’ll want to get back to normal. So if she was the type of person who wouldn’t give you a dining preference unless you twisted her arm before, she certainly will not feel comfortable with being responsible to dictate to her social group which restaurants are safe for her to eat and which will provoke the symptoms that she’s so recently escaped.

My advice is to respect your friend’s approach to the lifestyle. If he/she is comfortable insisting upon which eateries and social events best suit his/her needs, then that’s great. This person has acclimated well and will probably be just fine. If your friend is more self-effacing and inclined to grin-and-bear it when caught in a social setting that’s not conducive to her lifestyle restrictions, don’t insist upon obsequiously apologizing for the situation. We recognize that we would never have thought to accommodate food allergies before getting sick, and we don’t expect anyone else to! When this lifestyle change happens, we learn to manage being hungry, and we learn to always have emergency provisions at hand. So don’t worry, we’ll be just fine. Making a big fuss about it generally just makes us uncomfortable.

Tip 2: Recognize that Dining Out for Gluten-Free Poses a Significant Health Risk. Another important thing to realize is that eating food that we haven’t cooked with our own hands is anxiety producing. Generally, gluten-free eaters slowly accumulate a small list of trusted restaurants over time, only choosing to risk gluten exposure on weekends or days when they can afford to be sick in a worst case scenario. Unless dining at one of our trusted location (and even sometimes when we ARE at one of those sites), we’re fearful and distrustful of the kitchen staff. This might not be fair to the staff, but (frankly) they’re not the ones who pay for their mistakes!

Recognizing this should help you understand a few things about your gluten-free friends. If you’re frustrated that they keep turning down your invitations for social events, this is likely the reason why. Celiacs and other Gluten-Intolerant people frequently become voluntary recluses at first. They fear placing their peers in uncomfortable situations with their inability to eat, and simply choose to forgo social settings in which awkward food-related situations might arise. Think about it…what percentage of social gatherings involve food or drink?

It might be kind of you to let them know that you completely understand their fears and anxieties, and that you would be happy to research restaurants that are conducive to their restrictions. Alternatively, if you find yourself out with a gluten-free friend who simply chooses to eat or drink nothing, don’t feel awkward or guilty for putting him in the situation to watch other people eat. They’re not thinking anything negative towards you or anyone in the group, they simply aren’t comfortable risking it. Perhaps they have an exam or important meeting the next day?

Tip 3: If you want to go above and beyond, educate yourself on what eateries are safe for gluten-free eaters. There are a few valuable resources that gluten-intolerant people and their family use to find social venues that facilitate celiac-safe eating. I’m sure your gluten-free friends would appreciate you efforts to learn a few of these places so they don’t feel obligated to consistently offer restaurant recommendations. Here are a few resources:

The Gluten Intolerant Group Restaurant Awareness Guide: The Gluten Intolerant Group offers a certification for restaurants who go above and beyond to provide safe eating options for gluten-free patrons. Just type your town’s name into the search bar, and all certified restaurants in your area should pop up. Common ones include Outback Steak House and Bonefish Grill (Outback is a particular staple of mine!).

About.com Gluten-Free Reader’s Choice: About.com’s celiac site is full of helpful resources and articles for those who are learning about the gluten-free lifestyle. This is a list of restaurants voted upon by readers who’ve had good experiences at variety of chain locations. Chipotle, Outback, and P.F. Changs are a few that make the cut.

About.com Gluten-Free Registry: This is a user-managed restaurant registry. Users can enter any restaurant that maintains a gluten-free menu. Locations are often rated by those who’ve had good experiences there. This is probably the best resource for amassing a long list of potentially safe places to list, although the ratings and practices of each eaterie are not verifiable.

Tip 4: If you insist on throwing dinner parties or baking birthday cakes for gluten-free friends, you must educate yourself on cross contamination. We have good reason to be so afraid of eating: gluten is everywhere. The protein is naturally found in wheat, rye, and barely, but it sticks relentlessly to surfaces that can easily cross-contaminate your attempts to cook gluten-free. Here are must-know facts about cooking for your friend.

I. Wheat, Barely, and Rye contain gluten. You must not include any of these ingredients in anything you cook for gluten-free friends.

II. Gluten is sticky (like Glue-ten!). It sticks to the inside of toasters, cooking surfaces, sponges, wooden cutting boards and utensils. All of these things must be replaced (and cooking surfaces cleaned well) if you decided to cook or bake for your gluten-free friends. Non-stick Cookware and Bakeware pose a particular challenge if the non-stick coating is scratched, for gluten can seep into the cracks and the pan becomes impossible to clean well enough to ensure absolute safety. To cook or bake for your gluten-free friends, you will either need stainless steel or ceramic cookware (which can be effectively cleaned), or you will need to purchase separate and dedicated non-stick gluten-free cook/bakeware.

III. You need to be aware of your friend’s multiple food allergies. We often come with a veritable collection of food restrictions! (mine are potatoes, corn, gluten, and vinegar so far).

IV. You should probably use a gluten-free baking mix for cakes, breaks, cookies, or anything else. Gluten-free baking is its own quirky science, and you will easily be daunted by the prospects of making something from scratch. Use mixes like Namaste Mixes or Chebe Mixes (found online, at Whole Foods, and at Fresh Market) to eliminate the hassle and ensure a good product.

V. When cooking meals, stick to whole foods. Many food additives are hard to identify as unsafe (Maltose, Maltodextrose, Dextrin, etc), so you’re safest sticking to the meat, fish, poultry, and produce sections of your grocery store when accommodating a gluten-free friend.

I hope this guide helps you to understand the perspective of your gluten-free friends. I’m sure they very much appreciate you reading it! Always remember that, above anything, we’re just afraid of getting sick. If we rudely decline your invitations or your thoughtful baked goods, it’s really not that we don’t appreciate your gestures. It’s because we’re afraid of them 😉 On behalf of your friends, thanks so much for reading!

Update: Elimination Diets

So, about a week after the hives RAGED back into my life, they’re just about gone again. I wanted to take this opportunity to tell you about how I managed to recover (mostly) within a week for others who might be struggling with multiple allergies.

So, as many of you know, I arrived at a gluten-free lifestyle not because of the diarrhea, bloating, brain fog, stomach pain, porous weak finger nails, and poor balance that I had been experiencing for two years, but because of daily, horrific outbreaks of itchy hives. (I’d seen 6 doctors for the aforementioned symptoms over those 2 years, none of which mentioned anything about trying something as simple as a gluten-free diet). So, after pouring about 60 hours of my own time into researching ‘chronic idiopathic urticaria,’ I found some links between my other symptoms and the hives that led me to a gluten-free diet. So, with the consent of my doctor, I tested the diet out. I was cooking mostly whole foods at home (many of which I’ve posted about in this blog), and my hives and digestive woes cleared up. I got so healthy that I could probably pass a sobriety test when sober, a feat I couldn’t have accomplished with ‘brain fog’ and balance problems.

As I continued to grow into my new life style, I enthusiastically tried new brands of gluten-free cookies and breads. As I began to add these processed foods into my diet more and more, the hives came creeping back. I simply figured that I was extremely sensitive to gluten, and that some of the products that I’d been eating had minuscule amounts of gluten despite the company’s best efforts to eliminate the protein. Well, I was wrong. As time went by and I continued to add these products to my diet, the hives got worse and worse. After having a few Udi’s bread sandwiches and tortillas, I made the connection, and cut all processed products from my diet once again. This is when I began to suspect a second allergen. Even with the 100% gluten-free diet and the significant (and persistant) improvement to my digestive woes, the hives came roaring back. After a few days, it dawned on me to look through all of the processed foods that I’d been eating in the days leading up to the revenge of the hives. And what did they have in common? Corn. Corn starch, corn syrup (damn you, Udi’s!), corn meal, and corn. I googled something like “gluten and corn,” and one of the first articles I came upon made the claim that gluten and corn proteins are very similar (according to lab testing), and it would not be unlikely that celiacs might have poor reactions to corn.

Well, as luck would have it, by the time I read that article I’d had (delicious) cornmeal crusted Mahi Mahi for dinner, cornmeal for breakfast the following day, and corn chips and hummus for lunch. Fast forward 1 day, and my skin had errupted in large, itchy welts that covered all of my thighs and spread up to my neck.

The next day was even worse. I’d already cut corn out for a few days at this point, and I was really unsure of how quickly I would recover. In an effort to speed things up as much as possible, I googled a few ways to recover from food allergy reactions. In research leading up to this point, I’d learned that it’s common for people with gluten-intolerances to have multiple food allergies. So, after googing ‘antigenic diets,’ I found myself on the oglioantigenic diet (which is for fairly extreme cases). In this diet, you may eat from a gormet menu that includes:

Apples/Bananas/Pears (at first, you get to pick only 1)

Chicken and/or Lamb (but really, I could never eat lamb)

Potatoes (I cut these out in fear of a nightshade intolerance)

and Rice (I also cut this out in fear of an intolerance).

And that is all. That is 100% of the menu. And I won’t say I was super successful in sticking to it exclusively, but I did a decent job. And a week later, I’m nearly recovered. The Oglioantigenic Diet is a type of Elimination diet specifically designed to help you identify allergens. I would really recommend having a nutritionist supervise your diet if possible, since it’s very low in nutrients.

I just wanted to share the experience with those of you who may feel discouraged for not finding a cure-all in the gluten-free lifestyle. Keep investigating your foods! It’s amazing how what we eat creates who we are 🙂