Celiac Awareness Month: Ten Things Everyone Should Know

May is Celiac Awareness Month.

As you may have read, I have celiac disease and I talk (and write) about it a lot. It is a huge part of my life – it controls everything I eat, where I eat it, the medication I can take, and even what sunscreen I can wear. In my many discussions about celiac disease with friends, family, servers, colleagues, grocery store clerks, doctors, nurses, and others, I find that people are usually very interested in knowing more about celiac disease.

So, in the spirit of increasing awareness, I offer my list of ten things everyone should know about celiac disease.

  1. Celiac disease is an autoimmune disease. When people with celiac disease eat gluten it causes an immune response and their immune system attacks and damages their intestines. This damage stops the body from absorbing nutrients properly. Celiac disease is not an allergy or an intolerance to gluten.
  2. Celiac disease is genetic. In order to develop the disease you must have the HLA-DQA1 and HLA-DQB1 genes.
  3. One in every 133 people has celiac disease. Many have the disease and do not know it.
  4. Celiac disease has more than 300 symptoms, affecting many different parts of the body, these can include chronic diarrhea, skin disorders, and infertility. These symptoms often subside after a gluten-free diet is instituted.
  5. Celiac disease diagnoses requires a blood test and biopsy. In order to properly diagnose a person with celiac disease the person should be eating gluten, have a blood test, and a biopsy of the upper intestine. If the blood test and the biopsy are positive the person has celiac disease.
  6. The only treatment for celiac disease is a gluten-free diet. Gluten is a protein found in wheat, rye, and barley.
  7. The intestinal damage caused by celiac disease can heal over time if gluten is eliminated from the person’s life. A person with celiac disease can never safely reintroduce gluten into his or her diet.
  8. Gluten is found in many products other than breads, crackers, and cereal. It can also be found in soy sauce, condiments, juices/smoothies, candy bars, processed foods, ice cream, beauty products, and alcoholic beverages, to name a few.
  9. Food is not gluten-free if it has come in contact with a surface, utensil, or other ingredient that contains gluten. That is called cross contamination and it can make a person with celiac disease sick.
  10. Not everyone on a gluten-free diet has celiac disease. There are many reasons why people may be on a gluten-free diet.

 

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Gluten House Arrest

The gluten drama continues.

You may recall that recently I droned on about how great I feel now that I am gluten-free. All that is still true. No bloat, thin is back, along with more energy. Great. So what can mess that up?

One blood test.

Blood Test

I had my first follow-up antibody test after my diagnosis. Not good. Four months later and my levels are still elevated. Now a non-perfectionist, rational person who did not have expectations built around this test would not have been devastated. That person would not be me. I fully expected to see a within normal range result (0-10). Nope, in four months I am still not “normal.”

My gastroenterologist has a kind and super competent nurse, Tina. She gets me. She knows that I will ask a 100 questions, so before she calls me back she always talks to the doctor so she can give me the best information possible. Love her. After this unfortunately blood test she and I had a chat and she suggested that I remove any gluten from my beauty regime and she scheduled an appointment with my doc in about 30 days. So, me being me, I made a complete and comprehensive list of everything that I come in contact with on a daily basis that could end up in my mouth and ultimately my guts. I called manufacturers (thanks a lot Clinique – I’ll never use you again), read labels, did research and in less than a week my bathroom, laundry room, medicine cabinet, and cleaning products were confirmed gluten-free. Fine. Surely this will help.

Thirty days later I went back to the doctor. He gets me too. He never rushes me, he answers all my questions, and always asks if I have more questions (God bless him). He also is not offended when I mock him. Like when I reminded him that when he diagnosed me he said in response to my reaction “no, this doesn’t suck, you can easily manage this with a gluten-free diet.” Oh, really? He has now conceded that for “most people” it is easily managed. Folks, I am not “most people.” When I have a condition I am always the 1% that has it the worst. I go all out. Thank the Lord none are life-threatening. Not shockingly, we seriously suspect that I am one of those celiac patients that is super sensitive to the smallest amount of gluten. An over-achiever once again.

How do we fix this? The doctor suspects I am eating out too often and that is where I am getting glutened. Who knew that eating out two times a week is a lot? The plan: stop taking all supplements and NO eating out for four months (until the next appointment). Seriously? Is this a joke? Yes, I can stop my supplements and work them back in one at a time to see if one of them is causing a problem even though they are allegedly “gluten-free.” But no eating out? That is too much. Not fair.

I am on gluten house arrest.

For those of you who think I am over-reacting here, stop a minute and think about it. I am single, have an intense need for being social, and I love food. Now, when I meet someone out for a visit I have to run home and eat first or have another KIND bar. I have to cook in bulk so I am never left with nothing to eat. I have to go to the grocery at last twice a week because now the food I have to buy is all perishable (when you are really gluten-free it’s basically a whole foods diet. The boxed and bagged gluten-free food is not good for you and real food rots). Oh, and I now always have a banana, apple, or pear in my purse. Next thing you know I’m going to have tissues stuffed up my shirt sleeves.

The doctor, in reaction to me spewing some version of what I just typed at him, calmly reminded me, as he looked at my evenly spaced and spell checked typed list of all my gluten-free products, that I am “doing everything I can do and I have to live.” He then said, if you have to travel and can’t eat at home just be extra careful and take your Imodium with you. Sage advice.

At the end of this appointment he sent me to have another round of blood work resulting in more bad news. After 30 days of no gluten-free product touching my skin Tina reported that all levels are still up and mostly unchanged. Sigh. She sweetly offered to have the doc call me and listened while I declared that this is “hopeless” and I “am giving up on the titres.” God bless her heart.

It took a couple days, but I have calmed down. My non-perfectionist, rational side has woken up and I realize that I am not killing myself and that this is a process. Not a contest. Having normal titres is just going to take time because, well, I am special. I have to stop looking at it like some sort of goal that if I don’t accomplish I am a failure or loser.

It is just a blood test is my new mantra, or something.

Ultimately, my little rule-following and people-pleasing (including my doctor) self will behave and do as told. So, it looks like the only answer for the next four months is to make my kitchen foodie-worthy, carry-in my dinners to restaurants (classy), and become smug about my super healthy food lifestyle (or not). Maybe my next career with be gluten-free chef . . . talk about unrealistic expectations!

Thank the Lord gluten-free house arrest doesn’t involve some sort of tracking bracelet.

Gluten-Free Dining in Fort Wayne

Gluten-free eating can be pretty easy and very tasty at home. Whole foods do not contain gluten, so eating gluten-free at home is a healthy and naturally low-calorie way to eat. Just whip up a meat and three and you are good to go.

Eating gluten-free outside of your own kitchen can be challenging. The challenges can include the type of cuisine (hello, Italian), the knowledge and understanding of the chef and staff about the dietary restrictions, or your (my) own fear of cross-contamination (you don’t know what happens to your food before you get it). So far in my gluten-free adventure I have encountered uninterested, cynical, and disbelieving servers and restaurant owners. You know, the ones that think you are asking for a gluten-free meal because you are a low-carb weight loss diet (which is fine if you are – just say it and stop claiming you have a disease, allergy, or legitimate intolerance). This is why I have started using the word Celiac as much as possible. I hope to bring at least some awareness to a handful of people.

Anyway, for every one of those people, I run into two or three people who are genuinely interested in making sure I have a positive dining experience. They ask questions, offer suggestions, and take recommendations happily. Below is a list of the places in Fort Wayne where I have enjoyed great gluten-free food and service so far. I plan to share as many as I can find that are worth a share. I hope this helps guide you to the happiest gluten-free places in town.

Acme Bar & Grill – I love the hamburgers at the Acme. So, when I went in recently and asked for one, sans the bun and fries, my server never missed a beat. I had a salad instead of fries and it was a great gluten-free meal. Remember if you are not sure the fries are prepared in a dedicated fryer then they may be contaminated. Booo.

BakerStreet Steak, Seafood, & Spirits – This spot is one of my favorites, it has a great gluten-free menu as well as attentive, caring, and knowledgeable servers. I had a perfectly prepared steak with asparagus, a spinach salad, and a to-die-for flourless chocolate cake. Top notch. Also, if you want to participate in their dining events (they do some farm to fork dinners) then let them know when you make the reservation that you are gluten-free and they will make sure you can participate.

Casa – This Italian eatery has a comprehensive gluten-free menu that will satisfy the biggest, baddest pasta craving! Other than the bread, you would never know that you were eating gluten-free.

Firefly Coffee House – You can get a gluten-free Oregon Chai latte (my favorite) amongst other tasty safe drinks. They serve gluten-free cookies and crustless quiche from their kitchen. The staff is also never too busy to answer a question, show you a product label, or listen to any helpful suggestions. The folks get it. They have also started carrying almond milk in addition to soy for those of us who can’t tolerate lactose.

Friends – They do not have a gluten-free menu but they do have an accommodating kitchen and a flexible menu. Enjoy the chicken souvlaki with potatoes and a great Greek salad (it has pineapple and beets on it – I love it).

Grabill Country Store – Call ahead to this lovely Amish store in the burg of Grabill and they will bake you a loaf of your favorite bread – gluten-free. The Grabill Store also has a large selection of gluten-free flour, mixes, and other fixins. The daily breakfast and lunch buffet has naturally gluten-free options also (eggs and bacon are beautiful things).

J.K. O’Donnell’s – JK’s has outstanding salads that are gluten-free. For those that enjoy a snort every now and again, JK’s offers a gluten-free beer as well as a selection of ciders that are naturally gluten-free.

Madeleine’s Bakehouse – During your next shopping trip to Jefferson Pointe stop into Madeleine’s and enjoy one of their many macaroons and a cup of tea. Both are gluten-free and lovely!

The Oyster Bar – There is no gluten-free menu at The Oyster Bar but the chef is knowledgeable about gluten-free cooking and can whip you up some great fish, gluten-free. There are many things on The Oyster Bar’s expansive menu to enjoy gluten-free, including oysters.

Spice & Herb – Asian food can be tricky in regards to gluten, it is hard to know exactly what thickeners are used and there is typically no gluten-free menu. This is not a concern at Spice & Herb, I had a great lunch of noodles made of mung beans, tea, and salad, all gluten-free. The server was attentive, helpful, and knew exactly what I needed.

There are fast-food joints that offer pretty solid gluten-free options . . . Red Robin has a good gluten-free menu, Chik-fil-a offers gluten-free fries and chicken options (no bun), Culver’s custard in a cup (I only eat vanilla) is gluten-free, Chipotle is accommodating and can make a super gluten-free salad, and in a pinch you can get a bun-less cheeseburger at McDonald’s (although I prefer to go inside as I feel it is harder to mess up my food if you have to look directly at my face).

This diagnosis has been very hard for me – my hobby and great pleasure in life is finding and enjoying good food. I love to eat adventurously and being gluten-free has certainly changed how I can do that now. The days of not thinking about food are over – I have to pre-plan all my meals and carry snacks everywhere I go. But there is hope, in fact, after writing this list I feel a renewed hope that not all of my going-out-to-eat options are lost. That sure is a pretty thought.

Be patient, friendly, kind, and smile a lot and more often than not you will find someone who truly wants to meet your food needs!