Many people suffer for years and are mis-diagnosed with various other conditions including Chronic Fatigue Syndrome, Lactose Intolerance, Fibromyalgia, IBS, or even Cancer. When no relief comes from the various symptoms, many people look to the Internet and “self-diagnose” by cutting gluten out of their diets. Suddenly they feel fantastic and regain the health that seemed so elusive.

If they feel healthy, then what’s the problem? Perhaps nothing, but there are a few issues at work. First of all if you don’t have a medical diagnosis and there ever is a “cure” for Celiac Disease (other than eliminating gluten from the diet) your insurance won’t pay for it. Schools might not accommodate your child’s dietary needs without a medical diagnosis. Your flexible spending account won’t cover the difference in cost between gluten free and non-gluten free food items without a diagnosis. It also may become difficult at some point down the road to be truly vigilant with your diet if you aren’t 100% sure that you have the condition.

Not only is it important to have a blood test confirming if you have the antibodies, but it needs to be followed up with an endoscopy and biopsy to confirm that the intestinal villi are damaged. The key here is to keep eating gluten until the day you have the endoscopy. If you cut gluten out of your diet too soon and your intestines heal before you have the endoscopy, then you can’t be sure of your diagnosis. As someone desperate to feel better and start healing as soon as possible I too started cutting gluten out of my diet. Luckily my gastroenterologist was well-educated on Celiac disease (surprisingly many are not) and told me to keep eating gluten until the last day. My last gluten filled pizza was from an airport Sbarro (my Italian friends would be ashamed J ) then later I indulged in a big waffle cone filled with ice cream and a piece of cheesecake the night before. I figured why not go out with a bang!

The endoscopy in the morning was not nearly as uncomfortable as I had feared. It was performed in the doctor’s office under light-anesthesia. The doctor uses a scope with a small camera to look at your stomach and intestines and take the biopsy. I had my results right away; I was about to embark on a gluten free roller coaster ride. [on the plus side, the diagnosis meant I didn’t have to follow up with a colonoscopy which I understand is much more uncomfortable] I was lucky my diagnosis happened quickly by Celiac standards, only 3.5 weeks of painful unbearable symptoms. I have heard that most people suffer for an average of 4 years. Hopefully as awareness grows, that number will decrease and we can all start feeling and living well.

(Because I am not a doctor, the content on this blog is intended for informational and entertainment purposes only and should not be considered medical advice – although my father is a lawyer )

A new celiac diagnosis means much more than eliminating bread and pasta made with gluten from your diet. It also means learning to read EVERY label of anything you buy each time you go to the grocery store. A trip to the grocery store takes significantly longer as you juggle the ALLOWED and FORBIDDEN ingredient lists and voraciously read the labels looking for “safe” food. It means learning the difference between maltodextrin (safe in the US unless specified as wheat), modified food starch (potentially from wheat or corn), and natural or artificial flavors. As a diabetic I was already trained to examine the Nutrition Facts outlining fat, protein and carbohydrate content but I had never paid attention to all of the extra stuff in our food.It takes a while to learn the language of the food labels. Start with lists of mainstream gluten free products available from local celiac groups, the Delphi forums or the grocery store (Whole Foods and Trader Joe’s have them, though they aren’t exhaustive). Double check the ingredients; sometimes the lists are out of date. As you slowly start to understand the difference between malt and distilled vinegar, maltodextrin and modified food starch you will become less and less reliant on the lists and the trip to the store will go more quickly. Unless you are like me and just love grocery shopping – then you just end up with more in your cart.

No, it’s not!One of the most confusing parts of being diagnosed with Celiac Sprue is sorting through the myriad of sources of information on the disease. The doctors and nutritionists aren’t really sure what’s ok and what isn’t. Some people with the disease will tell you it’s ok to eat the cheese off the top of a pizza or take the meat off a sandwich made with gluten filled bread. Unfortunately, activities like that will keep your antibodies high and slow your body’s much needed recovery. But how do you know who to trust? I received a list of “forbidden” items from my incredibly capable Gastroenterologist that included “distilled vinegar” “millet” “quinoa” “amaranth” and “teff” – all of which have been deemed safe on a gluten free diet. Then there is the debate about oats. Which ones are safe? Are any safe? What can I do?

In the last two years the public, the medical community and those living with celiac have received more and better information. However, the general US population and restaurant community have little understanding about the seriousness of the condition and the affect that a mere crumb from a crouton can have on someone living with celiac. I was still shocked upon my diagnosis to find that some people refused to ever eat outside of their home. How could I work? I was traveling almost every week for work – was I going to have to give up my job to survive without gluten? What kind of life is it to never be able to eat out with friends or go to a dinner party? Was I going to be trapped in my apartment for the rest of my life? What kind of a life would that be?

Well I knew one thing for sure. I was a problem solver. I was on the math team in junior high. I could figure this out. It took some time, and I am always in search of new products and techniques, but there is a way and you shouldn’t give up.

Since being diagnosed, I have: traveled to Amsterdam to visit my best friend, been to Scotland for 10 days with my beautiful Mom, gone to London for work and play. I have traveled extensively for business and fun: Atlanta, Boston, Los Angeles, San Francisco, and Washington DC to name a few. I have “de-glutened” my own and my mother’s kitchens. I have thrown “gluten free” dinner and dessert parties where some guests had no idea that I had any sort of “allergy.” I hope these tips will help you to relish the beauty of finding a new recipe or discovering a way around the challenge. After all, isn’t life more fun when you have to figure things out?

The first time I heard the terms “celiac” or “gluten” was six months before I ever started feeling sick. My newlywed cousin and her husband were at my apartment for a large dinner party. She asked me what the ingredients were in the chips that I had out as an appetizer. I naturally had no idea. As I saw her digging through the garbage (an activity I have since engaged in at dinner parties myself) I thought, “wow this celiac thing is so much more of a hassle than my diabetes, man am I glad I don’t have that!”Fast forward six months: I am laying in bed after being so sick for a month that I don’t care what I have to do start feeling better. I’ll cut out gluten; I’ll cut out ANYTHING from my diet just to feel some sort of relief.

I received my official diagnosis of Celiac Sprue on November 10, 2004. I immediately made it my goal to find a way to get back to my “normal” life as quickly as possible. My travel schedule for work, my inquisitive, problem solving nature, and a supportive family facilitated a great if not immediate recovery.

I spent the first six months after my diagnosis buying practically every available gluten free alternative to mainstream products. I tested, adjusted and pulled my hair out trying to find recipes or mixes for cupcakes, breads and cookies that tasted as good as their “gluten relatives.” I didn’t rest until I found a way to make it work. Cookies came first, dinner rolls were the most elusive. I decided to start this blog to share what I have learned over the past two years and help the many people who are diagnosed with celiac only to discover that not even their doctor or nutritionist is really sure about all of the details. If no one else reads this that’s ok with me; at least I have one place to find all of my links and recipes!

image: bigstockphoto.com