Why had I never heard of Celiac disease before?

Going into my second month of gluten free living, I knew I still had a lot to learn (the curve is about a year on the gluten free diet) but I was up to the task. After all, what choice did I have? I wasn't knowingly going to eat gluten (poison to my system) and just hope that I didn't end up with non-Hodgkin's lymphoma, stomach cancer or the other cancers that Celiac can cause if left untreated. Not everyone who has these cancers has Celiac, but some do. If you know anyone that has (or had) these cancers, please urge them to get tested for Celiac disease. Many cancer specialists in the US are undecided regarding the Celiac/cancer connection so they don't mention it to people who are afflicted with these cancers.

Unfortunately, the US medical community is appallingly undereducated about Celiac disease. I found this hard to digest at first but now that I've lived that truth personally, I'm not in denial anymore. My struggle to get properly diagnosed, proved that the doctors did NOT want to help me find out what was wrong. But they were more than happy to give me a prescription for iron supplements for the anemia...yeah I thought that was crazy too and bought on OTC supplement. Of course, I didn't absorb much of the iron since you can't absorb nutrients properly when you have Celiac and continue to eat gluten.

All of the Celiac Medical Specialists in the US, and in the rest of the world, agree there is proof (a lot of it actually) of a connection between several cancers and untreated Celiac disease. Only a small percentage of the patients with certain types of cancer are affected. If those that do have it but don't know it beat the cancer, and then continue eating gluten - their cancer will probably return again and again until it eventually wins. You see, in this country, there is a lot of money being made to treat cancer, but practically none being made to prevent it. Therefore, there are not a lot people out there shouting from the rooftops that we have a silent epidemic of Celiac disease in this country. After all, 1 in 100 people is a lot of people - that's 1% of our population, or 3 million of us. And that doesn't include the gluten intolerant population...more about them later.

Luckily for me and countless others, a book finally came out that spotlighted this issue. 'Celiac Disease : A Hidden Epidemic' by Dr. Peter H. Green of Columbia University's Celiac Center, was my greatest resource of information on the disease I had. My doctor didn't know much (if anything) about it so I was fortunate when Dr. Green's book hit the shelves in March 2006. If you have Celiac and haven't read this book yet, I suggest you get it. It will answer most all the questions you have, that your own doctor probably can't. I loan my copy out often so try and borrow one if you can't get your own copy. This book is a must read for anyone newly diagnosed, or those who want to know more about the condition they've had for years, and have not gotten much help from their own doctors. Dr. Green does a great job explaining a complicated condition, in easy to understand text. You'll be surprised to find out how many health problems untreated Celiac can cause. Celiac is an auto-immune disease and one of those begets another. But one's chances of avoiding other auto-immune diseases, greatly improve if the Celiac disease is treated with a gluten free diet. There is research being done right now, that might prove Celiac disease is the 'mother' of all auto-immune diseases.

Another interesting fact is that many people with undiagnosed Celiac have many other ailments (not necessarily auto-immune related) that will either go away or get much better, when the person goes on a gluten free diet. I personally know someone who was on 23 prescription medications before her Celiac was discovered. After a lifetime of bad health, she was finally given the answer she'd searched for most of her adult life. She went on the gluten free diet, lost over 100 extra pounds (that Celiac caused her to gain) and was free of most of her meds in the first year. In less than two years, she was completely free of all prescription medications. Keep in mind, she'd been told she'd be on most of them for the rest of her life and she wasn't forty years old yet. Her blood pressure returned to normal, as well as her cholesterol numbers and everything else she'd previously had problems with. Do you know how much money all those meds cost her a month? Now remember that a prescription drug co-pay is much less than the pharmaceutical companies are getting for the drug. That's a lot of money that the drug industry is not getting now, just because one person found out they had Celiac and went on the gluten free diet. I find that very interesting indeed....

To find out more about the campaign to educate US doctors about Celiac, please visit http://digestive.niddk.nih.gov/about/ddnews/spr06/NDDICNewsSpring06.pdf.

I survived my first gluten free month!

I must admit that the first few weeks of my gluten free life were a blur. I had a gluten free mentor of sorts, who helped me immensely. I met her through the local Celiac Support Group and she answered ridiculous questions like 'is canola oil gluten free'?...almost on a daily basis for a month. A million thanks to you Nisla - I'm forever in your debt. By the way, canola oil is gluten free and can be used in place of vegetable oil, in most cases.

So the first week I rid my home of gluten (except husband's cereal and bread, which were now confined to a remote space in the pantry). Cleaning out the fridge and pantry took the entire weekend and even though I had help, neither my husband nor I were expert label readers then. I'm sure we threw out or gave away some items that were in fact gluten free. We found a good home for the unopened products (ALL my canned soups and cornbread mixes for instance) and were shocked to find in the end, we didn't have much left to eat. We thought we were such healthy eaters, but in actuality we had way more processed foods in our home than anyone should. And about 90% of them clearly listed wheat as an ingredient. Luckily, the US labeling law requiring companies to list wheat (in all forms) on labels, went into effect January 1st, 2006....three weeks before my diagnosis of Celiac. Of course, many things in the kitchen were purchased before that date so we used the motto 'when in doubt, leave it out'....or in this case, give it away.

The second week of my new life brought about my first delicate social situation. I had to cancel a lunch with a client. Do you know how odd it is to tell someone (whom you've eaten out with for years) that you don't know how to eat out anymore? Well in case you don't, it's extremely strange and even embarrassing. This particular client knew someone who had a Celiac child and knew how hard it was to learn this new way of living. She told me we could reschedule whenever I was comfortable doing so. Thanks RA...your support on my journey is appreciated more than you know.

Three weeks into my gluten free diet I faced quite a challenge. It was the 20th anniversary of the first date with my husband of 16+ years - Valentine's Day. This day is usually special but this year it would be different since we were venturing out to eat for the first time since my Celiac diagnosis. For the record, I don't recommend taking that plunge on a major holiday. Since I was not going to eat at a chain restaurant with a gluten free menu on this special night, I scrambled to find a gourmet place that could feed me safely. The restaurant I chose had a Chef with a Celiac wife and much of the menu is gluten free without modification (well except the appetizer and dessert courses...those are rarely very gluten free friendly). However, the place is so popular they don't take reservations. No problem....we'd get to the restaurant early (at 6 pm in fact) and we'd have a lovely time....seems I was not the only patron with this idea. When we arrived at 5:55 pm, the hostess quoted us an hour to hour and a half wait. You have got to be kidding me....we were in Buford, GA (over 20 miles north of Atlanta). Where did all these people even come from? It's not normal to go to dinner at 6 pm unless you're over 60, have Celiac, or are very frugal and like to catch the early bird specials. Obviously these folks didn't know it, but there were ruining my anniversary, Valentine's Day and my first gluten free dining out experience. The actual wait turned out to be just over two hours so by the time we sat down I could have eaten the tablecloth.

Lesson learned that night - don't EVER leave home without crackers or some other snack to nibble on in case of a long wait. And better yet, don't go to places when they have such long wait times to be seated, in the first place. Go on Sunday night instead of Friday or Saturday. Both you and the Chef will be happier if you follow this guideline....trust me on this one. If you patronize any the chains that offer gluten free menus, the kinds that don't have real Chefs, this rule still applies - if you want the best experience possible that is.

In the end, we did have a lovely gourmet (and gluten free) meal that first night out. I even ordered some fabulous cheeses for dessert since I didn't want the only other safe option of creme brulee. I ordered the cheese plate sans crackers (again it would have been nice to have my gluten free crackers there) and took most of it home to enjoy the next day. Even though I'd baked my first gluten free cake that afternoon as a surprise for my dessert loving husband, I convinced him to get something sweet to complete his meal. You see, I was curious about how the gluten free vanilla cake I'd made tasted, so I shaved a little piece off before assembling my heart shaped masterpiece. That bite proved my efforts were a waste...the cake had a great look and texture but it tasted like it had a little wheat germ in it. Of course, if did not but the result was the same - it was awful! When we arrived home from our long evening out, my husband insisted he wanted to try the cake that I'd made with love (and crossed fingers). He tasted it...struggled for something positive to say and finally said the frosting was great. We promptly threw the entire thing into the trash can as we didn't think it would be nice to feed to the birds, chipmunks and rabbits that hang out in our back yard. I don't think all the sugar in the icing would have been good for them.

It should be noted that at that time, I was able to buy a national brand of canned frosting that was gluten free. The maker of this product now states that since their ingredients change often, and many times include barley, it might be best for those avoiding gluten to avoid their frosting in a can. If you want a gluten free frosting you don't have to make yourself, I suggest trying Decadent Chocolate frosting from Trader Joe's if you're lucky enough to have a Trader Joe's. If not, check out your local store brands. The most offending ingredient in these products is generally malt made from barley, but the labeling laws do not require barley to be listed. When you see malt on the label, further investigation into the source of the malt is needed before consuming.

The most important thing I did in the first month of being gluten free was contact my local support group (http://www.atlantametroceliacs.com/). Because of that connection, I was lucky enough to see Dr. Cynthia Rudert speak about my condition, only two weeks after my diagnosis. Dr. Rudert is the only nationally recognized Celiac expert in the Southeastern US and she's the only doctor I'd seen to date, that thought there was life after Celiac. I don't want to misquote her but her comment was something like 'It's a great time to be a Celiac'. And you know what? ....she was right!

I have Celiac what?....and by the way, what in the world is gluten?

In January 2005 I complained to my new doctor that I was extremely fatigued and it was affecting my quality of life. She tested my thyroid and when it came back 'normal', she offered me no other help or ideas as to what was wrong with me. Three months later I was getting my skin cancer check up at the dermatologist when I complained of the fatigue problem. That doctor sent me for an iron level test that day, and rushed the results which showed I was severely anemic. I was put on iron supplements and that was the end of it...for my doctor anyway. No one thought it odd that an otherwise healthy 40 year old just became anemic out of the blue...well except for me, of course.

Over the next few months I was subjected to several invasive tests, including several to rule out various cancers. Finally in January 2006, almost a year to the day after I first complained to my doctor that something was wrong with me, I was finally diagnosed with Celiac Disease (1). It should be noted that two of the three doctors I consulted with on my journey told me that the only positive marker for Celiac (of the six panel blood test) was just a 'fluke'. Since I did not have typical intestinal distress symptoms, I could not possibly have Celiac disease. When the doctor (that I manipulated into doing the biopsy) called with the news that I did indeed have it, he told me I could still eat rice, corn and potatoes and hung up...just like that. I was on my own and had to figure out how to live a gluten free life, in a world full of gluten. It's easy for me now but it's an overwhelming task in the beginning, to say the least.

If it weren't for some strangers on a Celiac message board, who explained that not many doctors know how to recognize Celiac disease in this country, I would probably be undiagnosed today. I'm glad I listened to those cyber friends and risked being labeled a hypochondriac by pressing for answers, until I finally got the correct one. But wait...I was lucky enough to be born in the United States of America...so how is it that I have a disease I've never heard of? And it's easily treated with a gluten free diet (no wheat, rye, barley or oats (2)) so why does it take an average of 9 years for a proper diagnosis of Celiac in the US? What I've learned about that is way too disconcerting to ramble on about here, so I'll just say this. There is at present, no prescription drug to treat my condition. I don't mind since I don't want to take a pill (and certainly not three a day) just so I can eat gluten. But if there ever is such a pill (two companies are supposedly working on one) there will be a $10 million ad campaign blasted on every tv station, which will scare the general public at large into thinking they could have Celiac, or at least gluten intolerance. Gotta love those drug companies....lol!

It is my hope that with this blog, I can help others navigate their own gluten free lives, as easily as possible. More to come...

(1) Celiac Disease affects 1 in 100 Americans, 90% of those affected are undiagnosed at present. To find out if you're one of them visit http://www.celiaccentral.org/.

(2) Regular oats are typically contaminated with wheat, which makes them off limits on the gluten free diet. There are several companies that produce safe, gluten free oats and mine come from http://www.glutenfreeoats.com/. These oats are also available at some health food stores and make fantastic oatmeal raisin cookies!