Whether you have just been diagnosed with celiac disease or gluten sensitivity, suspect you might have either one, or just want to go gluten-free – you probably have a million questions such as what is celiac disease? And what are some of the symptoms? The following information, drawn from personal experience along with various web resources, should help.
Click on a question below to see answers and resources.
If you react to gluten it doesn’t necessarily mean you have celiac disease. You might have a gluten sensitivity. Either way, removing the offending protein from your life can seem like a daunting task, I’m here to assure you that it doesn’t have to be.
What is celiac disease?
Here are various links to websites that describe the disease:
National Foundation for Celiac Awareness (NFCA)
Celiac Disease Foundation (CDF)
What are the symptoms of celiac disease?
Here are various links to websites that describe the typical symptoms. You might be surprised with some of these:
What is gluten?
Gluten is a protein found in wheat, barley, rye, and sometimes oats. Oats can be contaminated with gluten from being grown close to these other grains or processed on the same machines. Look for gluten-free oats to be 100 percent safe. Also be aware that some people who have celiac disease or are gluten intolerant cannot tolerate any oats; the proteins are just too close to gluten.
Most of us know of gluten in the context of making bread; the more kneading that is done to a bread dough, the more gluten that is developed to make it chewy. But any of these grains, in any form, dry or wet, still contain gluten. It’s also important to note that there are other grains, that are derivatives of wheat, like kamut, farro, spelt, triticale, bulgar, durum, and semolina (there are more; read about it here) which also contain gluten. Stay away from them if you are eating gluten-free.
Not only is gluten found in the obvious (and all too common) places such as breads, pasta and baked goods but it can also be lurking in seemingly benign consumables such as salad dressing, soy sauce, restaurant French fries, cereal… even soap and cosmetics!
Do I need to get tested?
It’s very important to get tested first before you stop eating gluten. In the past, doctors associated celiac disease with people who were very thin, people with irritable bowel syndrome/gastric disorders, and children who stopped growing (also known as failure to thrive). Now we are learning there are almost 100 symptoms that can be associated with celiac disease and over 300 autoimmune disorders that can be a result of the disease.
Before you go gluten-free, I would again highly recommend seeing a doctor and getting a test for celiac disease. If you are not consuming gluten in the weeks leading up to your test, it is very difficult to detect celiac disease after the fact. Understand, however, that a blood test is not always accurate.
Why test before you go off of gluten? Personally, I used to believe I couldn’t possibly have celiac disease because I didn’t have severe symptoms. What we are learning now is that there is a spectrum of symptoms and even something called Non Celiac Gluten Sensitivity (NCGS). In this case, the damage from gluten can be just as severe as it is in people with celiac disease.
What if I test negative for celiac disease?
There are plenty of people who test negative for celiac disease but still need to eat gluten-free; the blood test is not always accurate. Get more information about testing here.
Here’s my opinion and my opinion alone; remember I’m a chef, not a doctor. If you aren’t feeling good for any reason and want to try to figure out the source, not just cure the symptom, try omitting gluten from your life. If in 2-4 weeks you notice a difference, there’s a reason. Don’t let the test stop you in trying to take your health into your own hands.
I went to see my own doctor recently and the first thing she said was “so, what’s wrong?” to which I replied “Nothing. I feel great. I just need to get some bloodwork done.” Later she asked “Do you want to get tested for celiac disease?” to which I replied “I have not eaten gluten in almost 5 years. It won’t come up positive.” Are you getting the point?
You do not need gluten to live. In my talks about healthy food I often say the only things we really need are 6 nutrients: water, fat, protein, carbohydrates, vitamins, and minerals. Make these the best quality you can.
Is celiac disease hereditary?
Yes, absolutely. Get more information here.
Does celiac disease affect certain ethnicities?
It seems these days no one is immune from celiac disease. There are some ethnicities in which Celiac disease is common, “…including Scandinavians, Italians, Irish, British, Spaniards, Jews, and Palestinians. It has been estimated that 1 in 300 people in many European countries will eventually develop celiac disease (64). The disease has also been described in populations from South America, Eastern Europe, the Near East, Pakistan, Cuba, and North Africa.”
What does gluten-free mean?
You may choose to be gluten-free because you feel better or have to be gluten-free because of a diagnosis, such as celiac disease. One thing to note is that different people have different tolerance levels. The standard, which will be adopted by the U.S. Food and Drug Administration (FDA) within the next few years, is that in order to have a gluten-free label, foods must test within 20 parts per million (ppm) or less. It’s important to note that some people with celiac disease still react to this amount and some people, who are asymptomatic, don’t react at all. Then there is everyone in between. You may not think that things like ketchup or corn flakes would have to be gluten-free but, believe it or not, gluten can be found in certain vinegars, spices (more from cross contamination), and malt flavoring (malt is a derivative of barley so that’s always the case).
Another hidden place of gluten can be in your fridge if you share condiments like mayonnaise and jelly with others in the household. If your family is using a knife to spread mayo, for example, on their bread and then dipping it back into the mayo…well now that mayo is off limits to you. It’s probably best to keep your own condiments separate or convert the whole family to gluten-free (I say that only half jokingly).
I just found out I have to be gluten-free; what now?
Luckily, living a gluten-free lifestyle has become easier in recent years. First, start with some books. Check my page, Gluten-Free Websites, Blogs & Books for how to begin.
In recent years, there has been an explosion of products. It is a misnomer that eating gluten-free means taste-free. Visit my Gluten-Free Products page for more products. Here’s a general overview.
My two favorite bread brands are Udi’s Gluten-Free and Canyon Bakehouse. Udi’s is a little firmer and great for toast and Canyon Bakehouse is softer and better for sandwiches. Both can be left out on the counter if consumed within a week and will taste better this way than if left in the fridge. For dinner rolls and baguettes, look for Schar brand. For pizza, try Smart Foods (crusts and pizzas) or Against the Grain (theirs comes pre-made with sauce and cheese). The gluten-free baking market has really exploded over the past few years. Fresher is always best but some of my favorite brands are Pamela’s, Udi’s, Glutino, and Schar. For multiple allergens, try Enjoy Life or Lucy’s. My favorite gluten-free pastas are Bionature, Tinkynada, Farmo (available through amazon.com), and DeBoles (especially their lasagna). There are many other products and always new companies coming to the market. If there is a gluten-free expo in your area any time soon, I would highly suggest going to one as it’s a great time to see what is out there (try http://gfafexpo.com or http://echoglutenfreeinfo.blogspot.com/). Check out the blogs on my page as well as my facebook and twitter pages to stay informed.
Many restaurants, grocery stores, food companies and various organizations have hopped on the gluten-free bandwagon in recent years, offering alternatives and support for a population that seems increasingly unable to tolerate this protein. Click here to access a database of gluten-free restaurants, bakeries and grocery stores around the world or here to access restaurants and markets in the U.S. based on your location.
Make sure you read the reviews and understand what each restaurant or food manufacturer is offering. When I see the big black and white “GF” letters indicating it is Gluten Intolerance Group (or GIG) certified, I know they understand testing and the requirements. Some restaurants might say “We serve gluten-free pizza!” but may not take the proper measures to make sure their customers are really safe. You can read reviews that the best way to be sure is to talk to the restaurant manager. If you are suspicious they are not taking the proper precautions, it may not be worth it to risk getting sick. As one celiac I know says “Eating out is risky; be sure to ask the right questions.”
Want to Get More Information About Celiac Disease and Being Gluten-Free?
There is so much information out there but if you feel you need to talk to someone live about the medical side of it, you can contact Nadine Grzeskowiak, the Gluten-free RN. Once you have your diagnosis and need to learn how to cook, contact me about a consultation or you can buy my gluten-free book, The Warm Kitchen.
Also, feel free to click through the pages on this site for more links to various resources, including books, blogs, websites and a handy gluten-free pantry list you can down load using the blue button on the right.