Let's talk Celiac Disease & Gluten Intolerance
My name is Carolanne Le Blanc and I manage an online support group Gluten Free for Life along with a local, monthly, support group for people living in Florida, Gluten Free in Florida. I freely admit that I'm an un-diagnosed Celiac. I am a big advocate of taking responsibility for ourselves. I own my disease...it does not own me. Getting diagnosed with Wheat Allergies over 30 years ago was only the beginning in a lifelong journey of understanding and discovery for me.
1. What is Celiac Disease, or Gluten Intolerance, and why should people care about it?
Celiac Disease is an inherited Autoimmune Disorder that affects the digestive process of the small intestine. When a person who has Celiac Disease consumes gluten, a protein found in Wheat, Rye and Barley, the individual’s immune system responds by attacking the small intestine and inhibiting the absorption of important nutrients into the body. Gluten Intolerance, or Non-Celiac Gluten Sensitivity commonly known as NCGS, while it can create many of the same symptoms, does not cause as much damage to the body as the Disease does. It’s important to understand that Celiac Disease and Non-Celiac Gluten Sensitivity are not Allergies. Grain Allergies do exist, but they should not be confused with NCGS or Celiac Disease.
2. Can you put Celiac Disease into perspective for us?
Type 1 Diabetes affects about 3 million people; and the majority of people in the US are very familiar with that. They understand the risks and dangers someone with Diabetes can face. Celiac Disease also affects at least 3 million Americans; and for the most part people in the US remain blissfully unaware of what Celiac Disease is. Statistically Celiac Disease affects 1% of healthy, average Americans. That means at least 3 million people in our country are living and struggling with the Disease every day; and 83% of them are still undiagnosed, still consuming gluten, still experiencing symptoms, still dying from a Disease that can easily be treated by simply changing what we eat. We don’t even have accurate numbers yet for the prevalence of Non-Celiac Gluten Sensitivity in this country but it’s been estimated to affect about 6% of our population!
3. Why is Celiac Disease so difficult to diagnose?
Most Physicians learned during Medical School that Celiac Disease is so rare they would likely never see a patient with symptoms in their entire medical career. When your Doctor was in Medical School, he or she may have heard a single 20 to 30 minute Celiac Disease lecture during their entire 4 years of classes. Medical textbooks still contain outdated information. Additionally, there are over 300 Signs, Complications, Symptoms, and Associated Disorders either directly, or indirectly, resulting from un-treated Celiac Disease. So depending on the stage of malnutrition someone may be experiencing when they finally seek medical treatment, they can present with any number of those associated Symptoms, Signs, Complications, or Associated Disorders.
4. In what ways can gluten damage your health?
If a person has been diagnosed with Celiac Disease it means they must remain 100% Gluten-Free for the rest of their life. Un-treated Celiac Disease; whether consuming gluten deliberately or accidently, means the body is going to be malnourished. The vital nutrients that our bodies need to survive will be missing. Every organ, every process in the body requires the correct vitamins and minerals to develop and function every day. Without those nutrients the body begins to fail and sadly a very slow, painful death is the final result.
5. If a person experiences Non-Celiac Gluten Sensitivity, does that automatically mean they have Celiac Disease?
Not necessarily, it may only mean they can’t tolerate different grains or they may have grain allergies. Something to keep in mind though is that many of the tests used to detect Celiac Disease in this country can often have false-negatives, or even false-positives. And many Physicians use the term Gluten Intolerance because they honestly don’t know what else to call it. Here in the US we’re far behind many other countries in acknowledging what Celiac Disease is and that it’s no longer considered a ‘rare’ disease.
6. What are some foods that have gluten?
Aside from the commonly known Wheat, Rye and Barley, there are over 150 ingredients that contain gluten and are commonly used in a wide variety of products. Generally it’s processed foods. Anything that comes out of a box or can probably has gluten in it. Food prepared in a restaurant or home that does not have a dedicated Gluten-Free kitchen or preparation area probably has gluten in it. Food that’s handled by someone who has not been trained properly about the dangers of untreated Celiac Disease or Non-Celiac Gluten Sensitivity probably has gluten in it. Believe it or not, here in the US, one of the most dangerous places for anyone with Celiac Disease or NCGS is a Hospital or Medical Facility that serves food or dispenses medicine. That’s because many in our Medical Community still believe that Celiac Disease is ‘rare’ and Non-Celiac Gluten Sensitivity is all in our heads.
7. What foods are considered to be gluten-free?
Real foods, real vegetables, real fruits, real proteins are all naturally Gluten-Free. Gluten is a general name for the proteins found in Wheat (Durum, Emmer, Spelt, Farina, Farro, Kamut, and Einkorn), Rye, Barley and Triticale. But there is a vast array of other grains and starches that are all naturally Gluten-Free such as Amaranth, Corn, Millet, Quinoa, Rice, Sorghum, and Teff. Adopting a Gluten-Free Lifestyle generally means going back to basics at first and learning how to eat safely again.
8. Are products required to have the Gluten-Free labeling?
In the US the Food and Drug Administration (FDA) has defined the term “Gluten-Free” for VOLUNTARY use in the labeling of foods. The goal of manufacturing any food labeled Gluten-Free should be for the food to not contain any gluten or to contain the lowest amount possible that is less than 20 ppm gluten. Because the term “Gluten-Free” is VOLUNTARY for use in the labeling of foods the final rule does not specifically require manufacturers to test for the presence of gluten in their starting ingredients or finished foods labeled Gluten-Free provided they have effective quality control tools to ensure that any foods they label Gluten-Free do not contain 20 ppm or more gluten.
9. Can gluten hide in certain foods?
Gluten hides everywhere. The thing to remember is if it can get into the mouth and into the digestive system, it can cause problems. For that reason even things like hand lotions, soaps, lipstick, chap-stick, shampoo; all of those things can cause issues in someone with Celiac Disease or Non-Celiac Gluten Sensitivity. Something as simple as kissing a loved one after they’ve eaten a hamburger, slice of pizza or enjoyed a beer can have dangerous, even deadly, consequences. Sharing a soda straw with a child after they’ve eaten a cookie can make a Celiac extremely ill. Symptoms and side effects of being glutened can range from very mild discomfort all the way to an ambulance ride to the nearest Emergency Room.
10. Can you lose weight by being Gluten-Free?
Going Gluten-Free is not a diet; it’s an entire Lifestyle change. Many with Celiac Disease have a difficult time trying to keep weight on, not lose it. It’s not until they go 100% Gluten-Free that they’re able to add some healthy weight. For others it’s not always been about being over-weight but about inflammation and water retention. For many once they go 100% Gluten-Free they lose weight because that inflammation and water retention can be better controlled. For others it’s the simple move to enjoying real foods and less processed foods that helps them lose weight. For the vast majority of people living a Gluten-Free Lifestyle it’s actually just the change to a healthier way of living that helps them maintain a much healthier weight.
11. Can people eat out if they’re living Gluten-Free?
For people living and coping with Celiac Disease or Non-Celiac Gluten Sensitivity social situations become an active mine field complete with hidden risks, misunderstandings, deliberate ignorance, and occasionally outright bullying. Eating out Celiac Safe will always be a bit of a challenge whether it’s a family gathering at someone’s home, or dinner at a restaurant with friends. For many it involves eating safely at home first…then joining friends and family and not eating anything but simply having a drink and enjoying the company. For others, they accept the risks involved and take responsibility; they work hard to stay safe when out and about in social situations. It doesn’t matter where they go, their first request is for a Gluten-Free menu and when ordering they make certain that others know they want their choices to be Celiac Safe.
12. Where can people find out more about a Gluten-Free Lifestyle?
I always recommend people look for a Support Group. Whether it’s online or in person it’s important that those newly diagnosed have a good support system in place. Families and friends don’t always provide that simply because they don’t always understand what Celiac Disease or Non-Celiac Gluten Sensitivity is. Adopting a Gluten-Free lifestyle can be incredibly overwhelming and it’s important they have others they can talk to. Here in the US it’s rare to find anyone in the medical profession who truly understands. But Support Groups often have a great mix of people who are experienced, knowledgeable and sympathetic to what someone new might be going through. Support Groups are familiar with the complexities of the Disease and they’re an excellent source of experienced help and understanding.
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