Today is National Celiac Awareness Day! I was fortunate to speak with Alice Bast, President of the National Foundation for Celiac Awareness, in conjunction with POST Fruity and Coco Pebbles which recently upgraded to a gluten-free status! (If you are a mom of a child with Celiac Disease, you know how exciting that is! If you are not, hold tight…we’ll get there).
Alice was diagnosed with Celiac Disease after 22 doctors told her she was “fine”. She knew she wasn’t fine. She had a still birth, multiple miscarriages, gave birth to a 3 pound baby and had “debilitating physical symptoms and almost unbearable mental and emotional strain.” Her 23rd doctor diagnosed her with Celiac Disease. Alice has since become an advocate for educating people about Celiac Disease and encouraging the safety of those who have been diagnosed. Undiagnosed, Celiac can cause major health issues including cancer. Alice is on a mission to help put an end to those suffering without diagnosis, like she did so many years ago!
If you are unfamiliar with Celiac Disease, here is a text book definition, along with some related stats from CeliacCentral.org:
Celiac disease is an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food.
- One in 133 Americans have celiac disease
- An estimated 3 million Americans across all races, ages and genders suffer from celiac.
- 95% of celiacs are undiagnosed or misdiagnosed with other conditions. (Source: Fasano A, et al. Arch Intern Med. 2003;163:286-292.)
- 6-10 years is the average time a person waits to be correctly diagnosed. (Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center)
- 5-22% of celiac patients have an immediate family member (1st degree relative) who also has celiac.
- Celiac disease can lead to a number of other disorders including infertility, reduced bone density, neurological disorders, some cancers, and other autoimmune diseases.
- There are NO pharmaceutical cures for celiac disease.
- A 100% gluten-free diet is the only existing treatment for celiac today.
Why my interest? Not because eating gluten-free has become the latest trend in dieting; because my daughter was diagnosed with Type 1 Diabetes and a few months later, Celiac Disease. I remember telling my husband, 4 weeks into the life of being a mom of child with Type 1, that I simply could not take on any more and that she COULDN’T have Celiac. She didn’t have symptoms afterall… But of course she DID have it and I started to find all kinds of evidence of their connection. CeliacCentral.org says this:
Normally type 1 diabetes is diagnosed first because this type of diabetes tends to strike early in life and its diagnosis is certain. Also, celiac disease associated with diabetes is usually silent, showing no symptoms, and may only be found upon screening. Signs and symptoms, such as abdominal pain, gas, bloating, malabsorption, weight loss, and abnormal liver function tests may also be seen and easily confused with poor glucose control of type 1 diabetes or gastroparesis – when the muscles in the wall of the stomach do not function normally. Untreated celiac disease may also contribute to irregular blood glucose swings. Unexplained hypoglycemia, or low blood sugar, can be a sign of malabsorption related to celiac disease and should be investigated, particularly in small children. Both celiac disease and diabetes require dietary modifications for proper management, so the control or elimination of certain foods will keep the individual with either disease healthy.
Now that we’ve learned what she may eat or not, we still struggle with giving her proper food options. There is hidden gluten in so many foods, anything not labeled specifically gluten-free requires major investigation of ingredients and phone calls to manufacturers if their website is unclear. Even then, contamination is a major risk. For example, when we buy butter, we buy 2. One is labeled “GF” and is ONLY to be used with gluten-free products and a clean knife. If I were to use a knife to spread butter on non-gluten-free bread then dip the knife into the GF butter, the butter would be contaminated and would make my daughter sick. Yes, that small of contamination can make her tummy cramp and hurt. Damage is being done. It’s scary. I wash my hands ALOT and whenever possible, the entire family eats gluten-free.
Which brings me back to today. National Celiac Awareness Day. In celebration, my entire family has committed to eating g-free all day. It’s not that big of an impact on me as I eat g-free 85% of the time but for my son, it’s a huge sacrifice and his sister does appreciate that!
There are two reasons I share with you today:
Number one, I don’t want you, or anyone in your family to go undiagnosed. There are over 200 symptoms related to Celiac Disease. Not all of them are related to digestion and tummy. I was checked because I get migraines. My son was checked because we wanted to be sure (it’s genetic and we still don’t know which relative it was passed down by). I have friends who suffer from multiple miscarriages or infertility (do you? Maybe you should be checked for Celiac and change your diet to g-free!) that I will be encouraging to get the test done.
For a full list of symptoms, visit CeliacCentral.org. If you have a family member with Celiac, you and your entire crew should be tested. It’s a simple lab test. (***It is important to continue eating a normal, gluten-containing diet before being tested for celiac. If the blood tests and symptoms indicate celiac, a physician may suggest a biopsy of the lining of the small intestine to confirm the diagnosis.) Even with our negative diagnosis, it’s important to be screened down the road should any symptoms arise. Here is a symptoms check list for your information.
The second reason I share is because I want to say thank you to all the food brands and restaurants who are making a truly gluten-free diet (no contamination) easier! With proper labeling of “this product contains gluten” or “gluten-free”, my mind is put at ease and my shopping time is drastically reduced!
POST Fruity Pebbles and Coco Pebbles cereal and treats are the newest foods to the mainstream market that are gluten-free. I told you in the beginning how happy it made us to find this g-free option, now let me elaborate. When you have a child, you don’t want to deny them, make them feel different. You want to shelter them and protect them from feeling “different”. Food is a very emotional topic with my daughter. She is denied…a lot. Not only with foods containing gluten but with foods containing carbs. If she is hungry but it’s not mealtime and her blood sugar is not low, her snack options are limited to protein choices. For a child, that’s tough. At least at mealtime, we can offer her some of the mainstream foods like Fruity Pebbles. She feels good when we can buy g-free at the regular grocery store and I feel good saving some money (gluten-free food is very expensive, especially at health food stores). We know that a diet of lean meats, fruits and veggies is ideal but you can’t ask a 6 year old to eat like that every meal, every day. So, THANK YOU Post for making the effort to provide us a g-free option. We so appreciate it!
Thank you to Alice for taking the time to speak with me today! Please check out the CeliacCentral.org website. They really are acting progressively to educate the general public, medical professionals and restaurants how to keep those with Celiac Disease safe. If you have a question about Celiac, they have an answer. It’s an awesome resource!
I Am Celiac Free (for now, my body’s response to gluten was fine but with any auto-immune disease, that can change!). Are you?