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?
I recently made a post on a particular supplement that cures celiac disease and gluten intolerance. It came on right during celiac awareness day (or at least it just so happened)
I have posted on how I plan to order it should the questions asked and answered be satisfactory: http://wp.me/p1244N-6k
Amy » The only thing that “cures” celiac disease is a gluten-free diet. Praying one day they find what CAUSES Celiac and other auto-immune diseases that attack out bodies so that we can put an end to the increasing numbers of people who get Celiac, Type 1 Diabetes and Graves (thyroid) diseases.
I continue to have concerns about what a label reading Gluten-Free really means — having been misdiagnosed by 10 MDs over a 14 year period (and finally diagnosed by a holistic nutritionist) I remain very skeptical. The FDA hasn’t issued a definition of “Gluten Free” yet – so what standard of identity are manufacturer’s using to state this claim. Does their label mean that it meets the proposed FDA standard of <20 ppm Gluten, or some other, independent standard? What standard? And is the <20 ppm standard based on scientific evidence that that level is safe, and does not cause harm to Celiacs – or is that just a convenient standard for manufacturer's to abide by, which means it's worthless to folks who need to stick to a diet which is truly free of gluten? As for now, until I get some straight answers, I'm sticking to fruits and veggies. Sorry Pebbles.
The above mentioned ‘cure’ for Celiac is based on a 12 month study of 27 people! Sorry, not enough time or people to validate—although don’t we all wish something like this truly could be possible?? Also, agreeing with Lisa Cote who is asking what exactly does that ‘Gluten Free’ on the front of Fruity Pebbles mean? No—none of us wants to deny our kids, but when you have kids who have overt and violent reactions to gluten who have actually gotten sick from many of these mainstream, labeled, ‘Gluten Free’ products, you come to realize that that labeling can mean absolutely nothing. In fact, right now unless the labeling is ‘Certified Gluten Free’, the GF on the front is following the shady and questionable <20ppm recommendation. Which means there more than likely IS gluten in the product, but it might take about a week of daily eating before you get sick. That is —IF you have overt reactions. All Celiac's are different and react differently, and I really think before the FDA and Dr. Fasano come out and say 'X amount of daily gluten is fine' they sure as heck better study a LARGE portion of people to say it succinctly. The truth is—-0 ppm of gluten is safe for a celiac. But for some reason, all the big Celiac national organizations and people like Dr. Fasano want to please the food manufacturers more than the people made sick by gluten.
Tammy—your daughter is adorable!!! How hard–diabetes and celiac
I'm glad you have found a place you guys can be happy and comfortable. Because, honestly, I would let my kids try Fruity Pebbles knowing they would more than likely get sick. And we all have violent, gluten-like reactions to canola oil 
This is why the new 'One Size Fits All' gluten free labeling of <20ppm that I know will get passed is so unfair to so many of us who react to ANY gluten. Our entire family got very ill from Chex cereals, along with others we know. Ore Ida tater tots were another nasty contamination that just about derailed our daughter's 10th grade high school year. Eggs from wheat fed chickens, chickens fed wheat/arsenic feed, grain fed grocery store beef…….the list goes on because Celiac is still so understudied.
@Lisa, I have asked Alice to please respond to your concern. She is very educated in all things gluten-free/celiac (as well as having it herself). I will post it when I receive her response back.
Katie- eggs from wheat-fed chickens? Oh my, I have SO much to learn. I never considered that!! We learn something new everyday. I guess raw fruits and veggies really are going to be the best option. We had her dairy-free for several months to calm her digestive system and still limit it but perhaps I should consider removing it again as cows eat wheat, right? Foods have an amazing power over our bodies, don’t they? How long has your family been gluten-free?