1. How has your personal struggle with Peripheral Neuropothy given you inspiration?
Alice's personal struggle with Celiac Disease began over 25 years ago with a whole host of symptoms. "My biggest struggle was with recurrent miscarriage. I had a full term still born child and my youngest daughter was born at two pounds. I had lost weight and felt like my body was falling apart. I thought I had cancer and it took me six years to get diagnosed." It was actually her family vet that suggested the problem could be in the grains I was eating.
Since her diagnosis, the gluten-free diet has enabled her to become strong and healthy. "My Peripheral Neuropathy vanished when I started the gluten-free diet. But I do suffer from thyroid disease and I get pretty severe neurological symptoms when exposed to gluten inadvertently."
"My background has prompted me to work hard to ensure that no woman has to go through what I went through and I hope my story can inspire others to be empowered to take their health into their own hands"
2. What are the major accomplishments of National Foundation for Celiac Awareness?
"We’ve had so many accomplishments over the last ten years and I’m so thankful that I’ve had the opportunity to make a difference. Our early mission was to spread awareness of celiac disease to improve diagnosis and we have made strides, advancing the diagnosis rate from 3% to 17% since I founded the organization. We still have work to do, but we have proven tactics that promote the risk factors (family history of Celiac Disease and other autoimmune diseases) and the wide range of symptoms that can be connected to Celiac Disease."
They have also been very committed to the expansion of the gluten-free marketplace. "When I was diagnosed, I had to mail order gluten-free food from Canada. I didn’t think it was right to diagnose people who didn’t have access to their life-saving treatment: the gluten-free diet. Our goal was to double the size of the gluten-free market and we have far exceeded our wildest dreams when it comes to accessibility of gluten-free foods."
3. How have you been able to work with industry partners to make gluten-free more mainstream and accessible for people with Celiac?
"We have tried to make the case that there is a loyal market for those with Celiac Disease and gluten sensitivity and as we work hard to expand diagnosis, this market will only grow. We speak at influential industry conferences to address R&D teams, corporate decisionmakers who are developing tomorrow’s product lines. We also worked with companies like Walmart and Anheuser- Busch from the beginning and both companies are continuing to be committed to their gluten-free customers."
4. What Is the biggest misunderstanding about Celiac Disease?
"I think that there is a misconception that Celiac Disease always presents with tummy trouble. There are actually over 300 signs and symptoms of Celiac Disease and some people may have no symptoms at all. We also see an abundance of misinformation surrounding the gluten-free diet itself. Gluten-free food is not the golden ticket to weight loss or the secret to athletic performance. It’s absolutely critical that the community understand that you must be eating gluten for an accurate test."
5. What are the major warning signs to look for?
"Celiac Disease is referred to as a clinical chameleon because it impacts everyone differently, even within one family. Common symptoms range from weight loss, to anemia to migraine headache. It’s really important to note that it’s vital to get the Celiac Disease blood test before trying the gluten-free diet on your own. Our Symptoms Checklist can be found at DoIHaveCeliac.org. Also, anyone with a first or second degree relative with Celiac Disease should be tested, even if they have no symptoms at all."
6. Even if we don’t have Celiac Disease, what are the health benefits of going gluten-free?
"Anyone who cuts down on the starches they eat and consumes more fruits, vegetables and lean proteins are going to feel better. But that doesn’t have much to do with gluten. There are no demonstrated benefits of replacing gluten-containing foods with gluten-free counterparts. We need more research into this field."
7. What are the major achievements of GREAT Kitchens and GREAT Schools?
"We’ve had great momentum this year with GREAT Kitchens (www.greatGFkitchens.org). We have doubled the amount of learners going through our program, which is great for the community. There is starting to be a real change with the awareness of the food safety needs of those with Celiac Disease.
With GREAT Schools, we just launched new content that expands upon the program by focusing more on the overall nutritional needs of gluten-free students, the responsibilities of colleges and universities under the Americans with Disabilities Act and how to build a Gluten-Free Action Plan to meet those requirements. We are also now working on a Spanish language version of our 100-page training manual."
NFCA focus on Kids has a Kids Central portal (www.CeliacCentral.org/kids) that includes information by kids for kids and also a parenting section.
"We do, provide kitchen training for summer camps to ensure that children with Celiac Disease have access to camp programs that align with their ongoing interests"
9. Still focused on your original goal of diagnosis and moving forward through availability and quality of life, what will NFCA’s next point of focus constitute?
"We are still very committed to improving the diagnosis rate. While we’ve made strides, there is still a very long way to go to ensure that the 83% of those with Celiac Disease who remain diagnosed get an accurate test and are put on a path to wellness. "
"We also must remain diligent when it comes to GREAT Kitchens since we now know that the large majority of people with Celiac Disease experience ongoing intestinal damage from inadvertent gluten exposure. We are committing to support the community to ensure they can eat without fear."
NFCA has also made a commitment to advancing research and we work with hospital partners and other stakeholders to expand the field of research to improve our understanding of Celiac Disease and the needs of those with Celiac Disease and supporting research in developing therapies.
10. What are a few recommendations and tips for some of my Celiac followers on how to move through their daily grind easier?
"Gosh. There are certainly many tips that can help make day-to-day life easier, like carry snacks with you, call ahead when eating out and keep your body strong through diet and exercise. But I think the biggest thing is attitude. Rather than focus on the things you can’t have, try focusing on the many wonderful, beautiful, flavorful and nutritious foods that you can have. Wheat, rye and barley are only three ingredients. Look at what’s left…a world of color, texture and flavor."
11. What can we do to help in your cause of diagnosis?
"Thanks for being our ally in promoting diagnosis…it’s so important to have partners that help us to ensure that the facts about Celiac Disease are rising above the noise of the gluten-free dialogue.
Be sure and check Celiac Disease Symptoms Checklist at www.DoIHaveCeliac.org. You can help us to spread the word that:
a) There are a wide variety of signs and symptoms of celiac disease, not all are based on the gut: anemia, migraine headache, infertility and recurrent miscarriage, among others
b) Family members of those with Celiac Disease and those with autoimmune diseases are at increased risk.
c) Undiagnosed Celiac Disease causes a whole host of problems and can ultimately lead to cancer.
d) Above all, never ever try the gluten-free diet without first being tested for Celiac Disease. Doing so could rob you and your family members of an accurate diagnosis that could ultimately save the life of someone you love.
Remember that NFCA is a nonprofit organization and donations help NFCA to advance our work in promoting diagnosis. Every dollar counts and community support is absolutely essential as we drive our mission to enable our community to live life to the fullest.
Thanks so very much to Alice for taking the time to share valuable information with us. Cheers to you Alice, for your dedication and hard work!