Press Release: Much Needed Support for Celiac Patients to Reach Nationwide

Kimberly NCA Blog, News

FOR IMMEDIATE RELEASE

 

 

 

 

 

Much Needed Support for Celiac Patients to Reach Nationwide

Non-profit’s education and advocacy for celiac sufferers grow to include entire U.S.

Boston, MA (06/14/17) – The National Celiac Association is dedicated to the mission of educating, advocating, and outreach for individuals with celiac disease (CD) and non-celiac gluten sensitivity (NCGS), their families and communities. With the recent acquisition of the Celiac Support Association (CSA), the New England Celiac Organization (NECO) with offices in Boston, Massachusetts and Nebraska is launching a national platform and renaming the organization the National Celiac Association (NCA). With the new growth, the NCA will now be able to offer its services across the nation.

Someone with celiac disease must be on a life long gluten-free diet. Omitting wheat, barley and rye is mandatory for this autoimmune disease. CD as well as NCGS continues to be a mystery to many, often confused with a dietary choice to avoid foods containing gluten. However those undiagnosed with CD can experience a variety of symptoms such as gas, bloating, diarrhea, vomiting, pain, fatigue, and infertility.

The newly founded NCA will continue the former CSA’s Gluten-Free Certification Program that offers a seal of recognition. Recognition Seal products are tested using the most sensitive ELISA and other relevant validated tests available in the United States; the lowest level of testing in the nation at 5 parts per million. Last but not least, CSA’s members will also continue to be an integral aspect of the association.

One of the NCA’s immediate objectives will be to further develop the Gluten-Free Food Bank, created last year as a pilot program in Massachusetts. The food bank aims to supplement food assistance programs with gluten-free options, addressing the problem of those diagnosed with CD and NCGS who may not have the resources to purchase gluten-free food that can be quite costly. The program is supported by generous donations from gluten-free food companies and monetary donations that allow NCA to purchase and deliver gluten-free foods to food pantries. In less than one year, the program delivered over 2,500 pounds of gluten-free food to those in need.

“Our grass-roots approach hasn’t changed in the 24 years we have been serving the community. Wherever you may reside, you matter to us and we are here to help you!” says Executive Director Lee Graham who has been leading the transition from NECO to NCA.

The member-based group also offers support for those with CD and NCGS through monthly e-newsletters, an informational website, and the Gluten-Free Nation magazine. More than 70 support groups and former CSA chapters are currently in the process of joining the NCA team, and NCA is welcoming even more. Additionally, NCA collaborates with Harvard Medical School’s Celiac Research Program for a yearly Celiac Conference in Boston, MA where the association is headquartered amongst several world-renown celiac centers.

About the National Celiac Association:
The National Celiac Association is a 501(c)(3) non-profit organization dedicated to educating and advocating for individuals with celiac disease and non-celiac gluten sensitivities, their families, and communities throughout the U.S. NCA provides education, awareness, and outreach for persons with CD and NCGS and the medical community through in-person events and the online community.

“The National Celiac Association is a leading support group nationwide in providing cutting edge information, organizing events for patients and families and in networking with academic celiac centers in order to provide the best support possible to the celiac community.”
Dr. Alessio Fasano, Medical Director, Center for Celiac Research at Harvard Medical School and Chief, Division of Pediatric Gastroenterology and Nutrition at Massachusetts General Hospital.
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MEDIA CONTACTS:

Barbara McFadden
McFadden/Gavender
O: (520) 882-6262
M: (520) 990-6040
barbara@mcfaddengavender.com

Taylor Bentall
McFadden/Gavender
O: (520) 882-6262
M: (603) 801-9398
taylor@mcfaddengavender.com

Website
www.NationalCeliac.org

June 2017 NCA News

Kimberly NCA Blog

NCA NEWS

Monthly e-newsletter serving the celiac and gluten-free community

Welcome to the National Celiac Association (NCA) monthly e-newsletter. Sent out the first week of each month, this e-newsletter contains up-to-date information about product recalls, scientific updates, recipes, events and more! We hope that you find this montly e-newsletter to be valuable, and welcome your input for future issues.

Yours in health,
Lee Graham, Executive Director

Who or what is NCA?

CSA members voted to dissolve the organization and transfer most of its assets to National Celiac Association (NCA), formerly known as New England Celiac Organization (or NECO). The National Celiac Association remains dedicated to the mission of supporting, educating and advocating for individuals with celiac disease, their families and communities across the nation. Our grass roots approach hasn’t changed in the 24 years we have been in business. Wherever you may reside, you matter to us and we are here to help you!

Gluten-Free Foodbank Update

  • The Gluten-Free Foodbank (GFFB) is a pilot program started in Eastern Massachusetts which provides gluten-free food assistance to individuals who have a medical need for gluten-free food but who struggle to afford the diet. Learn more about the GFFB here.

A recent survey conducted by the GFFB found that while the known number of gluten-free individuals seeking food assistance is generally low, few food pantries actively seek to identify specific dietary needs of clients. Therefore, individuals with a medical requirement for gluten-free food could go unrecognized.

Many food pantries ‘keep back’ supplies of specialized gluten-free products for those with a specific need, but at the same time lack a process for identifying who those people are. This means that even when available, gluten-free products are often not obvious enough to prompt those with a need to ask for them.

The possibility that clients requiring gluten-free food assistance are being “missed’ by food pantries is particularly concerning for two reasons. Firstly, the high cost of gluten-free food places an additional financial strain on households who have this medical dietary need, meaning they are even more in need of assistance. Secondly, it is possible that the combination of the high cost of gluten-free food and the lack of awareness of gluten-free food assistance could lead to non-compliance with the diet, potentially with damaging health effects.

As a result of this survey, The Gluten-Free Food Bank is asking that all food pantries directly ask clients whether they have any specific dietary needs, such as a medical need to eat gluten-free. Furthermore, GFFB suggests that the availability of gluten-free food assistance is promoted more strongly so that those in need know to request GF products.

Events

membership-neco

Visit the event calendar on our website to see what events are happening in your part of the country. Know about an event that we don’t have on the calendar? Please let us know so we can share it with others!

 

GF Dining Out

membership-neco

Did you know that we maintain a directory of restaurants where you may be able to dine out safely? Help us to expand the directory by adding your favorite GF friendly restaurant here.

Remember you are your own best advocate and must take care to ensure that the kitchen staff understands your needs. NCA members, you may wish to log in to the member area of the website to review the Dining Out Information.

 

Celiac Disease and Gluten-Free in the News

Webinars and Podcasts

Beyond Celiac has Celiac Straight Talk podcasts titled the Elusive Celiac Disease Diagnosis and Cheaters: Walking Away from the Gluten-Free Diet.

Canadian Celiac Association is hosting a webinar titled Understanding Gluten Labelling in Canada on May 17th. Click here for more information or to register.

The Celiac Project has some new podcasts which you can listen to.

Product Recalls

Hail Merry issued a voluntary recall on their Meyer Lemon Mini Miracle Tart Party Pack of 6 due to a labeling error.

The products do contain cashews as listed on the “Ingredients” label, however the “Contains” allergen statement does not specifically identify “Cashews.” People who have an allergy to cashews run the risk of serious or life-threatening allergic reaction if they do not read both the “Ingredients” and “Contains” statements and then consume the products.

Consumers who have purchased these products are urged to return them to the place of purchase for a full refund. For further information, see the FDA recall. Contact Hail Merry at 214.905.5005 x115 or by email with any concerns about this recall.

Wang Globalnet has recalled fish cake, fish ball and fish tofu due to possible undeclared wheat and egg. For further information, see the FDA recall.

Quality Nut Company of Masillion, OH issued a voluntary recall on certain products due to undeclared allergens. The Sweet and Spicy mix in 2 oz bags contained undeclared wheat. Read the FDA recall notice or contact Quality Nut at 330-327-6161 for more information.

Italian Gluten Free Food has issued an allergy alert on Chef Luca’s Lasagna Al Forno-Baked Cheese Lasagna due to undeclared egg. See the FDA recall for more information, including lot numbers and expiration dates of affected product.

Saffron Road Beef Chile Colorado frozen meals have been recalled due to misbranding and containing an undeclared allergen. Products with a Best By date of 05/23/18 may contain cheese enchiladas, which contain milk, instead of Beef Chile Colorado, which does not list milk as an ingredient. Click here for more information.

Kroger issued this product announcement regarding Oberlander Gluten-Free Bakery’s Chocolate Kokosh Cake which may contain undeclared almonds. Contact Oberlander Baking Company at 973-844-9994 with any questions or concerns.


Recipe of the Month

Getting ready to cook? Snap a few photos of your recipe in process or the final yummy result, and submit them to be added to our website!

Iced Tea
Not hard to make and better than store-bought!

Get the Recipe!

Book Giveaway

Congratulations to Marsha from Apex, NC, who won the May giveaway, a copy of a copy of Gluten-Free The Definitive Resource Guide by Shelley Case, Dietitian.

This month, you can win a copy of Gluten-Free Celebrations Memorable Meals without Wheat by Carol Fenster, PhD.

To enter, simply send us an email with your name and mailing address by June 17.

Our Sponsors

Interested in becoming a sponsor of NECO? Click here

May NCA News

Kimberly eNewsletters, NCA Blog

NCA NEWS

Monthly e-newsletter serving the celiac and gluten-free community

May is celiac awareness month, and we wish you health and well-being. To help celebrate, please support celiac research through an internship. Emma Clerx has been accepted again for a 12-week summer internship program at BIDMC’s celiac research center under Dr. Dan Leffler. You supported Emma Clerx last year, and we were all impressed with her work and growth.

Let us encourage her by continuing to pave the way for celiac scientists in the future. Please help us support this important stage in Emma’s goal to be a celiac research scientist.

We are overwhelmed by the positive feedback following the Celiac Symposium and extremely grateful to Boston Children’s Hospital, the Celiac Center at Beth Israel Deaconess Medical Center and the Center for Celiac Research and Treatment at Massachusetts General Hospital for helping to provide expertise and a slate of national experts. Learn more below.

Yours in health,
Lee Graham, Executive Director

2017 Celiac Symposium

The speaker slides from the 2017 Celiac Symposium, Medical Myths and Milestones, held on April 1 are available on our website.

Questions and Answers from the following are posted also on our website.

Support Celiac Research

To help celebrate celiac awareness month, please support celiac research through an internship. Emma Clerx has been accepted again for a 12-week summer internship program at BIDMC’s celiac research center under Dr. Dan Leffler. You supported Emma Clerx last year, and we were all impressed with her work and growth.

Let us encourage her by continuing to pave the way for celiac scientists in the future. Please help us support this important stage in Emma’s goal to be a celiac research scientist. Click here to donate.

Volunteer Opportunities

The Gluten-Free foodbank is looking for a volunteer who is able to drive a 16′ refrigerated box truck. No special license is necessary, but weekday availability is important. Please contact GFFB Director Nicola if you can help.

Camp Celiac is a week long, overnight, entirely gluten-free camp for children ages 8-16. Camp week is August 6-11, 2017. Camp Celiac has three nurse volunteers and is looking for a fourth to learn this year and then return for at least 2 more years. Camp Celiac would like to talk to a Registered Nurse, a recent nursing graduate, or Junior/Senior nursing student looking for experience. Please email Denise at denise@campceliac.org.

Monthly Group Meetings

membership-necoMonthly group meetings provide the opportunity to talk about managing celiac disease and living gluten-free. There are no set agendas, pre-registration is not required and there is no charge to attend. Just drop in!

Visit our Monthly Group Meeting event page for the full schedule and location of each meeting. Contact the group leader if you have questions about any of the group meetings. Here is the schedule for the upcoming meetings:

The Boston area meeting is on hold. Should you have any questions or wish to meet with a group leader, please contact Lauren or Charlotte.

Other Upcoming Events

The NCA Advisory Board will meet on May 22nd and June 19 at 7:30pm. Contact Lee if you would like to attend or would like more information about what happens during these insightful and spirited evening meetings.

  • Chef Shilpi, of EZ Compliments, is running many gluten-free Indian cooking classes. Mention that you are a NCA member to get a $10 discount on registration.

The next Gluten-Free North End Market Tour will take place on Saturday May 13.

  • Register through Newton Community Ed for Gluten-Free Cooking Classes such as Lovin’ Lemon and Bagels and Bread.
  • Join Chef Oonagh for Friday night Fun Cooking classes, meeting on May 5 and 12 at Nashua Community College. Register with Jon Mason at NCC by email or phone or email Chef Oonagh with questions.
  • A screening of What’s With Wheat followed by a live Q&A with Cyndi O’Meara, Dr. Stephanie Seneff and Alessio Fasano, MD, will take place at the Somerville Theatre on June 5.  Click here for more information or to purchase tickets. Other screenings and Q&A sessions will be held in New York, Chicago and Los Angeles.

Celiac Disease and Gluten-Free in the News

Dining Out Suggestions

The third Wednesday Natick group suggests the following restaurants for gluten-free dining out:

Seaside Pub, Hyannis
Chatham Fish Market, Chatham
Scargo Cafe, Dennis
Woodman’s of Essex
 
 
 

Recipe of the Month

Getting ready to cook? Snap a few photos of your recipe in process or the final yummy result, and submit them to be added to our website!

Moroccan Spicy Mustard Chicken
Add peas, diced carrots or chopped spinach to turn this into a one-pot meal.

Get the Recipe!

NCA Giveaway

Congratulations to Ida from Enfield, CT, who won the April giveaway, a copy of The Best Ever Wheat-and Gluten-Free Baking Book by Mary Ann and Mace Wenniger.

This month, you can win a copy of Gluten-Free The Definitive Resource Guide by Shelley Case, Dietitian.

To enter, simply send us an email with your name and mailing address by May 19.

Our Sponsors

Interested in becoming a sponsor of NCA? Click here

 

Symposium Q&A from Daniel Leffler, MD, MS

Kimberly NCA Blog

Q. How do you differentiate between a “Super sensitive” celiac and refractory celiac? Are there treatment options for either?

A. Many people believe that type 1 refractory celiac disease occurs when people are so highly sensitive that there is no feasible way to be sufficiently gluten-free. There is no clinical way to differentiate these conditions, if they are indeed separate, so at this time both are treated mostly with budesonide (a steroid with low systemic absorption).

Q. When diagnosed I was told not to drink “gluten removed” beer. With KumaMax, would that change?

Is KumaMax only for very small cross contamination? Can it break down anything other than gluten?

A. We don’t really know how potent KumaMax will be at degrading gluten, but given the published literature, it seems to be very effective and may allow for a gram or more of gluten to be eaten safely, such as a bottle of regular beer. This would allow for consumption of most low-gluten foods without toxicity. As far as we know, KumaMax only breaks down gluten, not other food proteins.

Q. Do you foresee a way for successful new therapies to prevent symptoms of gluten ingestion during a gluten challenge (so those challenged are less sick)?

A. Yes, I think any successful therapy for celiac disease should be able to prevent symptoms during gluten challenge. This was shown with both larazotide and ALV003 in separate gluten challenge studies. Larazotide was able to prevent symptoms and elevation in tTG with gluten challenge, and ALV003 was able to prevent damage to the small intestine.

Q. What are the risks involved in being part of a research study for celiac patients who will need to ingest gluten? Will it increase chances for comorbidities?

A. I think is worth remembering that before we had good blood tests for celiac disease, gluten challenge was part of the diagnosis of ALL patients with celiac disease, including children, and that these gluten challenges often went on for months. These generations of patients all did fine, so this gives us great confidence that the 2-6 week gluten challenges used in research are indeed safe.

Q. What is the timeline for Larazotide or any of the other intraluminal (in the cavity of the small intestine) therapies?

A. This is always difficult to predict, but if larazotide is successful in its upcoming study, it could be available in 2-3 years. Everything else is likely to be 5 years later than that.

Q. Does the Nexvax vaccine also cause intestinal damage as it induces symptoms?

A. This is currently unknown but will be looked at in their upcoming phase 2 study.

Symposium Q&A from Wendie Trubow, MD

Kimberly NCA Blog

Q. If you have anxiety and following a strict GF diet, is there anything you can do to get off your antidepressant?

A. We would recommend that you first speak with your primary physician or gastroenterologist for advice. Some patients also seek guidance from a functional medicine physician.

Symposium Q&A from Jocelyn Silvester, MD, PhD

Kimberly NCA Blog

Jocelyn Silvester, MD, PhD

Q. I have read that people on a gluten-free diet have more arsenic in their urine and mercury in their blood. Can you speak about this?

A. Rice absorbs and concentrates arsenic and mercury in soil. People with celiac disease tend to eat more rice than those who also eat gluten-containing grains, and, thus, are at risk for increased heavy metal exposure. The levels depend on the soil where the rice is grown. In the US, rice from California has lower levels of arsenic than further east where rice is grown in former cotton fields which were heavily fertilized. White rice has lower levels of heavy metals than brown rice and some companies publish results from testing their rice.

Symposium Q&A from Debbie Mitchell, MD

Kimberly NCA Blog

Here are the Questions and Answers from Debbie Mitchell, MD.

Q: Is it possible to have hypothyroidism without having elevated TSH? Is the TSH screening the end of testing or can other tests confirm hypothyroidism, such as full symptoms and family history of Hashimotos?

A. TSH is the most reliable test for primary hypothyroidism (meaning that the problem is that the thyroid is not working properly) as it reflects your own hypothalamus and pituitary gland’s impression of how much thyroid hormone is available in the body. In very rare circumstances, the pituitary gland is unable to make TSH properly – this is called central hypothyroidism. Central hypothyroidism is most commonly seen in the setting of congenital brain malformations, or a history of brain surgery or brain radiation, though can be seen in other conditions as well. In this setting, the TSH could be misleading.

Q. What is the best way to asses one’s risk of developing Type 1 diabetes?

A. In general clinical practice, we can assess someone’s risk by evaluating their family history and their own personal history of other autoimmune diseases. There are also ongoing research studies evaluating risk factors for diabetes – in some of these studies, antibodies against the pancreas are measured which can refine that risk estimate. If you have a family history of type 1 diabetes, I encourage you to consider enrolling in TrialNet (www.trialnet.org).

Q. How late in life can someone be diagnosed with type 1 diabetes?

A. There is no upper limit to the age at which someone can be diagnosed with type 1 diabetes, though it becomes increasingly rare with age and is fairly unusual (though definitely not impossible!) after age 45.

Q. Is there a risk of women’s heart disease and calcium supplementation?

A. Great question and one that clinical researchers are hotly debating! A few studies have suggested that there may be an increased risk, but many other studies have not found an increase in risk. The studies that have been done at this point were not primarily designed to look at heart disease, so more research definitely needs to be done. At least some studies have suggested that calcium through the diet (such as from dairy, tofu with calcium, etc.) may be safer than supplements. And with calcium – you should get enough, but more is not better. The recommendation for adults is to get 1000 mg per day – be careful not to get more than 2000 mg per day unless that is under the direction of your physician.

Q. Are there natural ways to regulate the thyroid for hypothyroidism?

A. There are several trace minerals that are important for thyroid hormone synthesis including iodine and selenium. In particular, some evidence suggests that adequate selenium may lower antibody levels and prevent certain kinds of thyroid disorders, though it probably does not have an effect in established hypothyroidism. As with almost all vitamins and minerals, getting it through the diet if possible is best. Selenium deficiency is quite rare in North America as it is very abundant in fish, meat, dairy, and several grains including rice. People with strict vegan diets or significant malabsorption may want to check their selenium levels. And, some would argue that levothyroxine, the standard treatment for hypothyroidism, is “natural” in that it is chemically identical to thyroid hormone made in the body.

Q. For those whose celiac disease was discovered later in life and who have low bone density, what are the best treatments to increase bone mineral density?

A. I can’t emphasize weight-bearing activity enough – particularly activities which put a lot of mechanical force on the bone such as running quickly and jumping. Adequate amounts of calcium and vitamin D are important as well. Both smoking and excessive alcohol can decrease bone density, so it is important to avoid these activities. If your bone density is so low that you are at high risk of a fracture, medical treatments such as bisphosphonates might be appropriate.

Q. Do unexpected fractures in kids heighten your suspicion for celiac disease?

A. Absolutely – celiac disease is something I screen for routinely in children who have evidence of skeletal fragility.

Q. Were the fracture studies you discussed done on individuals with celiac disease on a gluten-free diet or untreated (not on a gluten-free diet)?

A. They were done on people treated for celiac disease, but were very large database studies, so there is limited information about to what extent patients were adherent to the diet.

Q. Should a teenager diagnosed with celiac disease following a healthy gluten-free diet have a bone density scan for a baseline or wait until later years?

A. At this point, the current guidelines state to “consider” a bone density scan in children at the time of diagnosis of celiac disease. And for children not adhering to a gluten-free diet, some clinicians will recommend repeating a bone density scan. The information may be of use, particularly for children with unusually low bone density where more intensive counseling about dietary adherence, vitamin D and calcium, and physical activity may be warranted. On the other hand, all children with celiac disease should be taking these steps to maximize bone density no matter what the bone density scan shows. So, until new research emerges, I think it is an individual decision for each patient, family, and physician.

Q. Did you say the prevalence of type 1 DM in celiac is 1-3.81? What is the prevalence of celiac disease in Type 1 DM?

A. Studies suggest that the prevalence of type 1 diabetes among patients with celiac disease is in the range of 1-4%. Conversely, the prevalence of celiac disease among patients with type 1 diabetes is approximately 5-10%.

Q. For Hashimoto, does T4 replace everything the thyroid makes? Is there any evidence to support supplementing with T3, or other, in adult females?

A. This is an area of renewed interest among endocrinologists. The thyroid gland naturally makes quite a bit of T4 (so called because it has 4 iodine atoms attached to it), and only small amounts of other thyroid hormone metabolites including T3 (which is actually the most active version of the hormone). T3 is generated in peripheral tissues by specific enzymes which convert T4 to T3. For most people, treating with T4 is adequate, since the body will then convert appropriate amounts to T3 in a regulated fashion. Most research studies looking at treatment with a combination of T4 and T3 have not found any significant benefit either to laboratory test values or to patients’ symptoms when compared to T4 alone. However, there may be a small subset of people who do not generate T3 efficiently and might benefit from combination therapy. This is a question with ongoing research.

Symposium Q&A from Kate Scarlata, RDN, Digestive Health Nutrition Consultant

Kimberly NCA Blog

Here are the Questions and Answers from Kate Scarlata, RDN, Digestive Health Nutrition Consultant.

Q. How do you navigate reintroduction of FODMAPs when patients have experienced relief and are afraid to reintroduce them?

A. In one word: gently. I would re-introduce small amounts of FODMAPs in the subtype (lactose, excess fructose, fructans etc.) that I would suspect would be the least problematic for a patient. If the patient had a tremendous amount of gas, for instance, I might not try fructans first—as these are know to create the MOST gas in the gut. Instead, I might, for instance, try introducing a food with excess fructose first.

Q. Regarding motility, can FODMAPs reduce or slow motility in the small intestine and colon?

A. It is possible that bacteria fermentation in the small intestine can slow motility in the small intestine—and in the colon, fermentation often but not always increases motility.

Q. I’m hearing a lot about gluten and FODMAPs and their effect on the body. Where does the discussion of sugar come in?

A. I believe the inflammatory and immune-response to sugar is under-represented in research and practice. Can you please speak to this? Sugar is typically well digested in most people, but may be poorly digested in the presence of small intestinal inflammation or small intestinal bacterial overgrowth. Diets high in sugar such as the Western diet are associated with inflammation and alterations in our gut microbes that are viewed as less favorable or less healthy. I encourage my digestively challenged patients (and really all of my clients) to use sugar as a treat, to their tolerance, but to not over-indulge. For instance, best to have a small piece of dark chocolate that contains a little sugar than a large piece of chocolate cake with a lot of sugar. I am not in favor of the notion we need to exclude food groups or forbid occasional treats, unless deemed medically necessary. (My opinion!)

Q. Does cooking lower the FODMAP content of foods?

A. If cooking in water, some of the FODMAPs in a food will leach out of the food and into the fluid. If you drain this fluid out, it is possible that you will reduce the FODMAP content. But, just cooking without water should not alter the FODMAP content though this needs to be studied in more detail in the research setting. Pickling foods reduces FODMAP content, soaking and draining does as well, and in some (but not all) fermenting foods can lower FODMAPs. But in cabbage, fermenting actually increases FODMAP content—so sauerkraut is actually higher in FODMAPs compared to cabbage. Because of all these nuances, I can’t stress enough to work with a dietitian with a solid and up to date understanding of the low FODMAP diet.