New Info From the 2017 GF Education Day

On Sunday June 11,  I had the pleasure to attend and speak at the Washington DC Gluten Free Education Day again this year. Each year this great event is made possible by the Celiac Disease Program at Children’s National Medical Center. In addition, our bakers Emily and Jennifer did a cooking demonstration of our quick breads.  I spoke about the pitfalls of FALCPA (Food Allergen Labeling and Consumer Protection Act) and the GF Labeling Act and also gave some hints for easy weeknight meals.

This was a wonderful event for those who were newly diagnosed and those who are long time Celiacs got to learn what was new.  There were many activity sessions for children and so many well qualified speakers for adult sessions,  Unfortunately, I could not attend them all.  However, I was most impressed by the keynote presentation; The State of Celiac Disease- Current Research, Latest Advances and Mass Screening Protocols. Below are my notes from the session.

Dr Ivor Hill, Nationwide Celiac Disease Center Ohio; The Quintessential Autoimmune Disorder

-We know more about Celiac Disease than any other autoimmune disease! In 1888 Samuel Gee stated that diet would be the only cure. In 1950 William-Karel Dicke identified wheat, rye and barley as the problem.

-Factors in Celiac Disease are genetics, environmental factors, diet and other unknown triggers.

-Testing Recommendations are antibody blood testing, intestinal Biopsy and Genetic HLA Screening.

-Other grains that may be problematic for Celiacs are: Teff, Oats, Millet because they are in the same family! (Yup, they are a problem for me)

-Genetics; HLA and non HLA Genes found on chromosome 6, you can have DQ2 or DQ28 or both..they are necessary but not sufficient. There are many different versions of DQ2 and DQ8 genes with 40 different mutations associated. There is an autoimmune overlap.

-Trigger Factors; age, progression, prevalence, infections (rotovirus, adenovirus, stress, pregnancy and the Microbiome (lining of intestines) which is a trigger factor and is very different in those with Celiac.

-Research Treatments; Gluten Detox; grain modification is problematic due to the peptides in wheat. Glutenase; enzyme to relieve symptoms after gluten exposure is questionable because our stomach acid can destroy the enzyme.

-Peptide Transport Blockage; problematic…Lorazotide prevents opening of tight junctions in intestine that would let gluten in, but it only lasts about 90 minutes.

-Antibody Blockage or Nexvac 2 will only target those with gene HLA DQ 2.5.

-Future Research: He feels that the future will identify more genes involved in Celiac Disease. Right now half of all cases are cases of people who are asymptomatic.

Dr Edwin Lui, Colorado Children’s Hospital Celiac Disease Center; Is it Time for Mass Screening?

-Celiac Disease is not rare. Right now in the US the rate is 1.3%, Finland is 2% and Sweden is 3% (1984-1996 of all 12 year olds).

-Incidence of Celiac Disease is rising and more people are developing it.

-Who should we screen? Many have no symptoms. Those that are at risk are:

Those with: Type 1 Diabetes (3-12%), Autoimmune Thyroid Disease (7%), Liver Disease, Rheumatoid Arthritis, IgA Deficiency, Downs Syndrome, Turner Syndrome, Pancreatic Disease, Kidney Disease, Addison’s Disease, Parathyroid Disease, Growth Hormone Deficiency, Family History.

-40% of population is at risk of developing Celiac Disease because they have DQ2 or DQ8 genes.

-Following children in Denver study found that 3% developed Celiac by age 15 while 5% developed the antibodies.

Dr Benny Kerzner, Celiac Disease Program Children’s National Health, Wash, DC; Best Practices for Management of Celiac Disease

-Dr Snyder, Dr Liu, Dr Fasano, etc, got together to set guidance for physicians for the care of those with Celiac Disease. Here are a couple of interesting points that he made. Some of this is new information for many of us!

-Check newly diagnosed Celiac for Autoimmune Thyroid Disease, Liver (AST and ALT) and Hepatitis B. (30-70% of Celiacs are non responsive to the Hep B Vaccine if they got it before they started on GF Diet! So make sure you get this taken care of.)

-Vitamin Deficiencies usually correct on their own once following a strict GF Diet…so they don’t usually screen for them unless there are issues that warrant it.  The same for bone density, etc.

Children's National

 

 

 

 

 

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A Tribute to Super Hero Moms!

Mothers day cupcakes 2017

Mother’s Day is here again and it got me thinking about the mothers who are in my life.  The more I thought about it, the more I realized how different the mothers are that come into our cafe, deli & bakery. They are different by necessity. Each year on Mother’s Day we all acknowledge the mothers in our lives but a mother to a child with food allergies, celiac disease or autism is quite different because of the additional burden when it comes to caring for her child. A very big part of this care is safely feeding that child.

If you think about it, most families can go out to eat and celebrate mother’s day and they can go out to eat anytime and anywhere.  If invited to a BBQ; they can go  and relax and eat with friends and family, they can order take out for a quick meal at home, they can go to school or on vacation with no worries when it comes to eating. That is something that the parents who come here with their children are not able to do.

If you know (or are) a mom to a child with Food Allergies, Celiac Disease or Autism, then you know what I am talking about.  If you are not, I would like you to imagine your life and what it would be like if you had to inspect every morsel of food that your child or children ingest because of the fear of behavioral changes, severe sickness or the possible death of your child.

Imagine Yourself in the following situations:

-Your child with autism is not invited to birthday parties. What do you need to do every day to reassure this child that they are truly loved and special?

-Your child is invited to a birthday party and you have to bring every morsel of food with you to make sure that they are safe. You can’t just drop them off and then go out for coffee; you have to watch over them like a hawk to keep them safe from all of the unsafe food around them. What would that be like for you?

-Your family is invited to Christmas or a holiday meal and you still have to make your own safe meal to bring for your child. You never get a break, what would that be like for you?

-Imagine going on vacation and the additional weeks of prior planning required in order to  find stores where you may be able to find safe food and trying to find restaurants that could safely feed your child.  Imagine coming up empty handed and knowing that when you go on that vacation, you will need to drive rather than fly so you can bring all of your coolers full of safe food with you.

-Imagine not being able to eat out on vacation, you have to make every single meal at home. So, basic hotels are out of the question, you must rent a full house with a full kitchen. You never get a true vacation.

-Imagine planning that trip to the beach, renting that ocean front condo and you or your child can never step foot outside or onto that beach because they are selling dry roasted peanuts on the boardwalk right in front of your condo and the sand is littered with peanut shells.  All your child wanted was to go to the beach and you made that happen but your child could only look at that beach through the window!

-Imagine going to a restaurant that says that they can accommodate your child’s allergies and watching them get gravely ill after eating their first bite.  For many this includes administering epinephrine and an ambulance ride to the hospital and a several day stay in that hospital. You then feel guilty for trusting that restaurant or waiter or chef with your child’s life.

-Imagine reading and inspecting every food label, calling food manufacturing companies and being assured the food is safe.  You feed the food to your child and end up calling 911 because it was not safe after all.  How do you forgive yourself when you know it is not your fault, but you are there to protect your child…how do you process this and live with it?

-Imagine sending your child to school and panicking every hour of the day wondering if your child is safe, even when they are grown and in college!

-Imagine the hours spent educating family, teachers, nurses and other students at school about the seriousness of food allergies, celiac disease and autism.Or volunteering to mentor parents of those who are newly diagnosed.  Exhausting!  Then you still have to be nice to the doubters or those who don’t care how serious your child’s allergy is. Frustrating!

-Imagine telling  your family about your child’s shellfish allergy and a family member dangles a shrimp in front of the child’s face on Christmas Day.  Do you still talk to that family member?

-Imagine telling your family about your child’s Celiac Disease and they think that it is okay to give them “just a little bit” and they say things like “he/she does not look sick” or “are you sure it was the “gluten” making them sick?” (Like you and your child don’t know when they have ingested gluten…others know when they have a cold, the symptoms are easy to recognize each time you get a cold; the same is true with Celiac Disease and a gluten reaction.)

-Imagine trying to explain to your family or strangers that your child is not being a “brat”; and that he/she has autism and is having a difficult time adjusting to this new environment. Imagine dealing with the disapproving and incriminating stares from strangers and not ever being able to lose your composure.

-Imagine sitting across from your doctor and hearing him tell you that you have breast cancer and your first thought is “OMG, how will I safely feed my food allergic child while going through this?” (You know that well meaning neighbors and friends can’t bring meals that are safe for your child when you are going through chemo.)

These mother’s wear a halo and a cape that is invisible to many, but not to me. I see the invisible super hero emblem that you display proudly each time your child needs to eat. These mother’s are truly super heroes! I am not saying that these mom’s love their child more than other moms; what I am saying is that they spend more time actively loving, worrying and preventing tragedy than the average mother. These mothers and their children truly inspire me and I am thrilled to be able to allow them some time to relax and feel the difference when dining at One Dish Cuisine Cafe, Deli & Bakery. This is why I am committed to opening more safe havens for these children and their parents.

Mother’s Day would not be complete without honoring the other great mothers in my life. My mother-in-law, Pat, raised a wonderful son, David, who is committed to welcoming folks back to the table with me here at One Dish Cuisine.  Pat’s weekly presence and support mean so much to me and I am so grateful to have her love and support and to have her in my life.

Additionally, my daughter-in- laws are wonderful mother’s to my two grandsons! I am so thankful for their monetary sacrifices and the decisions they both made to stay home and be with their child and bringing them to the cafe so I can see them! Truly, incredible.

My ex mother-in-law, Emily, is still a support system to this day! She is still that safe port in the storm for me when I need to talk with someone and she always gives me the courage to stand up and dust myself off and move on when things go wrong. I am so grateful that we have maintained such a wonderful relationship and I have learned so much from her and am happy to still call her my friend.

For my sisters who each show their children the love and support that they need; unique to their own circumstances. Each of you inspires me with the challenges that you handle so well each and every day.  Thanks for being great moms and great sisters.

My mother, Vickie, who had seven children in eight years (no twins), buried two of them when they were young and still managed to pick herself up each day and  chose to see the “good” in her situation. Not only has she financially supported One Dish Cuisine but she taught me that loving and giving is the most important thing a person can do on this earth and when you combine that with following your passion; then you will feel complete. It took me quite a few years to get over the self induced “pity party” that I was having about my own situation, but thanks to my mom, I finally saw the light and understood that the food I was making for myself could also serve the needs of others.  I am happy to be able to live with passion, purpose and sleep well at night. I have never worked so hard or so many hours in my life and I don’t have any personal time for friends or family, but my mother taught me that this type of sacrifice is okay; knowing that what I am building here is so important for so many in need. I am so grateful that she taught me not to be afraid of challenges and that faith, love and giving are the most important gifts that I possess and that I have the ability to use these “gifts” every day and these gifts that I have don’t cost me anything when I give freely.  I am thankful for my mother never giving up on me, she is truly my hero.

Happy Mother’s Day to all of you great mothers, you all are Super Heroes!

I publish this each year.

Another One Bites the Dust

Wow, this makes me sad; seeing another place bite the dust! I definitely loved Eva Ruth’s Bakery in Middletown, RI when I went back “home” to see family!  They had a full bakery and did a few sandwiches too.

Some of you probably remember me writing about my visit a couple of years ago. I was so happy to be able to support this awesome place when I went back to visit family.   Not only did they make great GF; they also made great Dairy Free items.  This was an awesome safe place for me when I was there 2 years ago.  I wish I could have visited more often but I have only taken 1 vacation in the past 5 years.  The website is down; this is what Ruth had to say on their Facebook page:

Dear Valued Customers of EvaRuth’s Speciality Bakery:

After seven years of business, the bakery will be closing permanently. This is a very difficult decision for me to make since my love for the bakery, its mission, and of course for you as customers remains undiminished. Concerns however related to my health and revenue make this decision best – while hoping that EvaRuth’s product line might again become available to you. The store’s final days and hours are:

Friday, April 21st 9:00am – 3:00pm and Saturday April 22nd 9am – the sale of all prepared foods and frozen bakery products. First come – first served.  Once again, I thank you for your dedicated patronage over the years and hope the best of health for each of you!  

Lesson: Please support the Gluten Free & Allergy Free places who’s sole existence is dedicated to keeping  you and/or your child safe when eating out!

Thank you Ruth for sacrifice on behalf of the Celiac and Food Allergy Community!Eva Ruths GF Bakery

Lupus; Hard to Diagnose

Many of our Celiac customers also have Lupus; another was just diagnosed last week! So, I thought I would share some information with you about it and why it is so hard to diagnose. First, like Celiac, it is an autoimmune disease and it has many different symptoms and not everyone presents with the same symptoms!

Lupus symptoms can develop slowly or come on very quickly.  Symptoms may also be mild or severe and they can be temporary or permanent.  However, most have flare ups and then things tend to subside.  Lupus occurs when your immune system attacks healthy tissue in your body. It is thought that Lupus is caused by your genetics and something in your environment that triggers it.  Some triggers may be sunlight,  an infection or certain blood pressure, anti seizure and antibiotic medications.

It is more common in women and is most often in people ages 15-40 and in African Americans, Hispanics and Asians.

These signs and symptoms will depend on which body systems are affected. 

Most Common Signs are:

-Fatigue and Fever

-Joint Pain, Stiffness and Swelling

-Butterfly shaped rash on the face that covers the cheeks and bridge of the nose

-Skin lesion that appear or get worse with sun exposure

-Fingers or toes that turn white or blue when exposed to cold (Raynaud’s Phenomenon)

-Shortness of breath, chest pain, dry eyes

-Headaches, confusion and memory loss

Complications can effect:

Kidneys, Brain and central nervous system, blood and blood vessels, lungs and your heart. It increases your risk of Infection, Cancer, Bone Tissue Death (avascular necrosis) and pregnancy complications.

Treatments 

Anti Inflammatory Drugs, Steroids, Immunosuppresents and Antimalarial drugs.

Diagnostic Tests: Blood Counts, Urine Tests, etc!

There are many Lupus Support Groups, just do a google search and you will find many!

For More Information visit the Mayo Clinic site: Click HereLupus

 

St Pat’s Day; Safe GF Beers and Food!

How do you navigate Saint Patrick’s Day with Celiac, Wheat Allergy or Milk Allergies? Well, I am gonna give you some insight and talk about the food and the beer. Yup, where do you get some safe food and the Good, the Bad and the Ugly when it comes to Gluten Free (GF) and Gluten Removed Beers!

When I remember St Paddy’s day, I think of corned beef, Irish Stew, Colcannon (Irish Potato Salad) and beer.  I have great memories of my childhood and the parties my parents would throw with our friends, neighbors, parish priests and nuns all letting their hair down to celebrate Saint Patrick; the Patron Saint of Ireland.

Who was this Saint Patrick and why do we all want to party with this guy?  Why do we have this religious and cultural celebration each year on the anniversary of his Death; March 17th?  Well, it started off as Religious Holiday in the 1600’s; a Holy Day of Obligation for Catholics because it was he who brought Christianity and Catholicism to the Pagans of Ireland. It is said that he taught them about the Holy Trinity using a 3 leaf clover.

Shamrocks

I guess everyone caught onto all of the fun that the Irish were having and now this holiday is celebrated in more countries than any other national festival!  Ah, those were the days..not that I was around in AD 385-461, hanging out with St Pat, but passing on traditions is what the Irish do best. However, way back in once upon a time, time;  I could go to church, come home and celebrate and I could drink beer; real beer. Most Catholic Dioceses allow consumption of meat on Friday when the holiday falls on a Friday during Lent. The good news is that you have dispensation if you live in the Archdiocese in Baltimore or Washington, DC!  The Cardinal said…let them eat meat!

The Danger Foods on St Paddy’s Day: These memories get my mouth watering  for the real deal folks! Many don’t realize it but a whole lot of beer (Guinness) can be put into the stew and even the corned beef or something as innocent as a burger! (yes, a burger). Not to mention that the stew in mainstream places is thickened with flour too. Although, you don’t need to thicken with flour when you have potatoes in a stew.  Then there is the butter and milk in the mashed potatoes in a shepherd’s pie. Wow, talk about feeling left out. Not this year gang, you can have traditional Irish fare without sacrificing taste or getting sick! Here we go gang; first the food and then the Beer.

FOOD: We have you covered with safe food at the Cafe, Deli and Bakery; then you can pick up your safe beer on the way home!

-Traditional Irish Stew: Maureen’s recipe with Beef and Lamb and a soft roll to soak up the juice; Free of Gluten, Dairy and Top Allergens

-Traditional Reuben: Maureen’s recipe available free of all top allergens or choose real Swiss cheese.

-Irish “Cream” Whoopie Pies: Chocolate and mint “cream” filling!

irish stew 3

Beers: The Good, The Bad and The Ugly!

Taste Good GF Beers:  I have not had them all, so the other source is Gluten Dude!

-Pyro (Burning Brothers Brewing out of MN, co founder has Celiac)  Click Here

-Glutenberg (Quebec, Canada; owner gluten sensitive) Click Here

-Harvester Brewing (Ground Breaker Brewing out of Portland, OR) click here

Taste Bad GF Beers:

-Redbridge: I really, really, really tried to like this one back when it came out; it was my only choice and tasted like sorghum, bitter, yuck enough said! Turned m

Ugly Gluten “Removed” Beers that you should not drink if you have Celiac or Gluten Sensitivity or serious allergy to wheat or rye or barley!

-Omission

-Daura

-New Planet

I have had several gluten sensitive customers tell me that if they have 2 or more of these “Gluten Removed” beers, they get sick..so why would a person with Celiac. Gluten Sensitivity or a Food Allergy try them? It is like people knowing that “GF” Cheeri-oh-nos, as I call them, are not safe but are still eating them. Then they go to the doctor when they can’t understand why they don’t feel good and he says their celiac antibodies are high. Crazy. Here is the info you need to know about Gluten Reduced Beers and why they ARE NOT safe referencing a study done by GIG (Gluten Intolerance Group). Click Here

What does Gluten Dude have to say? Click Here

 

“No sex, age, tissue or organs are spared from effects of Celiac Disease”

This is the #1 thing you should listen to if you or someone you love has Celiac Disease or Gluten Sensitivity. If you have people in your life or even one of your doctors who doubt the serious nature of it, have them listen too! (link at bottom)

2/27/17: Dr Allessio Fasano from the Center for Celiac Research is interviewed by Dr Theresa Nacassio on her radio show.

He talks about Celiac Disease, Gluten Sensitivity, the Microbiome, Leaky Gut, neurological complications in the brain and Autism, ADHD, Dimentia, Depression, Skin (Dermatitis Herpeteformis), Probiotics, Fecal Transplants and more!  He even talks about the Non-hybridized wheat myth, GMO’s, pesticides and more.

“No sex, age, tissue or organs are spared from the effects of Celiac Disease….”

The interview starts at  4min and 55 seconds on the timer in the link. You can fast forward through commercials too.  Dr Nacassio also has lots of other links to Dr Fasano’s interviews and talks on Celiac Disease up on her site.

Click Here

A Funeral and Safe Eats in CT!

Fear: traveling out of town for a funeral with Celiac Disease and Food Allergies.

In this blog post I share with you the story of my trip to Branford, CT for a funeral and the homework I did up front to find a safe place to eat so I could be with my family. Branford is a beautiful seaside New England town just north of New Haven off of Rt 95.

Usually, I would just not go out of town for a funeral for fear of getting sick when out of town.  However, I really wanted to be there for my Aunt Teresa and say goodbye. Not only is she my mother’s sister, she is also my godmother and we were very close.

Last week, prior to leaving I did my homework and planned on packing a cooler with food and also trying out a restaurant I had been wanting to visit for a few years.  I emailed ahead of time and they were very responsive, so I was hopeful about eating a meal while I was at my Aunt Teresa’s funeral.  I packed the car and cooler and had five hours all to myself while driving up route 95.

I reflected on my Aunt Teresa’s life and what I have learned from her.  I definitely shared her sense of humor and love of people and I also share her work ethic.  They were great role models for me. Back in 1968 she and my late Uncle Len founded Lenny’s Indian Head Inn in the quaint seaside town of Branford, CT.  How they did it with 3 kids; a  12 year old, a 6 year old and a 2 year old is beyond me! Teresa ran the kitchen with her incredible seafood recipes and Len ran the bar. They put everything they had into it and they struggled, they really struggled in the early years. My three cousins were working along side of them too. Long hours, six or seven days a week.

Soon they were winning awards in CT and in Boating and Yachting Magazine for their incredible food an casual atmosphere.  I am so happy to have seen them enjoying their success in the later years. Whenever we came to visit, we went to the “Joint” as the family refers to Lenny’s. The whole family was always working and if we wanted to see them, we went to the Joint and chatted in between them waiting on customers.  It became like a second home, we even got to know the employees.

The first call I would make when I was struggling with One Dish Cuisine was to my Aunt T. There was not a situation she had not been in before and she always said to me; “don’t give up if you have great food”. That was and still is great advice.  I will miss talking and laughing with her on the phone.

However, I am very limited in what I can eat at the Joint because the place is full of gluten and there is no gluten or allergy free menu. That is where preparation comes in.

lennys

A few years ago I was coming through Branford to see my Aunt and cousins. I had heard about a new restaurant in the center of town called HOME Restaurant. However, they were closed for vacation and I could not stop in and check them out.  This time, I emailed before my visit and they responded quickly. I felt very comfortable so the plan was to bring my cooler with my own food and stop in there for a meal or hopefully two meals.

I rolled into town at about 2:30 pm and I was greeted by Steve, the owner Jared’s father. I immediately felt comfortable chatting with him.  The interior is very comfortable with a roaring fire going in the fireplace and it reminded me of someone’s home!  Steve provided me with a gluten-free menu and we discussed how they keep items Gluten Free and how they will accommodate dairy free as well.

Steve told me that he has lived with a tree nut allergy all of his life, so it was no surprise that he gets it! They cut all of their own fries and have a dedicated fryer.  The gluten free burger buns are also dairy free.  I ordered their burger (minus the boursin cheese) with caramelized onions. He also discussed their procedures and how they prevent cross contact. However, there was still the disclaimer on the menu. Wow, is all I can say. What a great burger and the fries were fantastic too! I did not have a reaction or get sick.

Jared was busy working on the cooking line so I did not get to meet him.  I told Steve that I would be back the next day, after the funeral, so I could pick up a meal to take back to Lenny’s for the reception.  The next day I picked up fries and brussel sprouts and was able to head back to the Joint and sit with my family and have a meal.  That was the best part, being with my family and actually eating with them too. What was even better is that I did not have to cook the food myself.

I learned a lot from this trip. There are people out there who take Celiac Disease and Food Allergies seriously.  I realized that I miss way too much time with my family and that pre-planning goes a long way.  Prepare by checking out AllergyEats, Allergy Free Passport, Gluten Free Passport, Gluten Free Travel Site and Find Me Gluten Free.  Email the restaurant in advance and take a chance and go out and live!  I am also in process of leaving a rating about Home on all of the apps too.

I got to spend time with my sisters and cousins, niece and nephews. We even took a bunch of group photos in front of the huge stone fireplace at Lenny’s.  Everyone made it except for eight of the cousins. So in typical Irish fashion we got back at them for not being there by yelling out each of their names as photos were being taken of the rest of us.  I am happy to report that  “Maureen” was not one of the eight names being yelled out for being absent.  Being with family and enjoying safe food; now that is what I call “living”.

Thanks to Aunt T and my cousins for being great role models when it comes to work ethic and persistence. Also a big thank you to Steve and Jared at Home Restaurant for taking care of me and making me feel right at home!  I am ready to click my ruby red slippers together and be transported back to that burger and fries because there is no place like HOME Restaurant in Branford, CT!

there-is-no-place-like-home-wizard-of-oz

Click Here for Home Restaurant