FDA Not Enforcing GF Labeling Rule?

Recently, Tricia Thompson MS, RD and founder of GF Watchdog has asked the Gluten Free Community for their help.  She is saying that it appears that the FDA is not enforcing the GF Labeling Rule put in place in 2013.  She also has a great link to some information about self testing Gluten devices (at bottom).  Click Here to Read the Ruling

I have been saying this for years. “The FDA does not actively enforce the GF Labeling Rule!” Every time I would say it (last year at the GF Expo; I was given shocked and appalled looks; like I was making it up!) So,  I am glad to hear someone else say that the FDA does not seem to be enforcing the GF Labeling Rule.  There certainly is no accountability for restaurants because the local health department does nothing about it.  If you read it, the actual Rule/Law, said that we (GF manufacturers) would be self regulating; so this is not big surprise to me. Canada will not allow Cheerios to label their GF Cheerios as “GF” anymore, but the United States says, no problem Cheerios, keep making folks sick!  Expecting the FDA to do something is kind of funny…they made it a rule, not a law, because they don’t have the staff to enforce it.

So, I am not really surprised by any of this.  Below is what Tricia is asking of us.  I think this is well worth your time if you or someone you love has Celiac Disease, Gluten Sensitivity or a Wheat Allergy!

Dear Gluten Free Watchdog community,

First a request. We are continuing to remind FDA of our petition and ask for an update. The most recent “reminder” was sent to the Agency on July 6^th. While we wait to hear from them, I have a favor. There is a newly established Twitter handle (@FDASpox) for Jennifer Rodriguez, Acting Associate Commissioner for External Affairs, U.S. Food and Drug Administration.

Today I sent her the following tweet: “Jennifer @FDASpox can you please comment on why the FDA does not appear to be enforcing the gluten-free labeling rule? The agency is aware of numerous mis-branding violations but does not act to have products removed from store shelves. Please click here to see what Tricia has observed  

If you could please tweet your own version of the above or simply re-tweet my tweet that would be great. Thank you!

Also, if you haven’t had a chance to listen to the webinar by Adrian Rogers from Romer Labs on Gluten analysis and the challenges of consumer testing devices, please make the time. You won’t be disappointed. As someone in our community posted to GFWD’s Facebook, “I think everyone in the GF community needs to watch this. Again, Adrian drives home the point that testing foods are not as easy as it appears. It’s a very complicated process with lots of variables.”

The link will only work for the next couple of weeks. Both the audio and slides are available. Click Here 

If you have any questions for Adrian, please post them by Clicking Here

Kind regards,

Tricia Thompson, MS, RD

Founder, Gluten Free Watchdog, LLC

Please check the above information out folks, Tricia is fighting for all of us!

 

Safe Harbor

Our customers truly are amazing people and I wanted to share this story with you because it is such a positive message and it made me cry! On, Friday, some regular customers came into the cafe for lunch.  This family has many serious food allergies and Celiac Disease.

-Mom: Fish Allergy    -Dad: Shellfish Allergy and Celiac   -Son: Allergies to Peanuts, Tree Nuts, Legumes, carrots, coconut and strawberry and Celiac Disease  -Daughter: Allergies to Peanuts, Tree nuts and Legumes.

Dave summoned me out to the dining room to see them.  They were anxiously waiting for Dave and I to come over to chat with them. They presented us with a card. They said it was for their 5 Year “Cafe-iversary “; they have been coming here to eat for 5 years!

The card and message inside said:

Thank you for your kindness, your generosity and your caring. You’re a great example of everything that’s right with the world.

There was a hand written note inside as well:

Maureen and Dave,

It is hard to find the words to tell you what you and your cafe mean to us; I will try my best. It has been five years since we found refuge in the harbor of your cafe. We have been through a lot due to food; just as you have. It was like finally coming in from a storm-tossed sea and finding calm, refuge, safety and those who understood what it was like being out “there”. 

My children saw, for the first time; inclusion. They learned that there are people who do care that they live through a meal! They belonged somewhere outside of the haven of their home and that is everything.  

Five years ago, you helped restore a faith in humanity, helped us feel hope and understanding in what can be an isolating existence. The cafe is open at a cost to your time and energy; but also it hard not to feel the thought behind every sticker, placement of artwork, sign, logo and basket.  You serve not only hungry customers, but the greater good; for every person, especially children, who walk in and think, “whoa, I actually do fit in somewhere, I’m not alone in this after all!”

You open a heart and a world of possibility and are their “safe harbor” in what sometimes feels like a world of storm tossed seas.  These past five years have been some of our toughest; but knowing you has eased that and we thank you. 

Happy Cafe-iversary!

We both teared up and I cried.  As I reflected; I came to the conclusion that Dave and I (and our staff) are immune to the fact that what we do is special; because it is all we do, all day, every day. It was so nice to actually hear their appreciation and read what they had to say. It was also so welcome; it was a reminder to all of us. I shared it with our staff, because without them, we could not do what we do. The staff loved reading the card and note.

We truly have the most wonderful customers. A month or so ago, some regular customers came in and left us a very generous tip…it was so unexpected, but it  definitely lightened our financial burden that month. We are so grateful for all of our wonderful customers.  We want to thank all of you, for being great customers. We are so thankful for the wonderful artwork that the kids leave us on the bulletin board and for all of you sharing our information with friends, family and in your online forums. Most of all, we are thankful for all of you for trusting us to safely feed you and your family.

We are honored and working hard at blazing a trail and making a positive difference.

Thank you all for being so supportive!

New Celiac and Autism Research

Every year I get my fundraising letter from Dr Fasano at the Celiac Center at UMass. What I love about the letter is that he highlights some of the studies that they are doing at this time. They are doing some really cool stuff! (what I hate is that it comes on paper in the mail, so I had to paraphrase and type all of this stuff into the computer rather than give you a link to click on) Once again; I am predicting that many of the big breakthroughs on celiac and autism will come from Dr Fasano and the gang at UMASS Center for Celiac Research and Treatment.

-Collecting Diapers for Celiac Research for their  Celiac, Genomic, Environmental, Microbiome and Metabolomic Study. Basically, they are collecting stool, blood and other tissue samples from infants and mothers from the US, Italy and Spain. They have more than half of the 500 babies already enrolled. The goal is to understand why some people who are genetically at-risk will go on to develop celiac disease; while others who are at risk don’t develop it. By studying many factors along with the microbial colonies in the gut, they hope to ultimately prevent celiac disease before it begins. Well, if I was a baby and had a diaper, I would enroll myself in this study.

-Building an Intestine in the Lab where they are using intestinal tissue from volunteers to grow intestinal “organoids”. They use the 3D mini organoids to study the effects of different drugs and pre/probiotics on the human intestine. I am glad to see this study happening because I remember Dr Fasano saying on one of his visits to the cafe that his fear is that pre and probiotics may be overused and we might become immune to them like what is happening with antibiotics.

-Connecting the Mind and the Gut: the “enteric nervous system” is like our “little brain: in our guts and it’s communication with our “big brain” can have enormous effects on our mood and health.  I remember Dr Fasano saying “the gut is not like Las Vegas; what happens in the gut does not stay in the gut”.  Parents of kids with Autism have been saying this for about 20 years!  I am so glad to see this area being really researched. Recent results (Dr MR Fiorentino’s lab) showed an altered blood-brain barrier and impaired intestinal barrier could very well play a role in neuroinflammation in those with Autism Spectrum Disorders. They hope to make significant contributions to discovering a mechanism that could be used for prevention. (The belief used to be that the body and brain have different immune systems and are separate and therefore don’t communicate; but researchers at UVA discovered the link via the lymph nodes. I blogged about this 2 years ago)

-Celiac Education and Outreach: Celiac Symposium last April and outreach and donations for food for hurricane victims.

The Center for Celiac Research and Treatment is dedicated to improving the quality of life for patients with celiac disease, while learning the cause of the disease and finding a cure.  However, due to reductions in the NIH  (National Institute of Health) Budget they are reliant more than ever before on donations!  

This is one cause that I scrape up some money to support each year.  donate here

Learn More Here

 

Am I Having a Gluten Reaction?

I am constantly amazed by the customers who come in after a long hiatus and say they are getting “glutened” all the the time, their antibody levels are up and they need to come here more often!  Wow, you really have to be getting exposed to gluten on a regular basis for your antibodies to go way up. There are 3 major reasons why this happens to people so often.

1. Cross Contamination
2.  Eating an item that does not have gluten ingredients in it but is NOT labeled GF and not 100% GF
3. Eating at a new restaurant or any restaurant the has “GF” offerings but is not dedicated GF.

I read recently that if you are getting exposed to gluten more than once a month, you are asking for problems! Why is it a problem? Gluten affects every cell in your body because Celiac Disease is an auto-immune disease! The problem I see is that people are not recognizing the symptoms when they are having a reaction. There are more than 300 Signs and Symptoms…you can have a few or many.  Click Here for 300 Signs & Symptoms

Recently, a Celiac customer, who lives in Arizona was in town. Yes, she is a regular customer, because she is here every day that she is in town; we see her more than some people who live 5 miles away! Anyway, she told me what happened to her out in Arizona and how sick she was getting…eating anyplace that had a “GF” menu.  As we talked it was apparent that she was not recognizing the symptoms she was having for about one year! She thought she had a “handle” on this GF stuff. Yes, sinus and ear infections, headaches, inflammation, knife like pains, gall bladder attacks, etc are symptoms! She ended up in the hospital. She also said she was eating “GF” Cheeri-Oh-Nos in addition to eating anywhere with a GF Menu! (see 3 previous blog posts on “GF” Cheerios; they are not GF folks!) Stay tuned, I plan to let her tell her story in the next week or so!

Gluten reactions vary from person to person and the amount of time between exposure to gluten and the time of symptom manifestation varies from person to person. However, for the most part, the reactions become more severe the longer you have been off gluten.

That being said, a person who is constantly being exposed to gluten tends to stay the same and not improve after diagnosis. They never will improve unless they get the gluten out of their system…(6 to 9 mos with no gluten exposure).  I have been dealing with this for almost 30  years and I know the pattern of symptoms that appear and how they evolve in me when I get exposed to gluten!

For me, I will get severe acid reflux within 1 hour and then I know I am in for 10 days of hell! I have a racing heart beat and pains in my legs by the time I get home and into bed. I fight the urgent need to vomit. Sometime in the evening or the next morning I have sharp knife like pains in my right side, diarhea and vomiting at the same time, migraine headache, bloated abdomen. I start sweating profusely and prefer to lay on the cold tile floor of the bathroom and quite franly, it is just more convenient for me than running to and from my bed! By about day 3 the joint pain, constipation, DH Rash (dermatitis herpetiformis; it looks like excema and is the skin manifestation of Celiac Disease which can be biopsied for diganosis), brain fog and Ataxia start to set in. For me, ataxia is the inability to speak in complete sentences, stumbling and falling when trying to walk, walking into walls. By about day 9 or 10 I have MS type reactions, with involuntary muscle spasms in my legs and arms.  I takes about 9 months (to the day) for my DH rash (on scalp, arms, elbows, knees, ankles, face and sometimes with sores in my mouth, nose and ears) to clear, and that is how I know all gluten is out of my system.  If I were to keep getting exposed to gluten, the rash will never go away.

With an anaphylactic food allergy, you know right away…you take benedryl and/or reach for you Epi Pen! With Celiac reactions, it is not so easy to know what is happening, especially if you are newly diagnosed or if you are a child, you can’t always communicate it to your parent. Below are some examples of what customers are sharing with me when they come in.

In just the past month I have had several examples that I thought might help you:

1. A family come in with their child who has celiac disease and they came once when first diagnsoned, but for the past two years they have been eating at any place that claims to have a GF Menu! The child’s doctor said that the Celiac antibodies were very high and they have to stop eating out so much, unless it is at a completely GF place! Well, they came back to see me and Mom said “we need to come here more often”.  The child had the tell-tale signs that I always see in kids, dark circles under the eyes, tired, cranky or mood swings and complaining of stomach aches.
2. An adult, living in an assisted living facility, has not been feeling well. Family brings her in once a month or so.  She said she was losing weight too. I asked her if they checked her antibodies, she said they don’t really follow it for her. I asked her if there was a change in her diet and she said she started eating “GF Cheeri-Oh-Nos” a few months ago and has them every day for breakfast.  I recommended they run new blood work and go get some knock off “cheerios” that are truly GF.  (search this blog to read about the Cheerio-Oh-nos drama)
3. A child who eats here once a week was having stomach aches and symptoms. He had started eating Cheeri-oh-nos. They pulled them out of the diet and he is feeling much better.
4. An adult, diagnosed at least 5 years ago, felt she really had good control of her diet and started eating anywhere that offered a GF Menu. (she lives out of state and comes here a couple of times a year).  She was having intestinal pain, constant ear infections, sinus infections, bloating and just feeling very sick.  It finally occurred to her that it was gluten exposure on a consistent basis. After eating “Cheeri-oh-nos” she ended up in the emergency room. She finally purchased a Nima Sensor and is testing everything.  She said, the trick is to take samples from all parts of the meal, mix them up and then put them in the sensor to test.

Here is a great article on Gluten Reactions: Click Here

What should you do if you think you/your child are getting exposed to gluten? First, get  to your gastroenterologist and get checked out.  Stay safe out there gang and take a close look at your habits!  Look at what and where are you eating.

 

 

 

Jennifer’s Way Bakery Closing

I am sad to say that Jennifer’s Way Bakery in New York City is closing it’s doors. However, from the posts on Gluten Dude’s Facebook Page and on Jennifer’s Way Bakery/Storefront Page, you can’t really tell. It looks like she is closing because she states that she is selling her mixers and cookie sheets, etc. One would not do this if they were simply moving. Many were asking her on her facebookpage if she was moving or closing and she is not responding to that question. So, time will tell. Here are the facebook posts:

Jennifer’s Way Bakery Posting August 26, 2017:

“I opened this place 5 years ago with the one goal- help people like me feel safe while enjoying food. It has been a long long road and so hard running my own business. I’ve had some amazing people along the way lend their time and love and some awful soulless individuals who tried to take something pure and make it for their own gain. To everyone’s disbelief and against odds I have remained standing. Only a handful thought I could even stay open for more than a few months, never 5 years. I am so very proud of not only what I managed to withstand here but so beyond thrilled how many of you I was able to help and feed safely. I celebrated birthdays, weddings and holidays with you and served your children their first safe cookie. My heart is full. However it’s is time to move forward now. My lease on this magical little space is up and I must move on now. I am FAR from done with bringing you safe, reliable, TRUST WORTHY delicious food, it’s just time to regroup.
Tomorrow, sun, if you are in the city and feel like coming by bakery I am having a huge sale on everything from baking sheets to baking pans to my very first kitchen aid mixer! I will also be whipping up some treats as well. Hope to see you all and ……….. stay tuned, I am not done.” 

Gluten Dude’s Post 09/25/17

“Hi folks. Not sure if you are aware but the Jennifer’s Way Bakery in Manhattan is closing up shop. It was a great 5 year run, her lease is up and she’s now planning her next location. This coming Wednesday, Jen, myself and Mrs. Dude will be there from 3:00-6:30. Jen is doing a book signing. And if you have purchased my book, I’d be happy to sign it as well. So come on by, say hi and have some gluten-free goodies. We’d love to see you. Address is 263 E 10th St, New York, NY.”

Either way, I hope she is able to stay in business and open in a new location. I know she put her heart and soul into it and am hoping that nothing but good things happen!

 

Vacation, Eating and What I Learned

For those of us with Celiac and/or Food Allergies..we know how it is when any of us say that we are going on vacation.  Inevitably, we get asked two questions:

Where/who are you going with?         Where will you be able to eat?

I found myself getting so excited to be able to say that we were going to the beach with my family….the food part was not even a concern for me and I just said; “I am bringing all of my own food”. Sometimes we hear; “oh, that must be so hard”.  Actually, it is not hard! I would rather be safe and enjoy my time with my family. I don’t mind eating before we all go out somewhere…what is important is that we are all together and that is what makes me happy!  (I don’t try to bring my own food into another restaurant)

As many of you know, we (Dave and I) don’t get out of the cafe, deli and bakery very often. If we do, it had never been the two of us together at the same time!  Thanks to our wonderful staff; Susan, Jessica, Yvonne, Emily, Ryan, Alana and Dominic; we were finally able to take four days off (Mon-Thurs) of last week. Our staff safely fed our customers while we were gone. I am so grateful to them for allowing us some much needed time off.

Every year, my family gets together at the beach in Maryland and Dave’s family gets together on Lake Michigan. Two years ago, Dave went to see his family for five days and I actually made a trip to Narragansett and Newport, RI to spend time with some family there.  In five years, that has been it folks.  Thanks to the generosity of our friends Jim and Joyce; we were able to go this year because they let use their condo at the beach.

Another exciting part of this was the ability to see my sisters, brother in laws, nieces, nephews, my son, grandson and daughter in law and some close friends. Having a grandson who lives 10 miles away from the restaurant is great, however, the problem is that I have not been able to bond with him. I saw him for a few hours on Christmas Eve, drove 45 minutes to his birthday party in Feb; only to be able to stay for 30 minutes and return to work….that was it. Any other time they have to bring Cody here to see me and this environment is not conducive to bonding with a 1.5 year old.

The bottom line for me is that vacation is about being out of our normal environment…getting away from our exhausting jobs and being able to spend time with those who we choose to be with. For me it was my family and close friends. That is what I was excited about. I think our culture puts too much emphasis on food.  Eating food is just what we seem to do when we are surrounded by people.  The important part for me is the people I am with. (I brought lots of cupcakes for the big bonfire on the beach and everyone enjoyed them!)

For me these 4 days were so great; I did not turn on the TV for 3 days. I spent time with my family. I got to bond with my grandson, Cody, take him to dip his feet in the ocean, play with him in the sand and read books to him. I was able to witness what and incredible mom that my daughter-in-law Kristen is!

Mostly, I am so grateful for the great one-on-one time I got to spend with my son Mike. I was so glad that he told me that he wants my “time” and for me to be “in his and his son’s life”.  He knows very well how committed I am to what I do and he understands my passion (after all, he was one of my first employees 7.5 years ago), but he also expressed his concern over how much I work and how he feels that Dave and I are missing out on so much family time.

What is so great is that Mike share’s my work ethic and his nickname at his job is “Passion”…because he is so passionate about what he does. I found the role reversal very interesting when he used my own words back to me; “I want your time”.  That is music to a Mom’s ears!

We discussed the delicate balance that we all have to walk between personal life and our jobs. I know that I could not have done this when he was young and he said how glad he was that I was home with him when he was growing up. We discussed where I envision One Dish Cuisine Cafe, Deli and Bakery in 5 years and he was not at all surprised by my answer. Then he said he is willing to share me with all of you because he knows that we need safe places to eat. But,  he is “putting me on a time limit to get it all done”.

I better get back to work gang!

PS: No, I never felt left out while my family and friends were dining out… I never felt more included…because I was actually there with them and not hearing about their experiences from someone else!

Four Day Trip from TX to Eat With Us!

We are always so honored when we meet people who come a very long way to eat here. Quite frankly, we have the nicest customers!  This weekend we had a wonderful couple visit from Fort Worth, TX. I was able to talk with Aldon and Ashley and I loved their story so much, I thought I would share it with all of you!

Aldon is a Firefighter and Ashley is a massage therapist. They were talking about what they should do for their eleven year wedding anniversary.  Ashley said “let’s go somewhere where I can eat, find a peanut free and gluten free bakery to go to”. (Ashley has a lifelong severe Peanut Allergy and a pretty severe gluten intolerance) She added; “Aldon is in denial about his gluten issues!”

Well, Aldon took it to heart and started researching. He found us through the Gluten Free Passport Website (Click Here). He was thrilled when he learned that we had a bakery and a cafe and they could actually eat meals and not just live on sweets for 4 days!  He arranged for his parents to watch their two daughters, one with a severe Peanut Allergy and one with severe gluten intolerance.

Aldon really wanted to surprise Ashley so when she was inquiring, he told her they were going to Boston to visit a GF/PF Bakery. Meanwhile, the plans were in the works. He booked reservations at the Wayside Inn (click here)  located in Columbia, MD.  The Wayside is a great place to stay because the owner, David, gets it when it comes to food allergies.  He has a soy allergy and his daughter has Celiac Disease.

When they landed and rented their car and were heading out to eat, they drove here and Ashley was beyond thrilled when they walked in and she learned that she could eat everything in the place! They enjoyed pizzas, sandwiches, chicken parm pasta and lots of treats, donuts, cupcakes and more. They also went and saw the sights and enjoyed all that Old Ellicott City (Click Here) has to offer; including the Firehouse Museum dating back to 1889. One day they headed out to Annapolis. We were able to pack them a Turkey Bacon Avocado Club Sub “to travel” for a picnic.

Believe me when I say this, we truly have the best and most generous and welcoming customers! While I was listening to Aldon and Ashley; other customers were hearing them share their story. Eric and Kim sent them over a package of our “thin mint” cookies and Patti sent them over a couple of candy bars.  We treated them each to a dessert for their anniversary as well. I guess you can say that Aldon and Ashley were truly welcomed back to the table!

Aldon has definitely raised the bar for all of the men out there when it comes to anniversary surprises!  Happy Anniversary Aldon and Ashley and thank you for spending so much of your special weekend with us!

A Tribute to Melinda Siegel Frisch

We meet so many wonderful customers who become friends. I often say that because we are always at the restaurant; our customers become our friends and many are like family because we spend more time with them than we do our own families.

Melinda has been a fixture at One Dish Cuisine Cafe, Deli and Bakery since we opened the doors in September of 2012.  Her bright and cheerful disposition drew people to her. Many of you will recognize her, she was in several times a week to get her favorite dishes, usually a Reuben or our Spaghetti and Meatballs, but she loved just about everything we made.  We got to know her friends too. Sue was often a fixture accompanying Melinda to “her place”. We knew her wonderful family,  husband Mike and her children Hannah and Joel. Mike has given me permission to share Melinda’s story and write a tribute to her…he said, “she would love it”.

Melinda’s life was action packed. She was an IAYT Certified Yoga Therapist and taught Yoga at Body Balance and the Yoga Center of Columbia.  She was a former instructor at Loyola College of MD and Golden Heart Yoga. She had her Master of Science in Yoga Therapy and Master of Science in Nutrition and Integrative Health from Maryland University of Integrative Health.  In addition she had her master of Arts in Spanish form Middlebury College Spanish School in Madrid and Secondary and Elementary education in Spanish from Towson University.

Melinda had been diagnosed with Crohn’s/Colitis but was still struggling with GI issues and often expressed her frustration that her GI was not listening to her. She believed she had Celiac too, but was not tested for it. Melinda was having many issues and was really trying to manage her diet to help manage her symptoms. She always said, “something is not right”.  Finally, she had enough and went to see another doctor who listened to her and ran the right tests. I did not see her for a few weeks, so I knew something was up. She came in to see me and shared the news with me.

The diagnosis was Stage 4 Colon Cancer. She went through several rounds of chemo and always had such a positive attitude. The last few months were very difficult for her. She was not able to eat and was getting very dehydrated. When she was released from the hospital Mike would bring her here to eat. She would always order her Reuben and we would be so happy to see her eat just one bite. I would ask her what she could taste and she would say she could taste some chocolate and I would send her home with a few treats.

On the way out we would hug and cry and she would say that she was so scared. All I could do is hold her and tell her that I was praying for her and that I loved her so much and that I wished I could make it all go away. This scenario was repeated several times. After she left I would walk back into my office and cry and let out a lot of anger.

I never shared this with Melinda, because I wanted her to remain positive. I felt like I was reliving what happened to my best friend Carole; who had the exact same thing happen to her when she was only 33. Her doctor blamed it all on postpartum issues after the birth of her second child.  It was colon cancer. We buried her at 35 leaving a 3 year old and a 5 year old. I was angry at the doctors who were not listening to their patients. I was angry because this was so preventable!  Why don’t some doctors listen to the patient and run some tests instead of assuming their symptoms are in their heads?

For all of you reading this, I know this is what Melinda would say: “Please, if you do anything, take control of your health! If your doctor is not listening and invalidating you or your symptoms; please, please, please, find one who will listen and run the tests needed to make a proper diagnosis. It can save your life!” I know Melinda would never want to see anyone go through what she had to endure. Take control, see a new doctor and possibly save your life!

Melinda, you were a bright light in our lives and we are so thankful to have been a part of your life. I know I will see you again one day and I’ll be bringing the Reubens with me! I love you and am thankful for your friendship, your wisdom and for sharing so much of your life with us and so many others.  Godspeed Melinda Siegel Frisch…..

 

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.

 

 

 

 

 

A Tribute to Super Hero Moms!

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, from food or from bullying; 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 and sister-in-laws; who 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; 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.