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!

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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.

 

 

 

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!

Aldon & Ashley

“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

Our Food Testing Results; How Labs Test Food for Allergens

As many of you know, periodically we send out some of our food to a lab for allergen testing.  Even though our facility is free of allergens, we also count on suppliers to provide us with some ingredients.  Periodically testing our products gives us that extra confidence. (you can see report at the bottom)

This time we tested our Chocolate Cupcakes, “Rye” Bread and a Blue Menu Cheese Pizza. We have the lab test for the following allergens:  Peanut, Almond, Egg, Hazelnut, Total Milk Protein, Casein Protein, Gliadin (Gluten) Walnut, Shellfish (Crustacea), Soy, Sesame, Cashew and Pistachio.

It is important to understand how testing works. The lab has a very specific way of testing food for the presence of allergens.  The results come back in ppm (parts per million).  I am going to make this as simple as possible to understand.   The first thing you need to understand is that zero ppm does not exist; below, I explain why.

When an item is being tested, they assume it is at  0 ppm of the allergen.  They take the sample and inject 2.5 ppm (or some quantity) of the allergen into it. Then they test it to see how many ppm of the allergen it contains.  If it comes back at 2.5ppm, then there is no allergen detected..because they put 2.5ppm of the allergen into the food item. If it comes back at 5ppm. they know it contained 2.5 ppm of the allergen before injecting the allergen into it.  For an item to be called GF it must test less than 20ppm of gluten.

Some companies are certified to 10ppm (GIG), we are certified to 5ppm by the Celiac Support Association.  These companies who give GF Certification require the company to test their products and they charge the company an annual fee to stay in compliance. Companies that do this are those that take it seriously! Remember, the federal law only encourages companies making a GF Claim to test their products..it is not required by the law and the type of testing is not mandated either.  Look for CSA seal or GIG seal to be sure it is GF!

So, when you hear people saying that they want 0 ppm test results; it is just not possible. The test results show what the Detection Limit is (as low as the lab can go at detection) and the Methods they used to test the product.  Usually it ranges between 2.0 and 2.5 ppm. For gluten the testing can only go as low as about 5ppm.

How do I visually understand a Part Per Million?

“If you divide a pie equally into 10 pieces, then each piece would be a part per ten; for example, one-tenth of the total pie. If, instead, you cut this pie into a million pieces, then each piece would be very small and would represent a millionth of the total pie or one part per million of the original pie. If you cut each of these million minute pieces into a thousand little pieces, then each of these new pieces would be one part per billion of the original pie. To give you an idea of how little this would be, a pinch of salt in ten tons of potato chips is also one part (salt) per billion parts (chips).” *SOURCE: Cornell click here for more

When gluten is being tested, it is a little bit different. If they are testing Gliadin; only 50% of gluten is available as gliadin…so to calculate the results you need to multiply the gliadin ppm by 2!  So, if it is 2.5 on gliadin, it would be 5 ppm for gluten.

Testing is not cheap, this round of testing cost several thousand dollars. Here is what our testing results looks like! 

pass-with-flying-colors

tests-feb-2017

Gluten Free Watchdog

Many customers ask me how I learn about unsafe gluten free items so I decided to share this incredible site with you.  Gluten Free Watchdog randomly purchases and tests products for the presence of gluten.  Every week I get emails from them with test results of the products they have tested.  They test items based on what their subscribers want them to test and they test items randomly as well.

This is how I found out that GF Cheerios were not really GF. (see 2 previous blog posts)  I had heard this from many customers as well..telling me how sick they got when they tried them.  It all made sense when I read GF Watchdog’s report on them and how they are not using certified GF oats and they are not using solid testing methods to test the product.  I also learned about a Teff Flour today that is testing higher than 50ppm and it is Certified GF!

How does this happen?  How do you find out about it?

It is easy, just sign up on their website.  The cost is $5 per month and you get more than what you pay for from this invaluable service.

Click Here to Learn More

Non Hybridized Wheat and Spelt

Okay, the subject on “non hybridized wheat and spelt” comes up time and time again so I thought I would set the record straight for all of you.  I had a good laugh last week.  At first it was not funny..I was actually concerned. So here is the story and I am going to use this as a learning experience for you all.

A customer came in saying she had to eat gluten-free (GF). She went on to say that she eats healthy GF breads made with Spelt; also known as Farro or Dinkel.  She wanted to make sure my breads contained this “healthy” Spelt in them.  I think she wanted to educated me about healthy GF eating. I explained to her that we are a GF Facility and that Spelt is NOT Gluten-Free and not allowed in my facility!  She  was stunned.  We were very busy and I was going to try to talk with her further but she just walked out. Maybe she was embarrassed because her husband looked stunned when I said Spelt was not GF.

A person with Celiac Disease (CD) or Gluten Sensitivity (GS) or Wheat Allergy cannot eat Spelt and cannot eat Non Hybridized Wheat when they are traveling in Europe!  I hear so much garbage about this from customers and people on the internet.

Spelt/Farro/Dinkel is gluten. Non Hybridized ancient grains are just as toxic to a Celiac as the modern grains! PERIOD.

There are nuns in Europe producing “GF” Communion Wafers with non-hybridized wheat that they are saying is Celiac Safe.  Wrong. It is testing at 80 ppm….it is not safe folks! There is a safe GF Host out there gang. If your church won’t get it, you can choose to abstain! (I have done several posts on this)

No, I don’t take communion at church and I think GOD is okay with that decision. I could take communion and be sick for ten days and not be able to supply safe meals to those with CD and Food Allergies.  OR    I can skip communion and continue helping others suffering from CD and FA)  Mmmmm, this decision is “no brainer” for me and I don’t think there is a GOD who would hold this against me.

Eating Ancient Grains in Europe: I have heard gluten sensitive people say they went to Europe and ate “ancient non-hybridized wheat” and drank beer and they were fine. Really?  A Celiac would not do this.  So, to the GS folks who do this; maybe you just felt great because the food is so much fresher and not filled with junk and preservatives like it is here so it can sit on a shelf or a sidewalk and remain unchanged for a year!

food-festivals

Modern Wheat Breeding Does Not Contribute to Gluten Toxicity! (ie, the breeding of modern wheat is not what is causing CD or GS or allergies)

-Stay safe and don’t believe everything you read on the internet.

-Don’t believe that GF Cheerios are really GF.

-If you have CD, GS, Wheat, Rye or Barley Allergies, you should not eat Spelt,  Ancient Grains, or “GF Cheerios”. Period! (lots of posts about Cheerios on my blog)

http://naturalsciencenews.com/2016/12/13/modern-wheat-breeding-practices-do-not-contribute-to-gluten-toxicity/