Cheeri-Oh-Nos, Not GF Says Canadian Celiac Association!

In the summer and fall of 2015, I spent a lot of time blogging about the sloppy processing and testing of General Mills “Gluten Free” (GF) Cheerios. Not only are they not using certified GF Oats, they are using sub-par testing methods to make their”GF” claim! Hence the nickname that I gave them; “Cheeri-Oh-Nos”! The Canadian Celiac Association has just advised those with Celiac Disease or Gluten Sensitivity not to eat them.

What happened and why have I been perpetually banging my head against the proverbial brick wall for over a year? How can this be so?  You just won’t believe it, so here is the re-cap and update.

Basically, the problem is that General Mills (GM) is using contaminated oats and “shaking” them in order to get off the offending wheat, rye and barley. Then they are using a testing method known as “means testing” to get their final ppm. A product must test below 20ppm to be called Gluten Free. So, if they make a batch of cheerios, they will  take out several samples…if one sample is 21pm, one is 80ppm and one is 5ppm..they would combine those to get the actual parts per million. Then they would keep adding in batches at lower ppm to get their 20ppm score. That is dangerous because in the end, you can mix them together over and over but there is still a high likelihood that some or many boxes will test higher than 20ppm.  The big problem is that they were not testing the final batch or boxes.

This practice resulted in many Celiacs getting sick and complaints to the FDA. Eventually GM had to recall 1.8 million boxes of GF Cheerios.  How can this be? Well, it is simple folks, the FDA does not mandate testing or a particular method for testing..they suggest that each company regulate themselves.  Yup, GM is NOT looking out for those with Celiac Disease or allergies to wheat, rye and barley!

A regular (celiac) customer came in last month and told me that his blood levels were elevated and he was having stomach problems and could not figure out why because everything he is eating is GF. He told me he would be going in for new endoscopy and biopsy in the next few weeks. I asked him, to tell me what he was eating for breakfast and he said “GF Cheerios”.   I asked when his issues started…he said around that time. He was shocked when I filled him in on the happenings. I directed him to my blog articles from last year and suggested he also do a google search and read what Gluten Free Watchdog has been saying and also suggested he remove the “GF” Cheerios and see how he does.

If you are a Celiac, Gluten Sensitive, or have an allergy to wheat, rye or barley; you are playing a game of Russian Roulette if you are eating GM’s GF Cereals.

Many of us have been outraged that the Celiac Associations in the US have not been more vocal about this. Last month the Canadian Celiac Association recommended that those with Celiac Disease or Gluten Sensitivity not eat them.  Gluten Free Living Magazine just wrote an article about this. Click Here to Read Article

bang head here

 

 

GF/Food Allergy/Autism Bloggers, How They Help

There is no doubt that, blogging has become huge and it is because all you need is a computer. Anyone can be a blogger..writing about things you are passionate about. Your blog can be all about your family, or child, or job, or hobby, the possibilities are endless.  The best part is that you don’t even need to have followers!

My passions are celiac disease, food allergies and autism. However; I reluctantly moved into the blogging world. For those of you who first started getting my newsletter back in 2010, you know that I put many articles in the newsletter each week. Sometimes it would take me 5 hours to get it all together. My problem was two-fold: I needed to cut back on the content and the newsletter was not archived. This meant that readers would be calling me asking me to email them an old newsletter or article. I had to make it more manageable by having all articles in a central place so my readers could get to new and old information any time.  So, when I had the web-site re-designed, we added a Blog Tab. (I still have not transferred over all articles yet!)

I started reflecting on what GF, Food Allergy  and Autism Bloggers “bring to the table”.  First, they serve as a voice for their communities. These communities offer acceptance, understanding and support 24-7!  You don’t need to wait for the monthly meeting for some support or a sympathetic ear;  you just turn on your computer and you are set. Instant gratification!

This is so important to those with Celiac Disease, Food Allergies and Autism.  Why?  Because if you or a loved one are affected by any of the above, you are subject to scrutiny.  Unfortunately, much of the general public feels that the Gluten Free Diet is just a fad diet, that food allergies are just made up and Autism is just a symptom of a discipline problem that you have with your child.

I can’t tell you how many stories I have of my own about being made fun of, about invalidation and doubt from friends and family.  There are customers who tell me stories of a family member dangling shrimp in front of their child who has a shellfish allergy. The family members and friends who doubt your Celiac Diagnosis and talk behind your back.  The friend or family member who thinks that Autism is made up because “the parent does not want to parent” and hearing “we all did our homework by ourselves growing up…we didn’t need an adult next to us the entire time, he just needs to be disciplined and you need to stop spoiling him and giving into his whims”.  Or we hear, “I know how you feel.”  When they have no idea what you are dealing with.

Well, that is exactly the crap we have to live with folks.  Having bloggers who give a place for sharing and caring in the areas of Celiac Disease, Food Allergies & Autism is so needed and so appreciated.  These bloggers create a community that is so far reaching and inclusive by educating, sharing and giving a voice to those who often have no outlet or support system. Sometimes we just need someone to help us find our sense of humor again.

Why has blogging exploded? Well, sometimes, even our doctors are not a support system…they don’t have the time and in some cases they just don’t have the knowledge; leaving some suffering; un-diagnosed for far too long.  Support groups meet monthly or quarterly and sometimes you just can’t wait that long.  Often, you are in overwhelm and need some support before you explode. You need someone to actually listen to you; not invalidate you. Someone who will actually hear what your are saying; people who are going through the same thing and support you….. via your favorite blogger!

Turn on computer; find favorite blogger and you can be “HEARD” almost immediately! 

Thank you to all of you great bloggers out there. You help keep us sane while dealing with   Gluten-Free Diets, Food Allergies and Autism. Thank you all for being there to catch us when we fall and most importantly educating us and helping us keep our sense of humor .

There are so many great blogs! Here a just a few of my favorites:

GF Blogs: Gluten Dude, Gluten Free Girl, One Dish Cuisine

Food Allergy Blogs: Food Allergy Mama, Allergy Eats (Paul Antico)

Autism Blogs: Autism Daddy, Confessions of an Asperger’s Mom

Click Here to vote for GF Bloggers

support 3

 

“Class 2 Food Allergy”; Oral Allergy Syndrome

It is that time of year again. Fresh fruits and vegetables are in abundance; customers come in and must avoid certain raw fruits and veggies.  Last year I posted in our newsletter, blog and facebook page about Oral Allergy Syndrome (OAS) and decided it is time to post it again after I saw this great chart (at bottom) in an Allergic Living Magazine article. (written by Colleen Seto).  Oral allergy syndrome is also known as Pollen Food Syndrome and is considered a class 2 food allergy because it is linked to specific raw fruits and vegetables, spices, and even nuts or seeds.

It effects those who have allergies to trees, grass and ragweed. Basically the immune system will recognize the protein from these certain fruits and veggies as being the pollen protein and then a reaction will occur. It starts by being allergic to pollen and upon inhaling it; then progresses when they body starts reacting to foods that share similar proteins with the pollen. Making the food allergy secondary to the actual pollen allergy.

I have many environmental allergies and had to take allergy shots for a few years when I was younger. I definitely notice mild OAS when I eat things like raw bananas, strawberries and some apples. (I also notice an issue when I consume Stevia; a sweetener from the leaves of the Stevia plant, part of the sunflower family.)  According to the article; the reaction is usually immediate and it can start with itchy lips, tongue, throat, and can cause swelling.  It usually is mild and subsides when the offending food is in the digestive system where the proteins are broken down. However, cooking the food thoroughly will break down the protein so ingesting is not a problem.

OAS can be hard to diagnose because a reaction to a ripe fruit is more severe than to an unripened fruit.  Between 30 and 70% of the population with a birch pollen allergy have OAS, however, most have only mild reactions. Some can experience vomiting, cramps and diarrhea while only 2% have an anaphylactic reaction like swelling of the throat, hives and trouble breathing. (Nuts, celery, peaches and apples tend to be linked to the more serious reactions)

See chart below and Click Here to Read Full Article

Oral Allergy Sydrome

 

Vitamin D: “You Are What You Absorb!”

“You are what you absorb!” If you are eating foods rich in Vitamin D and are not absorbing it, you are only as good as what you are able to absorb! (Think Celiac, think Leaky Gut or Gluten Intolerance/Sensitivity). Vitamin D plays a big role in our immune system, our hearts, bone strength and even cancer.  Do you know your levels? If not, you should ask your doctor to order the blood work the next time you are in for a check up.

I will go over why we have Vitamin D Deficiencies, Symptoms of Deficiencies, How Much Vit D is enough and How Much is Too Much; or toxic. (Recently, my doctor had to reduce my Rx of Vit D) You will see that it really depends on who is looking at your levels! I use myself as an example and also went to several different sources for this blog post and I think you will find the information very interesting.

First, I will be giving you information that I get from Amy Myers, MD.  This is the most thorough information I have seen on Vitamin D and it is easy to read and understand, even if you don’t have the letters “MD” after your name.  Everyone should get their levels checked because 36% of healthy adolescents and 57% of adults in the US have a deficiency. According to Dr Myers, they believe those numbers may be even higher because the previous recommended levels of vitamin D were too low!

Dr Myers says; “The widespread deficiency of Vitamin D is concerning because it plays an important role in many areas of our health. It contributes to bone strength, heart health, and cancer prevention. And, it plays a hugely important role in your immune system and can be a determining factor in whether or not you develop an autoimmune disease.”

There are 3 reasons this occurs:

  1. We don’t get enough sun exposure, we do we put sunscreen on & reduce it by 90%

2. Our diets lack vitamin D (salmon, fish liver oil, organ meats, beef liver, egg yolk)

3. Fat Malabsorption

The two foods most fortified with Vitamin D are breakfast cereals and milk.  Mmmmm, I am screwed because cereals contain gluten and milk is; well, it is milk and I can’t have that!

Fat Malabsorption: One thing that surprised me is that she talked about fat malabsorption. Vitamin D is fat soluable. So, that means that your gut will have to absorb fat in order to absorb Vitamin D. (Could this be why my cholesterol is low; usually between 118-127?)

Vitamin D also needs Vitamin K because it works in tandem with Vitamin D and makes sure the Vitamin D ends up in our bones and not in our arteries.  She also says to make sure we have Vitamin E and Vitamin A because they work with Vitamin D as well.

I know I have fat malabsorption. This, has always been a problem for me and it also contributed to a lot of clogged toilets prior to my celiac diagnosis. If I eat anything fatty, I see it in the toilet, it looks like a bunch of oily and undigested fat. (I ate some wings on the Sunday of Memorial Weekend and it is a good thing we were at home on Memorial Day!)

Vitamin D is a fat-soluble vitamin, meaning your gut has to be able to absorb dietary fat in order to absorb Vitamin D. The saying goes “you are what you eat,” but in reality, Dr Myers says that “you are what you absorb”.  She goes on to say; “if you have a leaky gut because of inflammatory foods such as gluten, infections, or toxins, your ability to absorb nutrients and vitamins may be severely compromised”.

I had to beg a doctor to check my levels and when they were finally checked, my results were  2 and a 7;  I was given an Rx . I was definitely feeling better, my neuropathy went away and on my last check up, I was at 50 thanks to 50,000 IU Rx supplementation. But I was having some complications that my Endocrinologist was not taking into consideration. (more on this later)

However, Dr Myers suggest we aim for between 60-90 ng/ml. (I address the different recommended levels in a chart below) For more information from Dr Amy Myers on Vitamin D and it’s Impact on your Immune System (Protective Immunity and it’s role in Autoimmune Disease and How to Increase your Vitamin D with Vitamin K) Click Here for info from Dr Amy Myers

Symptoms of Vitamin D Deficiency?

Vit D Deficiency is common in people with untreated Celiac Disease but you don’t have to be a Celiac to have a Vitamin D deficiency; which effects digestive, glandular, immune, integumentary, muscular, nervous and skeletal systems via:

Impaired bone mineralization, muscle weakness, alterations in maintenance of calcium and phosphorous hemeostasis, metabolic functions, male reproduction and is implicated in psoriasis.  Also, Bone Pain, Easy Fractures, osteopenia/osteoporosis, (bone thinning), osteomalacia (bone softening), in adults, affecting the spine with vertical shortening of the vertabrae, the pelvis with flattening and narrowing of the pelvic outlet and the lower extremities with bowing in the long bones, muscle weakness, defective coordination for walking, osteomalacic myopathy and spasm, psoriasis, decreased male fertility.

In young children, development of rickets with bone bending of the weak shaft and delayed walking in 1-4 year olds. In older children walking is painful with development of bow-legs and knock-knees.

*These symptoms are often seen as a result of  malabsorption in Celiac Disease. Celiac related deficiency responds to the gluten free diet and supplementation produces rapid resolution of symptoms.  Source: Recognizing Celiac Disease by Cleo J. Libonati, RN, BSN

HOW MUCH IS ENOUGH VITAMIN D?

There are different recommended levels depending on who is looking at your results as seen in the chart below. My endocrinologist was fine with me at 50 ng/ml; see the chart below. However, my Internist (my new General Practitioner) thinks that is too high. (this will all make sense at the end of this) I did some checking and all sources say something different.  Below is what I found:

Vit D recommended levels

NIH (National Institute of Health) also has some different info: 

 
nmol/L** ng/mL* Health status
<30 <12 Associated with vitamin D deficiency, leading to rickets
in infants and children and osteomalacia in adults
30 to <50 12 to <20 Generally considered inadequate for bone and overall health
in healthy individuals
≥50 ≥20 Generally considered adequate for bone and overall health
in healthy individuals
>125 >50 Emerging evidence links potential adverse effects to such
high levels, particularly >150 nmol/L (>60 ng/mL)

* Serum concentrations of 25(OH)D are reported in both nanomoles
per liter (nmol/L) and nanograms per milliliter (ng/mL).
** 1 nmol/L = 0.4 ng/mL

Reference Intakes

Intake reference values for vitamin D and other nutrients are provided in the Dietary Reference Intakes (DRIs) developed by the Food and Nutrition Board (FNB) at the Institute of Medicine of The National Academies (formerly National Academy of Sciences) [1]. DRI is the general term for a set of reference values used to plan and assess nutrient intakes of healthy people. These values, which vary by age and gender, include:

  • Recommended Dietary Allowance (RDA): average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy people.
  • Adequate Intake (AI): established when evidence is insufficient to develop an RDA and is set at a level assumed to ensure nutritional adequacy.
  • Tolerable Upper Intake Level (UL): maximum daily intake unlikely to cause adverse health effects [1].

The FNB established an RDA for vitamin D representing a daily intake that is sufficient to maintain bone health and normal calcium metabolism in healthy people. RDAs for vitamin D are listed in both International Units (IUs) and micrograms (mcg); the biological activity of 40 IU is equal to 1 mcg (Table 2). Even though sunlight may be a major source of vitamin D for some, the vitamin D RDAs are set on the basis of minimal sun exposure [1].

Table 2: Recommended Dietary Allowances (RDAs) for Vitamin D [1]
Age Male Female Pregnancy Lactation
0–12 months* 400 IU
(10 mcg)
400 IU
(10 mcg)
1–13 years 600 IU
(15 mcg)
600 IU
(15 mcg)
14–18 years 600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
19–50 years 600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
600 IU
(15 mcg)
51–70 years 600 IU
(15 mcg)
600 IU
(15 mcg)
>70 years 800 IU
(20 mcg)
800 IU
(20 mcg)

* Adequate Intake (AI) Click Here to go to NIH

Symptoms of Too Much Vitamin D (toxicity):

According to the Mayo Clinic, the main consequence of vitamin D toxicity is “a buildup of calcium in your blood (hypercalcemia), which can cause poor appetite, nausea and vomiting. Weakness, frequent urination and kidney problems also may occur. Although vitamin D toxicity is uncommon even among people who take supplements, you may be at greater risk if you have health problems, such as liver or kidney conditions, or if you take thiazide-type diuretics. As always, talk to your doctor before taking vitamin and mineral supplements.”  Mayo Clinic Too Much D

So, who do you listen to? Well you always listen to your doctor, but again, I think you need to listen to your body (and so does your doctor). On the mega Rx dose of Vitamin D, I was definitely having increased urination, more frequent kidney stones and I also take two thiazide-type diuretics.  So, my GP (internist) looked at my numbers and the other factors adversely  affecting my health and reduced my dosage. We will do blood work in 6 weeks to see what the result is, but I have not had any major stones. (FYI: I recently changed my GP to an Internist who looks at the whole picture and how everything affects my overall health. Not only does she understand Celiac Disease, she and her daughter have Celiac Disease and I believe this is the best decision that I have made for my health!)

I hope you found this information helpful.

 

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Today Show Makes Fun of Nut Allergies & Epi-Pens

Well, considering that this is food allergy awareness week; I was even more horrified to see this clip from the Today Show. Matt and Al not only make fun of food allergies in this clip, they go so far as to bring in the Epi-Pen. I can’t help but wonder why they decided to make light of nut allergies and Epi-Pens.  They easily could have made fun of sugary or high carbohydrate items and then made light of the insulin that a diabetic needs.  Why is this happening? At the end of this post, I have symptoms and a great photo you can use to raise awareness.  See video clip below:

click here for short clip from Today Show

Quite frankly, I think this is happening because food allergies are not taken seriously and the same goes for Celiac Disease.  This is seen all the time when people make fun of the gluten free diet. This is the first time where I saw two grown men literally make fun of nut allergies and epi-pens. Everyone is entitled to free speech…and I defend that right, therefore, I don’t take this personally.  What Matt and Al said in this segment says more about them then it ever will about those with food allergies.  However, that being said, it is a bad example to set for others and I am worried that food allergies will continue to be marginalized. Is it because there was no sign on the buffet that said “contains gluten” and that is why they did not go after the gluten free diet? I have some insight into why I think this is happening.

In our gluten and allergen free cafe, I see people coming in every day claiming a gluten allergy and claiming food allergies.  It is work to try to figure out what we are really dealing with.  There are people who don’t like mustard so they declare it an allergy and have us shut down a kitchen line and keep everyone else waiting longer to be served. We serve them their meal without a pickle and we get an angry customer. It turns out that they just “don’t like” mustard and they wanted the pickle that is made with whole mustard seeds!  The difference is that we are equipped to deal with many allergies…mainstream restaurants are not. When I talk with other mainstream restaurant owners they say that just about every 5 tickets they are having an “allergy” flagged.  They don’t know which is an allergy and which is a sensitivity, so it causes many problems for them because they are not set up to deal with this on a regular basis.

The problem is that we have customers who come in for the first time who have minor food sensitivities or who are on an elimination diet and they claim an “allergy” too.  We have to determine what is what.  Our kitchen would need to be shut down and cleaned on every other order if we were not detectives at the front counter.  Trust me, we can usually tell the difference between food allergies and someone new with food sensitivities; but we still have to ask many questions to be sure what we are dealing with. Then, if needed,  we educate the customer about what we do and what is an allergy and what is a sensitivity.  Nothing makes us happier than when a customer comes in and says: “I may have food sensitivities and I am on an elimination diet and I need to avoid these foods right now”.  My thought bubble is : “great, and thank you for not faking a serious food allergy”.

On Mother’s Day I was talking to a nice couple from New Jersey and they said, “we knew nothing about food allergies until our child had a serious food reaction”. The awareness and the seriousness of food allergies is just not out there in the mainstream. My biggest fear is that this type of marginalization of food allergies will continue; making it harder for those with legitimate food allergies to be taken seriously.

We all have to do our part to raise awareness about the serious nature of food allergies.  We need to start in our own personal circles of influence via our facebook pages, twitter pages, schools, workplaces, etc.  Please join me and start spreading awareness today; let’s change the tide together! Below are signs and symptoms from FARE (Food Allergy Research and Education) for mild and severe symptoms. Also, it describes how a child might describe what they are feeling.

If you’re introducing a new food to your baby, keep an eye out for these symptoms:
  • Hives or welts.
  • Flushed skin or rash.
  • Face, tongue, or lip swelling.
  • Vomiting and/or diarrhea.
  • Coughing or wheezing.
  • Difficulty breathing.
  • Loss of consciousness.
  • Mild symptoms may include one or more of the following:
    • Hives (reddish, swollen, itchy areas on the skin)
    • Eczema (a persistent dry, itchy rash)
    • Redness of the skin or around the eyes
    • Itchy mouth or ear canal
    • Nausea or vomiting
    • Diarrhea
    • Stomach pain
    • Nasal congestion or a runny nose
    • Sneezing
    • Slight, dry cough
    • Odd taste in mouth
    • Uterine contractions

Severe symptoms may include one or more of the following:

  • Obstructive swelling of the lips, tongue, and/or throat
  • Trouble swallowing
  • Shortness of breath or wheezing
  • Turning blue
  • Drop in blood pressure (feeling faint, confused, weak, passing out)
  • Loss of consciousness
  • Chest pain
  • A weak or “thread” pulse
  • Sense of “impending doom”

Severe symptoms, alone or in combination with milder symptoms, may be signs of anaphylaxis and require immediate treatment.

How a Child Might Describe a Reaction

Children have unique ways of describing their experiences and perceptions, and allergic reactions are no exception. Precious time is lost when adults do not immediately recognize that a reaction is occurring or don’t understand what a child is telling them.
Some children, especially very young ones, put their hands in their mouths or pull or scratch at their tongues in response to a reaction. Also, children’s voices may change (e.g., become hoarse or squeaky), and they may slur their words.
The following are examples of the words a child might use to describe a reaction:
• “This food is too spicy.”
• “My tongue is hot [or burning].”
• “It feels like something’s poking my tongue.”
• “My tongue [or mouth] is tingling [or burning].”
• “My tongue [or mouth] itches.”
• “It [my tongue] feels like there is hair on it.”
• “My mouth feels funny.”
• “There’s a frog in my throat.”
• “There’s something stuck in my throat.”
• “My tongue feels full [or heavy].”
• “My lips feel tight.”
• “It feels like there are bugs in there.” (to describe itchy ears)
• “It [my throat] feels thick.”
• “It feels like a bump is on the back of my tongue [throat].”
If you suspect that your child is having an allergic reaction, follow
your doctor’s instructions and treat the reaction quickly.
Scroll down for a great poster you can copy and paste to your social media!
Learn more through FARE Click Here
child with food allergies

 

Things That Make You Go Hmmmm!

thingthatmakeyougohmmm

Funny Story #1: We all have those times when we hear something and can’t believe we heard it.  Then, we have no choice but to assume that the person is kidding.  Then, if that is not the case, you just play along and are left shaking your head. Our line-cook, Kendall, had just that type of experience last week. I hope this one makes you laugh too!

Kendall was working the front counter when a customer and a friend came in to eat.  The customer is gluten sensitive, and the friend had never been here before. He had no food restrictions whatsoever.  So, Kendall explained the menu to the friend (who was in his late 20’s or early 30’s), we will just call him “Tom”.  Tom decided on our Cheese Steak Sub. Kendall went over condiment choices with him and he rattled off everything he wanted on his cheese steak:

Tom: “Mayo, Lettuce, Tomato, Sauteed Onions…and can I get gluten on it too?”

Kendall: “No, I am sorry; as I explained before, the facility is free of gluten.”

Tom: “Yeah, I know; but I CAN have Gluten, can’t you just add it to mine?”

Kendall: “No, I can’t. I am sorry.”

Kendall shared a glance with the regular customer and a smile.  Kendall later told me that she could not believe it, she thought he was kidding. However, the look on Tom’s friend’s face definitely said that he was not kidding.

So, this is definitely the first time we have had a customer who thought Gluten was a condiment that you can add to a sandwich!  We all laughed until our faces hurt.  But, this is a great reminder of how little the general public knows about Gluten.

Serious Story #2:  Labeling Disaster at our Local Giant Food

A member recently posted on the Chesapeake Celiac Support Facebook page about Bourbon BBQ Sauce made by Giant…it makes a gluten free claim on the front of the label, but clearly has wheat as an ingredient in the soy sauce in it. The other issue is the Bourbon!  This is not allowed under the FDA Labeling. The law is that no ingredient that actually contains wheat, rye or barley can be used in a product bearing a GF Label, even if it contains less than 20ppm!  Hence, Gluten removed beers can no longer claim them to be GF because they can’t validate with testing that the Barley has been removed! (Schar products use a product called “codex wheat starch” that is processed to remove the wheat, so it is allowed, but they still have to say “contains codex wheat starch processed to remove wheat”.) So, you may be asking “how can this happen?”

There is no federal oversight; people can just do what they want until they get caught!  Pure ignorance on Giant’s part.  Here is the response Giant Food gave to the person who bought the product and inquired:

Irene, thanks for raising the question about this product. Our Own Brand’s Quality Team provided this explanation. Gluten is a general name for the proteins found in wheat, rye, barley and triticale. Thus, all products with wheat, contain some gluten. The Banjo BBQ Sauce contains soy sauce, which has wheat as a sub-ingredient. The wheat that is in the soy sauce, does contain gluten, but only a very, very small amount.

FDA mandates gluten-free labeling. In order for a product to be labeled “gluten-free”, it must have <20 ppm of gluten. This product has been tested for gluten, and not only does it meet the <20ppm threshold, but it actually contains <5ppm of gluten. Thus, we can guarantee that the product meets the standard to label the product “gluten-free”, even though it does contain very trace amounts of gluten.

We understand that this could be confusing to customers, and thus, in order to be 100% transparent, the supplier is working to reformulate the product to remove soy sauce. Post-reformulation, there will be no wheat listed in the ingredient statement and should reduce customer confusion. I hope this explanation helps. Should you have other questions about any of our Own Brand products please feel free to call the toll free number and our representatives will be glad to help.”

Oh, please!  That was a big lie.  So, if this is really true, why would they be reformulating it to remove the soy sauce?  Oh, and isn’t Bourbon made with Rye? Bourbon is 51% corn and the remainder is usually malted barley comprised of rye or wheat. There is no safe way to remove the rye, or at least verify that the rye has been removed.  So, the problem is the wheat in the soy sauce and possibly rye or wheat in the bourbon.  Those are my red flags.

Basically, Giant Food is telling their customers with Wheat Allergies and Celiac Disease that they don’t care enough about you to do it right.  They are also saying that when you catch us lying to you, we are still going to lie to you when trying to explain ourselves. They brazenly assumed that we all are stupid.

You still need to be vigilant out there and you need to understand the labeling laws yourself because there is no FDA oversight because the GF Labeling Law is VOLUNTARY not mandatory!

I won’t be supporting my local Giant Food any longer.  We had this issue a few years ago with a bourbon chicken that they were selling and claiming that all of their Deli Meats were gluten free.  They did not care then and they don’t care now.  This incident has been reported to Gluten Free Watchdog.

Great job Irene. Stay Vigilant Folks!

Public Perception Of Celiac/Food Allergies

restaurant-gluten-free-joke

We all get to that place of utter frustration when it comes to dining out safely.  We walk away shaking our head saying “they just don’t get it”. Why is it so hard to eat out safely and how can we educate the public in order to change this? Let’s explore our plight and several ways that we can change the public’s perception.

Those who have Celiac Disease feel this frustration but we need to remember how much easier it is for those with Celiac Disease (CD) or Gluten Sensitivity (GS) than it is for those with life threatening Food Allergies (FA).  If you have both; it can be next to impossible to dine out. Those with Autism experience this when they put their child on a gluten-free or other special diet.

I feel like the Celiac Community just wants it all and they want it now; not really understanding why it is so hard for a restaurant to safely feed them. (Keep reading, I will tell you the top 4 obstacles to safe food)  Many clearly expect every restaurant to be able to safely serve their dietary needs.  For those with severe food allergies, they know it is life or death for them, so they don’t make such a big deal about it and simply choose to go without because it is safer. Yes, it is hard if you have CD or GS but it is even harder to have FA and that is why those with FA don’t take risks dining out because most places really don’t get it.  Think about it Celiacs; if cross contamination could kill you, would it be worth all of the risks that you take when dining out?

Where is the awareness? In Maryland they passed a Food Allergy Bill, but it is only voluntary. Only 3 of more than 30k restaurants took the training! Mmmm, it seems like the serious nature of a Food Allergy or Celiac Disease is not getting through to the general public.

Then, last month, Ted Cruz (running for president of the US) made an uninformed comment promising that he would not support the military supplying Gluten Free (GF) MRE’s (Meals Ready to Eat) to those who needed them. MRE’s are often used when deployed in remote areas.  This comment hit close to home for me and shows just how ignorant the masses are about Celiac Disease and Food Allergies. (A person with a wheat allergy would need GF MRE’s). I thought to myself; how can anyone be so uninformed? Yet, as I pondered this, Ted Cruz is certainly not alone when it comes to his ignorance about Celiac Disease or Food Allergies.

On Sunday, a friend and customer, Ben Andrasik, stopped in the cafe for a meal and some treats for his kids.  Ben served two tours of duty with the military in Afghanistan and wrote a book about his struggle and survival without GF meals. It gave us a chance to catch up and chat about some things. We discussed the public perception and we both feel that biggest struggle we face is lack of public awareness or understanding of the seriousness of Celiac Disease and Food Allergies. (You can read Ben’s book here at our cafe, it is in our library and it is called Gluten Free in Afghanistan by Cpt B. Donald Andrasik. You will have a chance to win a copy of his book at the end of this post.)

Contrary to what you might think; you can serve in the military if you have Celiac Disease. They just don’t go out of their way to safely feed you.  However, the military will accommodate a person who chooses to be vegan. Mmmmm.

 

The Top 4 Obstacles to Safe Food:

-# 1 Lack of Education of the general public about the seriousness of Celiac Disease and Food Allergies. The general public only hears about people eating gluten free as a diet trendnot as the only prescription to treat Celiac Disease.  In my opinion, that area is where our Celiac non-profits are failing us. The general public does not think Food Allergies are serious until someone they love has an anaphylactic reaction and this is shocking to me.

Let’s explore some statistics in the chart below. Notice how many Americans are living with Celiac, Food Allergies and Autism. Then look at the other diseases and how many are living with them. The numbers are far less for the rare diseases, but we all know what those rare diseases are and would not diminish their legitimacy or the prescription given to those who suffer from them! Since when does the only “prescription” to treat a disease come only in a “pill” or “injection” form from a pharmaceutical company? Why does the lack of a “pill” make Celiac Disease and the Gluten Free Diet not a legitimate disease and treatment?

I put this graphic together back in 2010 and it is still relevant today with a few updates to it…but it is still shocking.

CDGSAutismAllergies Photo

Given the numbers above, you would think that Celiac Disease and Food Allergies would be a top priority in the United States, but they are not viewed as legitimate by the mainstream public! Lets look at the totals as compared to Type 1 Diabetes:

Celiac Disease: 3 Million plus  18 Million Gluten Sensitive  = 21 Million

Food Allergies: 9 Million Adults plus 6 Million Children      = 15 Million

                                                                                                   Total = 36 Million Total

Type 1 Diabetes:                                                                               = 3 Million Total

How did we learn about many of the above rare diseases? Were we taught about them in high school? No. Did we have a family member with one? Possibly.  Primarily, we learned what those rare diseases were by their non-profit organizations and foundations raising awareness in mainstream media; via ads in TV, mainstream magazines and newspapers.

Remember Jerry Lewis doing telethons every Labor Day weekend for Muscular Dystrophy?  We hear about ALS (Lou Gehrig’s Disease), who did not see the “bucket challenge” last year?  All of the above rare diseases have gotten the word out because their non-profit foundations are utilizing mainstream media in addition to marketing to those affected by the disease.

There are just as many people living with Celiac Disease as there are with Diabetes..many have Celiac too, but you would never know it when it comes down to the attention given to each! If Type 1 Diabetes could only be treated by diet and there was no insulin, you bet your “arse”  restaurants would be pandering to this population.  However, Diabetics have two Rx’s; diet and/or insulin. Diabetics control diet by counting carbohydrates & reducing sugar.  Sugar and carbohydrates are required to be disclosed on nutritional labels making it much easier for a person to manage their diabetes.  Yet, a Celiac must avoid Gluten, and is not required to be disclosed on labels. Mmmmm.

#2: Gluten is not required to be labeled or disclosed on nutritional labels. This is the main reason that mainstream restaurants struggle to feed Celiac’s safely! Yes, the Gluten Free Labeling Law passed; but it is not mandatory; it is voluntary only. In the US they only have to disclose wheat! Rye and barley don’t need to be disclosed and gluten can hide in many forms, natural flavors is one place. Mainstream products don’t need to tell you if there is gluten in them or not, they tell you if they want to!  In the US, they have to tell you if the recipe includes the top 8 allergens: wheat, milk, eggs, peanuts, tree nuts, soy, fish, shellfish. Did you notice that rye and barley are not on the required list? (In Europe and Canada this is less of a problem because they label gluten and many additional allergens).

The #3 Reason: Manufacturing companies don’t need to prevent cross contamination! Yes, you read that correctly.  They only have to tell you what is purposely put in the product and if it contains the top 8 allergens. They don’t have to tell you if they accidentally contaminated the product with any allergens or anything else when processing or packaging.  They are also allowed to use the term “natural flavors”; so they don’t give away their “secret” ingredients; which could be anything!

#2 and #3 are why mainstream restaurants can’t safely feed you!  Really, come on, why would you expect them to get it right given the above? Are you having a light bulb moment?

The #4 Reason: We are not being heard by the general public! Currently, our associations are only getting the word out in media that is targeted at those of us already living with Celiac Disease or Food Allergies! We will never be taken seriously if the mainstream public is not educated and the mainstream media is only talking about Gluten-Free Fad Diets rather than Celiac Disease &/or Food Allergies.

Open any GF/AF Magazine and you usually see an ad from one of our associations. However, you don’t see this type of ad in mainstream publications.  So, when a person running for president of the US is clueless about Celiac Disease and does not know that the GF Diet is the only Rx for it..that tells me our message is not being heard by the general public.

On the contrary; if Ted Cruz made a remark like that about diabetics and pledged not to provide insulin or a low carbohydrate MRE’s for diabetics in the military and did not know what diabetes was; we would all say he is clueless and not fit to run for president being so un-informed! The world knows about diabetes. The world and the mainstream media don’t know about Celiac Disease or the seriousness of it because our message is not being heard!  Isn’t that amazing when there are just as many people with Celiac Disease! (not to mention Gluten Sensitivity and Wheat Allergies)

How Do We Get the Attention Needed for Celiac and Food Allergies?

We can whine and complain about not being respected but that does us no good.  What we need to do is demand that our support associations spend some of our donations on a media campaign to get the word out into the mainstream. If you flip through a gluten free magazine or food allergy magazine you see ads for associations.  I would love to see those ads in Time Magazine, People Magazine or in major newspapers. They would just need to gear the ad towards the seriousness and symptoms, thus creating awareness.  By putting the advertising money into mainstream news media; the public will be educated about the seriousness of our plight. It will raise awareness and diagnosis rates! (The Autism community has done a great job about getting their message heard). Even my local Quest Diagnostics advertises symptoms of Celiac Disease and the blood test for it in a big poster in their waiting room.

Our dining out problems won’t be solved until there is a ODC Cafe, Deli, Bakery in every major city or if we change our labeling laws, manufacturing regulation and educate the public about Celiac & Allergens..

Beaver and Wally

“Gee, Wally, I wonder which one will happen first?

“Ah, come on Beaver, I am thinking more ODC’s!”

Without comprehensive changes in all four areas, it is useless. Example: the voluntary GF Labeling Law is not currently enforced because it is voluntary without oversight. Hence; General Mills recalled 1.8 million boxes of not really GF Cheerios.  Mmmmm.

-The general public must be educated about the seriousness of Celiac/Food Allergies.

-We must have stricter labeling; mandatory gluten disclosure and stricter food production laws in order to ensure safe food.

In the US, we united around the task of sending a man to the moon (my uncle was using a “slide rule”, before computers, to do the math in order to make it happen). Somehow, 50+ years later, we can’t unite around educating the general public or passing laws to serve safe food to those with celiac or food allergies.  I hear horror stories from customers who tell me about people saying “nobody had food allergies when I was growing up, they are just made up” or, “a little bit won’t hurt you”.  As I have said before, we can send a man to the moon but we can’t safely feed our people and that is just stupid!

How do we change this?  So, yesterday, when Capt Ben and I were catching up and discussing Ted Cruz’s comments we both agreed that the mainstream does not recognize Celiac Disease as the reason for the GF Diet. We can whine among ourselves or we can ask our associations to put some of our donations towards  a mainstream media campaign and get the word out to the general public!   With Celiac Diease Awareness Month coming up in May, Ben was kind enough to donate 10 books for me to give away for this blog post.

Here is how you win a copy:

Send me your creative suggestions on ways to get the word out and fix the 4 big problems:

  1. How can our associations get the word out to the general public about the seriousness of Celiac Disease and Food Allergies?
  2. What can each of us do to personally further our own cause by spreading awareness?

The 10 best suggestions will get a free copy of Gluten Free in Afghanistan! Email me at onedishcuisine@yahoo.com by Tuesday 4/12/16. Make sure you include your name and a way to contact you if 1 or more of your suggestions wins! (I will post the top suggestions in the next blog post)

Thanks Capt B. Donald Andrasik for your service to our country (a country who is unwilling to serve you a safe meal while you are serving us by defending our freedom)!  Gluten Free in Afghanistan is a great read and it should comfort you to know that Ben survived two tours in Afghanistan.

 

 

 

 

 

 

 

Tax Break for Special Diets?

Gluten and allergen-free meals cost about 242% more than their regular counterparts.  This is not a surprise to most of us.  The link below is a great video link to some information that may help you get some sort of a tax break on the price difference and shipping charges for these specialty meals.

An IRS Information Letter 2011-0035  affirms the tax break: “[T]he excess cost of specially prepared foods designed to treat a medical condition over the cost of ordinary foods which would have been consumed but for the condition is an expense for medical care.”

Watch video for more information and contact your tax professional.

http://www.dailyfinance.com/2015/03/02/gluten-free-income-tax-break/

My Thoughts on “Grain Brain”; by David Perlmutter, MD

Many customers, while dining in my cafe, have asked me what I thought of Grain Brain, written by renowned neurologist, David Perlmutter, MD.

First, I will say that the book is excellent and a must read for everyone, especially if you or your family are touched by Celiac, gluten sensitivity, autism, dementia, alzheimer’s, stroke or heart disease! Dr Perlmutter goes into great detail about the care and feeding of your brain.  Showing, through research, studies and clinical experience exactly how healthy carbohydrates; such as whole grains and sugar can cause dementia, ADHD, epilepsy, anxiety, headaches, depression and more.

I made some some notes while reading the book that you might find of interest. First and foremost, Dr Perlmutter believes that Gluten Sensitivity is the real issue at hand and that Celiac Disease is an extreme manifestation of Gluten Sensitivity.

Gluten Sensitivity:

-Celiac Disease is an extreme manifestation of gluten sensitivity; the most severe reaction to gluten.

-1 in 30 people have Celiac Disease as estimated by Dr Perlmutter, although experts say 1 in 200 or 1 in 131; many are not diagnosed.

-1 in 4 people are vulnerable to Celiac Disease due to genetics alone and those of northern European descent are more susceptible.

-A person’s genes determine gluten sensitivity or severity, meaning there is a very wide spectrum to it.

-Gluten does not just harm the gut, once the genes are triggered, sensitivity to gluten is lifelong condition that can affect the skin, mucous membranes and the mouth.  Gluten reactions can involve any organ in the body including the brain, even if the gut is fine.

-The brain is at great risk if a person is gluten sensitive.

-Food Sensitivities are usually a response from the immune system.  The presence of gluten basically disables the body’s immune system and it can’t fully support the body’s natural defenses.

-About 45% of people with ASD (autism spectrum disorders) have gastrointestinal problems. There is an increased prevalence of celiac in pediatric cases of autism, compared to the general population.

-People with Celiac Disease may be at increased risk for developmental delays, tic disorders, learning disorders and ADHD.

-Depression and anxiety are often severe in those with gluten sensitivity.

-He dispels the myth that all fat is bad for you. Low cholesterol can affect mood and put your brain at risk. Your brain needs fat and is made of fat.

-“Routine lab tests for Celiac Disease are not sensitive enough to uncover gluten sensitivity, so don’t bother with them”. (I take issue with this, you need to know if you have Celiac first, then if negative, look for gluten sensitivity. No wonder 83% of those with Celiac are said to be undiagnosed!)

-Inflammation is the cornerstone to brain disease. He goes into great detail about dementia and alzheimer’s disease and the role gluten plays along with sugar, statin drugs, strokes, diabetes and so much more. Much time is devoted to talking about how all carbohydrates; grains and sugar are causing us problems (inflammation) and has lots of studies and clinical experience referenced in the book. There is also great information in the book about vitamin deficiencies, leaky gut and more.

I think this book is a must read; or buy it on CD and listen to it on a long car ride. I think it is eye opening and saw so many of my health issues highlighted in this book;Grain Brain it has convinced me to tweak my GF diet a bit. (I can attest that gluten does affect the brain! Read my blog post about when I was “glutened” on vacation.)

Food Reactions; Know Which Type You Have!

Food Reactions; Know Which One(s) You Have!
On New Years Eve, my friend and I were talking about food allergies and reactions and I was surprised at how much she really did not know about the different types of reactions to food.  So I wrote about this in my January 2015 newsletter and I have transferred this to my blog.
There is a lot of misunderstanding about food reactions, in providers and patients or, from my point of view; from our customers.  Many come in here and just don’t know what they have.  I am not a doctor and you should listen to your doctor, but in our restaurant we see so many people who are just self diagnosing and that is scary. Please see a doctor. What we do here at One Dish Cuisine Cafe, Deli and Bakery is make safe food for those with Celiac Disease, Gluten Sensitivity, life threatening Food Allergies and EoE.
Below, I  will briefly explain the differences between the different food reactions and urge you to get tested when you are not sure what your issue is.  I will use my own situation to highlight the differences for you.

1) Autoimmune Response; Celiac Disease: This IgA autoimmune response can cause more than 300 signs and symptoms. Celiac Disease is the most common condition that falls into this category.  Basically, there is an autoimmune response to gluten and gliadin which can damage the intestines.  Testing for this is done by a Gastroenterologist through blood work and/or small bowel biopsy. I think you should have both.  10-20% of Celiacs test negative on blood work and positive on biopsy.  See a gastroenterologist who knows the guidelines for diagnosing Celiac Disease and get tested before going on a gluten free diet!  EoE and Celiac Disease and Dermetitis Herpeteformis (DH) are good examples of this and I have Celiac Disease and DH.

2)Food Allergy: Type I immediate IgE hypersensitivity immune response: This reaction typically occurs very quickly (minutes to hours) after eating an offending food; symptoms can be mild or severe. Food allergies can cause anaphylaxis (stopping breathing and death) but they may also experience itchy lips/tongue/throat, stuffy nose, headaches, belly ache, diarrhea, gas, bloating, skin reactions, and sudden fatigue. One mild reaction does not mean the next one will be mild! Testing is typically done through skin tests or IgE blood tests by a doctor/allergist. The majority of food allergies have a quick onset reaction.  If sour cream causes immediate diarrhea, or strawberries make your  lips swell or peanuts close your throat – you are not going to easily forget that because the symptoms occur so quickly and are severe.  IgE food panels can be run to help patients when it’s more difficult to figure out which food is causing their reaction because some may have multiple allergies. IgE testing is run through any standard laboratory and is ordered by a doctor/allergist.

I have an IgE allergy to Milk.  I was always told by doctors that I just had a severe lactose intolerance.  When I was not getting better following my GF Diet in the 90’s; my GI decided to refer me for food allergy testing.  I saw a doctor/allergist and they did skin testing for lots of allergies. When I ingest milk products, pretty quickly, the inside of my ears start to itch, my eyelids swell and I itch all over, followed by severe cramping and pains in my stomach and sometimes I start to sweat and can get irritable. If I have baked cheese or milk, the reaction is much less severe. I am lucky,  but this does not mean an anaphylactic reaction will never happen.  I know that mild reactions can sometimes become severe. I have a similar reaction to sulfites and nitrates, but more of an itching response.  With caffeine it is pretty immediate stomach pain and then sometimes I get hives.

Medications: I have also had immediate reactions to some Medications; Biaxin, Reglan, and Morphine.  For example, with Biaxin I had a less severe reaction to Milk (in the form of lactose) that is used to bind the drug together.

-In 2005 I was given Reglan to settle my stomach before going under anesthesia. I had a severe reaction and was given adrenaline/epinephrine. I am not sure what ingredient I reacted to in the Reglan because the hospital could not tell me what was in it, but they were adamant that I never, ever, ever take it! 
-In 1995 I was given Morphine while in the hospital for gall stones and kidney stones. I had a severe reaction; was given adrenalin/epinephrine to counteract the reaction and was told to never allow anyone to give me Morphine again.  I was really glad that I was in the hospital when I had those reactions and I definitely experienced the “impending sense of doom” that is often said to occur. 
-Codeine was not as severe; it made me itch all over and vomit. 
-Synthroid was prescribed for my Hashimoto’s Thyroiditis and I kept telling my doctor it was making me sick and I was told that there was nothing in it to make me sick. I did my own investigation and found out I was reacting to the lactose used in the pill and had to switch to the generic form made without the lactose. The severe stomach pain and itching ended immediately.

These are examples of immediate reactions.  The problem with medications is that you often have to call the manufacturer to figure out what is in the medication because they don’t have to label medication like they label food.

3) Non-immediate (delayed) IgG & IgA response; known as a food intolerance or food sensitivity:  This is very different from an immediate IgE food allergy response because symptoms may not show up for hours or days; which makes it very difficult to figure out exactly which foods are causing which reaction in the body.  Symptoms of IgG food intolerances/sensitivities include: sore throat, stuffy nose, congestion, headaches, belly aches, constipation, diarrhea, gas, bloating, hormone issues, foggy head, headaches, weight gain, fatigue, joint pain, depression, behavior changes, anxiety, and skin issues.  This is where IgG and IgA food sensitivity testing comes in.  Many doctors are not familiar with this type of reaction because it is not always obvious or life threatening and it is harder to diagnose and some delayed IGA reactions can be very serious; such as EoE!

I have minor delayed reactions with Oats, Corn, Quinoa, Millet and Hemp…I have a gluten like reaction to these, or what I would call a “cross reaction”.  I did strict elimination diets to figure this out. Blood tests for food sensitivities (IgG) are more likely to be run by functional medicine or non traditional doctors and they are not usually covered by insurance.

We have seen a huge increase in customers with food sensitivities or intolerances and they usually come in and claim a food allergy, it is not the same thing folks! There is some conflicting evidence on the comparison of IgG versus IgE and the testing behind it.  Note: being allergic to a food doesn’t mean you are intolerant and being intolerant does not mean you are allergic.  IgG testing is often done by alternative practitioners and is said to diagnose inflammatory responses to foods but those tests are not validated by the FDA and therefore this type of testing is often not covered by insurance.

What is the bottom line here?  Know the difference between them:

-Celiac Disease: diagnosed via blood tests and endoscopy with intestinal biopsy done by a Gastroenterologist. Dermatitis Herpetiformis: itchy skin rash that is the very specific IgA Skin Manifestation of Celiac Disease, diagnosis is done via skin biopsy by a Dermatologist.

-Gluten Sensitivity: if you are negative on the above tests for Celiac Disease but have symptoms when you ingest gluten. Diagnosed by Gastroenterologist.
-Food Allergies:  severe and possibly life threatening IgE food reactions diagnosed by a doctor/allergist who will perform IgE Testing because severe reactions mean you should be carrying an epi pen. In the case of EoE, the patient may be referred to Gastroenterologist for biopsy of the Eosiniphil in the Esophagus.
-Food Sensitivities: IgG blood work, stool samples, saliva samples, etc.; are often done by alternative medical practitioners for low level food sensitivities that are said to cause inflammation in the body. The tests are often not covered by insurance because the tests are not validated or approved by the FDA yet and they don’t in any way determine if you have Celiac Disease or Gluten Sensitivity; you need to see a Gastroenterologist for that.  There is no such thing as a “Gluten Allergy”; you would have Celiac Disease or Gluten Sensitivity or you have and IgE Allergy to wheat, rye and barley!
*To see what those with IgE food Allergies are at risk for and what severe reactions look like, please watch this video: “An Emerging Epidemic: Food Allergies in America”.     http://www.foodallergy.org/emerging-epidemic#.VNkA_C79x_g
So, when you come in to see us for a meal,  we would really appreciate it if you would please use the appropriate terminology. Thanks!