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/

Father of 3 Food Allergy Kids Created App to Find Allergy Friendly Restaurants

AllergyEats is the leading web based guide to finding allergy-friendly restaurants nationwide. I had the pleasure of interviewing Paul Antico. He shares why he founded the site and how he handles dining out with three children with multiple different food allergies and how he feels mainstream restaurants respond to food allergic diners.

What inspired you to found the AllergyEats Website?

About 10 years ago, my wife and daughter were out of town, leaving me and my 2 food-allergic boys to enjoy a “guy’s weekend.”  I wasn’t as well-practiced in managing my kids’ food allergies as I am now, though I knew how to protect them (and, of course, how to use an epinephrine auto-injector).  On Saturday night, I took the boys out to eat around 7PM (first mistake – prime time).  We went to one of our “go-to” restaurants, but the wait was 75 minutes, so we moved on.  At our second “go-to,” the wait was about an hour.  Same as our third.  We didn’t want to wait that long anywhere.  Unfortunately, I had run out of “go-to” restaurants and realized that I wasn’t terribly comfortable determining on-the-fly if a restaurant could accommodate our boys or not.  We ended up driving for about 2 hours – the boys crying in the back of the car – until we ended up at a “greasy pizza joint” that had egg-free pasta and could serve both my kids.  But as I was driving, and reflecting on the many times my family has gone an hour or two trying to find a restaurant we’d be comfortable at – be it in a big city like New York or a smaller town like Lack Placid – I kept saying to myself “I wish there was a guide! I wish there was a guide!”  Being in the business world for 15 years, at that point, I realized there was an unmet need and a market of food-allergic diners and their families that really needed such a guide.  So 2 years later, when I left my job in the financial markets, I decided it was time to start AllergyEats and fill that void.

What allergies do your children have? 

I now have 5 children, 3 of whom have food allergies.  My 19-yo son has had a tree nut allergy his whole life, experiencing 2 anaphylactic events (not including the few we didn’t understand before he was diagnosed – we got lucky!).  My 16-yo daughter has no food allergies.  My 14-yo son currently has allergies to tree nuts and sesame.  He has outgrown eggs entirely – baked and raw – and even outgrew peanuts.  He also has EoE (eosinophilic esophagitis) that reacts to dairy.  My 9-yo son has no food allergies.  And my 7-yo daughter has had an egg allergy her whole life, with – so far – no sign of outgrowing it.

What is the main goal of the AllergyEats website and app?

There are two primary goals of AllergyEats.  The most important, of course, is to provide a valuable tool to the food allergy community that hopefully makes the dining out process easier and more comfortable by providing them with crowd-sourced information showing which restaurants have been better choices than others for food-allergic diners.  The secondary goal is to reward those restaurants that make the effort to properly accommodate our community and thus incent other restaurants to take the appropriate steps themselves.

What is the biggest challenge that you see facing people with food allergies who want to dine out?

The biggest problem is accepting that there is ALWAYS risk – no restaurant is perfect (though One Dish Cuisine may cause me to re-think that) – and making the decision about whether you can accept that or not.  It’s not easy – anaphylaxis can be terrifying, even when you know you have your epinephrine with you.  Of course, you want to minimize your risk by choosing an appropriate allergy-friendly restaurant, which is where the AllergyEats app and website come in.  And, most importantly, YOU have to do your part by: a) never dining out without epinephrine, b) ALWAYS disclosing all your allergies to your server (and possibly the manager or chef), and c) visually inspecting your food as best as possible before eating it.  I’ve found that the “bad events” that happen at restaurants usually involve a breakdown of responsibility by BOTH the restaurant and the diner.  We need to take care of our end of the bargain, so those 3 points above are critical.

Are mainstream restaurants taking food allergies more seriously than they have in the past?

Absolutely.  It’s becoming harder and harder to ignore with so many restaurant diners disclosing food allergies, and even the stingiest of restaurants/chains will eventually understand the spending power of the food allergy community and those they dine with.  I find that smaller, nimble chains seem to be on the front-end of the wave.  Many independents are there too.  The laggards tend to be larger chains, though that is by no means universal.  AllergyEats publishes a list of the Top 10 Allergy-Friendly Restaurants in America each year (coming at the end of February this year), and you can see that there are large chains that do “get it”, though the average score – from AllergyEats users themselves – is generally much higher for the smaller chains.

What are the biggest obstacles a restaurant has to overcome if they want to provide allergen safe meals?

The biggest obstacle is also the simplest – commitment.  It truly is that easy.  Whether the owner of an independent restaurant or the CEO of a chain, that individual’s attitude toward accommodating food-allergic diners will set the tone for all employees.  The training is easy.  The financial burden is minimal.  The disruption to operations in making appropriate changes is almost nil.  So it all comes down to commitment.  Find me an owner who cares about food allergies and I’ll show you an allergy-friendly restaurant.  The reverse is also true.  Find me a CEO who pooh-poohs food allergies and I’ll show you a chain that isn’t safe for our community.

Is there a way for mainstream restaurants to be trained in handling food allergies?

Absolutely.  There are very basic programs online that, while they won’t make a restaurant very allergy-friendly, they will incrementally increase the knowledge of a restaurant’s staff.  But there are also bigger, all-encompassing programs as well for those restaurants that are ready to make the all-in commitment.  The one that is making the most headway is AllerTrain.  AllerTrain does on-site training and well as train-the-trainer programs for larger chains.  They are training restaurants, colleges, entertainment venues, and more.  They do have online modules as well, but the most comprehensive training is provided face-to-face, generally onsite.  Outside of AllerTrain, there are independent trainers as well.  And many restaurants develop their own programs from the knowledge or experience of key employees.

How many times a week do you dine out with your allergic children?

We don’t shy away from dining out.  When we’re home, we usually go out about once every two weeks, though about once each week in the summer.  However, we travel a lot.  We have family in 4 different cities, we like to vacation, and our kids – like so many others – are involved in a ton of activities, some of which have us doing overnight travel.  We also now have to visit our oldest son in college!  When we travel, we eat out most nights.  So I guess my best estimation is that we eat at restaurants probably 50 times a year.  We probably order in another once per week.  And while we certainly have our “go-to” restaurants at home and in some of our destinations, we do like to explore and gain some variety where possible.  So, using AllergyEats of course, we find new favorites as we go.

How do you handle vacations with three of your five children having food allergies?

We’re old pros at this!  After 19 years, we’ve developed a routine.  Really, though, we generally do not have problems dining out.  Using AllergyEats, we do our homework in advance.  Sometimes we have to take a flyer on a restaurant that’s not yet rated on AllergyEats.  Either way, we periodically come across a restaurant that we just don’t feel comfortable can keep our kids safe and we politely leave before ordering.  But that’s rare and we no longer have to search for an hour or two to find a restaurant like we used to.  We find most restaurants want to accommodate our food-allergic kids, so we just have to work with them regarding what they have, what is safe, and how to prepare it safely in the kitchen.  I’m happy to say that in all our years of travel and dining out, “the system” (the dual responsibility of the restaurant and ourselves) has only broken down once, exposing my middle son to dairy.  And the mistake was 100% on our end.  Certainly, other restaurants have made mistakes, but not without either us or them catching the errors in time.  So think about it – our family has had hundreds of meals from restaurants without a single mistake on their part that hasn’t been caught!  Of course, our epinephrine auto-injectors are with us wherever we go and we usually have some basic food like soy nut butter and crackers in our room for a quick, safe snack.

How do you educate schools to keep your children safe?

Fortunately, I haven’t had to be a pro at this.  The primary/middle school my kids have attended from age 3 through 8th grade, Inly School in Scituate, MA, is extremely allergy-friendly.  They won an award from FAAN (Food Allergy and Anaphylaxis Network), one of the precursors to FARE (Food Allergy Research and Education), in 2011 for food allergy excellence.  All staff members are diligently trained and the processes and procedures in place are great.  The school has become known for this and actually brings in some students BECAUSE they are so allergy-friendly.  As the kids have moved onto High School and now College, we’ve found that these schools generally have a program and set of rules in place.  They aren’t as safe as Inly School, by any means, so our kids have to be smart about keeping their epinephrine with them, asking the right questions, taking proper precautions – basically, they have to do what they’ve learned and seen my wife and I do for all these years.  And so far, so good.

How do you handle it if there is an accident and one of your children needs to use their Epi-Pen?

Fortunately, in all these years, we have only had 2 incidents that needed an epinephrine injection.  The first was a tricky delayed onset reaction.  I say tricky because our kids react to many of their allergies without anaphylaxis, needing only Benadryl to ultimately feel better.  In this case, my oldest (with a tree nut allergy only) ate a chocolate ball at a nut-free event.  His throat started to itch, as it does when he has non-dangerous oral allergy syndrome from exposure to some fruits, but this one was a little worse.  Regardless, with us thinking the food was nut-free and the signs pointing to OAS, we went with Benadryl.  Unfortunately, the symptoms weren’t improving.  One could definitely say we should’ve used the auto-injector then (if not earlier), but we actually tried another dose of Benadryl.  Same result.  I prepared my son until he eventually made the decision for us.  “Hit me.”  Boom.  Immediately, he felt better.  (Turns out he had a biphasic reaction – a second anaphylactic event in the hospital – so we were very lucky we finally took the appropriate action.)  We believe, by the way, that the chocolate ball was cross-contamination with tree nuts.  A year later, while teaching at a farm camp, this same son thought he might have accidentally ingested something with tree nut residue in it.  He wasn’t sure, but was feeling symptoms.  Realizing how easily and quickly the epinephrine auto-injector worked the last time, he didn’t hesitate to use it himself.  In hindsight, and while we can’t be sure, I don’t think he was having an allergic reaction – I think anxiety symptoms made it hard to tell.  Yet, either way, he did the right thing.  When in doubt, use the epinephrine.  It is generally considered a very benign treatment that can rarely do any harm to you.  And do not wait as long as we did in that first event.  Anaphylaxis can spiral out of control quickly, even if delayed, and getting epinephrine in the body early is critical.

Do you blame yourself when an accident happens? What emotions do you go through?

Of course I do.  Isn’t that true when anything goes wrong with one’s kids?  In fact, forgetting food allergies for a second, I’m constantly wondering how ALL my past and current actions are affecting the lives of my kids.  (I hope that just makes me a good father and not a lunatic!)  However, I understand that I’m human and mistakes happen, so while I feel terrible and guilty, I apologize to my son or daughter and move on.  They understand that these things happen too.  It stinks, but it’s life – and we all need to accept it.

What would be the ideal dining out situation for you and your family and do you ever think you will feel totally comfortable dining anywhere.

Fortunately, we’ve had many, many very comfortable restaurant meals, but that is also a product of our long experience.  We’ve been doing this long enough to know the best questions to ask and to “read” the staff’s responses well (verbal and physical).  In the optimal case, we would find a restaurant known for their ability to accommodate food-allergic diners (yes, you know where we find them), have a conversation with the staff that shows a real proactive zeal for wanting to satisfy us, and have them proactively reaffirm all the steps they took when the bring the meal (separately or clearly marked) to our table.  That all said, we do still have some “on edge” experiences where we believe the restaurant can accommodate us, but we’re not entirely secure with their food allergy knowledge.  In those cases, we usually have to walk through their menu and their process in the kitchen step by step to ensure that – even if they don’t have broad food allergy knowledge – they will be able to make safe meals for our kids.  Our epinephrine is always with us!

Do you think the general public will ever have a thorough understanding and respect for the serious nature of food allergies?

I hope they never have to – because that would mean a cure is found before broad public acceptance has a chance to take place!  But realistically – because unfortunately we have to accept the fact that a cure is nowhere in sight – yes, I do think the general public will eventually have a healthy respect for the seriousness of food allergies, if not a broad understanding.  Let’s face it, most people in their 40’s and younger today probably know someone with food allergies.  And for the younger cohort in particular, once they actually get to know someone with food allergies, they tend to be compassionate and accept the seriousness of food allergies.  Further, recognize the surge in food allergies that has taken place in our kids over the past 20 years.  Logic would suggest that almost all people 20 years old or younger have grown up with or gotten to know friends with food allergies.  Our kids are more accepting than our older generations; thus, I think the trend is our friend and broader acceptance is taking place every day.

What do you see as the biggest obstacle to widespread respect and understanding of food allergies?

Time.  The younger generation gets it, and each day they become a larger part of the population.  The older generations are also coming into contact with food-allergic individuals more and more each day, with many of them accepting it as well.  I’ve seen the acceptance improve dramatically over my family’s 19 year journey.  It will continue.

What advice can you give to parents of a child with newly diagnosed food allergies?

Do your best not to panic by recognizing that millions and millions of parents have been in your shoes.  Yes, this can be terrifying – we all love our kids more than ourselves – and it can feel overwhelming, but as you start this journey you’ll soon learn that it’s manageable, even if not always (or ever!) comfortable.  Each step has it’s challenges – shopping for safe food, eating food made by a family member or friend, dining out, starting your child in school, going on vacation, having your kids eat out with friends, eventually going to college, etc. – but you take each of these steps one at a time.  Support groups like Kids With Food Allergies Foundation (www.kidswithfoodallergies.org) can be a big help in the beginning, as can local support groups, and online forums.  Of course, finding friends and acquaintances who have been down this path can be extremely helpful as well.  Realize too that, as you proceed down this path, you need to teach your kids all along the way, preparing them for their ultimate independence.  Of course, rule #1?  Never find yourself without epinephrine nearby.

What do you see in the future for AllergyEats?

For now, our focus continues to be on attracting new visitors to our app and website, and building our database of ratings.  A lot of people in this world aren’t online raters in general (I’m one of them), but we have to impress upon these individuals that our food allergy community is all in this together and that each new rating someone adds on AllergyEats makes the app and website even more valuable for future food-allergic diners.  (And yes, I AM a rater on AllergyEats, of course.)  Like many other small businesses in the food allergy space, we’re also trying to execute a business model that can generate a profit (or at least breakeven) since we’re not a non-profit and can’t attract grants and funds in the same way.  If we’re successful in doing so, the opportunity for AllergyEats to expand both vertically and horizontally is awesome.  Our platform lends itself to many, many other options.

I am so grateful that Paul has developed this site to help us find allergy friendly dining spots. Please check out the site!  Click Here for AllergyEats website

paul-antico

Nima Sensor, Sunflower Cafe to Close, New Day GF Hopes to Re-open

This week I tell you all about the new Nima Sensor and how it works.  Three weeks in a row I am having to tell you about gluten-free places closing; The Sunflower Cafe/Bakery in Williampsport, PA will close on October 30, 2016. Lastly, I will share some news about New Day GF hoping to open in a new location!

The Sunflower Cafe/Bakery in Williamsport, PA will close it’s doors. I was informed by one of my facebook followers last week and I immediately went to Sunflower Cafe’s facebook page. I  went to her page and read back about one year; I started crying.  She was very open about her struggles; talking about selling furniture to pay her business loan and trying to do it all by herself because she could not afford to pay help. Wow; she had 5 star ratings.  Let’s look at this situation by looking at the numbers:

Population of Williamsport, PA: 29,349 x 1.3% = 381 Celiacs

-This means every Celiac and their friends/family would need to eat there at least once a week. I know from experience that this did not happen.  Looking at this population statistic, I know it could not work because there are no large cities nearby. I am thankful to Sunflower Cafe & Bakery for being a safe haven for those with Celiac Disease.

Everyone is talking about the new Nima Sensor: Dining out in restaurants full of gluten is a calculated risk that many take way too often and pay the price later. Now you can test your food before you eat it! This is great news if you have Celiac Disease or a Wheat Allergy. Nima Sensor is a portable sensor that tests liquid and solid foods for the presence of gluten (wheat, rye and barley) in about two minutes. Nima hopes to be able to test for top 8 allergens in the future! My thoughts are:

  1. If you eat out a lot, you can make sure your food is safe before you eat it.
  2. If people detect gluten in their meals it will drive them back to the completely GF places who are doing it right!
  3. Cost for the device is $279.00
  4. Refill test capsules cost $60.00 for 12 capsules or $5.00 per test.
  5. Pretty pricey; add $5.00 to the price of your meal.
  6. Your meal is probably cheaper at the dedicated GF place; you don’t need to test it.
  7. If you must eat at a regular restaurant; a  $5 test is cheaper than taking days off work.
  8. If it detects gluten, the restaurant probably won’t refund your meal; especially if they have a disclaimer on their menu!
  9. Level of detection is to 20 ppm (parts per million).
  10. I won’t be getting one right now because I am always at One Dish Cuisine!

Click Here to learn more

Go Fund Me Page for New Day GF:  As I told you two weeks ago; this 5 star rated Gluten Free and Peanut Free cafe  was in a small town, too far out from St Louis, MO and had several competitors that had opened up in St Louis.  Last Friday they posted that they identified a new location just outside of St Louis and were awaiting “capital” or financing. It looks like they were not able to obtain financing. A “Go Fund Me” page was posted to their facebook page. They need to raise $300,000 in order to re-open. I hope that they can raise the funds, re-0pen and prosper in the new location.

 

 

Neurological/Pshyciatric Manifestations of Celiac/Gluten Sensitivity

What do Depression, Mood Disorders, ADHD, Gluten Ataxia, Autism, Neurological Issues, Migraine Headaches, Epilepsy, Seizures, White Matter on Brain and Schizophrenia; have in common? According to NIH (National Institute of Health), all of the above are also symptoms of Celiac Disease and Gluten Sensitivity which can affect adults and children!

I get asked about this so often by customers, at least once or twice a week, that I thought I would write about this in depth. Some are having multiple neurological complications from their Celiac or Gluten Sensitivity or their child is exhibiting ADHD Symptoms and stomach aches but has not been tested for Celiac Disease. (I am Celiac and also have Ataxia (Neurological symptoms; loss of balance & coordination, fumbled speech and I exhibit signs of ADHD-can’t concentrate when exposed to gluten). The shocking thing is that many in the medical community are not investigating the gluten connection by testing for Celiac Disease first! Often a child or adult are just put on ADHD medications or anti depressants and just sent on their way. Often the medicines are just addressing some of the symptoms; not the actual cause! The result is ongoing pain and suffering because the true condition is NEVER addressed. The good news is that NIH (National Institute of Health) has put solid information out there for our physicians and us to see!

First we need to understand the difference between Celiac Disease and Gluten Sensitivity. Then we will learn that psychological and neurological issues can be preset in either condition. NIH has some great information about this and will clear up any question that you or your medical provider have about the validity of these symptoms. Finally, I give you a link to these neurological and psychological symptoms; which are sometimes the only symptoms that an adult or child actually presents with. (Yes, many don’t even have any gastrointestinal symptoms or stomach aches!)

First, read this, all of it. Second, if any of this applies to you or you child, get yourself or your child tested for Celiac Disease (while still eating gluten) by a gastroenterologist who is well versed in Celiac Disease.

Celiac Disease (CD) affects about 1% of the population (about 1 in 130) and gluten sensitivity affects about 6% of the population. Even with all of the knowledge that we have now, it is believed that as many as 85% of cases of CD go undiagnosed. CD is dependent on an autoimmune reaction to gluten (the protein found in wheat, rye and barley) and is usually characterized by intestinal symptoms. Those with gluten sensitivity (GS) don’t have intestinal damage (villous atrophy) or antibodies for CD but can test positive for antibodies to gliadin. Those with CD and GS can present with many neurological and psychiatric symptoms. However, gluten sensitivity remains under-treated and under-recognized as a contributing factor to psychiatric and neurological manifestations.

In CD, the classic symptoms typically include abdominal bloating, steatorrhea (excretion of abnormal quantities of fat due to malabsorption) and weight loss. Some just present with a rash that looks like eczema, but is really the skin manifestation of Celiac Disease known as Dermatitis Herpeterormis (DH). However, there are too many symptoms to list here; so a link will follow. Diagnosis is confirmed by testing for a number of different antibodies including anti-endomysial antibodies (EMA), anti-tissue transglutaminase antibodies (tTG), and anti-gliadin antibodies (AGA).  We understand what causes the intestinal damage and the genetics related to CD.  Those genes are HLA-DQ2 or HLA-DQ8 and their other versions.

There are more than 300 signs and symptoms of CD. Click Here for List. This list is great because it describes symptoms as they affect different body systems and there is also a list of how children may present with Celiac Disease (that list is at the bottom of the link). Not everyone presents with the same symptoms..some just have bloating and constipation and stomach aches. Some just are fatigued, irritable and are moody or present with Autism or ADHD like symptoms. The intestinal biopsy used to be the gold standard.  Now there are 5 criteria for a Celiac diagnosis. Those with GS often have the same symptoms as those with CD.

Five Criteria for Diagnosing Celiac Disease and someone only has to have 4 of the 5!

  1. The presence of signs and symptoms compatible with celiac disease.
  2. Positive serology screening (high serum levels of anti-TTG and/or EMA).
  3. Presence of the predisposing genes HLA-DQ2 and/or –DQ8.
  4. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease.
  5. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.

Click Here for More     Click Here for 4 of 5 Rule

People with GS would not fit into less than 4 of the 5 categories. GS is a diagnosis of exclusion; this diagnosis is given once CD and wheat, rye or barley allergies are ruled out. This means all of the above testing was done while the patient is still consuming gluten and did not meet 4 of the 5 criteria for CD. Then the patient is put on a Gluten-Free diet.  If symptoms resolve; you are given a diagnosis of gluten sensitivity!  (There is some evidence that GS is just an early form of CD.)

Neurological/Psychiatric complications of CD have been known to the medical community for over 40 years. Meanwhile, GS sensitive patients also have many neurological and psychiatric complications. However, based on the lack of intestinal involvement, the neurological and psychiatric complications may be the prime presentation in patients suffering from GS! Therefore gluten sensitivity may easily go unrecognized and untreated.

Studies have shown that about 22% of  patients with CD develop neurological or psychiatric dysfunction and as many as 57% of people with neurological dysfunction of unknown origin test positive for anti-gliadin antibodies. Neurological and psychiatric complications observed with gluten-mediated immune responses include a variety of disorders.

From 1953 to 2011 a PubMed literature search located 162 original articles associating psychiatric and neurologic complications to celiac disease or gluten sensitivity!  36 articles for seizure disorders, 20 for ataxia and cerebellar degeneration, 26 for neuropathy, 20 for schizophrenia, 14 for depression, 12 for migraine. There were up to 10 articles each for anxiety disorders, attention deficit and hyperactivity disorder (ADHD), autism, multiple sclerosis, myasthenia gravis, myopathy, and white matter lesions.

However, the  vast majority of research to date has not looked at CD and GS independently, so the true prevalence of the neurological/psychiatric complications with each is hard to pin down. It does call attention to the fact that GS and CD are different gluten-mediated immune responses that may be the cause of patients presenting with a host of psychiatric and neurological complications.

For more information on the symptoms listed at the top of the article (NIH) please use this link. It goes into detail about each neurological and psychological manifestation, just click on link and scroll down, good stuff in here..! Click Here for NIH Info

 

 

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

 

 

“Grilled Cheese; Hold The Peanut Butter?”

Most of you have already heard about the recent disaster with Panera serving a grilled cheese and adding peanut butter to it; despite the customer disclosing a peanut allergy. This is very unfortunate and it defies rationale. I have thought and thought about this situation and I was at a loss for words.

Paul Antico to the rescue! Paul is the founder of Allergy Eats and is father to several children with multiple food allergies and works tirelessly on behalf of the food allergy community.  Without a doubt, I have to say that I agree with Paul’s take on this and could not have said it better myself. This is a must read if you have food allergies or celiac disease.

The bottom line is this; what what happened and what can we learn from it? Paul lets you know in his blog post titled: “Panera Food Allergy Disaster: Lawsuit and What Went Wrong”

We can learn a whole lot!  On that note…take it away Paul….  Click here to read!

To check out Allergy Eats guide to finding allergy friendly restaurants Click Here

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Panera Grilled Cheese