How The Media is Making Things Worse For People With Celiac Disease

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As you know I have Celiac Disease and was diagnosed 3.5 years ago after a long myriad of complications. I have been gluten free since and have not looked back.  When I was first diagnosed and was weeding through information about celiac disease and the gluten free diet - in all honesty not many people knew what I was talking about.  Now almost 4 years later I have a strong knowledge base on how to purchase and prepare safe food for myself and my family.  For that I am thankful - however I wish other people (ESPECIALLY the media and the food service industry) knew what they were talking about.

I am all for raising awareness of Celiac Disease - the more known the easier it will be for others to get their proper diagnosis, quicker and the more safe options will be available for individuals and families with celiac disease.  What I see happening in mainstream media recently is a lot of dangerous misinformation and belittling of the seriousness of this disease. 

First started with an article posted on Reader's Digest website titled "New Ways To Just Say No To Desert" written by Meaghan Cameron.  The last paragraph of the article was very disturbing to me:

What’s a diet devotee to do when breath mints, gum, polite refusal, cleaning products and excessive condiments fail? Echlin hints at this at the end of her column when she says that the best desserts should be eaten. Why attend a dinner party if you don’t plan on eating what’s served? That said, "a host will understand if the dieter has just had triple bypass surgery or is suffering from gestational diabetes." The final way fervent dieters haven't tried is a simple way to shut people up: Chalk it up to an allergy or condition. Gluten intolerance, Celiac disease, allergies, lactose intolerance and diabetes will get you out of eating just about any dessert.

The article has since been removed from Reader's Digest website after the reaction it received from the gluten free and celiac disease community. The average person might not see anything wrong with it - just being funny, but here is why it is DANGEROUS:

Telling people to pretend they have celiac disease to avoid having to eat a slice of pie belittles the seriousness of this disease for the rest of us. Imagine if everyone did that - how people would then start to roll their eyes at the idea of celiac disease and fluff off the need to eat gluten free. If I went to a restaurant and asked for a salad with no croutons because I had celiac disease - the server could just assume I was on a low carb diet and just pick off the croutons. That would leave me sick for months. 

There has been a lot more coverage of gluten free diet recently because a famous former USA Presidents daughter has requested her wedding cake be gluten free. This has brought some good coverage because it is showing that gluten free doesn't mean ugly or bad tasting food. It has also brought a lot of coverage about gluten free diet being the new celebrity diet 'fad'.  Yes this brings on a new slew of gluten free products but the problem is these products are not being produced in a dedicated facility. People on the diet to 'lose weight' don't have to worry about the cross contamination issues and that is a large issue in food safety for people with celiac disease.  

One of the HUGEST issues I had with this clip is they say that gluten intolerance and celiac disease are the same thing. NOT TRUE. I am a language lady - all about choosing the right language and the media constantly saying the intolerance to gluten is the same as celiac disease is dangerous misinformation.

Gluten Intolerance: A reaction to the gluten that does not allow your body to digest the protein ( IgA, maybe IgG antibodies)

Celiac Disease: A reaction where your body may still digest the protein (& release IgA, IgG) but also produces IgE antibodies which travel through your whole body and create autoimmune responses outside the gut.

That is all medical mumbo but if you even look at the terms in context to the average person the difference is still known. If you were to hear someone say they had a lactose intolerance (inability to digest lactose) the picture that comes to mind is gas and diarrhea when they have some dairy. They are typically fine the next day so they often indulge once in a while & deal with the uncomfort for a night. When someone tells you they have a peanut allergy it is taken far more serious then the milk intolerance. You watch for cross contamination and the average person knows the seriousness of this allergy.  Same thing with celiac disease vs gluten intolerance. Language is very strong.

Why is all this so important? 

This gluten free diet is something I have to live on forever. No cheating, no wavering, forever. I do not want this disease to cause more damage to my body then it has already and I do not want it to escalate into cancer - a very real possibility for someone with celiac disease. 

Where public awareness really comes into play is in for people hosting a food service for someone with celiac disease or even the food service industry itself. If they have no idea how to safely prepare food for people on the gluten free diet it limits our choices so much.

Example. When I went to BlogHer a few weeks ago the ticket provides food for all attendees. When I won the ticket I contacted the people at BlogHer to make aware that i need a special meal plan due to celiac disease and was told that their events planner would have options available for people with celiac disease. I double checked again before I left to make sure I would be able to eat safe food & was ensured again.

So you know my shock when I walked in and saw the entire thing was buffet... which is NOT safe for any person with celiac disease. If the industry was actually aware of CORRECT and SAFE information they would have known this is not safe. Even if there was a plain lettuce salad on the table - it was right next to a basket of buns & who can ensure that no one picked up a bun before they touched the prongs to pick up the lettuce & gluten ridden crumbs didn't fall into the salad?! Yes people, one bread crumb will destroy my body - for months or forever (studies are showing neruo symptoms caused by celiac disease are not reversible).

Celiac disease is serious - it is not a fad - it is not the 'in thing' to have. I know if you are not living with celiac disease you will not really understand my passion behind all this - but think for a moment if you had a medical condition that was constantly undermined. These 'experts' spreading dangerous misinformation causing a lot of dangerous food for people with celiac disease. It creates a very dangerous environment for us and limits our options even further (safe dining out options).

:: I would love to hear your comments on this - what do you think? ::

I love hearing from you! Leave a comment below ♥ Accustomed Chaos / Canada Gluten Free Examiner Email: accustomedchaos@gmail.com

              

My Take On Proposed GF Labeling Laws To Include Oats

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In Canada for a product to be labeled or implied that it is gluten free it must be free from wheat, barley, rye, oats and their derivatives. This month Health Canada is looking for feedback on proposals to change the labeling to remove oats as a gluten free restriction. 

Oats have for a long time been thought to be an unsafe grain for celiac disease triggering the same autoimmune symptoms.  Studies have emerged that have shown that “pure uncontaminated oats” are safe for consumption for celiac disease sufferers and with a lot of push from consumers Health Canada is looking to allow these products {"pure uncontaminated oats"} to be labeled “Gluten Free”.

Health Canada is hoping to change the labeling laws in order to:

minimize the risk of inadvertent consumption and to maximize the choices of gluten free foods for individuals and families following the gluten free diet  

The problem is not all people with celiac disease can safely consume oats.  Health Canada even acknowledges this by saying that 

most Canadians are able to tolerate moderate amounts of oats in their diet.  

I know for myself I am not able to tolerate oats and I don't want to have to check every “gluten free” label to make sure there are no oats in the product.  And what is this “moderate amount” they are talking about?

In a great post written by one of the very best, and my favourite gluten free companies, Kinnikinnick addresses this issue.  According to studies they have read, the safe amount of oats that can be consumed per day is only around 50-70g of pure uncontaminated oats.  That is like the equivalent to your morning bowl of oatmeal. The problem with this is lets say you enjoyed your oatmeal before heading off to work – then you were offered a gluten free oatmeal cookie at the office.  Do you need to calculate in your head how many grams of oatmeal you have had today to make sure you don't go over your safety limit?

Gluten free is not a “fad” for people with celiac disease. It is the only way we can ensure our safety. By allowing oats {un-contaminated or not} we are adding risk to those of us who can not tolerate the grain and adding more confusion when it comes to how much we can eat. 

If someone wishes to consume “pure un-contaminated oats” on their own terms – let them seek that option out for themselves but let's keep the labels safe for those who need it safe and NOT include oats as gluten free. 


Edited to add: Want to make it clear that I understand that the proposition is looking at allowing "pure uncontaminated oats" into the gluten free labeling. When I write "oats" I am speaking even for "pure uncontaminated" oats.

:: Would love to hear your $0.02! :: 

Edited to add:

Head over to Health Canada's website and leave your $0.02 there too - they are taking comments until July 11th

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Biocard Celiac Test Kit – Profile & Giveaway

Biocard Celiac Test Kit

In Canada the month of May is Celiac Disease Awareness Month.  According to the Canadian Celiac Association it is estimated that 1 in 133 persons in Canada are affected by Celiac Disease and an estimated 97% of those affected are still undiagnosed.  With such a wide variety of symptoms not just specific to Celiac Disease, it can lead a lot of people to wonder if their ailments could be from Celiac Disease all while doing possible damage.

When I had to get Princess R tested for Celiac Disease, living in Ontario the provincial health plan does not cover this blood test for the laboratories and it costs us $123.  In February 2008 Health Canada approved the Biocard Celiac Test Kit – the first and only at-home kit available in Canada.

Biocard Celiac Test Kit allows for at-home testing with results in as quick at 10 minutes. No more waiting for lab appointments and results. This revolutionary test is as accurate as all laboratory tests for celiac disease in hospitals and private labs with a 92% sensitivity rate, 95% specificity rate and 93.5% accuracy.  The Biocard sells for only $50 and can be purchased through your pharmacist or online at www.celiachometest.com.

How It Works:

In brief, the Biocard Celiac Test involves taking a fingertip whole blood sample into a glass capillary tube, which is then inserted into a vial containing a hemolysing buffer to liberate the tissue transglutaminase (tTG) from the blood. If the antibodies against tTG are present in the sample, they form immune complexes with the liberated transglutaminase.  The diluted sample is then pressed through the filter tip to the test strip. They are then visualized in the Biocard Celiac Test kit and detected by eye as a positive test line.

Phase II Grant Awarded to Research "Low Gluten Wheat"

Arcadia Biosciences Inc. is a agricultural technology focused company in California, USA that look at ways to benefit health and environment. Arcadia had received the Small Business Technology Transfer Program (STTR) grant from the National Institutes of Health partnering with Washington State University (WSU) in 2005 to research lines of wheat with reduced celiac disease-causing proteins.

Working with Dr. von Wettstein and his colleagues at WSU, Arcadia used TILLING® technology to identify wheat plants in which harmful gluten proteins are minimized.

The progress under our Phase I grant has made us increasingly optimistic about our ability to deliver wheat varieties that people with celiac disease can enjoy. If the approach we are exploring in the Phase II grant is successful, our new wheat varieties may also appeal to a much broader market.

A Phase II grant has just been awarded totaling $855,500 funded by National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the American Recovery and Reinvestment Act (ARRA). The purpose of this grant will seek to reduce and remove a far broader range of the gluten containing proteins while still maintaining enough for 'bread-making qualities'. Phase II research is expected to be completed in mid-2011.

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Research: 3 New Projects For Celiac Disease in UK

Exciting research projects have begun for celiac disease in the UK. Three different grants given by Coeliac UK totaling £347,000 to be completed over the next 3 years, each researching a different area of celiac disease.

The first grant totaling  £143, 000 is one being completed by Professor David van Heel of Queen Mary College, London. Looking into the gene variants of celiac disease to try to better understand the disease and ultimately lead to quicker diagnosis and long term treatment.

The second grant is totaling £190, 000 will be lead by the team of Professor Daniel Aeschlimann who will be studying the neurological impact of celiac disease.  The research will use new markers in the blood to help identify those with classic neurological symptoms more quickly.

The third grand, which totals £14, 000 and lead by Dr David Sanders at the Royal Hallamshire Hospital in Sheffield and will work to improve speed of diagnosis by changing the current clinical approach. 

Coeliac UK is the leading charity working for people with coeliac disease and dermatitis herpetiformis. 

Our mission is to improve the lives of people with coeliac disease through support, campaigning and research.

To learn more visit Coeliac UK's website or visit then on Facebook.

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Research: Larazati - A Medication For Celiac Disease

A new treatment is being researched for celiac disease that will include an oral medication called Larazati. Clinical trials have just been completed and show promising results. 

The study was being completed to:

evaluate the efficacy of multiple dose levels of  [Larazati] AT-1001 in preventing intestinal permeability changes induced by a 6-week gluten challenge.

The 184 participants remained on a gluten free diet but along with their determined dosage of Larazati (or the placebo) were given a pill that contained 900mg of gluten. The medication was taken orally 15 minutes before each meal (breakfast, lunch and dinner) as well as the gluten capsule. 

The medication is said to strengthen the junctions that hold the intestine together which then blocks the gluten from going into the tissue and damaging it.  The trials have also showed some promise in repairing already damaged tissue. 

The medication is not being hailed as a cure for celiac disease but as another way to help those affected everyday by protecting from those times when they accidentally come into contact with gluten. 

The trials are still ongoing to look further into the safety and dosage.

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Research: Newly Identified Genetic Variants For Celiac Disease

The London based research team from the Van Heel Lab have begun a study looking at the link between genetics and celiac disease. 

According to the Van Heel Lab

Coeliac disease is known to run in families. If you have a close relative with coeliac disease such as a parent or sibling, there is a 1 in 10 chance that you will develop the condition. Identical twins, who share all the same genes, are much more likely to both develop the condition compared to non-identical twins, who only share 50% of their genes.

Late in 2009 the group began collecting samples of saliva from members of Coeliac UK and having received over 5000 samples they began their study looking at the possible genetic component of celiac disease.

During the analysis of the DNA samples the research team was able to identify seven previously unknown risk regions - 6 of which control immune responses and showed a correlation to other autoimmune diseases such as Type 1 Diabetes. 

The full study appears in the newest edition of Nature Genetics.  For more information on the research team or Professor David van Heel visit his staff profile on the Blizard Institute of Cell and Molecular Science site.


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Research: Worms Linked to Celiac Disease Relief

Researchers at Brisbane's Princess Alexandra Hospital in Australia conducted a study in which 10 out of 20 participants were infected with parasitic hookworms to look at the theory that the increase of celiac disease (and other auto immune disorders and allergies) were due to the increase in hygiene practices in childhood. 

20 participants with diagnosed Celiac Disease who had been off gluten for at least 6 months partook in this research study.  Half of the participants were infected with the hookworms applied to the arm and the other half received a harmless application of diluted McIlhenny & Co Tabasco Pepper Sauce.  The participants were not aware of which application they received.

During the 21 week trial each participant ate white bread daily and at the end of the study they were examined to determine the extent of their reaction. 

According to the study's author, Dr James Daveson the participants given hookworms:

"Experienced less inflammation and less damage was seen in the intestinal wall," 

Since there still seemed to be some damage it certainly doesn't sound like a 'cure all' and since any gluten exposure can lead to dangerous consequences the gluten free diet is still be best 'treatment' for celiac disease.

Would you think about infecting yourself with hookworms to enjoy gluten bread?

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