Book Review: "Mommy, What Is Celiac Disease" & Gluten Free Holiday Giveaway Galore x10

 

As you know - myself and my daughter have celiac disease and she is just now getting to that age where she is going to be venturing out into school and birthday parties as well as her older brother.  I have been talking with them lately about what celiac disease is, what gluten is and trying to put it into words that they understand. I know this conversation is going to be an ongoing one - as they grow older and start to understand a lot more.

Earlier last week I was given the opportunity to read the book "Mommy, What is Celiac Disease" a book for children written and illustrated by Katie Chalmers about celiac disease and the gluten free diet. 

The information in the book was well directed to children.  The main questions were answered in a way a child would understand and this book does not scare children - it is aimed to do quite the opposite and promotes a positive outlook for children and their families. The information is aimed to the United States labeling laws as it does not mention oats as being a gluten-containing grain, but does have a wonderful dialogue on what happens to your body when you eat gluten.  This book addresses the role of the whole family in eating with the new diet - and attacks it from the angle of a new adventure - something fun and new for the whole family to do.  I love that! 

Now the fun for YOU! Just in time for the holidays YOU can win 1 of 10 holiday gift bags loaded with gluten-free goodies & treats for children & adults with celiac disease, plus a signed copy of Mommy, What is Celiac Disease? courtesy of Katie Chalmers, Author and Illustrator of the book.

I'm a Proud Theta Mom!

Hello Theta Moms! My name is Devan and I am a stay at home mom to three beautiful kids (aged 4, 3 &1) and a wife to an amazing and supportive man who has been my sweetheart since high school. I started Accustomed Chaos in January 2010 to create a space that was just for me – where I could write my thoughts and share my passions; a little of everything.

We live in a gluten free household because both myself and 3 year old daughter have Celiac Disease – an autoimmune disorder triggered by gluten and in order to keep us safe my other two children and my husband eat gluten free as well.  When I was first diagnosed 4 years ago I was lost on what I can eat and thought my life of loving food was over.  Over the years I have really come to realize that I am not missing out at all and love sharing my recipes and favourite gluten free products.  Gluten free versions of Oreo-type cookies, lasagna, chicken fingers and lemon meringue pie – all possible and delicious!

How The Media Is Making Things Worse For Celiac Disease

The road to motherhood has not been easy for me and I use my blog as a safe place to work through the grief left by my 10 miscarriages.  The support from my readers and fellow bloggers has meant more to me then I can express and I never knew how much e-hugs would help in my journey.  I use Accustomed Chaos and my story to break the silence of miscarriage and bring this taboo topic into the light.

My Journey Through 10 Miscarriages

I am also a passionate attachment parent and breastfeeding advocate.  I have been breastfeeding my youngest now for 20 months and would like to continue until she plans to wean.  What you wont find here on Accustomed Chaos is any judgment or bashing of any kind – especially when it comes to breastfeeding vs formula. I am a strong believer in informed choice – whatever that choice is. 

Breastfeeding Advocacy vs Formula Bashing

I am all about keeping it real and honest.  I am accustomed to the chaos of children and all that comes with it. I don't pretend to be perfect and I do my best to cherish these moments - even the crazy ones  - because time goes way too quickly.

Taking Off The Mommy Mask

Blogging and the Theta Mom community has been so supportive of me and I love what Heather has built up. I had the opportunity to meet Theta Mom in person at BlogHer this summer and she is even more lovely in person!  Thank you to Heather for all your support and thank you fellow Theta Moms!

I love hearing from you! Leave a comment below ♥ Accustomed Chaos | Gluten Free Attachment Parenting™ Email: accustomedchaos@gmail.com

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Celiac Disease: Introduced Gluten and 4 Months Later ...

I was diagnosed with celiac disease back in 2007. I had a bunch of life long health issues that looking back pointed to this fact - but when i was younger i was diagnosed as being lactose intolerant not knowing that many people with active gluten damage also can not tolerate lactose.

As an adult I knew something 'wasn't right' when i was on my honeymoon with my husband. I always had digestion issues and never really thought too much of it - it was my normal. Until that week long vacation.  Literally all i ate was tomatoes and french fries and i felt amazing. Amazing. 

I went on a very strict diet - liquid calories for 6 months because my stomach was so damaged and I was not able to digest or absorb anything. It was tough but i had more energy then ever, no headaches, no joint pain, my hair stopped falling out and no more digestion issues or horrible stomach pain. After the 6 months other food was very slowly introduced (gluten free of course) and i was doing great.  

I had 2 children at that time - 16 month old and a 3 month old at the time i was diagnosed. We still had gluten in the house and when i went back on solid foods we just kept our food separate.  Celiac disease has a genetic component to it so we held off introducing gluten into Princess R's diet until she was 14 months old (Big P was already eating gluten and we didn't limit that since he was already exposed). 

After 4 months of gluten into her diet it was very apparent that she had a problem.  18 months old and in the 4 months she has lost 5 pounds. Her stomach was bloated like she was pregnant, she had digestion issues that went from constipation to diarrhea and she was in pain. She was thirsty all the time and refused to eat anything that contained gluten.  I thought that point was interesting.  She was tired, clingy and had very dark circles under her eyes. 

I KNEW exactly what this was. 

I love hearing from you! Leave a comment below ♥ Accustomed Chaos | Gluten Free Attachment Parenting™ Email: accustomedchaos@gmail.com

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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

              

Wordless: Edible Awesomeness: Celiac Safe Food

When you are somewhere that has no safe food options for Celiac you are extra thankful when you do!
(Kinnikinnick Personal Pizza Crust/Spinach Salad/Blackberries)

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

              

Special Diets & Taking Food For Granted

Princess R & Big P Enjoying Their First Ice Cream Cone

Eating gluten free really isn't that awful. For me I can talk out the cravings for gluten containing foods because I know how eating it would destroy my body for over 3 weeks and then some. I can understand this and put things into perspective.

All that is totally different when it comes to my kids.

There are so many foods my kids have not eaten. Honestly, it really is for the better because most of those foods are not even almost good for you.  It can be hard to say NO to your kids and explain why they can't eat that treat. Yes, Big P is does not have any problems with gluten {that we know of} and Baby E has not been exposed to gluten but it would be even worse for Princess R to be denied because of her issues with gluten so for all fairness {and the health of the house} we all eat gluten free.

So, when food items that make my life easier and help my kids be kids arrive at my local grocery store it literally has me jumping and dancing in the aisles.  

This weekend i found gluten free ice cream cones.

It has been over 4 years since I have had an ice cream cone and my three children have never had one before. ever. My kids were so excited and so was I.  

They were incredible. Delicious. Everything I remembered ice cream cones to be. There was no difference in taste or texture - just pure awesome!

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

              

{VIDEO} Avoiding Cross Contamination

Video & Sound Production by Tangle Wire

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Battling Back to Normal and New Hope

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I have not really touched on this topic yet and I really don't want to get too much into it right now - but for the past 3 years I have been battling with some intense health issues.  In 2007 everything changed for me and I have since been fighting to get somewhere back to "normal" since everything changed. 

I have seen more specialists then I can count, been given different possible diagnoses, have had an embarrassing amount of testings done and yesterday I met with my third neurologist and for the first time I feel he is on to something.  I am so thankful to have met him, been given a new plan of action and best of all - what he thinks is going on is NOT life threatening like I had been told in the past.  ::Breathing again::

I still have a long way to go - somehow this busy mom of 3 is going to have to fit in 2 physiotherapy sessions a week, 2 massage therapy sessions a week, take new medication daily that causes fatigue and weight gain {but works so well with the nerve pain} and much more testing to be done.  

I am so hopeful, which is hard because I have been let down over the past three years - been told that this is something I am going to have to live with and it will get worse - but I am hopeful that this new neurologist has hit the problem on the head and this constant state of chaos will slow down or even go away completely!

This is not going to be easy - both the physio and massage I have been told are going to be painful and taxing but I am actually looking forward to it. It is something I can actively do to try to make myself better and that is at least something!  

One day I am hopeful that I will be feeling 100% healthy! If you know me in real life you would know how incredible that feeling would be for me.  I have a long road, some other health issues to clear up {knee and ankle surgery coming up + more kidney ultrasounds} but those are not even remotely as debilitating as this constant vertigo, numbness and pain I have been dealing with for 3 years.  

I have hope now that i might not have multiple sclerosis. That this might be something that could actually go away.  I have hope for the first time in 3 years that my kids will not have to watch their mom suffer from this. I know that this is not official - that the testing and waiting is still real but i have hope - and that is something!

Edited to Add: McLinky for Raising Madison Blog Hop #FindingHope

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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.

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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Toronto's Gluten Free Examiner

You can now read more of my articles on Examiner.com as Toronto's Gluten Free Examiner.  

Feel free to contact me if you would like to be a sponsor on the site or have a local event/product and are looking for some exposure.





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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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Gluten Free Diet: Do You Ever Cheat?

We have all heard of people who are on the gluten free diet but treat themselves with gluten once in a while. I have often wondered if those who do that actually have Celiac Disease or are just on a gluten free diet for healthier choice reasons or something else.

Call me crazy but 'treating' myself to gluten once in a while would be anything but a treat.  I am so sensitive to gluten that even a bread crumb has the capacity to ruin me for weeks or months.  I go through measures to make sure I don't accidentally get glutened.

My brother who also has celiac disease decided last year on his birthday to treat himself to a day of gluten binging. He picked a breakfast, lunch and dinner that he could not easily/affordably/conveniently recreate gluten free and ate to his hearts desire. The next day he was full of such guilt and pain from doing that.

For those of you who do 'treat' yourselves to gluten once in a while - do you find your reaction to be less or more after being off it for so long? For those of you who don't ever treat - what would you treat yourself with if you could 'unceliac' yourself for one day? 

Do You Ever Cheat on your Gluten Free Diet?

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Uncommon Symptoms of Celiac Disease

We all know the most common symptoms of celiac disease being mostly digestive symptoms including bloating/gas, bowel changes and fatigue.  When I am talking about celiac disease to some people I have had them confuse it for something like lactose intolerance which does have similar symptoms with one big difference.   

Celiac disease is an autoimmune disorder - the body attacks itself.  There are a lot of celiac disease symptoms related to malabsorption due to the intestines not working correctly and depending on which nutrient and/or mineral the body is lacking in. 

I have been reading about neurological symptoms of celiac disease and in one study it found that 10% of people with celiac disease suffer from an associated neurological condition including burning, tingling in hands and feet, the loss of feeling in the hands, feet, or face.  It has even been said that the neurological symptoms (gluten ataxia) of celiac disease mimic those of multiple sclerosis and can cause damage to the cerebellum, the posterior columns of the spinal cord, and the peripheral nerves.

What are some of the uncommon symptoms that you or someone you know has experienced related to celiac disease?

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