Celiac Conference

This past weekend I attended the Annual Celiac Conventionput on by the Canadian Celiac Association (CCA). It’s held in different parts of Canada each year (usually alternating east to west) and this year it was held in one of my favourite cities – Kelowna. As soon as I knew it was in Kelowna I chatted with Chef Husband to see if we might go. I had really wanted to go last year but the plane ticket was just out of my budget. We decided we would do it and extend our stay a bit so we could have a little vacation at the same time.

We jumped in the car at 9am on Thursday morning and travelled by way of Calgary, Banff, Golden, Sicamouse, Vernon and then Kelowna. It was a beautiful drive despite the snow (!!!!) and we arrived safe and sound at about 7pm BC time (an 11 hour jaunt). Our house was perfect for us – a beautiful 2 bedroom house in West Kelowna that overlooked vineyards and Lake Okanogan.

I’m going to split our visit into a few posts. Post 1 will be Day One’s Speakers. Post 2 will be our trip itself, and Post 3 will be Day Two’s speakers.

On Saturday morning I arrived bright and early (7:30am!) at the conference. I only knew a couple of people there so right away this was something that was way outside of my comfort zone. We were welcomed by the CCA and by Kelowna’s MP, Ron Cannan (who I should add showed up late, so the first speaker had started to speak, then they interrupted her so that the MP could welcome us – and he didn’t even apologize!!!! Good thing I can’t vote there!).

The first speaker was Dr. Sheila Crowe. Dr. Crowe has an extensive expertise in Celiac Disease and works at the University of California in San Diego. She was an extremely good speaker and I learned a lot. Here’s a summary of some of the key things I learned.

·         The main test for Celiac Disease (CD) is still tTg IgA, though in young children they will sometimes use the AGA version because it’s more accurate.
·         The biopsy is still the gold standard. This may become more important as time goes on – there are a number of drug trials currently underway and these drugs will be extremely expensive. If there is any hope of having them covered, a proven biopsy will likely be needed.
·         At least 4 biopsies should be taken and at least one of them should be from the duodenal bulb. This seems to be the most accurate way of testing and if CD is present, the duodenal bulb almost always shows it.
·         There are 2 genes known to be part of CD – HLA DQ2 and HLA DQ8. One of these needs to be present in order for someone to have CD. These genes are neither dominant nor recessive – they are just passed down by chance.
·         Having the gene does NOT guarantee active CD. Someone with the gene should be tested every few years even if symptoms are not present because of “silent Celiac” or asymptomatic Celiac.
Dr. Crowe spoke about how far we’ve come in research in the last ten years and I can certainly attest to that! I was diagnosed 3.5 years ago and I can see even how far the research and availability of products has come in the few short years. See her whole talk in pdf here.

Our second speaker was Dr. Mohsin Rashid. Dr. Rashid is a pediatric gastroenterologist out of Halifax. He was really interesting in terms of how he got involved in Celiac Disease research. First, he learned about it (albeit not very much) in med school. Then his daughter (who also had Type 1 Diabetes) got diagnosed with CD. Then his niece in Pakistan was diagnosed. He was then invited to be a member of the Professional Advisory Board of the CCA and it’s been Celiac ever since!

Dr. Rashid’s talk was all about “Celiac Without Borders” – it was a fascinating talk about Celiac Disease primarily in Pakistan. He spoke about the Gluten Free Diet being the prescribed therapy around the world, but that there is a serious lack of availability in many places. Pakistan for instance, has a predominantly wheat based diet. They have so many other health concerns (Hepatitis B and C being one), that Celiac Disease isn’t even on their radar and yet millions of people suffer from it.
CD is very social restrictive, especially for children, and in Pakistan this is even more so the case. The Gluten Free Diet (GFD) is also very costly – to put it into perspective, one dollar will buy 40 pitas in Pakistan, but will only buy 2 plates of rice. When you are faced with feeding your family, this is extremely expensive!
Ultimately, we are one community – it is the same disease, we all have the same problems, and it doesn’t matter where in the world you are.
Visit the Celiac Support Group in Pakistan for some great information as well as GF recipes! www.celiac.com.pk. The website is available in both English and Urdu.
See Dr. Rashid’s talk here.
Our third speaker was Dr. Hardy Lineback. I had the great privilege of sitting with Dr. Lineback throughout the day. We spoke extensively at lunch time about CD in general. Dr. Lineback doesn’t have any celiacs in his family, and he is very new to the disease, but his curiosity was peaked! I could literally feel him vibrating with excitement over learning about CD from both personal and professional perspectives.
Dr. Lineback is a dentist out of Toronto. He was asked by Dr. Rashid to work on a research piece about Dentistry and CD. Although his talk was more technical than the others, it was extremely interesting.
·         Many patients with CD exhibit white spots or striations on the teeth that looks exactly like fluorosis (fluoride overconsumption)
·         Teeth enamel is 96% mineral and dentin is 70% mineral
·         Bowel problems can erode the enamel of teeth from gastric acid –whether by vomiting or by reflux up into the mouth.
·         Symmetrical lesions on the teeth indicate that something is happening in the body, and isn’t local to the teeth.
·         There are more defective teeth in celiac groups.
·         Mouth ulcers/canker sores are symptoms of Celiac Disease
·         Patients on the GFD have fewer cavities – there are several hypothesis about this – one is that CD sufferers tend to be more diligent about their diets, another is that CD patients associate high sugar diets with feeling gross (given that many high sugar foods are also wheat based) so they tend to stay away from them.

Overall, this means be in good contact with your dentist! Watch for striations on your child’s teeth – front teeth are formed before birth but molars are formed after. Adult teeth are formed between 1 and 3 years of age so teeth can tell you a lot about what happened at certain times of children’s lives.

Also, Sensodyne may have traces of Gluten. Use Crest or Colgate instead.
See Dr. Hardy’s talk here.
Our last speaker was Dr. Ian Blumer. He has authored 9 books, including Co-authoring Celiac for Dummies with Dr. Sheila Crowe. His talk was about Autoimmune Associations with CD. Dr. Blumer was quite humorous which I think was needed after a long day of talks. Dr. Blumer made it quite clear that these Autoimmune Diseases don’t guarantee CD, and that if you have CD, you aren’t guaranteed to have another disorder. However, you are more likely to have another disease if you have CD. Diseases associated with CD are:
·         Dermatitis Herpetiformis affects up to 25% of people with CD. It looks like small blisters on a rash but most of the time it presents differently because it is so itchy that many people scratch until they bleed. A biopsy should be taken if DH is suspected. The Gluten Free Diet will make significant improvements and many people on the GFD report no symptoms of DH.
·         Vitiligo is likely autoimmune (think Michael Jackson)
·         Psoriasis
·         Eczema – tends to affect creased areas more
·         Ataxia – being off balance – B12 can be the culprit
·         Infertility – is associated with active CD
·         Miscarriage – also associate with active CD
·         Peripheral Neuropathy – damage to small nerves in the feet and hands
·         Type 1 Diabetes
·         Thyroid Disease – both Grave’s Disease and Hashimotos Thyroiditis
·         Elevated liver enzyme levels
One thing that was noted about Thyroid medication is that this is one instance where the brand DOES matter. Do not use the generic brands if you have been prescribed another type. Also, how you take it is important – it needs to be taken first thing in the morning on an empty stomach.

Lastly, it was announced that Health Canada has pledged $245,000 for Celiac Certification programs. A step in the right direction for sure. The first Certified Gluten Free product by the CCA was also announced – Lays Potato Chips by Pepsico.

While these are both amazing advances, I think they’re also kind of sad. Celiac research money is hard to come by given that there are no pharmaceuticals involved. The drug research that is being done is mostly for those one-offs – when you’re going to a restaurant and want to avoid cross contamination for instance, a drug may be coming that will stop the reaction, but it’s not for every day use. The only prescribed therapy is the GFD and unfortunately, that means not a lot of grant money.
Also, while I love that we are getting more Certified GF foods and that the CCA and other organizations are working diligently to make sure our food is safe, it saddens me that the first one certified by the CCA is potato chips – complete junk. I feel that there is so much GF crap out there! There are more companies trying to make healthier GF options, but walk down any GF aisle and you will see copious amounts of junk food – just what our bodies do NOT need!
Remember – many whole foods are inherently gluten free – vegetables, fruits, meat. Put into your body what it NEEDS.

It Took 30 Days..

Disclaimer: This post has nothing to do with Celiac Disease. I can’t believe that during Celiac Awareness Month I’m posting something else, but given I’ve just completed my first 30 day yoga challenge, I decided to change things up. I need to commemorate this moment and I don’t have the energy to journal it all (do people write anymore? Writing cramps my hand now!)

So, I did it. And I learned a lot. The interesting thing is that I didn’t think I could do it. I put a lot of doubt in myself I think to cushion the fall when I knew that I was sure to fall, or fail. But although I did fall, a lot, I didn’t fail. Each fall was met with new awareness, new strength, and new respect.

I’m not perfect. I’m no size 6 perfect figured woman. I’m a mom of 2 (amazing) babes that spent a lot of time ignoring exercise. But that’s changing. And already my shape is changing. My poses aren’t perfect – I can’t necessarily go super far into them, or round my back perfectly (and to be honest, I think my back surgery in 2009 has a lot to do with that), but I know that they’re where I need to be.

Wild Thing Pose

In 30 days I learned a lot. Here’s my list.

1. I can do a lot more than I give myself credit for. To go into Wild Thing Pose, you can from Downward Dog to 3 leg dog and then flip over. And I can do it. Almost gracefully.

2. It’s okay to fall. Falling means you learn. Whether it’s falling as in making contact with the floor or falling symbolically, a fall is still a fall.

3. Getting up 30 days in a row to do yoga IS possible. I almost even enjoyed getting up that early.

Side Plank with Leg Raised

 4. I can do a side plank and not want to die. I couldn’t do a side plank at all before I started the challenge.

5. People drive like assholes before 6am. I think I saw on average someone run a read light every day. I got tailgated like crazy and people zoomed around me. No one signalled. It was kind of apalling.

6. You’re never alone. When you have a bad day, there will be someone there to hug you.

7. It’s okay to cry. Crying is healthy; it gives us a release.

I have no idea what this pose is.. I could only find the names for ones on flat heels, not on tiptoes.

 8. 62 people took part in this challenge and they all wanted more – more from themselves, more from life, more. It’s okay to want more.

9. Different kinds of yoga do amazing things. In the 30 days I did: Akhanda Yoga, Anusura Inspired Yoga, Chakra Yoga Flow, Hatha Flow Fusion, Kundalini, Restorative Yoga, Kosa Yoga, Vinyasa Flow, Yin Yoga, Yin/Yang Yoga Fusion, Yoga-Core, Yoga Flow, Yoga for Strength – Whew! (You can see descriptions of each here) I also had many many different teachers, each of whom taught us something in their own right (thank you to Prana Instructors: Leala, Isabelle, Sean, Brittany, Heidy, Mallorie, Angela, Jana, Jaya, Jen, Kate, and Donna).

Poet Pose

10. Life often hits you in the face with what you need at that moment. Embrace it, even if it’s scary.

It’s all about Awareness

With May being Celiac Awareness Month, I’m going to focus today’s post on awareness. I’m going to compare yoga with Celiac Disease. Yup, you read that right. You see, after 26 days of yoga in a row, there’s little else that is focused so prominently in my head. So I figured now was the time.

On another note, we got the results for Mr Man’s scope and of course, they came back positive for Celiac Disease. We are meeting with a nutritionist next week – not because I feel that we need to (I mean really, we just went from 50% to 75% of the house having Celiac.. it’s not like this is new to me), but I feel that Mr Man needs to. I think that at his 6 wise years of age, he will really benefit from this meeting.

Now onto the good stuff. I have divided this into 4 sections that came to my head.

Making Mistakes
I’m going to tell you a story. I fell on my face about 10 days ago. When I say fell on my face, I mean that I was showing off, trying to go into crow pose to show my husband my progress. I didn’t engage my inner thighs or my core. I tried to hold my whole weight on my hands. And I tilted forward and wham. Face smashed against the kitchen floor, nose bleeding, nose swollen, and a giant bump on it. I’m lucky I didn’t break my glasses. It was a hugely embarrassing moment. One that required a lot of gently reassurance internally for my bruised ego, and a lot of ice for my bruised nose. It took me a full week to be able to wiggle my nose without pain. But you know what I learned from that? Go into a pose with confidence and strength. Don’t go into a pose mindlessly because then that’s when you’ll fail. Each time you go one cm farther in a pose, you’ve accomplished so much.

How does this relate to Celiac? Think of it – the first time you tried baking how’d that go? What about all the products that you’ve bought that tasted so bad you couldn’t bring yourself to eat them despite spending a small fortune on them? Or what about the time you forgot to inform your friends, family, or the restaurant that you couldn’t consume gluten? Going gluten-free is an adventure; it’s a lesson in patience. You need to give yourself a break and know that we’ve ALL made the mistakes and we all STILL make the mistakes. We’re not perfect. Sure maybe after a few years we’re pretty confident in our abilities, but I still make things that sometimes taste like shit and wind up throwing them out.

It’s a learning curve – let yourself learn; let yourself fall.

Today, I managed to go into crow again – controlled and gracefully and though I only held the pose for the longest 2 seconds of my life, I wasn’t afraid. And I’m not afraid to try it again.

Listening To Your Body
In yoga at the beginning of almost every class, the instructor will tell you that this is your practice; it is what you make it. Yoga isn’t a competition. There’s no one going around judging you for not touching your nose to your knees in a forward fold. If your body says “I need a break”, going into Child’s Pose is ALWAYS an option. There are people that lay in the relaxation savasana pose the entire class and that’s okay. They are listening to their body.

Just today I went to Mr Man’s Mother’s Day Tea in his kindergarten class. I was sitting beside one of his friend’s mom’s. We started to talk about Celiac (because I’m not going to lie, I try to bring it up any opportunity I have so I can educate others) and the Mom asked me how I knew, how long it went on for, and how I got tested. I shared very basic information about My Story at which point she then informed me of some of her symptoms (and can I just say I love how comfortable people get talking about poop when they’re trying to get to the bottom of things?). My advice to her was: Listen to your body. If something feels wrong, then it’s likely wrong. Go get tested; then you’ll know.

People, listen to your body. Sure, some Celiacs are asymptomatic, but many Celiacs also live with their symptoms for years without being tested. So go, get tested.

Diving Deeper
In 26 days I have progressed to the point that I can now do Side Plank with a leg up. When I first started, I couldn’t even do Side Plank for more than about 2 seconds. I can reach my left heel to the floor consistently in downward dog and my right is almost there. I can twist a little bit farther, fold a little bit deeper and hold a pose a little bit longer. I am diving deeper into my practice both physically and mentally.

With Celiac, you can either stay at the surface or dive deeper. You can buy ready-made products (and there is NOTHING wrong with that!) or you can start experimenting. You can get involved with organizations or reach out and make other Celiac or gluten-intolerant friends.

In Mr Man’s class today they read Katie Chalmer’s book “Mommy, What is Celiac Disease?” – all of the kids went home knowing more about my son’s disease – what it means, what his body is doing, and how food affects him. His teacher told me the kids were mesmerized and loved that we sent in the book. We dove a little bit deeper.

Coming to Calm
As I said previously, I’m an extremely anxious person. I battle varying degrees of anxiety (and sometimes depression) regularly. Yoga has begun to teach me to be grounded, to be calm, and to quiet my mind. This has been the hardest for me to attain. This is often how my mind goes in yoga: Inhale… exhale… hmm.. my tummy really balloons.. what do they mean touch your belly button to your spine? Don’t they know that’s impossible? Oh I’m wandering again.. inhale… exhale… I wonder if I’ll be able to nap when I get home. Oh shoot I have to pick up the kids.. oh there I go again .. inhale… exhale… does anyone else feel funny doing a wide leg forward fold and looking up to see someone else’s butt?…
And so on. Quieting my mind has been difficult, and I’m not there yet. But I’m better than I was at the beginning.

I’m the same with Celiac. At the beginning, I was hypersensitive. I was paranoid truthfully, about potentially getting cross contaminated, or making a mistake. But slowly, over the last 3.5 years I’ve been coming to calm. I’ve been more at ease with Celiac because I know that I have a lot of control over it. It’s possible to still get glutened, but it’s also possible to be diligent without being anxious all the time. I’m comfortable in my knowledge; I’m comfortable being calm.

Yoga and Celiac.. they’re basically the same in approach and learning, and they’ve both been a godsend for me.

Celiac Kids

Did you know that May is Celiac Awareness Month? (It’s also Allergy Awareness Month so really, it should just be a month of complete awareness in our house). Other than me, who do you know with Celiac Disease? What is one thing that you can learn about Celiac Disease that you didn’t already know?

I’ve been having an amazing month. I’m doing a 30 day yoga challenge and I’m putting my health first. I’ve occasionally put my health first in little bursts, but this is the first time that I’m putting it to the forefront of everything I do. I’m getting stronger – mentally and physically. And I’m educating people about Celiac Disease at the same time.

In the last 2 days, 2 friends have asked me questions about Celiac. The cool thing is that a) I know the answers to the questions that I’m asking and b) They are learning more for the future. Each time someone learns something new about Celiac, they are learning more about their friends, their family potentially, and others around them. Generally, they become more sensitive to those with food restrictions. It’s amazing.

But on to more awareness. I have 2 children. Both are celiacs. Both have completely different stories. You can read Miss A’s story to recap, and I have yet to write Mr Man’s story given his diagnosis is so new (but I will do a post soon as he had his scope on Monday).

So you have a child. And you’re concerned. What are the symptoms of celiac? What do you look for?

Well, know this: If either parent has Celiac disease, there is a greater possibility that your child does. Testing before the age of 4 can often give inconclusive results (In the case of Mr Man, he was tested at 3 and was “normal” so in the range of 7-10 for the antibody test. At 6 he was retested and had a level of over 1200). After 4, the test results should be clear. You may also want to test for the gene. If the gene is not present, you’re likely in the clear (though there could still be some sensitivities). If the gene is present, you want to repeat the test every 2-4 years to make sure the disease hasn’t been triggered.

Let’s talk about symptoms, specifically in children. I’ll use my children as examples but know this: every child is different and likely won’t exhibit the same reactions to a tee. (List taken from Celiac Disease Association)

* Abdominal Distention – Mr Man had this – it’s commonly referred to as “wheat belly” and makes a child look pretty big, despite being malnourished
* Bloating – do your kids toot a lot? Think of how bloated you feel when you’re gassy.
* Bruising Easily – they fall, they bruise. My kids always had/have bruised legs. As do I.
* Constant Unexplained Fatigue – This was apparent with Miss A before diagnosis – she would always want to be up and sleeping from fatigue. Mr Man can’t seem to sleep period. He’s always exhausted.
* Constipation – This was an issue with Miss A – she was a great pooper until about 14 months or so and then she would literally sit there and cry. I’d have to hold her hand and sometimes even hug her. Mr Man is pretty regular, but his poops aren’t exactly normal.
Diarrhea or Runny Stools
Failure to Thrive – Miss A was actual labelled Failure to Thrive. She was suffering from extreme protein deficiency from lack of absorption of any nutrients.
Foul-Smelling Stools or Fatty, Floating Stools – Need to double flush or turn the fan on for your kids?
Frequent Headaches or Migraines – While this is something I suffer from, neither of my kids appear to
Frequent, Loud Stomach Rumbling or GrowlingGas or Stomach Cramping – Mr Man has horrible gas and often complains that his tummy hurts, especially at night.
Grayish Stools – We went through this with Mr Man when he was about 3-4 but he stopped having grey stools after age 4.
Joint Pain
Pallor (unhealthy pale appearance) – Miss A is still pale, but when she was at her sickest, she was almost see-through. Mr Man is always pale with dark circles under his eyes.
Panic Attacks – My boy suffers from these.
Stomach or Intestinal Pain – see Gas or Stomach Cramping
* Tingling or Numbness in Extremities
Unexplained or Unusual Muscle WeaknessUnexplained Skin LesionsWeight Loss – Mr Man has lost a couple of pounds, Miss A just stopped gaining altogether.
Something that isn’t in this list that is also a big symptom is personality changes. Constant irritability, anger, trouble concentrating, anxiety; these are all symptoms in children. Think about it – they don’t feel good, they’re not getting their proper nutrients, so they are cranky. Wouldn’t you be cranky if you felt terrible All. The. Time?

The list is long, and sometimes unless you see the list all at once, it’s hard to pinpoint the issue which is why Celiac is so under-diagnosed, especially in children. A blood test will lead you down the celiac road if that’s where you need to go. Don’t let your children suffer. It’s hard for sure. But with your support and help, they’ll get through it.

Feel free to ask me anything if you have questions.