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.
Advertisements

2 Comments (+add yours?)

  1. Anonymous
    May 30, 2012 @ 20:52:26

    Awesome 🙂 -Erin

    Reply

  2. Kristeen
    Jun 25, 2012 @ 03:42:05

    Fascinating information! As you know, Saoirse was biopsied as a toddler because one of her levels was normal but the other was not. Her biopsy was negative but she was on a GF diet for about 6months anyway. The diet didn't seem to make that much of a difference (I think her bowel issues were more related to my deficiencies) so we re-introduced gluten.Saoirse did have a large white spot on her front tooth and frequently has canker sores…interesting.

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: