Tag Archives: Dermatitis Herpetiformis

Starting over

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As many of your who follow me know, I have changed my diet in the last several months.

This blog will be reflecting those changes.

I no longer do product reviews and have removed those I have done in the past.  (If you find one I have missed, please let me know)

Also, I am changing over my recipes.  They will all be gluten free, dairy free, processed sugar free, soy free and non-GMO.

Please bear with me as I make these changes, but when you come across a recipe you are interested in, contact me for substitutions for the fore-mentioned ingredients.

You might also be interested in checking out my new site:

A.J.’s Good Health

Eat well my friends :D

We Had a Capital Time – Day 2

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Our second day in Ottawa began with another lovely breakfast at which I met Devan (Accustomed Chaos)
After breakfast, Heidi, Devan and I settled down to listen.
The first speaker was Dr. Daniel Leffler. Dr. Leffler is the Director of Clinical Research at the Celiac Center at Beth Israel Deaconess Medical Center and Assistant Professor of Medicine at Harvard Medical School!
Dr. Leffler spoke to us about “The future of Celiac Disease: Therapies and Routes to a Cure.” Yes! There are people working on finding a cure for Celiac Disease.
He was very informative and a pleasure to listen to.
Up next was Beth Armour (Cream Hill Estates) to talk about “The Porridge puzzle” Ms. Armour enlightened us on the process of becoming certified gluten free. There is a lot more goes on behind the scenes than you might imagine.
The fields cannot have had any gluten containing crops for 2 to 3 years before planting oats. The oat seeds are constantly checked, by hand, to be sure no wheat rye or barley seeds have accidentally gotten in.
Cream Hill Estates was founded in 2004 by Ms. Armour and Tracy Perry (A medical genetics researcher). Thank you Beth and Tracy!
After Beth’s presentation, we had a break and I took that opportunity to visit the vendor’s area.
The vendor turnout was impressive!

I went to each of the booths and spoke with as many of these people as I could. I wanted to thank them for making the products that we know and trust to make our lives a little more comfortable.
I met some old friends such as Patsy Pie, O’Dough’s, and Pamela’s.
I was also introduced to companies I haven’t seen before.
The vendors were very generous with their samples, coupons and cookbooks etc. and I came away with a bag full of goodies.
Back to the seminars to listen to Dr.Ted Malahias speak about “Dental Enamel Defects and Celiac disease; another piece of the puzzle.”
So you might be thinking “Dentist? Boring!” but no! This man was funny (yes, a funny dentist) and informative. Were you aware that you should be asking your dentist about gluten in the polishes, impression materials, and adhesives etc.?
I could have listened to Dr. Malahias all day. But then I would have missed Dr. Samuel Godfroy, PhD.
Dr. Godfroy is the Director General of the Food Directorate, in the Health Products and Food Branch, Health Canada. Dr. Godfroy explained what his office is doing to enhance the protection of Celiacs in Canada.
On August 4th of 2012, the new labeling mandates will come into effect! This is great news! As of that date, manufacturers must either clearly list gluten-containing ingredients in the ingredients list OR it must be included in the “Contains” list. There will be no more guesswork.
Dr. John Lynch is the Executive Director of the Food Safety and Consumer Protection Directorate of the Canadian Food Inspection Agency. I am happy to say he was also our next speaker.
Dr. Lynch explained what his office has done and is doing about the labeling of items as gluten free. His office is ensuring that if something is labeled gluten free that it is actually gluten free.
As most of you already know, Celiac has been linked to type 1 diabetes in a big way. Our next speaker, Dr. Fraser Scott spoke to us with his seminar “Celiac disease as a model for understanding autoimmune diabetes.”
Dr. Connie Switzer and Jim McCarthy were up next with their “Professional Advisory Board Report”
Then Dr. Tariq Iqbal spoke about Celiac disease Arthritis.

Sunday morning, I woke up very tired with a slight headache.
I went to the conference center for breakfast and stayed long enough to hear Dr. Peter Green speak about “What’s new in adult and pediatric celiac disease”
Dr. Green was interesting but my head was starting to really pound, so I left. I had a 5 ½ hour car trip ahead of me.

About our hosts:
Our Master of Ceremonies was Laurence Wall from CBC Radio. He was a wonderful Master of Ceremonies – he is also Celiac.
I would like to thank June Williams, Conference Chair and all of the other Ottawa Chapter Members who made this conference the great success that it was. They put a lot of time and hard work into this endeavor and it showed.
I would also like to thank the various sponsors, especially El Peto Products for providing the bulk of our meals.
The conference center staff were all very polite, friendly and helpful – thanks to all of you as well.

2010 in review

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The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

Healthy blog!

The Blog-Health-o-Meter™ reads Wow.

Crunchy numbers

Featured image

About 3 million people visit the Taj Mahal every year. This blog was viewed about 33,000 times in 2010. If it were the Taj Mahal, it would take about 4 days for that many people to see it.

In 2010, there were 280 new posts, growing the total archive of this blog to 553 posts. There were 169 pictures uploaded, taking up a total of 93mb. That’s about 3 pictures per week.

The busiest day of the year was November 28th with 280 views. The most popular post that day was Celiac and Loved Ones.

Where did they come from?

The top referring sites in 2010 were cookeatshare.com, glutenfreefaces.com, facebook.com, twitter.com, and weglutenfree.com.

Some visitors came searching, mostly for flourless pie crust, gluten free baking powder biscuits, gluten free perogies, gluten free scalloped potatoes, and gluten free phyllo dough.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

1

Celiac and Loved Ones November 2010
1 comment

2

My Story in a Nutshell March 2009
48 comments

3

Gluten Free Perogies May 2009
8 comments

4

Gluten Free Phyllo Dough March 2010
2 comments

5

Gluten Free Scalloped Potatoes May 2009
2 comments

Celiac And How It Feels To Be “Glutened”

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How Being “Glutened” Affects Me
I am very careful to read labels and I cook about 90% of all the foods I consume, but we are all human and therefore mistakes are made.
When I accidentally consume something containing gluten (this includes cross contamination) I get quite sick in a very short period of time. Within an hour of ingesting the offending foods, I experience the following:
Bloating Pain just below the bottom ribs
Stomach cramps
Diarrhea
Over the following day or two, this happens:
More diarrhea
Dermatitis Herpetiformis (usually on my head)
Headache Body ache (probably from the diarrhea)
Brain fog
Depending on how sensitive you are and how much gluten you ingest, your symptoms could be anywhere from non-existent to severe.
If you are newly diagnosed, I am sorry I can’t give you a more definitive set of symptoms to look for.
If you have been “glutened”, please leave a comment with your particular set of symptoms.

Celiac and Natural Medicine

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As you read this article and those that will follow, please do not consider dropping your doctor. Holistic medicine would be used in conjunction with you family physician.

I recently went to see a Woman named Serena, who has a holistic practice because I was getting frustrated with my doctor, who would not look at all of my issues as a whole.

I am also tired of hearing “Take this pill” or “Use this cream” and developing side effects and no relief for the original complaint.

Serena has Celiac disease so she understands many of my problems. As a matter of fact, I attended a seminar about Celiac disease that Serena had given shortly after I was diagnosed.  In that seminar, I learned an incredible amount of information on how to live gluten free. Serena’s seminar was what inspired me to start http://www.glutenfreewithauntjayne.com

We spent 2 ½ hours together. We went over my personal medical history as well as the histories of my family members.

She asked about any traumas in my life as well as surgeries, hospital stays etc.

The last 40 minutes or so were spent explaining to me that my villi have most likely not healed completely due to the fact that I was Celiac for 50 years before being diagnosed.

Serena also, in those 40 minutes explained that most of my issues were caused by low iron, magnesium and a few other things.

I also learned that the reason I am having so much trouble losing weight (Who are we kidding, I have been gaining!) is that my villi are unable to extract what I need from my food and my body thinks it is starving. Because my body thinks it is starving, it is storing fat. She told me that I need to use chewable, sublingual or liquid vitamins and supplements.

I learned the importance of probiotics and how they work in the body.

Serena suggested that I have allergy tests done again as it has been about 15 years since the last tests.  She also gave me a list of tests for my family doctor to do for me.

I came out of that office armed with a list of suggestions that included (all liquid, chewable or sublingual) Melatonin to help me sleep, probiotics, vitamin supplements and most importantly, hope.  I have hope that the muscle cramps will stop.  I have hope that I will finally be able to lose weight!  I have hope that so many of the issues I have been dealing with for most of my life will go away! (Or at least lessen)

Serena is going to meet me in the Natural Health store on Thursday and I will get started with my new regimen that day.

I will follow up with you and keep you apprised of my improvements.

Stay tunedJ

Celiac And How To Cope With It

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Immediately upon diagnoses of celiac disease, there are precautions you must take.

You need to learn how to read labels. Watch for things like:

  • Barley
  • Bulgur
  • Couscous
  • Durum
  • Einkorn
  • Emmer
  • Faro
  • Kamut
  • Malt
  • Malt extract
  • Flavouring
  • Malt syrup
  • Malt vinegar
  • Oat bran oats
  • Rye
  • Seminola
  • Spelt (dinkel)
  • Triticale
  • Wheat
  • Wheat bran
  • Wheat germ
  • Wheat starch

 

You will also need to watch for gluten in:

  • Beer, ale and lager
  • Breading and stuffing
  • Broth and soup bases
  • Communion wafers
  • Croutons
  • Hydrolyzed plant proteins
  • Hydrolyzed vegetable proteins
  • Imitation bacon and seafood
  • Modified food starch
  • Pasta
  • Sausages, hot dogs, and deli meats
  • Sauces and seasonings
  • Soy sauce
  • Toothpaste
  • Worcestershire sauce

 

Next you need to purge your kitchen of gluten.

Go through your pantry and your fridge, read labels and get rid of foods containing gluten.  Any opened margarine containers, jam jars etc. need to be tossed. (Anything that could have come into contact with a knife or spoon that touched something with gluten in it)  If you find something you are unsure of, get rid of it.  My motto is “If in doubt, toss it out!”

Get rid of your wooden cutting boards, rolling pins etc.

Buy a new toaster. Your old one is contaminated.  Same goes for your bread maker and your toaster oven.

If you must share your kitchen with someone who does not live gluten free, you will need to have separate margarine containers, jam jars, toasters, cutting boards etc.  Be sure to have the gluten free items clearly marked “Gluten Free”

Sinks, counters and tables must be kept clean at all times.

At my house, there are no mistakes made.  My margarine containers have a different coloured lid from my boyfriend’s and I have my own mayonnaise etc too.

Our pantry is actually a small bedroom off the kitchen that has been converted.

We each have our own set of shelves.

Everything on my shelves are marked “gluten free”

He has a toaster, I have a toaster oven.

We are both in the habit now of wiping down counters and tables etc. before and after preparing food.

My boyfriend generally eats what I eat, but when I work nights or go away for a weekend, he indulges himself with his gluten laden treats.

Some celiacs also suffer with dermatitis Herpetiformis and must use gluten free soaps, shampoos, hand creams etc.  If you fall into this category, you will need to purge your bathroom as well. (I accidentally used the wrong shampoo a year or so ago and it took me months to get rid of the burning, itching spot on my head.)

After reading this you might feel a little overwhelmed. Take a deep breath and repeat after me “Once I get the house purged, it is easy to live gluten free”

You might have questions about all this. Here are some links to very helpful sites:

www.celiac.ca

www.celiac.com

http://allerjay1.com

http://glutenfreewithauntjayne.wordpress.com

www.glutenfreefaces.com

Take care of you!

Gluten Free Recipe Swap

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May is Celiac Awareness Month so…..
Here is my idea:

I was thinking I could rent a small hall in my area and invite people to make up a few batches of their favourite gluten free recipe and hand out samples along with a photo copy of the recipe to other Celiacs.

I also though it would be good to have an information table where those of us with blogs can give out flyers, fact sheets etc.

To help with the cost of renting the hall, I could “rent” tables to local gluten free business owners to show off their stuff. (Cosmetics, shampoo, soap, food items, etc.)

What do you think?  Good idea? Bad idea?

E-mail me at  freeauntjayne@yahoo.com

If you think it is a good idea, you could do the same thing in your area (?)

May is our Month!

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I am asking each and every one of you to do at least one thing in the month of May to help raise awareness for Celiac Disease!

Aunt Jayne

A Documentary on Celiac Disease

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My name is Susan Cohen. I made a documentary on Celiac Disease and the Celiac Disease community titled “Generation Gluten-Free.” Please visit www.generationglutenfree.com to learn more about the film and watch a trailer. The full documentary, which is 42 minutes, is available on DVD and can be ordered through my website.   The documentary was made while I was a student at Barnard College. It was filmed during the summer of 2005 and completed in January 2006. The goal of the film was to document Celiac Disease and the Celiac Disease community. All of the people who were selected to be interviewed in the film had a Celiac story to tell. Whether it was a sharing a personal Celiac diagnosis, discussing the founding of a support group, describing the process of developing gluten-free products, or bringing gluten-free dining to restaurants, I felt it was very important to get their stories on film. 
 
At the time, I was somewhat aware that the community was in the process of evolving from a grassroots movement to the national movement that it is today. However, when you are in the transition, you are not always 100% aware of it. I think watching the film now, I realize that I captured the community as it was developing and changing. 
 
 When the film was completed in January 2006, it was premiered at a Westchester Celiac Sprue Support Group meeting and had a very tiny run of the film done and distributed within the community. The run was very small as I did not have the resources needed to do a larger one. By June of 2007, the film had gone into hibernation.
 
This past Summer I made the decision to do a second, much larger run of Generation Gluten-Free. I realized that Celiac Disease and gluten-free foods are now everywhere in America, and that it was very important to share the documentary with as many people as possible. Not only has the size of the Celiac population in America grown tremendously, but people who do not have Celiac are curious about it and want to learn more.
Although the goal of the project was to document Celiac Disease and the Celiac Disease community, I realized that Generation Gluten-Free can also be used as a tool of awareness and education without being overbearing as the film is very casual, upbeat, and fun. When a viewer watches the film, they absorb information without realizing they are absorbing it. By the time the film is over, you have an understanding of Celiac Disease and how the community came to be in America. Most of the people in the film discuss their path to diagnosis including the symptoms they had. Viewers may recognize themselves and go get tested for Celiac or recognize a friend or relative and encourage them to look into it. Several of the people in the film did not have symptoms that are readily associated with Celiac, so I am hoping this may help people.
 
Beyond being used as a tool of awareness, the fact that Generation Gluten-Free is upbeat shows people inside the Celiac community as well as outside it, that having Celiac Disease is not a burden, but instead a blessing. I feel very lucky to have a disease that can be managed through diet and I hope the film helps other people feel the same way.

CeliacFacts E-mail Newsletter

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CeliacFacts email newsletter: “Information to support your gluten free health and lifestyle”. We publish up to 20 new topics each week to our blog and email newsletter, and to our Twitter and Facebook pages.The topics are 95% related to Celiac, but a few are more general food allergy items such as ingredient labeling. Sign up here: http://www.celiacFacts.com