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I've Finally Broken Through!
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17 posts in this topic

How exciting...

I have written the Globe and Mail (the big Canadian national newspaper) health editor, twice, and our local paper, twice, about celiac disease and all the compelling things that we all know: the surprising incidence of the disease, the myriad of symptoms, the eventual scary consequences if it is not addressed, etc. I also have written to two local radio show personalities with the same info and a request to feature it on one of their shows. Well, no surprise...I heard nothing from anybody. Well, I wrote a letter to our Ottawa Citizen yet again yesterday, responding to an article that appeared a couple of days ago that spoke about our modern world of gluttony, and how so many of us are willing to put up with the gastrointestinal distress that comes with too much food in exchange for overindulging in excessive processed food. I jumped on this, and wrote in about how for countless numbers of unsuspecting people, the diarrhea, constipation, cramps, etc. may not have anything to do with HOW MUCH one has eaten but WHAT one has eaten: gluten. I continue from there. And they are publishing it. I am SO happy. So anyone in the Ottawa area, check the Citizen out Saturday or Sunday, the letters section. It can also be read online. Gotta start with a small audience, and hopefully it can grow!

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That's great! I find the squeaky wheel aproach works pretty well.

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WOOOHOOO!!!! Good for you!

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Fantastic!!

On behalf of all Celiacs, a big Thank You seems most fitting. I hope it open the eyes of many readers.

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This is me giving you a great big pat on the back!!!

When your letter gets put on the papers website, could you post a link to it on this thread? I'd love to read it.

Murray

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Yep, sure thing. Should be tomorrow, which is great because Saturday is their BIG distribution day. I'm hoping there will in turn be written responses to my letter, and one big snowball.... :)

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I found this in another forum and will be taking it to our local news station. They did a segment on celiac disease a month or so ago and I am hoping they will pick up on this and follow through:

Public Service Announcement: Spreading Celiac Awareness Nationwide

Celiac Disease...If you

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Wow, Deb, that is fantastic...I'm on it!

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That is awesome!!!!!!!!!!!!!!!!!!

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Congratulations on getting published! That's fantastic! Good for you for being so persistant. :D

Thanks Deb for all that information.

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Great article Emily. I live in the USA, but was born in Canada. My little sister was diagnosed with celiac at a year old. The more I'm reading about celiac, the more of my symptoms fit. My blood test came out negative. A lot of my symptoms fit DH. I have had so many different rashes that were called anything from poison ivy to impetigo. I have been taking synthroid for over 10 years. My immune system has been out of whack for a long time. I finally went gluten free the beginning of the year. I have had many improvements since doing this. I'm 52 years old. I still am in the learning process, but have found I'm much more sensitive to gluten. Wendy

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Excellent article, Emily. I e-mailed it to my oldest daughter in Kanata, she may find it interesting.

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Well written article, Emily. What a great thing that they published it. This may lead the way for more articles.

Great job.

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This is so great...you cannot imagine the number of people who have come up to me today and said, "Wow! Saw your article...great stuff! So, you have this illness. You know, I'm suspecting that (fill in "I", or "my daughter", or "my mother", as they varied from person to person) may have this, too." And that's the only in I needed. It will be interesting to see if the letter has any written responses. The one thing I now regret not mentioning in the article (it's tough, because you only have a maximum of three hundred words) is the eventual consequences if the condition is not addressed. Hopefully those who suspect will go to their GP, who will tell them. Or the GI that they hopefully get a referral to...

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YEAH- THAT is great!!!!!!!!!!!!!!!!!!

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Super job Emily!! You've done us all proud!

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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