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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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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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