Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Crusade
0

19 posts in this topic

I have started a personal crusade this month. I have been waiting on pins and needles for May. I'm never silent about the fact that I have celiac and I don't hide it under the rug or behind the couch. On the other hand, my family is 2000 miles away and I don't get much of an opportunity to shove it in their faces which is very much what I want to do. Not because I want to rub their noses in the fact that I am not a hypochondriac and haven't been for 30 some odd years (although that does sound great) but because I know which half of my family it comes from. And I want them to listen the hell up and get tested!

 

So, this month I am posting on my facebook every day about celiac. Not just me rambling about oh woe is me I have celiac blah blah blah. Yesterday I went with a May first, celiac awareness, basic overview thing. Today I did the oh, so you're related to a celiac? Go get tested! I am including links to the University of Chicago Celiac Disease Center in every post. When something from there isn't relevant, I will will find other reputable sites to link.

 

I'm not posting about me, and my celiac. I'm posting about celiac. I am posting information I want my family to take seriously, because some of them are not well, and in a variety of ways. I will link things covering a variety of their symptoms. This will include the "standards" that the know-it-all doctors look for, the neurological, the infertility, the linked AI diseases, everything I can think of.

 

Yup, I am on a personal crusade. To get convince as many people as I can this month to go get tested for celiac. Sure, I could post like this on facebook whenever I want, but this month I can do it without them unfriending me. :lol:

0

Share this post


Link to post
Share on other sites


Ads by Google:

I have started a personal crusade this month. I have been waiting on pins and needles for May. I'm never silent about the fact that I have celiac and I don't hide it under the rug or behind the couch. On the other hand, my family is 2000 miles away and I don't get much of an opportunity to shove it in their faces which is very much what I want to do. Not because I want to rub their noses in the fact that I am not a hypochondriac and haven't been for 30 some odd years (although that does sound great) but because I know which half of my family it comes from. And I want them to listen the hell up and get tested!

So, this month I am posting on my facebook every day about celiac. Not just me rambling about oh woe is me I have celiac blah blah blah. Yesterday I went with a May first, celiac awareness, basic overview thing. Today I did the oh, so you're related to a celiac? Go get tested! I am including links to the University of Chicago Celiac Disease Center in every post. When something from there isn't relevant, I will will find other reputable sites to link.

I'm not posting about me, and my celiac. I'm posting about celiac. I am posting information I want my family to take seriously, because some of them are not well, and in a variety of ways. I will link things covering a variety of their symptoms. This will include the "standards" that the know-it-all doctors look for, the neurological, the infertility, the linked AI diseases, everything I can think of.

Yup, I am on a personal crusade. To get convince as many people as I can this month to go get tested for celiac. Sure, I could post like this on facebook whenever I want, but this month I can do it without them unfriending me. :lol:

Good job!

I'm using one of the FB banners GeeeeFreeeinDC posted about last week and one of the smaller ones here - I'm not doing much differently this month - with my greatly improved health I get questioned regularly by friends, family and now my new classmates....awareness is spreading.

Just think - one day we will all march into our doctors armed with lists of proper tests rather than a list of meds that are advertised every-#@*&%ing-where!

0

Share this post


Link to post
Share on other sites

I have friended? some Celiac sites. I share them on my FB so everyone has to see them.

0

Share this post


Link to post
Share on other sites

I am also using one of those banners. But, having that doesn't shove it in everyone's face every day. Already my youngest daughter today asked if she should be tested. I haven't pushed the issue because my oldest has been very ill and needed to be tested before she got pushed off the insurance she was on. (They live with their dad, I don't get to just march them into an office and say test them!) So, score one already. :D

 

I took the opportunity to explain that she should be tested, and continue to be tested, as should her sister, my brother and my parents. Plus so should everyone in my family with an autoimmune disease and listed the prevalence of diabetes and celiac. My niece was diagnosed with diabetes when she was like 4 or 5. Mostly, above all, I want my cousin who is struggling for a baby, and my niece to be tested.

1

Share this post


Link to post
Share on other sites

  That is so awesome!! I think a lot more people need to do this. It makes me furious when I see pink ribbons...seriously. I mean my grandfather died of cancer, but who isn't aware of cancer? But who is aware of Celiac? Not many. And Celiac disease can lead to cancer. I sit around wondering how many people who have cancer running around wearing those pink ribbons could have avoided it if they wore a green ribbon for Celiac first. It's so sad that there is no campaign to raise awareness of Celiac disease. I am buying a ribbon for myself this month and wearing it every day so people can ask me about it. And I teach college so I'm hoping many of my students will notice.

   It's so sad, but I know my cousin has Celiac--she has all the classic symptoms--but her mom (my aunt) says it's a "made-up disease" and won't have her tested. She is young and doesn't know how to take care of herself, so I don't know how to help her. I know if I just keep pushing, they all might just turn on me, so I don't mention it. Ignorance is amazing. Sooner or later it will hit them in the face--hard.

   Where are good banners I can post on Facebook for Celiac awareness? Get this thing going!

1

Share this post


Link to post
Share on other sites




I found a site that has a banner for Celiac awareness month:

 

www.dsimpsonbooks.com/celiaccoeliac-awareness.html

 

 

Go for it. :-D

0

Share this post


Link to post
Share on other sites

We don't have money for fancy things at this point in our lives. I told my husband though that if he ever gets it in his head to buy me jewelry, I want green ribbon emerald earrings.

 

There is nothing wrong with advocating for whatever thing... but seriously, as you said, who the hell is not aware of the 40985205846 kinds of cancer we're all supposed to be paranoid about and screened for at this point? If we could get people aware of the effects of celiac, and the links with cancer, mental illness, other autoimmune diseases, just the host of issues, there are so many other health problems people have that could be completely avoided! We can dodge the cancer bullet, alleviate the symptoms of things like autism, schizophrenia, bipolar, anxiety disorders, avoid developing additional diseases. And all by avoiding a simple protein!

 

Its so simple!!! Why does the world make it so complicated??? Okay, I'm going to go take a chill pill and stop ranting now.

0

Share this post


Link to post
Share on other sites

I found a site that has a banner for Celiac awareness month:

 

www.dsimpsonbooks.com/celiaccoeliac-awareness.html

 

 

Go for it. :-D

 

I love these...I asked Debbie Simpson to add the family version and she made it within an hour -- wonderful lady!!!

0

Share this post


Link to post
Share on other sites

Hooray for doing this! I've been posting here and there on fb for awhile, but it hasn't really sunk in how important it is to seriously spread the word to my family -- until now.

 

I mean really, I have my severe NCGI (aka "probably celiac" according to my docs) AND a wheat allergy; my mother died of Non-Hodgkins Lymphoma that started in her intestines; my uncle died of an "ulcer" at age 40; my brother has idiopathic ataxia; other brother has diabetes; and pretty much everyone in the family has psoriasis. I can't say they should all get tested because my bro and I both tested negative, so maybe we're all NCGI... but I sure wish my relatives would at least try going gluten-free for awhile and see if it helps.

 

Y'all are right, everyone warns us all about cancer but when you warn others about this, you get labeled a hypochondriac nut case. Sigh.

0

Share this post


Link to post
Share on other sites

I took the weekend off posting. I just need a break from life. A friend has gone missing this weekend, it is suspected at this point that he may have killed himself. Another lost a fiance to suicide recently. At the end of the month I will spend an entire week focusing on mental health and celiac because I can't take this any more. I can't lose someone else without speaking up.  :(  It is also mental health awareness month, which goes nicely hand in hand with celiac.

0

Share this post


Link to post
Share on other sites

Oh, and I am going to make sure I touch on the types of cancer linked to celiac that my husband's family has or has had, as well as beating the diabetes thing like a dead horse. I'm quite sure that my husband's family is a cesspool of undiagnosed celiacs. I finally got through to my husband last week, and once we have insurance that will cover his biopsy he will get appropriately tested. He is just so angry at the possibility because he was diagnosed at 9 with diabetes and his whole life has been about micromanaging his food. He is also super picky. He doesn't want to limit what he can eat so much more because he hated the 2 months he was gluten free with me. I mean, I get it... believe me after my third separate medical issue that is treated with a new diet restriction I really freakin get it. I also have no desire to bury a husband because he was more interested in pizza than being alive.

2

Share this post


Link to post
Share on other sites

I took the weekend off posting. I just need a break from life. A friend has gone missing this weekend, it is suspected at this point that he may have killed himself. Another lost a fiance to suicide recently. At the end of the month I will spend an entire week focusing on mental health and celiac because I can't take this any more. I can't lose someone else without speaking up.  :(  It is also mental health awareness month, which goes nicely hand in hand with celiac.

 

Oh no... I am so sorry to hear this! I will keep you in my thoughts, I have a friend going through a dangerous time as well.

0

Share this post


Link to post
Share on other sites

I took the weekend off posting. I just need a break from life. A friend has gone missing this weekend, it is suspected at this point that he may have killed himself. Another lost a fiance to suicide recently. At the end of the month I will spend an entire week focusing on mental health and celiac because I can't take this any more. I can't lose someone else without speaking up.  :(  It is also mental health awareness month, which goes nicely hand in hand with celiac.

 

So sorry to hear this Addie :(

 

They do go hand in hand -- I'll hold out hope that your friend will be found alive -- help is out there...it is just too flipping hard to find when one really needs it.

 

PS...not sure if there is a group like this where you are...but SOSL has helped our family heal these past ten years since we lost my BIL (he was a brother to me -- but officially an in-law) -- still one never ever gets over losing a spouse, brother, sister, parent, child, aunt, uncle or friend to suicide.

 

http://www.sossd.org/

Edited by GottaSki
0

Share this post


Link to post
Share on other sites

I'm so sorry, Adelaide! Nothing is more of a shock than finding out someone has taken their own life. Right out of the blue. I'll be thinking about you

 

And yes, mental health and celiac do go hand in hand. That was one of my biggest issues pre-gluten free, and I have trouble with anxiety when I get glutened. While diet might not solve everything, it sure a hell helps! My sister, also Celiac, had terrible depression/anxiety, was inadvertently hurting herself, nearly ODed on her meds, and as soon as she went off the meds and started a gluten-free diet she was immediately 10x better. She still has problems (partly because she's not strict enough with the gluten-free diet), but it's never been that bad again. So, even though it was a close call, I know the fear of almost loosing someone.

 

More people with mental health issues should also be tested for Celiac, because you never know how much of a difference it could make. With my sister, it was night and day.

 

So, I'll be out there spreading the word too.

 

Hugs

Peg

0

Share this post


Link to post
Share on other sites

The friend who we suspected had taken his life was found alive. I would say he was found okay, but that really is a stretch. It is just a relief to know he can be helped. I have lost a few friends over the years, and watched more who have made half-hearted attempts, and seen more still lose loved ones. It is no less heart breaking after a dozen times than it was the first.

 

I'm glad to say though, that I am back on my crusade this morning. We have to carry on, push forward and do what we can to help those still with us. Even if it means beating them over the head every day with celiac info. I may even be sick of talking about celiac by the end of the month. :lol:

0

Share this post


Link to post
Share on other sites

I agree about certain things not needing "awareness" at this point. Really who the hell isn't aware of breast cancer? That's not to say it's not serious -- I have had several members of my family that had breast cancer. But it's the unknown ones that need awareness! If I had been aware of celiac disease (or bladder prolapse!) I would not have suffered as long as I did.  

 

Good luck with your family, Adelaide. I have had family members say I'm a hypochondriac even after I was diagnosed! And I know which side of the family too, but it has done no good whatsoever to tell them to get tested. They are stubborn and in denial. I gave information and they can do with it what they will. They're adults and can make their own decisions. Whether I like it or not, LOL! ;) 

0

Share this post


Link to post
Share on other sites

Great idea about putting the awareness banner on facebook. I'll do it too :)

Just wondering though if theres an awareness page than can be shared on there what actually explains what:

celiac disease is and caused by

symptoms (and not just the standard but also neuro and weight gain as people always assume its just skinny people with stomach issues that get it)

etc etc ???

I just can't seem to find anything which stands out on ONE page. The awareness banner is good but before I was diagnosed , I didnt have a clue about celiac disease and based on the name alone, I might not have googled it to find out more. Hope this makes sense.

0

Share this post


Link to post
Share on other sites

The first week I included a link every day to something different I wanted to highlight from the University of Chicago Celiac Disease Center. Overall I focused on symptoms and getting a diagnosis. This week I have been doing something different and asking people to reach out to others in need and letting them know that if they want more info they can come here to ask questions. Next week I'll pick a different overall topic. But no, I have not found a place where you can get it all, quite simply, in one place. Everywhere I look it focuses on how it is weight loss and the big D... well if we keep only using that as our standard for testing we are leaving too many out in the cold. There is some good info on the U of C site, some here, some other places. But as for something in particular that covers a large portion of the lesser known symptoms that stood out for many of us for many years? Zip. Of course, I may just not be finding it.

0

Share this post


Link to post
Share on other sites

Thanks Addy, I'll try what you are doing then and check out the u&c website. Its about time that awareness was out there. I sometimes wonder though if the food industry and health institutes would be able to cope with whats probably the true figures/amount of people out there with celiac.

I'll join your crusade too :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,681
    • Total Posts
      921,725
  • Topics

  • Posts

    • I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'.  I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion.  If your diet is how you describe you are starving yourself.  You need to get yourself used to eating again.  What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal  for dinner. I hope your feeling better soon.
    • Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
    • Thanks I never heard of that dye before, I guess I have to find more natural meat thanks for the suggestion. 
    • Yes, I only eat one meal a day. Sometimes salad or fries or whatever I can find. And thanks for the replies again.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,681
    • Most Online
      3,093

    Newest Member
    Misalina
    Joined