Crusade

[Adalaide]

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.

[GottaSki]

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.

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!

[kareng]

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

[Adalaide]

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.

 

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.

[Ciel121]

  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!

[Ciel121]

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

 

www.dsimpsonbooks.com/celiaccoeliac-awareness.html

 

 

Go for it. :-D

[Adalaide]

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.

[GottaSki]

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!!!

[gatita]

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.

[Adalaide]

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.

[Adalaide]

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.

[gatita]

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.

[GottaSki]

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.

 

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[Pegleg84]

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

[Adalaide]

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.

[Marie1976]

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!  

[VeggieGal]

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.

[Adalaide]

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.

[VeggieGal]

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