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jswog

Medical Alert Jewelry

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OK, so I've been 'strongly suggested' to get a medical alert bracelet since I developed a penicillin allergy several years ago. I have several other allergies that really should be listed (laytex, petrolium products, now eggs). Now I'm wondering if I should start looking into it again and include Celiac on it. Does anyone else do this? If you do, do you know a good source? I'm also VERY nickel sensetive, so I need one not too expensive but still nickel free.

Jen

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OK, so I've been 'strongly suggested' to get a medical alert bracelet since I developed a penicillin allergy several years ago. I have several other allergies that really should be listed (laytex, petrolium products, now eggs). Now I'm wondering if I should start looking into it again and include Celiac on it. Does anyone else do this? If you do, do you know a good source? I'm also VERY nickel sensetive, so I need one not too expensive but still nickel free.

Jen

Not for everyone, but recently someone Posted about getting a Medical Alert Tattoo... I think it was on this Forum...

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I have many allergic reactions to things like morphine, so if I'm ever in a accident & amedic gives me morphine I'm dead... I just purchased the care medical alert bracklet. It has a USB so any medic can access mymedical data via any laptop...You can update this one.....It wasn't pricey either $20.00.I was going to order online then I found our local Walgreen'scarries it...

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I have my tag on my car keys. If you have multiple allergies yours could tell an emergency responder to check for a card in your wallet. You can also get a form, perhaps from the Red Cross, that can have your medical info that can be posted on your frig at home. If you want one to wear go to your local jewelry store and find an ID bracelet or tag in a metal your not allergic to and have them engrave what you need on it.

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We use MedicAlert. My DD and I always wear our bracelets, and we carry our allergy packs with us (we have emergency medicines for our wheat/gluten allergy). We keep a card that is included with the MedicAlert service in our Allergy Packs, and it has more detailed information, including doctor and additional emergency contact information (the MedicAlert emergency contact info is engraved in our bracelets, and that will get healthcare providers access to our current MedicAlert file that we can update as needed). The service was very helpful working through our details in identifying what would be most helpful for us. We have included special instructions for calling the service collect USA, as we travel internationally - MedicAlert had all of that figured out for us once we explained that we travel. Our bracelets denote our allergies, as well as our celiac disease. I really love them, and so does my DD.

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I second MedicAlert. In addition to the info on the bracelet, you can put a detailed history in the online system, so when they are called they can provide that information to the providers.

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I have a severe wheat allergy as well. I wear an Italian charm bracelet that simply says 'EPI-Pen" on one wrist. I purchased it on Ebay. My other bracelet is a web bracelet with a dog tag on it. No metal touches my wrist. It says "wheat allergy", my name and birth date, ICE, and healthcare insurance info. I bought this bracelet online. Also from that same website I bought a sterling silver dog tag necklace with the same info on it. All of the items I bought have the medical alert symbols on them. I hope they are affective as I am very reactive to airborne wheat. I've had hives from airborne wheat 3 different times this week alone. God help me if I accidentally ingest it....OY

I also carry an entire allergy kit with 2 epi-pens. I pray that any EMT that comes across me when I am in trouble will look at my jewelry and know exactly what to do with me.

I really like the idea of the USB bracelet. I think I may have to head to Walgreen’s and check it out

.

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I've got the medicalert one as well.

One thing I've learned, though, is to make sure that if you have someone with you at the hospital, they will advocate for you, big time. Some hospitals are great and pay attention to everything, but far too many don't treat celiac disease or certain allergies as an important issue at all.

My food allergies really went nuts after I went gluten-free, so I ended up a lot in various ER's those first few months. I started off telling people I had celiac disease, but it never made a difference. One time out of dozens, I had a doctor actually check a prescribed med for gluten without us having to remind them. I even had a doctor once tell me that if there was gluten in the medication they were giving me, I shouldn't worry about it so much, as it was more important to 'save my life.'

If it had been saving my life, I'd agree. Considering the medicine in question was a muscle relaxant to use at home, though, I was floored by the response. It's unreal how completely unimportant the issue was treated by the hospital staff.

Even more disturbing was the treatment of allergies. Considering how immediately life-threatening these are, I would have thought they'd be treated more seriously, at least, but many times, it's almost like it's lip service more than actual concern. I've went to one ER that, when asking about allergies, refused to note down anything but medications I was allergic to, even though many of my allergens are IN medications. (now I'm trying to compile a list of medications I can't have, as a result)

Even with a med ID bracelet AND an 'allergy alert' tag on my hospital bracelet, there were frequently medications and food offered that I was allergic to, or that had gluten.

It's been an unpleasant shock, how badly I'm going to need advocacy if I'm ever unable to advocate for myself in that situation. I'd definitely prep whoever comes with you, if it's possible, to know they'll need to be aware at all times. :(

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T.H. I hear ya. I am terrified about old age the most, especially if I develop Alzheimer's like my mother has. I am sure a nursing home will kill me.

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Even more disturbing was the treatment of allergies.

I know it's not a life-threatening allergy, but I was completely shocked two weeks ago when I went into a dermatologist for a biopsy (prob DH, but he did the biopsy wrong...). The biopsy was done and the nurse was starting to bandage it, while the doctor was giving me instructions. He was telling me to be sure to not let it dry out and that petrolium jelly was great. Now, I had just filled out paperwork less than an hour before clearly stating that I had a petrolium allergy. I replied that I couldn't use it because I was allergic. The nurse froze. Then she started pulling off the bandaging she already had on it and frantically trying to 'clean' the freshly stitched open wound from the biopsy! GRRR... I'm so FED UP with doctors in general!

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One thing I've learned, though, is to make sure that if you have someone with you at the hospital, they will advocate for you, big time. Some hospitals are great and pay attention to everything, but far too many don't treat celiac disease or certain allergies as an important issue at all.

It's been an unpleasant shock, how badly I'm going to need advocacy if I'm ever unable to advocate for myself in that situation. I'd definitely prep whoever comes with you, if it's possible, to know they'll need to be aware at all times. :(

My husband is an AMAZING advocate for my health! As a matter of fact, he gets much more emphatic with restaurant/grocery staff than I do for the most part. I know if it were an emergency situation in which either he wasn't there or we were both unable to advocate for ourselves.

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WOW! I never dreamed this would start so much great discussion and advice. Thank you so much everyone!

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I've got the medicalert one as well.

One thing I've learned, though, is to make sure that if you have someone with you at the hospital, they will advocate for you, big time. Some hospitals are great and pay attention to everything, but far too many don't treat celiac disease or certain allergies as an important issue at all.

My food allergies really went nuts after I went gluten-free, so I ended up a lot in various ER's those first few months. I started off telling people I had celiac disease, but it never made a difference. One time out of dozens, I had a doctor actually check a prescribed med for gluten without us having to remind them. I even had a doctor once tell me that if there was gluten in the medication they were giving me, I shouldn't worry about it so much, as it was more important

to 'save my life.'

If it had been saving my life, I'd agree. Considering the medicine in question was a muscle relaxant to use at home, though, I was floored by the response. It's unreal how completely unimportant the issue was treated by the

hospital staff.

Even more disturbing was the treatment of allergies. Considering how immediately life-threatening these are, I would have thought they'd be treated more seriously, at least, but many times, it's almost like it's lip service more

than actual concern. I've went to one ER that, when asking about allergies, refused to note down anything but medications I was allergic to, even though many of my allergens are IN medications. (now I'm trying to compile a list of medications I can't have, as a result)

Even with a med ID bracelet AND an 'allergy alert' tag on my hospital bracelet, there were frequently medications and food offered that I was allergic to, or that had gluten.

It's been an unpleasant shock, how badly I'm going to need advocacy if I'm ever unable to advocate for myself in that

situation. I'd definitely prep whoever comes with you, if it's possible, to know they'll need to be aware at all times. :(

I'm not surprised to hear this, but it sure makes me nervous.

I tried explaining to my mother why I want her tested...because if she's in the hospital they may kill her before they test her. The danger isn't so much in what SHE does (ok, it is....) but in what doctors will DO to her.

I wear that bracelet because if I'm alone it's my only hope of defense. I'm truly terrified of waking up, pumped full of steroids and gluten and antibiotics and covered in iodine...because they are trying to treat whatever the heck they THINK is wrong with me.

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I know it's not a life-threatening allergy, but I was completely shocked two weeks ago when I went into a dermatologist for a biopsy (prob DH, but he did the biopsy wrong...). The biopsy was done and the nurse was starting to bandage it, while the doctor was giving me instructions. He was telling me to be sure to not let it dry out and that petrolium jelly was great. Now, I had just filled out paperwork less than an hour before clearly stating that I had a petrolium allergy. I replied that I couldn't use it because I was allergic. The nurse froze. Then she started pulling off the bandaging she already had on it and frantically trying to 'clean' the freshly stitched open wound from the biopsy! GRRR... I'm so FED UP with doctors in general!

Don't get me started about doctors and hospitals. Grr!

One thing I am thinking of is starting a local celiac/gluten sensitive group that not only supports each others diet awareness as well as social/emotional issues, but can also help act as advocates when one has to go to the hospital.

It is now just occurring to me that it would be a good idea for some of us to begin a national campaign to advocate for changes in doctors and hospital awareness concerning celiac and related issues. This is a big issue folks. We are running right into the big business medical cost effectiveness point of view that considers folks like us an unneeded complication--as well of course the medical establishment's myopic point of view around issues related to diet and auto immune conditions. For our own safety we can't allow this point of view to go uncontested.

Meanwhile the medic alert jewelry is a great idea!

Bea

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Don't get me started about doctors and hospitals. Grr!

One thing I am thinking of is starting a local celiac/gluten sensitive group that not only supports each others diet awareness as well as social/emotional issues, but can also help act as advocates when one has to go to the hospital.

It is now just occurring to me that it would be a good idea for some of us to begin a national campaign to advocate for changes in doctors and hospital awareness concerning celiac and related issues. This is a big issue folks. We are running right into the big business medical cost effectiveness point of view that considers folks like us an unneeded complication--as well of course the medical establishment's myopic point of view around issues related to diet and auto immune conditions. For our own safety we can't allow this point of view to go uncontested.

Meanwhile the medic alert jewelry is a great idea!

Bea

Those are some great ideas, Bea! I'm personally working on trying to spearhead a one-woman campaign to take to Darden corporate (Red Lobster, Olive Garden, Longhorn Steakhouse, etc., I work for Olive Garden) to try to get more Celiac or even allergy awareness education incorporated into training for all positions, so I wouldn't have time to spearhead anything like that, but would be more than happy to help in any ways I am able should you choose to go ahead with it. Please keep me in the loop!

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Those are some great ideas, Bea! I'm personally working on trying to spearhead a one-woman campaign to take to Darden corporate (Red Lobster, Olive Garden, Longhorn Steakhouse, etc., I work for Olive Garden) to try to get more Celiac or even allergy awareness education incorporated into training for all positions, so I wouldn't have time to spearhead anything like that, but would be more than happy to help in any ways I am able should you choose to go ahead with it. Please keep me in the loop!

Hi Jswog,

Good for you concerning Darden corporate!

Meanwhile have you considered either starting a local support group or attending one and see if you could get their support?

Even here on celiac.com perhaps you could start a thread so folks could help you by participating in a coordinated write in campaign to the Darden corporate group which could be of great help to you and everyone concerned since these are national chain restaurants you are talking about. Corporations are more likely to listen to a group than a lone "complainer".

As far as for me, well I need to start thinking along these lines too. Of course I already have a jam packed life made more complicated by the occasional CC with gluten. However a national write in campaign as well as a local support group with some of these ideas in mind could be a start--and could be something I could do from at home at night.

Bea

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Even here on celiac.com perhaps you could start a thread so folks could help you by participating in a coordinated write in campaign to the Darden corporate group which could be of great help to you and everyone concerned since these are national chain restaurants you are talking about. Corporations are more likely to listen to a group than a lone "complainer".

I'm not sure which direction I'm going with it yet, but as of now, my plan is to take it not as a 'complainer' standpoint, but as an "I'm an employeee with Celiac and I can see many opportunities (a big buzz word in restaurant management) that we have in which we can better serve other guests like me." I want to approach it not with a 'look at all these problems,' but with a 'look at the ways we can do this BETTER' mindset. At that point, I think it might be good to include a letter-writing campaign so that they can see we are here (and in numbers) and that it will positively impact the bottom line by tweaking the way things are done to open up a new market. As my husband keeps reminding me, we are a community (national and world-wide) and we DO talk about such things. If they take these steps, we WILL get word around. And word of mouth advertising (both positive and negative) has a much greater impact than ANY marketing campaign they could come up with.

So that's about where my thought process is with it right now. Any thoughts anyone???

Thanks!

Jen

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WOW! I never dreamed this would start so much great discussion and advice. Thank you so much everyone!

You started a fantastic topic! Thank you!

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My biggest beef about restaurants with "gluten free" menus is that they don't really offer the gluten free options (like gluten free bread and gluten free pasta). They just say "order without bread" or "order without croutons" or "order without pasta". Now I understand that Olive Garden has added gluten free pasta and I got excited until I looked at the menu and every sauce was a tomato sauce. I know, I know, I am a minority here, but I am so damned tired of ordering the chicken caesar salad "without the croutons" :P wherever I go.

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I'm not sure which direction I'm going with it yet, but as of now, my plan is to take it not as a 'complainer' standpoint, but as an "I'm an employeee with Celiac and I can see many opportunities (a big buzz word in restaurant management) that we have in which we can better serve other guests like me." I want to approach it not with a 'look at all these problems,' but with a 'look at the ways we can do this BETTER' mindset. At that point, I think it might be good to include a letter-writing campaign so that they can see we are here (and in numbers) and that it will positively impact the bottom line by tweaking the way things are done to open up a new market. As my husband keeps reminding me, we are a community (national and world-wide) and we DO talk about such things. If they take these steps, we WILL get word around. And word of mouth advertising (both positive and negative) has a much greater impact than ANY marketing campaign they could come up with.

So that's about where my thought process is with it right now. Any thoughts anyone???

Thanks!

Jen

Jen I think you are exactly right! Having someone(s) on the inside to create more awareness of a possible income flow for your restaurant corporation is a more positive and effective stance than what I was thinking of. Certainly I would be willing to sign email letters of support for your project.

As far as my idea so far (such as it is given its infancy) I agree that it would be strengthened by folks working inside the medical establishment. And then the rest of us could brilliantly support their point of view. I know there are a few folks here on celiac.com in the medical world. Soon we should start a thread to see if any would put their necks out for helping to alter the medical establishment point of view. Many I think are terrified of the possible economic consequences; however there may be a few brave souls who would be willing to buck the system and stand up for good medical science if not for fellow humanitarian reasons.

No matter what I agree it is unwise for either the food or the medical establishment to be so unaware of all the folks they are leaving out of their system. Nevertheless, as far as the U.S. medical system, it seems to be consistent with their beliefs to be blind concerning this and similar issues unfortunately. I have been advised that we are considered to be part of the costly "complications" they would rather avoid even acknowledging whether it makes sense or not. Part of it is because we don't represent a good way for them to make money. However the other part is that they are not set up to deal with medical issues that are holistic in their very nature.

They are better at dealing with emergencies or at singling out parts of the body rather than dealing with the whole being that celiac and severe gluten intolerance affect. You would think this attitude would have changed by now given how easy it is to cross reference things using computers and the Internet. Instead I am told they often don't do the cross referencing themselves and additionally think of informed patients as folks to shunt aside.

Thus I think it is important we take care of ourselves and help watch each others backs and stand up for our rights, like it would be for any other underdog group it seems. Never easy, but for the safety of our lives, perhaps quite necessary. The ironic spin off I think is that it would end up helping most everyone by eventually improving the attitude of the medical system.

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I have many allergic reactions to things like morphine, so if I'm ever in a accident & amedic gives me morphine I'm dead... I just purchased the care medical alert bracklet. It has a USB so any medic can access mymedical data via any laptop...You can update this one.....It wasn't pricey either $20.00.I was going to order online then I found our local Walgreen'scarries it...

I am not up on technology so please excuse this question if it seems silly. How do you get your medical records into the USB, or is it an access to the medical records themselves? I understand a USB is. Was this something your doc agree too? Would I have to get my doc to do this for me? I like this idea.

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I am not up on technology so please excuse this question if it seems silly. How do you get your medical records into the USB, or is it an access to the medical records themselves? I understand a USB is. Was this something your doc agree too? Would I have to get my doc to do this for me? I like this idea.

You plug the USB into your computer and add the information from there. Save it on the USB stick and you're done.

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With the USB, you might want to check if the EMTs and ERs in the area would even be able or allowed to use them. Many places won't let employees plug into the computers from private computers. Virus's I guess.

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I have never heard " yet" of anyone not permitting someone to access medical info from a medical USB bracklet that has a medical alert symbol on the front...When you have the old bracklet that you engrave there isn't much room if one has multiple issues plus hard to update.. No doctor needed for the Care one, just purchase & add your info that you want.. You can even add an emergency number in case..

This comapny also makes an IDcard for your wallet as well..

I just think the medical responders would be sued if a person had a medical ID on their wrist & they were not permitted to .access it &the ill person was given something & it was fatal like morphine is to me...just can't wrap my head around that one... I think this is the ID of the future...I stillhave a written card in my wallet as well as the cars glove box........

mamaw

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I have never heard " yet" of anyone not permitting someone to access medical info from a medical USB bracklet that has a medical alert symbol on the front...When you have the old bracklet that you engrave there isn't much room if one has multiple issues plus hard to update.. No doctor needed for the Care one, just purchase & add your info that you want.. You can even add an emergency number in case..

This comapny also makes an IDcard for your wallet as well..

I just think the medical responders would be sued if a person had a medical ID on their wrist & they were not permitted to .access it &the ill person was given something & it was fatal like morphine is to me...just can't wrap my head around that one... I think this is the ID of the future...I stillhave a written card in my wallet as well as the cars glove box........

mamaw

I was pleasantly surprised MedicAlert fit Celiac, Hashis, corticosteroids, sulfa, cephalexin on mine!!! Plus my id# and their phone#.

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