Medic Alert Id?

[StephanieL]

I have a child who has both Celiac and a bunch of food allergies. I HATE when people say that Celiac is a food allergy BUT...I also get that people "understand" that an allergy means not eating a food for the risk of dire consequences.

So I am getting him a Medic Alert ID (preschool starts soon) and was wondering what you all think. Put it as Celiac or as an allergy?

[AzizaRivers]

I vote "Celiac Disease - severe reaction to wheat, rye, barley traces." Or something similar. Would that fit? Hmm.

Having it as an allergy might be confusing because people often expect that a food allergy severe enough to warrant a medical bracelet would require an epipen, which I'm guessing your son doesn't have, or if he does it's for a different allergy and not for gluten. You wouldn't want people being misled if they realized he'd had gluten.

[StephanieL]

No, he does in fact have life threatening allergies. (Hence, why I get upset when people lump them all together )

I don't think all that and his allergies would fit either. I am leaning towards allergies, FPIES trigger and then Celiac since it is the least likely to kill him.

[GlutenFreeManna]

No, he does in fact have life threatening allergies. (Hence, why I get upset when people lump them all together )

I don't think all that and his allergies would fit either. I am leaning towards allergies, FPIES trigger and then Celiac since it is the least likely to kill him.

I have multiple life-threatening food allergies requiring an epipen and I also have celiac. I got an allergy alert bracelet from Lauren's Hope, but all my food allergies would not fit. They reccomended (and I went with) the following wording:

First name Last Name

Celiac Disease

Multiple Severe

Food Allergies

Carries Epipen

Then I made up a little card with my allergies listed and attached it to the epipen that I carry in my purse. There just was not enougbh room to put all my allergies. I think there was enough room to put an emergency contact number on the bracelet but I opted to leave it off since I'm an adult and always carry my epipen in my purse--they can find my husband's contact number there if I'm unconscious. Perhaps if his epipen is not going to be on him, but in the care of a teacher then you could put "has epipen" or something similar. Hopefully just having the bracelet and the mention of an epipen will prevent anyone from feeding him that doesn't know his food allergies. This is a good time for him to learn to not accept food from adults (or classmates) and to memorize his allergies so he can tell people what he cannot have.

ETA: To be honest I have no idea what "FPIES trigger" means and I have food allergies. I would not use that wording since many people may not be familiar with that term.

[organicmama]

I am uncertain of what FPIES is too.

[StephanieL]

FPIES is "food protein induced entercoitis syndrome". Long name for a non-IgE mediated food "allergy" that cause major GI symptoms that includes shock. So it isn't a food allergy but causes shock.

I wouldn't list it as FPIES, his trigger is bananas for that so I would put that.

I am thinking of listing his ana food allergies and FPIES and Celiac last if it all fits.

Thanks all!!

[Jenniferxgfx]

I was an EMT back in the day and I highly recommend spelling out the prominent triggers and calling them allergies. Most folks Wont know acronyms of any kind or what Celiac means during a reaction. Definitely say if an epipen is available.

The semantics aren't as important as it is to spell out the commonplace things that can harm your child.

[Skylark]

I got a 2-sided one and put my dangerous allergy on the front of my bracelet. On the back it has celiac, asthma, and thyroid. I figure medical professionals will know what celiac disease is, and if I get a little gluten it won't kill me the way my allergy will.

[organicmama]

Why not just use "serious reaction" instead of celiac or allergy?

[T.H.]

I ended up making the decision based on what I thought was most likely needed in an emergency. So I picked a couple of the foods that I react more severely to, as an example. Doctors should be able to recognize an allergic reaction, with that knowledge. Also picked a couple of the medications that I react to that are often administered in situations involving physical trauma...or during an allergic reaction.

I went the route of an added card, too. I was told that 'see wallet card' is useful, although reading it here, I can see more use in an epipen card, actually.

I have had celiac disease on my bracelet, but I've been debating over changing it. The majority of doctors I've run across simply don't have a clue. In their eyes, if I get gluten, I'll get the runs for a couple days. No big.

They are completely unaware of the more severe damage it can do, and there's not enough room on a bracelet to make it clear that I will get neurological damage from it. An allergy is inaccurate, but at least it may result in the proper precautions being taken, which is really all we're looking for in the case of an emergency, right? I'd like to be honest and forthright with a doc, so they are aware of how severe celiac disease can be, but IMO, there are better times to do it, like when it's not going to endanger my health to do so.

I didn't used to feel this way at all. Felt like it was being dishonest with the doctor to say 'allergy,' and so I would always say celiac disease.

In the last few ER visits I've had, however, celiac disease was completely ignored as a potential issue. Doctors were quite happy to give me pills without the slightest thought of whether they had gluten or not, and one even told me outright that the reaction was small enough that they weren't going to worry about it in the ER. They were too focused on more important things like trying to 'save my life.'

...if they were actually saving my life and seconds counted, I would have conceded that speed was vital. Of course, considering that if this were the case, they would have been likely giving me injections or medication through an IV, the argument lost some of its punch. And the fact that the medication referred to was actually for me to take home with me?

Well, let's just say my staunch desire to 'not want to lie' to the docs at the ER has taken a lot of hits.

[Skylark]

If you absolutely, positively must avoid gluten because of neuro consequences, I do think you are right to put "severe allergy to wheat" on your bracelet.

There are many celiacs like me, where a little wheat starch in a pill really is not a concern compared to my overall health picture in a life-threatening situation. Getting a trace of gluten in a pill does not have "dire consequences" for me. I'd have a stomach ache, runs, anxiety, poor sleep, a DH outbreak on my hand, and canker sores in my mouth for the next week, but none of those are a big deal in the context of a hospitalization for a serious health problem.

Sure I'd prefer a gluten free medication, but I'd rather have what my doctor thinks is necessary in the short-term and sort out the gluten later. I would be really upset to learn that a doctor didn't give me a medicine to help me be more comfortable, or one that would help prevent long-term damage because he was afraid of my reaction to a little wheat starch binder.

I have celiac on my bracelet so I won't get fed large amounts of gluten. I understand we even have to fight for gluten-free food on a tray and at that point I would yell, kick, and scream until I get safe food.

Maybe in the future doctors will see "celiac" on a bracelet and know to ask "How sensitive are you and will you have a dangerous reaction to gluten in a pill or some GI trouble we can sort out later?"

[ravenwoodglass]

If you absolutely, positively must avoid gluten because of neuro consequences, I do think you are right to put "severe allergy to wheat" on your bracelet.

As someone who has severe neuro issues with gluten I agree with you completely. And I just may change my Medic Alert tag from just celiac to what you suggest. I would hate to be hospitalized and moved to the psych ward because my neuro issues with gluten make me temporarily suicidal or even worse have them give me countless tests I don't need because they think I had a stroke or something when I start bouncing off the walls and falling over.

Thanks for pointing that out.