If Gluten-intolerant/what Do You Tell Medical People?

[oceangirl]

Hello All,

Having just had to go to an emergency room (viral thing), I'm wondering what or how or if those of you who've been diagnosed "gluten-intolerant" as opposed to "celiac" tell medical people about your condition. I needed to reveal this because of being given antibiotics- have not even told my regular physician or Ob-Gyn, and it feels so awkward to explain gluten intolerance. Do you just say you're celiac? I don't feel comfortable with that but also, knowing how difficult it is to get the point across, wonder about others techniques. Any advice is very much appreciated.

lisa

[celiacgirls]

When I had surgery, I told them I was gluten-free. I didn't specify why and they didn't ask. My regular doctor I told about the test because I wanted to change to a gluten free prescription. She did write me a new prescription but she also said "gluten intolerance is the diagnosis of the day". I am hoping she will become more of a believer as I keep going back and reporting positive changes. But it doesn't really matter what she thinks if she will give me the right medicine anyway.

[oceangirl]

When I had surgery, I told them I was gluten-free. I didn't specify why and they didn't ask. My regular doctor I told about the test because I wanted to change to a gluten free prescription. She did write me a new prescription but she also said "gluten intolerance is the diagnosis of the day". I am hoping she will become more of a believer as I keep going back and reporting positive changes. But it doesn't really matter what she thinks if she will give me the right medicine anyway.

Karen,

Thank you; that is a good way of putting it and what an annoying response. But, you're right- who cares as long as they get the picture.

lisa

[Guest Evelyn&Ric]

In the emergency room, admissions put a RED band around Ric’s wrist “gluten intolerant” and a sign above is bed. After many hours of tests and waiting around, a nurse brought him juice and WHEAT crackers! No matter what you tell them, you must stay vigilant. Ask about every injection, medication, etc.

[queenofhearts]

There was another thread just recently about the abominable record of hospitals serving "gluten-free" food that was definitely not gluten-free. I would certainly not trust the staff to keep aware of the gluten-free thing, I'd ask detailed questions every single time. There are too many distractions & too little understanding of the gluten-free diet to depend on a bracelet or a single notification. In fact, if I needed hospitalization, I'd bring my own food & not touch a thing they gave me. With meds it's trickier, though, since you can't bring your own! You have to drill them on it & expect impatience, irritation, & dismissiveness on their part. No fun but that seems to be the reality of it.

Leah

[oceangirl]

There was another thread just recently about the abominal record of hospitals serving "gluten-free" food that was definitely not gluten-free. I would certainly not trust the staff to keep aware of the gluten-free thing, I'd ask detailed questions every single time. There are too many distractions & too little understanding of the gluten-free diet to depend on a bracelet or a single notification. In fact, if I needed hospitalization, I'd bring my own food & not touch a thing they gave me. With meds it's trickier, though, since you can't bring your own! You have to drill them on it & expect impatience, irritation, & dismissiveness on their part. No fun but that seems to be the reality of it.

Leah

Thank you all.

Yes, I agree, I would never trust any food in a hospital; it's clear how much even medical people don't know or understand regarding this issue. I appreciate all your thoughts. Basically, as we all already know- we're on our own. Man, we need more researchers.

lisa

Thank you all.

Yes, I agree, I would never trust any food in a hospital; it's clear how much even medical people don't know or understand regarding this issue. I appreciate all your thoughts. Basically, as we all already know- we're on our own. Man, we need more researchers.

lisa

Oh yes, after my endoscopy/colonoscopy & coming out of anesthesia, (as someone who had a positive tTg), the nursing staff offered me peanut butter crackers! It's just off the charts, isn't it?!!!

[loraleena]

I have just been telling them I have celiac. It is a hell of a lot easier.

[gfp]

I have just been telling them I have celiac. It is a hell of a lot easier.

If I wasn't diagnoses I wouldn't hesitiate to tell them you have celiac, don't mess about .. they are likely rushed and busy so anything should be as clear and simple... they should in any case ask about allergies.

[CarlaB]

For me it would depend on the situation. If it were a doc I was going to be seeing regularly, I would tell him gluten intolerance and educate him on what I meant. If I was just trying to be safely fed in a hospital, I would tell them celiac disease, then still watch everything they gave me.

[oceangirl]

For me it would depend on the situation. If it were a doc I was going to be seeing regularly, I would tell him gluten intolerance and educate him on what I meant. If I was just trying to be safely fed in a hospital, I would tell them celiac disease, then still watch everything they gave me.

Thank you ll for your replies!

lisa

[ravenwoodglass]

If I was just trying to be safely fed in a hospital, I would tell them celiac disease, then still watch everything they gave me.

I'd watch what they gave me too------as they take the full tray away and I pull out my gluten-free stash of food. I've worked in a hospital's nutritional services dept and would never trust them to feed me or my kids. Even if they know how to feed us the CC issue is just too much for me.

[againstthegrain]

So this is an interesting quesiton you posed. I usually say that I have celiac. or to confuse people further I say "I have sprue".. That usually leads them to accommodate me.

But I must share with you my experience: I became very depressed after having been diagnosed with sprue and had to be hospitalized (I could not adjust to the diet. I found it too stressful. I actually think I was having a gluten withdrawl and now consider myself to be "in recovery" from gluten).... So at the hospital I was in for 9 days... a) there was no way I was eating anything they gave me... ALL of it looked like it had some gluten in it... except for the fruits and rice cakes and Kozy Shak Rice Pudding. That was all I ate for 9 days. And because I was not eating any of the other food, they put me on a calorie count which drove me NUTS. Why? Because if they had acutally given me gluten-free food that I could eat instead of the other stuff, I would have been eating.

One nurse even said when I told her that I was gluten free, replied with "GLUE FREE? .... YES. GLUE FREE. I WANT NO GLUE IN MY FOOD. NONE. IT MIGHT CAUSE MY INSIDES TO STICK TOGETHER.

[oceangirl]

So this is an interesting quesiton you posed. I usually say that I have celiac. or to confuse people further I say "I have sprue".. That usually leads them to accommodate me.

But I must share with you my experience: I became very depressed after having been diagnosed with sprue and had to be hospitalized (I could not adjust to the diet. I found it too stressful. I actually think I was having a gluten withdrawl and now consider myself to be "in recovery" from gluten).... So at the hospital I was in for 9 days... a) there was no way I was eating anything they gave me... ALL of it looked like it had some gluten in it... except for the fruits and rice cakes and Kozy Shak Rice Pudding. That was all I ate for 9 days. And because I was not eating any of the other food, they put me on a calorie count which drove me NUTS. Why? Because if they had acutally given me gluten-free food that I could eat instead of the other stuff, I would have been eating.

One nurse even said when I told her that I was gluten free, replied with "GLUE FREE? .... YES. GLUE FREE. I WANT NO GLUE IN MY FOOD. NONE. IT MIGHT CAUSE MY INSIDES TO STICK TOGETHER.

If that weren't so pathetically sad, it's pretty funny. How can medical people not be at least dimly aware of this concern by now? I think, like you and Carla, I would feel out the situation and in a hospital setting just say "celiac'. Thanks everyone for your help!

lisa

[queenofhearts]

Honestly, I don't even think saying Celiac would help that much.

As to glue, I did have to give up the wheat paste I sometimes used in my artwork! (No, I wasn't eating it...)

[angel-jd1]

One nurse even said when I told her that I was gluten free, replied with "GLUE FREE? .... YES. GLUE FREE. I WANT NO GLUE IN MY FOOD. NONE. IT MIGHT CAUSE MY INSIDES TO STICK TOGETHER.

Thanks for the laugh!!

-Jessica

[oceangirl]

Thanks for the laugh!!

-Jessica

Good point, Leah. Ah well...sigh....

lisa

[heathen]

i just left the hospital after visiting my grandfather--heart trouble. i wandered down to cafeteria but didn't get anything to eat. i could tell the chance of being glutened was too high! that got me thinking... if i'm in some sort of accident, all alone, and unable to tell them i'm celiac, am i up a creek? i have my dining card in my purse, but what else is there?

thankfully, my gluten reactions aren't that bad yet, but i would rather not go there if it's avoidable.

[prinsessa]

One nurse even said when I told her that I was gluten free, replied with "GLUE FREE? .... YES. GLUE FREE. I WANT NO GLUE IN MY FOOD. NONE. IT MIGHT CAUSE MY INSIDES TO STICK TOGETHER.

When I told my dentist I was gluten intolerant, she said "what is gluten? Ohhhh....like the stuff you make jello with?" At first I had no idea what she was talking about, then I realized she meant gelatin.

[Debbie65]

Thank you all.

Yes, I agree, I would never trust any food in a hospital; it's clear how much even medical people don't know or understand regarding this issue. I appreciate all your thoughts. Basically, as we all already know- we're on our own. Man, we need more researchers.

lisa

Oh yes, after my endoscopy/colonoscopy & coming out of anesthesia, (as someone who had a positive tTg), the nursing staff offered me peanut butter crackers! It's just off the charts, isn't it?!!!

I was offered steak and kidney pie!!!

[skbird]

I told my dental hygenist that I am gluten intolerant and she asked if I could eat Ezekiel bread. While no, I can't, she was acutally thinking, which I was pleased by. We then had an interesting conversation about how to make gluten free bread that rises.

I'm bummed a doctor would say "that's the diagnosis of the day..." well hell yeah! If one in 133 have it and doctors think it's more like one in 1000 or worse, of course all sorts of people are going to be diagnosed now and it would appear to be the diagnosis of the day - because they haven't been doing their jobs! Sheesh!

Stephanie