Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

oceangirl

Recommended Posts

oceangirl Collaborator
oceangirl
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


celiacgirls Apprentice
celiacgirls
Posted

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 Collaborator
oceangirl
Posted
  • Author
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
Guest Evelyn&Ric
Posted

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 Explorer
queenofhearts
Posted

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 Collaborator
oceangirl
Posted
  • Author
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 Contributor
loraleena
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted
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 Enthusiast
CarlaB
Posted

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 Collaborator
oceangirl
Posted
  • Author
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 Mentor
ravenwoodglass
Posted
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. <_<:D:lol: 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 Newbie
againstthegrain
Posted

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 Collaborator
oceangirl
Posted
  • Author
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 Explorer
queenofhearts
Posted

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 Community Regular
angel-jd1
Posted
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. :)

:lol::lol:

Thanks for the laugh!!

-Jessica :rolleyes:

oceangirl Collaborator
oceangirl
Posted
  • Author
:lol::lol:

Thanks for the laugh!!

-Jessica :rolleyes:

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

lisa

heathen Apprentice
heathen
Posted

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 Contributor
prinsessa
Posted
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. :rolleyes:

Debbie65 Apprentice
Debbie65
Posted
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 Contributor
skbird
Posted

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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    2. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    3. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
    4. Scott Adams
      - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      3

      New here

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are fee...
    5. KathyR37
      - KathyR37 posted a topic in Coping with Celiac Disease
      3

      New here

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,812
    • Most Online (within 30 mins)
      7,748
    Papa Emeritus 79
    Newest Member
    Papa Emeritus 79
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New here

      By trents · Posted

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      New here

      By KathyR37 · Posted

      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.