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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,339
    • Most Online (within 30 mins)
      7,748
    Teresa King
    Newest Member
    Teresa King
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      IBS-D vs Celiac

      By par18 · Posted

      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
×
×
  • 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.