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. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract. They can stimulate IgG antibody production as your blood test shows. Even beans have lectins. You've simply eaten too many lectins and irritated your digestive tract. You may want to allow your digestive tract...
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg). Both are gluten free and free of other allergens. I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25". It's gluten and allergen free and made in the USA. It's a powder form of Vitamin A. ...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      results from 13 day gluten challenge - does this mean I can't have celiac?

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding. I will have my first appt with a GI dr on March 4th I will not eat gluten again - at least not on purpose ...
    5. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      My journey is it gluten or fiber?

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Klairep
    Newest Member
    Klairep
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      What Thiamine Hydrochloride brand do you take? Is it like the other vitamins I have added? What brand Tryptophan and amount do you take. Thanks
×
×
  • 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.