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 rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,132
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.