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

Should A Warning Label Be Made For Celiacs?


Finally-45

Recommended Posts

Finally-45 Contributor

I will be having oral surgery next month. I'm wondering whether dental hospitals like to be aware that a patient has Celiac in a similar manner that they like to be aware of diabetes, latex allergies, and so on.

Celiac/gluten sensitivity hasn't been on any of the questionnaires so far, I'm not sure if that's because the awareness of Celiac is still growing or if there really isn't anything to worry about.

I noticed my pharmacy also doesn't ask about Celiac, nor did they seem to care when I brought it up. Yet, I've read on some posts that people are careful to buy gluten-free capsules for OTC products. Are prescription products automatically gluten-free?


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Put it under allergy. Then write out wheat, rye, barley, oats. Wheat & barley are probably the only things that might be a concern. Then, don't assume that they get that that applies to dental stuff they put in your mouth. Call the dentist and ask if they have checked for gluten. My dentist had checked and had copies of letters from companies.

With pharmacies- before you pick up & pay for the medicine, ask what it is & for the compnay name. They may also have a phone number for you. Sometimes there is a drug number of some sort they can give you. Call & find out for yourself if its not on this list:

www.glutenfreedrugs.com

pricklypear1971 Community Regular

If you have DH make sure you list iodine as am allergy. Dentists can use iodine in packing.

Meatballman Rookie

Prescription meds. are not always gluten free.Sometimes the pharmacy is not even aware and it becomes necessary to call the manufacturer.It can be a pain but I check with each refill.Believe it or not sometimes they change the ingredients from time to time.So double check just to be safe.

BabsV Enthusiast

And be careful with 'generic' prescriptions. For one of the medicines (birth control pills) I take the name brand is gluten free but at least a couple of the generics aren't. For maintenance drugs like this I use a mail order pharmacy and they were really responsive -- the pharmacist I spoke with on the phone was really attentive and understood the whole issue, he tagged my file so that a big warning comes up saying not to dispense anything containing gluten, etc. They were great compared to one of the pharmacies near my house...they didn't seem to care one whit about the issue. I'm not going back there for prescriptions, ever. I luckily have several more choices of pharmacies to choose from!

  • 2 weeks later...
DerpTyler Newbie

I am pretty sure the reason why they're not too worried is because celiacs are not technically allergic to gluten, correct me if im wrong, but we are intolerant to it. like what I mean is that if you are extremely allergic to latex you could have a severe reaction and possible die whereas, if they give you gluten you may be sick for a day or two.

Di2011 Enthusiast

I am pretty sure the reason why they're not too worried is because celiacs are not technically allergic to gluten, correct me if im wrong, but we are intolerant to it. like what I mean is that if you are extremely allergic to latex you could have a severe reaction and possible die whereas, if they give you gluten you may be sick for a day or two.

and die of digestive / bowel cancer like my grandfather


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



Celiac.com Sponsor (A8-M):



Celtic Queen Explorer

Unfortunately I don't think a lot of doctors and nurses take this kind of stuff seriously. I went to the dermatologist last week and wrote on my new patient form that I was allergic to Novacaine, wheat, barley, oats and rye. (I know I'm not "allergic" but I thought that was the easiest way to get across that I couldn't have any.) The nurse didn't even look at my record. Right before she was about to stick me with numbing agent, she asked me if I was allergic to anything. I told her all of the above. She immediately put the needle down and said she's come back with a new numbing agent that didn't have Novacaine.

If she had bothered to look at my record, she would have seen that I was allergic to Novacaine. Luckily she thought to ask. And fortunately if she had given it to me, I wouldn't have died of any sort of anaphalactic shock or anything like that. I just would have been sporting some pretty hives for a while.

Before I left I noticed that she had written "Allergic to Novacaine" on my folder in big letters. I kind of frustrated me that she didn't put anything on there about the wheat, etc. Probably because she's never even considered if there's wheat in any of the medicines or products they use. I go back next week and will definitely get her to add it and do some education to teach her why it's important.

T.H. Community Regular

we are intolerant to it. like what I mean is that if you are extremely allergic to latex you could have a severe reaction and possible die whereas, if they give you gluten you may be sick for a day or two.

I think that's the general thought for most ER's, pharmacists, doctor offices, and such, when they see the celiac disease label.

That's not actually the case, however. Some celiacs have symptoms for a day or two, but their gut is damaged, which means they are nutrient deficient until that heals, which can be days, or weeks, or even months, depending on the severity of the damage. There are all sorts of issues that can come up because of that.

And for some of us, the symptoms are much more severe than a day or two of illness. For example, I'm ill for weeks, sometimes over a month, just from one round of gluten cc. Some people suffer life threatening symptoms, like excessive bleeding in the gut. It's rarer than the typical gut discomfort, but not unheard of.

I used to put down celiac disease on medical charts, but doctors who aren't specialists in celiac disease specifically don't really understand just what the results can be, usually, and so I completely understand putting down 'allergy' at this point. People are trained to think that allergy will have more severe consequences. Since my reactions are severe consequences, I'm comfortable putting it down, now, when I go to an ER.

susiecat Newbie

unfortunately, that happens quite often. my husband is terminally ill and he's been through many long trips to mayo clinic. although, i can say at mayo clinic they are better than most at paying attention to charts regarding allergies and such, occassionally problems like this happen there too. you will always have to mention what you are allergic to BEFORE you are given something, don't wait for them to ask. =)

susiecat Newbie

I do think there should be a warning label for celiacs. Possibly if we band together and press on the FDA, we may get that accomplished????

DerpTyler Newbie

and die of digestive / bowel cancer like my grandfather

well obviously if you visited the "docter" on a very regular basis it would be harmful in the long run but, if it was a one time thing you shouldnt go into an Anaphylactic Shock and die if you ingest some gluten. now dont get me wrong i disagree that its not taken into account but i guess they just have other more severe things to worry about

Gemini Experienced

I will be having oral surgery next month. I'm wondering whether dental hospitals like to be aware that a patient has Celiac in a similar manner that they like to be aware of diabetes, latex allergies, and so on.

Celiac/gluten sensitivity hasn't been on any of the questionnaires so far, I'm not sure if that's because the awareness of Celiac is still growing or if there really isn't anything to worry about.

I noticed my pharmacy also doesn't ask about Celiac, nor did they seem to care when I brought it up. Yet, I've read on some posts that people are careful to buy gluten-free capsules for OTC products. Are prescription products automatically gluten-free?

As far as the oral surgery goes, I wouldn't worry too much about that. I have had many oral surgeries since going gluten-free 6 1/2 years ago and have never been glutened once. The products used for surgery, unless you have an allergy to them, do not contain gluten. I am referring to injectables used as numbing agents. Even the stuff they use to pre-numb the site to be injected is gluten-free. For your reference, I am an extremely sensitive, full blown Celiac who reacts to tiny amounts of gluten or CC...never had a problem at the oral surgeons office.

If by any small chance you were to be glutened, like many have said, it isn't anaphylaxis and the worst thing that would happen is you would have your usual gluten reaction. You would recover within a few days and your small intestine would not be damaged for weeks on end and you wouldn't suffer from nutrient deprivation. That's a bit of overkill.

You DO have to be careful of meds because some contain gluten components. I would expect that they will give you an antibiotic and a pain killer and I can recommend the TEVA brand of antibiotics..they are gluten free but make sure to check each Rx here on the forum or by calling the company. I always use Vicodin for the pain because it is gluten-free. It's easier on the tummy also.

Don't rely on anyone but yourself to determine if a product is gluten-free. Doctors, dentists and pharmacists are generally clueless about these things. Or you can ask here as this forum is one of the most reliable places to get information on meds. We know what we can take! Relax and don't worry...you'll be fine! Good luck with your surgery.

Archived

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

  • 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 replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,136
    • Most Online (within 30 mins)
      7,748

    GFTom
    Newest Member
    GFTom
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.