Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Where Your Contribution Counts!
    eNewsletter
    Support Us!

"glutened"? "contaminated"? What Do You Call It?


melikamaui

Recommended Posts

melikamaui Explorer

A friend recently told me that the word I use when my sons or I accidentally get gluten was really scary. We say that we have been "contaminated" and it never occurred to me that could be construed as frightening until she said it. She pointed out that it was very technical or medical, almost like poison or a nuclear leak, and it freaked her out. I had never thought of it like that. It just is what it is. We get contaminated with gluten. But now, seeing it through her eyes, it makes me wonder...is there a better word out there? Something less clinical and easier for people to handle?

I don't want to dumb down what happens when we accidentally ingest gluten. I'd just like to use a word that is less terrifying to our friends who try so hard to make things safe and wonderful for us.

So what word do you use? "Glutened" has never sounded right to me, but maybe I'll start using it. It does seem less threatening than "contaminated".

edited to fix a typo

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



lilu Rookie

Ar our house, we say that food got contaminated. When talking about our internal experience ingesting contaminated food, we say glutened.

Link to comment
Share on other sites
Coinkey Apprentice

I use a wide variety of words depending on the audience and my mood at the time. Here's a nice little list for you:

I'm currently reacting really badly to something I ate

I ate something that I clearly shouldn't have

Glutened

Cross-Contaminated

CC'd

The gluten got me

Poisoned with gluten

Never again!

WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!

and my most recent "I must be allergic to children I'm getting rashes ALL the time"

Link to comment
Share on other sites
Skylark Collaborator

Like Coinkey I have a bunch of phrases.

I ate some gluten and I don't feel good.

I've been gluten poisoned.

I'm having a gluten reaction.

My food was cross-contaminated with gluten.

Uh oh, I think there was wheat in that ____.

I must have eaten something that doesn't agree with me.

...and if I'm in a foul mood becasue someone lied to me about ingredients, an impressive string of swear words.

Link to comment
Share on other sites
melikamaui Explorer

Thanks for the help! I am going to work in the more gentle language. :D

Link to comment
Share on other sites
cassP Contributor

i say i got glutened... i heard it on here- and it stuck. my friends think it's pretty hilarious.. i like words that are kinda made up B)

Link to comment
Share on other sites
Reba32 Rookie

why dumb it down for them? You are being contaminated, if that word frightens them, then perhaps it will encourage them to be careful when parparing food for you. To say you've "been glutened" is probably meaningless to anyone but another Celiac.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



melikamaui Explorer

why dumb it down for them? You are being contaminated, if that word frightens them, then perhaps it will encourage them to be careful when parparing food for you. To say you've "been glutened" is probably meaningless to anyone but another Celiac.

That's what I think too. The only reason I would want to dumb it down is because I really care about these friends and I don't want to freak them out. The friend that said this to me had very noticeably stopped inviting us over to her home. She admitted that she was terrified of poisoning us and that was due in large part to the language I choose. The word "contaminated" really scared her. I don't want people to feel like they're going to kill us by having us in their homes. That is the only reason I want to change the word.

Link to comment
Share on other sites
love2travel Mentor

To my knowledge I have only been glutened glutenated or contaminated once in these past six months but I do not know (and I do not intend to deliberately find out). I do not think "contaminated" is too harsh - it may be the jolt some folks need! :) It is like poison to our bodies, after all. Probably a bit better than walking around wearing a poison or biohazard symbol t-shirt! :lol:

Link to comment
Share on other sites
melikamaui Explorer

To my knowledge I have only been glutened glutenated or contaminated once in these past six months but I do not know (and I do not intend to deliberately find out). I do not think "contaminated" is too harsh - it may be the jolt some folks need! :) It is like poison to our bodies, after all. Probably a bit better than walking around wearing a poison or biohazard symbol t-shirt! :lol:

:D Funny!

My youngest is super sensitive so there has been a lot of trial and error with him. He has been contaminated quite a few times in the last year I am sad to say. Twice really horribly, and the rest were "light" contaminations but made him sick none the less. We have found that he cannot eat anything made on shared equipment with wheat and that took a long time to figure out. "But it says gluten free!" he would cry. Now that we know how sensitive he really is he gets contaminated a lot less. And sometimes I do feel like putting a T-shirt with a big poison symbol on him! :P

Link to comment
Share on other sites
love2travel Mentor

:D Funny!

My youngest is super sensitive so there has been a lot of trial and error with him. He has been contaminated quite a few times in the last year I am sad to say. Twice really horribly, and the rest were "light" contaminations but made him sick none the less. We have found that he cannot eat anything made on shared equipment with wheat and that took a long time to figure out. "But it says gluten free!" he would cry. Now that we know how sensitive he really is he gets contaminated a lot less. And sometimes I do feel like putting a T-shirt with a big poison symbol on him! :P

Oh, poor guy. It is sad when the words "gluten free" sometimes can be so misleading. I recently saw a product state "Gluten Free" on the front but "wheat" was listed under the ingredients. I know it must be under 20 ppm but I don't care. If I can help it no wheat is going to cross these lips of mine.

Maybe we should make some bright orange poison shirts! We would all know each other on sight. :D

Link to comment
Share on other sites
anabananakins Explorer

i say i got glutened... i heard it on here- and it stuck. my friends think it's pretty hilarious.. i like words that are kinda made up B)

Hee, me too Cass and my friends find it hilarious too.

I would say "I was glutened" but if I'm worried about a food I'd say "no, I won't have any because it's probably contaminated". I want people to realise that take even the chance of a dusting of "poison" seriously. They wouldn't eat something if there was the slightest chance it was contaminated with rat poison, so I think using the term contaminated helps get across how seriously I take gluten contamination.

Link to comment
Share on other sites
Marz Enthusiast

I think of it as "gluten poisoning" because it's not unlike real food poisoning :/ I would also use the word "contamination", don't see anything wrong with that :)

"Glutening" is probably the kindest way to phrase it, if people are really that sensitive about the details. They wouldn't want to hear about the result of a glutening then I take it - also too scary? ;)

Link to comment
Share on other sites
melikamaui Explorer

I think of it as "gluten poisoning" because it's not unlike real food poisoning :/ I would also use the word "contamination", don't see anything wrong with that :)

"Glutening" is probably the kindest way to phrase it, if people are really that sensitive about the details. They wouldn't want to hear about the result of a glutening then I take it - also too scary? ;)

I really like "gluten poisoning". That gets the point across with enough seriousness but still has a softer edge to it than "contaminated". Thanks!

Link to comment
Share on other sites
cassP Contributor

u know- i actually use "glutened" when i talk about what might happen to me... but i DO use the word "contaminated" when i talk about the food itself... like when my mom accidentally put the leftover rice pasta in the same container with the spelt pasta- then i say- "ya, i cant eat it, cause the food could be contaminated"

Link to comment
Share on other sites
domesticactivist Collaborator

It's good your friend is taking it seriously. If you think she's afraid to invite you over, why don't you talk with her about it? Reassure her that you appreciate her concern for your health, and that you are comfortable visiting as long as you take the steps you need to take to be safe. For us the basics are washing hands and eating only the food we bring (usually with our own dishes, too). Maybe she just needs to know that *you* are comfortable, and that you feel safe with her, especially given her awareness.

Link to comment
Share on other sites
melikamaui Explorer

It's good your friend is taking it seriously. If you think she's afraid to invite you over, why don't you talk with her about it? Reassure her that you appreciate her concern for your health, and that you are comfortable visiting as long as you take the steps you need to take to be safe. For us the basics are washing hands and eating only the food we bring (usually with our own dishes, too). Maybe she just needs to know that *you* are comfortable, and that you feel safe with her, especially given her awareness.

I did talk to her about it and it went really well. I think she was scared to death because when my son was first diagnosed I was scared to death. I was freaked out (because he had been SO sick) and I was terrified that every little thing was going to make him sick again. Couple that with the use of a "scary" word and she got spooked. I totally understand why it happened and I'm incredibly grateful that she cares so much about us.

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,501
    • Most Online (within 30 mins)
      7,748

    fine one
    Newest Member
    fine one
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • SuzanneL
      It was tTG IGG that was flagged high. I'm not sure about the other stuff. I'm still eating my normal stuff. 
    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
×
×
  • Create New...