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!

Gluten Free...just Because


NorthernElf

Recommended Posts

NorthernElf Enthusiast

Ok...I am stupid for this...glutened myself (mildly).

My daughter's best friend...for some reason...has gone gluten free. I just took my daughter over to her place & her friend runs out & gives me a gluten free peanut butter chocolate iced cookie. The icing is on the bottom. I take a bite & thank her...then just hold it. Dang if it doesn't "get" me. At least I didn't eat any more. I'm sure it was made on gluteny pans.

Really...why do folks go gluten-free ? Especially kids ? I don't know the mom real well..she is kind of a different duck but really...why go to the expense of gluten-free & effort ?!!?!! She is not really gluten-free...just "low gluten-free". The girls (my daughter, her, et al) all went out the other day & she had some soup...well, I can't go out & have soup because of gluten. Hmmm... no celiac diagnosis. Guess to me the thing is that she really is having gluten with not effect but insists on gluten-free...ok, it's not a big deal except...WHY?

It's not even for weight loss - I know many folks do it just for that. This girl is thin & very active. Ok...maybe it's gluten sensitivity only ?

Anyway...been reading about gluten-free diets...people reducing it...heck, even my own hubby has found reducing gluten is good for his digestive tract. So...I guess I'm just ranting...because I HAVE to...repeat, HAVE to...eat gluten-free or I might as well give myself the flu.

Guess I just think the trending thing reduces our cred...we aren't doing it for fun or novelty...we gotta or we're miserable & sick.

Aside...went to a cupcake place today that has gluten-free cupcakes as well as 'regular' ones....used to be on a plate separate, now they are under the glass with the gluten ones,,,guess I won't have any anymore !

Rant over....;-)

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



GlutenFreeManna Rising Star

I can get on board with you about the cupcake place rant! A new bakery with "gluten-free" baked goods opened up recently in my area. I emailed them to ask how "gluten free" there gluten free items are--i.e. what measures do they take to prevent cc, etc. The reply said that they do use the same sifters, mixers and pans for their gluten free flour as for their regular flour products, they also bake gluten-free and regualr items on the same day and they do not recomend anyone with a "serious gluten allergy" eat their gluten-free products. In other words they know nothing and are just making them for the people being trendy! Grr...I am not a doctor diagnosed celiac but I can't eat at this bakery because they admit they don't have good cc prevention. I give them props for admitting it, but really why do they bother?

I don't know what's up with your friend--maybe she thinks she has a gluten sensitivity but didn't do any research about how to do the diet? Maybe her symptoms are mild and so she's not careful? I have met at least one doctor-diagnosed celiac that doesn't follow a strict gluten-free diet because their reactions are not severe and they aparently don't care about the cancer risk. I'm not dr diagnosed but my reactions are severe and I have to be very strict. So I doubt this is just about diagnosis vs no diagnosis. It's due to a trend or it's ignorance, IMO. I do agree it's highly annoying when you see someone doing it half way and putitng your health in danger though. All you can do it try to eduacte them I guess (and don't eat any more of their "gluten-free" cooking obviously)!

Link to comment
Share on other sites
WinterSong Community Regular

A little bakery rant of my own: I was looking for a dessert place to go to with a friend today. I found a bakery with gluten free items, and luckily I called them before going. When I asked how careful they are with their gluten free products they said, "Oh not at all." The woman told me how often times some wheat flour gets mixed in with their gluten-free products because things in the kitchen aren't separated. And not only do they keep gluten and gluten-free products next to each other but they often touch. How on earth can they call it gluten free?!?!?! People are going to get sick! :angry:

It really makes me worried to go out to eat when I think that other restaurants might not be taking their gluten free dishes seriously....

On another note, I really don't understand the gluten-free diet craze. Why do it if you don't have to? I'm enjoying all of the great foods I've discovered, but yes things would certainly be much easier if I didn't have Celiac. Plus, aren't there vitamins/minerals that people begin to lack once they go gluten-free? Why deprive yourself of those?

<_<

Love to all fellow Celiacs

Link to comment
Share on other sites
K8ling Enthusiast

Ugggh annoying on all accounts. This is why we can't get no respect (to quote Rodney Dangerfield) :rolleyes:

Link to comment
Share on other sites
Monklady123 Collaborator

I know one person who is gluten free because "it makes me feel better" she says. Who knows, it might. But... she isn't really gluten "free" -- she's what I call "gluten lite". She doesn't eat pasta or bread. Except when she's out somewhere like Olive Garden when she'll eat the rolls because "I can't resist." Otherwise she never checks labels for wheat flour or barley malt or any of the other things we have to keep our eyes open for. She orders the grilled seasoned chicken and doesn't worry about the seasoning, or what else has been cooked on the grill. She might pick her croutons out of the salad, or maybe not if it's "too much trouble."

Yes, it annoys me because I feel like other people might not take me as seriously if we're out together. I actually don't go out to eat with her much because of this.

Link to comment
Share on other sites
Chiana Apprentice

I know one person who is gluten free because "it makes me feel better" she says. Who knows, it might. But... she isn't really gluten "free" -- she's what I call "gluten lite". She doesn't eat pasta or bread. Except when she's out somewhere like Olive Garden when she'll eat the rolls because "I can't resist." Otherwise she never checks labels for wheat flour or barley malt or any of the other things we have to keep our eyes open for. She orders the grilled seasoned chicken and doesn't worry about the seasoning, or what else has been cooked on the grill. She might pick her croutons out of the salad, or maybe not if it's "too much trouble."

Yes, it annoys me because I feel like other people might not take me as seriously if we're out together. I actually don't go out to eat with her much because of this.

I think your friend is confusing 'gluten-free' or 'gluten-lite' with 'carb-lite'. :/

I'm mortified by the rash of so-called 'gluten-free' restaurant options.

Link to comment
Share on other sites
Cattknap Rookie

There was a AP article a couple of weeks ago about athletes who are going gluten free because they feel that they play better without gluten. What people do is their own business - why get so upset?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



WinterSong Community Regular

Sure if they believe that it makes them play better, then that is their choice. It's a health move for their career.

What annoys me is when people claim they are completely gluten-free but are only following the diet halfway. With the fad diet, people don't necessarily worry about spices and CC, and it makes us look like we're neurotic in comparison. It makes me sad to think that friends/loved ones may have a hard time understanding our needs because of this.

And like I said in my earlier post, some restaurants aren't taking it seriously. It can be viewed as just a diet fad and a way to make money. :(

Link to comment
Share on other sites
srall Contributor

Playing devil's advocate here: My house is gluten free because my daughter and I CANNOT eat gluten. So I'd call my husband gluten lite and he is definitely benefiting from it. Much less gas and stomach pain and he's lost a lot of weight. Who knows, maybe he needs to be all the way gluten free, but he is really benefiting from eating less. We have so much gluten in our culture I agree that people need to eat less than they are.

eta: So I wrote the above about an hour ago, and I also have to say that I NEVER feel like people are taking me seriously in restaurants. And reading about that A-hole chef in Colorado just freaked me right out. So I almost always eat at home unless we're traveling. I don't know what it's going to take for all of us to be taken more seriously. I was sort of hoping the gluten free fad would bring more awareness.

Link to comment
Share on other sites
Monklady123 Collaborator

There was a AP article a couple of weeks ago about athletes who are going gluten free because they feel that they play better without gluten. What people do is their own business - why get so upset?

Well, just speaking for myself and my friend who I mentioned above -- I get upset because she says she's gluten free, and other people believe she is. So then we all go out and she orders the grilled chicken sandwich, which I know for a fact has gluten in the seasoning because I talked to the chef on the phone. So then when it's my turn to order I get a plain salad. "Oh why don't you have such-and-such?" someone will ask. I reply "because it has gluten in the seasoning" or I'm giving the waiter the third degree... and someone might inevitably say "but so-and-so is eating it."

Now, I have pretty much educated my friends. But this "gluten lite" attitude, I feel, is dangerous for waiters and restaurants. People like my friend say "I'd like the grilled chicken sandwich but I can't have gluten so could I just have it on my plate without the bread?" And if the waiter doesn't know better he might think that gluten free = no bread.

That's why I care.

Link to comment
Share on other sites
WinterSong Community Regular

Well, just speaking for myself and my friend who I mentioned above -- I get upset because she says she's gluten free, and other people believe she is. So then we all go out and she orders the grilled chicken sandwich, which I know for a fact has gluten in the seasoning because I talked to the chef on the phone. So then when it's my turn to order I get a plain salad. "Oh why don't you have such-and-such?" someone will ask. I reply "because it has gluten in the seasoning" or I'm giving the waiter the third degree... and someone might inevitably say "but so-and-so is eating it."

Now, I have pretty much educated my friends. But this "gluten lite" attitude, I feel, is dangerous for waiters and restaurants. People like my friend say "I'd like the grilled chicken sandwich but I can't have gluten so could I just have it on my plate without the bread?" And if the waiter doesn't know better he might think that gluten free = no bread.

That's why I care.

Well said.

Link to comment
Share on other sites
mushroom Proficient

Well, just speaking for myself and my friend who I mentioned above -- I get upset because she says she's gluten free, and other people believe she is. So then we all go out and she orders the grilled chicken sandwich, which I know for a fact has gluten in the seasoning because I talked to the chef on the phone. So then when it's my turn to order I get a plain salad. "Oh why don't you have such-and-such?" someone will ask. I reply "because it has gluten in the seasoning" or I'm giving the waiter the third degree... and someone might inevitably say "but so-and-so is eating it."

Now, I have pretty much educated my friends. But this "gluten lite" attitude, I feel, is dangerous for waiters and restaurants. People like my friend say "I'd like the grilled chicken sandwich but I can't have gluten so could I just have it on my plate without the bread?" And if the waiter doesn't know better he might think that gluten free = no bread.

That's why I care.

I agree entirely. I once ate at a place with a gluten free menu, with a totally untrained waitperson. I ordered the Caesar salad (as usual....:( ) and told him to be sure not to put croutons on it. He actually asked me, "if it doesn't have croutons is it gluten free?" I just said, "in this instance, yes, but don't let that be your rule." and advised the manager on the way out that the young lad needed some training :P

People who water down what "gluten free" means do all of us a great disservice because they lessen respect for the condition and make our food less safe.

Link to comment
Share on other sites
Monael Apprentice

I am newly on a gluten-free diet. I have not been diagnosed but I have such a huge relief in my symptoms that I really don't care whether I have Celiac disease or if I am gluten intolerant or whatever else it may be. I just know that I feel so much better that I am disappointed that I didn't know this many years ago because I could have stopped suffering a long time ago.

I was grocery shopping yesterday and was amazed at how they are now starting to label things gluten free on the shelves to make it easier to locate them. And I was thinking to myself how much harder it would have been for me if I did know about this years ago, because it is so hard to figure out all the ins and outs.

Until I went into deep research mode, I didn't realize how many items that you wouldn't think had gluten in them had gluten in them. For instance, spices... And malt. Not to mention the cross contamination issue. It just isn't something someone would automatically know.

On the one hand I could see how it would be irritating to have someone who doesn't really need to be gluten free, take it so casually. But in reading this board and other things online, I have discovered that there are people who actually have a confirmed diagnosis of Celiac disease eating gluten because they don't want to give it up.

I think that this could be a good thing in the long run if there can be awareness of all the ways gluten can get into the food. Until I saw a post here, I didn't even think about separating butter and mayo. And if I hadn't seen that, I don't think it would have occurred to me on my own.

Link to comment
Share on other sites
Kim69 Apprentice

When I was first dx I told several work colleagues that i had coeliac disease and couldnt eat gluten most of whom demonstrated polite interest or personal knowledge, however one woman commented that going gluten-free "is all the rage now", as if I had just told her that I was starting the Atkins diet. Yeh right, like I would do this if I had a choice!

Link to comment
Share on other sites
krystynycole Contributor

I hear you! It's one of the most annoying things because it devalues our diagnosis. It makes it seem like we are over reacting crazy people who are out of control, but in reality we are no different than someone with a peanut allergy expect wheat is in more things than peanuts are. Granted our throats won't close up, but we still have severe consequences from the food.

I ranted on this once and one of my family members told me, what's the big deal, many doctors feel wheat is toxic to everyone anyways. I wanted to punch, but I was kind and did not...

I also have a coworker who's sister is ceilac. As a teacher we get food, often sweets, donated to us for appreciation in our teacher's lounge. When I long for just a bite of one of the sweets everyone else is eating my coworkers response is "my sister is celiac and she cheats all the time, just eat a piece." Um what?! No thank you...I'd rather not be up all night sick!

I do not understand why some people are just totally and completely insensitive.

Link to comment
Share on other sites
hnybny91 Rookie

I had someone tell me a few weeks ago that they have Celiac Disease too. They also claimed that they can not eat casein (just like me.) Just earlier that evening this person had been eating cheese stick and she regularly eats things like cookies and even regular pizza. Um, you do NOT have celiac disease unless you are one of those that has no symptoms and just choose to ignore it. She is always talking about the health benefits of this and the health benefits of that so you would think if she really couldn't eat gluten she wouldn't, you know?

Link to comment
Share on other sites
sodakgal Newbie

I went out to eat with a bunch of friends last week and ordered a salad with tuna (no spices). One friend said to me "wow, with this diet you are on, you are really going to lose a lot of weight". I told her that I hoped not, since the past year before I was diagnosed, I had already lost enough weight I was beginning to look like a cancer patient. At that moment all my friends seemed quite interested in what exactly Celiac was, and it ended up being a teaching moment. I think they understood.

Kendrea

Link to comment
Share on other sites
Fire Fairy Enthusiast

I hear you! It's one of the most annoying things because it devalues our diagnosis. It makes it seem like we are over reacting crazy people who are out of control, but in reality we are no different than someone with a peanut allergy expect wheat is in more things than peanuts are. Granted our throats won't close up, but we still have severe consequences from the food.

I ranted on this once and one of my family members told me, what's the big deal, many doctors feel wheat is toxic to everyone anyways. I wanted to punch, but I was kind and did not...

I also have a coworker who's sister is ceilac. As a teacher we get food, often sweets, donated to us for appreciation in our teacher's lounge. When I long for just a bite of one of the sweets everyone else is eating my coworkers response is "my sister is celiac and she cheats all the time, just eat a piece." Um what?! No thank you...I'd rather not be up all night sick!

I do not understand why some people are just totally and completely insensitive.

I've had several people tell me they know other Celiac's or Gluten Intolerant people who are no where near as "neurotic" as I am. I was even told by a friend of the family that his wife is Celiac and she accepts our Church's regular Communion so it should be fine for me. I really want to find all these gluten lite people and explain to them how much trouble they cause people like me.

I've found two kinds of people at work. The ones who see how much weight I've lost and say, "I'm going to have to go gluten free". I tell them how hard it really is and how I will never be able to eat anything with gluten ever again. And then there are the ones who say, "I'd rather die." The last was my brother's response too and I am 99% certain he has Celiac. I tell them it's very hard but it's broadened my horizons to try things I've never tried before.

Link to comment
Share on other sites
sodakgal Newbie

Oh... I just thought of something funny. I also have a few gluten free friends who have chosen to go gluten free because they think it will help their kids, and it does, so the whole household it gluten free, but none of them have Celiac. When I told these friends that i was Celiac, they were almost envious. Like I had just hit the jackpot of gluten intolerance. I guess i thought it was a funny reaction, and I wasn't offended, but then again, I am new to this whole thing, so I am sure at some point I am going to have a bad experience with CC, or friends, or restaurants. Just thought I would share.

Kendrea

Link to comment
Share on other sites
NorthernElf Enthusiast

Why so upset....

Well, not really upset - annoyed ? Someone used the word 'devalued' - that about sums it up. I was the original poster - got zinged by a "gluten-free" cookie that my daughter's friend made...on regular pans. So the annoying thing is that someone claiming to be gluten-free isn't...doesn't have to be, at least not too carefully. Someone like me (and many of us) have to be pretty meticulous about being TRULY gluten free.

Hard enough as it is to get people to "get" it (coworkers, waiters, etc.)...we are all familiar with people saying it's ok to cheat (like it's a weight loss diet) or saying it's ok because it's whole grain, not wheat (misinformed)...and to understand cross contamination issues as well.

It's kinda like saying I'm a diabetic if sugar makes me jumpy...not true & devalues a serious disease. No one would tell a diabetic they are 'lucky' because they have to reduce their sugar intake !

It's just a pet peeve of mine.....

Link to comment
Share on other sites
MsCurious Enthusiast

I know one person who is gluten free because "it makes me feel better" she says. Who knows, it might. But... she isn't really gluten "free" -- she's what I call "gluten lite". She doesn't eat pasta or bread. Except when she's out somewhere like Olive Garden when she'll eat the rolls because "I can't resist." Otherwise she never checks labels for wheat flour or barley malt or any of the other things we have to keep our eyes open for. She orders the grilled seasoned chicken and doesn't worry about the seasoning, or what else has been cooked on the grill. She might pick her croutons out of the salad, or maybe not if it's "too much trouble."

Yes, it annoys me because I feel like other people might not take me as seriously if we're out together. I actually don't go out to eat with her much because of this.

Sounds to me like she's "low carb" and shouldn't call herself gluten free at all. :angry: You're right, people like that, who claim to be gluten free... and let others believe its okay if they have "some" gluten are doing celiacs/intolerants a huge injustice. It's not fun to have to juggle all the gluten obstacles out there...along with trying to make sure restaurants/bakeries etc truly ARE gluten free.. and aren't just saying that for "trendy" purposes of sales. I will look for restaurants who have actually been certified gluten-free... the ones that have sent their chefs to gluten-free school to be certified. People like your "friend" make this a more difficult battle than it should have to be... and you can tell her I said so, if you want. :P:blink:

Link to comment
Share on other sites
srall Contributor

I've had several people tell me they know other Celiac's or Gluten Intolerant people who are no where near as "neurotic" as I am. I was even told by a friend of the family that his wife is Celiac and she accepts our Church's regular Communion so it should be fine for me. I really want to find all these gluten lite people and explain to them how much trouble they cause people like me.

I've found two kinds of people at work. The ones who see how much weight I've lost and say, "I'm going to have to go gluten free". I tell them how hard it really is and how I will never be able to eat anything with gluten ever again. And then there are the ones who say, "I'd rather die." The last was my brother's response too and I am 99% certain he has Celiac. I tell them it's very hard but it's broadened my horizons to try things I've never tried before.

I had the EXACT same conversation with my brother, except I'm 110% sure he has celiac

Link to comment
Share on other sites
domesticactivist Collaborator

I'm not even celiac and I am equally annoyed by "gluten lite" people and products claiming to be gluten-free. I want to be able to make choices based on real information, not people's ideas of good enough. Having a kid we are 99.9% sure has celiac (see sig) makes me especially sensitized to the issue. I don't want people poisoning him because it was good enough for someone else!

You asked why someone would go gluten-free if they don't need to because of celiac. Here are my reasons:

- My son needs to be gluten-free, and I want him to feel supported

- After taking gluten out I became sensitized to it and got brain fog and other symptoms from it

- Upon doing research for how to help my son I realized I showed all sorts of symptoms correlated with poor gut health and reactions to grains such as:

  • unexplained neurological symptoms and borderline low thyroid numbers
  • migraine auras
  • life-long alternating constipation and diarrhea
  • suspected bipolar disorder

- In hopes of making those things better I tried GAPS, and while I still struggle with moods and have a newish stutter, I've realized the following benefits:

  • no more dandruff
  • no more migraines or auras
  • no more neuro weirdness
  • no more herpes outbreaks
  • fewer sugar/junk cravings
  • weight loss (I was actually fine with my size already but about 20 lbs over what I had been in my early 20s. My weight dropped back down to that level and seems to be staying there)
  • much less gas
  • improved digestion
  • chronic bad breath gone
  • better/normal menstrual cycle

- I've seen improvements in my non-celiac kid and my non-celiac partner as well

- As for effort and expense, we already spent a big part of our budget on high quality real food, and did a lot of cooking. It's less work to make one thing for the whole family than something with gluten and something without gluten!

So for me, it would just be ridiculous to go back! I could probably cheat without causing lasting damage that I'd ever find, but why would I want to feel like crap again?

I think I'm a more black and white thinker than most people, though. I also have a harder time sticking to things I am willing to make exceptions on. If I said a little bit is ok every now and then the next thing you know I'd be having oatmeal for breakfast and pasta for dinner.

A lot of people don't feel the gluten but believe it's better for them not to have it. For those people, a muffin in the same case probably is fine. As you all articulated, the problem doesn't lie with them being gluten-lite, the problem lies with calling it gluten-free.

Link to comment
Share on other sites
GFinDC Veteran

I think some people follow the gluten-free diet because of possible benefits related to autism. I don't think there is a proven link, but some people think it helps to be GFCFSF.

Link to comment
Share on other sites
Racer-J Newbie

This thread sums up the quite nicely why there needs to be an actual federal law on the books about what gluten free is and what gluten free isn't just like there should be a federal law that says you have to disclose if anything was manufactured/processed/packaged in the same facility/building/production line as a top eight allergen. Thins things should not be "optional". It's the only way to stop the spreading attitude of this being a "fad" to protect consumers who absolutely no choice in the matter. It's great that gluten free is getting the attention that it is but, a lot of it is starting to be the wrong type of attention. It's approaching the "gray area" where facts become myths and myths become facts and, people have to avoid even more things that they shouldn't have to.

It really irks me when I see "naturally gluten free" on an item. That is entirely to vague. Is it or isn't it? Stop trying to cash in on something and actually protect your customer base.

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
      120,500
    • 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...