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!

I'm Feeling Lonely Because Of Celiac


DS29790bb

Recommended Posts

DS29790bb Rookie

I am a 19 year old guy, currently a college student (home for break though). I have had celiac for five years, so I'm familiar with the disease and everything. I also have Type 1 diabetes, which I've had for six years. So I got two life-changing diseases within one year of each other.

Basically, I am sick and tired of having these diseases. I have no one to talk to and I feel lonely. All of my friends have told me that they think I have a great attitude about life while dealing with these.....I always act positive. But on the inside, I cannot stand it anymore. Every time I go out with friends, I have to bring my diabetic stuff and on top of that, I cannot just eat anywhere because of celiac. I have to make plans all the time and call restaurants or just order salads, which makes me and my friends feel awkward. When I'm out with friends and we're all hungry, they ask where I can eat at and it just makes me feel like crap when they have to adjust plans for me. It's torture being around girls when eating and then you have to tell them that you just can't eat pretty much everything.....then they think it's weird. There's so much more too, but I am really just getting tired of it.

I don't know what I need, but I feel terrible and alone. I went to a couple support group meetings but there really wasn't anyone my age there and I couldn't relate. One time in the dining hall at college, I met a girl who overheard me and a friend talking about gluten and she said she was celiac too, but I was so stupid and didn't become friends with her and I've never seen her again. I just want to meet someone who also has celiac or a gluten intolerance at the least so I don't feel so alone, but I can't find any (they don't just come up). I also was asymptomatic, so if I ever do eat gluten, I don't feel bad, which is usually motivation for others.

Sorry for the rant here, but my point is that I have two diseases that take a huge toll on my social life and interactions with people. I am really, really getting tired of this and I feel so lonely because there is no one to really talk to about it. I'm losing motivation (not for life.....but I'm losing motivation to stay gluten-free). How do I deal with this feeling/lack of motivation? I really need help. Thanks!

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



kaitlynrose Rookie

Hello, I'm a 17 year old girl with Celiac, and I know just what you mean. I have a cousin with Celiac and Type 1 Diabetes, and she also is often told she has a great attitude about life. Myself, having only Celiac cannot fully relate on a personal level, but I see what she really goes through. She is asymptomatic as well, so she often cheats and eats gluten.

I get very sick when I eat gluten, so I can't ignore having Celiac. I feel awkward with my friends, and even my family, when they have to change plans just so I can eat. They are all very accomodating and kind when it comes to finding food I can eat, but its just a hassle. I went to a party last night, and all the food they had was planned around me. It's very nice that they will do that for me, but I feel bad knowing they went so far out of their way just to feed me.

I live in a pretty rural area, and I feel like my cousin and I are the only ones with Celiac for miles and miles and miles. I want to find a support group, so I can find people that are going through the same things as I.

Don't lose motivation to stop eating gluten-free. As much of a pain it is to find things to eat, being healthy is certainly worth it!

Link to comment
Share on other sites
IrishHeart Veteran

Welcome!! and do not be sorry for venting. :) We get to do that on here. You have every right to squawk a little ---as you have had to deal with so much at such a young age.

I cannot imagine how hard it is for you having two AI diseases that require dietary compliance, especially when you do not have an overt reaction to gluten. If anyone would be tempted to cheat, it would be you. So, I applaud you for doing such a great job and taking excellent care of yourself.

Is there a celiac support group in your area? If so, maybe you should go!

I know someone who deals with both diabetes and celiac disease and I'll get him to chime in here.

You are not alone, kiddo--we are here for you.

IH

Link to comment
Share on other sites
Skylark Collaborator

Welcome to the board! Do you mind an answer from an adult? Because I sure feel the way you do sometimes.

I'm going to a party tonight. They will serve beer and I will have to bring my own cider if I want something to drink. I've eaten dinner ahead of time because I will not be able to snack at the party. Even if there is gluten-free food there will be cracker crumbs everywhere because nobody cares that their crumbs make me unable to eat. I will have a bag of dried fruit in nuts in my purse in case the party goes late and I get hungry. I HATE that, not being able to even pick up a stupid carrot stick for fear of CC. I will enjoy the company though, so that's why I'm going.

You have to enjoy the friendships you have, even if they're not celiac/diabetic and don't fully understand what you're coping with. It sounds like your friends are pretty cool if they go out of their way for you. And yeah, I know that salad dinner all too well. And that awkward feeling that I'm asking my friends to change plans...again. Thing is, my friends really don't mind. I bet yours don't either. We like hanging out and the food really isn't that important.

As far as dating, we have a built-in jerk detector. If a girl is more interested in what you eat than who you are, you know right away that she is shallow and probably not worth your time. I don't even bother with a second date if the guy gives me a hard time about my diet. I mean what will he give me a hard time about next??? There will be a time when a girl will come along who thinks you're awesome, and she won't care in the least that you eat a lot of salad and carry insulin with you.

On the bad days, you just gotta grit your teeth and hang in there. Come here and we'll commiserate because we all go through the same awkward social stuff.

Link to comment
Share on other sites
Lisa Mentor

Welcome to the board! Do you mind an answer from an adult? Because I sure feel the way you do sometimes.

I'm going to a party tonight. They will serve beer and I will have to bring my own cider if I want something to drink. I've eaten dinner ahead of time because I will not be able to snack at the party. Even if there is gluten-free food there will be cracker crumbs everywhere because nobody cares that their crumbs make me unable to eat. I will have a bag of dried fruit in nuts in my purse in case the party goes late and I get hungry. I HATE that, not being able to even pick up a stupid carrot stick for fear of CC. I will enjoy the company though, so that's why I'm going.

You have to enjoy the friendships you have, even if they're not celiac/diabetic and don't fully understand what you're coping with. It sounds like your friends are pretty cool if they go out of their way for you. And yeah, I know that salad dinner all too well. And that awkward feeling that I'm asking my friends to change plans...again. Thing is, my friends really don't mind. I bet yours don't either. We like hanging out and the food really isn't that important.

As far as dating, we have a built-in jerk detector. If a girl is more interested in what you eat than who you are, you know right away that she is shallow and probably not worth your time. I don't even bother with a second date if the guy gives me a hard time about my diet. I mean what will he give me a hard time about next??? There will be a time when a girl will come along who thinks you're awesome, and she won't care in the least that you eat a lot of salad and carry insulin with you.

On the bad days, you just gotta grit your teeth and hang in there. Come here and we'll commiserate because we all go through the same awkward social stuff.

^This made me smile! Probably because it's so true and so very well said, Skylark. Yes...what she said! ;)

Link to comment
Share on other sites
DS29790bb Rookie

Thanks for all your responses, they did help. Once again, sorry for ranting.....it's literally been in my head for five years and I needed to get it all out. I go to school in a large city so there's a lot of options for eating, so I guess I have it pretty good. It would be so nice to meet someone at my school with celiac though.....there are a few diabetics, but I'd much rather have diabetes than celiac. It's much easier. But thanks for all your responses, they did help.....especially the "built in jerk detector" when dating.

Link to comment
Share on other sites
psawyer Proficient

Hi, and welcome.

I have been dealing with T1 diabetes for 26 years, and have been gluten-free for 12, following a diagnosis of celiac disease.

Of the two, celiac disease has had more impact on my life--pre diagnosis. I was very sick, and for years, nobody could figure out why. As time went on, my symptoms continued to worsen. At the end, I was barely able to function.

These two autoimmune diseases have a statistical correlation. If you have either one, you likelihood of having the other is greater than if you don't. It has been suggested more than once that anyone with T1 should be screened for celiac disease, whether they have symptoms of not.

Both conditions involve dietary restrictions. Of the two, celiac disease is the more rigorous. As a diabetic, I can have occasional sweets, as long as I factor them into my total carbohydrate content, and balance them with insulin. A person with celiac disease must never have any gluten at all. You can not "cheat" occasionally.

Prepared gluten-free baked goods are often higher in carbohydrates (and fat) than their regular equivalents, so we have to eat less of them.

I don't let my life revolve around food. In social situations, it is the people that matter, not what they are (or are not) eating. Have a drink in your hand, and most people won't notice that you aren't eating something. If offered unsafe food, I politely, but firmly, say "no."

At first, dealing with each one was a big deal. Today, it just isn't.

I do realize that, at 19, you are at a different stage in your life than I am at 57. Peer pressure at school can be tough. But things will work out for you.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

Thanks for all your responses, they did help. Once again, sorry for ranting.....it's literally been in my head for five years and I needed to get it all out. I go to school in a large city so there's a lot of options for eating, so I guess I have it pretty good. It would be so nice to meet someone at my school with celiac though.....there are a few diabetics, but I'd much rather have diabetes than celiac. It's much easier. But thanks for all your responses, they did help.....especially the "built in jerk detector" when dating.

Glad you found that funny/helpful. B)

Please don't apologize for ranting. It's why the most popular section of the board by far is called "coping with celiac". As you well know, celiac is not something you can just forget about or ignore in our bread-centric society. This is where you can come to get the frustration out and we all completely understand!

Please come here and ask for help when you need it. That's much better than eating gluten. I really hope you can find a celiac friend or two but if not, you now have hundreds of celiac and even celiac/diabetic pen pals!

Answering your post helped me too. I got to the party last night and sure enough there was bread and cheese on the appetizer table and crumbs scattered everywhere. How do people make so many crumbs??? :lol: I could have eaten the olives and corn chips/salsa if the hostess had happened to put the cheese board somewhere else, but no such luck. Since I had replied to your post just before I left I was fully expecting it so it didn't bother me. I had a great time. :)

Link to comment
Share on other sites
x0xteenyx0x Rookie

I feel the same way, i am a 22 year old female. You just cant let things get you down. Its good to have friends that support you, i have some who think i am kidding about CC and just go "well you can just eat it now it won’t hurt you". I am a nurse so its good because i get to rant to all my co-workers, and in-turn they understand everything more. I always eat before i go out, and bring a snack bar with me everywhere i go. I get down sometimes to and think how nice it would be to just take a pill everyday and then eat everything i see :D how great would that be ! (We can dream can’t we ?? haha). I don’t know why girls would think it’s weird, you’re looking after your health to look and feel better, just like they do when they do their hair and make-up and eat salad to stay fit. Whenever I feel down I go to work (I work on a Peds floor) and see all the very sick and dying kids then get mad at myself for feeling like this, we get to do what we want see who we want live where we want. I have had the same issue, I cant seem to find anyone around my age who has celiac too, and I feel adults don’t really get it sometimes. We don’t plan our lives like they do, so when its 3am and ur hungry and all your friends want to go to a burger joint and just look at you, you just want to die. I always bake some really good like banana bread and cake then freeze it so when I am hungry I can just pull it out and have some normal tasting food. I have the same lonely feeling at time, even though I have a big family that supports me lots of friends and a boyfriend who does everything. So I don’t think there is really anything we can do, well I bought a bunch of pets and they make me feel better :P . Just remember you need to do it, people are fighting for their lives every day in the hospitals you can’t let food get you down. Maybe volunteer at a cancer floor or on a Peds floor, it might bring up your spirits to help other and see people worse off and still happy and enjoying life to the fullest. Just a thought. Hope this helped a little, I feel for ya

Link to comment
Share on other sites
x0xteenyx0x Rookie

sorry for all the bad spelling :s

Link to comment
Share on other sites
auzzi Newbie

If you can't find a support group on campus - start one ..

Put a sign up at Student Health, the Pastoral office of any campus ministers, the Notice Board near the Food Hall, the College pharmacy/drugstore .. Pro-active! ... You have done very well, at a young age - keep it up!

College life can be a pain in the butt sometimes, so swing it around to your advantage - take charge ... I think that it would be unlikely that you are the only student in this predicament.

Link to comment
Share on other sites
mommyto2kids Collaborator

We all feel this way a lot of the time I think. Young and old, it is so hard. I just went to a swim meet with my young kids and I felt the same as you, that I have to explain my diet and life issues. Sometimes I feel people must think I'm wierd. I think the good thing here is you have awsome and I mean awsome caring friends. We are teaching people to be caring and sensive to other peoples' needs as they learn to be caring and sensive to our needs. Take those teenagers from New York for example, they were clueless to being sensitive in any respect. The goal in society is to teach people to be sensitive to all peoples' needs. These are our needs and we can't help it. We are doing nothing wrong. We have to eat this way and yes it is a pain. But the big D is a bigger pain.

The Celiac Disease Foundation has some young people blogging right now. Look up their blog and see if you can meet and comunicate with them. I think 2 kids are teaching 2 newbie kids how to live and eat gluten free. Call the Celiac Disease Foundation or e-mail them to learn about it.Also there is a young girl who has a blog called Gluten Freed. I met her at CDF conference. She is awsome. See if you can contact her somehow. PM me if you need more ideas and I'll work on that for you. Hang in there. I think you are a strong person. Eating out isn't everything in life. There is so much more. When you get out of college it will be easier and willnot be such an issue.

Link to comment
Share on other sites
TightLoli Rookie

I know your pain exactly. I'm 18 and I find it hard to imagine a girl who will actually support my disease and deal with all of my set-backs. I get very depressed when I think about traveling, because a dream of mine is to travel to Japan and I don't know how much I'll enjoy it thanks to Celiac. We just have to hang in there man and be grateful that we don't have even worse things happening to us. I've felt very lonely ever since I've been taking my disease very seriously, and it's hard to be completely happy, but I honestly do think things will get better as time goes on and there will always be someone that has a comparable situation. Keep going.

Link to comment
Share on other sites
pianoland Rookie

Hi! I'm a 20 year old girl with celiac so I can relate. It sounds like your friends are willing to go to places where you can eat so I wouldn't worry about adjusting plans..people are flexible. Also don't worry so much about food. If you think you can only eat a salad, then eat before you go and ordering the salad won't seem like such a big deal. Or bring a protein drink with you (I love Orgain, it's lightly sweetened so I'm not sure if this is a good idea for your diet).

As for feeling alone at college.. I've met about 6 other people with celiac or gluten sensitivity at my school..and my school isn't that big and in a rural area. It really is great having a couple friends who know exactly what I'm going through. I've also met countless people who live with/are friends with/are related to someone with celiac. Any time you make a connection like that you should try to reach out to that person...email/facebook/whatever can get you in touch with them.

I also recommend talking to your school's dining service, they probably have a special diet chef on staff who might be able to help you connect up with other gluten free people. The chefs at my school actually prepared an individual meal for me every dinner because I was struggling to get a safe/healthy meal in the regular lines. It was like having a personal "gourmet" chef (compared to the mass produced mush they give everyone else). My friends would always tell me, "AH I'm so jealous." And I would just look at them like.. don't be. :D

Wow sorry this was a novel. PM me if you ever need to talk it out.

Link to comment
Share on other sites
emilio Newbie

Dude, from a guys perspective i feel your pain. What i just read right there was story of my life lol ive gone through exactly what you did. The girls, the having to bring it up, basically it taking over your life. I remember this one time i was at school and this girl had these brownies and she was literally putting it close to my mouth and im like uh, no thanks. I didnt want to tell her cause she'd think im crazy and i didnt want to go through the whole process of explaining.

Anyway, i turned it down and she kept saying "why? just eat it" and i would just put her hand down. A few weeks later it happened again. Coincidentally she had a bag of chips that had gluten in them and she offered. I said no im fine, and she was like "oh my god, you never eat!" and i had nothing to say but to smile it off. On the inside, i felt like crap. Sucks we cant enjoy something so small sometimes. When you meet a girl that has celiac, keep in touch. I already have a girlfriend but if i ever meet someone who has the disease i would probably be all over her lol id love to be friends with you if you want? remember you have a whole family here, im not on much but seeing this post makes me want to actually be much more involved (:

Link to comment
Share on other sites
Rodmanj Newbie

You are definitely not alone in this. I don't have type 1 diabetes, but I am pre type 2 diabetic (thanks to a hormonal condition I have) along with being gluten intolerant and I know how tough it is to not only have to be concerned about keeping your blood sugar stable, but also having to stay away from anything with gluten in it. Also, as someone who just graduated from college, I know how frustrating it is to be a young adult with these conditions, especially when it comes to going out with friends and them not understanding what it's like. As far as motivation goes, try to focus less on what you CAN'T eat and more on what you CAN eat. Even though you didn't have any symptoms before you stopped eating gluten, also remember that if you truly have Celiac, you can get really sick if you go back to eating gluten. Like I said at the beginning, you're not alone in this and I really do hope that things start to look up for you =]

Link to comment
Share on other sites
  • 4 weeks later...
Girlygoodness Newbie

I am hypoglycemic and I have celiac disease. No one ever asks me where I can eat when we're out. Because of my hypoglycemia I have to have a balanced meal so I generally end up having to eat wheat and I get sick. I have a horrible migraine because I had to eat wheat yesterday. You are very lucky your friends care.

Link to comment
Share on other sites
GlutenFreeAustinite Contributor

I'm 18 and Non-Celiac Gluten Intolerant, and I'm in the process of trying to work with my college about mandatory meal plans for freshmen. They can't properly accommodate so it's looking like I will most likely have an exemption, which is what I wanted, but it's a bit depressing too as it means I can't really eat with my friends in the dining hall. It sucks, but I'll do whatever it takes to stay healthy. Hang in there...the diabetic restrictions must add to the intensity.

Link to comment
Share on other sites
  • 1 month later...
glassroseheart Newbie

If you can't find a support group on campus - start one ..

Put a sign up at Student Health, the Pastoral office of any campus ministers, the Notice Board near the Food Hall, the College pharmacy/drugstore .. Pro-active! ... You have done very well, at a young age - keep it up!

College life can be a pain in the butt sometimes, so swing it around to your advantage - take charge ... I think that it would be unlikely that you are the only student in this predicament.

If your school has a website with a forum or even a classified section, post to ask if anyone would be interested in a support group. You could also use Facebook and publish your post to the whole school.

I've had food allergies my whole life and recently gave up the gluten that seems to be causing my fibromyalgia symptoms (they're slowly going away since I gave it up). I have found that the people who are worth your time, male or female, will not judge you for refusing certain types of food. I have never been turned down for a date or dumped because of it either. People may think it's weird if you don't explain why you don't eat certain things, but if you're willing to explain, those who are worth it won't judge you for avoiding gluten.

Link to comment
Share on other sites
glassroseheart Newbie

I am hypoglycemic and I have celiac disease. No one ever asks me where I can eat when we're out. Because of my hypoglycemia I have to have a balanced meal so I generally end up having to eat wheat and I get sick. I have a horrible migraine because I had to eat wheat yesterday. You are very lucky your friends care.

Sheesh. Those don't sound like very good friends. True friends would not want to make you sick. If you've explained your condition and vocalized your problems with their restaurant choices, they should try to accommodate your food needs. Sometimes they will fail or will want to try a place where you cannot eat, but many restaurants will understand if you bring your own bread or will try to accommodate you. It's always good to keep a snack on hand in case there's an unplanned meal.

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...