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!

Are There Any Other Celiacs That Are Overweight?


Jules

Recommended Posts

Guest gfinnebraska

I react to any mix that has guar gum in it. Guar gum has a trace amount of gluten ~ doesn't bother most celiac disease, but does me!! Try to find mixes, cookies, bread, etc. without guar gum and see if that fixes the problem for you. :rolleyes:

Link to comment
Share on other sites
  • 3 weeks later...

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



Celiac.com Sponsor (A8-M):



  • Replies 95
  • Created
  • Last Reply
bigapplekathleen Contributor

Hi Nadtorius,

I also follow a modified paleo diet. I, like you, find that I often react to gluten-free goodies. Certain manufacturers seem to provoke more of a response than others, so my thought is that it has something to do with their ingredient suppliers or the cleanliness of their factory (cross-contamination). I do best when I eat NO grains at all. I do okay with lentil pasta and rice pasta (specifically, NOTTA PASTA brand) but only very occasionally.

My doctor, who is a major celiac specialist, seemed to feel that there was something else WRONG with me if i am still reacting to gluten-free grains and wanted to run a lot more tests. My attitude is 'enough already!' I know what makes me feel unwell, so why not just avoid those things and live a happy, healthy life? Besides, Paleo Diet is the healthiest diet out there.

By the way, I have been making some really delicious paleo recipes lately. Have you done any gourmet Paleo meals?

kathleen

Link to comment
Share on other sites
Nadtorious Rookie

Kathleen-

My modified version does include rice (lundberg brown or jasmine) and a few potatoes every now and then. I drink lactose free milk too, but past that, I stay far away from anything processed. I finally linked it all together this summer-I race mountain bikes, and would cook meals from scratch during the weeks when I was at home and would feel great, but I brought pretzals and cookies and other gluten-free foods to races and would feel like crap all weekend! So much for that! (We have a camping stove that I take with now and make meals from scratch).

Anyways, cooking gourmet gluten-free meals for myself has been a bit of a pain! I'm intolerent to soy as well, but sometimes will sneak some Bragg's liquid aminos into a stir fry for more flavor. I've modified quite a few stew recipes (but they all end up tasting pretty similar). Two of my favorites have been garlic mashed potatoes (microwave a couple spuds, add LF milk, garlic, olive oil or unsalted butter, a bit of salt, and lots of pepper, simmer until it's thick), and short grain brown rice that I boil the night before, then add a little milk, a chopped up red apple, and some honey and cinnamon-good for breakfast. I eat a lot of red meat and fish, just because they're higher in nutrition and flavor. And I munch on fruit. Pretty basic, but this is the best I've felt in five years-3 years undiagnosed and 2 years eating expensive crap that made me feel even crappier!

Do you have any recipes???????

Good luck!

Nadia

Link to comment
Share on other sites
  • 3 months later...
mrsfiles Newbie

HELP PLEASE!! I was diagnosed with Celiac Disease by biopsy in April 2002~ a month to the day after my wedding ~God Bless my husband... I have since gone from a size 6 to a 16!!! My stomach feels better since going on the gluten-free diet but I am extremely uncomfortable with my weight gain. I admit in the beginning I ate a lot of rice and potatoes because those were safe, but soon learned how to adjust to gluten-free ways and eat very little of them, as well as bread (I'm a bit lazy when it comes to making it. I can't handle the store's gluten-free selection-I find it to be gross).

My GI Doctor has been no help as he just says I look healthy now. Easy for him to say, I'M the one with no waist now and weigh what I did when I was 8 months pregnant with my son 21 years ago!! I also exercise at a gym 3 days a week, for 1 1/2 hours a day, and have been for the past 2 years. I continue to GAIN not LOSE. I am so frustrated that I am ready to go back to eating gluten and deal with the consequences! I am so overtired all the time and have no energy. I had more before I was diagnosed. What can I do??? I need to lose weight. I had a physical recently for work and the Dr. told me according to my BMI, I am overweight and on the edge of obesity. My Dr. has checked my thyroid, glucose, hormones, etc. Can't find anything. Why is my watching what I eat (I've cut down on sugar and carbs) and exercising regualrly doing exactly the opposite of what it should be doing? Does anyone else have this problem?

Link to comment
Share on other sites
granddaughtergrace Newbie

I was diagnosed 6/03. Weight gain was explained to me the villi are growing back and saying "Oh yum, vitamins and minerals and sucking them all in." I have no answers but I do understand our bodys are in need of vitamins and minerals. I am going to make a New Years resolution to drink more water and ride my bike. We'll see what happens.

Good luck.

Sheila

Link to comment
Share on other sites
Agee Newbie

Whoa, Mrs Files you are posting all over the place about this!

Obviously, you are in a panic! I don't blame you. While I am new to eating gluten-free I am in no way new to the battle of the bulge, but I can tell you some things I've observed.

First, gluten-free baked goods have tons more calories and a lot less fiber than whole wheat bread or other baked goods. When I first started eacting gluten-free (about 2 months ago) I was going a little nuts on the gluten-free baked goods (the wholefoods gluten free bakery is right up the road...mmmm...lemon-cranberry scones) and every night I would try a new gluten-free treat. In about 2 weeks gained back the 5 lbs. I'd just lost from running 20 mi./week for the 5 weeks previous. This ALARMED me. I have a really tough time losing weight - and those 20 mi./week were tough to do - so I decided I needed to lay off the baked goods. After about two weeks (and not being on a diet) I'd pretty much dropped the scone weight.

I thought back to the diets that worked for me before. The only one that worked for me physically and psychologically has been the Carbohydrate Addicts' Diet. You eat 2 lowcarb meals and 1 moderate-carb meal a day. This is very simple to do eating gluten-free and does give me the feeling of deprivation that Atkins or WW has in the past (like most overweight 30-something women I am no stranger to dieting). Now, I've only been back on CAD for a week and a half but I really think I'll make it this time - 1)I have my head on straight and 2)I think that when I've cheated/binged in the past is probably had something to do with gluten consumption. Since starting the whole gluten-free thing I've felt so much better. It's been incredible.

And to follow up on the person last April (!) who said they got diarrhea on Atkins, in the book Protein Power it's explained by your body having to produce more of its meat-digesting enzymes if you've suddenly switched your focus from eating less carbs/more meat.

So - what I'm saying is I think you should really lay off the baked goods, eat more vegetables, and look into controlled carbohydrate eating. The low carb friends message boards are a great support system. It sounds to me, especially since you say you have no energy, that you may really need to think about your blood sugar and how you are responding to any simple carbs you're eating.

Agee

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

Sharon,

While my dughter has not yet been diasgnosed as having Celiac's we have been told 2x they think she has it, despite 2 neg. biopsies. We are waitng now for more results. You can see more info about what she's gone through on the Pre-Diagnosis thing or the one on Drs in Dallas area.

I am days away from passing my Personal Trainer's Certification. I was delayed because my daughter has been in and out of hospital and husband had surgery yesterday....just to really complicate my life! :rolleyes:

1 1/2 yrs ago my husband blood pressure was high, he weighed 256 and his cholesterol was 400+. He had to do something. We totally chnaged his diet...something I had triend to get him to do, but....you know how it is I am sure!

We had great success. He's 6' 2 1/2" and now keeps his weight around 190 lbs. He's still like to be less :D but look fine to me. Let me know if you'd like a few pointers!

Merrie'

Austin, TX

Mom of 15 yr old possible Celiac

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



anerissara Enthusiast

Oh, I am so glad I found this post! I am not overweight technically....I am 138 and 5'7....but I am a good 10 pounds over the weight I "fit" in, if that makes sense. My weight fluctuates like crazy, too...I can gain 5 pounds after eating *nothing* for a couple of days, or can lose 5 pounds after eating *everything*! It makes no sense. I have always had what I thought was IBS (since I was 16, anyway) but it's gotten so much worse in the last 3 years. I actually got better with my 3 pregnancies, but got worse after I quit nursing each time. I also get awful rashes which look like the blister-type Dh rashes.

My doctor told me I couldn't have celiac disease because I havent' ever "lost 15 pounds for no reason". This sounded wrong to me because I have just about every other symptom! And, I think I probably *was* malnourished because I was dizzy, short of breath, and just exhausted all the time. After 1 month on a gluten-free diet I feel so much better...it's like a dark cloud has been lifted and the world looks bright again! I was so tired and depressed and grouchy, that's what I've noticed the most is feeling "awake" again!

I have actually lost a little weight since going on the diet, but once I discovered some gluten-free snack foods and started eating the gluten-free bread I started gaining back a little :( I think that I will try and return to the carrot sticks and apples sort of snacks and maybe I'll do better.

It is so good to read that I'm not alone! And, now I have evidence to take to my crummy MD as proof that it *can* happen!

Do you guys think maybe part of the weight problem is that our bodies had been "starving" from malabsorbtion for so long that they just pack away every calorie that comes their way? Because I really think I eat *less* than most people, plus I do excersize and still I just can't seem to lose more than five pounds...which quickly returns the next time I even *think* about eating a regular meal!

Link to comment
Share on other sites
grannynanny Rookie

I agree about the weight challenges. I can go on the most extreme diet in the world, and not lose a pound! I play tennis 4 or 5 times a week, eat healthy and still remain 30 or so pounds overweight. I think I've actually dropped a pound or two since trying to go gluten-free (7 months ago). I figured I would have lost a lot more than that since my sweet tooth can no longer be fed with the cookies and cakes that used to rule my world. Sure wish somebody could explain to me how you can be malnourished and overweight at the same time!!!!!!!!!!!!

Link to comment
Share on other sites
  • 2 months later...
haysn Newbie

Hi, I am over weight also. Need to lose a lot of weight. I did lose 17 pounds when I first went off gluten this past year, ( this was water lose, I was very bloated) . but have started gaining some of that back. I always had the runs, and believe me it made me run. I couldn't understand why when I was always in the bathroom, I never lost weight. It has been hard for me now to lose weight. I need to start excerising more. Maybe that will help. I have been so sick for so long am looking forward to the day when I get my health back. I found out that I not only am allergic to gluten, but to food colorings and preservatives also. Do black olives have gluten? Can't eat them also. This makes eating a challenge, but I am getting there. Trying to find as much stuff on celiac diease as I can. Doctor not real helpful. ;)

Nancy

Link to comment
Share on other sites
Guest nini

I'm an overweight celiac too. I wondered the same thing. How can I be overweight when I get sick from everything I eat and had constant chronic diarrhea? After going gluten-free I have lost quite a bit of weight, and went from a 22-24 to a size 16... I have hit a plateau and am sure it has something to do with feeding my sweet tooth with Gluten Free Pantry's goodies and Kinnikinick donuts and Pamela's brownies... Oh well! :rolleyes:

Link to comment
Share on other sites
ianm Apprentice

I used to be about 80lbs overweight before gluten-free. I have to really watch the carbs and the portions of what I eat. I also have to exercise regularly. I gain weight really easy so I stay away from the gluten-free breads and pastas because they have too much carbs and less fiber. Plus they cost too much and don't taste that great. No sugary foods either.

Link to comment
Share on other sites
taligator Newbie

Hi guys,

I'm not a diagnosed Celiac but live an 85% gluten-free life because I feel better when I don't eat wheat or gluten. The 15% is the things I just turn a blind eye to because I eat out a bit and never know what is in the food I'm eating.

I don't know if I'm a true celiac or just gluten sensitive, I'm guessing on the latter but you never know. My Mom and I both eat gluten-free and feel better for it.

BUT, I am going to have all the tests done as soon as I can. I'm about 130 pounds overweight and it's quite the challenge. I lost about 10 pounds when I cut out the gluten intially but gained it back and now I'm struggling to figure out how to eat the best.

But, Kat's post about the paleo diet made me think about my past dieting history and how good I felt doing strict low-carb so I'm going to dig out my copy of NeanderThin when I get home and see what I need to modify.

Thanks for this post and for your support, it's very needed especially when we don't have the typical celiac symptoms.

Link to comment
Share on other sites
  • 2 weeks later...
PreOptMegs Explorer

Hi Everyone! I would not consider myself overweight, but since having this celiac thing (just diagnosed approx 3 weeks ago), I reach a certain weight and no matter how much I diet and exercise, I cannot seem to break that weight. After days of trying, it never fails that I get contaminated with gluten, which skyrockets my weight up again. I am so sick of this. I mean, I eat incredibly healthy, very low calorie meals and I stop eating each day at 4 pm to try to lose weight, but so far nothing has helped. My body feels as if it isn't breaking the foods down right. I don't know if anyone understands what I am feeling, but it is as if my metabolism is in slow motion. I was told i have a hypothyroid problem and I am taking medication for that, but I still don't feel like my metabolism is up to snuff. Anyone else with this problem?

Link to comment
Share on other sites
Mya Apprentice

My suggestion would be this: you should eat smaller meals every three hours to keep your metabolism going. It might not be the best idea to stop eating at 4pm, if you are hungry again around 7, have a little snack, some cottage cheese, a yogurt, handful of nuts, just something small. I'm a health ed major and have done a lot of research on weight gain, and weight loss. If you exercise 30-60 min a day that's awesome. Weight training 3 times a week for 20-40 minutes will benefit you greatly. A pound of muscle burns 50 calories/day, a pound of fat burns 2 calories/day. So, by weight training, you will transform the fat into muscle, and the scale may tell you you're gaining weight...well, you are, muscle weighs more than fat, but do your clothes fit better, do you feel better? Don't go by the scale... Working closely with a trainer and a nutritionist may help you also. I hope I have helped you a little bit.

Link to comment
Share on other sites
PreOptMegs Explorer

After having a gluten attack and blowing up like Shamu's cousin, I will lose that weight very quickly, but then I get stuck at a weight and no matter how much I diet and exercise, my weight won't budge!!! I go to the specialist in a few days, so hopefully he can help me overcome this awful thought of being "fat" and still not getting to eat what I want!!

Link to comment
Share on other sites
ianm Apprentice

I started weight training about 4 weeks ago and I have noticed a HUGE difference. I have gained weight but lost fat. I still do aerobic exercises like walking and bike riding a lot but that alone wasn't getting my body where I wanted it. You need to do the anaerobic exercises like weight training also. My body is starting to reshape in the way I want it to look. Still think those six-pack abs are going to take a long time.

Link to comment
Share on other sites
PreOptMegs Explorer

I am a college basketball player and we do lift weights 3x a week, and I know muscle weighs more than fat, but I am still not satisfied with the way my body looks. I made it through all of the wonderful holidays with the body I worked so hard for, and then this celiac thing came on, and I just am not happy. I will try to keep my metabolism going throughout the day, that is a great point. Thank you for your help.

Link to comment
Share on other sites
Guest Eloisa

I truly understand where you all are coming from. I had been on an exercise program closely monitored by a personal trainer and a nutritionist for years both being close friends. My routine consisted of lifting weights for 1 hour 3 times a week sometimes 4 and then doing cardio about 30-45 minutes 3 days a week with one day off. I kept doing this throughout my diagnosis of celiac disease but noticed that when I started doing the gluten-free diet I either wouldn't loose weight or I'd gain a little. This frustrated me cause I started thinking I was doing the wrong diet, that maybe the dr was wrong and I needed to my wheat bread and my oatmeal in the morning and do what I had been doing for years. I was what you call a clean eater (not white and no sugar) and no eating out. But after I was diagnosed I so depressed that I started eating things that I would never eat before. You know the chocolate bars that are gluten-free whatever I could find. Esp. that crappy bread and cookies they sell that are gluten free and you wind up eating the whole damn bag out of the frustration of your life change. We are all set in our ways and when our lives and structure get wrecked up and we have to make major changes in our lives we tend to get depressed about it and ruin what we've worked so for. Anyway, I've stuck to the gluten-free diet and had kept up with the workout routine your know changing it when your supposed to. I had notice that I would bloat up and feel bad and felt like I was spinning my wheels and wondered why I was doing all this exercise. One thing I did notice was then I would bloat up when I'd eat out or eat some kind of corn. So when I'm being really good and not eating corn tortillas or chips and salsa the scale starts coming down. If only I could stick to this and not let any other stresses in my life drive me not want to cook and eat out.

Link to comment
Share on other sites
  • 2 weeks later...
Guest BellyTimber

:lol:

Thank you folks for an awesome thread (I hope it's all right for a gent to join in)

At age 50 I have been about 28 lb o/w for some years including before I went gluten-free.

(Until age 25, plus I was seriously emaciated)

Shal wait till I'm more settled then try and adapt the Slimming World programme - becme a postal member to see what it was.

Your posts are very inspiring.

Link to comment
Share on other sites
  • 4 weeks later...
julie5914 Contributor

I do think perhaps our bodies are just being too darn efficient. I trained for a half marathon last fall before I was diagnosed and gained nearly ten pounds on a diet of less than 1800 calories, small meals throughout the day. People kept saying it was muscle and still do (since I haven't lost any since I stopped running due to energy), but if muscle makes me look like this, I don't want it. I can't fit in my pants! I went from size 6 pants before my wedding in August to size 10 pants by December.

It's so frustrating I want to cry. I have only been gluten-free for a week, and I keep getting on the scale, thinking maybe this is the key that will finally take this weird weight off. I got on this morning and had gained a pound. I am really not sure how to break my body out of being so efficient. If it keeps acting the way and my metabolism slows as I age, I won't be able to eat anything! I excercise 3-5 times a week, at least 3 of those times weight lifting is involved.

I will let you know if gluten-free helps in the next few months. I really don't know what else to do besides eat well and exercise. It doesn't make sense. I feel like a slob.

Link to comment
Share on other sites
cmom Contributor

Believe me, I feel your frustration. I gained 10 lbs in 10 days over Christmas Break last year and have still not been able to lose it. I walk 2 miles a day/5 times a week and also do aerobics or toning exercises. I am totally gluten free to my knowledge (not aware of any cross contamination, etc). My stomach normally looks like I'm 6 months pregnant. If I am having this much trouble being pre-menopausal, I fear what will happen to me when the big M finally does hit. I will look like a small blimp! I am so discouraged; my clothes don't fit and I am miserable much of the time from feeling uncomfortable. Am thinking of having a thyroid function test. I know everyone with a weight problem says their thyroid must not be working or it's a gland problem but at least I could rule that out as a culprit. Hang in there!

Link to comment
Share on other sites
hnc Newbie

These comments are very helpfu - thanks to everyone. Some more thoughts: When diagnosed, I immediately eliminated gluten and lost 75 pounds in about six months (like usual, more came off at first). Because I have multiple illnesses, I also have chemotherapy at about this time. I knew I'd gain a lot from that, and I did, but for some unknown reason it has not gone away. Can be very discouraging. Also have irritable bowel syndrome, with strongest emphasis on the constipation. It is much worse due to necessary pain medication. Because I don't get much in the way of whole grains due to Celiac, it is harder to deal with than usual. Because medication for rheumatoid arthritis has almost destroyed my kidneys, I have to be extremely cautious about laxatives. I eat lots and lots of fresh veggies and fruit. Any other ideas?

Link to comment
Share on other sites
hnc Newbie

I think it makes a great deal of sense that Celiacs are overweight, even though we are often greeted with skepticism by doctors. If the body does not use its food as fuel because of gluten consumption, why wouldn't it get stored as fat? Our bodies can only get rid of so much of it in other ways. Any other theories about this?

Link to comment
Share on other sites
ianm Apprentice

Try eating buckwheat and flaxseed meal. They taste good and have lots of protien and fiber. Those two keep things moving along. I lost most of my weight pretty quickly but I still have some love handles that aren't going to go without a fight. That last 5-10 pounds still has a death grip on my waist.

I once read that when the body is in distress it will store fat and water to help combat the problem.

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
      120,503
    • Most Online (within 30 mins)
      7,748

    PBunny39
    Newest Member
    PBunny39
    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

    • powerofpositivethinking
      I haven't been on this forum for a long time, but it was absolutely wonderful during the diagnostic process!  My path for celiac disease diagnosis was the following: -Had normal IgA level, and my only serology positive test was the DGP IgG -Deficiencies in both Vitamins D and K that did not increase at first despite massive supplementation -Diagnosis of fat malabsorption both total and neutral -Diagnosis of severe exocrine pancreatic insufficiency (EPI) -Testing was completed to rule out causes of EPI, and the only one not ruled out was celiac. -Both traditional endoscopy and pill capsule endoscopy yielded negative results for biopsy confirmation, but my GI doctor said that both procedures simply could have missed the damaged spots. -EPI and fat malabsorption resolved after taking Creon for 6 months since my EPI was caused by celiac -23 and Me said I don't have either of the two prominent genes for celiac disease   Remember that you might not have 'textbook' symptoms, but you still may have celiac disease.   Also, I am SO incredibly grateful for this site for all the learning it has allowed me to do. I have a senior dog, and these last few weeks with her were very scary! After two hospital stays, she finally received an IBD diagnosis after having gastroenteritis and pancreatitis. I know that celiac disease is not IBD, however, through reading this site, I learned more about it. I was relieved when I found out she had IBD and not cancer this past Wednesday. I know IBD can be managed thanks to what I've learned here!  So celiac.com, not only did you help me, but you helped my pup too! Thank you ❤️  
    • 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.
×
×
  • Create New...