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!

DH Photo Bank


dani nero

Recommended Posts

sisterlynr Explorer

I only eat at home as well after getting cross-contaminated twice (I think so, anyway); it's difficult socially as most folks just don't really understand. They think, just a little bread, just one cookie, or whatever. I find it's easier to just be a bit isolated at the moment until I feel stronger.

.... m

When we go out to have dinner, I ask for their allergy menu. Red Lobster cleaned a grill for me, wore gloves and prepared salmon along with a salad. I had to wait a little longer than usual but it was worth it to know I wouldn't be cc'd. I don't even try to eat at the fast food place anymore. :rolleyes:

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



  • Replies 189
  • Created
  • Last Reply

Top Posters In This Topic

  • squirmingitch

    24

  • sisterlynr

    10

  • dani nero

    8

  • europyia

    8

Top Posters In This Topic

  • squirmingitch

    squirmingitch 24 posts

  • sisterlynr

    sisterlynr 10 posts

  • dani nero

    dani nero 8 posts

  • europyia

    europyia 8 posts

Posted Images

squirmingitch Veteran

can you please clarify?

we posted photos and are comparing notes; why is there an issue with that?

Yes, moneek. The dh photo bank is pretty much so that people coming on the site can go directly to it to see photos of dh in it's many, & varied presentations. It was not intended for a discussion thread other than a short comment here or there. New people wanting to look at or compare photos would have to wade through a whole bunch of discussion in order to get to the next photos posted. Also, discussions such as iodine or thyroid meds affecting dh or anything else would be well served in threads with the subject in the subject line to make them easier for people to access when they are wanting to know about that aspect. Also then, it makes things easier to search. If one put iodine or thyroid meds into the search function it would not come up with the dh photo bank as a major hit.

Hey, I'm not trying to be a downer here. I just am trying to keep people from getting discouraged when they are looking for photos or info. on iodine or on thyroid meds or this or that. I remember all too well when I was a newbie & had gluten brain fog ---- I wanted --- NO , I NEEDED the quickest way possible to access the info. I was looking for & wading through a long discussion to get to another batch of photos would throw me off. I think we all want to help as many people as possible to not suffer with this insane itch & that is what I'm aiming at with this point.

Bottom line ---- it doesn't matter what I say. Sooner or later one of the moderators is going to come along & see all the discussion on this thread, split the discussion part out, re-title it appropriately like "managing dh & thyroid meds; a balancing act" & move the discussion part with the new title.

Example: Darkfire Ann posted photos on here when she first come on & then discussion ensued. One of the moderators came along & saw it & split it out & moved it. Too bad the photos got moved with it. I will ask Darkfire Ann to repost her photos to this thread so that ppl looking for photos can find them. See:

Link to comment
Share on other sites
moneek Newbie

Yes, moneek. The dh photo bank is pretty much so that people coming on the site can go directly to it to see photos of dh in it's many, & varied presentations. It was not intended for a discussion thread other than a short comment here or there. New people wanting to look at or compare photos would have to wade through a whole bunch of discussion in order to get to the next photos posted. Also, discussions such as iodine or thyroid meds affecting dh or anything else would be well served in threads with the subject in the subject line to make them easier for people to access when they are wanting to know about that aspect. Also then, it makes things easier to search. If one put iodine or thyroid meds into the search function it would not come up with the dh photo bank as a major hit.

Hey, I'm not trying to be a downer here. I just am trying to keep people from getting discouraged when they are looking for photos or info. on iodine or on thyroid meds or this or that. I remember all too well when I was a newbie & had gluten brain fog ---- I wanted --- NO , I NEEDED the quickest way possible to access the info. I was looking for & wading through a long discussion to get to another batch of photos would throw me off. I think we all want to help as many people as possible to not suffer with this insane itch & that is what I'm aiming at with this point.

Bottom line ---- it doesn't matter what I say. Sooner or later one of the moderators is going to come along & see all the discussion on this thread, split the discussion part out, re-title it appropriately like "managing dh & thyroid meds; a balancing act" & move the discussion part with the new title.

Example: Darkfire Ann posted photos on here when she first come on & then discussion ensued. One of the moderators came along & saw it & split it out & moved it. Too bad the photos got moved with it. I will ask Darkfire Ann to repost her photos to this thread so that ppl looking for photos can find them. See:

http://www.celiac.co...-skin-shedding/

thanks for squashing the conversation and alienating other memebers. (not)

I am leaving this forum, for just this reason.

I have ideas to contribute, things to discuss, photos to share, but with the obnoxious attitude that prevails here, I am not able to bear more stress.

Link to comment
Share on other sites
squirmingitch Veteran

I'm really sorry you feel that way. The conversation didn't get squashed; it got moved ---- to here:

and it takes a moderator to move it. I am not a moderator.

You DO have ideas to contribute, things to discuss, photos to share & I hope you will reconsider your decision. No one said you could not do all those things. They just need to have some kind of order & not be willy nilly or no one will ever benefit from your ideas, discussions & photos.

I KNOW you are under a lot of stress; not only from dh & celiac but also from losing your home to Sandy. I REALLY DO KNOW THAT KIND OF STRESS --- been there, done that. I also suspect you are going through gluten withdrawals which can make us further stressed, angry, disoriented, confused & tend to take things personally & become irrational. Again, been there, done that. I feel so much for you hon. Honestly & from the bottom of my heart I mean that. ALL that you have been through has given you major overload.

I hope you will re-consider & stay with us. As I said before; I was enjoying the discussion & I meant that.

At any rate I send you monster hugs ((((Moneek)))) & though you may not believe it those hugs are sincere. I think you need some hugs & maybe a shoulder to cry on. We are here for you whenever.

Link to comment
Share on other sites
SPJandE Newbie

My son is not "officially" diagnosed, as we've decided to hold off on testing until he's older. My son had silent reflux and cried constantly (and I would bet part of that was itching and not being able to scratch). He had weight loss/failure to gain issues for months. He finally made it back onto the chart at 9 months and stayed in the 3rd percentile until 15 months, where he made it all the way to the 7th percentile. He's still smallish, but he's growing consistently finally.

He had a rash almost from birth. Steroid cream made it go away, but it would come back worse. We figured out very early on (2 weeks) that he had problems with dairy...couldn't even do hypo-allergenic formula (Nutramigen, which is still milk based, though very broken down). The rash got a bit better when we switched to Neocate (dairy free) and then he started getting oatmeal and it was worse again. Once we made him 100% dairy and gluten free, the rash went away. The only time it comes back now is if he gets glutened or "dairied". Even then, it hasn't been nearly as bad as it was for months. It still itches him really bad though and he digs at it constantly (it's the worst on his legs). He does gets some random spots here and there, which I believe is because we've brought small amounts of gluten into the house again lately (bread, for brothers' sandwiches, and crackers for their snacks). So the house is going gluten free again and if that doesn't do the trick, we're going to change salt and try to start limiting iodine. Anyway, if you made it through all that (I suck at narrowing things down and wanted to make sure I gave all the necessary info), here are some pictures from when he was almost 5 months old and it was pretty much at it's worst...

Embry136-1.webp

EmbryRash003.webp

EmbryRash004.webp

EmbryRash012.webp

Getting Better (fading)

EmbryRash016.webp

Link to comment
Share on other sites
anonymous-123 Rookie

holy crap.....i have a rash on the inner part of my arm by my elbow that are small red dots that just appeared a couple days ago and got a little worse today. i have not been diagnosed with celiacs or been tested yet, but b/c of bloating and hive breakouts, I decided to go on a soup/salad diet, which contains salt (Iodide). My bloating went away. I've been doing the soup/salad thing and eating organic blue corn chips and salted rice cakes and fruits for about a week and a half. could this be the cause of my rash??!!

Link to comment
Share on other sites
sisterlynr Explorer

Deleted pictures and my response per the request of SPJ&E

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



SPJandE Newbie

The tough part is finding a doctor anywhere near our area. We live in a small town and it's not easy. We drive 1.5 hrs. (1 way) to see a good pediatrician and the specialists are a good bit further (one is a 3 hr. drive one way). We would be more than willing to put him on gluten for a time, in order to do a biopsy if we could actually find a doctor within a reasonable distance that is worth anything. We took him to his ped numerous times for this rash...she was stumped. She referred him to a local dermatologist, who basically said he had no idea...to try this steroid cream on it (that his office didn't even call in like they were supposed to). He was just...dumb, to put it nicely and it was a total waste of time (and that wasn't the only issue we had with that office).

So yes, we would love to have an official diagnosis, but that's easier said than done. Our older son's GI recommended bloodwork, but I know how unreliable the bloodwork is, especially for young kids. We are not willing to put him through blood testing at this point when keeping him gluten and dairy free keeps the rash away. A biopsy we would be totally fine with. I think the derm we seen just turned us off of trying to find another, so we have kept him gluten free and he's been fine. He started gaining weight finally and we just left it alone...stuck with it and haven't worried about getting anything "official".

If you don't mind, would you please remove my pictures from what you quoted? Please know that I don't request that to be "snarky" or "rude" in any way. I just may want to remove them from online at some point and won't be able to take them out of someone else's post. Thanks!

Link to comment
Share on other sites
brandiecane Newbie
On 6/23/2012 at 10:44 AM, squirmingitch said:

These first 4 are from Sept. 2011 when I was on the verge of discovering this was dh.

 This 1 shows the clear amber fluid. The blisters were coming up so fast & bursting all by themselves.

The following ones are after 6 months gluten free & several months low salicylate & not a lot of iodine but I had been doing so well that I couldn't resist eating 4 tsp. of strawberry banana yogurt & during the night I woke itchin like mad & my neck all broken out in dh. Then other places began to break out again.

Other leg. Scars will fade away after about 5 months.

I have been adamant NOT to scratch! None of the lesions or scars are the result of scratching them. It's bad enough w/o making bad scars from scratching them. I will scratch around them but never on them. I will rub on them and press on them.

The only place I have not had them yet was on the soles of my feet. I get them horribly in my scalp & they tend to be very large there --- the size of a quarter. They look different than these photos but there is no way to seperate the hair well enough to get a good clear photo. In the scalp they generally take 6 weeks to heal. All others run a course of 2 to 4/5 weeks depending on if I was gluten free or got cc'd (only once) & if I got too much iodine or salicylates.

Oh my goodnees, I am so thankful you posted this. That is exactly how mine looked before I went gluten-free. I struggled with DH for so long before I finally went gluten-free and saw results. I was misdiagnosed several times by multiple doctors and I wish I would have seen this forum months ago! Do you notice any flare ups from Chlorine or Tylenol? I got in a chlorine pool this summer and had a terrible flare up. I even had to get a chlorine filter on my shower head. Lately, I have been taking Tylenol PM and am experiencing a flare up. That's the only thing I can really think of that would cause a flare up. Have you experienced exacerbations from Tylenol?

Link to comment
Share on other sites
LauraB0927 Apprentice
On 7/1/2012 at 11:46 PM, dani nero said:

This is a more recent picture of how the rash developed since the previous pictures. I now get reddish patches with dry flaky skin that appear before, with, and after the blisters. They don't show very well in the pic however due to being lubricated:

Dani! This is exactly how my fingers looked!!! I dont get it anywhere else on my body but I do get eczema on the back of my neck (who knows, it could be DH), but I get those itchy, red bumps on my fingers, but they dont really look like they are filled with anything. They're definitely raised, but I dont see any puss or fluid in them. It hurts when I wash dishes (my mom thinks I'm just trying to get out of it lol) Could it be DH?

Since I'm a nursing student and need to work with people in the hospital, I went to the doctor because I didnt want the patients to see my hands and get all freaked out - plus, I didnt want any of their germs getting into open cracks in my skin!! He didnt even know what DH was - looked up some pics on google and said it was eczema on my fingers, gave me some cream, and sent me on my way. The cream mildly helped but it came back so I just gave it to someone who actually had eczema.

I havent had any gluten accidents in a while, and the bumps went away. After seeing your pic I think I may have DH, but dont want to jump to conclusions because its nowhere else on my body...your thoughts?? :)

Link to comment
Share on other sites
Ninja Contributor

Hi all,

I'm adding more pictures now that my rash has developed some consistency. I get it on my upper back/shoulders, buttocks (not amused :ph34r: ), stomach, jaw line and hairline. Some more recent-ish photos - the rash hasn't changed much - varies in severity (these pics are medium severity). Still not dx'd but Celiac is suspected (I think?).

http://cl.ly/image/190q3e3m1A09

http://cl.ly/image/2j1M2s2E2l2b

http://cl.ly/image/2y2A0N160h29

http://cl.ly/image/1i1o1B2D1J0H

http://cl.ly/image/3j1K3i2C412g - I always always always get this "lesion" in the same spot every time I get glutened or iodined - so strange.

Still obscenely itchy, stings, doesn't like hot weather or water, etc.

Hope this helps someone! :-)

Laura

Link to comment
Share on other sites
anonymous-123 Rookie

does dh itch? i have a rash on the inner part of my arm by elbow but it doesn't itch. i put eucerin healing ointment on it and it seems to lighten it up a bit, but does not go away. will be seeing derm in a couple weeks.

Link to comment
Share on other sites
squirmingitch Veteran

DH is called "the suicidal itch" & that's for a reason. It itches insanely, burns, stings, & the lesions can be painful & sore.

Link to comment
Share on other sites
anonymous-123 Rookie

DH is called "the suicidal itch" & that's for a reason. It itches insanely, burns, stings, & the lesions can be painful & sore.

ok great. thanks for the info. maybe it's just dry skin. it doesn't itch at all, but it is there. it is like little red dots.

Link to comment
Share on other sites
squirmingitch Veteran

Since dh can flare at any time until all the antibodies are out of our skin, I thought it would be good to show such as well as the progression of it as it ravages the skin. I have been absolutely strict gluten-free since Dec. of 2011. We have a gluten-free household & eat 99% whole foods. Have not eaten out at all. My dh had improved greatly upon going gluten-free & even though I still had some dh; it was nothing like what began in Sept. of 2012. I have been mostly low iodine since going gluten-free since I have found iodine to make my dh flare.

In the beginning of Sept. 2012, I began to have a spontaneous flare of dh. When it began I had no idea it would continue flaring to this day & so severely.

These first 2 photos were taken on Oct. 12, 2012.

8396010613_0c60092033_z.webp

8397101136_3c897d5c14_z.webp

These next photos were taken on 1/13/13.

8397122688_fd540a236c_z.webp

8396040891_f157ab80c7_z.webp

8397124830_53a176428e_z.webp

8396042507_5c60904ecd_z.webp

8396043099_5c3684216d_z.webp

8396043589_3b2901e657_z.webp

8396044249_cc6276d95c_z.webp

Above shows what I call the flesh eating lesions. It starts as a tiny little water blister & I don't scratch --- it just eats away at the flesh & gets bigger & bigger & bigger. You will see more photos of this same area in the next date series. You will see what it turns into from this point.

8396045721_bd281402f6.webp

Apparently I can only post a certain # of photos on one post so I will have to make another post to put the rest of the photos on.

Link to comment
Share on other sites
squirmingitch Veteran

Photos taken on 1/19/13.

8397268918_25a514e824_z.webp

Above is the flesh eating lesions you saw earlier.

8397268656_f95f1f68df.webp

Below is the underside of my breast.

8397268718_b204fa28b6.webp

Lesions on my front:

8397266446_ab21f97c3b.webp

My left side up to armpit area:

8396184979_1c4d183076_z.webp

The flesh eaters:

8397257702_f115b8f4b5.webp

8396184957_ea5c25aef1.webp

My scalp has been ravaged more than anything you see here.

Clothing is sheer torture to wear.

Link to comment
Share on other sites
GFreeMO Proficient

Ditto to Squirming's pics. Mine looks EXACTLY like yours.

Link to comment
Share on other sites
mushroom Proficient

Ditto to Squirming's pics. Mine looks EXACTLY like yours.

I am sorry you both have to suffer like that; it looks incredibly painful and uncomfortable. :(

Link to comment
Share on other sites
squirmingitch Veteran

Thanks Shroomie. It does suck.

Link to comment
Share on other sites
GFreeMO Proficient

Thanks Mushroom. :)

Link to comment
Share on other sites
Celiac Mindwarp Community Regular

Thanks squirmingitch.

I am sure a friend has dh from your pictures. I will show him in a couple of weeks when I next see him. He had negative blood test, but had been gluten-free beforehand. Great thread, thanks.

Link to comment
Share on other sites
sisterlynr Explorer

Thanks Shroomie. It does suck.

Oh my goodness! I had the 'flesh eating' lesions on my lower belly. I really think it was several lesions side by side that just grew into each other. They have healed and now are the dark purple color.

I know you have been so strict on being gluten-free, I want to cry for you! Do you think your doctor will order light therapy for you?

Wish you could take Dapsone or maybe the topical? I think I'll have my niece take photos of my healed skin after being on Dapsone since 10/20/12. So sorry for you. . . . :(

Link to comment
Share on other sites
squirmingitch Veteran

Oh my goodness! I had the 'flesh eating' lesions on my lower belly. I really think it was several lesions side by side that just grew into each other. They have healed and now are the dark purple color.

I know you have been so strict on being gluten-free, I want to cry for you! Do you think your doctor will order light therapy for you?

Wish you could take Dapsone or maybe the topical? I think I'll have my niece take photos of my healed skin after being on Dapsone since 10/20/12. So sorry for you. . . . :(

Thanks dear. I doubt a GI has any clue about light therapy. And yes, sometimes you get the flesh eaters where you get 2 or 3 next to each other & then they all grow together to make one huge lesion.

Maybe the topical Dapsone..... I don't know. Just have to talk to him & see.

My other worry is that if I go the Tetracycline route that I am deathly allergic to Penicillin & what if I develop an intolerance to tetracycline? If I get really sick & need it then I won't have any options left to me.

There are time that .38 is looking better & better.

Link to comment
Share on other sites
mushroom Proficient

There are time that .38 is looking better & better.

Hope we're talking about a bigger bra here :D

Link to comment
Share on other sites
sisterlynr Explorer

There are time that .38 is looking better & better.

Oh Squirmingitch ... put those thoughts way out of your mind! The topical Dapsone is ACZONE® and you may want to research to see if your doctor will prescribe it for you.

When I asked for Dapsone, I mentioned the topical to my PCP and she didn't seem to recognize the name. Since she agreed to order Dapsone, I didn't press her further about the topical med.

Your GI may not be familiar with light therapy but I know the Derms do. Hang in there! Prayers and ((hugs)) to you.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    2. - Julie Riordan replied to Julie Riordan's topic in Traveling with Celiac Disease
      3

      Any ideas for travelling

    3. - Nedast replied to Larzipan's topic in Related Issues & Disorders
      16

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to SuzanneL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test

    5. - SuzanneL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Weak Positive Test



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,498
    • Most Online (within 30 mins)
      7,748

    Kim.cervone513
    Newest Member
    Kim.cervone513
    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

    • 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.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
×
×
  • Create New...