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What The Heck Is Going On?!


Lfrost

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Lfrost Explorer

Ok, so we are 9 days gluten-free (plus 3 more days prior with one day in between where we gave him gluten). We had been having great results. My son's constipation is pretty much gone, and he says it doesn't hurt to go anymore. He has quit wetting himself. He used to be a very grumpy and defiant introvert, lately he has been very sociable and happy, even singing. He talks all the time now, I didn't know he had such a big vocabulary. He definately seems more 'with it' (we thought he seemed behind academically compared to his peers, but doesn't seem that way anymore).

But now...last night we went to the store and it was like a switch flipped in him, he was literally bouncing off the walls! It was like a manic hyper. I chalked it up to him being tired because when we got in the car to go home, he crashed out hard and it was a little past bedtime.

Then today! He has been a wild child all day! Granted, while he is hyper he is very happy, but it has been extreme! My son's blood test came back negative for celiac, but his allergy test came back with low allergies to wheat, egg, milk, soybean, peanuts, and fish/cod. I have been diligent in not feeding him gluten and I have tried with the others, but will admit that I have not been as diligent. Also, when he woke up this morning, his puckered dry lips were back (they went away when we went gluten-free). He was also stuffy yet sniffly all day (he has gotten a sore under his nose from the sniffles today alone). He was a little bit stuffy the last two days, too.

We have been keeping a food diary and the only thing I can see that he has had all three days and was new in his diet is these darn fruit snacks. He loves Angry Birds and we found some Angry Bird fruit snacks (bribery for making it to the potty) while we were at the store. I was so happy that they have NON of his allergies in them. We are going to eliminate those starting tomorrow to see if that is it, but oh my goodness!

Do you guys think it can be these fruit snacks? Is there something else that this could be? The fruit snacks didn't have any of his allergies, could he be allergic to something more? I hate to say it, but it almost made me want to feed him gluten today to get the boy to calm down! (A friend actually jokingly said, "for crying out loud, give that child a piece of bread or something!")

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1desperateladysaved Proficient

Ok, so we are 9 days gluten-free (plus 3 more days prior with one day in between where we gave him gluten). We had been having great results. My son's constipation is pretty much gone, and he says it doesn't hurt to go anymore. He has quit wetting himself. He used to be a very grumpy and defiant introvert, lately he has been very sociable and happy, even singing. He talks all the time now, I didn't know he had such a big vocabulary. He definately seems more 'with it' (we thought he seemed behind academically compared to his peers, but doesn't seem that way anymore).

But now...last night we went to the store and it was like a switch flipped in him, he was literally bouncing off the walls! It was like a manic hyper. I chalked it up to him being tired because when we got in the car to go home, he crashed out hard and it was a little past bedtime.

Then today! He has been a wild child all day! Granted, while he is hyper he is very happy, but it has been extreme! My son's blood test came back negative for celiac, but his allergy test came back with low allergies to wheat, egg, milk, soybean, peanuts, and fish/cod. I have been diligent in not feeding him gluten and I have tried with the others, but will admit that I have not been as diligent. Also, when he woke up this morning, his puckered dry lips were back (they went away when we went gluten-free). He was also stuffy yet sniffly all day (he has gotten a sore under his nose from the sniffles today alone). He was a little bit stuffy the last two days, too.

We have been keeping a food diary and the only thing I can see that he has had all three days and was new in his diet is these darn fruit snacks. He loves Angry Birds and we found some Angry Bird fruit snacks (bribery for making it to the potty) while we were at the store. I was so happy that they have NON of his allergies in them. We are going to eliminate those starting tomorrow to see if that is it, but oh my goodness!

Do you guys think it can be these fruit snacks? Is there something else that this could be? The fruit snacks didn't have any of his allergies, could he be allergic to something more? I hate to say it, but it almost made me want to feed him gluten today to get the boy to calm down! (A friend actually jokingly said, "for crying out loud, give that child a piece of bread or something!")

Check the ingredients on the fruit snacks for artificial flavors or colors. They can do such a thing. They also can contain a large amount of natural fruit sugar.

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Mom2J112903 Newbie

Is he getting a lot of carbs any longer? Or is his diet less carbs now? I wonder if he is going thru a yeast die-off.

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Sesara Rookie

If it makes you feel any better, after the first week of gluten free, where we had horrendous temper tantrums, our son was much more even tempered too, but in the last few days, he has been a bit out of control too (for a 22 month old). However, I have also noticed a big improvement in his stools, which I have been waiting for desperately - they're not perfectly normal yet, but they aren't the grainy sandy loose stuff we've been dealing with for months. So I'm thinking maybe the two are related.

I've also read that 3 weeks is around the time when a lot of parents who went gluten free reported a big improvement - before that point, it seems that every child is variable in the level of improvement. So while it's good to look for triggers, it could also be part of the healing process.

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squirmingitch Veteran

It could also be part of the gluten withdrawal process.

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kareng Grand Master

Maybe he just feels so much better, he's doing all the things he would have done? Parenting may have to change a bit. What we can let slip with a sick child, we may not be able to with a more active one.

I have 2 boys and I spent a good bit of time everyday wearing them out. You may have to find more physical activities for him now that he is becoming the kid he should be. Hopefully, once he gets used to his new energy, he will regulate it some.

As for the sniffles, has he been outside a lot? That's probably where that energy should go. :). He may have a pollen allergy?

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Lfrost Explorer

Check the ingredients on the fruit snacks for artificial flavors or colors. They can do such a thing. They also can contain a large amount of natural fruit sugar.

I wonder if this could be it? His regular fruit snacks have no artificial flavors or colors, these ones have Red 40, yellow 5, blue 1, and red 3. They also have artificial flavor :blink:

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Lfrost Explorer

It could also be part of the gluten withdrawal process.

I didn't even know there was such a thing?! It would make sense, I read that our brain can process gluten similar to Morphine.

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Lfrost Explorer

Maybe he just feels so much better, he's doing all the things he would have done? Parenting may have to change a bit. What we can let slip with a sick child, we may not be able to with a more active one.

I have 2 boys and I spent a good bit of time everyday wearing them out. You may have to find more physical activities for him now that he is becoming the kid he should be. Hopefully, once he gets used to his new energy, he will regulate it some.

As for the sniffles, has he been outside a lot? That's probably where that energy should go. :). He may have a pollen allergy?

This could have something to do with it, too. Yesterday we were stuck inside because it was raining (darn Oregon weather) and I was trying to get some deep cleaning done. I wondered if somehow the dust could have made his allergies act up, too. Dust mites are his biggest allergen, but I was trying to be careful by using a wet cloth for gathering any dust. (actually he started the sniffles prior to my cleaning). I don't think he has any outdoor allergens. The doctor said they tested for indoor/outdoor, but who knows how many they did. We will definately have to hit the park. The sun is out today! :D

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frieze Community Regular

I wonder if this could be it? His regular fruit snacks have no artificial flavors or colors, these ones have Red 40, yellow 5, blue 1, and red 3. They also have artificial flavor :blink:

and pies, cereals, candies and snack foods, are FD&C Blue 1 and 2; FD&C Green 3, Orange B, FD&C Red 3, FD&C Red 40, FD&C Yellow 5 and 6.

this is the list i found, every one of the ones you mention is there....

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MitziG Enthusiast

Food coloring makes my boy CRAZY hyper and gives him panic attacks. Red is the worst.

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Lfrost Explorer

I had never noticed a change in my son's behavior because of artificial colors before! We are good so far today (his little hyper 'horns' have not appeared yet). This just amazes me! I was NEVER one to check food labels before my son started getting sick. I have always taken for granted that we are a 'naturally skinny' family (albeit a bit underweight). I always told people I must just have a high metabolism. I never thought I would be a 'food label checker' before.

I have been reading "Living Gluten-free for Dummies". I teach 3rd/4th grade and I have joked with a friend that this book should be a required read for all parents in my class! Heck, it should be handed out at hospitals to any pregnant mother! :). I never knew the effects of what we put into our (and our children's) bodies--besides the usual food pyramid type stuff that is!

I am just amazed!

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1desperateladysaved Proficient

The book The Feingold Diet for Hyperactive Children shaped my views. I watched a close aquaintance go on the diet and he had a drastic personality change. He went from hyper and tempermental to docile and humorous If he ate something artificial, we could figure out that he did so by his behavior.

Back in high school this had a profound effect on me. It began me on a thirty year quest in natural health care.

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Lfrost Explorer

So while my son's behavior has improved today, we now have strange rashes.

Open Original Shared Link

Any ideas? I wonder if he might actually have celiac? His bloodwork was negative, but I haven"t pushed for a endoscopy since we thought the allergies were it. My main reason for worrying is the extremes of his reactions (to going gluten free--good, and developing rashes--bad). Keep in mind, his allergies by bloodtest came back LOW. His wheat allergy is only .49 (Low is .35-.70).

His milk, soy, egg white, peanut, and fish are all below .35 (clinical relevance undetermined).

I don't get it! I know I haven't deliberately fed him gluten and we try hard to avoid the other allergies. I wonder if there is cross contamination? My girls are not great about wiping up after they eat or make food. I just can't figure this out. His allergies are supposed to be low. His doctor wasn't even very concerned. Originally he said we didn't have to change his diet at all if we don't want to since the allergies are so mild. So even with cross contamination I wouldn't think there would be a reaction unless he ingested large amounts. Help! :(

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squirmingitch Veteran

There could easily be cc from the girls. There could easily be cc from almost anywhere. And YES, it might just be celiac rash. And YES, it can come when gluten-free especially if there's cc. You see, after going gluten-free celiacs tend to have much more severe reactions when exposed to gluten, even trace amounts. I'm going to give you a couple links with photos of dh. I warn you that in the first link some of the photos are pretty severe. Look at the ones of the arms, legs & flanks; they appear more like you sons. Very cute BTW!

Open Original Shared Link

This second link is one we are working on right here on the board in the dh forum. It is new & not many photos yet.

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

The hallmarks of the rash are intense itching, especially at night, often waking you up or keeping you up. Also, it often tends to present bilaterally but not always. Watch for it appearing on say one calf & then the other calf at the same time or within days of each other. One forearm & then the other. One side of the belly & also the other etc.....

And if he gets tiny, clear fluid filled blisters then you will have no doubt. But he may not have it that bad yet. Hopefully not!

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Lfrost Explorer

Thank you squirmingitch. I really have no idea what this is! His rash does look similar to some of the second link. So far nothing has shown up on the other calf, but I will keep a look out. I do know that it itches like crazy (he won't leave it alone) and that it burns (he didn't want me to even touch it when I wanted to clean it up for a picture--that is why I couldn't wipe off the fresh blood smear on the leg picture). Also, the rash on his chin cleared up within 4 days of gluten free. I told my husband we just might need to cut everything processed (even homemade) out of his diet and go with just fresh fruit/veggies and meat, then slowly introduce things one at a time to see what is bothering him in case it is an allergic reaction. It is really crazy. I tell you, this boy is keeping me on my toes for sure!

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squirmingitch Veteran

YVW. Oh, yeah, it burns too & stings. 12 -24 hrs. before it appears it will sting/burn like a fire ant bite but you look & there's absolutely nothing there.

Cutting processed food is a very good idea as salicylates can be a factor & processed foods are high in salicylates (sals).

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  • 1 month later...
mikyraso Rookie

Hi everyone :-> It has been a long time since I posted anything and I am VERY stumped. I need some MAJOR advice here. I DON'T KNOW WHAT TO DO. My 7 yr old daughter was diagnosed with celiac disease in Jan of 2011. The house has been gluten-free since her Dx. I was Dx in May 2011 with IBS. She has been doing really good. with the gluten-free change. There has been a couple of set backs but we have learned how to get through them. NOW I have come across something I don't know what to do. In June my youngest daughter developed "bumps" on the back of her neck along with a very itchy scalp ( no bumps just itching. Then I developed the same itchy scalp with bumps on back of neck down to my shoulder blades. I also have itching all over my arms and face. Then by the end of June my other daughter (she has confirmed celiac disease) also developed the same itching and a few bumps on the back of her neck. It is not Lice or Scabies and the pediatrician had not suggestions other than she wasn't sure what it was and we should see a dermatologist.

I did look at the photos of DH and what I have looks like some of the photo's. I went to a Dermatologist. She took a Biopsy of two spots. She also said that they see a lot of DH and it looks very similar. My question for everyone here what to do about my girls? Could we all develop DH around the same time? My husband doesn't have any of our symptoms so I don't believe it is am allergic reaction to anything. I just am so stumped. ANy advice would be GREATLY appreciated. biggrin.gifbiggrin.gifbiggrin.gifbiggrin.gifbiggrin.gif

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squirmingitch Veteran

Okay, first mikyraso, the biopsy the derm did on you will turn up negative --- well, let's say if it turns up positive then I will fall off my chair right here & now. The reason being is that the medical literature says that you MUST be actively consuming gluten EVEN for the dh biopsy PLUS even then there is a 30+% false neg, rate. And you have been gluten-free since May. However --- did the derm take the biopsies ON the spots or of a clear area ADJACENT to the spots? The biopsy MUST be taken from a clear area adjacent to the spots & not directly on the spots. Now, having said that --- your one daughter is already a confirmed celiac so there is no need to worry about a dx of dh for her as it would be a moot point. I know, I know, you're wondering if it IS dh so you can rule OUT the possibility of it being other things. Okay, it IS strange that all 3 of you got the rash in the same places at mol the same time. Question --- is your youngest daughter gluten-free or is she still eating gluten? Weird as it may be for all of you to get the rash in the same places at the same time --- I've heard stranger things in my life & you are all related sooooo..... A couple more questions ----

Have you changed shampoo or conditioner lately? Did you check to see that the newest bottles have the same ingredients as the last bottles? Did you mention this with your daughters & that 1 is dx celiac to the derm when you saw her?

Another thought. If your biopsy turns up neg. & your youngest is still eating gluten then you could get her rash biopsied.

As to you & the dx'd daughter getting the rash if it is dh being as you are both gluten-free ---- the antibodies which cause the rash take up to 2 years or more to get out of the skin & until they do then a flare of the rash can happen at any time. It can come & go during that time or it can come & make you miserable almost continually. Sorry --- have to be honest here --- hope none of you have to deal with a continual happening for that long but.......

Can you take photos of the rashes on all of you & post them on the dh forum? It would help a lot I think.

Now, it's also known that celiacs have skin problems/sensitivities. They have eczema, psoriasis, dermatitis & all kinds of stuff. I know, I'm not helping much by saying this.

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mikyraso Rookie

Okay, first mikyraso, the biopsy the derm did on you will turn up negative --- well, let's say if it turns up positive then I will fall off my chair right here & now. The reason being is that the medical literature says that you MUST be actively consuming gluten EVEN for the dh biopsy PLUS even then there is a 30+% false neg, rate. And you have been gluten-free since May. However --- did the derm take the biopsies ON the spots or of a clear area ADJACENT to the spots? The biopsy MUST be taken from a clear area adjacent to the spots & not directly on the spots. Now, having said that --- your one daughter is already a confirmed celiac so there is no need to worry about a dx of dh for her as it would be a moot point. I know, I know, you're wondering if it IS dh so you can rule OUT the possibility of it being other things. Okay, it IS strange that all 3 of you got the rash in the same places at mol the same time. Question --- is your youngest daughter gluten-free or is she still eating gluten? Weird as it may be for all of you to get the rash in the same places at the same time --- I've heard stranger things in my life & you are all related sooooo..... A couple more questions ----

Have you changed shampoo or conditioner lately? Did you check to see that the newest bottles have the same ingredients as the last bottles? Did you mention this with your daughters & that 1 is dx celiac to the derm when you saw her?

Another thought. If your biopsy turns up neg. & your youngest is still eating gluten then you could get her rash biopsied.

As to you & the dx'd daughter getting the rash if it is dh being as you are both gluten-free ---- the antibodies which cause the rash take up to 2 years or more to get out of the skin & until they do then a flare of the rash can happen at any time. It can come & go during that time or it can come & make you miserable almost continually. Sorry --- have to be honest here --- hope none of you have to deal with a continual happening for that long but.......

Can you take photos of the rashes on all of you & post them on the dh forum? It would help a lot I think. Call me slow but are you saying you DO think it could be DH for my celiac disease daughter? Even if you are gluten-free can you devel. DH? We have been on vacation this summer and she might have had some CC but I don't know if she was since she didn't present any other symptoms other than the bumps.

Now, it's also known that celiacs have skin problems/sensitivities. They have eczema, psoriasis, dermatitis & all kinds of stuff. I know, I'm not helping much by saying this.

A BIG THANK YOU for responding so quick.I have had eczema (in my ears) for over 40 YEARS and have had NO relief. My celiac disease daughter had problems when we started solids but it seemed to subside after taking her off rice cereal.

My biopsy was taken on a spot AND a clear area. My youngest is not on a gluten-free diet. I haven't used anything new, in terms of shampoo's conditioner, or any type of soap. We haven't even tried a new food. I am a creature of habit and once I find a product the kids will eat then I don't change. Sad to say but I have not checked to see if any of our products formulas have changed . I use baby shampoo and soap on the girls and dove for myself and sometimes the girls.I have used the same products all along but I have read that companies do change their ingredient from time to time. I will do that TODAY. Thanks for the suggestion. I tried taking pictures but with my dig. camera they are too bright and you can't see the rash. I am going to try again when my H gets home.

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squirmingitch Veteran

I think it's possible all 3 of you have dh but it's also possible all 3 of you have some kind of gluten related rash. Your having eczema for 40 years is telling as far as possible celiac for you goes.

Tell me, when your dd was dx'd did they do a genetic test on you & your hubs or your youngest dd? The dx'd dd HAS to have gotten the gene from either you or your hubs.

Is your youngest dd gluten LIGHT b/c of you & the dx'd dd? If she's not then there is a really good chance of getting her rash biopsied.

I'm trying to figure the best, fastest & easiest way for you to get the youngest dx'd if she has celiac also & then from there if both dd's were dx'd & you were the one who passed along the genes then it could be possible for you to end up with a dx if a doc or derm considers all the evidence as a whole. You see where I'm going with this?

And yes, dx'd dd can turn up with dh even though she is gluten-free. It would be more likely if she got cc'd. Well, there's another factor --- celiacs with dh tend to have less GI issues & even the ones they do have tend to be less severe in presentation AND there are "silent celiacs" who display no GI symptoms at all. interesting to note that quite a few dh'ers are silent celiacs. It's possible that you caught her celiac just before she had a dh outbreak & headed it off at the pass by going gluten-free but then every time she gets cc'd it makes antibodies build up in her skin & finally they break out in dh. It's a complicated subject & some of what I'm proposing is conjecture on my part but I'm trying to cover the possibilities. I state when I know something to be true but I say maybe or might when I'm just theorizing. I think you understand how I'm thinking anyway. I just don't want someone coming along & saying I SAID this or that --- you know?

Oh, & did you mention the history & dx'd dd to your derm when she did the biopsy?

Go ahead & see if you can get photos when hubs gets home & maybe try a bunch of different lightings.

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mikyraso Rookie

I think it's possible all 3 of you have dh but it's also possible all 3 of you have some kind of gluten related rash. Your having eczema for 40 years is telling as far as possible celiac for you goes.

Tell me, when your dd was dx'd did they do a genetic test on you & your hubs or your youngest dd? The dx'd dd HAS to have gotten the gene from either you or your hubs.

Is your youngest dd gluten LIGHT b/c of you & the dx'd dd? If she's not then there is a really good chance of getting her rash biopsied.

I'm trying to figure the best, fastest & easiest way for you to get the youngest dx'd if she has celiac also & then from there if both dd's were dx'd & you were the one who passed along the genes then it could be possible for you to end up with a dx if a doc or derm considers all the evidence as a whole. You see where I'm going with this?

And yes, dx'd dd can turn up with dh even though she is gluten-free. It would be more likely if she got cc'd. Well, there's another factor --- celiacs with dh tend to have less GI issues & even the ones they do have tend to be less severe in presentation AND there are "silent celiacs" who display no GI symptoms at all. interesting to note that quite a few dh'ers are silent celiacs. It's possible that you caught her celiac just before she had a dh outbreak & headed it off at the pass by going gluten-free but then every time she gets cc'd it makes antibodies build up in her skin & finally they break out in dh. It's a complicated subject & some of what I'm proposing is conjecture on my part but I'm trying to cover the possibilities. I state when I know something to be true but I say maybe or might when I'm just theorizing. I think you understand how I'm thinking anyway. I just don't want someone coming along & saying I SAID this or that --- you know?

Oh, & did you mention the history & dx'd dd to your derm when she did the biopsy?

Go ahead & see if you can get photos when hubs gets home & maybe try a bunch of different lightings.

No they didn't do any Gen. testing on any of the fam. We have all had blood tests and they ALL were negative. The funny thing is that my dd who was Dx with celiac disease had a Endo BEFORE the blood work. The Endo was pos. and we were surprised to find the blood work was NEG.

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      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.
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