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!

Link Between Celiac And Learning Disabilities?


cruelshoes

Recommended Posts

cruelshoes Enthusiast

My son's pediatrician believes that he has Open Original Shared Link. It is a learning disability, akin to dyslexia, that has to do with writing. He can read and do math several levels above grade level, but is unable to produce coherent/legible handwriting. After many years of struggling with writing, it is nice to have some hope of finally getting some help for him. On one hand I am heartbroken, but on the other hand, it is good to have some answers. More still needs to be done to firm up the diagnosis, but I feel in my gut that this is right.

In doing my research on this disorder, I have read that infants that grow up to be kids with dysgraphia often experience difficulty with digestion. As dysgraphia affects the muscle tone needed for writing, so it also seems to affect the muscles of the intestines.

So this got me to thinking. Is there any link between celiac and learning disabilities? I know I am grasping at straws here, and trying to make myself feel like I didn't cause this in my son (I didn't, but still feel like I should have known or done something differently). I am wondering if any of you knows of any studies or information that would link celiac and learning disabilities. I don't want to be one of those people that thinks everything from sunspots to the Bermuda Triangle is related to celiac. But at the same time I wonder.......

We are now navigating the minefield of testing and 504 plans and IEP's. What fun that is turning out to be.

Thanks for any input.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

I now know that I obviously have motor dysgraphia. My teachers tortured me all the way through school because of it. When I went to school in Germany, everything (including math) had to be neat and done in perfect handwriting (not printing, either). If it looked messy, you'd lose marks, even in subjects like math and history, for instance. They made an exception when it came to in-class essays, because my essays were so good that they couldn't help but give me 100% every time, and just kept me in during recess to copy my essay again (more torture, really, but at least they could read it).

I am capable of (with great effort and concentration) writing about half a page looking reasonably nice, after which my writing deteriorates and becomes extremely messy. Also, my hand and arm will get very painful.

I now will write my letters on the computer and print them out, then sign them by hand (I have to even concentrate when signing things, because otherwise I might make mistakes!). My kids tell me that it is rude to not write personal letters by hand. But I tell them that people would prefer to get a typed letter to no letter at all. B)

If I would have grown up now, I would get a laptop computer (at least definitely in high school) to use in class. Typing is so much easier!

As the Wikipedia article states, dysgraphia is common in people with Asperger Syndrome and Tourette syndrome. I guess I come by it honestly. <_<

If that is what your son's problem with writing is, be glad he is being diagnosed now. It will make life so much easier for him!

And I have my doubts that it has anything to do with celiac disease. But of course, I may be wrong.

Link to comment
Share on other sites
buffettbride Enthusiast

You are definitely not crazy thinking there is a link between celiac and learning disabilities. Celiac can cause a myriad of muscular and neurological problems that would certainly make "learning" difficult for adults and children alike. From the basic level of getting "brain fog" and ADD-like when glutened (which is what happens to my daughter), there has to be a spectrum of learning issues abounding with Celiac, especially the longer it goes untreated.

Link to comment
Share on other sites
Darn210 Enthusiast

Colleen,

How interesting that you brought this subject up . . . recently, I've been trying doing a little research on my son. I came up with dysgraphia. I was wondering what led your pediatrician to suggest that . . . Did you have a conversation with him/her? Symptoms?

I initially thought some sort of mild dyslexia but googling led me to dysgraphia. My son seems to be doing OK (at grade level) with his reading, but spelling is horrendous. Studying/practicing for spelling tests are pure torture (for both of us). The teacher has put him in the lower level spelling group to work on site words. If he can sound out a word (short vowel or long vowel with a silent e) he's usually OK. If he can't, he throws everything in but the kitchen sink. You can work for a half hour . . . think you've made progress and then 20 minutes later ask him to spell "stream" and it will come out "stryhme". Can't seem to get him to use his upper and lower case letters properly either. And he has a hard time staying on the line (writing straight).

My son is eight also (I see your son is eight from your signature). How do the symptoms compare? How do you know if it's just a kid in a hurry or not really paying attention vs a learning disability.

Link to comment
Share on other sites
Robinlc Newbie
My son's pediatrician believes that he has Open Original Shared Link. It is a learning disability, akin to dyslexia, that has to do with writing. He can read and do math several levels above grade level, but is unable to produce coherent/legible handwriting. After many years of struggling with writing, it is nice to have some hope of finally getting some help for him. On one hand I am heartbroken, but on the other hand, it is good to have some answers. More still needs to be done to firm up the diagnosis, but I feel in my gut that this is right.

In doing my research on this disorder, I have read that infants that grow up to be kids with dysgraphia often experience difficulty with digestion. As dysgraphia affects the muscle tone needed for writing, so it also seems to affect the muscles of the intestines.

So this got me to thinking. Is there any link between celiac and learning disabilities? I know I am grasping at straws here, and trying to make myself feel like I didn't cause this in my son (I didn't, but still feel like I should have known or done something differently). I am wondering if any of you knows of any studies or information that would link celiac and learning disabilities. I don't want to be one of those people that thinks everything from sunspots to the Bermuda Triangle is related to celiac. But at the same time I wonder.......

We are now navigating the minefield of testing and 504 plans and IEP's. What fun that is turning out to be.

Thanks for any input.

Wow~!~! What a coincidence.. I to just went through this. My children 4 of them have several learning issues between them, and i have celiacs. I just spoke in depth with the pediatrician about the possible link between them. He assured me that they have seen NO corrilation. I being persistant, called the pediatric gastro.. He too assured me NO link between the two. Thirdly i called the pediatric neurologist he also said no link.. So I am relaying the ino.. No link and No improvement with a gluten free diet. I do have my children tested annually for celiacs, none so far have tested positivly!! But please call your pediatrician and have the conversation. As for the IEP, get head stronge.. Find a good advocay group... Get a good therapist. That will make all the difference! OH yeah work with your teacher to get on the same page for what is best for your child.. Smile it could be worse!!

Link to comment
Share on other sites
mommyagain Explorer

Hopefully your school considers dysgraphia a learning disability. Ours doesn't. They say that it is a fine-motor control issue, not a learning disability. They say that we need to make her practice writing at home more... yeah, I'm gonna make her write after school when her hand hurts so bad she doesn't want to hold anything in her hand... RIGHT! Another problem for us is that, so far, dd's dysgraphia isn't causing her to work below grade level. She is in 1st grade, reads at 7th grade level, math is at 4th grade level, spelling and handwriting are 1st grade level. Our school says, "See, she's working at grade level, so she's fine!". GRRRRR

Anyway, I know my own handwriting has improved since I went gluten-free... along with my ability to concentrate (and spell correctly). So that brings the question, is your son gluten-free? My dd is not, and probably won't be unless I get her tested and can "prove" to my husband that she has celiac.

cruelshoes - I wish you all the luck in the world with getting help for your son. It is so hard for kids when they end up thinking they are stupid (or their teachers think they are) just because of their handwriting.

Link to comment
Share on other sites
missy'smom Collaborator

My 9 yr old son has an ADHD diagnosis and I've been wondering if he has dysgraphia in addition, which is possible, and he also frequently reverses numbers and letters, which is whole nother thing. But teachers etc. can't see past the ADHD label and everytime I bring it up they think I'm just a mom who's in denial and my kid's someone to "put up with" as his teacher said last year. I would like to get him tested for some other things, learning disabilities, allergies, etc. but I know it'll be a battle and I don't want to put him through more than I need to. Right now I'm trying to get my health back, educate myself and prepare to pick my battles carefully. Having the doctor on your side will be a big help I think.

On another point, a while back I was hoping that he had celiac disease instead because it's very treatable and hope for recovery. Not the case with ADHD. He has tested clearly negative for celiac disease. I would try a gluten-free diet just for the heck of it but DH would have to be on board, plus I'd have to deal with school, parties etc., and that's not going to happen without a clear medical reason, which I don't have.

We have a state LDA-Learning Disabilities Association here and they will even send an advocate with you to the IEP meeting.

I totally understand where you're coming from mommyagain.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Fiddle-Faddle Community Regular

My son was never officially diagnosed with this, but he did have several years of OT which helped enormously with this, as did Suzuki violin lessons (no kidding--it helped amazingly--something about using aural pathways to open up eye-hand-coordination neuro pathways).

One thing that helped on both counts was learning to hold the pencil lightly and NOT pressing hard. More difficult was learning to write more slowly. He still has trouble with this--his mind works so quickly, but his hand can't keep up!

Graph paper is a must for math problems!

Link to comment
Share on other sites
Ursa Major Collaborator
Graph paper is a must for math problems!

In Germany you can't use anything but graph paper in math, its a rule. But that doesn't help with text problems.

I wished here they'd use graph paper, though, it keeps columns lined up and avoids many mistakes.

Link to comment
Share on other sites
Idiote Savante Goddess Rookie

My daughter has both dysgraphia and dyscalcula (sp?). She solved it by learning to type AND by being told by a firefighter she admired that "to do like a firefighter" and write everything in block letters. She couldn't ride a bike til she was 10 or tie her shoes until she was 12 or 13. She has almost no spatial reasoning ability, but has incredible conceptual thinking abilities. She is 21 y/o and still can't do long division but is trying to learn it now because of her job. She has an IQ in the 130s and has read at a graduate school level since 4th grade. We were lucky: we found a very good educational psychologist in private practice who helped us a great deal.

Now that I'm about to find out if I have celiac disease, I'm beginning to wonder if she does. We both had "soft" neuro signs as young children -- couldn't skip, couldn't use scissors well, were always very spacey unless interested in the subject, still can't catch or throw a ball with any accuracy -- I can't remember them all.

Oh -- Ursula -- I've seen Van Gogh's notebooks -- he used graph paper for everything.

Link to comment
Share on other sites
kbtoyssni Contributor

This isn't the most scientific perspective, but when I think about the brain fog I get when glutened - the inability to focus on anything, the inability to construct a logical sentence - if I were a kid in school I'm sure my teachers would think I had a learning disability. Hopefully going gluten-free will help.

Link to comment
Share on other sites
Ursa Major Collaborator

I believe I also have dyscalculia, and so does my youngest daughter. I sort of faked my way through life, by developing all kinds of coping strategies to deal with the math problem. I can handle most simple arithmetic most of the time. But when I am under stress, I need a pen and paper, and even then my brain may just shut down and refuse to cooperate. I feel so stupid when I can't solve the simplest math when stressed!

And I also have an IQ of at least 130. Which is no help, though.

I just recently figured out that not everybody has to support their hands/arms with something (leaning an elbow on the table, or guiding your right hand with the left) when drawing, painting, cutting or anything else that requires fine motor skills! It seemed so normal....... and it is, for me. I bought an easel for painting a while ago, but can't use it, because my hand would be too wobbly up in the air.

Missy's mom, do you know that ADHD is one of the symptoms of gluten intolerance? So what your son tested negative for celiac disease, first of all, the blood tests aren't very accurate. And secondly, he may not have celiac disease but non-celiac gluten intolerance, which is known to cause more neurological issues than digestive problems.

You might want to test him with Enterolab, or just give the gluten-free diet a try. His ADHD may just completely go away!

Link to comment
Share on other sites
cyberprof Enthusiast

Who knew?

I have always had trouble writing. My dad has the same writing style as I do, and I wondered about the inheritability. And now my DS has the same thing. We are going through the testing phase for him.

We're lucky in that DS has bad writing but that is the only manifestation. His IQ is really high (160) and he is not affected except for writing, for which I am very thankful. I don't know my IQ, but it is not genius level but I have a bit of the dyscalculia along with the dysgraphia -- which was made worse for 3-4 years due to "brain fog".

Now I know I really should get DS off gluten, diagnosis or no.

Link to comment
Share on other sites
Fiddle-Faddle Community Regular

Ursa--wonderful picture! Both your daughter and grandbaby are beautiful!

Just curious--are you still learning violin? Does that change anything for you with the dyscalculia?

Interestingly, the R arm doesn't really support the bow--the strings do. The arm just guides the bow back and forth and adds weight when necessary. But most violin students don't learn this till they are quite advanced.

I was wondering if the facts that the strings are supporting the bow, but the arm still requires a great deal of control and strength might gradually help (the muscles?) (the brain?) (the neurological connection?) to overcome the discalculia? Plus there's that aural pathway being developed and used--wonder if that helps, too?

Link to comment
Share on other sites
cruelshoes Enthusiast
How interesting that you brought this subject up . . . recently, I've been trying doing a little research on my son. I came up with dysgraphia. I was wondering what led your pediatrician to suggest that . . . Did you have a conversation with him/her? Symptoms?

My son is eight also (I see your son is eight from your signature). How do the symptoms compare? How do you know if it's just a kid in a hurry or not really paying attention vs a learning disability.

Sorry this is so long.

My son is 8 and in the third grade. His teachers (from preschool on) have always commented that his writing skills are poor. They have always said that he needs to work on his fine motor abilities, and

that it would improve. We had him evaluated by an occupational therapist in the first grade, but his writing was found to be at grade level.

Fast forward to today. His writing has not improved since first grade. He holds his pencil in an akward fashion, and can't seem to change it, no matter how many times I remind him. He reverses many of

his numbers. His letters have funny spacing and he forms many of them backwards (the letter comes out somewhat right, but when he writes it, he starts from the wrong side. He forms a lower case "e" from the bottom instead of the middle, if that makes sense.) He complains that writing is painful, and it takes him SO long to complete any work. I asked him where it hurts, and he says his hand and all the way up his arm. He has a tendency to rush through his homework (I think because he knows he won't be able to get it right), and says that he hates to write. No mater how hard we work at it, nothing changes. He is getting behind at his schoolwork and he says kids are making fun of his writing and callind him "retard". One little beast of a girl told him he had the worst writing in the whole world. I wish I knew which one it was so I could go pinch her. I don't really mean that - or do I??? :ph34r:

He cannot tie his shoes or use a fork very well. If you watch him doing it, you can tell something about it is not right. His grip looks awkward.

His reading is above grade level. Last time he was assessed, he was at the fifth grade level. His math skills are also above grade level. However, most of the numbers he writes are either reversed or illegible.

I really believe that it is him not being able to do it rather than him just being in a hurry, just by how upset the whole process of writing gets him. If he tells you a story, it will be a long epic with lots of detail, but if he tries to write the same thing, it will be one or two lines that you can barely read.

The pediatrician loked at the writing sample I provided and agreed that there is an issue. She had him write a few lines and took a look at his grip and posture. I know this is not enough to be a difinitive diagnosis, but it was enough for her to refer us on for more testing.

I have submitted my formal request for evaluation, and we have a meeting scheduled for 10/31. I learned it really makes people run around like their hair is on fire when you send things to the district Special Ed director. That was kinda fun to watch.

Another thing that has been recomended to me is a special pencil grip called Open Original Shared Link, which looks pretty wierd but is supposed to work really well. We have tried all the other pencil grips, but this one is a new one to me.

Thanks for everyone's responses. Sean is gluten free and has been for 2 years - we have a totally gluten free house. He was diagnosed just after I was, when we screened him as a first degree relative. He had no symptoms, yet his damge was nearly as severe as mine was. I still have that nagging feeling that if we had only known earlier and known to take gluten out of his life, some of this might have been avoided. It's probably faulty thinking, but I stil need something to feel guilty about. ;)

Link to comment
Share on other sites
Fimac Newbie

We discover my son's celiac will looking for his learning disabilities. He is Gifted/LD. LD's are a slow processing speed resulting in dysgraphia and he has a rote auditory memory problem.

He had some improvement when gluten was removed from his diet. He had another slight impovement when dairy was removed from his diet.

To the person who had a problem with spelling. What technigues do you use to learn spelling ? Ds had to visualise the word before he can learn it. Rote memorisition does not work for him.

While looking for sons LD's it looked like the gluten and caesin may have contributed greatly to the problem he lost abilities as he grow.

I am currently reading books to the biomedical approach to autism. Not that he has autism, but he does have asthma. Book I started with does see a link with autism,ADHD, asthma and allergies. I now think that we will try supplements and probiotics to see if there is an improvement.

Link to comment
Share on other sites
Ursa Major Collaborator

Colleen, how could you have known about the celiac disease earlier, with the ignorance about it all around us? I had never heard of it until I was in my fifties, and even then didn't apply it to myself until I had been awfully ill for months (when it got to be full-blown celiac disease, that a doctor should have recognized, but still didn't).

You are doing all you can. Maybe there is some physical therapy that will help Sean in the long run. And if not, they might just allow him to use a laptop computer in school, eliminating the torture. I bet once he learns to type properly, he'll be writing down those epics for everyone's enjoyment.

Alison, I had to give up my violin lessons in the spring, because I simply didn't have the energy for practicing. My left arm and shoulder would hurt so badly as well, that it took the fun out of it, even without the exhaustion.

Plus, my teacher left to go to university (studying viola), she was only 18. That girl was amazing, playing in four orchestras (including the Toronto Symphony Orchestra) as well as working a part-time job and taking lessons herself.

There is another teacher, a young man, who teaches violin and fiddle (fiddle is really what I wanted to do, but you first have to learn to play the violin reasonably well).

Anyway, I haven't given up on it for good. I am taking recorder lessons right now, which cost me $96.00 a month, with taking a one-hour lesson every second week. Right now I don't have the money or energy for more. I think I'll take up the violin again in the spring, if my energy level improves.

Link to comment
Share on other sites
Fiddle-Faddle Community Regular

Glad you have music in your life! But sorry to hear that violin was hurting your arm. There are some stretching exercises I learned this year in PT that really help with that. Let me know when you take lessons again--I also might have some good shoulder rest ideas for you.

Would you like me to try to find you a Suzuki teacher in your area?

If your teacher was playing in the Toronto Symphony at 18, wow, she must be amazing! I look forward to seeing her on stage here sometime! Or maybe hear her as soloist, that would be nice, too!

Link to comment
Share on other sites
Darn210 Enthusiast

Colleen, thanks for sharing all that info. I'm afraid it just means more questions on my part, though ;) . Am I right in assuming this is one of those things that people can have a mild form of (as oppose to something like Celiac disease)? Who is your son going to now for his evaluation? Is the school doing that?

I see many similarities to my son (his letter formation is odd - prefers to start at the bottom). Any time he has to write something, we have to break it up into sessions or figure out ways to reduce the total number of words written. However, his handwriting is legible and although not improving very quickly, it is improving. I will have to pay more attention to his grip - I've never noticed it being odd - I think it's OK. And I will have to (subtlely) question him about hand and arm pain.

Fimac, I would love to hear some ideas on improving spelling. How do I get him to visualise the word? I guess I truly don't understand what you mean, there. I can believe that the rote memorization is not working. Some of the things we have tried are flash cards, working with scrabble tiles (where he only has the letters to make the word and then again when he's got a few extra tiles), and word triangles (a writing excercise from the teacher). We run into problems because he doesn't want to practice writing the words because "I just got done writing all that other stuff" <said with a whine> <_< .

I totally get that what works for one kid, won't necessarily work for another. I think where I have trouble is that rote memorization worked for me and I'm having a hard time coming up with another way to present it to him.

Link to comment
Share on other sites
Fiddle-Faddle Community Regular
I see many similarities to my son (his letter formation is odd - prefers to start at the bottom).

My son made his letters this way, too! He made his check marks backwards, tooo.

We broke the letters into individual strokes, like Chinese Calligraphy. Practice writing the first stroke (down and to the left for capital A) 5 times, then the second stroke 5 times, then put the two together, then the third stroke, etc.

I know it sounds tedious, but you can turn it into games with dice and cards.

For the dicegame, he has to roll the dice, and that's how many times he has to write the stroke.

For cards, have him pick a card. If he draws a number card, that's how many times he has to do the stroke--but if he draws a face card (Jack, King, Queen), then YOU have to do the stroke! (They love that part--just make sure he watches you do it so they get something out of it. You can do it wrong on purpose and have him correct you.) If he draws a 9 or a 10, tell him you'll do the first 2 strokes for him, and then he has to do the rest.

Keep it short--maybe one new letter a day, plus a couple of "review letters" after he gets a few under his belt.

Link to comment
Share on other sites
Fiddle-Faddle Community Regular
Fimac, I would love to hear some ideas on improving spelling.

I made up a story to go with each spelling word, and the story would explain what the stupid letters that don't make any sense do. For example, in the word "fright," the g and the h are so frightened, they don't make a sound.

Link to comment
Share on other sites
Ursa Major Collaborator
For example, in the word "fright," the g and the h are so frightened, they don't make a sound.

That's cute, I like it! I bet kids would get a kick out of silly stories like that, too. I know my seven-year-old granddaughter would surely giggle at that.

My teacher was teaching the Suzuki method, that's what they use for violin lessons in that music studio. My book is book one of the Suzuki method. Which I like, because it goes one step at a time. Together with the celiac disease you sent me, it is perfect.

I have a nice shoulder rest. The problem was exhaustion more than anything, due to adrenal problems.

Link to comment
Share on other sites
Fimac Newbie

Spelling

"The Spelling Book" by Gladys Rosencran's Might help.

What works with ds is to make your own flash cards. If he cannot spell the word he takes the card away and looks at it trys to break the word into smaller words. They do not have to be real words. He also looks to see if he can change the pronunciation to help him. He continues to look at the word until he has a picture in his head.

When making your own flash card you can use diffrent colours and even use pictures.

Ds is not helped by writing out the words or helped by rote memorisation.

Link to comment
Share on other sites
Idiote Savante Goddess Rookie

"He cannot tie his shoes or use a fork very well. If you watch him doing it, you can tell something about it is not right. His grip looks awkward.

His reading is above grade level. Last time he was assessed, he was at the fifth grade level. His math skills are also above grade level. However, most of the numbers he writes are either reversed or illegible.

I really believe that it is him not being able to do it rather than him just being in a hurry, just by how upset the whole process of writing gets him. If he tells you a story, it will be a long epic with lots of detail, but if he tries to write the same thing, it will be one or two lines that you can barely read."

Just like my daughter. I'd forgotten about the fork issue -- for years she ate with her fingers whenever she could get away with it and now eats "Oxford style" (fork always in left hand, tines pointed down -- none of this cut-meat-with-right-hand-whilst-holding-it-in-place-with-the-left-set-knife down-switch-fork-to-right-hand stuff). It makes her grandmother cringe, but hey, she's not using her fingers.

But the kid can do any kind of artwork without a hitch: sculpture, painting, beading, sewing.

And the same child is now (despite years of "Well, we're not sure if it's Asperger's or Childhood Bipolar") living independently, working full time, self-assured, and well-liked by her peers and her employer.

Link to comment
Share on other sites
Jodele Apprentice

This is what I know.

Dyslexia is caused by not enough folic acid while pregnant. During the 17th week of pregnacy the white and gray matter mix in the brain of the fetus and also it can cause sinal byfida and club feet. Both my sister and I have dyslexia and my sister also have sinal byfida and club feet. What causes low folic acid. I believe that my mom has celiacs and she still has low folic acid even when she is on folic acid pills. My middle dd is showing signs of having dyslexia now. The quetion is did celiacs cause this or not having the right nurtition for the growing baby cause it.

Jodele

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • 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...