Could Your Retainer Be Preventing Healing? Yes.

[powerofpositivethinking]

I continue to be amazed at all the places gluten shows up 

 

according to this pubmed abstract if you aren't healing while following the gluten-free diet maybe your retainer is to blame...wow.  

 

Open Original Shared Link

 

 

 

Should I have any worry about the composite fillings I have?  

[GF Lover]

I am freaking blown away

[IrishHeart]

well, it's  one 9 year old with a retainer made from one source. It's a unique circumstance. In one child.

 

(and the skeptic in me wonders how gluten-free he was. Adults make mistakes, Kids cheat. just sayin)

 

just recall that pub med abstracts are often published because something is NOVEL, NEW, DIFFERENT, etc.

 

yes, I am playing devil's advocate here.

 

and no, I would not worry about your fillings.

 

and as always THIS IS JUST MY OPINION.

[bartfull]

I'm happy to hear this, not because I want anyone to be glutened by plastic, but because it validates my corn reaction to the corn-based plastics. I think some of the folks here doubted me when I said I had a bad reaction to a bottle of water, and then found out the plastic was made using corn. Even I thought that by the time the corn was made into plastic it shouldn't have any protein left in it. But I DID react, and the fact that this kid reacted to wheat in plastic is kind of comforting to me.

[dilettantesteph]

Thank you for posting this.  It is another thing to try if you are continuing to have symptoms.  It explains a recent experience of mine that I was having difficulty figuring out.  I am also going to check out my son's retainer.   

 

I doubt that this one child has a retainer made of unique materials and all other children's retainers won't be a problem.  

 

It is possible that at the same time that the retainer was discontinued there was also a change to the diet that was the actual reason that the child improved.

 

My guess is that this is something that only affects very sensitive celiacs, or we'd have a lot more celiacs experiencing symptoms.

 

I think that composite fillings are made of different materials than retainers.

[Gemini]

well, it's  one 9 year old with a retainer made from one source. It's a unique circumstance. In one child.

 

(and the skeptic in me wonders how gluten-free he was. Adults make mistakes, Kids cheat. just sayin)

 

just recall that pub med abstracts are often published because something is NOVEL, NEW, DIFFERENT, etc.

 

yes, I am playing devil's advocate here.

 

and no, I would not worry about your fillings.

 

and as always THIS IS JUST MY OPINION.

Looks like we are a few of a dying breed, Irish, who still can tell the difference between solid medical evidence and fear tactics used to perpetuate nutty ideas of where people can be glutened. It only feeds further into this notion

of super sensitivity that has yet to be proven as fact.  I would imagine that retainer material is highly processed and even if there were a gluten component to it, the protein portion would be processed out completely and not be a theat to any celiac, no matter how sensitive they think they are. 

 

The article made some misleading statements in that they claim dental materials are a threat and can contain gluten.  I have had more dental work done, due to having Celiac and Sjogren's Syndrome than most of you people combined. I had one reaction and it was from the excessive amount of xanthan gum used in molding materials for tooth impressions. I called just about every dental supplier east of the Mississippi and they are aware of the problem so formulate their products without gluten.  There is no need to put gluten anything in dental materials because gums work much better. 

 

As Irish mentioned, this was one child.  You do not base fact on the experiences of one child who most likely was cheating on the diet.  A 9 year old kid?  I would think there was something wrong with a kid who did not cheat at that age.  Perfectly normal behavior for that age group.  Plus, considering the amount of adults who cheat, you really think a child this young will eat a stellar gluten-free diet?  This is just another idea that makes the Celiac community look like a bunch of loonies.  I've been doing this for almost 9 years and at no point was I ever gullible enough to think this feasible. I know science can be daunting for some but this is junk science.  You can think any which way you want...that is your right but you better be prepared to hear the common sense side of things from those of us who have done our homework and don't buy into everything posted on the internet. 

 

Focus on reality based medical advice and on healing and being well.  It can happen for anyone, over time, and you will not need to live in fear of the dentist or anything else you run into in life as a celiac. I have dental implants so have a titanium post screwed into my jawbone and a highly processed man made tooth sitting in my head.  I'm on the third one now and I do not fear what the tooth is made from.  It has not made me sick and I can win the projectile vomiting contest when glutened by mere crumbs.....really. 

[bartfull]

Having been "corned" by plastic, I DO believe this story. The fact that it was published by NIH also makes it more believable to me.

 

"Despite strict dietary elimination of gluten, she continued to be symptomatic and demonstrate positive serum markers for active disease. It was then discovered that the child was exposed to gluten from her orthodontic retainer that contained a plasticized methacrylate polymer. Gluten is a common additive in plastics. She discontinued its use and demonstrated symptom resolution and complete normalization of serology."

[Gemini]

Having been "corned" by plastic, I DO believe this story. The fact that it was published by NIH also makes it more believable to me.

 

"Despite strict dietary elimination of gluten, she continued to be symptomatic and demonstrate positive serum markers for active disease. It was then discovered that the child was exposed to gluten from her orthodontic retainer that contained a plasticized methacrylate polymer. Gluten is a common additive in plastics. She discontinued its use and demonstrated symptom resolution and complete normalization of serology."

You can choose to believe whatever you want, barty.  As I stated, I tend to go with real science, not something posted on one kid.  I work in the science field and part of my work is to have knowledge of material science.....like plastics. That certainly does not make me an expert but I have too much common sense to believe this horse pucky.

 

The second paragraph means nothing. You cannot prove that a child of 9 keeps a strict elimination diet.  As much as many people like to think their kids don't lie to them and think they can control their every move today, it isn't reality based.  Kids cheat and that shows up in blood work, like the article stated.  When said child stops cheating because the focus is on their health in a big way and doctors are being visited, their blood work normalizes. Boy, that was hard to figure out! 

 

I am not attacking you in any way, barty, and you have the right to disagree with me.  But you are being a bit too defensive here and need to know I am not trying to insult your intelligence or demean you at all.  Everyone has a right to their opinion and I just have to make comments to show those in doubt or new to this diet that life does not mean you have to live in a bubble when you have Celiac Disease.  Dental work and dental appliances are safe, from a gluten point of view.  However, if you want to talk about why plastics probably shouldn't be sitting in your mouth for a couple of years for other reasons, we could probably find common ground.  This forum is going off in the weeds lately and not sticking to real science which is published and backed up by celiac organizations.  What a shame for the newly diagnosed. They have enough to worry about learning the diet corrrectly without reading this nonsense.

[powerofpositivethinking]

I thought by going to PubMed and searching, I was getting accurate information

 

I am interested in reading the entire write-up when it is released.  I would hope they wouldn't publish something like this if the girl were cheating on the diet. 

 

Does anyone know if they would have to have consent from the parent/child to submit this abstract even if the patient's names are not mentioned?  I would hope that if they did need consent, that would be the time for the child/parent to admit they weren't following it as strictly as they led the doctor to believe.

[dilettantesteph]

Open Original Shared Link

"Clinical Pediatrics (CLP), a peer-reviewed monthly journal, is a must read for the busy pediatrician. CLP contains state-of-the-art, accurate, concise and down-to earth information on practical, everyday child care topics"

[Gemini]

In the short amount of time spent on this subject, I learned a couple of things.  Retainers are very easily scratched so do I need to list the reasons why this would not be good for a Celiac?     That could be the problem......food can become trapped in the scratches and dentists warn about this from a bacteria point of view, never mind a gluten related issue.  So...the child in question cheats a bit on the diet at school because he/she is sick and tired of hearing their parents crank on them to be strictly gluten-free and their friends just brought in some awesome snacks that are not gluten-free and everyone else is eating them.  If the food becomes trapped in scratches and the retainer is not cleaned properly, you have a return of symptoms.  That is far more likely and believable than the gluten in the plastic scenario!

[bartfull]

I wonder why NIH would publish this if they even suspected that the kid was cheating on the diet. I don't believe that all nine-year-old celiacs cheat, especially when it makes them as sick as this kid was described to be.

 

I DO know that CORN-based plastics are made using corn sugar, which has enough of the protein in it to make a corn intolerant person such as myself sick. At the time I drank that water from what turned out to be a corn plastic bottle, I had been doing wonderfully. I had NO psoriasis whatsoever, and hadn't had any for about a month and a half. Yet eight hours after drinking it, with no other changes to my diet, I had a severe flare.

 

I know, corn is not wheat. But I DO beleive this NIH link is very plausible.

[Gemini]

Oh....I do agree that all 9 year olds do not cheat but I would be willing to bet that many, many do.  How can you not when being 9 is all about being identical to your peers, eating what they eat, doing what they do?  It's too bad that so many kids aren't as individual in thinking as we would like but it is what it is. 

 

I know nothing about corn intolerance so can't comment on that.  I believe you reacted, barty, I am not questioning that. But I am fine with corn so am in no position to comment on that one. I would have to do more research. Gluten and dairy issues are enough for me.

 

As far as the NIH....they are not immune from publishing stupid things. Medicine makes many mistakes and I don't think these people are the first and foremost on Celiac Disease. Not even close.  Even many GI doctors are clueless, as we have seen from the many complaints on this forum.  They publish a statement like that based on one kid's experience, without even addressing the issue of cc of a retainer?    I would like to know how they came out with that gem and what "science" it was based on.

[kareng]

My understanding on these types of articles are that they are "case studies".  They are made up of one or a small group of patients - too small to be statistically relevant.  They aren't meant to become the newest scientific or medical breakthroughs or findings.  Rather, they are meant to raise discussion, cause researchers to think in different ways, and stimulate research.

 

For instance, a chemical company that is making "green" plastics out of plant materials might look for info such as this.  It might make them think or test a new product to see if the wheat or corn leaches out.  Or in the case of one such company I talked with, reinforce their reasons for researching algae as a plastic component (I'm sure someone will be allergic to algae but, so far its rare).  A dentist hoping to develop a better retainer might want to look at this and do more in depth research into if the corn or wheat protein is intact and can leach out.

 

To apply this to the article above, more research would be needed to make any real assumptions about wheat in plastics, wheat in this particular piece of plastic,  or even dental hygiene in a 9 year old.  It is interesting, but probably not clinically significant.

[weluvgators]

Thank you for sharing this information!  We are doing remedial orthodontic work to correct issues from bad teeth that formed prior to our understanding the severity of our gluten issues.  And my gratefulness carries our usual caveat that our experiences are unique and not customary for most celiacs.  Next disclaimer:  in addition to our celiac issues, we also have severe wheat/gluten allergy issues.

 

Anyway, we started treatment with a "plate".  It contains the plastic bit like a retainer, but it is permanently fixed.  I took the shotgun approach of put it in, deal with problems if they arise . . . because well, it is plastic.  Anyway, four months later, our daughter has developed chronic respiratory issues with facial swelling that are only partially responding to allergy treatment protocols.  Our orthodontist was grateful for me to bring this case study to his attention, and it helped shape our action plan moving forward - get the plate and plastic out ASAP.  He found the case study to be a very plausible and possible scenario for a cause in the symptoms and issues that we are trying to manage (same material is used in her plate as was found to be the culprit in this case study).  I am so glad that this information was shared on the board, as is my daughter.  Thankfully, he uses a different material for the future retainers that my daughters will need.

[SMRI]

hummmmm....if the plastic is made with gluten, which is highly likely, I could see where it causes problems sitting in someone's mouth for long periods of time like that, especially since the tissues in your mouth are so soft and filled with blood vessels.  It also makes me wonder if my daughter is reacting to HER retainer.....maybe not gluten but something else in the retainer--for her maybe the metal???  She can't wear jewelry or other medals.  She has to put clear nail polish on the back of the buttons of her jeans or she gets a rash, that kind of thing....after several sinus surgeries...I wonder.....

[dilettantesteph]

Thank you for sharing this information!  We are doing remedial orthodontic work to correct issues from bad teeth that formed prior to our understanding the severity of our gluten issues.  And my gratefulness carries our usual caveat that our experiences are unique and not customary for most celiacs.  Next disclaimer:  in addition to our celiac issues, we also have severe wheat/gluten allergy issues.

 

Anyway, we started treatment with a "plate".  It contains the plastic bit like a retainer, but it is permanently fixed.  I took the shotgun approach of put it in, deal with problems if they arise . . . because well, it is plastic.  Anyway, four months later, our daughter has developed chronic respiratory issues with facial swelling that are only partially responding to allergy treatment protocols.  Our orthodontist was grateful for me to bring this case study to his attention, and it helped shape our action plan moving forward - get the plate and plastic out ASAP.  He found the case study to be a very plausible and possible scenario for a cause in the symptoms and issues that we are trying to manage (same material is used in her plate as was found to be the culprit in this case study).  I am so glad that this information was shared on the board, as is my daughter.  Thankfully, he uses a different material for the future retainers that my daughters will need.

 

I am sorry that you had this problem. I hope that your daughter is feeling better.

 

Can you please answer a question for me?  Was it a colored plastic?  My endodontist recently told me that it was colored materials that were most likely to contain gluten so they avoided those.  This didn't make sense to me since gluten isn't colored.  I had some terrible problems recently which coincided with the root canal procedure.  Please notice I do not say that I know that it was caused by the procedure. 

[notme]

good luck with your paranoia, people.  years later, when your kids have permanently crooked teeth, because you buy into this bs, i hope you remember exactly why you spent thousands of dollars on braces, just to have their teeth move back to their original crooked places.  

 

i wasn't supposed to drink soda when i had my braces.  i told my mother i never did.  but i did EVERY DAY.  so, noooooooooo, your kids aren't cheating on their diet/messing up a little.  it must be that retainer.  (really there is gluten in METAL?  wow.  just wow.)

[Gemini]

Arlene.........I couldn't agree with you more.  Although I think it plausible that scratches on a retainer could be a problem if kids are cheating on the diet, somewhere along

the lines of a scratched pan or container, it is a bad road to go down and worry about plastics containing gluten causing a potential problem. One should never put off dental work that's needed because of an invalid fear.  Dental health is very important to overall good health! 

[IrishHeart]

Who dragged out this old thread? I thought this one had died. 

 

Do parents of children with celiac disease really have to worry that their children’s retainers contain gluten?

In a word: NO.

BY : Amy Jones, MS, RD and Tricia Thompson, MS, RD

"Many of you may have heard about the article “An Orthodontic Retainer Preventing Remission in Celiac Disease” recently published in the journal Clinical Pediatrics. In short, this is a case presentation of a 9 year old girl diagnosed with celiac disease. IgA tTG at diagnosis was 172 U/mL (normal defined as < 20). The authors state that despite a strict gluten-free diet her tissue transglutaminase remained elevated. However, when she removed her retainer which was found to contain a plasticized methacrylate polymer which may contain gluten her serology normalized.

A close look at the patient’s serology provided by the study authors shows that at her 6th month follow-up the patient’s tTG level had fallen to approximately 50 U/mL. At her 7th month follow-up, the patient’s tTG level was up slightly to approximately 55 U/mL. At her 8th month follow-up her tTG was approximately 52 U/mL. At this point the retainer was removed. By her 10 month follow-up tTG levels were around 0.

We are concerned that this case study may unnecessarily worry parents over their children’s retainers especially if only the title or the abstract of the study is read (Note to bloggers: it is irresponsible to write about a study if you have NOT read the ENTIRE article).

The lead author was contacted with the following questions:

• Might these tTG levels represent a normal progression?
• Did the child have the retainer the entire time she was on a gluten-free diet? If so, this would suggest the retainer had nothing to do with the "blip" that was seen in tTG levels.
• Was it established that the retainer actually contained gluten or that it was "just" made with a material that may include gluten?
• If it was established that the retainer did in fact contain gluten was the manufacturer of the retainer contacted to ask how much gluten was used to make it?

Zebunnissa Memon MD, responded that yes, the child had the retainer the entire time she was on a gluten-free diet but, “Only when she removed the retainer did her serology and symptoms improve.” Dr. Memon went on to say that, “The retainer was not tested. The ingredients from the manufacturer listed methylmethacrylate: a plasticized methacrylate polymer, in which gluten is a common additive. The manufacturer was contacted but they did not give us information.”

Amy and I responded further that, “Based on the information you provide in table 3, this child's serology fell from 172 U/mL at diagnosis to 50 U/mL at her 6 month follow -up. If she was getting gluten from her retainer it seems unlikely that this would have happened.”

Dr. Memon responded, “This is actually a case that had puzzled us because it was very atypical of the usual celiac cases that we see. On the diet that this child was following, you would expect the serology to have normalized. We can say this because we knew how vigilant the mother was. The only factor that changed from the serology of 50 to the follow up where it had gone down significantly was that the retainer was removed. The diet remained the same. It is possible that the gluten source in the container (sic) was so minimal that it was just enough to prevent normalization of both serology and symptomatology.”

We are still not convinced that the retainer had anything to do with the slight increase seen in this patient’s tTG levels. According to Beth Israel Deaconess Celiac Disease Center, tTG has a half life of 6 months so it would be expected that levels should fall by half 6 months after diagnosis (Open Original Shared Link). This patient’s tTG levels fell from 172 U/mL at diagnosis to approximately 50 U/mL (It is difficult to read the graph and exact numbers are not provided) at her 6 month follow-up. This is a fairly significant drop. It also is the case that by the time the patient’s retainer was removed at 8 months, tTG levels had decreased from about 55 U/mL to about 52 U/mL. In addition, the reference regarding methylmethacrylate as containing gluten is from 1971. We have been unable to find any additional references indicating that this substance contains gluten. Even if it does, methylmethacrylate is one product used to make this child’s retainer and gluten would be a “sub-ingredient” of this product. That enough gluten would leach from the retainer to cause an increase in tTG levels seems a bit extraordinary.

There is so much fear in the celiac disease community regarding unintentional sources of gluten especially among parents of children. We would hate to have parents worrying unnecessarily about their children’s retainers. There does not seem to be enough information provided in this case to demonstrate a true cause and effect between retainer use and tTG levels."

 

Open Original Shared Link

I don't know how many times I have to say this until someone pays attention: people should stop posting alarmist BS rhetoric on here. 

It's driven me right off the forum. I only came back to post the science. I hope readers bother to look at it.

The End.

[weluvgators]

I drug out this old thread because my daughter had a reaction to her plate that was made from the same material as the retainer in this case study. We are still in the process of recovering from the reaction. The damage caused to my daughter's health from this exposure has been a struggle to recover from. I find it fascinating that the plastic manufacturer in the case study would not disclose the material ingredients. I found the full text case study instrumental in shaping our action when we were confronted with our super sensitive celiac daughter having a severe and disabling reaction to her orthodontic device. I recognise that our daughter's allergic/celiac reaction could have been to any ingredient in that plastic. In trying to recover from this exposure, I have been looking at industrial use of gluten. We continue with orthodontic treatment for our children, but our orthodontist is making more informed decisions now that he better understands the scope of our family's immunological response.

I find it perplexing that our orthodontist's office was bemoaning that US dental product manufacturers were so adverse to sharing ingredients that they were unable to import some products due to non-disclosure of customs requirements. Thank you dilettantesteph for your support. The plastic used in the device my daughter reacted to was a pinkish colour, it reminded me of the retainer I used 30 years ago. I wish I understood chemistry better!

[Gemini]

I drug out this old thread because my daughter had a reaction to her plate that was made from the same material as the retainer in this case study. We are still in the process of recovering from the reaction. The damage caused to my daughter's health from this exposure has been a struggle to recover from. I find it fascinating that the plastic manufacturer in the case study would not disclose the material ingredients. I found the full text case study instrumental in shaping our action when we were confronted with our super sensitive celiac daughter having a severe and disabling reaction to her orthodontic device. I recognise that our daughter's allergic/celiac reaction could have been to any ingredient in that plastic. In trying to recover from this exposure, I have been looking at industrial use of gluten. We continue with orthodontic treatment for our children, but our orthodontist is making more informed decisions now that he better understands the scope of our family's immunological response.

I find it perplexing that our orthodontist's office was bemoaning that US dental product manufacturers were so adverse to sharing ingredients that they were unable to import some products due to non-disclosure of customs requirements. Thank you dilettantesteph for your support. The plastic used in the device my daughter reacted to was a pinkish colour, it reminded me of the retainer I used 30 years ago. I wish I understood chemistry better!

How do you know 100% for sure that it was the retainer which caused this reaction?  There are so many variables with reactions, especially in children who could have potentially cheated on their diet, I don't see how it is possible for you to make this statement that it was the retainer.  Irishheart posted an excellent response and yet......you still insist it was the retainer.  How did you draw your conclusions?  I am not picking a fight here....that is not my intention at all but I am genuinely interested as to how you came to this conclusion. 

[kareng]

It's a case study of 1 patient. It isn't a scientific finding! It's just something interesting to ponder and see if they want to do more research. Did any researchers find it significant enough to do actual research on retainers? I haven't seen anything like that posted here.

I'm glad Weluvgators daughter feels better - for whatever reason. But, I agree, that trying to warn all Celiacs off of dental care is a bit much. And that is what some of these comments seem to be aimed at.

[weluvgators]

The symptoms were a chronic cough and continuous postnatal drip that eventuated in severe facial swelling. I took her to the orthodontist concerned we were having infection issues, as it seemed her body was in overdrive fighting....something? He assured me that she was not presenting with infection (we were already on acute allergy management for the symptoms). He advised that she looked to be reacting to her plate. He removed it the next day to make an early transition to her braces, and she immediately improved. Her ability to digest dairy and function of her digestive and respiratory systems seem to have been compromised from the reaction process. She is recovering, just hard to have such a setback when we were doing so well.

[bartfull]

I'm not trying to warn anyone off of dental care, but if you google "plastic made from wheat" you will find dozens of articles about it. Here is one from Kansas State University from 2002: Open Original Shared Link

 

I also saw one about wheat plastic from China. Since the manufacturer of these devices refuses to disclose where the plastic comes from, I think it is reasonable to believe there MIGHT be gluten in SOME plastics.

 

That doesn't mean we should avoid dental work, but if someone (such as gator's child) has a sudden reaction after getting a device, rather than thinking she all of a sudden decided to cheat on her diet, it is reasonable to think it MIGHT be the device causing the problem.