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IrishHeart

Member Since 26 Jan 2011
Offline Last Active Private
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#930835 Could Your Retainer Be Preventing Healing? Yes.

Posted by IrishHeart on 16 September 2014 - 11:59 AM

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 (http://www.bidmc.org...ase.aspx#normal). 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."

 

https://www.glutenfr...ontain-gluten/8

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. ^_^


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#930111 New Here And Need Help With School Policy

Posted by IrishHeart on 09 September 2014 - 10:58 AM

It should then not be stated as a fact per board rules: "5) Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry."

 

Oh come now, Steph..let's be real here ^_^

 

I have seen dozens of flagrant violations of this particular rule, especially on the super sensitive section where people's "anecdotal evidence" is ALL that is ever used to support various "theories" and thoughts and when moderators have asked for sources, we've been blasted for it.

 

I think you're taking issue with StephanieL here for no good cause. She's a mother of a child with severe allergies who has years of experience and

she is allowed to voice her thoughts without being jumped on for this sentence.

 

IN MY OPINION.

Are you serious?  I am stating there are people who are sensitive enough that they need certain accommodations to be safe in a school environment.  I have stated SEVERAL times that they are few and far between. I have stated that there are ways to make accommodations so that every student is kept safe. 

 

I am sorry that my years here on this site and my years living with a child with life threatening food allergies doesn't give me any credibility with you however may people here post personal EXPERIENCES.  I do not have a study on how many kids need these kinds of accommodations but that does not mean that it doesn't happen.  Again, as I stated most likely because they are few and far between. 

 

I'm really trying to understand what your issue is.  There is a rule and the OP can fight it or deal with it however they see fit. Why are you questioning what I know and have seen, because there isn't a study on it?  

 

I am done with this thread as I obviously have nothing credible to add.

 

You have every right to voice your thoughts and I find you very credible. I find nothing wrong with your statements and I hope you will continue to help other parents of children with allergies. 

 

Please do not get driven off--that would be a huge loss!

 

I know a few people who are highly allergic to various foods and substances (one on this board), so I did not find your statement unreasonable or unfounded at all!


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#930089 The What's For Dinner Tonight Chat

Posted by IrishHeart on 09 September 2014 - 09:22 AM

PURR

 

I like your kitty Kat, K. (and you think I don't notice). Also like your quote--good one. ;)

 

Don't forget to tell those you love that you do...today.
 

 

I :wub:  you. I am thinking about you and your Mom and sending hugs.

 

 

 

Okee dokee, this evening is shaping up to be pizza night. (what? you say! but it is not Friday night!) I know. I know.

 

but my friend with the G F bakery sent me some nice fresh flour mix and it makes terrific pizza shells and rolls.

 

Baking later and well, if the dough  is right there, rising and all, I figure.....


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#930013 How Did You Heal Your Gut? Besides Giving Up Gluten...

Posted by IrishHeart on 08 September 2014 - 02:56 PM

Time. Probiotics. Enormous patience. ^_^

 

Despite what some internet sources may say, "magical healing aids" for "sealing leaky guts" do not exist. No science or medical basis for any of them, sorry. 

 

The gluten- damaged gut lining in the vast majority of celiacs will heal when you remove gluten. 

 

Some of us have other food intolerances, but those do not CAUSE a damaged gut. This is a huge misnomer.

 

Food intolerances result from a damaged gut and a compromised immune system. There is no magic potion to heal a gut lining...just time and strict avoidance of gluten.

 

So as much as none of us like it, I tell you this honestly: TIME is your ally. I was much like Gemini---and it took me nearly 15 months before I started to feel as if things were changing. It took me 3 years to start exercising again and to stop hurting from burning neuropathy and bone and muscle pain 24/7.

 

But I went many, many years before being diagnosed and my body was deeply compromised. I have a few AI diseases, too, but I am doing so much better now. :)

 

This is not the "norm", ok?. Most people heal more quickly.

I know you can get frustrated (and I do not blame you) but if you are G F, taking probiotics, drinking water, eating well, getting enough sleep  and gently exercising and avoiding stress, you are doing all you can to get well. 

 

Hang in there, hon. 


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#929878 The What's For Dinner Tonight Chat

Posted by IrishHeart on 07 September 2014 - 04:02 PM

geesh..almost forgot. I found Talenti Chocolate Covered Sea Salt Caramel Gelato Pops at BJs.

we walked a mile first, then ate one.

Now, you all know Sunday night is ice cream night in our house....so...

do you think it "offsets" the calories?  ^_^ the walking thing?

c'mon lie to me.

 

ps. looks like even Walmart's has them!

 

http://www.walmart.c...-count/35772278


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#929460 The What's For Dinner Tonight Chat

Posted by IrishHeart on 03 September 2014 - 04:13 PM

Well, strike one for my first night at the hotel.  NO refrigerator or microwave in the room.  The guy at the desk offered to store my food in the fridge in the employee area so that is good.  The hotel is next door to a grocery store so I walk over to find something for dinner.  I finally found some cut salami that was gluten-free so I added that to the cheese and crackers I brought for snacks.  I was hoping to get something hot at the deli but the girl gave me the deer in the headlights look and said "gluten, that's sugar right"..so I passed.  The only restaurant in town besides Kentucky Fried Chicken is called Bread, Brew and something....nothing gluten-free there.  One more night here...

 

 

I am stumped by this because I just traveled over 1300 miles in 2 weeks and I found food at every grocery store even in a tiny town in Southern Georgia.. I also made sure I got hotel rooms with a fridge and a micro. It's just better for us if those things are available. Or at least find one with a micro in the lobby.

You have to assemble a to-go kit with a knife, some utensils, zip locks, paper plates, paper towels, bowls I picked up at Walmart's for a buck--that sort of thing. I have a small bottle of dishwashing soap too.

Not picking on you here, hon--not at all!

but seriously....  advance planning is essential and every supermarket has food you can eat. Almost all packaged deli meat  is gluten free. It is RARE for gluten to be in deli meat (mortadella is about the one that any company has ever told me will contain it)

You can eat ,Cheese, yogurt, fruit, cut up veggies, peanut butter. Bring crunchmaster crackers, kind bars, chex G F cereal, nuts etc....buy a small bottle of milk. Did you bring ANYTHING with you? I also have canned soup and a can opener in my car when I travel.  

it's not good to be hungry when you are trying to recover. 


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#929277 The What's For Dinner Tonight Chat

Posted by IrishHeart on 02 September 2014 - 03:46 PM

Yum

 

Ski, my sweet...You know I don't lie....this french onion soup is fantastic. YUM indeed. :)

 

lol.....J says: Tell the girls....it's "deliciouso".

That's his best compliment....well, that and licking the spoon and the bowl and giving my some hugs and lovins.  ^_^

and happily cleaning up....


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#929090 The What's For Dinner Tonight Chat

Posted by IrishHeart on 01 September 2014 - 12:25 PM

There is some sick, twisted obsession with lean pork. I don't know what's up with that, but I always snag myself the beautiful cuts with some fat on them when I can find them. They're just so much tastier! Glad yours turned out good.

 

Whaaa? I'm with you.... who is touting this no marbled fat in meat myth? where? where?  ^_^

 

Nonsense, I say....you need some fat for flavor! Marbled meat = good quality.

 

 “No human studies have ever shown that supplementing the diet with beef increases LDL cholesterol. However, studies have shown that oleic acid supplements can decrease LDL.”

When doctors warn you away from beef that is not lean, they are probably thinking about external fat, which is typically trimmed off to a constant level for all grades of beef. “There's a health benefit to eating well-marbled beef, compared to the lower grading kind,” Smith says. More marbling means more oleic acid, which means less of the potentially harmful saturated and trans-fatty acids that have given beef a black eye."

 

http://www.cattletod...er/CT1715.shtml

 

just sayin..... -_-


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#929004 Depression Linked To Celiac Disease - Emaxhealth

Posted by IrishHeart on 31 August 2014 - 03:08 PM

Seriously? this is one of the most ridiculous articles I have ever seen posted here on c.com.

 

Of course unDXEd patients report depression...why? because  multiple vitamin and nutritional deficiencies and anemia will cause it....

but the headline--AS USUAL--is clearly inflammatory and misleading. 

 

I wonder...

why can't you stop the flow of these so-called "news articles". i.e.blurbs-----edit them out--- they do not offer anything past an inflammatory headline .....NO scientific or medical research is cited and no studies are offered that show how nearly everyone post -diagnosis is NOT DEPRESSED!!

 

i just recently spoke about the "news flow" on here on Gluten Dude's site when someone used one of these
generic news feed  articles to say that "even celiac.com says there is no such thing as NCGS!"

 

I defended this site, and I said to the poster, I think you are misreading the intent of the article, but it's not easy when the news articles flow through and people see them and use them as "evidence".

 

take a look!

 

http://glutendude.co...ck-cancers-ass/

 

Ernest Wallo on August 26, 2014 at 12:46 pm said:

The big media keeps doing everything it can to ruin the Gluten Free diet. All I can say is G-Damn Dr. Peter Gibson in Australia.

 

Now Celiac.com is saying that Gluten Intolerance is false. http://www.celiac.co...tiny/Page1.html


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#928998 The What's For Dinner Tonight Chat

Posted by IrishHeart on 31 August 2014 - 12:43 PM

I own this ATK cookbook, I gave it to 2 friends as gifts and I admit I have not made a single thing from it yet.

:D but that's only because my thighs do not need any of those things right now.

 

I also own several other cookbooks, several gluten-free ones too and I love to recipe search, adapt and create. Even though I am a decent cook and baker, we never stop learning and playing with our food. One of the ways to get over fearing food and being intimidated by the G F life is to embrace cooking and baking once more. 

 

For the relatively fair price and the information presented in the book, I'd suggest buying it as well, icelandgirl. 


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#927945 Recall

Posted by IrishHeart on 19 August 2014 - 05:08 PM

Thanks, Barty :wub:

 

just to clarify which ones are recalled:

 

A unit of Hain Celestial Group Inc. said Tuesday that there have been reports of four illnesses that may be related to the nut butters. They were sold under the brand names

Arrowhead Mills Peanut Butters,

MaraNatha Almond Butters and Peanut Butters,

and private label brands for Whole Foods, Trader Joe's, Kroger and Safeway. A total of 45 production lots are affected.

They were sold in Canada, the Dominican Republic, Hong Kong and the United Arab Emirates as well as the U.S.


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#927875 The What's For Dinner Tonight Chat

Posted by IrishHeart on 18 August 2014 - 05:21 PM

The purr sounded like the sound Bugs bunny makes just before he says "what's up doc"? :D

 

like a very soft  "fffffcccch"..like the rapid tiny soft sound of teeth chattering...(when my cat sees a bird, she does this sound)

 

I had to ask the girl "is that her teeth chattering ?" she said "she's purring"

 

it was like this, only softer sounding.

 


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#927157 The Funny Pages - Tickle Me Elbow - The Sequel

Posted by IrishHeart on 12 August 2014 - 04:25 AM

 A famous Viking explorer returned home from a voyage and
found his name missing from the town register. His wife insisted
on complaining to the local civic official, who apologized profusely
saying, "I must have taken Leif off my census."
 
^_^
 
Evidence has been found that William Tell and his family were avid
bowlers. Unfortunately, all the Swiss League records were destroyed
in a fire, ...and so we'll never know for whom the Tells bowled.
:rolleyes: 
 
A skeptical anthropologist was cataloguing South American folk remedies
with the assistance of a tribal elder who indicated that the leaves of a
particular fern were a sure cure for any case of constipation. When the
anthropologist expressed his doubts, the elder looked him in the eye
and said, "Let me tell you, with fronds like these, you don't need enemas."
 
:mellow:  :D 
hey, I don't write em, I just pass em on.
Karen likes silly punny ones and I like to keep her happy.

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#927031 Gluten-Free Eggs

Posted by IrishHeart on 10 August 2014 - 04:18 PM

Well, we may manifest different symptoms yes.....and we may have different challenges, other AI diseases in addition to celiac (diabetes, lupus, thyroid, OA, RA, etc....or other food intolerances,  but here is the part I always wish to point out: we are all alike in this one regard:

 

A smidge of gluten sparks the autoimmune response. In ANY celiac gut. Period.

 

Why does that make us "different"? It doesn't!

 

Does that mean we are all "super sensitive" then? No. This concept means that some may react more violently with more obvious symptoms...like nausea or diarrhea, etc.........but we are ALL in the same boat. 

 

I usually have symptoms shortly after trace CC...they run the gamut from D to cramping, sweating, insomnia, hair loss, joint pain, muscle pain, foggy mind, exhaustion etc.,

but they pass in a week or so. I think I am "very sensitive" to trace gluten as a result --as does my GI doctor. 

 

However...

 

It's just that most of us don't talk incessantly about it, let it rule us, make us paranoid or wonder about things like eggs, toilet paper rolls,

books, the soil a potato is grown in or any other number of bizarre speculative ideas I read on a daily basis on a number of websites.

 

If anyone reads the research about celiac, you will see that the ingestion of gluten causes the EXACT SAME AUTOIMMUNE CASCADE in everyone.  It's not exclusive or special.


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#926627 Gluten-Free Eggs

Posted by IrishHeart on 06 August 2014 - 02:52 PM

Hmmm... This is interesting. I don't react to any eggs but I just wanted to offer support for MJ_S and dilettantesteph.

I understand that we don't want to scare people into eating absolutely nothing, but both of their experiences sound valid to me. While we don't want to post random information on the internet , stories from thoughtful people are paramount to learning. Narratives are so important especially here since not all research has been done!

I appreciate scientific research and use it a ton. However just because their experience has not been proven by science does not mean it's not true.

I think what they are trying to say is please eat eggs, but if you find react, try a gluten free feed egg source . If you do not react to eggs fed gluten free feed, then you can continue to enjoy eggs. Hurrah !!

I'm a big fan of being mindful and paying attention to what makes you feel best :)

 

 

and I will reiterate what I said recently on another seemingly " innocent post" asking about pineapple until it became a giant bag of paranoia.

 

No one is discounting anyone's discomfort from eating eggs. Not at all! :)

 

We all recognize other food intolerances (I have some myself!) and a histamine intolerance.

 

(I could not eat eggs for YEARS)

 

We are saying it is not a gluten issue,. 

 

 

here is what I said on that thread:

Some of us gave simple answers in response. My opinion (for what that is still worth around here after all this time is....)  "probably not, hon. Maybe something else caused your discomfort."

It's pineapple. It's gluten free. I eat it. 

 

Some gave elaborate "what ifs" and other various scenarios...because, well, we may be construed as a "helpful bunch" with lots of stories to tell. LOL

 

And it's now JULY 31, and I kept watching this thread --purely out of curiosity just for this one sole 

purpose....to see if the OP ever comes back to say anything.

 

She has not returned to utter a peep.  And as happens often, by now,  she's probably thinking "I'm fine now, it was just  a bit of gastritis... and I'm sorry I asked". 

 

Just wanted to share my observations.   ^_^

 

 

 

SAME THING HAPPENED HERE.

 

NICE NEW PERSON ASKS ABOUT EGGS....PEOPLE SCARE HER OFF.....SHE HAS NOT COME BACK. :(thiS HAPPENS OFTEN!

 

AND IT BECOMES A PIT OF SPECULATION, ANXIETY AND UNNECESSARY CONCERN.

 

IT'S AN EGG. IT'S GLUTEN FREE. EAT THEM IF YOU TOLERATE THEM. BUT THERE IS NO GLUTEN BEING PASSED FROM THE CHICKEN TO THE EGG........ PERIOD.

 

not A SINGLE SCIENTIFIC SOURCE. NO CELIAC RESEARCHERS SAYING ANYTHING ALARMING ABOUT EGGS AND GLUTEN!!!

 

THIS SHOULD APPEAL TO THE SCIENTISTS IN THE 'GROUP' AND ANY OTHER REASONABLE PERSON READING THIS THREAD.

 

ps. THE CAPS ARE NOT BECAUSE I AM YELLING LOL :D 

 

IT'S TO SET THIS MESSAGE APART FROM MY PREVIOUS ONE ^_^ .

 

PEACE OUT. IH


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