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IrishHeart last won the day on November 19 2015

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About IrishHeart

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  1. Well, if you read the article, it states " new research suggests these folks may also react to non-gluten wheat proteins."


    So, it is also all the OTHER proteins in WHEAT   that trigger our symptoms. It's not any additional foods, it's nothing new for those of us with celiac because  it's still wheat we shouldn't be eating.  


    It's bigger news for non-celiacs because :

    Now several studies hint that so-called gluten sensitivity might not always be caused by gluten. In some cases, the problem may be entirely different proteins—or even some carbohydrates. “We're so used to dealing with gluten as the enemy, but it might actually be something else,” says David Sanders, who teaches gastroenterology at the University of Sheffield in England. Joseph Murray, a gastroenterologist at the Mayo Clinic in Rochester, Minn., agrees: “I'm starting to feel more uncomfortable calling it nonceliac gluten sensitivity. I think it might be better to call it nonceliac wheat sensitivity.”

    In laboratory tests, wheat proteins known as amylase-trypsin inhibitors have stimulated immune cells in plastic wells to release inflammatory molecules called cytokines that can overexcite the immune system. In laboratory tests, wheat proteins known as amylase-trypsin inhibitors have stimulated immune cells in plastic wells to release inflammatory molecules called cytokines that can overexcite the immune system. 

  2. I suggested using flour because most people already have G F flour in the house for baking pies and rolls. It probably won't be much of an added expense. 


    A bit of flour and butter whisked into a roux is then added to the hot drippings and hot stock and honestly, that has never caused any clumping in the gravy I have made for over 30 years. ( all -purpose G F Flour now or Gold Medal back in the day) 


    But, all cooks have their preferences.  ^_^

  3.  I recognise that our daughter's allergic/celiac reaction could have been to any ingredient in that plastic.


    Good. I am glad you recognize that fact because 

    not everything that happens to us, our children and families is because of gluten.


    Having OTHER allergies/intolerances  opens a door to so many other things that may have caused a "reaction".


    I know, I have other food intolerances and mast cell issues. 


    I am sorry your wee one is not feeling well, but the science speaks volumes. And Dilettantesteph would be the first to agree that the science is important. 

  4. 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/Centers-and-Departments/Departments/Digestive-Disease-Center/Celiac-Center/FAQ/DiagnosingCeliacDisease.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."



    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. ^_^

  5. I take a few G F supplements and my recent follow up biopsy showed no active celiac (just some scaring from years of going unDXed)


    The blanket statement 'supplements can contain gluten"  may not apply, since the doctor has no knowledge of what you are taking--has he checked the brands, etc?


    If you selected G F supps, there should be no problem. If you are worried about it, use certified G F ones, like Country Life.


    Changes in the duodenum can occur for many reasons other than gluten exposure. Only a biopsy would tell the doc if the villi are damaged.


    The pill cam is a good way to start looking at the entire tract, but if i were you, I would do as Karen suggests above. 


    Good luck. Let us know how you make out!

  6. The comments from Irishheart make realize that I need to work harder to be more clear.  I gave the references to those studies because I thought the OP might want to read them because they are relevant to her question to me asking if I cut grains from my diet to heal.


    Actually, no.. I thought you were pretty clear.  That's not why you posted them originally.. You posted them to refute a statement Gemini made earlier in the thread.

    I say this because you quoted her before answering with those study links (why else would you post them directly after her comment?). 


    And anyone reading the thread knows that you quoted Gemini's sentence because they saw it. Now, you are changing what you are saying was your intention because I raised some points that show the studies did not really support your attempt to  refute her comment.


    You have since come back and edited that part out. 


    but I have the email notice right here:

    dilettantesteph  has just posted a reply to a topic that 
    you have subscribed to titled "How Did You Heal Your Gut?  
    Besides Giving Up Gluten...".
    ------------ QUOTE ----------
    There is no proof that cutting out all grains will help a person heal faster. 
    A study showing that grains can be contaminated: 
    Gluten-Contamination/6 (https://www.glutenfreewatchdog.org/blog/Naturally-
    A study showing celiacs continuing to experience symptoms when they 
    were on a special diet: http://www.biomedcentral.com/1471-230X/13/40
    They do allow rice.
    "All cereal grains aside from rice are prohibited."


    I would not have posted a lengthy response to you for no reason. That would make no sense and I would not waste my time or the reader's time.   


    A study showing celiacs continuing to experience symptoms when they were on a special diet: http://www.biomedcentral.com/1471-230X/13/40

    They do allow rice.

    "All cereal grains aside from rice are prohibited."



    yes, however, after the trial of that "Fasano diet" as it is now dubbed, the conclusion was 


    "Of the 14 patients who responded to the diet, 11 (79%) successfully returned to their previous traditional GFD without resurgence of symptoms or elevated serology."


    Eating mass-market  G F grains. 


    Even the leading celiac researchers think it's okay to eat rice. The people in the study did not cut out grains and they still healed their gut linings, so I am sorry but I honestly do not see why you use these two small studies as refutation of the statement gemini made.

  8. Tricia Thompson RD  (whom I have conversed with via email) and Anne Lee, RD who I had the pleasure of meeting and talking with for over an hour at a Gluten Free Living conference inOrlando last spring co-authored that article and I specifically asked Ms. Lee about this study. She had presented a lecture earlier that day about the need for incorporating grains into the G F diet because she knows their nutritional importance.


    She stressed that certified G F grains are not the problem.


    Let's look at the conclusion of the study:



    We concluded that “the findings of the current study indicate that some inherently gluten-free grains, seeds, and flours not labeled gluten-free are contaminated with gluten. This potential risk of contamination is a health concern for people with celiac disease, who must follow a gluten-free diet. The consumption of these products can lead to inadvertent gluten intake.”


    1) some inherently G F grains, seeds and flours


    3) "potential" risk



    In other words, just to be safe, celiacs may wish to avoid THOSE not labeled G F......and eat  grains for their nutritional value. 


    The vast majority of celiacs can and do heal their gut lining while eating G F grains. 

  9. No, the question was about artificial flavorings and you kept giving me information about natural flavors...I kept trying to point that out to you and you kept posting the same link to the same blog that had no information about what I was talking about...so, do I just ignore that list from this site because you say it's ok? I'm trying to trust you but when your information is contradictory, it's hard.


    Actually,  the article covered "flavorings"--including natural flavors, smoke flavors and caramel coloring


    I think we mentioned to you that  "artificial flavors" were not an issue (because why would any product need artificial wheat flavor?) and if it even somehow had it, the ingredient would have to be listed.


    I'm sorry you feel as if this is overwhelming, but hon, you sounds as if are really making this harder on yourself than it has to be. 


    Wheat, rye, barley, Oats, malt.  That's it. If it has oats and it does not say "certified G F oats"--skip it. 

  10. Actually, your ribbing of my food comments prompted this question.  You made me feel like I was being way too conservative so I thought I would ask....and, like I said before, until I have the 'safe" list memorized, what else am I supposed to do---just eat whatever and hope for the best...not to mention the conflicting information out there....and here....


    Then, just read the "real" info. You consistently say the "old timers" are not helping you or are not nice to you on here, hon. This grieves me because that's just not true. You were openly rude to me a while ago on the dinner chat thread and I still do not know why. We ARE helping you. The other day for example, you questioned "caramel coloring"..we already told you, it's not a concern in the US,


    A commonly used waffle maker in a hotel? not a good idea. That's just common sense. You cannot avoid CC on things that are shared with wheat flour.


    There's nothing much to "memorize" and if you choose to read stuff "out there" (wherever that may be??)

    Understand this:

    the internet (and yes, even some threads on here!) can be full of bogus information.


    Read the book Real Life with Celiac Disease by Melinda Dennis and Danilel Leffler for great information.


    and quite honestly, learn to trust some of the long time people on here who are giving you the facts. We're not the bad guys you seem to think we are. And I am not sure why you feel this way about us. :(



    A great resource is Tricia Thompson.



  11.  The OP has been back and it looks like the school may not understand thier own rule. Or a lawyer told them to make it. Or....... Just more guessing.

    I think the general consensus is that the "no food processed in facility rule" in a kids lunch will be impossible to police and may not be necessary.


    yes,  yes!, and hell yes. because that's a lawyer's job.


    I have read the 86- page Massachusetts law about food allergens in schools, BTW and it is very complex.


    I hardly think the "no food processed in a facility rule" is really what the school policy even "intended".


    That's just not possible, since kiddos bring lunches from home.


    To the OP: please, I urge you to go back and ask the pertinent question because I wonder: Did you mean to say this?


    He is not allowed to bring anything that is made in a facility that uses peanuts, tree nuts or sesame (and technically, that includes my home kitchen). This eliminates almost every packaged food that is safe for him


    especially since you said:


    The school kitchen that the teachers use actually has nuts and peanut butter in it.


    Do you know this for a fact? Because then, the policy makes no sense whatsoever!!. And why would the parents be asked to adhere to the rule if this is the case? This seems contradictory.


    Go back to the school and get clarification. IN MY OPINION.