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dilettantesteph last won the day on December 30 2018

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  1. 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. 

  2. I'm sorry you got sick.  It is really hard to tell what is causing a reaction, especially at first.  Personally, I like removing as many possibilities as I can so that I can more easily know what the problem is.  One thing that you could do is to put the melon in  deep bowl and put the stretch tite over that so that it doesn't touch the melon.  I hope that you feel better soon.

  3. I should have put this in my first post, but my mind wasn't working very well then.  My experience with supplements was that my health improved significantly when I cut them all out.  I was taking quite a few and likely, in my opinion, something was gluten contaminated.  I am very sensitive so that my experience would not apply to the vast majority of celiacs.  Since you having ongoing problems, you may not be in the vast majority of celiacs as well.  I researched how to get nutrients from food.  There were a few things that I couldn't get from my food, so I added those things back in supplement form one at a time so that I'd be able to tell if anything bothered me.  Right now I'm taking iodine, a probiotic, and a digestive enzyme.  The later is from a gluten-free certified facility.


    I still agree with Kareng that supplements are not necessarily the most likely issue and that you should look in other places too. 


    I apologize for the bickering.  Also, sorry about some spelling errors earlier.  I don't seem to be able to edit anymore, or I'd fix them.

  4. I'm not sure about in Australia, but here in the U.S. you can often get journal articles from your local library.  You need to special order them but they get you copies in a few days.  You can also go to the local university library and get access there sometimes.  I agree that it can be a challenge.  Not only is it a challenge to read them and understand them, but it is a big challenge to gain access without high fees.  It would be so nice if our medical professionals could be better at reading them for us, but I think that there is just so much information out there these days that it is hard to keep up, especially for a doctor that treats many conditions.  I am so pleased when I go to discuss recent research with my doctor and find that she has already read it.  She's a keeper.

  5. Actually, he put this thread somewhere else.  But, because he was talking about soy, not gluten, it was moved to this section "other intolerances".  It might be confusing,as this is a Celiac forum and many of us read  thread titles & access the thread/topic from the "new content" section and don't notice the "topic" title.


    Oh, good.  Sorry I didn't notice.


    In case anyone is interested, there are eggs available from soy free chickens.  Just soy free eggs online.  I have no idea if it is really an issue.

  6. I got diagnosed with Sjogren's syndrome recently.  The reason I went to the eye doctor was that I had blurred vision and I was afraid that I was losing my eyesight.  She said that we tear up more with dry eyes and that was what caused the blurring.  At that time I was suffering from a relatively long term accidental gluten ingestion period.  Later, when I got my diet under control again, the symptoms went away.  I hadn't started taking the prescribed medication yet because I was waiting to get over the glutening first.  I don't like adding anything when I am glutened because then I might not notice if it causes problems.  I ended up not taking it since the symptoms went away on their own.  Since then I do notice them coming back again if I have a long accidental gluten ingestion period.

  7. A study showing that grains can be contaminated: https://www.glutenfreewatchdog.org/blog/Naturally-Gluten-Free-Grains-and-Gluten-Contamination/6

    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."

  8. I think that the doctor assumed that it was the supplements because a study has come out recently about contamination of supplements: http://www.biomedcentral.com/1741-7015/11/222


    I don't know if that means that the most likely source in your diet would be the supplements.  It would a good idea to also look elsewhere as Kareng suggested.  Also try to look for a pattern with what you eat and when you get your symptoms.  A food/symptom journal can be helpful fo this.


    I hope that you feel better soon.

  9. A special diet was developed for celiacs with ongoing symptoms that you could discuss with your doctors.  You can find it here: http://www.biomedcentral.com/1471-230X/13/40


    It can apply to children and you can read the story of a 9 year old girl who went on this diet here: http://www.celiaccentral.org/kids/stories/celiac-girl-a-blog-by-9-year-old-alexis-c/meet-celiac-girl-alexis-c/


    I wish that we could get an updated story.  I hope that you child feels better soon.

  10. StephanieL, let me apologize to you again.  I had my daughter read the thread and she explained how it sounded.  You know how something that you have in your head can sound different when it is written down?  I thought that the OP could approach the school better if she had a good understanding of the reasons for the policy.  I know very well that some children with allergies need food from facilities where the allergen is not processed.  That wasn't the evidence that I was wondering about.  Kids sharing their food hadn't occurred to me as my children's schools have had a no sharing food policy for some time.  I thought that this issue was airborne nut particles coming from food being processed in a shared facility and that sounded far fetched.  I did not mean to question your child's need for food processed in allergen free facilities.  I did not mean to diminish the possible danger to your child that could be caused by eating a small amount of allergen. 

  11. 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.


    I am very sorry if I caused you any pain.  I honestly was looking for some evidence for food from a nut free facility being necessary for even being the presence of a child with a nut allergy.


    I guess I am little bothered by this stuff because my son's school won't allow latex balloons in the school at all due to a latex allergy.  At the same time, they will not even provide a crumb free desk for him.  It really doesn't make any sense.


    OMG...this one nearly had me choking on some fruit I was eating!!!! 


    As there is no legitimate source on the subject of super sensitivity, and we now have a whole section devoted to a subject that is not recognized by any legitimate Celiac organization or doctor, do you want to explain to me why you answered StephanieL in the manner you did, when she actually had some really good suggestions, based on expert experience on the subject, to offer?  This coming from someone who thinks you can be glutened from melons or that there is gluten in soil which can uptake into food that is being grown?  :blink:  Oh, my....that is priceless...... :lol: ...and just my opinion, of course!  ;)


    I don't know where you get these ideas Gemini.

  13. 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.


    Exactly, and it is because of moderators response to thit that I have reread the board rules and I am very careful to provide evidence for what I say, or to state it as experience or opinion.