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Member Since 11 Mar 2010
Offline Last Active Jul 29 2014 03:55 PM

Posts I've Made

In Topic: Options / Opinions ?

26 July 2014 - 07:19 PM

There are apps to help you find gluten-free friendly places to eat.  Find Me Gluten Free is a popular one.  I've used it when we travel.

In Topic: As An Adult, Can I 'outgrow' Ncgs?

27 June 2014 - 05:55 PM

I've never heard about people outgrowing NCGS. I have my doubts that one would outgrow it but that is completely a guess.


I do know that some cases of NCGS "become" celiac disease according to some studies.  My guess is that in those cases those people already had celiac disease but became sicker so it was finally measurable... Not ideal.


I would be careful about reintroducing gluten into your diet. You could be a celiac and not know it. NCGS and celiac disease symptoms are virtually the same. Some people feel sicker than others, some have neurologic symptoms whereas others get joint pain and others still have digestive problems.  There are those with NCGS who have more severe immediate symptoms to gluten than I have, but I also have lingering joint and thyroid issues that I'm guessing  celiac kicked off after years of no treatment.  I would consider the gluten-free diet as a better safe than sorry diet.   ;)


If you do start eating gluten without serious symptoms, you might as well get tested for celiac disease after a few months - just to be on the safe side.

Thank you.  I suspect you are correct.  Sometimes I get a bit cranky and wishful, wanting to not have to deal with this.  However, being gluten free is a far easier burden than many other treatments other illnesses require.  I need to remind myself that everyone has a 'wierdness' of some sort or other.  NCGS is mine.  One of mine, anyway.

In Topic: Help Please!

25 June 2014 - 02:16 PM

I like Better Than Bouillon, usually buy the organically sourced version.  It's lower sodium than bouillon cubes, tastes better,  The ingredients in the Organic Better than Bouillon chicken base are: chicken meat with natural juices, salt, cane juice solids, maltodextrin, flavoring, yeast extract, potato starch, turmeric, natural flavor*.  (all organic)   


Per the website, http://www.bettertha...on.com/faq.aspx

Is Better than Bouillon gluten free?

Many of our bases could be considered gluten free, but since we do not test specifically for gluten at this time, we are unable to make claims regarding the gluten content in each of the bases. However, I can help you if you have a question about one of the ingredients and where it is derived from so that you can make a personal decision about whether or not you can eat the product.

*  Per their website:  What are natural flavors in BTB?

Chicken Base — Onion Powder, Extractive of Celery & black pepper.)



The website also stated that they will list the source for ingredients, such as maltodextrin from corn .  


Anyway, I hope this is helpful! 

In Topic: Medical Records

24 June 2014 - 06:06 PM

See, I don't know what to think about all this school stuff.  We are fine sending lunch to school with her, we aren't worried about that.  Would I have to go through all that just to have a note sent home about the treats?  I am going to take some frozen snacks for her to have on hand, but I know it's nice and means an awful lot to her when parents go the extra mile and make sure they send something for her.  My daughter was overjoyed when one of her friends mom sent a gluten free prepackaged treat for her.  I was too.  That was the point I was trying to make to the school, I know most parents aren't going to remember but it's the few that do that count.

Is your daughter old enough to know to avoid gluten containing food, and to know which foods are problems?  Not to share food with other kids?  If you can work only with the teacher, that could be enough, especially since the nurse and the administration have essentially said 'not my problem'.  If the teacher is willing, keep a supply of safe snacks for your daughter at school for classroom parties, as you mentioned.  Probably the only reason to deal further with admin would be if she needs a gluten free table at lunch, or other such accomodations.  


How lovely that the friend's mom sent a gluten-free treat for you daughter!  That's the sort of support you and she need.  

In Topic: Medical Records

24 June 2014 - 07:02 AM

I live in NY state.  I have talked with the superintendent of schools as well as disability lawyers.  The way they do it in my district is that you must sign permission for the district doctor to talk to your child's doctor to obtain a 504.  Then the district doctor and administrators decide on what accomodations need to be made.  The principal and school physician didn't even think that a crumb free work area was necessary.  I had to push hard for my son to not be required to have lunch in the cafeteria, which was making him sick.  My son's doctor has had problems with getting instructions misinterpreted in the past.  In fact, she said that this particular school physician has said that she had said outradgeous things.   If you disagree with the accomodations that have been determined there is a formal process to go through.  All this takes many months. 


I know someone who went through problems with 504 accomodations in California with a high functioning autistic child.  He recorded all the school meetings, and kept records of all transactions.  In the end his child is in a private school and the district had to pay some of the cost after he took them to court.


I think that school districts don't feel like they have the necessary funding to do what is needed.  The system is set up in a way that assumes that the district is acting to serve the student.  I am glad to read that the majority of students seem to be well accomodated.  I hope that my school district makes some improvements.

I'm so sorry that your son's health has to be compromised because of bureacratic nonsense.  I hope this can be worked out for his best well being.  Sounds like that district physician needs to be replaced with someone who has some real medical knowledge and compassion for the health of the children.