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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Hello Again!
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6 posts in this topic

Hi again everyone. Well we've had yet another move, arrived here about 3 weeks ago but have very limited internet access at the moment.  The internet is not yet connected at my house.  In fact, we don't even have water other than tank water! So I'm using the computer at my dad's house.

 

We made it down, school went back for the year last week and my daughter has made a few friends and will be going on the upcoming school camp.  I'm not concerned about them catering to her gluten free diet because one of the staff members going is also coeliac, I'm just not sure if they'll get the whole vegan thing right.  They seem ok, but the camp provides the food, not the school.  It looks like a fun camp though.

 

So we now live in Victoria and have many adventures ahead of us.  We're going camping up Mount Franklin (where the Mt Franklin water comes from) and we have the Events Calendar with loads of activities that we'll partake in.  There are a lot of gluten free vegan options here, so much more than expected so even though I do pack an esky, most times we don't need to eat what's in it.

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sounds like  you & yours  are on a adventure....My only  comment is: just  because  one  staff member  has  celiac  does  not  mean  they  will  cater  to  your  child , many  think  it  is  the  responsibility of the parents    to  insure  a  game  plan for their  child  is in place... Another thought  comes to mind! The  person  that is  celiac, do you know  this  person on a personal  level? If  not, then how  do you know they  are strict  to  the  celiac  lifestyle? You  do know  there  are  tons  of  people  who are  dx's  celiac  , understand  what  needs  to be  done to maintain health  but  just  can't  get  around  to  being  strictly gluten-free, they  just  don't  do it. They play  Russian  roulette  with their  own personal  health...

 

Sorry  this  is  a  negative  post  but I  would  hate for  you  to put  trust  someplace/someone  where  it may  come  back & bite  you in  the  end....for me  I  would  secure a plan for  my  well being. Even  at  best  that also  does  not always work  either.......

Hope  the  experience  is a great one....

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Welcome Back!

 

Glad to hear an upbeat report after the move :)

 

Wishing you and your daughter well on your upcoming adventures :D

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Glad to hear from you!

 

I am sending you warm wishes for a great camp!  Hope for the best, but be prepared for the worst is my motto for sending the kids anywhere.  I have to say I have been pleasantly surprised that more people are getting informed for food stuffs.  (I usually send an extra foot locker of food.  There are some shelf stable microwave meals and breakfast cereals, snack bars, and I bake some stuff to send too.)

 

One of these days I would like to visit your side of the world.

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That staff member is very strict with being on a gluten free diet and the place the camp is at caters to all dietary needs and have never got it wrong in the years they've been doing it, with hundreds and hundreds of kids passing through every year so I'm not really worried about it from that angle :)

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That  is  good  that  you can trust  the  camp. I just  brought  it up  as  I  didn't  remember you stating that in your  original post...it's  good to  get  all the  angles covered......

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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      I have not. I'll talk to my doctor about it
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