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Boy Scouts / Girl Scouts Camping
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Does anyone have Celiac kids in Boy Scouts or Girl Scouts? How do you handle camping and big events? What do you bring with you to make food prep easier and safe? Do you try to have the whole troop have safe gluten-free food? How much detail do you give when you explain you child's food issues with the kids and parents?

My child is a Celiac and is careful about being gluten-free. However, she doesn't want to explain the details of Celiac disease with everyone especially kids/parents who will just be rude or insensitive.

Thanks for your help.

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My daughter is a girl scout.  For S'mores, I send her own graham crackers.  For burgers & dogs, I send a bun and usually there are chips/fruits/veggies she can eat but I usually have an extra stash just in case.  We had a planned overnight this past summer at her summer day camp and although it got cancelled due to a widespread stomach virus, I contacted the staff ahead of time to find out what was on the dinner menu.  I had planned to send her with a similar meal.  We were lucky that this camp had a kitchen in the main shelter so it could be refrigerated and microwaved.  I so want her to do a full week sleep-away camp one of these years because I have such fond memories of it as a kid but that SCARES me food wise. 

 

BTW... our troop doesn't sell cookies until the winter but my friend's daughter is selling now and they have a gluten-free chocolate chip cookie as a pilot program.  YAY!  I'm hoping we have the same. 

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Ahhh Girl scouts :  the parent volunteer run program 

 

I have had mixed responses with this. Our passed troop leader did little to nothing to accommodate a  gluten-free or mostly gluten-free environment for the troop mtgs or day events. New leaders this year so we will see.

 

On the camping events and overnighters we have had really exceptional  help in insuring a safe food environment. We got lucky the day camp had a nurse with a Ceiiac child  and the overnighter food events was run by a woman with gluten intolerance who actually brought her own pots pans etc.. in for herself and the kids.

 

It really is how the leaders receive and react. You have no control over it. On one daycamp BBQ event  I sent  everything except drink and bagged chips. It included Hot dogs wrapped in foil , bun ,sides , a smores baggie with her own toasting stick  etc...      on another overnighter event i sent a smore's pack and a backup snack bag.       Situation's vary depending on the volunteers.

 

Call and speak to whoever is in charge in advance.

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Great suggestions.  I agree, it's all about the volunteers.  We have a scout who is allergic to peanuts/nuts/milk and some vegetarians.  We have accommodated them all since they were Brownies (Cadettes now).  My daughter does not have celiac disease but  I do.  I attended campouts/jamborees and I would worry about the dish cleaning procedure too.  Your daughter should always be first in line to use the dunk bag system.  She should always be served first if she is sharing any safe food and you should go over food prep procedures with your leader.  

 

If I were you, I'd attend the camping trips for a while.  Talk to your leader about taking a Volunteer Essentials class and become a scout.  You may or may not need to take a camping class (at least one of the adults in the class should take this).  

 

It's fun and our troop loves to camp.  I used to go all the time, but have backed away (the girls can do so much more at the Cadette level).  I have not camped with the troop since my dx, but prior to that I had to bring my own food due to my food allergies.   We do bring snacks to meetings always it's peanut/nut/meat and dairy free.  And when it's our turn, we make it gluten-free too!   

 

Like the others have said, it's up to the volunteers.  Hopefully, they really believe in the Girl Scout Promise and Law!  If push comes to shove, start your own troop or find another.  It's a great way to meet different girls from different schools.  

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We have a fantastic leader who does everything she can to make things safe. It helped so much when another boy in our scout den was diagnosed. They have each other and just knowing another kid who has it is so great for both of them. His mother and I make gluten-free snacks and work to keep them safe. We have a sleepover at a museum next month and I just called and talked to them and they are allowing us to bring our own dinner and giving us access to their kitchen to put it in the fridge and heat it in the microwave. My son went to scout can't (day camp) this summer and whenever they had food relatd things, they called me and we came up with substitutes. They also bought gluten-free snacks for him if they bought snacks for the campers.

In all honesty, we have been so so so lucky in our lives with the people we have come into contact with.

:)

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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