Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Girl Scouts And gluten-free (Not)


Mizzo

Recommended Posts

Mizzo Enthusiast

Hi,

Mostly this will be a rant but feel free to chime in.

We have a day camper Girl scout event coming up 8am till 8pm ( not doing sleepover because DD still bed wets and kids will taunt )

Anyways we NEVER got a call from co-leader who was planning menu so that goes without saying nothing gluten-free there to help me out with and menu was emailed to all parents and items were bought. So I am packing my own cooler.

FYI I had emailed her asking about the menu 4 days before she sent it out but she still did not ask me about food choices. Also found out she never spoke to mom of Peanut allergy child about menu but she managed to make a Peanut free menu anyways.

I emailed the Girl Scout coordinator of event 2 weeks ago asking about any and all food related events being done that day.

The response I got was text book : This was in response to 2 emails I sent asking about food and arts n craft planned.

To the best of our abilities, we have tried to ensure that we are providing an allergy-free environment.

Those girls, like your daughter, who cannot have dough, can just make baked apple slices, which only she will handle. We only have one cooking station to teach cooking skills and it is a snack.

The jelly beans come as a surprise to the group and it would ruin the surprise to bring extras. I


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

I have Boy Scouts but from what I have heard is that these GS people are volunteers and moms. I don't think we should expect lay people to understand or even be able or aware of the proper precautions to keep us safe.

Next year, way ahead of time, when they do the volunteer sign-ups, sign-up. Plan the meals, activities, etc.

My hub & I volunteer for alot of things - Boy Scouts, sports, Robotics club, etc. We try to plan food that works for all but there are so many different medical & religious preferences, it doesn't always work out. Something as serious as Celiac (I have it) or a peanut allergy - where one little crumb can hurt- may be beyond what we can do. Especially in a outdoor type setting.

We see many parents who do not even try to help but demand that this or that should happen. I usually tell them, "That sounds wonderful. You can be in charge of that."

Mizzo Enthusiast

I have Boy Scouts but from what I have heard is that these GS people are volunteers and moms. I don't think we should expect lay people to understand or even be able or aware of the proper precautions to keep us safe.

Next year, way ahead of time, when they do the volunteer sign-ups, sign-up. Plan the meals, activities, etc.

My hub & I volunteer for alot of things - Boy Scouts, sports, Robotics club, etc. We try to plan food that works for all but there are so many different medical & religious preferences, it doesn't always work out. Something as serious as Celiac (I have it) or a peanut allergy - where one little crumb can hurt- may be beyond what we can do. Especially in a outdoor type setting.

We see many parents who do not even try to help but demand that this or that should happen. I usually tell them, "That sounds wonderful. You can be in charge of that."

Normally I would agree except our co-leader in charge of the menu is a NURSE . She should know better. Also, I personally have volunteered and organized a few events and I have even worked with the camp coordinator on a few things in the past. So I think they should of considered calling me when they were making sure everything was peanut and egg free. Something as simple as a brand change would have worked in our favor.

BTW I agree, so I already signed up to be leader next year because 2/3 of our leaders dropped out after 1 year of service, so this will not happen again.

I am also a room parent to a class with 3 different types of allergens and a vegan of which I planned 2 class parties for. I also am a member of the PTO and have provided Allergy friendly food lists for school events as well as volunteer in the school for various projects. I absolutely understand how impossible to be allergy free friendly to all. I just wish they had at least reached out to TRY.

yes, ranting again!!!

Pattymom Newbie

Haven't been on the board in a while, but we are going on out Girl Scout camporee this weekend, and the event planner was not nice or helpful regarding the menu. Unwilling to either work with me, or refund part of the food money. Meals are french toast, mac and cheese, and pizza--argh. So we are taking all our own food. I am actually a Leader of two troops-one older girls with my non-celiace daughter, and a daisy troop with my celiac daughter. Even with our older girl troop we have a dairy free, a vegan, a dye free, a beef free, and a kosher, so meal planning is tough, but we do it-think make your own tacos with bean dip and dairy-free choices, turkey dogs, etc. My daisy troop is gluten free b/c I run it that way,last year we had another gluten free family involved, and it was nice for the girls to share that. Only once did a mom send in a treat for the group that my daughter couldn't have. I think the fact that I am used to helping others and our troop life is set up to work for us, that this even got me so frustrated. it's not that I expected them to totally meet our needs, but they wouldn't even discuss it or try. It's not like she's just picky and I was saying she doesn't like orange juice, you need to get apple. It's a health problem, and it's tough enough to deal with being different without the adults making hard.

Boy scouts for my son has been much better, they are both gluten free as well, and the resident camp program made seperate meals for them, covered in plastic prepared seperately. Plus, they got to go through the normal line, and just ask for the gluten free tray when they were up there, so it felt normal. My older son's troop is also great on regular camp outs-they evn bought him his own pancake mix. He also went to a 3 week chamber music camp that was amazingly good. Even got him gluten free lasagna when that was being served. It's only 32 kids or so a session, but they really went the extra mile.

Of course, that is paid staff, not volunteers like girl scouts.

Still I feel your pain, and I would totally send along jelly beans ( wrap them like a present so it is a surprise for goodness sake). It's not a child's "choice" not to eat jelly beans if they have gluten in them, it's a medical necessity. They used the "it's your choice" line with me about the camporee too. It's not a choice, or believe me, I would totally choose to eat the donuts.

Patty

Juliebove Rising Star

We quit Girl Scouts for this very reason. In my daughter's troop there was another girl with a wheat allergy. Actually this girl had more allergies than my daughter did. But we did not learn of their allergies until towards the end of the year. I wanted to refuse to allow her to sell the cookies because she can't have them. But their solution was that if I didn't want to sell them I could do something else. Like be responsible for the money or store the cookies or... Basically something to do with the cookies. I was very happy when she decided to throw herself into dance the following year so there was no time for the Girl Scouts.

Jennaand2kids Newbie

MIZZO - I am not 100% sure if my 3 year old has celiac or not cause they are telling me they need a biopsy this week. But if he is he cant even play with macaroni at school? i didnt know all these things till i read your forum!

Juliebove Rising Star

MIZZO - I am not 100% sure if my 3 year old has celiac or not cause they are telling me they need a biopsy this week. But if he is he cant even play with macaroni at school? i didnt know all these things till i read your forum!

Correct. Or Playdough.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jennaand2kids Newbie

but WHY????? I dont get it.... what does play dough do?

kareng Grand Master

but WHY????? I dont get it.... what does play dough do?

Some types of Play Dough are made with wheat flour. Even if your kids son't eat the macaroni or Play Dough on purose, it's all over their fingers. They might forget & chew on a finger or not get all the dough out from under their fingernails and then eat lunch.

kareng Grand Master

This is from Hasbro's website

Play-Doh

anabananakins Explorer

I'm a Brownie leader (the girls are 7-10). When I first started, before I went gluten free, I have to admit that it totally freaked me out to have girls with nut allergies in our group. I was terrified something would happen, though we were very careful to check labels, I really didn't know how careful to be. In retrospect, I should've sat down with the parents and asked all my questions, but it's so hard to find the time and I let it just be something I worried about but didn't action.

I totally understand your ranting. She should've contacted you. But being a nurse won't make her more knowledgable - we've all had such problems with doctors! One that thing really bugs me about being a leader is lack of communication from parents. They act like I'm paid and putting on a babysitting service for them, whereas it's supposed to be a community thing, with parents actively involved (not saying you're not - now I'm just ranting!). We don't get paid and the planning is a huge amount of work. Which is fine, it's worth it for the girls but I hate it when parents don't talk to me about any issues they are having or concerns that they might have. We did a "monk's dinner" night recently; the girls love it but it's super stressful to me having all that spaghetti around. Because I'm concsious that I have to look after myself, I questioned carefully the parents of the new girls to make sure that spaghetti and sauce were fine for them to eat. One father (his daughter has attended twice already) said yeah fine but I questioned him again about anything I should know and he said 'oh yeah, she's allergic to nuts'. OMFG, could you have not told me that before?? How allergic, how careful do we have to be? Does she need an epipen? I always have snacks of nuts in my bag, could I contaminate her? We've had a few years of me being the only one with food issues and that's fine, I'm an adult and can take responsibility for myself, but I'll be going back to being super strict about the food the girls bring to share. When I checked the ingredients later that night, I realised it had a 'may contain traces of nuts" warning on the spaghetti sauce. I wouldn't have eaten it if was a "may contain" warning for wheat, should she have eaten it? Her father didn't ask to check and I had the jars right there.

And I get to experience it myself when I go on training courses. I have one coming up, a whole weekend. I rang to ask to speak to whoever is doing the catering because I'm concerned about cross contamination... we'll see if they call me back.

I think you're doing the right thing to get more involved. It's hard work being a leader, but very rewarding. And at least you're get to have more control over things like that. I love seeing the parents more involved. I don't have kids myself but it's so much better if parents are involved, it's great seeing them interact with their children within a different dynamic.

Juliebove Rising Star

but WHY????? I dont get it.... what does play dough do?

It has wheat in it. Kids will use this stuff and stick their fingers in their mouth or touch their eyes or nose and gluten themselves. And some people also get contact reactions.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    VanessaC
    Newest Member
    VanessaC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.