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

Communicating With Camp Director


Minette

Recommended Posts

Minette Contributor

My 6-year-old Sarah went gluten-free on Saturday (celiac diagnosis finally confirmed!), so we're now on day 3. I had previously mentioned to the camp director that she would be gluten-free at some point, and the director was very understanding, said she had other gluten-free kids in camp (I don't know if they have celiac), not a problem, etc. She has said all the right things.

However -- I sent her an email last night explicitly stating that Sarah was not to have any food other than what she brought from home. There is one exception, and that's if it's a snack that is labeled gluten-free and is in an individually wrapped package. I was very clear about this, and I was also very clear about it with the counselors that I talked to this morning (not the director).

This afternoon at pickup Sarah told me that they gave her gummi snacks (wrapped) and jello (in single-serving bowls, but not wrapped). Each child only touched their own bowl. However, someone had to serve that jello, and they probably washed their hands, but obviously I can't know this for sure.

I'm not so much worried about the jello itself, as about the fact that on the very first day of being celiac at camp, the director didn't follow my instructions. She probably figured she has other gluten-free kids and this is how they always do it. And the truth is that they are probably very careful. (It's a YMCA camp and i've been really impressed with them so far.) How do I handle this?


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

You have left it to thier judgement to decide if something is safe for your child. If that doesn't work for you (& it probably doesn't), then tell them not to give her anything you don't send her with. Gluten free or not. Its really all or nothing. It will be less confusing for the child to know not to accept anything, too.

Mizzo Enthusiast

I would be very worried and would hand them my phone number on a card and tell them to call before straying from your request. Thats very concerning

Minette Contributor

You have left it to thier judgement to decide if something is safe for your child. If that doesn't work for you (& it probably doesn't), then tell them not to give her anything you don't send her with. Gluten free or not. Its really all or nothing. It will be less confusing for the child to know not to accept anything, too.

That's kind of where I was leaning, too. I just feel bad for her because they do popsicles a lot, and it's one of her favorite "fun camp things." I was hoping I could still let her have that.

I could bring a box of popsicles to keep in the freezer, I guess.

kareng Grand Master

That's kind of where I was leaning, too. I just feel bad for her because they do popsicles a lot, and it's one of her favorite "fun camp things." I was hoping I could still let her have that.

I could bring a box of popsicles to keep in the freezer, I guess.

Popsicles are probably fine. Find out what kind they have. But be specific what the exceptions are. Only 1 or 2. It's magnified the number of kids there.

Because she's so young and new to this, I would say nothing you don't send. Send a box of Popsicles for her.

Mom2J112903 Newbie

I ALWAYS sent EVERYTHING my son would need if there would be any type of food OR drink needed for the day. Hands were washed before touching his foods and I had no worries about him being served something he shouldn't injest.

Minette Contributor

So, I told the camp director not to give her anything other than what we send. The very next day, someone gave her an applesauce. It was a single-serving in a sealed container and I'm sure it was fine, but still. The director was very apologetic and said it wouldn't happen again, which so far it hasn't.

I did make one exception -- they were supposed to go out for ice cream yesterday. I said she could have mint chocolate chip in a cup, that the staff should double-check with the server that it is gluten-free, and the server needed to wash the scoop before serving. I think it would all have gone fine, but they canceled the outing anyway (too much smoke in the air -- we live in CO, though not where the really big fires are) so I don't know for sure.

The director went out and bought vanilla ice cream and brought it back to camp instead -- Sarah had that, but wasn't allowed to have the fresh fruit for topping. She was pretty sad about that. She also had to skip the popcorn snack the next day. :(

I'm so conflicted about this because I know they really are careful and it would probably be fine if I let them give her food. It's just that we're so early in the process, the gluten probably isn't even out of her system yet and we have no way to tell if she's gotten any by accident. I know it's better safe than sorry, but it's hard for her to understand.


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



Celiac.com Sponsor (A8-M):



Cara in Boston Enthusiast

Ask the director to contact the other gluten-free parents. She probably can't give you their email addresses, but she can give yours to them. They would probably have some good advice and insights for you. I know the one other gluten-free parent at my son's school asked me to contact her so she could find out how I handle field trips, classroom parties, etc. We now share a box of popsicles and frozen gluten-free cupcakes in the teacher's lounge freezer. The school also placed the kids in the same class (last year) and will continue to keep them together when possible. It is very helpful that the teacher can contact either parent if there are questions about an event or activity.

Don't forget camp crafts . . . play dough and papier mache . . .

Cara

Skylark Collaborator

I did make one exception -- they were supposed to go out for ice cream yesterday. I said she could have mint chocolate chip in a cup, that the staff should double-check with the server that it is gluten-free, and the server needed to wash the scoop before serving. I think it would all have gone fine, but they canceled the outing anyway (too much smoke in the air -- we live in CO, though not where the really big fires are) so I don't know for sure.

The director went out and bought vanilla ice cream and brought it back to camp instead -- Sarah had that, but wasn't allowed to have the fresh fruit for topping. She was pretty sad about that. She also had to skip the popcorn snack the next day. :(

Gah. I worked in an ice cream parlor. Fragments of ice cream cone can snap off the edge of the cones and fall into the tubs. There are also often gluten-containing flavors like cookies and creme and you have no way of knowing whether they are consistently cleaning the scoop between flavors (probably not). Add the gluten sundae toppings like crushed oreos which can be dished out over the tubs of ice cream and you have a lot of potential for CC.

I think you are really new to this and it sounds like you need to get more comfortable assessing what is and isn't safe for your daughter. I think the camp director is doing a great job, especially if she understands the risks of ice cream parlors. She actually sounds pretty amazing.

I would have eaten the fresh fruit, after asking if they had cut it on a clean cutting board with a clean knife. I wouldn't be worried about Jell-o if it was the only thing served. I can see issues if they were handing out cookies at the same time and potentially getting crumbs into the Jello. I wouldn't worry about eating a Popsicle that was gluten-free if someone handed it to me by the stick. In contrast I only eat gluten-free soft serve at ice cream stores because I'm reasonably certain it won't get crumbs in it or CC'd.

Minette Contributor

Gah. I worked in an ice cream parlor. Fragments of ice cream cone can snap off the edge of the cones and fall into the tubs. There are also often gluten-containing flavors like cookies and creme and you have no way of knowing whether they are consistently cleaning the scoop between flavors (probably not). Add the gluten sundae toppings like crushed oreos which can be dished out over the tubs of ice cream and you have a lot of potential for CC.

I think you are really new to this and it sounds like you need to get more comfortable assessing what is and isn't safe for your daughter. I think the camp director is doing a great job, especially if she understands the risks of ice cream parlors. She actually sounds pretty amazing.

I would have eaten the fresh fruit, after asking if they had cut it on a clean cutting board with a clean knife. I wouldn't be worried about Jell-o if it was the only thing served. I can see issues if they were handing out cookies at the same time and potentially getting crumbs into the Jello. I wouldn't worry about eating a Popsicle that was gluten-free if someone handed it to me by the stick. In contrast I only eat gluten-free soft serve at ice cream stores because I'm reasonably certain it won't get crumbs in it or CC'd.

I agree about the fruit and jello -- if I'd been there and could have seen or asked how they prepared it, I would have said ok. It's just that I wasn't there and I didn't know, AND I had told them not to give her any food.

But I'm hoping to be able to talk to the parents of the other gluten-free kids -- if they are comfortable with the way the camp is handling it, I'd quite willing to leave it up to them. They do seem to be really aware of the issues.

Incidentally, we went out for ice cream today (just the family, not with camp). We had rehearsed what we'd need to say to the server, but my husband never got beyond "My daughter has celiac disease" when the server just said "Oh, OK" and headed off to the sink to wash the scoop with soap and water. She had mango sorbet, which is in a separate case with the gelatos, so I think there's slightly less risk of random stuff falling in. But we did look at it carefully to see if there were crumbs or anything. Anyway, so far at least, she hasn't seemed to react to it.

Skylark Collaborator

I hope you can get a chance to talk to the other parents. One of the hardest things about starting the diet is getting perspective and I think they can probably help you. (Folks on the board can too!)

It's hard to know when the risks of CC are small, when they are big, and what will be low enough gluten to keep your daughter healthy. Gluten tolerance is widely variable, just to add to the confusion. There are also times when it's worth risking a little CC (like the ice cream parlor) in order to maintain a sense of normalcy. This diet can be so tricky. :blink:

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 lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.