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

My 13 Year-old Daughter Is Going On Outward Bound ...

arkant

Recommended Posts

arkant Newbie
arkant
Posted

My daughter choose to go on an Outward Bound backpacking trip this summer. From the beginning I asked them if they could accommodate a gluten free child, and they insisted it was no problem. They decided to make the whole group gluten free, (except for cookies and such which can be easily segregated) which we both really appreciated. They sent me their regular menus, and I sent back an extensive list of substitutions of brands we like and trust. They never got the list somehow, and went to local health food stores and supposedly read labels, but I'm very nervous about the whole thing. I can just picture her out in the backwoods somewhere, feeloing miserable, with people who don't understand what's going on.

We're going shopping today for gluten free trail mix, etc.. We bring her up to the base camp tomorrow. Any suggestions? I don't want to be too obnoxious and seemingly neurotic by snooping through their provisions, since their intentions seem to be great, but ....

Thanks :blink:

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

That is a tough one for sure. But I am going to assume your daughter is very good about reading labels, so she could ask to see the boxes/cans/etc. before meals to make sure. And packing safe things for her is, of course, very smart.

I know it is very difficult not to worry, but the time comes when we have to let our children start living their own lives. She shouldnt NOT go to this because of fear of sickness. That will just cripple her for life.

This is a great opportunity for her to learn to be assertive and take care of herself. I would explain to her that it will be up to her to look over things before she eats to make sure.

purple Community Regular
purple
Posted

I agree with ShayFL. Also I believe it is your right to check over everything b/c its for your daughters safety. Schools check for weapons and drugs. To your daughter, food is just as harmful to her health. You might consider replacing their "wrong" items with gluten-free ones just incase they messed up. Then there would be no hastle.

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

The Outward Bound trips I've heard of are usually pretty isolated and can be long lasting. If that's the case with your daughter, I wouldn't hesitate to look through the food. Heck, I'm a worry wart, I'd look anyway! When I'm feeling nervous about my over protectiveness I usually just fess up really fast. "I know, I'm a worry wart. But a quick look through the food and I'll be able to sleep while you're gone." The Outward Bound folks are good at what they do and deal with parents is a lof of what they do. I'm sure you are not the first parent who has wanted to check up on things. And you have a perfectly good reason to. Find a way to say it in an upbeat manner and just do a quick check. Better that than your daughter finding out that they didn't realize barley had gluten or something. They wouldn't want to have to deal with that out in the field any more than your daughter would want to be sick.

I hope she has a wonderful time! I've wanted to do an Outward Bound trip for almost 20 years (yikes that makes me old!)

arkant Newbie
arkant
Posted
  • Author

thanks guys--

unfortunately they had packed away all their stuff when I dropped her off. I asked them to let her check the labels. Since its a backpacking trip, they've already stuck most of the stuff in ziplocs. It was very annoying because they are so in the business of reassuring parents, but know nothing about celiac disease. I felt they were working harder to pacify me than to listen to what I actually had to say. So they made a big effort to get wheat free food, but didn't check gluten. They thought it was a wheat allergy. So they bought unsafe oatmeal, nutrition bars, etc... Meanwhile, I'm afraid the other kids are going to feel resentful, and my daughter singled out, because everyone's food is going to be unnecessarily limited.

We arrived with two big bags of groceries, which they took, but now I'm feeling like I better Fed ex a bunch more.

We really need to get the word out about celiac more so that our children can grow up in a world that has a clue about what we are talking about.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748
    PatBurnham
    Newest Member
    PatBurnham
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      CT with contrast.

      By Scott Adams · Posted

      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      New labs are now very elevated

      By Scott Adams · Posted

      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.