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

Ok, Now I'm Upset

Roda

Recommended Posts

Roda Rising Star
Roda
Posted

My boys go to a summer ESP program two days a week while we are working. I filled out a TON of paperwork including papers describing my youngest sons food restrictions and celiac disease. I even talked at length with the director and she assured me they take things like this very seriously. Well obviouslly not serious enough at least for my child. They have to take a lunch but two snacks are provided. I informed the director that I would send his snack and not to give him anything. Yesterday they gave him fruit snacks. There probably wasn't a gluten issue with those but that's not the point. Today I walked in to pick him up and he had a bag of baked cheetos and it was almost gone. Again, he probably won't have a problem with those (I would) but I also found out he ate two prepackaged rice crispy treats this morning! :angry: The counslers stated that the director never let them know and they couldn't apologize enough. I doubt this will happen again and I suspect I will be getting a phone call from the director.

The other thing I am upset about is that I have stressed to my son (he is 6 1/2) that he not accept food from anyone. I have told him to tell them that he doesn't know if he can eat it. I realize he is 6 but this is something he is going to have to deal with the rest of his life. I need him to start taking that responsibility of telling people no. It really hasn't come up though because at school all of the snacks were gluten free and he knew it was safe to take things from the teacher. So a little learning process here on both of our parts. The other thing is my child will take advantage of a situation if given the opportunity and would argue with a brick wall. I have been packing his lunch with his extra snacks. I asked him why he didn't eat his snacks today and he said I didn't pack any. HUH? His brother said he has been throwing away a lot of his food and just eating what he wants and then it's gone. Lesson learned on my part, don't put the snacks in his lunch box! I will give his snack to the counsler when he goes in the mornings or keep a box there for him to pick out of.

I really hope his reaction isn't too bad. This is the first known ingestion of gluten since we did his gluten challenge back in March and we could only do it for three days because of the behavior changes. I know if it was me I would be miserable by now. So here is hoping for a good weekend.

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Makes you mad!

Maybe you can find out what the snacks are & which ones, like the fruit snacks he can have with the other kids. It would be nice if he could accept some of them. You could let him know which he can have. It's confusing for him because he may have fruit snacks and home made crispy treats so he thinks they are OK.

Jestgar Rising Star
Jestgar
Posted

Once you've passed the risk of going postal, take the opportunity to teach the counselors a bit about reading labels and just how confusing our food packaging is. They might appreciate learning a little bit, and it would give them a bit more power to understand food issues in general.

My mom knows a lot about food, but she was floored when she really started paying attention to labels because of me. Hell I was floored. What happened to food?

The six year old boy part is up to you. :P

Roda Rising Star
Roda
Posted
  • Author

Thanks guys. When it comes to the six year old he and I still have some learning to do. There are situations that come up for him that I never had to deal with by myself. Definately different challenges with a child. I will talk to the director and ask what the typical snacks are (what brands) to see if he can have any of them.

Cara in Boston Enthusiast
Cara in Boston
Posted

I would be so upset.

This is our first summer dealing with celiac. I completely trust my son's Kindergarten teacher to keep him safe, but not the various people he will come in contact with at all the different summer programs he will be attending. Just to be extra safe, I bought a rubber bracelet that say "Gluten Free" on it for him to wear when he is with people who may not know him well. Not only should it alert the person, but it will help him (I hope) speak up - he is very shy. He usually just says "no" quietly when someone offers him something but I have seen adults continue to offer it to him (again and again) as if they can't believe a kid is turning down a cookie or something. With his bracelet, he can just say no and show it to them (I'm guessing, we haven't tried it out yet.)

He thinks it looks cool, so I'm not worried about him being embarrassed wearing it. It is one of those rubber bracelets (like the "livestrong" ones) in bright red.

I bought it on Amazon.

I am amazed at how often he is offered food by virtual strangers. I guess I never noticed it before.

Cara

Anazoth Newbie
Anazoth
Posted

I honestly don't blame you and you have every right to be angry at this. They should have been told of your sons disorder and should have respected your wishes. A little gluten wont be a problem for him but it's not really the point. I am glad you stood up to them and let them know what you thought, well done :D

Roda Rising Star
Roda
Posted
  • Author

I don't thin it will happen again. I bet the two counslers call out the diector.

If it was me that wasn't informed I would for sure let my boss know. I too trusted his kindergarden teacher to give him safe stuff. In fact they they made all snacks for snack time gluten free.

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

Celiac.com Sponsor (A8-M):


Roda Rising Star
Roda
Posted
  • Author

Well, we dodged the bullet yesterday so I thought we were in the clear. NOPE! Mood swing is in full force this morning and he is fixated on the shoe thing. I still don't get that one. He had this issue before gluten free and it seems to resurface when he gets glutened. And then there is older brother who is telling me he feels icky again which he was doing all day yesterday too. Fun Fun! The only thing that could make it more interesting is give me some gluten too (just kidding) :P . I'd pitty the husband if we were all three "off." :lol:

Archived

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

Go to topic listing

  • 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
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,333
    • Most Online (within 30 mins)
      7,748
    Donna Chem
    Newest Member
    Donna Chem
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

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

      By Jane02 · Posted

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

      By knitty kitty · Posted

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

      By Scott Adams · Posted

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

      By trents · Posted

      Contact them.
×
×
  • 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.