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

Birthday Party CC


mama.liz07

Recommended Posts

mama.liz07 Apprentice

Hi!  My 9 year old son and was diagnosed with celiac disease about a year ago. Since then, we have discovered that he is VERY sensitive to trace gluten.  Also, he's just one of those absent-minded, really smart, day-dreaming-type boys who is always in another world, thinking...thinking.  And when he is thinking, he usually pulls at his lips without realizing it (we have tried EVERYTHING to stop this habit with no success yet).  Plus, he just isn't always the most aware of what his hands have touched (in another world).  So, in light of all that, we're trying to figure out the best way to handle birthday parties at party locations that have lots and lots of gluten everywhere.  Like, chuck-e-cheese...gluten all over the tables, chairs, little kids with greasy pizza hands touching all the games, etc.  I can bring our own food and I can wash his hands before eating, but the odds of him sitting through the whole meal without touching the glutened table/chairs, etc...and then making it through all the games without ever touching his lips...eek!!!  The jump houses are worse b/c then the pizza grease is all over the inflatables and he's getting it all over this clothes too.  We've gotten glutened at several birthday party locations with the cake/pizza problem, even though we are really careful with hand washing, walking to the table without touching anything, etc.  I'm not sure what to do.  It's pretty much the only time he gets glutened now b/c we're too scared to eat out anymore and our house is completely gluten free.  I don't want to cut out birthday parties too...  Any suggestions? 

Thanks!

Liz


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



Celiac.com Sponsor (A8-M):



TexasJen Collaborator

Wow! What a tough situation. I'm sorry.....

If I am eating with my hands, I always make sure to wash my hands right before hand. I know that doesn't help that much, but it's a good habit for your son to get into. If you do it all the time now, maybe it will be routine in the future.

What about wearing gloves? He would be unlikely to put a gloved hand in his mouth. I know he would stand out in this situation, so I don't know if he would be willing to do it/ if the kids would make fun of him Etc. He'd probably only have to do it for a year or two. As he grows up and matures, he'll be able to be more aware of how to self-manage this illness.

Good luck!

pschwab Enthusiast

I'd love to follow this thread! We have the same situation with our son. When we do dare to try eating out, we have things we try but I'm not sure they are effective enough. I wash down the table top, edge and underneath. Then we put down a silicon baking mat. We are "training" him to never touch off his mat or put any food or utensils off his mat. It's constant reminders throughout meals, but the mat idea seems to help especially since it's bright red. Any other suggestions would be great!

mama.liz07 Apprentice

Thanks for your replies!  I love the baking mat idea.  What do you use to wash down the table?

And gloves...you are probably right--he wouldn't play with his lips with gloves on.  Maybe just at home would be enough to break the habit.  Something to think about.

It's nice to know we're not the only one!  :-) 

Any other ideas?  :-D :-D

squirmingitch Veteran

Rather than fabric gloves which can be awkward, how about using the nitrile gloves like doctor & dentist offices do? 

I understand you're trying to break him of the touching/pulling at his lips. How about giving him something to replace that habit with? A squeeze ball he can hold in one hand & squeeze. A marble he rolls around in his hand? I don't know; I just know that it's easier to break a habit if you have something else to replace it with. In other words create a new habit. 

How about hypnosis? That could possibly work to break that pulling lips habit. Combine that with a new habit to replace the old one & hopefully there will be success.

pschwab Enthusiast

I just use Wet Ones antibacterial wipes to wipe down the table. We keep a small soft cooler packed with wipes, the silicone mat, a mini bottle of personal ketchup, a box of chocolate milk that doesn't need to be refrigerated, crayons, etc so we can grab it on the way out the door. Then we put the mat back in the front mini pocket to be washed so the inside of the cooler isn't getting exposed to gluten. We also keep baby wipes in the car and with us and are constantly washing with those until we can get to soap and water.

artistsl Enthusiast

This sounds really weird, but have you tried giving him vitamin B12? The reason I ask is because you mentioned that he has a strong habit of touching his mouth. My son had a strong habit of touching his eyelids. Not all the time, only during times when he might be perceived as being in deep thought or very focused on something. This was his only lingering symptom after going gluten free. The neurologist diagnosed it as a "stereotypy". Despite not testing positive  for vitamin b deficiency I decided to give him a high dose of B12. After 2-3 days the stereotypy disappeared and only comes back mildly when he is accidentally glutened. Sounds strange, but I almost wonder if your son might be experiencing something similar.


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



Celiac.com Sponsor (A8-M):



mama.liz07 Apprentice

Wow, thanks everyone!  I don't have time to reply to each person right now, but I am going to read and consider everything.  We'll make this work!  :-D  Really appreciate it!!

knitty kitty Grand Master

Hi! I thought that a doctor's mask or disposable filter mask might prevent your son putting his hands in his mouth while playing.  Get him some little scrubs, and he can pretend to be a doctor.   Another idea is to dress him as a cowboy with a ten gallon hat and bandana over his mouth.  Kids like to dress up.  Wearing a costume might take attention away from wearing mittens in the summer. :)

  • 1 month later...
CeliacMommaX2 Enthusiast

Wow!  It sounds like you are describing my 7 year old!  We have the same problem.  Celiac is making us so very anti-social.  There have been multiple occasions that I just declined invites because she is that sensitive to tiny amounts of gluten.  I struggle enough with just family get-togethers in which I'm there!  I wish I had good advice for you...

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. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,156
    • Most Online (within 30 mins)
      7,748

    mike101020
    Newest Member
    mike101020
    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

    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.