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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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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

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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!

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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!

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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

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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.

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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.

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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.

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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!!

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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. :)

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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...

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