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Just Starting Out, How Careful Do You Need To Be?


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10 replies to this topic

#1 PLGW2012

 
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Posted 13 March 2013 - 07:08 AM

My 8-year-old daughter was just diagnosed with celiac disease, and I'm overwhelmed (which I'm sure is very common). How careful should I be? Do we need to keep food separate, use different utensils, avoid French fries that may have been contaminated in a fryer, etc?

She doesn't really have symptoms, so I don't think it will be super obvious when we accidentally give her gluten. But is a basic diet good to start with, or do I need to start checking her lip gloss ingredients?

It just kind of hit me last night - we web to Applebee's for 99 cent kids night, and there was nothing on the kid's menu that wasn't full of bread and/or breaded. It was like a kid's gluten free for all.

I know I need to learn where it is safe to eat and where it isn't , but how careful do I need to be in other areas?
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#2 cavernio

 
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Posted 13 March 2013 - 07:54 AM

"Do we need to keep food separate, use different utensils, avoid French fries that may have been contaminated in a fryer, etc?"

Pretty much. Most dishes can be cleaned thoroughly enough though, but then you have to use a separate or clean cloth for them. Things like scratched frying pans or baking sheets that get that brownish coating on them though aren't safe. Neither are mesh colanders or anything wooden. Unless it's a glass cutting board that won't be safe for her either.

 

Most restaurants aren't safe to eat, don't even try right now.

 

She absolutely shouldn't be wearing lip gloss that has gluten. The ingredient list might not mention gluten but that doesn't mean it will be safe. Scents often have gluten, and they'll just say 'perfume' or whatever. Easiest thing is to only get lip gloss that advertises as gluten free. (I'm personally not a fan of going through ingredients for most foods anyways, "may contain traces of" is entirely voluntary on labels. Fresh food is the only guaranteed safe food.)

 

Make sure she washes her hands before eating anything. Get gluten free soap.


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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#3 gancan

 
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Posted 13 March 2013 - 08:00 AM

Yes you do have to be extremely careful. In my case my entire family eats anything and I have to be the careful one which is overwhelming for me since I am the mother who makes everthing for everyone else! I am constantly washing my hands, cleaning utensils,  running out of clean dish towels etc... I have never ran my dishwasher so much in my life!

 

I would recommend making simple meals for now while you're all adjusting especially her instead of buying up all the gluten free versions of breads, crackers, cookies... for an 8 year old she may want all that stuff but it can be costly. I make a lot of dinners with sides of potatoes or rice so that it satisfys everyone and I don't have to be as careful while preparing the dinner since its all gluten free.

 

Best of luck to you! :D 


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#4 PLGW2012

 
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Posted 13 March 2013 - 09:55 AM

Oh my gosh, gluten free soap? It looks like diet is only part of it then. She loves lip balm and Chapstick (I shouldn't have said "gloss", she's only 8 so it's not like she's wearing makeup. So I'm gathering that basically anything that could potentially get n her mouth could cause problems, right?

Her dr is a self-proclaimed "celiac expert" but he only mentioned diet, not soap or anything else!
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#5 kareng

 
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Posted 13 March 2013 - 09:58 AM

Oh my gosh, gluten free soap? It looks like diet is only part of it then. She loves lip balm and Chapstick (I shouldn't have said "gloss", she's only 8 so it's not like she's wearing makeup. So I'm gathering that basically anything that could potentially get n her mouth could cause problems, right?
Her dr is a self-proclaimed "celiac expert" but he only mentioned diet, not soap or anything else!



Most soap is gluten free. Maybe some specialty soaps that have wheat germ oil. Might want to skip the oats in soap or lotion. I use Chapstick. They used to say they were gluten-free but last I looked they didn't. They didn't change the ingredients, they just don't test for gluten so they don't want to say that.
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#6 langone7

 
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Posted 13 March 2013 - 10:31 AM

It depends really on how bad she is.  I am not super careful myself, in the way that when I cook I am sure that there is occasional cross contamination.  While, my symptoms are miserable night sweats, severe fatigue, bloating, nausea  etc. The occasion cross contamination does not affect me, however that is different from individual to individual.


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#7 langone7

 
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Posted 13 March 2013 - 10:33 AM

But yes my soap, shampoo, makeup everything is gluten and dairy free...but like I said there always that occasional oops moment (and yet I seem to be okay), but I wouldn't reccommend the risk


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#8 cavernio

 
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Posted 13 March 2013 - 02:19 PM

I think it would be really important for her to also know to not eat anyone else's food at school or daycare or wherever. I don't have kids myself, but 8 seems just old enough that she can really grasp the seriousness of eating something bad for her, and for you to teach her what foods she can and can't eat.

 

Yes, I have found out that many soaps are gluten free, pretty much any soap company I've contacted says gluten free. Most companies are pretty good at giving you gluten info and are prepared for the question, and will have up-to-date info about their products also, unlike the internet. Hand and dish are the ones that I would say are pretty necessary to be gluten free, others not so much. Oats seem to be in lot of lotions for some reason.

 

I was thinking of lip smackers, I wore that stuff as a kid. and it smells like candy, and invariably I always tasted the candy-smelling lipstuff to see if it tasted as good as it smelled.


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diagnosed Jan 2012, bloodwork only
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#9 LauraB0927

 
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Posted 16 March 2013 - 08:54 PM

Definitely check all the lotions and toothpaste as well - Colgate regular paste is gluten free...not sure if this applies to her or not but Play-Doh also contains gluten (I was surprised when I found that out too) and is made from wheat flour - so if she plays with it, then you'd need to remove that as well.  (I'm a child therapist and can no longer use Play-Doh in therapy with my clients)  There are recipes online for you to make your own gluten free version.  Also double check any medications that she takes - some medications use gluten as a filler for the pill, just check with the pharmacist each time she gets a medication (whether prescription or OTC).  They may need to call the manufacturer to confirm.  I know it seems overwhelming now but you'll get used to it!!    


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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
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#10 PLGW2012

 
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Posted 17 March 2013 - 06:38 AM

Thanks for all of the info. I can already tell this is going to be a challenge. Last night at dinner at a restaurant (after I'd researched what she could eat) my husband handed her a breaded mozarella stick and she ate it before I could stop her. My husband and friends were saying, "Oh, it's  a process, we'll get used to it."

 

But after the dr told me to look at it like it was poisoning her, I don't think it should be a process, I think we should just get rid of it all now and never let her have it again! I think the hardest part will be teaching her and the rest of the family to watch for gluten.


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#11 LauraB0927

 
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Posted 17 March 2013 - 07:12 AM

If you have a smartphone (Iphone or Android) they have these really great gluten free apps that help you with researching ingredients or places to eat.  I use Gluten Free Registry (its free) and you put in your current location (or location that you wish to dine in) and it will pull up all the places in the area with gluten free menus, plus reviews of how other's experiences were with the restaurant.  It has helped me avoid some pretty shady places!  But its also come in handy - after bowling with friends they wanted to find a place to go eat, so I just took out my phone and within 5 minutes I found a local steakhouse within 10 mins of the bowling alley that had a certified gluten free menu.  It turned out great!  I hope this helps!


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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient




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