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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
BTW when they do the endoscopy the child is put to sleep with a mask first before inserting the IV. That helped a lot for us. We started with my 7 yr old flailing and kicking the nurses who wanted to draw her blood to 4 yrs later her saying , ugh, not again. it does get easier, and in life she will need to get blood work done at some point .
Dee made some wonderful points about prepping her , talk to your Dr's about it.
In addition to StaphanieL list : If you need accommodations for college you will need DX .
In reality you have no idea about your future , where she will be and who's care she will be under on a daily basis and a DX really helps others to reinforce her needs
We have been gluten and nut free in school for years. However, my DD can have rice so eliminating that certainly makes it very challenging. Do you have someone with nut allergies in your child's classroom ? If you don't , you may have lotz of wiggle room with the (made in facility rule ) if you do you should start with a request for change in classroom . There may not be many rice free/nut free packaged foods but home made meals can be supplied and we have had usage of microwaves in school for years . Start with a sit down mtg with the principal, I have found them to be more accommodating than expected.
Honestly you will be overwhelmed with this for awhile, but, you will figure it all out and no matter what your child will get better. Ask any and all questions there are tons of great idea's here. You are not alone !!!! We have all experienced mistakes and wins with our kids, ourselves and our families.
I personally would say NO to all Gluten containing items and supply my own mat to be stored separately. Cross contamination is a real threat in the classroom. My 504 plan is clear on this and I have even talked to the teachers about having kids wipe desktops top to bottom as when they will wipe side to side and they were just flinging the crumbs across the desks.
Well I don't know of any relationship between Asthma and Celiac ., but that doesn't mean it can't exist. There are levels of allergens in different breeds of cats and dogs . The Siberian and Oriental shorthairs cats don't affect 75% of cat allergy sufferers and the Balinese, Javanese, Devon and Cornish Rexes and Sphinyx are also less allergen. Many Terriers and Poodles are also "hypo Allergenic". So his level of reaction could be breed based , maybe?
Also females have less of the allergen enzymes as well as neutered males vs unneutered males, light colored coats vs dark colored coats etc...just a thought !!
I only know all this as I am severely allergic to cats and lesser to dogs. My husband and daughter are CAT people and I am trying to find a breed to work for us. :-)
I have had to use a nebulizer myself when I had respiratory problems , It worked tremendously. good luck
Everyone is different for us my DD was 7 at the time with completely atrophied Villi .
Sleep -1-2 weeks
Bowels - mildly better in 2 weeks but she had underlying issue's with Lactose( we didn't realize for 2 yrs) and a undiagnosed Thyroid problem
Behaviors - they got worse before better , almost 2 months
sensory issue's - about a year
Gassiness - years due to lactose intolerance and Thyroid problems
If I could go back I would immediately cut out as much lactose as possible to get a better picture in the beginning. We switched to Lactaid and hard cheese or lactose free cheese and eating yogurt at near room temperature and it's made a huge difference almost immediately.
Migraines are certainly common. Smartwater helps or taking a magnesium tablet and eating a banana a day with PLENTY of water daily can help too. Keeping my DD super hydrated with a magnesium tablet 3 x week reduced her migraines by 80 %, but that's us!!!
You can try switching out Lactaid for regular milk and use hard cheese like cheddar for a bit see if it helps with any tummy pains. Stay away from any non gluten-free oats. It may take weeks/months ( it took us 2 months) before you see big changes and he may go thru some personality/emotional issue's while that is happening.
Is your whole house gluten-free , if not triple check all his pots/pans /toaster etc... hidden gluten is everywhere
Ahhh Girl scouts : the parent volunteer run program
I have had mixed responses with this. Our passed troop leader did little to nothing to accommodate a gluten-free or mostly gluten-free environment for the troop mtgs or day events. New leaders this year so we will see.
On the camping events and overnighters we have had really exceptional help in insuring a safe food environment. We got lucky the day camp had a nurse with a Ceiiac child and the overnighter food events was run by a woman with gluten intolerance who actually brought her own pots pans etc.. in for herself and the kids.
It really is how the leaders receive and react. You have no control over it. On one daycamp BBQ event I sent everything except drink and bagged chips. It included Hot dogs wrapped in foil , bun ,sides , a smores baggie with her own toasting stick etc... on another overnighter event i sent a smore's pack and a backup snack bag. Situation's vary depending on the volunteers.
Call and speak to whoever is in charge in advance.
If you have the option of volunteering for lunch duty for 1 or 2 days, that can give you the insight you need regarding cross contamination at lunch. My DD is 10 and in 5th grade and they have switch classes. If your girl has the same make sure the switch desk is being wiped down after snack time. Also a snack/lunch mat brought from home will dramatically cut down on CC issue's.
Keep up the food diary for a while you may notice a trigger like dairy, soy, oats or corn. Probiotics are a good idea. My DD has multivitamins,Omega 3 and Fiber gummies everyday. We are 3 1/2 yrs gluten-free and she still has constipation issue's with the opposite happening when we use Miralax, and with the added DX this year of Hashimota's disease there is always something. My girl doesn't eat veggies so until that changes for us, it will always be like this.
My DD is entering 5th grade and I just finished our 504 plan which we will present in a couple of weeks. She is also dx hashimota's disease, overweight and doesn't eat any veggies except carrots and only 4 fruits ,which is proving difficult if damn near impossible to control her weight and constipation issue's. I have included in my 504 the option to use a safe microwave which I will purchase if necessary, I am hopeful this will provide options we never had before.
My 10 yr old DD is 3 yrs gluten-free with a dx of Celiac. This year she was also dx positive Hashimota's with elevated TSH levels. We started Levothyrozine 5 weeks ago. So far all is great. She is not as tired , no more leg pains, better attention span and less anxiety . In addition her 4wk followup shows perfect TSH levels.
It all depends on the person and their reaction to the medication, for us it went great..
For the house:
in mason jars put in your favorite pancake/waffle or pre-seasoned rice recipe (add liquids when you get there)
I would pre-clean/cut and marinate my own meats and bring them frozen ( easy enough to defrost and cook later)
one night try a do- it- yourself baked potato bar with all the fixins
another time try taco night you can even make the taco bowls using the upside down cupcake pan method
For the amusement park:
bring a jar of PB and jelly or fluff with bread for sandwiches
pickles fyi they have individual size serving pcks of olives and pickles in the stores :-)
pre make a huge batch of your own granola and/or trail mix you can eat it plain or buy milk for a cereal type meal
I feel like I live in the kitchen for 3 days prior to any get-away vacation lol