stanleymonkey

I joined a Facebook group for Celiacs in my area thinking they would be able to provide support, they know the area, the stores etc.   the lady running it has been driving my crazy.  Someone asked about tax returns as in Canada you can get some of the money back.  I mentioned my experiences with the tax people and she kept going on about celiac this and celiac that.  Which unfortunately is the way the tax people are, it's either you have celiac disease or no issue with gluten all.  She seems to be unaware of the term gluten intolerant, it's all or nothing.  When you mention ncgi she goes off about celiac disease.  
I got mad and let rip, telling her that not everyone is (un)lucky enough to get a clear cut diagnosis, the testing is not always accurate and in our case when you have young kids seriously ill you can't wait and hope for a diagnosis you sometimes have to say screw it and go with your gut.  She does not get that celiac disease and ncgi is not a black and white issue, and belittles the people that are self diagnosed.

We were told me eldest could not possibly have any issue with gluten because she was following her growth curve, she wasnaround the 25 th percentile for height and weight, both her dad and I are on the shorter side so they said no issue, gluten free she grew 3 inches in 3 months! And hit the 50 th percentile.  
Growing doesn't mean damage isn't being done.  And as for the allergies, my daughter had anaphylactic allergies to milk and eggs, gluten free they disappeared.  If she gets glutened she'll get hives from milk. Our allergist said her immune system was so taxed with the gluten reactions, it just basically freaked out.
I'd try gluten free as a trial, and I am sure her allergies will ease a little.

My daughter tested negative for everything under the sun, despite having diarrhea 20+ times a day, no fat on limbs but huge belly, thinning hair, nails not growing, horrific rashes that didn't respond to treatment, odd behavior
Our original diagnosis was reflux, and to cut out juice (which she never ever drank) and dairy ( which she had an anaphylactic reaction to so I would have known if she was getting any!)
She got to the point she was lying on the look all day crying, not eating, sleeping our growing, bt all her bloodiest were negative fr everything from parasites, celiac, diabetes, etc
Ct out gluten.......by magic she is all better
Our pediatrician said celac can affect yor gut, our blood is not your gut, don't believe blood tests blindly...........which is why he is still or doctor!

when my 3 yr old is feeling bad all she eats is rice, actually, you should boil some rice tillit
turns to mush, use stock instead of water, you'll have congee! My Chinese mother in law swears by it when people aren't feeling good and it really works
also water with a little piece of ginger in it, ginger is great for your digestive system, if you believe everything my mother in law says, it cures EVERYTHING

the stupidest thing we always seem to hear is the word virus
me- my 2 yr old has been having diarrhea on and off for a while, now its green water and mucus
doc - its probably a virus
me- what to I do
doc - keep her hydrated
me- what if it doesn't clear up
doc-its a virus it will
me- she's lost a lot is weight and hasn't eaten for days
doc-a virus will do that
repeat this conversation every few weeks at the emergency department for about 6 months
get an appointment with GI department head
I tell them all her symptoms, weight loss, fatigue, rashes, bloating diarrhea and constipation, lack of appetite or eating me out of house and home!, dental enamel defects, fontanelle still not closed at 2 yrs old and 9 months, joint pain, easy bruising, reflux, muscle loss, muscle pain, thin hair
the verdict VIRUS!!!! Has probably damaged nerves in her bowel,
a friend of mine is training to be a nurse and has noticed how often the v words is used
go back to this idiot on Friday if he says virus I may have to punch him out

hemp milk is good, also try becel vegan margarine, of fleischmanns
daiya does shredded cheeses that is vegan, gluten and soy free
enjoy life brand has products that are guaranteed free of the top allergens
ask for a federal to a dietician, we are in Canada and after our daughter had a horrific reaction to milk we were instantly issued with 2 epipens and dates for a dietician and allergist
we are gluten, milk egg and soy free' when booking all you do is replace the milk with non dairy, butter with dairy free margarine, and eggs with apple sauce if sweet things, egg replacer or ground flax in savoury
google flour conversions and you'll get ways to substitute flour
I first freaked out and sometimes it seems she is always eating the same stuff but the is eating so at least that's good!

our daughter had positive gene test but everything else was negative, the GI at the children's hospital said that meant she had absolutely no issue with gluten and her tummy problems and rashes were nerve damage, we went gluten free and all her issues disappeared

I'm a teacher and I banned sanitizer in my classroom, the over use over hand sanitizer is like the over use of antibiotics!  I taught in the middle east, and most kids who had nannies were sterilized every time they touched something, crazy huh?
to the OP, I'd try cutting out all dairy, caesin can be a big issue even for people who aren't celiac.  The body has a tough time breaking down the protein in milk,

go to London drugs and tell them what you need. The London drugs in b.c. Where I am have always been super helpful, even called manufacturers

the specialist at our local childrens hospital told us our daughter in no way had issues with gluten as her ttg was normal the two times it was tested, and the fact she was growing
well we decided to trust mommy instinct, and 2 days gluten free i have my happy, spunky, funny 2 yr old back, no 2 hr tantrums, no clinging to my side
we are going back to our original gastro, he  suggested gluten-free no matter what the tests said, and he was right!

i'd go with eggs in things first like baked goods. our daughter had IgE tests done and her egg was 1.7 range 0-4, o being not allergic. based on her results she should only have a mild reaction according to the allergist.  i had egg salad, washed the spoon and she grabbed it and all it did was touch her chin and she instantly broke out in hives
so numbers aren't always a clear indication of how you will react

get himr retested, and for anemia, my SIL is aneamic and feels the cold
tests are unreliable in young kids so now he's a bit older it may give you a psoitive
or even just remove gluten and see what happens, unless you need a diagnosis for insurance reasons, or to get cooperation with   his school for glutren free lifestyle
def go to the doc, and ask for retesting