Newly diagnosed with Celiac - HELP

[Danielle]

Hi - I've been reading the threads on celiac and wanted to ask a few questions for those who have been down this road...Zane's bloodwork came back as "off the charts" positive for Celiac Disease. We will likely get the biopsy anyway but his doc seems certain his levels are so high that even if there isn't damage to the intestine yet, there will be soon if we don't take him off gluten.

I am having a VERY hard time with this....and I'm sure you can all relate to any child having yet another problem on top of DS....it just sucks.

So some questions: Do I REALLY have to put him on a gluten free diet if he really has it?? What if I don't??

What if he absolutely refuses to eat these foods that I hear are just awful?? He's pretty picky anyway (as many of our kids are) -- he's just going to freak out!!

And why can't we just remove most major sources of gluten -- why does it have to be so strict?? (I mean, I hear you have to get a separate toaster to avoid cross- contamination of food - really??!!!)

Help? Thanks!!

[ALLISA]

Danielle,

I sent you a personal message on top of this...but just in case you didn't get it....


HI ! It's Allisa, Erin's mom from Zane's class !!!

How in the world did I not see you posting before on Uno ?

How did we miss each other ?

I'm so sorry to hear Zane has Celiac....I have a couple of friends who have gone through this....so if you didn't get my personal message I sent you.....email me ([e-mail]) and we'll talk.....it does stink to have soemthing else on top of the DS.....but you'll get through this !

My 2cents for anyone else reading is that the gluten free diet DOES need to be followed striclty.....but worry about cross-contamination through plates or toasters depends on the sensitivity of the child.

Allisa

[wrblack]

Dunno from Celiac and don't want to. But do know something of what you mean about dx's on top of dx's, Charlie's got more than his share.
Dr. Leshin has an essay on Celiac disease, www.ds-health.com/celiac.htm
with some useful links at the end of it. Also think there's lots of info and help to be found on the web for gluten free diet.
Good luck,
Bob

[CC]

Hey DANI girl, can't share anything on this subject, as I know nothing bout it. Just wanted to send you HUGS girl, I can only imagine a special diet when one is a picky eater to begin with

We have to chat soon girl, is your Yahoo up?? Been way toooooo long

CC ~

[Ashlea]

Hi, this is Chandler's Mom (age 6) and he was diagnosed about 3 years ago. From everything I've read, you absolutely MUST follow the diet. I don't personally know anyone that has been diagnosed that doesn't follow the diet, but our Dr. told us that by not following it we greatly increase Chandler's risk of stomach cancer, seizures, severe malnutrition, slow growth, etc.... And the diet.... it is a MAJOR pain, not to discourage you but I HATE it and yes it sucks!!!! Chandler's blood test levels were also very high, but we also had the biopsy to confirm the diagnosis. If you are planning on having the biopsy, you should NOT start the gluten free diet until after that just to make certain that the GI results are accurate. As far as cross contamination, we toast Chandler's food on broil in the oven on a piece of aluminum foil just to make it easier and are reasonalby careful in preparing his meals but not obsessive about it. He eats alot of spaghetti, grilled cheeses, cinammon (sp) toast, cheese burgers (no bun), egss, bacon, grits, veggies, things like that. There usually is a decent substitute for most anything except crackers.... I will be happy to answer any questions you have....

[wrblack]

Still dunno from nothin', but for crackers, out of idle curiosity I googled gluten free crackers, came up with a bunch of stuff, including Glutano crackers:

www.glutenfreemall.com/st_prod.html?p_prodid=1490

Maybe a bit pricey. Think you could also find recipes to make your own. Maybe a bit daring.

When contemplating this buiness, I was worried about gluten-, casein-free ice cream sandwiches. Couldn't imagine. But I'm told there are such. Haven't tried them and don't want to.

[Ashlea]

Okay.... correction. They do make gluten free crackers. They just aren't fit to eat...LOL. I have in the past made homemade Cheez It type crackers and they were really good, but it did take me several hours and lots of patience!

[ValerieC]

Hey, those ice cream sandwiches are not bad at all. They are actually made with soy products rather than dairy. MMMMMMMMMMM!

[Danielle]

Thanks, everyone. Heavy sigh.....lots to think about and digest (parden the pun). I appreciate the input.

I'll let you know when we have a firm diagnosis and keep you all posted.

Danielle