strawberrygm

my celiac dd will be turning 10 soon.

i read the cake thread, so i will be ordering and baking a pamelas vanilla cake.

she is having a luau -- and i am not a cake decorator.

i am sure i can find someone to come to my house and decorate it for me.

so what do i need to get as far as the icing and colors, etc go?

i am concerned about how i am gonna make it. my dd has recently been diagnosed, so i am trying super hard to keep things normal for her and keep us all eating the same meals.

i refuse to cook regular biscuits, cinamon rolls, etc and her smell them and not be able to eat them.

i love to cook, but we are such a busy busy family. but i love to cook, when i am not rushed.

i live in a small town, so alot of the ingredients i see you all talking about i have never seen or heard of.

i created a meal the other night for our whole family and we loved it. chicken, white rice, potato brocolli and cheese soup, mixed it all together in a casserole. then added cheese. it was yummy! (i was SO thankful that rice was gluten free)

anyway, i need to know that we are gonna make it work, without me being super chef??

my dd has just been diagnosed.

my youngest child has been getting bumps, mainly on his face but some on his shoulders and upper arms, chest and neck.

he is eating more and more table food as he is getting older.

the bumps used to not be there at all.

they dont seem to itch or bother him.

they seem to be under the skin, if that makes sense.

he also has the yellowish nasty poops (not all the time, but sometimes)

i am going on a search for gluten free foods for my dd today, so i will also be looking for baby foods and trying him on it as well to see if it makes a difference.

what do you think?

WOW....am I ever glad to hear from you. We could SURELY use some help. I am the branch manager (I'm using that term loosely as I don't have time to do much managing) of the Savannah Celiac Support Group. Are you relatively new to Savannah? We've been organized since about 2004 and the local newspaper has been WONDERFUL to us. Here is a link to the first article they did on celiac disease:

Open Original Shared Link

I was a bit embarrassed that the story focused on me but it did get the word out. We now have about 100 people on our email list. We also had another nice story in 2005:

Open Original Shared Link

Nancy Wheeler was our then branch manager and did a lot. But she's moved to New York City and everything has once again fallen into my lap.

Since you mentioned ROCK, is it your child who has celiac disease? We have a number of members whose children have the disease.

I am VERY anxious to talk w/you. Please respond privately to this post and I will provide you w/my home phone number although it is also on the GIG website.

Hoping to hear from you soon, Linda Ostrow

oh linda.

i am from savannah, tn. not georgia. i am so very sorry.

i will pm you anway.

i didnt realize rice was ok. i thought since it was pasta-like, it was out. thats a huge help right there!

is it only certain brands or types??

i thought about the foil idea....thats something i can certainly handle.

i want to eventually transfer us all to gluten free, just replacing as i go. my youngest son is almost 9 months, and the more breads, etc he eats, his face seems to be breaking out more and more. he sometimes has the tell-tale yellowy poops as well. my almost 3 yr old son doesnt seem to have any physical symptoms, but boy is he hyper and can be a pill! it may just be -- being a boy -- but heck, if gluten free is healthier anyway, whats to loose?

but at first, it will just be dd.

she had pos blood tests in april. had to wait for scope and results before going gluten free. seemed like so far away. now it has snuck up on me. she goes gluten free tomorrow. i have purchased.....NOTHING!!! NOT ONE THING!!

we have veggies in the house, but tomorrow i guess we will be hitting kroger/walmart and making the 1hr one way drive to the amish store to see what we can get. due to financial issues, we can't go wild buying things, but can get started.

on the mil thread...great suggestions....but....and i dont mean this to sound anyway other than a curious newbie, but, please tell me my dd will be ok with me just washing all our baking sheets, pans, etc really well (dishwasher) until we can build her a stash of her own. there is no way we can buy everything.

we can probably get her her own toaster this weekend, and maybe a microwave.

did you all go out and buy buy buy when you started or did you just get a little here and a little there?

i am starting a local support group. looking forward to that.

u am so very thankful for this site and everyone's help!!!

am i the only newbie totally overwhelmed by this post??

i appreciate all the info ... wow ... my head is spinning

thanks gluten-free-guy and jerseyangel.

i appreciate both of your help very much.

i appreciate the tips you gave me, gluten-free-guy, on the happenings of meetings, etc. it will be very useful to me.

and jerseyangel, i will certainly send your friend a pm, thanks for letting me know!!

i am going to start a support group here in my local area.

i dont have the funds to join any of the patented groups like ROCK, so i guess i will just form my own little group.

i will either have the meetings at our library or at my church.

i need a name for my group -- my city is savannah -- so i thought of savannah sillys -- but i dont want to take away from the seriousness of celiac with the word silly -- however, you gotta laugh and have fun to cope, right?

any other suggestions?

also, i plan to gather info and send to my local paper to run an educational bit on celiac, and announce the supprt group and its first meeting.

how often should a group meet to be helpful/effective? monthly/bimonthly?

i am assuming we should have gluten free snacks....do some companies send these to groups for advertising?

any thoughts, ideas, etc you have would be great!!

thanks!!

she did great!

she was a little more drowsy afterwards than when she was for previous surgeries, but those were 5 yrs ago.

doc said all looked great.

they did an endoscopy and colonoscopy.

he said he biopsied 4-6 samples, and i can call friday to get the results.

i had planned on starting the gluten free diet today following surgery, but doc said to wait until we got the results from the biopsies.

she knows she is having the endoscopy and the biopsy. i just have left out the colonoscopy part. afraid her anxiety will get the best of her a the thought of something going up "there".

but you are right, i do NOT ever want a trust issue with her.

no, we live in hickville, no trader joes, no whole foods, no asian market.

there is an amish store about 45 minutes away.

we will talk tonight.

thanks so much for your help and reassurance.

my dd's scope is tomorrow

they are also doing a colonoscopy along with the endoscopy and biopsy.

what are they looking for with the scope and biopsy? what about the colonoscopy?

will she be sore after the colonoscopy? i havent told her she is having this, as i dont want her thinking about it and worrying.

also, i havent purchased a single gluten free bread, pasta, cracker, etc.

i should have been stocking up all along.

she was thrilled when we seen "gluten free" right on the vienna package the other day.

this is the first time he has ever done this

it is only on his trunk, with a little on his neck and maybe 1-2 on his head.

none on his hands, feet, arms or legs.

it goes away and comes back, has done this several times today.

my 8 month old has been a bit fussy the past few days, but i just thought teething.

yesterday we were at a friends house he had never been to, and after being there about an hour i noticed 3 spots on him. within 20 minutes he was covered in them, his eyes were red and puffy, and he was wheezing some.

i rushed him to his ped's office.

the p.a. saw him, strep test came back negative. she said it was hand, foot, and mouth disease.

we came home and an hour later he was asleep and there were no spots on his back at all.

he has had a few spots off and on since then, and now, 24 hours since we were at doc office, he is broke out again.

my first thought was an allergic reaction, maybe to pine sol, and the fact that it went away last night really made me think thats what it was.

but now that it has came back, and there is no pine sol in my house, i am just as lost as ever.

does it look like hand, foot and mouth to you?

could it be a possible reaction to gluten?

thanks!

my dd (almost 10) has had 2 positive blood tests for celiac.

she will have a biopsy on june 17.

her brothers, age 3 in july, and 8 months are to be tested. i havent taken them in for the bloodwork yet, as i am just afraid they will get a false neg at this age.

however, the baby is showing some signs such as rotten poops (not completely yellow yet) and mild skin reactions.

should i go ahead and have the bloodwork on them?

Is it an absolute no-no for a celiac person to have foods that are safe themselves with the exception of being processed in a facility.....?

I just wonder how careful and clean the facility itself is and how high the chances for cc are? I mean, I know its better to be safe than sorry. But we also live in an age where you have to put warnings on coffee that it is hot.

my dd is 9 and has had 2 positive bloodtests.

we are waiting for an endoscopy and colonoscopy.

i havent changed her diet b/c of waiting for these tests, although i wish i could go ahead.

she also has a dad we dont live with, who, like yours, isnt very good at believing what i say. i want all the positive tests i can have to prove to him whats going on and to live by it.

i wish i could afford enterolab tests.

good luck to you and your son!!

i am preparing to start a support group for my area. i am in hardin county tn.

since it is such a small area here, i cant decide if i want it to always be kid included meetings, or some with them and some without.

can i do ROCK like that?

any ideas, info, thoughts on starting this group would be great.

i want to have a meeting during the summer and then another right when school starts so teachers, lunch staff, school nurses, principals, etc can come too.

my dd's dad lives in memphis, and i am trying to find some educated people for him to meet.

i am in savannah tn

a few hours from you

i plan to start a group soon here

Can anyone point me to a doctor that understands celiac in Memphis TN?

Any support groups??

Thanks!!

that was a very good way of explaining it.

i appreciate the time, thought, and effort it took for you to respond in such detail.

thanks so much!!

so, dd's father lives in Memphis.

surely there is a support group there.

When I need a quick clear cut reason for someone like a waitress (a person I probably will never run into again) I always use the term "Sever Allergy" because that gets my point that it has to be gluten free across most effectively.

For someone who would see my daughter regularly I give them this "lecture" (for lack of a better term) *most o the info I got from Gluten Free Living for Dummies

When anyone (even people without Celiac disease) eats gluten containing products it causes our bodies to produce an excess amount of zonulin. (A protein found in our small intestine that basically works as a doorman allowing the nutrients of our food to pass into the bloodstream) You heard me right.. EVERY person on earth produces too much zonulin when they eat gluten! Having too much zonulin opens so many ..doors.. that toxins (gluten fragments) get into our blood stream that normally wouldn't have been allowed in.

This is where my daughter's body acts differently than ours does. Her body sees these gluten fragments as invaders and it launches and attack against them.. the problem is her body also attacks itself (the autoimmune part of this Celiac) She produces antibodies ant react against normal, healthy tissue rather than the bad stuff.

Her body attacks the villi (the little finger things on our intestines that help absorb nutrients) on the lining of the small intestine causing them to flatten (really they are chopped down like a tree). If they have been chopped they are no longer able to absorb nutrients from her food. The damage always happens at the top of the intestine first.

Remember that her small intestine is about 3.5 times longer than she is (so about 10+ feet) So by the time she was showing symptoms and losing weight, her entire intestine had been damaged.

Anyhow the villi do repair themselves once you have switched to a gluten free diet. It takes 1-12 months for adults and with kids it..s a much faster recovery. Needless to say this needs to be treated as if it were a life threatening allergy because the effects of a glutenning can lead to sever and debilitating diseases including but not limited to an array of other autoimmune disorders and lymphoma.

i too just use the word allergy to people as well. they get that so much better.

love this description though, and have emailed it to those that need it, and posted it to my blog as well. thanks so much!!

My dd has been diagnosed Celiac. She is 9, will be 10 in Sept.

Both sets of bloodwork have came back positive.

We are waiting to have colonoscopy and endoscopy, June 14 at Vanderbilt Childrens.

Her bio dad doesnt get it, and has a friend who is a doctor and also has celiac, telling him that it isnt that serious, that she can still have gluten, etc.

I plan to start a ROCK group here in my area, and I will have ppl come and talk, and I also want to have all her grandparents, etc go to a meeting with the nutritionalist together.

How do I get him to take this seriously, he doesnt listen to me, and now this doctor friend isnt helping either.

please keep this thread going, and any one else with thoughts please chime in.

i cant swap my dd over to the diet until after her colonoscopy and biopsy, scheduled for june 14.

we live a very busy life right now, so eating out is sadly a regular for us.

all the tips/links/ideas you can share are most appreciated.