vampella

So Emmah went in for her regular height and weight this week and she's doing great. She's been gluten free for 10 months now and hasn't been sick a day since(aside from my screw ups) She's back on the growth charts, following her own curve and is between the 10th & 25th %. She's almost 4.5 now and she's 30 lbs and 38 inchs tall...yay Emmah

Anyway my reason for posting aside from being so happy that emmah's better is that her Dr was telling us we should think about one day going back on gluten and re-doing the TTG. He said he referred a boy to gastro with a neg TTG and they said there was NO way he could have celiac with a neg TTG, like they did Emmah. Well the mom wanted to know what was going on so she put him on a very high gluten diet and waited 3 months and re did the TTG it's now abnormal and he's going back to gastro (for me it's a big I told ya so to the Dr because I told her test can be wrong and she argued with me) I know we've all heard these stories before but I though this might help someone new to the board that is having a similar problem.

Oh and another in your face for the gastro who told me Emmah doesn't have celiac she most likely has a wheat allergy....Emmah was clear for wheat, rye, oat, barley, cats, dog, rabbit and everything else under the sun. Also that doctor(allergist) totally agreed that the TTG was inaccurate...I've had a lot of in your face Ms.Gastro lately....too bad I can't tell her that!

Anyway, I hope all your munchkins are happy and healthy

www.kyledine.com and www.Lame Advertisement/kylepnut

I don't know if it is a symptom but my daughter didn't get her first tooth until she was 17 months.

my daughter was delayed in both weight and height.

I think frank is a great person. Your very lucky to have someone that is willing to do that for your family

I'm totally freaking out about easter. This is my first and I'm scared. I don't know what to do, I think DH & I are going to thestore to call all the companies tonight.

What first comes to mind for me is, it's only been 5 days, give it time.

Secondly, have you called and checked to make sure there is no gluten(wheat, rye, oat & barley) in anything you are giving. They don't always lable these things. this I learned about a month ago when we went to buy a chilken and rice soup and aftercalling because the lable showed no gluten in the ingeds, there was infact gluten in the soup.

There is gluten in almost everything. paints, play dough?? cross contamination? Don't let doctors bully you out trying things like gluten-free because it will not harm your child to go gluten-free. Dr's don'tknow everything and no test is 100%.

If you're going to go gluten-free, you have to give it for some people months.

I hope you can figure out whats goign on with your little one, good luck!

Welcome!

I have mixed feelings about Enterolab. Dr. Fine hasn't published his research yet, so most doctors will not accept it for a diagnosis. There are mixed feelings around here. Some people love it, others question its accuracy.

Dietary response in my opinion is the best indication of whether you are gluten sensitive. However, if she's still eating gluten, personally, I'd have the blood test done. I'd try out the diet no matter what the result of the blood test.

The reason I'm writing in is to tell you there is gluten-free pizza. My daughter and I like Amy's, but we doctor it up a bit with more cheese and sometimes other pizza toppings.

There is also gluten-free frozen mac and cheese. I've also made homemade mac and cheese with Tinkyada Pasta. She won't be able to tell the difference.

I agree fully with Carla. I'm on the mixed feeling fence. I did put out money for the gene test, even though my daughters ped say's they don't know all the genes that cause celiacs and such, I did it for me but then, I still had questions. MY daughter 4 yrs doesn't have an "official" dx BUT we do KNOW 100% she has celiac disease. She was ill and hasn't been ill a day since going gluten-free *unless I accidently gluten her* which has happened a few times.

My daughters both like Amy's pizza jazzed up, home made mac & cheese with tinkyada pasta, homemade chicken fingers and fries. we also make pizza with kinnikinnick pre made pizza crusts, we make tortillas with food for life brown rice tortillas.

The best thing is to call when you are at the store to buy. We use kids colgate 2 in 1 toothpaste & mouth wash bubble gum flav. , it's gluten-free. It's the only one I've asked about. we're in canada also.

i'm assuming there must be more to the letter than what you printed? what you printed does not say that she has a problem with gluten----just that she is predisposed to it-------almost everyone has those genes.

Oh yes there was more.

I think what the ped meant by false negitives was that there is a chance for lab error, missing a gene.

here is what it read

"Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe."

I'm so glad I put her on a gluten-free diet.

I was told that there are false negs by my ped in dna testing for this and that they haven't identified every gene that contributes to celiacs, is this true? either way, I'm happy & have a letter from enterolabs stating that she has a problem and needs the gluten-free diet, so there MRs. GI specialist.

I feel like there is a huge weight lifted off my shoulders!!!!!!!!!!

YAY

thanks for listening

Char

We just do one cake, we just had our first gluten-free birthday last month and all went well. The key for the children that aren't gluten-free is lots of icing, thats the best part anyway! I would also recommend you try one at home first, the first 2 I made were not so good, a ctually, they were just plain bad LOL.

we used Celimix chocolate cake mix for the party & everyone loved it, I haven't tried different mixes. aside from their white cake which I say STAY AWAY FROM...eeeewwwwwww!

anyway, good luck. I'm sure all will go well.

what a sweet response

thank you for that

i was expecting to get flamed on here, but i just had to get it off my chest

it is so disheartening that here i was trying so hard to learn more and for it not to be appreciated, let alone turned away and be accused of not caring, i just can not and will not take that

i am sure i did push her "mom guilt' buttons, but honestly, someone needed to for her daughters sake. the child is only 3 and the mom is gonna have to learn to deal with people better or she is never gonna get anywhere.

No flamming, you did what you had to do. maybe tell the mom once she calms down, if she'd like to bring her child back, she's welcome to but she has to work with you, not against you??

Sounds like you had a bad afternoon, I'm sorry!

does your child's school require that you provide a doctors note for proof of diagnosis, along with other important information?

No, they don't & thats great because not everyone has official dx's. The tests for celiac's aren't very good in children & a lot of people are diagnosed by trying the diet.

No school should ask for proof IMO, I highly doubt that anyone is going to lie about their child being ill and needing and epi-pen or special diet.

Strawberry, the more you post, the more it sounds like a possibility that the child is getting contaminated at home, too. It sounds like this is a new diagnosis ... the mom won't answer questions? Is this because she doesn't know the answer? Why else wouldn't she answer them? If it were me, I would have already educated you about Play-doh, pasta, cross-contamination, etc. It's her role to be sure you understand. I'm guessing that you already know more than the mother.

You are going above and beyond and if anyone's being rude, it sounds like the mother is. It blows me away that she's upset that you are asking questions. I would be happy you cared.

I agree, I think mom is being totally rude . I also agree with her getting glutened at home.

I think you should go to that meeting, I think you should take from it all you can but remember doctors don't know much about this!!

They don't have to live it, they know the medical*sometimes* and that's it.

MOM should have educated you yes, when I took my daughter to preschool the day we *thought* she had celiacs I told them everything, I made play dough, told them about paint, soaps, CC and so on.

Even after the educating and talking until I was blue in the face they still couldn't get it right, they would use her hand washing towel to wipe the table & then dry her hands on it. I kept telling them, hey look there is something happening that she's coming home sick & I was told " well I can't watch her the whole time, I wipe the table with her towel and then her hands. She was told my daughter wasn't coming back.

anyway, I wasn't flamming you, I THINK YOU ARE GREAT FOR DOING THIS, researching & caring.

I hope mom steps up to the plate, for her child's sake.

My daughter has been gluten free for 5 + months now & I still come to these great people for advice, I don't know everything yet, I've even screwed up and glutened my daughter by not reading a label or calling the company that time I wanted to buy the product I bought only 2 weeks before.

I ramble a lot, sorry, if that made no scenes

Thank you for saying this,

the mom seems to think i should be an expert on celiac and know just as much as she does and never have to ask a question

i know she is stressed and frustrated...but gosh, i am trying.... ya know?

I have to say this and others can flame me if they like.

,

you have a young child in your care that needs you to be an expert on celiac's . I kinda feel as if you are coming off a tad rude and put out by having to research this, *remembering I've had problems with my child's preschool* so if I am reading into this just ignore me. however the mother also should've educated you on this, given you websites to visit as well as sat down and explained to you exactly what you were dealing with.

She as the mother need to be the expert & she needs to educate you & your staff about celiacs, what is & isn't OK.

like I said I've had problems resulting in me pulling my child from preschool, so I may be reading into what you said.

until you've had to live it you will not understand, but, by coming here you made your first step on keeping that child safe while in your care. Good luck. I hope the mother becomes a better educator for her child's sake

So enterolabs did get the tests yesterday. yay. Does it really take the 2-3 weeks to get the results????

it's just too darn long to wait.

She also said in her letter that she was against the gluten-free diet LOL I just laughed and said good for her.

Her enterolab gene test should be arriving at the lab by 10:30 this morning.

Wish us luck.

Also someone wanted to know how much the shipping cost me to send it back, it's was only 33.81 for over night from Manitoba Canada to Dallas TX.

We had her monthly weight and height again yesterday and she's gained another 1/2 lb. She's now 28 lbs and 37 1/2 i nchs tall at 4. YAY EMMIE!! That's like 5 lbs or so thus far & I think 2 inch's.

Also, Emmah's Dr got the letter from that horrible gastro and he laughed at it very hard because I had seen him the next day fuming angry & told him everything that happened.

She told him which he found funny as hell that I DIDN'T know why We were there, not her *ya OK*, and in the top of the letter that the IGA levels were fine but go to the bottom of the letter and it Say's well I don't know what her iga levels are.

She also went on to cover her ass, she said" this does not mean Celiacs will not develop in the near future"

He also told me that in her letter that she was saying the reason she believed emmah didn't have celiacs was because firstly the neg ttg & secondly no indented buttocks. remembering she's already be gluten-free for 4 months before getting to the gastro. he said she was going by "old" symptoms from 20 + yrs ago. before tests were more accurate. he said children who had indented buttocks and such were so far gone by the time they were dx'ed that they had these symptoms which we rarely see now since getting the ttg and parents awareness. she was a weirdo and I LOVE how she covered her butt!

Emmah's been gluten-free for 5 months now & doing great.

Anyway, thanks for all your support, I don't know if I could've done any of this somewhat properly without you.

Just remember that reading lables is GREAT but you have to call thhe companies too. I found a soup that the ingreds said was gluten free but upon calling the company it was not.

So just be careful.

Good luck

<---------- what do you think? It's a purse. I hope it tastes as good as it looks.

I just can't believe my youngest is 4 already!

I never though about horses, my uncle owns a farm and we go out all the time and feed, ride and clean stalls. gloves and mask it is I guess.

I might have to give into my husbands whining and go on a trip to the US for spring break for cereal LOL

so Emmahs tests from enterolab are in the mail. I cant wait to get them. and then the results.

That's so great, congrats.