vampella

sorry 25.0 and 25.2 but yea it's a gain

So emmah had her first*small* lol BM since starting the gluten-free diet. I AM SO HAPPY TO SAY..IT WAS 4 LITTLE HARD NUGGEST..*sorry if I gross you out*

I have seen a huge change in her. she is back to my sweet little girl again. sure she has her moments but I SWEAR it's not 24/7 like it has been the last few months. She's not napping during the days again. she's not falling asleep before 7pm she's being told at 9 pm to go to bed *when she doesn't have school* and not waking up unil 9am. she hasn't woke up in the night to crawl in with us or anything for 3 days and see's been up alot on the last 2 months. I have not heard one word about her tummy or legs hurtting. she's starting to play again with her sister rather than just being all whinin' and screamin'. I will wait for a few more BM to start saying her BM are all normal now but SO FAR..Sooooo Goood!!!

Thanks for all your advice, I am so glad I found this site.

Char

Also I started weighing her yesterday I weigh her every morning starting yesterday 3 times to make sure it was accurate. yesterday 27.0 and today 27.2 wooooooohooooooo

Because they think the diet is so damnably hard, no one will actually stick with it. There's plenty of evidence to show that many people don't stick with it - but a lot of them aren't getting a lot of support, I think, and the ease of sticking with the diet increases every year.

I've gotta say, I have only been doing the diet with Emmah for 4 days and It's more work but it's not hard. you do what you have to do to keep yourself or your child healthy. I does take time to get into a routien though. I am making soups and freezing them...cooking past and freezing it. I am gonna make a weeks worth of gluten-free foos's on sundays, stuff that I can freeze and that will make life a little easier.

The man at theGF store here told me that making bread was hard and told me to start with buns so I will do that but I am waiting fo rthe weekend to attempt it. One thing emmah doesn't like is eatting toast. she wants a slice of bread not toast but the store sell only frozen I understand why but it's kinda a pain in the butt.

So far so good. Wish us luck, we are leaving right away to the Dietician, I hope he can teach me a few things. 3 1/2 year olds are SO picky. Quick question...peanut butter, is that safe or do I have to get gluten-free stuff. I don't have any right now so I can't check the jar plus I would like to know if I should stay away because of CC.

Char

Thanks for the info everyone....I now have a question that I am panicing about.

I made Emmah rice crispy squares the other day with nature's path organic crispy rice gluten-free cereal and mashmellow and vanilla. After reading a tread about preschool snacks and some said watch marshmellows I ran to the marshmellow to read it. *MODIFIED CORN STARCH* is this safe did I accidently give Emmah gluten without knowing? OMG There are so many thing to learn. I knew alot going in but there is a HUGE amount I still don't know. I hope someone answers about the modified corn starch if not it's ok. I have an appointment with the dietician (sp) tomorrow afternoon. Geez, now I feel so bad.

Char

I made rice crispy squares (gluten-free rice cereal) for my 3 1/2 year old Emmah and I used marshmellow that said modified corn starch...IS THAT BAD? Did I give her gluten by accident. OMG.

I wouldn't have ever relised it until I was reading a tread and the one lady said to watch out for mashmellows.

No,no. Emmah has already had the blood work done. Guess I didn't touch on that point earlier, sorry.

Right now we are just waiting to see what the results are when they come back from the lab. We didn't go gluten free until a week after her blood was drawn for testing.

Char -

I am certainly not at all suggesting you would harm your child; I do want you to know I understand what it means to be in the throes of worry. It's frustrating and it can be unrelenting, especially when it comes to your children.

However, you meantion that "gluten-free will not screw with any other test the GI might want to do" - that statement is incorrect if you are talking about the TTG test. If your child has been gluten free for a week or two there's a significant chance it will return negative. That's acc. to Celiac literature.

I think you are very smart for pursuing the Celiac avenue with your child, particularly since you said there's a genetic familial link...but I do think you also need to listen carefully to what your doctor says. Not all docs are bad. There are a lot out there that are good and I would really talk with them about your decision to create a gluten-free diet for your child immediately - the doc may have some important advice on that.

AK

You are a life saver. Thank you so much. What a great idea the great pumpkin. I usally throw them out and they get mad...much better idea.

Thank you for the list!!!

I checked with thesse companies in September

All tootsie products are gluten free This includes blow pops!

Nestle Gluten free products:

Baby Ruth

bit-o-honey

butter finger

butter finger bb's

chunky

goobers

milk chocolate

nips

treasuers

turtles

Oh-Henry

Rasinets

Sno-Caps

Wonka (also nestle)

Bottlecaps

gobstoppers

laffy tafft

lik-m-aid fun dip

mix-ups

nerds

pixy stix

runts

shockers

sweetarts

tart 'n tiny

Nerds rope

Also all ready to drink milk, syrup, hot cocoa, and juicy juice flavors.

Gluten Free M&M products:

All M&M except for M&M crispy

All skittles bite size candys

All Starburst Products

All Milky Way producs except milky way bar

All Dove Chocolate produces except dove milk and dark chocolate coverd almonds

munch bar

All Jelly-Belly jelly beans are gluten free (their modified food starch comes from corn)

I'm stealing my sisters idea (her DD does not have Celiac she just wanted to limit the candy) She goes through the candy with her daugher and lets her keep a few of her favorite products. They leave the rest of the candy out for the "great Pumpkin" who takes candy as a trade for a toy. I think this will be an easy way to get the "full of gluten" candy out of my DD's mind

I am at this point not waiting for the biopsy. I have already gone gluten free and I am already seeing differences in her. I do understand it could take a long time for her D to get normal. the reson I am not waiting for the biopsy is because we have a HUGE anesthesiologists shortage here right now and they couldn't tell me how long it would be *if* they did one. The diet eill be proof enough for me.

She has had the blood work done already. I actually just called about 30 mins ago and the young girl said well her file is on his desk, he could be writing the specialist or have the test result he should call you in the next few day....GIVE ME THE RESULTS!!!! LOL

Taco's have no gluten in them? I would have though gluten. I take Emmah to see the dietician tomorrow. I'm doing this all myself so I figure the more info the better.

Thank you so much for the book and website I will check them out right away.

THANK YOU SO MUCH

Check out the cookbook "Saving Dinner" by Leanne Ely - it's a great book. It wasn't intended to be a gluten free cookbook, but many of the recipes are naturally gluten-free. Also, the website www.eatingglutenfree.com has a lot of "normal" recipes (like soups, main dinner dishes, etc.) that don't require a lot of strange ingredients.

I would also suggest that you sit down and come up with a list of all of the things your family eats now that are already gluten free (baked potatoes, tacos, etc.). That will help you a LOT as you start coming up with a gluten free menu.

If you are looking for any specific recipes, let me know. I do a LOT of gluten free cooking and consequently have a lot of recipes

Good luck!

By the way, if you intend to have her blood work/biopsy done, she must be eating wheat for at least 3 months before the procedures are done. So don't take her gluten free right now if you want them to be accurate reflections of what's going on. On the other hand, if you take her off of gluten and all of her symptoms go away, I'd say you've got your answer without the expense of a biopsy, haven't you?

So halloween is soon approching and I am A VERY new gluten-free mom and I have no idea what candies are gluten free I did get a website from celiac canada on foods just haven't checked it out yet.

What candies are safe for her to have and which d I have to worry about CC with?

I know...I ask alot of questions don't I....SORRY

Char

So I called the peds office again today to see if the test results were back and the young girl said she found emmah's file on his desk.

she said he could be writing a letter to the specilist again or the results could be back, he will call me in the next few days if the results are in...I AM GOING CRAZY...give me the results already. NOW I wish I wouldn't have called...eeerrr.

Hi...I would agree with your doc that the TTG is the most sensitive test going.

My number was only VERY slightly elevated - I mean like by one point - and very few gluten-like systems. My doc saw it, decided to pursue a biopsy and sure enough the biopsy showed the very beginning of Celiac Sprue. She could have totally written it off, but she explained that the TTG is super-good now. They're refining it.

It's called the TTG Iga-antibody test.

I think you should trust your doctor, don't go spending money yet on Enterolab.

AK

HOWEVER, if you've got your child on a gluten-free diet - that test is absolutely not going to come up positive and it's going to skew the results. You have to be careful just putting your child on the diet before really getting an accurate diagnosis - you'll read that same comment in any trustworthy literature on Celiac. I have three kids and I'm pretty knowledgeable about the whole diagnostic process...I have it and my doc at the hospital said there's a good chance one of them could develop it, so we've worked out a plan where we TTG test them every 3 years. This is the recommendation from the Univ of Chicago Celiac Center as well...

I have to say this,your expeience is rare in my experiences.

Even my grandmother who had sever damage from celiac disease was tested NEG 6 times and a biopsy was incon. The only way they found out she was celiac was to break on of her blisters and test the fluid. However that is done. my brother and 2 of his children have celiac disease. first tests neg. I know many children that have tested neg in the past and had celiac, I am not saying it's not accurate in adults but in children the evidence seems to be weighing the unaccurate way.

Trust me I am not going into this knowing nothing, but I will NOt sit buy while my child dies.

Emmah lost over 4 lbs in less than 2 months, she hasn't grown since she was 18 months old and has had D since I can remember going on average of 4 times a day . she will be 4 very soon and is 25 lbs. there are many other symptoms but I think I've explained myself enough.

I decided to do the gluten challenge AFTER her blood was drawn for her second testing. I am awaiting the results now.

I will also say her first test was done before the weight loss and worsining of symptoms and her doctor said her body may not have been ready for it yet.

I was also told by many that if she does great on the diet there is no need to put her back on gluten to have a biopsy done to confirm what I already know. I understand that you have celiac but it seems to be a different playing feild in children, a test that is sensitive for you may not be as sensitive in children.

I am not putting my money on entrolabs yet but one day in the future I may. BUT the only *true* test for celiac disease is the diet ..then, I will have my results in a few months. I would rather spend a million dollars on food for my daughter than see her sick for one more second. I know you understand that.

I got a ton of help and advice from celiac canada, I didn't just jump in.

I love my kids and will do anything to keep them alive and well.

I also want to add that gluten-free will not screw with any other test the GI might want to do so I am doing NO HARM at all. Emmah and i are seeing a dietician(sp? lol) tomorrow to make sure we are doing everything correct.

Char

Alrighty,

I think my mom is hopeful but so am I so I am just gonna say I am seeing an improvement in Emmah (3 1/2) in less than 48 hours being gluten free and I mean free. I am so worried about CC I am cleaning like mad and making her foods first and so on. If I bore you I'M SORRY.

ANYWAY lol, here is emmah's diet since we went gluten free.

Monday the 16th, 6pm bowl of gluten-free soup+2 slices of gluten-free bread with cheese spread.

Tuesday the 17th- 8am-2C kids gluten-free cereal+2% milk. 10:30am 1 homemade gluten-free rice crispy square-12pm-1 1/2 gluten-free grilled cheese sandwhich(hard cheese) 6pm-1/2 chicken breast,2 scoops of mashed potatoes,brocilli(sp?) witha gluten free gravy more like a sauce(it was good we all had it)

Wed the 18th- breakfast 2 large gluten-free homemade pancakes. for lunch I think *pasta* but we will see. Everyone is sick, might be soup.lol

The differences I *THINK* We are seeing.

1-attitude is getting better

2- she didn't cry for a nap yesterday.

3- went to bed at 9pm rather than 7...not wanting to sleep her life away...did even suck her thumb at 6:30 lke she ALWAYS does. much less sucking.

4- I'm having to make eatting fun but she's eatting again. she went though a huge period where she would eat and eat and eat and then the last few weeks it's been going down and the sleeping had been going WAY up. She even comes home from preschool and goes to sleep, that is 3 1/2 hours after waking up. The one day she laid down on the play ground and went to sleep* was in tears*

5-She hasn't complained about her belly in like 24 hours. it's so great. she slept through the night for the first time in a few months last night and the night before.

I know I might be adding more to this than there is but I'm very hopeful.

I sure hope this is the answer, I was so scared she was going to die.

Thanks for listening.

Char

What I wanted to know is more information of testing and the inaccuracy in children.

My ped keeps saying here in manitoba we use the TTG and it's the most sensitive test going. I called him on it once and thats what he said. I know this is untrue but would like more info so I can throw it at him when Emmah goes back for her weekly height and weight in a week.

I haven't even told him that she is gluten-free, I am waiting until her appointment and if she's gained weight I will be like and that gain/staying the same is all because she is gluten free.

I would like to do entrolab testing they got back to me yesterday about cost and shipping to canada. it 369+ 20.00 for shipping outside of the us and then i have to ship it back which she said would be very pricy. I do have to e-mail her back because I am sure she quoted me in US funds but either way I can't afford that right now. I'll tell the GI when I see him that she is gluten-free and she is NOT doing a biopsy at this time if ever.

Any help with the test amo would be greatly appreciated.

Thanks again

Char

Thanks so much, it sure help to hear that I'm not the only going through this. I also wouldn't wish it on anyone!!

We started the gluten-free diet last night, it's not cheap but it's worth it. We did find out from the man that owns the gluten free store here that we can claim her food on our income tax return so that will be a help.

If anyone has any simple gluten-free recipes please share!!

Thanks

Sounds like Emmah has it to me. My son had very similar issues and went thorugh testing 3 times. The first 2 were negative and the last was inconclusive. We put him on a diet trial and the results are amazing. Remember that most kids under 5 often have false negatives. The testing is not reliable for them. I hope you get a definate answer, but if you don't, please give the diet a try. It has made our lives so much better. Hope she feels better soon.

I don't know if this sounds completely stupid or not but Emmah went gluten free yesterday, we had gluten free soup with toast and cheese spread for supper last night & this morning gluten-free cereal and she hasn't complained about her belly hurtting even once yet. I know I am probably just hoping it is working already but would it make her feel less bloated already?

Thanks

Char

My son was off gluten at 6 mo just out of suspicion then at 12mo it was reintroduced by his misinformed dr and he had a horrible reaction, then at 13mo, after a mo gluten free he had a biopsy that came back possitve, this was after two negative blood tests.

My point is that if you take her off gluten there is still a window that they can do a biopsy if you want to know for sure, even though improvement on a gluten free diet is pretty telling!

Enterolab, I have a question about this place. Do they only do testing for americans or can people out of the country also have testing done trough them and also how much doe sit cost. I'm in canada.

Thanks in advance

Char

My only advice would be, after you get out all the gluten and your daughter gets better, don't put her back on it to make the doctor more comfortable with the diagnosis!! Did she have positive blood work? If so, I'd go by that alone. If not, I'd see what her dietary response is, but I would not make her sick for the biopsy. That's like having a patient healing from lung cancer go back to smoking to see if it's making him sick!!

Good luck!

Welcome!

She had one negitive this past spring but now that we have more gluten in out diet things have got worse. We are waiting on results from a second blood test, should be back by next week. I understand what you are saying, Thank you. I will tell the docotrs that if she's responding to the gluten-free diet she will not go back on just to do the biopsy. If this is working for her then it's an answer that she is celiac and if it doesn't work then we also know it's not celiac. THANKS SO MUCH

I am sick of waiting on my daughters doctors, I am taking out all gluten as of right this second. Does anyone have any advice for me? I could really use it. I will be telling my ped tomorrow that if the GI specialist wants a biopsy then she can go back on gluten for 6 months but for now as her LOVING CARING mother I am doing what I hope is best for my child and trying this NOW.

Char

Hi, My name is Char.

I have 2 beautiful little girls.

Leigh-Ann 61/2 and Emmah almost 4. I had both my girls tested back in the spring for celiac because it runs in my family. it came back negitive for both of them.

My 4 year old Emmah has had Chronic diarrhoea since she was little, light color, floats...smells SO BAD and she goes 3 or 4 times a day sometimes. she's had failure to grow since she was about 18 months. She's going to be 4 soon and is 26 lbs and 35 inchs tall. she's lost 4 lbs in the last 2 months. her diarrehoea has gotten worse, she gets hives, leg pain gags on pasta type foods and so on. It's a long story I'm sorry I wont write it all (too long) her doctor is so great.

She goes every week for checkups and keeps loosing weight, the doctor thinks maybe he tested her too early for her body. he thinks her body is now telling us that it is time to re test. She has had so much blood work, fecal samples and this friday had 2 abd. X-Ray's because when he felt her tummy all he could feel was gas. Turns out her tummy was FULL of gas. I'm an animal health tech and know how to read x-rays so when we were taking them back to the doctors from the x-ray clinic I had me a look lol.

I've never seen so much gas in one small being before, poor girl. The doctor was writing up a referal to a GI specialist at the childrens hospital. He said depending on how the ttg test and the 2 other celiac tests come back the GI specialist may want to biopsy either way. I am hoping for that. If all these celiac test come back negitive I am going to put her on a gluten-free diet and see how that does. I know in my heart that it's celiac but it's proving it to my brain. Last night my parents invited us for dinner (spagetti) and poor Emmah's couldn't sleep she was put down at 8 and she was down here by 8:30 saying her tummy hurt and she couldn't sleep. Her tummy was so big and hard and hurt so bad last night she couldn't get to sleep. SHe was up until 11 pm with me rubbing her belly. That really conformed it for my husband.

Does this sound like I am on the right track? Does anyone have any advice for me for what I should request from the GI specialist?

Thanks in advance.

Char