Hi I Am New With Alot Of Questions

[AmyandSabastian]

Hi my name is Amy. I just found out my son who is 6 months old has celiac disease. I am having such a hard time dealing with it. I am trying to learn as much as possible here. But a few quick questions. I went shopping with my list in what he cant have. All the baby teething items have gluten in them and I am looking for other things to try. Mainstream would really help. Does anyone know if any mainstream cereals or cookies or chips he can have? I bought a box of Crispix and Pops and looked it up and down and I cant find any gluten in them. I know I might be missing something. I am sure they name it all different types of things. My husband and I are going gluten free as of Aug 1st. Just to give us some time to learn and also to make the house gluten free without wasting so much food. I want my son to be able to eat anything in his own house. I guess I am looking for support as well as some help with mainstream items. I have the order book for gluten free pantry and plan on placing an order soon. I just wish we knew what tasted good before and what kids liked. I also just bought a bread machine so I can make my little man some bread. Any help would be appriecated. I look forward to getting to know all of you on my quest of knowledge.

Amy and Sabastian

[angel-jd1]

Corn pops are not safe, there is a chance that you got ahold of an old box, but as of Jan 1, 04 they were adding wheat to their ingredients.

Most of the cereals that are mainstream and "ok" are very small. For example Post Fruity and Coco pebbles are ok, but they are pretty tiny for a 6 month old.

There are some cereals made by EnviroKidz that are larger and very yummy!! I love the peanut butter panda puffs Open Original Shared Link They also have a gorilla munch Open Original Shared Link which is much like Kix. You might try those.

As far as finger foods for little ones go you might try:

Quakes rice cakes (love the carmel corn) Just read the labels!! not all are safe

Frito Lay chips are a brand in which you should be able to read the label and see clearly if it contains any gluten products. However some people worry about cross contamination with this company.

Mainstream cookies are pretty much a dream! ha But you can find some great one at the health food store. Mi-Del makes a GREAT animal cookie/cracker. They are WONDERFUL!! As far as the other cookies go, I have found it easier to just bake my own chocolate chip etc. They taste 100% better than store boughten.

You could also make some little gluten-free pancakes and give him some of those to chew on. Minus the syrup of course.

I'm sure others with kiddoes have some better ideas, but wanted to let you know about the corn pops!!!

-Jessica

[tarnalberry]

I believe Crispix contains barley malt, or some othe variety of malt. It's right out.

[AmyandSabastian]

OK I have already messed up!! This is soo hard. Moms I need your help. What would you suggest I could get or recommend family to keep on hand for him to snack on and learn to eat with his hands?

[Boojca]

Hi there! If it makes you feel any better, I am new too. My 2 1/2 year old was just diagnosed last Thursday. I've been doing a TON of research, along with my mother, and utilizing this board. Another good thing is contact the Celiac Association, the woman who answered the phone also has a celiac disease 2 year old and was GREAT for me to talk to. Here's the run down I have so far (gluten-free means gluten free):

All baby/toddler orajel products: gluten-free (I just called this morning)

Kirkland/Costco brand boneless/skinless chicken breasts from Tyson: gluten-free

Frito Lay has a GREAT list on their site of all their gluten-free chips, including Cheetos! YIPPEE

Jif Peanut butter

Breyer's and Popsicle, good humor, etc... gluten-free unless PLAINLY says any of the offending ingredients

Ben & Jerry's Ice Cream (thank the good Lord!) unless plainly says othewise

Any Kraft product (including Oscar Mayer) will indicate clearly

Quaker rice cakes

Mi-Del animal crackers are really good, your baby will love them

Ener-g (or something like that...it's in the gluten-free sections of the health food stores and it's orange and white packaging) has a chocolate chip cookie that tastes JUST like chips ahoy

Do you bake? King Arthur Flour has a whole line of mixes, flours, etc... that were developed by their researcher, whose daughter is celiac disease and taste-tested them all (so, these are kid-approved) Go to www.kingarthurflour.com

My son likes the envirokids Gorilla Munch (it REALLY does taste just like Kix) and the rice crispy-like bars (they are REALLY good)

Heinz ketchup is ok

Ore-Ida french fry products with the UPC code that starts with 13120 are all ok

Mott's applesauce

fresh fruits and vegetables (I'd buy a food mill or something so you could make your own babyfoods if you can't find any that are gluten-free commercially)

BTW, bread macines from what I've heard are not that great for gluten-free bread making. You may want to reconsider that. I just made my first loaf of gluten-free bread yesterday, and it was so easy I think it would've been more work to use a bread machine! You only have to let it rise once, and there's no kneading, so it's really just one rise cycle and then it's like baking a cake or something like that. Pretty easy.

I will post more as I get them.

Hope this at least gives you some hope! My best advice, take the products you THINK might be ok, write down their toll-free number (Or look them up online) and give them a call. My experience has been that this is a common question and the operator you talk to will be able to answer your question. I found it best, when I call, to say the following:

"My son has just been diagnosed with Celiac Disease (the word disease makes people listen) which means he cannot have wheat, barley, rye, oats or any by-products of those things. This is also known as an intolerance to gluten. Does XX product have any of those items or byproducts?" And so far every company I've called actually has a list of either their gluten-free products, or which products DO contain gluten (which is usually when only a couple of their products contain gluten)

[tarnalberry]

Don't worry too much about messing up. I've been doing this for many months and still mess up on occasion. It takes practice. You'll get there.

[AmyandSabastian]

I am really looking for some support. I just got off the phone with R.O.C.K. and with no luck there is no local support groups. So far every place I have contacted has no local groups. So I am really going to rely on this site to help. I am going to the bookstore to buy a few books recommended and read the cover to cover. All of my feelings are just so overwhelming.

Let me start at the begining. My son at birth was always cranky. He was exclusivly breastfed. He was "colky" from day one. He has such probelms with my breast milk and after I cut everything from my diet I decided to put him on forumla. Little to my knownledge it contained gluten. No why would they put it in an infants forumla?????? Well after 2 months of a screaming child, pooping probelms, swollen belly, horrible gas and gas pains, every type of tummy medicine, I knew something else was wrong. I then saw 4 different pedi that treated me like a dumb first time mom that didnt know what I was talking about and excpected a baby that didnt cry. I then called a close family friend that lives 3000 miles away who is an internalist for help. After an hour of me crying telling him all of my son's porobelms he said without a doubt take gluten out of his diet for 10 days to see. Changed his formula and took him off of his oatmeal cereal and wala a happy normal baby.

That was 3 weeks ago. Since then I have gone back to my normal pedi and told him our clonclusions and he laughed in my face saying babys cant have celiac disease. And refused to do the blood work. We went to dr after dr with the same reactions. I have had several mistakes with giving him gluten and each time within 30 minutes he is screaming in pain and his belly is swollen. So I am not putting him through the pain of a biopsy right now. I know.

This whole time I blamed myself for my toxic breastmilk, and shoveling oatmeal in hsi mouth daily. I wonder when I am ready for my second child if they will have celiac disease. I worry about him eating out with friends are just feeling different for the rest of his life. With no doctors to support me except one 3000 miles away over a phone I am not sure how I am going to do this. So any help, words of wisdom, anything would be great. Thank you for at least reading my little vent..

[angel-jd1]

You should feel blessed that they discovered what is wrong so early in his little life. I was born with colic and wasn't until 24 years later they discovered what was actually wrong!! Be happy that your baby can be healthy now!!

Things seem very hard at first, but this board is a great support. Visit often and ask questions. You are on the right track, you are just very overwhelmed right now. That is TOTALLY normal. Keep doing what you are doing with the research, research, research!! It will make you feel more confident and calm with the diagnosis.

I don't have any local support groups near me either, but use this board and another to have many questions answered and just support when needed.

Things will settle down, you will get a routine and you will successfully find foods to give your baby. Everything is new now, just relax and learn all that you possibly can. You will do great!!

-Jessica

[Boojca]

You are your child's best, and only, advocate. The doctors say no? Then point blank ask them what's the harm in testing? If it's no, prove me wrong. Tell them you want the TTG test, and you want it sent to Mayo Clinic, and you want it NOW. It's a simple blood test and gets the ball rolling. Go over their heads. Are they affiliated with a hospital? Go the the medical director to complain about malpractice, go to the president, the board of trustees, whomever you can until YOU get what you want. Trust me, the word malpractice goes a LONG way in healthcare these days. Contact the Mayo Clinic yourself, if you have to.

Just so you know, the biopsy is nothing. My son just had it last week, and they knocked him right out for it. And as soon as he "came too" was back to his old self, playing and everything.

[nettywills]

Hi

I fully understand where you are coming from and also looking for some support.

My family's history. I am 34, I have a 5 year old daughter and 13 month old son. Currently my daughter is being gluten challenged hopefully with a biopsy at the end of 6 months. I have an appt. with a GI in 2 weeks hopefully to get some answers. Currently my son is gluten-free until my daughter and I sorted out one way or the other.

Your son sounds so much like what my son went through. Started breastfeeding but had to supplement within 1/2 hr. Finally fully formula. But he screamed and screamed. Stomach bloated, gas which wouldn't move and flatulence that could wake a horse if not for the sound then for the smell. And then he started refusing his bottles completely. I tried every formula on market and finally settled on soy. Suddenly all was right with the world. Seems he's lactose intolerant.

When we started the cereal we were back to throwing up and gassy. Notice malt in ingredients. Since then he's had nothing but rice. Whenever he does have gluten he gets gassy and spits up/throws up a little and typically within 24 hrs has a very loose bowel movement.

His first ped. thought I was a nut case. I walked out of each checkup crying. "There was no way a baby can have celiac disease." I beg to differ with the way my son reacts. Our current doc says to keep him gluten free until we find out the results for my daughter and myself.

It is a tough slog. It is scary and overwhelming but it does get easier. You get used to what you can and cannot have but it is always a teaching/learning curve. And the best thing is he'll grow up knowing the life and wont know what he's "missing".

Mi-Del animal cookies are good tasting and great for teething. Another product I found for teething are Hot Kid "Baby Mum Mum". My son loves them and they're great for taking out as they are packaged in individual packages of 2 biscuits. But basically a basic diet of fruit, veggies, and meat are the easiest.

I've also heard that bread machines aren't great unless you get one made for gluten free breads - gluten-free bread dough is extremely heavy (typically). There are some good recipes out there for some breads which are pretty good . Kinnikinik (sp?) has some good bread products; as does glutano and enviro kids does make some good cereals.

Good luck with it all. You'll get there in the end.

Annette

[mat4mel]

I don't think there is anything wrong with not doing a biopsy. He is obviously better gluten free-- go with your instincts. And a biopsy is not without risks; although small, it's not completely safe.

You could always have stool testing at Enterolab, which doesn't require a dr's prescription. I would email Dr. Fine at enterolab's website and ask if you son is too young for those tests. But you know your son better than anybody, and if you noticed a direct correlation w/ gluten, then I would trust your motherly instincts.

As for your next child-- I would stay gluten free during the pregnancy and breastfeeding, and then delay introducing gluten for a while, atleast a year I would think. My 2 yr old has Celiac, and I am 29 weeks pregnant, and there is not much information on this, but everything I have read says that this is the best thing to do for the next child.

Mel

[dana-g]

Amy, welcome to the message board! Please know that you aren't just undertaking a "diet", you are makiing a major lifestyle change, and it can't possibly happen overnight. You are only human, even though we as moms are used to having to be super=human, and you have to accept that you are going to make mistakes at first! But you are on the right track! How lucky your boy is to have a mom who actually got a diagnosis for him at the tender age of six months! We who have spent time on this message board have heard our fair share of sad stories regarding doctors who ignore parent's pleas to test young babies for celiac disease, while the babies get sicker and sicker, so you are so far ahead of the game! Congratulations! I have celiac disease and so does my 11 year old duaghter, and while we try to "eat fresh" as much as possible, one of the sites that has helped out a lot is:

Open Original Shared Link

It's 49 pages of gluten-free mainstream foods. And this site you are on, Celiac.com, has a great list of "forbidden foods"--check it out! Also, I found Danna Korn's book "Kids With Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten-

Free Children" to be enormously helpful.

Most importantly, remember you aren't alone...we all started out oblivious to celiac disease and had to figure it out from the ground up, too! Keep asking questions and hang in there!

[mat4mel]

Another good place with a gluten free list is delphi's celiac forum:

Open Original Shared Link

Mel

[Cait6799]

What type of insurance do you have? Do you require a referral or can you see whoever you need to? Is there any kind of a Children's hospital near you? Can your doctor friend check in her circle of doctors to see if someone knows an endocrinologist or growth and nutrtition specialist in your area?

I was given the run around too. But I tend to be on the mean side, really mean side when it comes to my daughter's health. I KNEW something was wrong with her and nobody would listen. Comments such as "I am now fully convinced that some drs graduate with C's every year, you must be one of them" have been known to fly out of my mouth after being told yet again that I was just looking for attention and needed counseling LOL.

A growth and nutritionist dr is the one who took one look at her, spent 5 minutes talking to me and said "I bet she has Celiac - let's do a quick blood test". Bang! There it was. We did the biopsy as well for confirmation but, it was worth every minute of it.

As far as your medical doctor laughing in your face, that is atrocious and unacceptable. FIND ANOTHER DOCTOR. If he/she is not taking you seriously now then you never know when they are going to let something else slip by. If there are Children's hospitals anywhere near you talk to the NICU (newborn intensive care unit) and tap them for every piece of information you can get. That's how I found my daughter's doctors, after all, they deal with the worst of the worst. Speak to ANY hospital and see if there is a G & N doctor there. Even if he isn't a pediatric doctor it's a safe bet to assume that they will know of one.

I personally took the positive results and went back to a couple of doctors that had tried to dismiss me and informed them that had I listened to them my daughter would be dead (she was literally wasting to death) and I would be suing them for every penny they had. And then some. One particularly nasty doctor had the pleasure of me showing up in his office waiting room and informing everyone who was in there of my experience. (told you I was mean LOL)

You have to understand though if these people don't take you seriously they will, and are now, jeopordizing your child's life. You would not allow someone to walk up to you on the street and hurt your child, so don't let a professional do it either.. There are so many caring, fantastic doctors out there, please dont allow them to hurt your feelings or make you feel bad.

Just for the record, I USED to be a sane person LOL.

[AmyandSabastian]

Well the insurance we have to be referred to be covered. I do have an appointment with a GN on July 26th. I will let all of you know how it goers. Until then no gluten because I know how he reacts. I also did find there is no one in my city that have even been told they have celiac disease. According to the doc that told me about my son that was the first time he has seen it and he doesnt know anyone else that has seen it either. Real encouraging.

[angel-jd1]

What kind of tests are you planning on getting for your little one? If you are planning on the blood pannel, the baby will have to be on gluten to have accurate test results.

You might want to push to at least get the blood drawn while he is still on gluten.

Turn into a "psycho mom" if you have to. Rant and rave at the doctors. MAKE them hear you. You are the only person who can be an advocate for that little one. He is depending on you to help him get better!!

Best of luck!!

-Jessica

[Boojca]

I have to agree with Jessica. Stand in that crowded waiting room and say, "You mean to tell me, bc YOU have personally never heard of this VERY common disease that 1 in 150 people has, that you are not willing to run a simple blood test???" Let's see how they move then....

You HAVE to push this, it's not something that can wait. Your baby needs you. My son is 2 1/2 and should be over 30 lbs. He weighed 23 lbs when I brought him in, do not let your child waste away. Celiac Disease destroys your small intestine and does not allow the body to absorb anything you've eaten, no vitamins, no minerals, no calories, no nothing. Far worse things can happen to your baby by not knowing this, including literally starving to death. If you go gluten-free just know that you'll have to reintroduce it well before July 26 to get an accurate blood test. Otherwise she will come back testing negative and you'll be back to square one with them thinking you are crazy. There is no reason you have to wait that long, they can write you a referral slip to have the blood drawn at your local hospital and they then send the blood out to be tested (and demand the TTG test, it's the most accurate blood test) and then the results will come back. No appointment necessary.

[ryebaby0]

Of COURSE there are people in Lafayette with celiac disease -- good heavens, I live in a dinky city in PA and every other day somebody tells me about their neighbor, their teacher!! We're everywhere!! It's as common as diabetes!

Your son will be fine. You are doing a great job, but it doesn't happen overnight. He will literally never really miss the food he never had, and 21st century children often have food allergies/issues so he's not going to be the "weird" one when he gets to school. Try not to borrow trouble; today's is sufficient for the day! There is going to come a time when you realize that you've gotten the hang of it; when you feel blessed that you had the good sense ("mom-radar") to know something was wrong and get an answer. You are off to a good start, so be gentle with yourself and try not to learn everything the first month, or your head will explode!

Joanna

[KAthyB]

Hi Amy, Hang in there! I know you are overwhelmed right now but when you and the baby can handle it go for further testing. As a mom of a recently diagnosed 18 year old who was starving to death before dx'd I think the only way to justify the demands of a gluten-free life is testing. Babies don't even know they are biopsied and I know you don't want him to go through the gluten challenge but it is worth it. My daughter is getting ready to go off to college and in order to get special food accomodations the school requires a copy of the tests confirming the dx in order to use the funds available through the ADA. I know it seems a long way off but this may come up when he starts Kindergarten. I think JELLO jigglers might be a soothing finger food for a teething tot although it has been awhile since I had a baby around. I make them for my daughter and her friends frequently and they go over well.

Good luck, God bless and stay strong with the doctors!

Kathy

[AmyandSabastian]

Well what is weird and made the doctors laugh at me is that Sabastian as you can see in all the pictures is not wasting away. IN fact his belly is soooo swollen that he was in the 110% for weight. When we went to a gluten-free diet his belly went down in 3 days and he LOST 3lbs. And as yall know for a baby is ALOT. Now he is in the 90% for weight and 100% for height so he is right on track. After speaking with the doc that dx'ed (a close friend of the family and 3000 miles away) he convinced me NOT to get Sabastian tested. That it was a waste of my time for right now and wasnt worth putting a 6 month old through going back to gluten (all the pain he was going through) and needle sticks and biopsys, wasn't worth it. And I wasn't ok with putting him under at such a young age for the biopsy with all the risks. So he talked me into waiting till he can tell me his tummy hurts before reindroducing gluten along with getting the tests done. So I am going through the emotional roller cooster ride of my life dealing with gluten-free diet.

[lovegrov]

Amy,

Your doctor was actually right to refuse to test your child. Everything I've ever read says the blood tests are not accurate until 18-24 months. Some doctors even say 30 months.

richard

[dianne]

Amy,

I think it's great that you and your husband are going gluten-free. I have a comment about Frito-Lay products. If you call the toll-free customer service number on the package, they will send you a list of all their gluten-free products. Just ask. Good luck!

Dianne

[celiac3270]

I think it's great that you and your husband are going gluten-free. I have a comment about Frito-Lay products. If you call the toll-free customer service number on the package, they will send you a list of all their gluten-free products. Just ask. Good luck!

Get the list, anyway, but to get you started, these products are gluten-free:

- Cheetos

- Fritos

- Lays

- Wavy Lays

- Lays Stacks

Frito Lays does warn, however, that even their gluten-free products are produced with equipment that also handles non-gluten-free products, such as Doritos. Sensitive Celiacs might want to stay away from Frito Lays products for fear of contamination.

While on contamination, that is good that your entire family is going gluten-free. At least at home, that'll be helpful...first off, to avoid contamination, and second, so that you don't need to check what's gluten-free in the cabinets and what isn't.....

[angel-jd1]

Nacho Cheese Doritos seem to be the only NON-gluten-free dorito. The others are fine, with the exception of the cross contamination issue that has already been mentioned

-Jessica