momof2sn

Dear Wolfie,

One of the other members on here, Cybermommy, posted a great list of toddler friendly gluten-free foods. Here it is:

Gerber Graduate Wagon Wheels

Gerber Graduate & Parent's Choice dryed fruits & veggies

I also buy products made by "Just Tomatoes"-these are mostly single ingredient freeze dried fruits & veggies (much more variety) they also have soynuts. I buy them at Central Market but here is company info so you can find how to get them in your area. (209) 894-5371, Box 807, Westley, CA 95387 Our favorites are the Just Peas & Just Blackberries. They are good to snack on like popcorn or to add to salads (Crunchies) They are great for toddlers & easy to carry w/ you. We always have in diaper bag(Church nursery knows not to give her anything that doesn't come from her bag & they clean up immediately after snacks to be sure no stray gluten containing crumbs for her to get)

Mission corn tortillas

Great Value Spaghetti Sause (have not checked all but clearly labeled)

Great Value Mozzarella Cheese (shredded)

Great Value Honey Ham Lunch meat

(I use the above 4 ingredients in a brand new, never used on gluten products, sandwich press)

(You can do the same thing substituting pace picante sauce for spaghetti sauce & add avacado & a touch of salt)

(try penut butter & banana)

Making sandwiches in the press also helps some of those cardboard like gluten-free breads with texture & taste.

Jet Puff & Great Value Marshmallows

Fritos (all flavors)

Lay's Li'mon potato chips

Welch's fruit snack & dehydrated fruits

I use Tinkinyada pasta & or spaghetti squash (the pasta taste better to me but spagetti squash is good stretcher & I can grow in garden.

Most toddlers, kids & yes us adults like to dip. Try celery, carrot & zucchini or yellow squash sticks for dippers & peanut butter or cheese dip to dip in. If your child is to young to actually eat the veggie sticks it is a great teether & they still get some vitamins from it as well as aquiring a taste for it. Remember that your kids want to eat what you eat. You are more likely to succeed in this if you model the eating habits. It took Lyndsee about 2 days after I went gluten-free to realize she can eat anything I can. Now every time I get something to eat she is like baby bird w/ mouth open . She is eating a lot better.

Oh yeah btw we also use Bar-S Franks made with chicken, pork & beef.

They are dirt cheap & toddler friendly.

The accounting and recordkeeping would be a nightmare, hopefully you have a lot of time available to set up a good accounting system and way to keep track of all your receipts. Just go to irs.gov and look for the rules, special forms and all. Oh, and it probably only is available if you spend more than 7.5% of your AGI on it, like other medical expenses.

She also provided some other great info, as you can see!

Dear momof2sn,

I have something that will help you out. I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

I just joined last week with a million questions. Everyone has been so helpful!!

Today is my daughter's 2nd day gluten free. It has been okay. I cried when she asked for pizza yesterday.

She is 21 mo. old has Neg. blood work and biopsy. But has a positive HLA-DQ8. She has also had chronic diarrhea. I say all this because, now nothing. She is not having any bowel movements. Now, she is not potty trained yet, so it is nice not having to change her mess all the time, but now I am concerned that she is now stopped up. Could she possibly just be a child who needs limited gluten in her diet instead of completely eliminating gluten?? Or does her body need a few days to get into rythm??

opy to look for eosinophilic gastroenteritis or esophagitis. We also had her blood drawn yesterday for RAST allergy tests to the top 8 foods, just to rule that out.

So, I am very familiar with the diet as I have been on it for almost 1.5 years and DS almost a year. I am not familiar with some of the items for younger kids (animal crackers, cookies, etc) b/c I make my own cookies or just stick with naturally gluten-free items like fruit, veggies & meats. I have removed all of dd's gluten-filled treats/cereals and put them in a rubbermaid container in my closet...out of sight, out of mind, I hope. If anyone has any suggestions on young kids treats that are tried & true, please let me know. I am hoping to just give her the gluten-free stuff and not mention why we are giving it to her....maybe say that I bought her some new special treats or something like that.

My daughter is a bit younger than yours.... 2 but I'm sure some of the stuff she eats is the same

Replacements for:

Animal Crackers: I use Envirokids Animal Cookies (Vanilla Flavored Marked Gluten free)

Ceareals: I do Envirokids (they mark the ones that are Gluten free) and Perky O's

Crackers: We us Nut Thins or round tortilla chips

Other than that we do things like Fruit-a-bu, Smart Monkey bars, Lara Bars, gluten-free pretzles, fresh fruits and veggies.

I use Ians gluten-free fish sticks and chicken nugets and saw that they had corn dogs the other day but have not tried them yet.

I buy Amys Rice Crust pizza and let my daughter top them off with what she likes.

Hope that helps

I am knew to all of this too. Do you buy all of these foods at your local health food store?? Or off the internet? Are there any foods that I should not waste my money on because they are nasty??

TCA.. I know you are a very strong person to have gone thru all that you have already!! Am sending up my prayers for all of your family to get thru this stressful situation. God gives mothers of sick children an extra bit of energy & whatever else they need when our children are sick. We had 3 of them, that was a long time ago..am a gr. grandmother but I remember a lot of it. Take care of yourself, and I hope the answer to Megan's problems come soon!! evie

Yes, it is possible to have celiac and still be in the 100th percentile for weight and height. The very first child that I met with celiac disease (prior to finding out about my dd's gluten problems) was in the 95th for both height and weight. He had biopsy and blood proven celiac disease. My dd had FTT and did not test positive for celiac disease on blood work. We opted out of the biopsy as her GI felt she was too little to biopsy, had egg allergies and soy intolerance (not a great candidate for anesthesia) and we were fed up with invasive tests.

It may also be that your son has extreme gluten sensitivity and not celiac disease. No matter what the results are, trust in your own observations on this. You live with your son. No one will know his reactions to foods better than you and tests aren't always accurate.

HTH

What is the difference between gluten sensitivity and celiac disease??

Oh my gosh - the doctor doesn't even make sense. You can't see villi damage without a microscope. She may be referring to the scalloped appearance that the intestines can have when the damage is bad enough? How many biopsies did they take anyway? They're supposed to take 5 or 6 at least. The damage from celiac is patchy and scattered. It has been described like paint splattered on a wall. There can be extensive areas of damage and then other areas that are totally fine. Because the villi damage that they look for can't be seen with the naked eye, they take several biopsies to increase the chances of hitting a damaged spot. Honestly, I don't think the GI knows what she's talking about when it comes to celiac. What she's telling you to do is potentially very dangerous. I really recommend asking around the celiac support groups and finding someone else to take her to. I wouldn't go back to that GI.

I used to be a medical transcriptionist so I know what you mean about knowing that they're human. When I realized that most doctors not only can't spell, but can't even string a proper sentence together sometimes (it was always funny to work for the doctors who tried to dictate their own punctuation). But that's why they hire us. We keep them looking good and on time.

Driving and then staying with relatives is one of the best ways to go. Definitely get the Triumph Dining cards and the book. The dining cards make things a lot easier when you go to a restaurant. When people have something to read, they seem to retain the information better than if you tell them. It also makes everyone more comfortable because the kitchen has something in writing to refer to when they make her meals. The basic American dining card is in English on one side and Spanish on the other. Which would come in handy in Texas. The book is great because it gives a lot of advice on how to deal with restaurants.

In other people's houses it gets tricky, but it's better than staying at a hotel and not having a way to cook. Here's what I would do - Get yourself a plastic bin with a lid that you can take with you. Get a small pot and a small pan that you can keep in the bin along with a few cooking utensils. That way you can make whatever she needs. When you're done cooking for her, put them back in the bin so that they don't accidentally get used for regular food. You'll have to be careful of helpful relatives who might inadvertantly touch something with glutened hands, making it no longer gluten-free (second-hand gluten).

Also, start experimenting now with gluten-free food, even if you're not sure when you're going to start the diet. Go to the health food stores in your area and buy some things to try out. (Stay away from the Ener-G breads - blech) Not everything is going to work out and some stuff may be downright nasty. If you have a few treat things that you know she likes, it will make things much easier.

For the road, I'd pre-make as much of the food as possible and keep it in a cooler. gluten-free pancakes for breakfast? Maybe some filling fruit like banana or apple? Van's makes frozen wheat-free waffles too. A lot of regular grocery stores sell them. Every gluten-free pretzel I've ever tried has tasted like regular pretzels to me, so that would be a good snack too. Raisins or dried cranberries. Plain M&M's are gluten-free too (I think the only M&M that isn't gluten-free is the crispy). So are Jelly Belly's. Good to keep on hand for any roadtrip fits. Lunch and dinner could be precooked chicken or hamburger patty. Maybe some Frito-Lay brand chips (they label everything and won't hide gluten or any other allergen behind a latin name or behind "natural flavors), make sure you read the ingredients).

Outback Steakhouse has a gluten-free menu that you just have to ask for. So if you know where the Outbacks are along your route, you'll be able to plan to stop there for lunch or dinner.

Nancy

Nancy you are a life saver. That has given me so many ideas!!!

Can my daughter really get sick from pots and pans used for gluten products?? I didn't even know that was possible. Do I need to buy new pans for here at home for only gluten-free foods?? I have heard of people on the forum talking about soaps too. Do I need to switch her bath products too?? I think in my head that she is not violently ill like alot of other children I hear about and I also know that constant diarrhea can't be good. Hey, the Doc did tell me that by changing her diet that the villi will be healed in two weeks.... Is it only the intestinal damage that is not irreversible??

The closest health food store is about 30 min. and I plan to go soon to get some things. I know my next grocery trip is going to take me forever and probably frustrate me too!!

You asked about the biopsy and I was in the room during the procedure and I remember them doing 6 different biopsies and they said they were all negative. We went for the blood draw today (antibody panel is what the doctor called it) It was a nightmare. The lab here had to call the ped GI to ask what kind of test they needed to do, that always makes you feel good when you go in for an order and they have no idea what to do!!

I have an appt. with our ped next week and I will talk with him more, but I am gathering my resources to switch not only my daughter but all of us to gluten-free, I just think it will be easier that way.

I will definitely order the Triumph dining book and cards. What about dairy is it gluten-free or doe it depend on the brand??

Thanks for all the great help!! Shealey

Here is some information on celiac groups in Indiana. You could start by asking them for recommendations.

Open Original Shared Link

Open Original Shared Link

https://www.celiac.com/st_prod.html?p_prodi...-33107160020.91

Also, try PM'ing jenvan . She's in Indianapolis. She might be able to help point you in the right direction.

You might also want to post a new topic in the Doctors area to see if anyone here has a recommendation.

Nancy

You know you guys have helped me out so much. I am soooo glad I found this sight.

As per our travel. We will be traveling straight to Texas which is 21+ hrs. So we tend to eat out at least one day all three meals. I am not sure how to do that without gluten. My daughter has a very good appetite. Then generally the rest of the time we stay with relatives. Which is a mixture of eating out and home cooked meals. I saw a book on gluten free rest. on this sight, has anyone ever used one of those books?? Are they a valuable resource?

I did call the GI on Friday and she personally called me back. I flat out asked her why we were waiting on damage to the intestine to happen. She told me that we did not need to wait on blood work (antibody pannel is what she called it) to be done in July, which she realized was never done the first time. She said that the lactose intolerance was probably due to the liver disease (she really can't know that) and that the villi were visually worn a little, but biopsy was good. I went to local lab on Friday because I already had the blood test orders and they had no idea what test needed to be done, so anyhow we are waiting for them to clear that with the doctor and then we should have those results in a week. I will keep you posted on that.

I am now informing myself with all the great resources that have been provided by everyone here, as I have no idea where to begin, so this site has helped me out so much.

Shealey

Your doctors are misinformed. I can see that they think they're protecting her from something, but they're asking her (and probably other children in their care) to suffer through way more than a diet change. There have been stories of doctors here who refuse to give a celiac diagnosis because they think the diet is too hard. The diet is not hard. Being celiac and not being on the diet - that's hard. It causes memory and concentration problems, mood and behavior issues, etc. The extra effort of a gluten-free diet is worth it 100 times over.

You mentioned sensory issues. My son was 2.5 when we put him on the gluten-free diet. He used to just want to be left alone, play by himself. He was happy and content, but he didn't want anyone but me to mess with him. At some point he probably would have needed to be evaluated for autism. After just a few weeks on the gluten-free diet, he had a complete personality change - to the point where one of the ladies at the drop in babysitting center I take the kids to actually got teary-eyed when I picked him up one day. She said - He played with us. He did the singing and dancing and everything. Up until that point he would just go over to the corner and look at the books the entire time he was there.

He went from being at least borderline autistic to being a goofy, loud, active, funny, jabbery little boy in the matter of a couple months.

As much as it sounds like her doctor is trying to help, I would get another doctor, or at least a second opinion with a doctor who is familiar with celiac. This is akin to a doctor saying you should ignore a diagnosis of diabetes in your child. Where in Indiana are you - maybe there's someone who knows of a ped GI or general pediatrician who is more informed about celiac and ALL of the symptoms associated with it.

I'm SOOOOO glad you found us here.

Nancy

Hi,

We have two major children's hospitals in Indianapolis, we are about 1 1/2 to 2 hrs north of Indianapolis. There is Riley children's hosp. and St Vincent's, which is where the ped GI we saw.

This may sound really selfish, but I don't mean it that way, I just want to know how you travel with a child on this diet. We are planning a trip to South Texas for two weeks in July. How do we feed our daughter when we are on the road? Is it possible? Shealey

I guess what confuses me is that they are calling her biopsy normal, yet there was blunting of the villi? (the fingerlike projections). Are they calling it normal simply b/c the damage was not in the small intestine yet? I would start reading all you can about Celiac, become informed, and then ask more questions. Then you can make your decision from there. And just one more thing....your son who is PDD might also benefit from the diet. Might be worth a shot. My daughter has two out of the three indicators for autism, and I really believe that b/c of the gluten/casein free diet that she hasn't been dx'd as autistic. Hope this isn't overwhelming you! I know the feeling of having alot to handle, all of my kids have a variety of health issues, and dealing with a restrictive diet can be stressful. But it's also empowering to know that I am able to do something to help my kids get better. Being informed and armed with information is a powerful tool to have.

Nini has a website that you can check out, with info about Celiac. You can also access a starter kit there for newbies. I'll try to copy the link for you:

Open Original Shared Link

Also, just right click on my name, taweavmo3, and an option to send me a message should pop up. You can send me a private message that way with info. And don't worry about shipping, I'm happy to help. That book has been sitting in my closet for ages, it should get used by someone. I found it very helpful in the beginning. I'm sure others here will have more advice too, this board is great like that.

Yes, they said the biopsy was normal because the intestine was only inflamed. They essentially told us she was on her way to a celiac disease, but then said it was miserable and we would deal with it later, so we were given orders for repeat blood work in July.So they basically want to take the wait and see approach. She has several red flags, being the inflammed intestine, low folate level, damaged villi, lactose intolerance and genetic make up of celiac. So you see why I am confused.

I have also read that the gluten free diet is beneficial to austic children. My son is so picky because of his sensory issues though. I did get some results in the mail today which are pretty much foreign to me but it did state that she had HLA typing for celiac disease, which did show a positive HLA-DQ8???

Thanks so much for the link and I will send my info to you I will definitely read that book!!!

I think one of the hardest things about Celiac is that no two Celiac kids are alike. There are SO many different symptoms. My daughter never had vomiting or diarrhea. Now that she has been gluten free for over two years, she does vomit when she's had a gluten accident, and get very very sick. Her only symptoms starting at 18 months old, were failure to gain weight (which docs totally blew off, since she didn't actually lose weight until later) and failure to grow. She also had bulky stools, and a distended belly. But the docs said that her belly was leftover baby fat since she hadn't grown, which is ridiculous now that I look back on it. And since I'm small myself (4'11"), her lack of growth was said to be genetic.

Yet even with her lack of major symptoms, she had a very positive biopsy and blood test. Had I known more, I would not have waited as long. She now has major delays in speech, and is still about a year and a half behind for her age. Poor bug still has a lot of work ahead.....once a child is sick enough to yield positive test results, there can be detrimental effects to their development.

I get very agitated when docs take such a lax approach to these symptoms. Not all kids will have delays or development problems, but when you are dealing with malabsorption issues in children of a crucial developmental age, it's risky to take a wait and see approach. The medical community as a whole is much more willing to dispense medications with harmful side effects before they'll ever suggest a diet change. Okay, I'll get off my soapbox now, lol. Sorry for the ramble!

Getting started, here's what I did. Find some Dana Korn books...one good one is Kids wtih Celiac Disease. I would actually be happy to mail you mine, as I don't need it anymore. You could PM me info if you feel comfortable doing that. Second, find out if you have a local R.O.C.K. (raising our celiac kids) chapter near you. That was a great support system for me. Also, Nini on this board (correct me if I'm wrong!) has a starter list for beginners.

Hope that helps some!

I think I am just in denial that this could be happening?? I was like that when she was diagnosed with Duarte Galactosemia. I also have a son who is severe asthmatic and PDD. I honestly feel like I can't handle one more thing right now!!

I would so much appreciate that book. I will do anything to learn more for my baby. I have to admit that this is my first time on a message board so please let me know how to get your email address or what your prefer so I can send you my address. I will send money for shipping. Also please instruct me of how to get in touch with Nini too.

See my little girl was seen by the GI due to her diarrhea which we thought was from the DG. She is ahead in her speech ( she already speaks in sentences ), she is normal on the growth charts for height and weight. She has really had no other issues, and the ped already had sent my son to the same GI , (for suspicions of acid reflux ) and I think he didn't want to mess with the whole issue. Her blood and biopsy results were normal, so does that only really mean she has no lasting damage yet?? The only positive test was the genetic one. Does that mean that we gave her that? My husband and I are neither positive for Celiac. Is she maybe just gluten intolerant?? Will I have to shop at an all natural food store for her?? Will we ever be able to eat out again?

Thanks for the help, Shealey

I agree with taweav - it makes me cringe to hear that they're waiting for more damage than what they're seeing. I'm sure they just know how much she's (and you) have been through and don't want to add another thing to her list. But they're doing a disservice to her by saying you should wait. If she actually has villous atrophy (the finger things that absorb nutrients being worn off) at her young age, then she has celiac, plain and simple. Tests for celiac are notoriously inaccurate for adults, and are even more inaccurate for kids under 4. There are a lot of adults with gluten issues who don't have the villous atrophy they're describing to you. It sounds to me that she needs to be on the gluten-free diet.

You've definitely found the best place in the world to go on the gluten-free diet. Welcome to the boards. I hope your daughter feels better soon.

Nancy

Hello,

Thank You so much for responding. It is so good to hear from somone who has been through this!!

I don't even know where to start with the gluten free diet?? Is is just basically fruits, veggies and meats?? What if she just continues to eat as she is now?? The really only physical side effects she is having is the diarrhea (which honestly I don't remember her not having diarrhea) and her bloated stomach. Wouldn't she be sick all the time now?? Like vomitting and just constantly fussy??

Shealey

hey its interesting that you would say that! i had my 4th baby newyears day of 2006 and my hysterectomy through my belly button on march 13th 2006, this is when my problems began, started with some stomach pain and gas, and this xmas i got very sick! i have been wondering if my hysterectomy maybe kicked off celiac, or at least a gluten sensitivity. would love to here your thoughts on it

Hello,

I am not a person with celiac disease ( I found this site looking for some answers for my daughter)

I just wanted to say that I am a mom of two children. I have endo also and haven't had a lap for 9 years which shocks the heck out of my doctor. I take a natural progesterone cream by Lame Advertisement it is called Prolief. It is amazing. I was given shots for my son and found out about this cream about 4 years ago. I accidently got pregnant with my daughter. She is now 21 months. I also have recently been diagnosed with PCOS and take glucophage daily. I thought I wouldn't need the cream anymore. But I do!! It makes a huge difference in my life. I just wanted to encourage you women out there. Also the Prolief makes you more fertile ( so they say). I have also been told that the glucophage makes you fertile too. I'm being carefull now I'm not ready for any more babies yet!!! I also wanted to add that I am like you wanting a hysto too, but my doctor told me I would just be exchanging one problem for another. You know I'm glad at least he is honest. Most Doc's do the surgery and don't let you know that things will get better in one area but you will have a whole new set of issues. Shealey

Hello,

I have so many questions?? My daughter is 21 mo. and diagnosed with Duarte Galactosemia at 3 weeks of age. It is a liver disease. She has always had an enlarged abdomen. We saw a GI in Feb. and she suggested that we scope her. The procedure showed that her intestines and lower part of her stomach was inflammed. The biopsy and allergy testing came back normal. It did show she was lactose intolerant, she is already on soy due to the liver issue. We were told that out of the three test that are done for the gluten allergy, my daughter was positive for the genetic make up. Her fulate level was low and they said that the little part between the stomach and intestine normaly has these little finger things that bring in the nutrients and my daughters were smoothed off and could not grab any nutrients. So basically they tell me she is going to have celiac disease and that I just have to sit and wait for it to happen. Does anyone know of anything that can be done to keep this from happening?? We go back in July for repeat blood testing. They suggested putting her on a multivitamin that has B-12 and folate. We are now doing that. I just feel I can't sit back and watch this happen. She is a rather normal and healthy little girl. She has had constant diarrhea for what seems like forever. Her dairy has always been limited and we are now giving her a lactaid pill daily to help with what lactose she does have. Any suggestions?? I would appreciate any comments!!! Shealey