New Here And Need Advice!

[kempy99]

Hello!

I'm new here and new to the gluten-free world. My 3 year-old son was diagnosed in September with Celiac. Prior to that I don't think my husband nor I had even heard of the disease as neither of us have the condition (that we know us) or any food allergies so to speak. So this diagnosis blind-sided us like a Mac truck!

Our son's GI specialist referred me to this site for support and information. Besides this referral (which I've learned a TON from you guys already, spending the last 2 days browsing the message boards) we have not been given any information, order or guidlines (besides the "keep him off of wheat products" comment from his pediatrician). Well, as I'm rapidly learning, wheat/gluten is in more things than simply bread and pasta (I just read the ingredietns listing for McD's online and was shocked by the wheat in french fries listing!!!)

I have spent hours online researching the disease (is it considered a disease or condition - I want to be sure I'm classifying it correctly and not offending anyone with my terminology). And through all these hours of research, I'm learning alot, but realize I have alot more to learn. It would be so helpful if I could get one (or two or three) piece(s) of advice that you found the most helpful in acclamating yourself to living with or raising a child with Celiac. Also is there anywhere a listing of foods/products that one should be more careful in getting gluten-free clearance (i.e. I had no idea that shampoos, paper products, baby wipes could possibly contain gluten that would be harmful- I though that it was only food to we cautious of).

Thank you in advance for your responses. I am so grateful for forums like this, you guys have already been a great help!

Rebecca

-Mom to Brandon (3yrs old - diagnosed w/ Celiac at 2 1/2 - no family history of it)

[dlp252]

I just wanted to say welcome. I don't have children so can't offer advice in that area, but just wanted to assure you that while it seems overwhelming right now, eventually some of this will become second nature to you.

[Smunkeemom]

My first peice of advice to anyone who is new to the diet is to print out the list of forbidden ingredients (tgere is a link in my sig.) and then take it everywhere, I got those plastic page protectors for mine and put it in a 3 ring binder.

2 Read the ingredients on EVERYTHING, gluten is hiding everywhere, you need to check everything until you get used to what to look for in what items, if it's going to touch your son read it

3 pack a gluten free bag, with snacks, hand soap, lotion, ect. for your son everywhere you go, explain to everyone that he can only have what's in the bag.

4 make a gluten notebook (it can be the same binder that your forbidden list is in) and keep companies gluten free lists, restraunt lists, and an emergency grocery list (say like 20 things he likes to eat, just in case he needs food and is with grandparents and you aren't there to check ect.)

5 have a meeting with everyone who comes into contact with your son, give them copies of the note book (preschool teachers, grandparents, aunts, uncles, church nursery workers. ect.)

6 start talking to your son now about what he can and can't have, my 2 year old for example knows that fresh fruit is okay, but cookies, crackers, candy, ect. needs to be checked so she won't even touch them without an "OK" from me or her dad.

I can help you with the notebook if you PM me your email address I will email you mine and you can see what it's all about and customize it.

[TCA]

My 3 year old son was just diagnosed too adn I think I'm finally getting my arms around the diet. I've been gluten-free since Sept. due to nurshing my celiac daughter (9 mos). My son was diagnosed last month. Here are a lot of things he eats:

Oscar mayer hot dogs

Ore Ida french fries

Oscar mayer bologna

Hormel pepporoni

Kraft cheeses

Hormel shaved black forest ham

Breadless Coating gluten-free chicken fingers (I found them at Publix)

Fresh fruit

gummies

nerds

peanut butter and Jelly.

Lay's Cheetos

Lay's potato chips

Mission Corn Tortillas (I use these for quesadillas and as pizza crusts)

Delimex Taquitos

etc......

I've also found some great mixes: Bob's Red Mill pancakes and Homemade Wonderful Bread (sold at Kroger and heath food stores), Cause You're Special hearty biscuits, and Craving's Place brownies (the last 2 I ordered off of glutenfreemall.com).

I'm still learning, but these items have saved me!!!!

I have some recipes and stuff too. Feel free to PM me if you want more info.

[kempy99]

My first peice of advice to anyone who is new to the diet is to print out the list of forbidden ingredients (tgere is a link in my sig.) and then take it everywhere, I got those plastic page protectors for mine and put it in a 3 ring binder.

2 Read the ingredients on EVERYTHING, gluten is hiding everywhere, you need to check everything until you get used to what to look for in what items, if it's going to touch your son read it

3 pack a gluten free bag, with snacks, hand soap, lotion, ect. for your son everywhere you go, explain to everyone that he can only have what's in the bag.

4 make a gluten notebook (it can be the same binder that your forbidden list is in) and keep companies gluten free lists, restraunt lists, and an emergency grocery list (say like 20 things he likes to eat, just in case he needs food and is with grandparents and you aren't there to check ect.)

5 have a meeting with everyone who comes into contact with your son, give them copies of the note book (preschool teachers, grandparents, aunts, uncles, church nursery workers. ect.)

6 start talking to your son now about what he can and can't have, my 2 year old for example knows that fresh fruit is okay, but cookies, crackers, candy, ect. needs to be checked so she won't even touch them without an "OK" from me or her dad.

I can help you with the notebook if you PM me your email address I will email you mine and you can see what it's all about and customize it.

Awesome AWESOME advice and ideas!!! Thank you!

I do read everything, but it's the hidden gluetent hat I worry I'm not seeing/identifying. I'll definately be checking out that website you mentioned. If you are willing to share the contents of your "notebook" with me, that would be so so helpful and very much appreciated! I'll PM a request to you.

Thanks again!

[kempy99]

My 3 year old son was just diagnosed too adn I think I'm finally getting my arms around the diet. I've been gluten-free since Sept. due to nurshing my celiac daughter (9 mos). My son was diagnosed last month. Here are a lot of things he eats:

Oscar mayer hot dogs

Ore Ida french fries

Oscar mayer bologna

Hormel pepporoni

Kraft cheeses

Hormel shaved black forest ham

Breadless Coating gluten-free chicken fingers (I found them at Publix)

Fresh fruit

gummies

nerds

peanut butter and Jelly.

Lay's Cheetos

Lay's potato chips

Mission Corn Tortillas (I use these for quesadillas and as pizza crusts)

Delimex Taquitos

etc......

I've also found some great mixes: Bob's Red Mill pancakes and Homemade Wonderful Bread (sold at Kroger and heath food stores), Cause You're Special hearty biscuits, and Craving's Place brownies (the last 2 I ordered off of glutenfreemall.com).

I'm still learning, but these items have saved me!!!!

I have some recipes and stuff too. Feel free to PM me if you want more info.

Your menu looks alot likes ours does

Question about nursing. I am also nursing my 3 month old daughter - is there a reason why I should go gluten-free while nursing her? I have not been diagnosed with Celiac, there is no family history. Thanks again for any advice/info.

[Smunkeemom]

Awesome AWESOME advice and ideas!!! Thank you!

I do read everything, but it's the hidden gluetent hat I worry I'm not seeing/identifying. I'll definately be checking out that website you mentioned. If you are willing to share the contents of your "notebook" with me, that would be so so helpful and very much appreciated! I'll PM a request to you.

Thanks again!

check your email hope it helps

[TCA]

Your menu looks alot likes ours does

Question about nursing. I am also nursing my 3 month old daughter - is there a reason why I should go gluten-free while nursing her? I have not been diagnosed with Celiac, there is no family history. Thanks again for any advice/info.

Our daughter is a special case. She was born with a heart defect and had surgery at 9 days old. She sufffered with terrible GI issues for months and the doctors couldn't figure out what was going on. I had suggested Celiac and they dismissed me. Finally after she went through a stomach surgery and was still having serious issues, I ignored the doctors and eliminated gluten from my diet and she started thriving. She has since been diagnosed with Celiac. I should have followed, my gut, but 5 doctors told me I was crazy. I hope your daughter is doing great and not having any of these issues.

[kempy99]

Our daughter is a special case. She was born with a heart defect and had surgery at 9 days old. She sufffered with terrible GI issues for months and the doctors couldn't figure out what was going on. I had suggested Celiac and they dismissed me. Finally after she went through a stomach surgery and was still having serious issues, I ignored the doctors and eliminated gluten from my diet and she started thriving. She has since been diagnosed with Celiac. I should have followed, my gut, but 5 doctors told me I was crazy. I hope your daughter is doing great and not having any of these issues.

Oh my! You and your daughter have sure gone through quite alot in her short little life! So glad to hear that she is doing well now! A "mother's instinct", there truely is something to that! Thanks for the reply.

[skoki-mom]

neither of us have the condition (that we know us)

Hi there!

Just wondering if you and your husband were actually tested. It is sooo important for family members to get tested. I have never been sick a day in my life with celiac disease, but I got tested after my sister found out she had it, and low and behold, I have it too. I actually had quite extensive damage on biopsy, but no outward symptoms. I urge you to get tested, and also and other children you may have. The highest correlation between family members is first degree siblings....there is a 13% chance they will have it too. I follow the diet as a preventative health measure, not for symptom relief.

Yes, it takes time to learn the diet. It's not easy, but so important for being healthy. Best of luck to you!

[elfkin]

With our initial diagnosis (which completely blindsided us), we were just told to not give him gluten and to read labels. I was confused and in a panic to put it mildly. The hospital dietician gave us the food pyramid?! Long story short, we called some people on a list from the national celiac support groups and begged them to tell us what to do. (Thank you to the completely unsuspecting people out there who comforted me that night! Wherever you are!)

Soon I had found a dietician specializing in gluten intolerance (herself a celiac) in a town 2 and a half hours away. We made an appointment and went to see her. THIS WAS THE BEST DECISION WE COULD HAVE MADE! She put us in touch with a university hospital with a celiac specialist ped. Soon we had answers and knowledge and confidence. The learning curve is steep at first, but soon it will be second nature. Since then, 3 of the 4 of us have been found to have gluten intolerance or celiac's. It gets better with time, in my opinion. I hope you are able to build a good support system and find helpful materials to get you going. The info. on this site has been so helpful to us. Best wishes to you - Hang in there!

[Electra375]

My ds2 is 3 1/2 and was dx in Sept as well!!!

I cried the first 2 days after reading page after page of dxing on the internet and realized my little boy had been suffering since birth. Then I got on with fixing him and learning about the gluten-free diet.

I went to our library and got a few books, but didn't get a cookbook. I suggest getting a cookbook b/c there is some information in those that is most helpful. I finally brought myself back to the library and borrowed every gluten-free cook book they had, so much information and answers to questions I had about flours. Keep in mind that even a year ago there were different thoughts on what was gluten-free and what was not gluten-free. So that is a bit frustrating when reading older material.

Danna Korn's Kids with Celiac Disease is a must IMO.

Also find a local ROCK group or CEL-KIDS (google thoses)

The closest ROCK group leader also runs a SILLY YAK yahoogroup which has great files.

Open Original Shared Link

I did join the local Celiac Spue Assoc support group. There is one other mother there w/ a Celiac small boy. We had a great Christmas dinner with them all gluten-free and my little boy loved it. "it's gots wheats mommy?" "no, it is all gluten free, wheat free"

There is so much out there that I had to narrow it down to a handful of places on the internet and leave it at that. You could spend months 24/7 reading the internet, but we have kids to raise and feed... I'm starting to expland now that I've got a handle on things.

I just made the first loaf of gluten-free bread that came out and that my son actually would eat!!! He ate a PB&J sandwich and ate every bite!!! I bought the Ener-G bread to start with and he would eat it toasted with cinnamon and butter, but this bread was fabulous made w/ sorghum flour. I like it, my dh liked it and my other children like it. I would say it is better than wheat bread any day!!!

Note -- check labels each and every time you buy something, that goes for restaurants too, as in McDonalds just took French Fries off the gluten-free list this week.

[TCA]

My ds2 is 3 1/2 and was dx in Sept as well!!!

I cried the first 2 days after reading page after page of dxing on the internet and realized my little boy had been suffering since birth. Then I got on with fixing him and learning about the gluten-free diet.

I went to our library and got a few books, but didn't get a cookbook. I suggest getting a cookbook b/c there is some information in those that is most helpful. I finally brought myself back to the library and borrowed every gluten-free cook book they had, so much information and answers to questions I had about flours. Keep in mind that even a year ago there were different thoughts on what was gluten-free and what was not gluten-free. So that is a bit frustrating when reading older material.

Danna Korn's Kids with Celiac Disease is a must IMO.

Also find a local ROCK group or CEL-KIDS (google thoses)

The closest ROCK group leader also runs a SILLY YAK yahoogroup which has great files.

Open Original Shared Link

I did join the local Celiac Spue Assoc support group. There is one other mother there w/ a Celiac small boy. We had a great Christmas dinner with them all gluten-free and my little boy loved it. "it's gots wheats mommy?" "no, it is all gluten free, wheat free"

There is so much out there that I had to narrow it down to a handful of places on the internet and leave it at that. You could spend months 24/7 reading the internet, but we have kids to raise and feed... I'm starting to expland now that I've got a handle on things.

I just made the first loaf of gluten-free bread that came out and that my son actually would eat!!! He ate a PB&J sandwich and ate every bite!!! I bought the Ener-G bread to start with and he would eat it toasted with cinnamon and butter, but this bread was fabulous made w/ sorghum flour. I like it, my dh liked it and my other children like it. I would say it is better than wheat bread any day!!!

Note -- check labels each and every time you buy something, that goes for restaurants too, as in McDonalds just took French Fries off the gluten-free list this week.

Could I get that bread recipe? The only one I've found that my son likes is Bob's Red Mill Homemade Wonderful bread. I read that you realized your son had had it since birth. What were his symptoms? We're trying to make sure we're not mising anything with our 9 mo. old.

Thanks!

[Electra375]

The recipe I used that he liked is Ilene's Sorghum bread in the SillyYak files sections of the yahoogroup I posted.

Symptoms of my infant --

Classic Dr. Sears High Needs infant

Cried all the time, cried before nursing, cried during nursing, cried after nursing, never satisfied

Cried when he was laid down, sat up to sleep (20min at a time) in his carseat for the first 3 months of his life.

Needed to have his knees up into his stomach in the hospital or he screamed

[i heard him screaming when he wasn't he screamed so much]

Loved the baby sling

On Breast Milk only he had the mucousy, frothy poos, greenish in color -- never the classic yellow orange bf poos. Sometimes there were be white chunks in the frothy mucousy mess which I now realize was likely undigested fat from my bm. I had gone through the hind milk, foremilk issue w/ a lactation consultant and 2 different LLL leaders -- it was not a hindmilk foremilk issue since it was not corrected when I did as I was told. I spoke to our pediatrician many times about it, he finally ordered a Girardia test, it test for a bacteria. Of course that came back negative. I stopped asking the Pedi about it, we also changed insurance providers when he was 8 mo old, so I didn't take him to anyone for quite a while.

We we started solids he broke out in an anal rash which is an indication of allergy. He could not eat bananas, sweet potatos, peaches all those first foods. We waiting until he was a solid 6 mo old before starting solids. On the advice from LLL leader, I moved on to meats b/c fruits and veggies were not working. Meat did not cause the anal rashes.

Every once in a while he would get a burn rash which would happen after the mucousy frothy poos, it was like the bile acid just ran right through him -- I was right, I just didn't know why. It was like his intestinal lining was being ripped out of his body every day and then nothing was left to coat or protect his intestines or butt. This was happening long before solids, when he weaned it got better. My bm was obviously very glutinous and I've had 1 Pedi GI agree w/ me that YES GLUTEN PROTIENs are PASSED into BREASTMILK and I don't care what the literature says, I saw it with my own eyes. I wonder if I might have had some leaky gut issues allowing the protiens to pass. I had the flu while pregnant and I had a c/s which are both stressors. I didn't have any symptoms of a leaky gut, but it is possible and it would explain why my bm was obviously loaded w/ gluten protiens.

Once he was weaned at 14 1/2 months we started noticing the explosive diarrhea happened after eating certain things, so we were cutting those out of his diet. He never would drink milk and yogurt gave him the anal red allergy rash, so he was diary free until age 3 when we got Raw milk from a local farm.

By age 3 we had eliminated all crackers and most processed foods. He didn't like breads, so that wasn't something he ate usually unless he was really hungry and that is what we offered. He naturally had selected himself a diet of fruits, veggies, and meat. He would ask for strawberries, never a cookie, he didn't like them. So he knew that those things hurt his body, but we didn't. He would eat chicken nuggets, but I believe he had difficulty saying no to processed products b/c being so far from their natural state it is impossible to disern whether or not they have what it is that you don't like.

We took him to a family practice after we left the Pediatrician and we told him about the diarrhea, he was unconcerned -- even though he had fallen even further on those growth charts. I should say he had a hard time gaining weight as an infant, but somehow managed to stay in a 25% range. He had the classic celiac disease drop at the introduction to solids.

At 8 mo old he pushed away biscuts and rolls at the dinner table! I think kids are really smart and know their bodies! We as adults just have to learn to listen to them. My ds2 will not eat at a restaurant, even with the dinning card and us telling him it's okay. It is frustrating, but he is protecting himself in his parents neivity.

Now my dd is on those charts at 25%, yet she looks so healthy. She does not show signs of celiac disease, but she has always eaten what her brother eats and he never was much of a gluten eater. In addition, by the time she was old enough to be eating 'crackers', her brother wasn't allowed to have them, so she never got to eat those much. My dh gave her oatmeal one day and it came out they way it went in, this has been since her 1st birthday. I think if I gave her a glutenous diet she would have diarrhea all day everyday -- she's in cloth, I really don't want to do that. I'm hoping her blood test will be accurate even though her gluten intake is low. At the very least we'll know if she has the gene and if she has the IGA deficient issue.

This may sound horrible, but I'm almost hoping all of our kids have celiac disease. It would make going to an entirely gluten-free household much easier on my dh. I don't think I could get away with going entirely gluten-free for the household unless all our kids were affected (or at least 2 of the 3). I feel that I would be better gluten-free.

[fatherof4yearold]

Hey Rebecca,

My is son is now 5 and we found out in October 2004 after a biopsy of his intestine the gastro doc called and said he had celiac disease and that was that, we were like you and never heard of this disease, all he ate was wheat products- pancakes, waffles chicken fingers mac and cheese etc...

On the bright side we just had him have a blood test after a year of gluten free and his levels are back to normal, he gained 8 pounds this year has not thrown up once in the last year and is just so much more healthy!

It was brutal at first, we threw everything that had wheat in it out.

He hated everything we tried to feed him and we have gotten creative at masking the gluten free taste. He liked the gluten-free waffles from the start, and we bought mixes to bake his own bread and make pancakes (which I shred up apples in to mask the taste).

Baking gluten-free from scratch is down right painful, we have had some fantastic flops.

We go out to eat only once a month if to limit any cross- contaminations issues and he was eating McD's fries too.

Slowly he started eating more and more, now we have Taco Night which he loves. The pastas with the multiple ingredients (corn,rices and others mixed together) work best, the others are piles of starch an hour after cooking.

Wellshire Farms makes gluten free chicken nuggets which are good and we buy Mr Leepers Gluten free meals for easy dinners.

You get used to it after awhile, he went to a B-day party at chucky cheese and we brought a frozen pizza that they cooked for us for him. He passes on the cake at parties but doubles up on the Ice Cream and we bring him cookies that he likes.

Hope this helps more then happy to share. Like I said he improve tremendously by being gluten-free for the last year so it is all worth it.

We got the low down on all the gluten-free snacks and different foods if you need any help let me know.

Also if you have a Wegmans super market around go there they are great!

[happygirl]

try tinkyada pastas---they are the best!