UPDATE..............celiac disease/gluten free?

cAtWmN84

UPDATE:

blood test was normal but i'm not sure if they tested for more than one type of wheat?its very common to get a false negative.maybe she doesn't have it?all i know,when we went gluten free all her symptoms (ALL OF THEM!) went away. i'm also thinking maybe my child is just super sensitive to processed foods or corn syrup?either way, i know the answer has to do with diet!


OLD POST:
i feel adri may have celiac disease.i'm almost certain of it.now i have to get her ped onboard with diagnosing it. i hate this!theres no cure and the only treatment is a gluten free diet.my grocery bill has doubled!i'm still new to the whole gluten free thing so i was wondering if any of you mama's have any experience with this. ??? i've known something was a little off since before she was even a year old (around the time she started eating table foods)and it gradually got worse.

& please don't start playing dr. with me.....questioning me about her symptoms unless you're genuinely concerned feel free to private message me.or find me on FB
https://www.facebook.com/#!/jennifer.lewis.0711
the last time i ask for help here i was put down as a parent and offered lots of advice on how to discipline a typical child.these things are not helpful and i'm not interested in hearing whats normal.i've cried myself to sleep for over a year over this all the while getting terrible advice from family,friends and the ped.the very 1st day of eating gluten free i finally had my sweet baby girl back

pb

I know you don't want advice or any questioning but I think Beckham may have a wheat allergy or something. I have thought about going wheat and gluten free but he is a horrible eater to begin with. My mom was telling me that gluten isn't good for anyone besides that I don't know much about Celiac Diease. Good luck I hope you get some answers!!!

cAtWmN84

pb wrote:

I know you don't want advice or any questioning but I think Beckham may have a wheat allergy or something. I have thought about going wheat and gluten free but he is a horrible eater to begin with. My mom was telling me that gluten isn't good for anyone besides that I don't know much about Celiac Diease. Good luck I hope you get some answers!!!

after seeing what it does to adri and then learning what damage it does to people with celiac/gluten sensitivity,i also question whether wheat is a as good as its claimed to be and most wheat products also contain corn syrup.

mel

It is diagnosed by blood test, so could you just request that from the ped, based on her symptoms?

cAtWmN84

yes, a simple blood test may or may not give accurate test result.it depends on what kind of gluten intolerance she has or could depend on its severity.theres also a skin test and a lower intestinal biopsy. all her symptoms have been reported to her ped over the last 4 years so its all there in her chart.i'm just recently learning they're all connected.

i guess what i'm hoping by coming on here is finding another mom who has already been through it or going through it.FOOD has become a big ordeal now and i need hope.how can i get my food bill to go down. $1,000 a month for 1 adult,1 four year old and a 1 old is NOT ok with me!what are you feeding family?

Zen

I have a friend who has a gluten allergy but other than skipping bread/pasta/cake, there's not a whole lot of attention given to food. I think it gets expensive when you try to find gluten-free substitutes for popular wheat products. Whether Adri has celiac's disease (I hope not!) or a gluten allergy, sticking to the following foods may help significantly:

Natural/unprocessed beans, seeds, nuts
Fresh eggs
Fresh meats, fish and poultry
Fruits and vegetables
Most dairy products
Rice
Quinoa

K&H

I think any shift in diet is hard at first. H and E absolutely cannot eat high fructose corn syrup. Even the smallest bit of it (one bite of something) and they will both itch their skin until it bleeds. At first it was extremely difficult and expensive to eat this way, but after time we've adjusted and you start to really shift your mindset. You think differently, you pay attention differently, and you find substitutes for things, or lose your taste for them entirely.
I would suggest going on pinterest.com and searching gluten-free. There are bound to be a million boards with recipe ideas, probably even toddler ones. I have a friend with Celiac and she swears it has made all the difference in her life. She has a board and is constantly sharing new ideas and great looking food.
I think once you get used to it you'll know how to make it affordable.

TheOtherLovingMoms

I have celiac disease i was diagnosed about 4 yrs ago it is a hard diet to follow for mebecause i love pizzaand pastas. Yes it can be expensive. I got a book from a nutritionist that lists everything that contains gluten You will have to read the ingredients on everything, including spices, sauces, soups, everything All fresh fruits and veggies are gluten free. Try to talk to a nutritionist about getting a list of all the things that have gluten in them bc you would be surprised.
I had an upper endoscopy done and that is how they diagnosed me. I sure hope it isnt celiac

old mama

My cousin has a son who is 16. They have been battling this all his life. I did notice a whole section of the grocery store devoted to gluton free. I was surprised all the items you could buy there. I am sure it would be more expensive. From what I have heard the kids feel so much better once they have been diagnosed and are on a gluton free diet. It does make life more complicated for sure.

cAtWmN84

TheOtherLovingMoms wrote:

I have celiac disease i was diagnosed about 4 yrs ago it is a hard diet to follow for mebecause i love pizzaand pastas. Yes it can be expensive. I got a book from a nutritionist that lists everything that contains gluten You will have to read the ingredients on everything, including spices, sauces, soups, everything All fresh fruits and veggies are gluten free. Try to talk to a nutritionist about getting a list of all the things that have gluten in them bc you would be surprised.
I had an upper endoscopy done and that is how they diagnosed me. I sure hope it isnt celiac

we love pizza and pasta's!we've found an ok brand of pasta's made from 100% corn but i REALLY miss papa johns and dominos.

i've also found through trial and error.......soy sauce turns her into the devil! i also made the mistake of not reading the label on my spices.i tried so hard to make a healthy meal gluten free and i used lemon peper spice on the chicken and that caused issues. i'm unsure of all cooked meat at the store or restaurants becuase things are added during the cooking process and i just took out all meat unless i buy organic.sandwich meat i'm unsure about because i don't always get the same results with her.

i however, just had my first veggieburger and loved it!i was never much of a meat eater and can't believe it took 27 years have one of these!i get the amy's brand.we buy Udi's white bread and its better than any bread we've had before!but its $5.99 for a small loaf and we can go through 2 of those a week.

K&H corn syrup effects adri in a similiar way gluten does.i hate the stuff because it also seems to be in everything.i shop mostly at earth fare to avoid the corn syrup.

blkbrd3

I'm gluten free too. The suggestion to do research on the internet is spot on. My favorites bloggs are the Gluten Free Goddess and The Gluten Free Girl & The Chef.

Keeping your food bill down can be easily done if you give up processed foods. You must assume gluten is in everything processed unless otherwise stated. Heck it's even in many comercial ice creams.

Spend 30 days and give up pasta, breads, canned soups, the whole 90 yards. If you don't make it from scratch, you don't eat it. It's summer so serve tons of fresh fruits and veggies. Avoid sauces and dressing unless you know they are gluten free. With a little one around the house your crock pot is your friend.

I often have to eat on the fly, so planning ahead makes life so much easier.

Freeze your left overs. Freeze anything that will make your life easier. I make and keep my freeze stocked with homemade items like individual no crust apple pies topped with a cinnamon crumble, butternut squash soup, chicken soup, twiced baked potatoes, cooked boneless shredded chicken, and chicken stock frozen in individual servings.

I bet frozen grapes or frozen juice ice cubes might be a big hit at your house.

Take snacks with you when you go out or you attend parties. String cheese, grapes, and nuts are a few of my favorites. Avoid fast food. Bring your own meals to potlucks and family gatherings.

When ever possible I buy in bulk or from my food co-op. I buy in season as well. It took time but my grocery bill is less now than when I was eating "normally."

After you and your family adjust to not having breads or pasta with every meal you can add them back slowly. This is where the real expense in being gluten free is. When you serve gluten free alternatives make them the very best you can. For example when I want comfort food I make a mean mac and cheese with bacon sprinkles from scratch. It tastes better than boxed types and as a result I eat less of it.

Being gluten free is tough, but once your used to assuming it's in everything and acting accordingly you'll both be fine.

Remember that gluten is darn near added to everything from some toothpastes, shampoos, lickable envelopes, play dough, school supplies (glue), fast food french fries, ice cream, rice crispies, etc. Re-exposure is not uncommon and you should cut yourself a break if it happens. Each gluten free person has different tolerances to/ from environmental or accidental exposure. As your child grows this tolerance may grow as well.

This diagnosis may not be the end of the world. It may be the begining to being happy to be in one's own skin.

Goobie

All I can suggest is get the blood test and read read read your lables. I have in my daycare a 9 year old, celiac, autistic fellow (who is also my best friends son), and I have been majorly educated in the ways of how gluten hides in thing... soy sauce, worshesterchire sauce, spices like Club House... However, I also have learned that the USA is pretty darn good about labling thigns... it SHOULD say just under the ingredients in bolder print if there is any chance of it having wheat products in it.

As for trying to cut the grocery bill, all I can suggest is that you GF feed Adri, and allow for "normal" foods for you and Liam as much as possible when it comes to bread and such. Some things you'll have to make the whole meal GF, yes, but some things not. And use as many whole foods as possible.

TheOtherLovingMoms

cAtWmN84 wrote:

TheOtherLovingMoms wrote:

I have celiac disease i was diagnosed about 4 yrs ago it is a hard diet to follow for mebecause i love pizzaand pastas. Yes it can be expensive. I got a book from a nutritionist that lists everything that contains gluten You will have to read the ingredients on everything, including spices, sauces, soups, everything All fresh fruits and veggies are gluten free. Try to talk to a nutritionist about getting a list of all the things that have gluten in them bc you would be surprised.
I had an upper endoscopy done and that is how they diagnosed me. I sure hope it isnt celiac

we love pizza and pasta's!we've found an ok brand of pasta's made from 100% corn but i REALLY miss papa johns and dominos.

i've also found through trial and error.......soy sauce turns her into the devil! i also made the mistake of not reading the label on my spices.i tried so hard to make a healthy meal gluten free and i used lemon peper spice on the chicken and that caused issues. i'm unsure of all cooked meat at the store or restaurants becuase things are added during the cooking process and i just took out all meat unless i buy organic.sandwich meat i'm unsure about because i don't always get the same results with her.

i however, just had my first veggieburger and loved it!i was never much of a meat eater and can't believe it took 27 years have one of these!i get the amy's brand.we buy Udi's white bread and its better than any bread we've had before!but its $5.99 for a small loaf and we can go through 2 of those a week.

K&H corn syrup effects adri in a similiar way gluten does.i hate the stuff because it also seems to be in everything.i shop mostly at earth fare to avoid the corn syrup.

Land o frost turkey and chicken lunch meat is gluten free. Also if you have a kroger around you their store brand has gluten free lunch meat.
Pamela's brand cookies and cake mixes are delicious. I found some pizza crusts at giant eagle that are gluten free and really good. The crusts are small and you get 5-6 in a package for $7.99. I hate all the gluten free bread I have found so I usually make bread free sandwiches for myself, meaning I put a slice of cheese between 2 slices of cheese and roll it up and dip it in hellmans mayo which is gluten free. Chex cereals also makes gluten free cereal. Pm me orsend me a fb message if you have questions or want to talk. I will pm you my cell number.

K&H

I was just thinking how hard it would be of Adri is a big sandwich girl. The rollup "sandwich" made me remember... Food on a stick! If you get skewers you can make kabobs of all sorts and then have something quick and easy that could take the place of a sandwich. I agree with the pp who said to give up carb stuffs for Minimum 30 days. Trying to switch to fake products sounds like a horrible hassle. Just go bread and pasta free and then bring it back in later. You're taste buds will change so much that it will be easier in the long run, I think.

starviewchick

I know that Trader Joe's has a list of items they sell that are gluten free and priced reasonably. I agree with PPs that the key is to cook at home from scratch...

Lindsay

My advice as the parent of a gluten,dairy,soy and apple free 4 year old is too keep it simple and sweet..Buy whole foods and make simple filling meals while you adjust..I do most of my shopping at walmart(for lack of anywhere else around here)but I do make bi-monthly trips to Louisville to whole foods for fun foods for her..My shopping list is always the same..when they get something I "think" might be gluten free I start investigating online,their 1-800 #ect...But lableling laws are getting better..:)) What kind of meals does Adri normally like? Go with it ..just make it gluten free..Some of Lilys favs are:

Spagetti and meatballs
Baked Chicken and mashed potatos
Shrimp/or chicken linquine in butter sauce
Chicken Noodle/ or rice Soup
Turkey or Chicken burgers with fries or tots
Cutletts with mashed potatos and sweet corn
Barbecue Chicken legs with sweet corn and melon.
Broiled Chicken breast with mashed potatos and brocolli
Broiled Tipapia w/sweet sticky rice and tomato slices
Tacos
Pizza!!!(Dominos is coming out with a gf crust!!)
Grilled sandwiches w/ sauteed squash and zuchnni slices

We eat ALOT of chicken and turkey(I can get it local and organic and my cholesterol gives me probs)

I work 6 days a wk and have 2 jobs so our meals are plain and I make alot of leftovers and such..But if you need help or ideas just ask..I would be willing to help you with that..I know how frustrating it can be..We don't tend to eat alot of sweets around here but she does have her favs and I keep them around for treats..vanilla "coconut" icecream with gluten free cones,popcicles,Her "smoothies",popcorn,fruitsnacks,ect...We eat alot of fresh fruit as dessert but on the wkends I make cupcakes(out of a box:),muffins..that kind of thing..I hate trying to work with all those flours so I tend to find a mix that works for me:) I am here if you need anything....

S

ttc.jujubee

Where we live it seems just about 2 in 10 people are GF or have celiac disease. So much to the point that just about every restaurant offers GF/Soy free/Dairy free options. If you are looking for cooking ideas and affordable ingredients, Bob's Red Mill offers a full GF line. Many stores carry it and you can order online. They have things like pizza dough, ect. (http://www.bobsredmill.com/Gluten-Free/)

Good luck!

cAtWmN84

thank you ladies!you guys have really been of great help and i'm always checking and re reading this thread for ideas

adri's favs are pizza(we get amys gluten free $6.99)
she is a sandwitch girl.always has been and i love the kabobs idea!
we have tried the gluten free dominos.its ok,not great though i still noticed issues after her eating it.a lot of people are complaining over this

the easiest thing we have done for going gluten free is staying out of aisles and shopping the perimeter of the strore for the most part.lots and lots of fresh fruits and veggies. and all natural meats.its getting easier but more work on my end in the kitchen.i love my crock pot

Kari

I don't haave any advice on eating gluten-free, but wanted to send along my sympathies. I have several food intolerances, Justin has a few, and after Juliet's personality-changing experience after eating rice cereal a few weeks ago, well I hope the gluten -free route works for Adri. I have seen what you're talking about and know sometimes mom has to research on her own vs. take the doc's first opinion. You're a great mom for figuring out what works best for her!

Lindsay

I didn't know the dominos already had it!! Going to check into ours this week...If Adri likes Mac and cheese get the Amy's gluten,dairy and soy free frozen mac and cheese..It is sooooo good..I even like eating it:)

JCAlaska

I know someone writing a book on this topic who would probably be happy to share wisdom. If you want me to connect you just let me know. Good luck! I know it can make like more complicated in the kitchen but well worth the effort when it comes to quality of life for everyone in the family.

cAtWmN84

JCAlaska wrote:

I know someone writing a book on this topic who would probably be happy to share wisdom. If you want me to connect you just let me know. Good luck! I know it can make like more complicated in the kitchen but well worth the effort when it comes to quality of life for everyone in the family.

that would be awesome,thank you!

annerbones

Call the school, so many children have allergies that the school should be sensitive to it. Maggie cannot process cows milk, no diagnosis nothing is really wrong. But, her school understood and made meals that were free from cows milk and milk product.

K&H

Wouldn't it be similar to a family that wanted their child to avoid pork because of their religion? Or meat because they're vegetarians? I would hope that the school would work with you. Try to go into it as if they will be perfect and work well with you. Hopefully that will manifest good things!

Kari

As a teacher I can tell you we use a state-wide database of our students which includes birthdays, gender, allergies and food intolerances (among many other things). All teachers and support staff get a list of students and medical issues and allergies. The cooks post this list at the serving counter. At one school I even photograph the kids and we have their pics displayed inside the serving counter. This list of allergens includes everything under the sun from marshmallows to red dye #5. And there are always orders that they can consume nothing except what comes from home. We no longer allow kids to share food at meals or snacks to avoid accidental allergan contact.

What has really helped at my son's daycare is that M's mom sends in a batch of frosted cupcakes they keep in the freezers just for him when parents send in special snacks. I would suggest doing something like that as well for when they have special snacks.

JCAlaska

Sending you a facebook message to connect you with her. Hope that helps.

sara291

I don't have much time to type or read all the responces do sorry if this is a repeat. A boy I nannied for 3 years was on a similar diet & I know that play dough was something they had to have bought online since regular play dough can had the ingredients absorbe into the skin. After a while all the special meals seemed normal & did not take thought. It was the same when I took all dairy & soy out of my diet (for Riley). I went crazy!! I could hardly find meals. It was so expensive but then it just fell into place & overall it did get a lot cheaper. I did not even feel like I was on a diet after a while. It took a long time to take much dairy after weaning R since it just did not sound good.

cAtWmN84

i did go out to the school so i could talk with someone in person.she was very kind and told me it wasn't a big deal.i could just bring in a substitute in her lunch box and still be able to eat fruits and veggies,beans,meat from the cafeteria and anything i don't want her to have will show up on a computer when she's getting her lunch so this has put my mind at ease for sure!

the other school she was accepted into(well we didn't finish registering) said only they would provide lunches and they could do a substitute but the dr. had to write all that down and i don't think her ped is going to do that since her blood test came back normal.so then i asked if i could pick her up and feed her at home.they said no.anyway,that just seemd really weird to me.besides that,the other school is like the best rated school in the state and since she's in, that also means theres a spot for her when its time to go to kindergarten and any siblings get in too

Lindsay

As someone with a child who gluten allergy(which she does keep testing neg for by the way) not only caused the behavior probs but also bad bad diareah I would strongly caution you to send in Adri's food..That way you know that without a doubt what she is eating..The ladies at Lily's cafeteria mean well but aren't trained and didn't know didly squat how to feed her even though they said they would...It was too hard so we just send in a lunch box and snack..She ate breakfast at home..I kept gluten free frosted cupcakes in the freezer at school along with popcicles for ice creamday(every other friday:/) Plus some microwavable popcorn and some sweet tarts and gummies in the teachers desk she could have for impromtu treats(happens alot by the way)..Her teacher was very good about sending home notes when a child was going to bring something in and this school didnt' do holiday parties for the preschool..And even though Lily continues to test negative for the allergy her Ped did write out the allergy papers for the school because I demanded it...I am the parent and I know that she reacts and breaks out ect....And it is also a known fact that a child will test negative to a wheat allergy test if they are already off wheat/gluten..And I told Lilys ped that there was no way I was putting her back on it to test it..The impact was too great...She got it...:))

Oh and homemade lunchables are awesome for this age for school lunches:)Lily takes them to school at least 3xs wk...I found a lunchable plastic container at walmart and I put in Glutinos(round ) gf crackers,Hormels natural turkey or ham cut into rounds,veggie galaxy rice cheese cut into rounds(I get the soyfree kind)Fruit cup of somekind,2 vanilla kinni sandwich cream cookies and a small bottle of water...

Pizza lunchable...Udis pizza crust (I use a large wide mouth cup like a lrg Mcd pop cup to cut round circles for the crust)I send two,,a container of sauce(I use our favorite spagetti sauce,she loves it) Shredded Daiya mozzerella cheese,fruit cup /or pearsauce cup,pk of Annies organic fruitsnacks and bottle of water...She makes her own mini pizzas and either eats them cold or her teacher will warm them in the microwave for her...:))

This yr has been a great learning exsperience for me in the "making the food cool and healthy for her" dept...The school she is going to preK this fall in Michigan has a microwave and will assist her as well...I am excited for her to go and not worry about foods:))

TheOtherLovingMoms

If it is celiac disease then the only way to know for sure is by having an upper endoscopy done. The blood test isn't conclusive. If the blood test come back negative it could be because it is celiac disease.