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Toddler- Undiagnosed But Suffering


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11 replies to this topic

#1 Ayla'sMama

 
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Posted 24 April 2012 - 06:58 AM

Hello! I am Nicole, and my daughter Ayla is 19 months old. she sees a ped. GI dr and he did the celiac test but it came back negative. she has many symptoms of Celiac and so i discussed a gluten free diet with her reg ped. and decided to try it. i have NO IDEA what im getting into, all i know is that my daughter is suffering and it is killing me.
her symptoms are- shortness (1% for height), weight loss (from 70% to 25%), easily bruises, constipation, lactose intolerance and a few others that i cant think of right now.

she has been suffering like this since birth (with the constipation) and it has been a long struggle for both of us. i am dedicated to doing the gluten free diet but im really struggling with knowing what exactly i can/cannot give her. i need some good snack ideas as well as some tasty healthy dinners that she will enjoy. she eats lots of fruits and veggies with no problem, but what other things are safe for her???
help! thanks :)
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Ayla's Mama :) Nicole

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#2 ravi

 
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Posted 24 April 2012 - 12:10 PM

Hi, I'm a journalist working on a story about how lactose intolerant kids' parents are dealing with the issue of buying food products that usually has higher level of chemicals such as Arsenic and other materials in general. Would appreciate to talk to you Ayla'sMama. Please contact me if you can.
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#3 notme!

 
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Posted 24 April 2012 - 01:07 PM

hello, nicole - 19 months, she is eating all 'people food' now, isn't she? yes, fruits and veggies are all naturally gluten-free. as are unprocessed meat/poultry/fish. potatoes and rice and corn as well. i subbed bread, pasta and cereal (fruity & cocoa pebbles, chex (except for whole wheat chex) cereals) grits are gluten free. eggs, corn tortillas, rice cakes, etc. you will probably want to lay off the milk products for a while and she might be able to handle them once her digestive tract settles down.

it is a big undertaking - good for you - your child's health is worth it. plus, you might save $ on diapers and laundry soap :) this is a good place to come with questions. good luck!
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arlene

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#4 pricklypear1971

 
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Posted 24 April 2012 - 01:25 PM

Big hugs to you, mama!

Been there, done that with the constipated baby. Sigh.

Fruits, veggies, meats will all be gluten-free.

For snacks you can buy gluten-free crackers. You can buy gluten-free pastas, too. Breads come gluten-free.

Learn to read labels on foods. Many mainstream items are gluten-free if you know what to screen out. http://www.celiac.co...ents/Page1.html

Baking can be a challenge but there are tons of good gluten-free recipes out there. Google "gluten free blog" and see what you come up with.

A good book about Celiac may help you. Lots of people reco Gluten Free for Dummies - Dana Korn (I think I got that right).

A big thing will be to de-gluten your house. Soap and water will do it for most surfaces except the grill (oven cleaner or change the grates), colanders generally need to be replaced since gluten is like glue in mesh, wooden spoons should becreplaced, as well as scratched Teflon pans and plastics.

You can reseason iron skillets by placing them in the oven on 500 or so until a white film forms - that's the seasoning burning off - then reseason.

You will need a dedicated gluten-free toaster for her, or use an oven-style toaster. Toasters are supposedly impossible to clean.

You'll probably need to be vigilant about keeping her hands clean while out - she will touch/pick up lots of things and then put hands in mouth.

Did her ped test her for vitamin/mineral deficiencies? That may be something to look at to help her recovery.

Good luck, andrews asking questions!
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#5 Ayla'sMama

 
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Posted 24 April 2012 - 02:39 PM

Thank you guys!! It has been very very hard on both me and her. I have been insisting to her drs that something is wrong for what seem like forever. i felt like no one was listening to me, and got told "oh just use more miralax" more than i care to count. a co-worker told me about her son going through the exact same thing as Ayla and his diagnosis of celiacs disease. when i found out what celiac disease was i knew i was onto something. no diagnosis has been made, but im very very hopeful that this gluten free diet will help. we have only being doing it for 3 days now, but ive been reading up on what celiac is and learning a lot. thankfully she loves her fruits and veggies, so no change there, but the bread and pasta- thats gunna be a huge change for her. i went and got gluten free pasta and bread at the store (holy moly how expensive! and totally worth it too!) and she doesnt seem to notice the difference. in fact, i would even go so far as to say she likes the gluten free cheese crackers i got her better than her old crackers :P my biggest hope is that this works, i can do this forever and never have to see my beautiful daughter cry out in pain from attempting to go to the bathroom again. it breaks my heart to see my normally very happy bubbly beautiful little princess turn red in the face, get a huge, rock hard stomach, and cry uncontrollably. ive cried with her so many times, and i feel like this board, this diet, this lifestyle will really turn things around for us.

any idea how long it will really take to see a change?? i read somewhere it could take 3-5 days, but that seems so quick i wasnt sure. she pooped today, no problem, no straining, didnt even notice she had gone to the bathroom until i smelled it. Thats a huge huge accomplishment, but i dont necessary think that is a total fix.

because she is so young, is there any chance of improvement in her height/weight? shes a tiny shrimp of a kiddo and i am worried she will never grow to a normal healthy size! her ped said she would be kind of skinny naturally because i have never been that big and her father is also very skinny, but we are both at least in the normal range for height/weight.
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Ayla's Mama :) Nicole

#6 alex11602

 
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Posted 24 April 2012 - 03:22 PM

Welcome to the board!

As far as growing, my daughter was 15 months when we figured out her food problems and at the time she was 17 lbs 5 oz and 23 in long, she is now 30 lbs and 32 1/2 in long (that is in 14 months). She started showing signs of improvement within a few days of going gluten free although it did take longer then that for all her symptoms to go away. My daughter also loves fruits and some veggies, for cereal she likes Chex cereals, Berry Berry Kix and Dora the Explorer cinnamon stars. She sometimes likes smoothies and she sometimes gets Enjoy Life cookies as a treat. Other then that we pretty much stick to meat, rice and potatoes (she absolutely adores homemade baked fries).

Good luck with your daughter and I hope she gets to feeling better really soon!
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#7 pricklypear1971

 
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Posted 24 April 2012 - 04:33 PM

You might try adding a bit of probiotic to her drink? That could help her GI tract repopulate. I have had a horrible time finding one that will mix in to a liquid...maybe make a smoothie or find a liquid form? Screen it for gluten

Also, she may have an easier time if you pull her off cows milk for a while. If she is Celiac she may have a temporary or permanent intolerance to it. If she is having normal bm's that's a good sign...hopefully milk isn't a problem but if you notice distress and you're sure she didn't eat gluten you may think about milk.

Read on the parents board here. Many people have stories of growth gains.

Perhaps you're dealing with non Celiac gluten intolerance - which is exactly what it sounds like. There's no test for it except a gluten-free trial to see if you get relief from symptoms.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#8 alex11602

 
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Posted 24 April 2012 - 04:35 PM

You might try adding a bit of probiotic to her drink? That could help her GI tract repopulate. I have had a horrible time finding one that will mix in to a liquid...maybe make a smoothie or find a liquid form? Screen it for gluten


Culterelle makes a powder one for kids to mix into things.
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#9 Ayla'sMama

 
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Posted 24 April 2012 - 05:01 PM

Prickly- her father is actually allergic to milk/dairy (not just intolerant but allergic) and i believe that is where her intolerance for milk comes from. we have had her on soy milk since she was about 13 months old. when she was on cows milk she would only go poop like once a week it was very very bad. i knew it was more though because even on soy milk she has a very hard time going poop. (it feels so strange telling ya'll about Ayla's poop lol)i have never tried a probiotic- but i may now. thank you for the tip, im definitely going to look into that and see if it helps :)

alex- thank you :) im glad to know that there is definitely hope for her growth, thats awesome! im glad your daughter is doing well, hope that she keeps on growing :) i am going to look up culterelle and see if i can find it in the stores around here :)
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Ayla's Mama :) Nicole

#10 pricklypear1971

 
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Posted 24 April 2012 - 08:01 PM

Prickly- her father is actually allergic to milk/dairy (not just intolerant but allergic) and i believe that is where her intolerance for milk comes from. we have had her on soy milk since she was about 13 months old. when she was on cows milk she would only go poop like once a week it was very very bad. i knew it was more though because even on soy milk she has a very hard time going poop. (it feels so strange telling ya'll about Ayla's poop lol)i have never tried a probiotic- but i may now. thank you for the tip, im definitely going to look into that and see if it helps :)

alex- thank you :) im glad to know that there is definitely hope for her growth, thats awesome! im glad your daughter is doing well, hope that she keeps on growing :) i am going to look up culterelle and see if i can find it in the stores around here :)


Wow. Sounds familiar.

Our son had what we assumed was milk protein intolerance, so he was on Nutrimiagen and breastmilk and I was mf and soy free because he seemed to have a problem with soy formula too. I was pumping - he wouldn't nurse but did do much better on breastmilk if I was df. That was a long 8 months - I couldn't do it anymore. Mastitis, yeast infections(which ends up was probably DH), and a failing thyroid.

Anyhow, his bm's were better (not stopped up except rarely) but random bouts of d and some c. I never could figure out the cause...now I suspect it was/is gluten.

Doctors were of no help.

We ran Celiac panels on him but all was normal. We'll retest every year. He isn't exactly wanting to go the gluten-free route - he's 9. Our home is gluten-free but I can't change what he does at school and at friends houses.

My stepson is truly allergic to milk, and I wouldn't be surprised of he has a gluten problem. He got a rash from milk as a kid, and still gets cramps and d from it. But he still eats it and he has jaw formation issues and is rail thin and is, I believe, stunted in growth ( he was soooo high on growth charts then just stopped). He also has migraines, etc.

I'm glad you know she has a milk problem....stick with it. they say milk intolerance can cause villi blunting, too.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#11 Ayla'sMama

 
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Posted 24 April 2012 - 08:18 PM

its really frustrating when you, as the parent, knows that something is wrong and the dr's just wont listen to you, or dont agree with you. they are not there with your baby every day like you are and they can run all the tests they want to and sometimes still not have an answer. its been month after month for almost 2 years with me and Ayla like this and i finally just stepped back and decided to take action myself. it was not the drs idea to do gluten free- it was mine, and i cleared it with her pediatrician after i thought about it. thankfully her ped is amazing and is willing to help me do what i think is best. when Ayla pooped today without any grunting or straining i was so shocked. i was happy, excited, i cant describe it. she hasnt done that in sooo long, i almost cried. who woulda thought that i would ever get excited about poop lol

im very dedicated to this, have bought some gluten free foods already (not a ton tho, we live in the midwest and unfortunately not a lot of places carry a good selection of gluten free products) and am working on finding some more resources.

is yogurt gluten free? wasnt sure on this one and i saw some that were in the gluten free section but the packaging did not specifically say gluten free so i was unsure and didnt buy any. Ayla loves yogurt so if thats safe she will be a happy camper! she wasnt too pleased this morning when i gave her her gluten free hot cerel and no yogurt lol i substituted a glutino cerel bar (she already loves those!) but i got the feeling she wasnt too happy with me lol

Kids and their 'tudes :P gotta love em! i never thought my 19 month old would give me attitude.... but she does. its all over her face sometimes, makes me laugh so much!
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Ayla's Mama :) Nicole

#12 LuckyAtlas84

 
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Posted 25 April 2012 - 10:22 PM

Just let you know, I dont have any kids of my own.

but just saw that you mentioned that you are living in midwest. you are right, it is harder to find gluten free food in stores around in midwest. I am midwest resident as well, I has been working on find all gluten free and in different store chains and locations.
Local grocery stores would sometimes carry some kind of items that are naturally gluten free like cream of rice right next to cream of wheat etc. Most of time local grocery stores dont carry items like gluten free processed items but would carry the common naturally gluten free items like grits, rice etc. but Kroger's do have their own healthy section for all organic and health foods, which do carry certain items.

Mejier's do have their own section of gluten free which is great! but i am still struggle to find freezer section for gluten free things. i am still working on that.

Walmart would be bit much cheaper in many items that mejier and kroger carry. Just that Walmart can be bit unpredictable and varity in locations like certain locationthat locals tends to buy certain items very frequently which will sell that item all the time For other location, it would only sell once or twice per year.
For example, like my walmart only sell boxes of crunchmasters P crackers} around holiday time between thanksgiving and christmas. So, it is all game like scaveage hunting for certain items.

However, as time go by i learned that it is much cheaper by just find things that are not processed and I view gluten free processed foods as special treats like time to time. certain pasta can be picked up on sales etc and only use few time per month to save money. Rice is much cheaper to buy because we can buy five lb of rice and it would last awhile. I would buy gluten free baking flour mix. I love pamela's myself but i dont know aobut other flour mixes. i can use pamela's to replace regular flour in recipes etc.

sorry if I am rambling. ;) Just thought to give my view on how to get kind of food on the budget and both of you can eat to save money and time on cooking. You can do it and you are wonderful mother to your kid! she is lucky to have you! Plus Pinterest would help you to find references to blogs and recipes on internet for all gluten free recipes that would help give you ideas for preparing snacks and meals easily.

I am planning on go to book stores and look thru gluten free books to see if any of book are useful to me. I am pretty sure there are some book that focus on kids and gluten free snacks.

:)
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Still in process of searching for answers to my symptoms

Disagnosed with PCOs Dec 2010
Disagnosed with Asthma Sept 1993




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