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lhopland

My 13Yr Old Daughter

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My 13 yr old daughter, Jessi, was diagnosed with Celiac today. We are very confused. We thought we were doing good today, she had an egg and banana for breakfast, for lunch she had fruit, green beans and carrots both at the hospital. She was discharged and came home for dinner. She had a baked chicken breast with no seasoning and some plain white rice. With in 2 hours she was sick again. I don't know what happened. I don't know what the next steps are. We need help, please.

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If she is newly diagnosed and has damage to the small intestine, then until the healing process makes some progress she may react to anything, even if it is gluten-free. It will take some time. How long varies with age and the extent of the damage to the villi. But think in terms of weeks, or possibly months, before things are back to "normal." Stay strictly on the gluten-free diet, and over time things should get better. In the early stages of recovery, it is best to avoid dairy. Secondary lactose intolerance is common with celiac disease, as lactase, the enzyme required to digest lactose, is produced by the villi.

If she continues to have problems on a gluten-free, dairy-free diet, consider soy. It is another intolerance common among us.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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It can take a while to heal and we often have some ups and downs. Do be aware of cross contamination issues. If non-stick pans are scratched get new ones for her food. She should not be using the same toaster as the rest of the family get her one for just her gluten free bread. If her rice had butter on it and someone has double dipped a knife even just one stray bread crumb could be an issue. She needs her own condiments, nut butters, jellys etc. Get a new dedicated colander and cutting boards. If the baking sheets have been used for gluten foods make sure you put her food on foil.

Hopefully she will be feeling better soon. By the way if the doctors didn't tell you the whole family needs to be screened for celiac even if they seem to be symptom free. It is pretty rare for there to be just one in the family as it is strongly genetic.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I just wanted to add that you are doing the right thing in feeding her only natural foods. In the beginning (and I'm talking at least six months), it's safer to eat only natural foods because even gluten-free processed foods can cause difficulties for some people. When I say "natural," though, I'm not saying that she has to eat everything plain--you'll soon learn what is safe for her to eat, and you'll be able to prepare some tasty meals for her. Learning to bake gluten free can be a little difficult at first, too, but all I do is use my standard recipes, use Bob's Red Mill All-Purpose Gluten-Free Flour instead of wheat flour, and add 2-4 teaspoons of xanthan gum--and the food turns out great. For cookies, you may have to add a minute or two to the baking time, and when you pull them out of the oven, let them sit for 1-2 minutes on the cookie sheet and then VERY CAREFUL remove them with a spatula to let them cool. When hot, gluten-free cookies are very soft, but if you can get them safely removed from the cooking pan, they'll be fine once they've cooled.

Also, for some newly diagnosed celiacs, it can be difficult to tolerate dairy, soy, and nightshade vegetables. You might try eliminating these foods and then introducing them back one by one.

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Likely she was cross contaminated at the hospital, too.

If hospitalized in America, bring your own gluten free safe food, and don't let anyone feed you that hospital junk.

You are going to have to make a decision whether to keep a gluten free house and menu, or at least have a dedicated kitchen area for your daughter and any other relatives who might end up with the same diagnosis, since this tendency is hereditary. (my husband voluntarily went gluten free at home, which makes life much simpler here, but it is just for the two of us, and we both cook. it did not require much of a change at all for him, other than he switched brands of cereal and he now gets to eat more home baked goods, as the meals were pretty much the same, just gluten free. I keep a lot of gluten free flours around and grind my own nuts for almond meal. )

To avoid cross contamination, much of the cookware that your daughter needs to stay safe may have to be replaced and dedicated to gluten free cooking. This means the non stick surface teflon type pans, baking pans with baked on residue, silicone mats, rubber spatulas, wooden spoons, cutting boards, colanders, the toaster, tupperware that may have stored gluten items before, etc. Wash your potholders or get new ones if the current set are scummy with gluten.

Do buy a package of sharpie permanent markers and start marking up your new stuff as the "gluten-free" items.

Also, Paper Towels are Your Friends. You lay them down on any work surface and it's now clean.

For condiments, as ravenwoodglass has pointed out, you also need a duplicate gluten free set. That double dipping thing with people just using the same spoon or knife over and over again gets gluten all over the place. When I bake, if I'm spooning something out of a bag or container, I always use a fresh spoon for each storage container, just in case something in the line of ingredients is cross contaminated. I've had practice tracking down the one item in the chain that was ruining everything I baked, and this is how I ended up handling it. I've watched my husband spoon stuff out of a jar, like salsa or peanut butter, and rub it on something and then re - dip, without thinking, and all I can say is, I'm glad that everything here is now gluten free or one of us would be driving the other crazy. :ph34r:

At first this may seem overwhelming, but just do it in pieces. Like, prioritize, this stainless steel stuff is fine, this ceramic is fine, this has to go right now because we use it daily. I put myself on the New Baking Pan of the Week Plan and replaced some of them that way.

If you have indoor pets, you may also want to go to a gluten free food for them, especially if it's something that sleeps on the bed and grooms itself a lot, or drools. ( I ended up with two dogs with wheat allergies, same half breed from the pound, and the dogs were getting cross contaminated by the other pet food, when the other pets drank out of the same water dish, and it was easier to take them all off of it. My one dog's reactions exceed mine by a factor of 10. :blink: ) This way it's just one less source of gluten contamination to worry about, and you may end up with a healthier pet, anyway.

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My 13 yr old daughter, Jessi, was diagnosed with Celiac today. We are very confused. We thought we were doing good today, she had an egg and banana for breakfast, for lunch she had fruit, green beans and carrots both at the hospital. She was discharged and came home for dinner. She had a baked chicken breast with no seasoning and some plain white rice. With in 2 hours she was sick again. I don't know what happened. I don't know what the next steps are. We need help, please.

You are doing just fine. It took me a couple weeks gluten-free for my stomach to settle down, much longer to have no GI issues at all. I also couldn't tolerate dairy for about nine months. It's pretty typical for newly diagnosed celiacs to have trouble with dairy.

As others have said, whole, natural gluten-free foods are absolutely the way to go. Fruits, veggies, rice, potatoes, eggs, legumes, nuts, seeds, and home-cooked meats and seafood will make her well again. Keep processed foods to a minimum until you get her healed because they sometimes have traces of gluten. (They're overpriced anyway!)

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Likely she was cross contaminated at the hospital, too.

If hospitalized in America, bring your own gluten free safe food, and don't let anyone feed you that hospital junk.

You are going to have to make a decision whether to keep a gluten free house and menu, or at least have a dedicated kitchen area for your daughter and any other relatives who might end up with the same diagnosis, since this tendency is hereditary. (my husband voluntarily went gluten free at home, which makes life much simpler here, but it is just for the two of us, and we both cook. it did not require much of a change at all for him, other than he switched brands of cereal and he now gets to eat more home baked goods, as the meals were pretty much the same, just gluten free. I keep a lot of gluten free flours around and grind my own nuts for almond meal. )

To avoid cross contamination, much of the cookware that your daughter needs to stay safe may have to be replaced and dedicated to gluten free cooking. This means the non stick surface teflon type pans, baking pans with baked on residue, silicone mats, rubber spatulas, wooden spoons, cutting boards, colanders, the toaster, tupperware that may have stored gluten items before, etc. Wash your potholders or get new ones if the current set are scummy with gluten.

Do buy a package of sharpie permanent markers and start marking up your new stuff as the "gluten-free" items.

Also, Paper Towels are Your Friends. You lay them down on any work surface and it's now clean.

For condiments, as ravenwoodglass has pointed out, you also need a duplicate gluten free set. That double dipping thing with people just using the same spoon or knife over and over again gets gluten all over the place. When I bake, if I'm spooning something out of a bag or container, I always use a fresh spoon for each storage container, just in case something in the line of ingredients is cross contaminated. I've had practice tracking down the one item in the chain that was ruining everything I baked, and this is how I ended up handling it. I've watched my husband spoon stuff out of a jar, like salsa or peanut butter, and rub it on something and then re - dip, without thinking, and all I can say is, I'm glad that everything here is now gluten free or one of us would be driving the other crazy. :ph34r:

At first this may seem overwhelming, but just do it in pieces. Like, prioritize, this stainless steel stuff is fine, this ceramic is fine, this has to go right now because we use it daily. I put myself on the New Baking Pan of the Week Plan and replaced some of them that way.

If you have indoor pets, you may also want to go to a gluten free food for them, especially if it's something that sleeps on the bed and grooms itself a lot, or drools. ( I ended up with two dogs with wheat allergies, same half breed from the pound, and the dogs were getting cross contaminated by the other pet food, when the other pets drank out of the same water dish, and it was easier to take them all off of it. My one dog's reactions exceed mine by a factor of 10. :blink: ) This way it's just one less source of gluten contamination to worry about, and you may end up with a healthier pet, anyway.

Great advice! I'm in my 8th month gluten free. I use sharpies a lot to lable the non gluten "mom" To "kids" gluten items. I use gallon size baggies to put all my produce etc in. Anything mine that can fit into a bag goes there. I have the top shelp everywhere and a section that is only for me. Two toasters etc. It is overwhelming at first, but trust me, it gets better. I stopped eating gluten-free replacement foods and eat as much whole natural foods. I use paper towels like crazy as well. I'm sure a lot of the parents here that have Celiac children can help you alot!BTW welcome amd hugs!


How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in your life you will have been all of these.

George Washington Carver

Blood work positive 4/10

Endo biopsy positive 5/10

Gluten free 5/10

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The beginning is always so much tougher, but to parrot everyone else: it gets better. My daughter will turn 13 this year, and she was diagnosed about a year ago.

Almost everyone I've spoken to who has been in a hospital and had to eat gluten free there has become ill from the food. The hospital cooks just don't seem to have a good handle on cross contamination practices, it seems to me.

For your own kitchen, to avoid cross contamination - the easiest way to think of it at first, I think, is to view gluten as raw meat. Raw meat that you can't cook enough to make safe.

So you get a separate cutting board for gluten and non-gluten items. Nothing that touches gluten should touch the non-gluten items without being washed first. Crevices have to be able to be scrubbed clean or they can re-contaminate with gluten. And everyone washes their hands after they touch gluten, or before they touch the non-gluten food, whatever you'd usually do to feel safe with all this 'raw meat/gluten' around the kitchen.

It's a good idea to get your daughter used to washing her hands before they touch her lips, ever. Because she'll be around gluten constantly, and touching a counter at someone's house and then her lips can be enough to make her sick.

We ended up having everyone wash hands after touching gluten, just because it was so easy to get it on other items. For example, we couldn't keep our gluten free family members safe when our kids would open the loaf of bread, get out a slice, and then close it back up and put it back on the shelf and close the cupboard door. Because they contaminated the outside of the bag with gluten as they closed it up, and potentially the cupboard door as well when they closed it after putting away the bread.

I'd second getting everyone tested. We had one celiac in the family for years and never tested anyone else. When I was positive for it, we decided to get it done. Four of the five people tested ended up positive, even though they had no symptoms we would have associated with the disease. And getting retested every few years is a good idea, as the disease can trigger at any time.

Also, a few weird places that have gluten that could have gotten your daughter without even realizing:

1) lipstick or chapstick - that's usually got gluten. Lots of makeup can have gluten...even mom's, if she kissed your cheek or some such and you had a base powder on with gluten, that'd do it.

2) shampoo, lotion, or soap - if she took a shower and some of the shampoo or soap was washed off her hair or face and she got a little of that soapy water in her mouth - that can have gluten, too. If she uses lotion that had gluten and she, say, chewed on her nails, that can get her, too.

3) Feeding the pets - they often have gluten in the food, especially bird seed.

4) raw poultry - some raw poultry now have injected broth, so there's a chance of gluten contamination, there. They have to declare the broth injection on the package, though, I believe.

5) Was the pan you used for the chicken and for the rice scoured out thoroughly before use? Sadly, the pots and pans can be germ free before they are gluten free. Think about how hot you get the oven to cook biscuits. The germs would die in that oven at that temperature, but the gluten is happily existing at 450 F or higher, still easily making celiacs sick. Things that have been cooked with gluten need to pretty much be scoured out really well if they have nooks and crannies. The dishwasher seems to do all right for smooth glassware that's contained gluten.

6) and in that vein - the sanitizer gels that you see available work great on germs, but they don't work any better at cleaning off gluten than water would. Soap and water are required for your daughter to get her hands clean of gluten whenever she's out. The sanitizer just kind of moves the gluten around like a square dancer.

Wishing you good luck. It's a real challenge at first, but it improves when your little one starts to feel better. Compared to the pain, the diet is SO much better.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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I haven't read through all the responses tonight, so someone might have already suggested this. A good thing to do would be keep track of exactly what she is eating and how she is feeling. This will make it easier to find out if there are other foods that are causing problems. Good luck.

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Hi, I went gluten free at 13 as well.

It took me atleast a full month before my main symptoms went away, and it took a long time before I felt 100% better. Stick in there, it will be worth it. I feel so great now, its just hard at first and there is a lot of damage to be healed.


'You can't start building a better tomorrow if you wait until tomorrow to start building'

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