Where To Begin?

[TJShannon]

Hello,

I have an 8 year old girl. We have done the blood test and it shows that she might have Celiac. We need to see the Doctor but we are expecting to have to do the biopsy. What things should be asking the Doctor? Also does the overwhelming feeling ever go away? And how do the kids adjust? Hopefully better than me. I am on the computer everynight researching everything and anything with celiac.

A Mom!

[Nic]

Hello,

I have an 8 year old girl. We have done the blood test and it shows that she might have Celiac. We need to see the Doctor but we are expecting to have to do the biopsy. What things should be asking the Doctor? Also does the overwhelming feeling ever go away? And how do the kids adjust? Hopefully better than me. I am on the computer everynight researching everything and anything with celiac.

A Mom!

You would be surprised how well children adjust. Luckily, my son was 4 when diagnosed so in time, if not now, he won't even remember what gluten tastes like. I really believe it would be a harder adjustment for older people who have a well established taste and are really used to the taste of gluten containing foods. The overwhelming feeling will go away once you have mastered the diet and see your daughter not only improving, but adapting to the diet.

Nicole

[Guest lorlyn]

Just wanted to say hey and welcome.

My 10 year old daughter was diagnoised in Nov-07 with blood work and a biopsy. When all of it happened I did not know what to ask the doctors because I have never heard of celiac disease. I am like you I have spent hundred of hours reading whatever I could find on celiac disease. It is very overwhelming. Her doctor told us that we would learn the most from this forum because he could only diagnosis the disease ,not on how to live with it. These people have given us so much info that it would had taken years to learn it on my own. My daughter has learned how to read labels and accepts the situation most of the time. The only thing I wished the doctors would had told us after the biopsy that you can have pain in your stomache because they put air in there to do the test. After we came home from the hospital and tried to take a nap she had very bad pain. We called the doctor back and he told us to give her a little bit of pain killer so she could sleep until the air went away. Now 6 months later it is getting easier to understand. I hope all goes well and keep in touch.

[taweavmo3]

I second the fact that kids adjust pretty easily...much better than adults I think. Kids are so resilient, it's amazing. It's easier the younger they are, but it can still be done. I have an eight year old son who just went gluten free this year, and although it was hard at first, he has no problem sticking to it now. I have found that giving him control over it really helps him stay compliant. We talk about good food choices quite a bit...what's in the food he eats, why it's healthy or not, and I let him help me in the kitchen as much as possible. So far, this approach is working, lol.

When we first learned that my daughter had Celiac, we read the Dana Korn book, "Kids with Celiac Disease".....that was a great starting point. Then I contacted my local R.O.C.K. (Raising our Celiac Kids) chapter, and they helped me get a few starter lists going, and even offered to set me up with a shopping buddy if I wanted. After that, I came to this forum with any and all questions......six months later, I felt like a pro, and gluten free living has been easy ever since.

It is a big adjustment, but it does get easier with time. And if your daughter does have it, you will find great motivation in watching her get better.....for us, it was like we had a totally different child, and it was amazing to watch. Good luck!

[girlfromclare]

If your child has had a lot of symptoms then you will really be relieved to see the results of the diet. It is marvellous. Our little boy was four when we put him on the celiac diet. He had behavioural and mood issues, very low weight and no weight gain at all in the past two and a half years, he had low immune system, very pale and was getting everything going.. after a few months on the diet his mood completely changed, he started to put on weight, he got healthier looking and happier... he was a different child. Beware of cross contamination. It will probably happen a bit until you get a handle on the diet... buy a different toaster!!! Thats a real important one.. it caused all sorts of problems for us with crumbs crossing over from our bread to his.. now he has his own toaster and it is so much better. Once you have had a few weeks to absorb all of this it wont seem so bad.. whereabouts are you living? You can get some great gluten free food... oh and watch out for dairy products. a lot of celiacs (most I think) have problems breaking down dairy and it can cause reactions until the intestine has had a chance to heal. might be no harm to rule it out for a while until you have got things under control and perhaps then you could re-introduce it back into the diet. I really hope you get on ok anyway. good luck and this is a great forum for asking questions or just reading back on old posts to get information.

Good luck

Liz (ireland)

[NoGluGirl]

Hello,

I have an 8 year old girl. We have done the blood test and it shows that she might have Celiac. We need to see the Doctor but we are expecting to have to do the biopsy. What things should be asking the Doctor? Also does the overwhelming feeling ever go away? And how do the kids adjust? Hopefully better than me. I am on the computer everynight researching everything and anything with celiac.

A Mom!

Dear TJShannon,

It is easy to be overwhelmed. Try not to be hard on yourself. This is a major lifestyle change! I can help you out. Don't worry, we are all willing to answer any questions you may have!

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

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:

Fritos

Tostitos

Lay's Original Potato Chips

Cool Ranch Doritos (Nacho cheese has gluten)

Act II Microwave Popcorn

Cheetos

3 Musketeers candy bars

Butterfinger candy bars

Reese's Peanut Butter Cups

Meat and Protein :

Eggs

Great Value Frozen Boneless, Skinless Chicken Breasts

Extra Lean ground beef

Carl Buddig lunchmeats all are safe

Johnsonville Original Bratwursts

Kraft Cheese Shredded or sliced (Kraft is a great company, they never hide gluten in their labels. If it does not say wheat, barley, oats or rye, then it is not in there!)

Cereals:

Cocoa Pebbles

Fruity Pebbles

Dora The Explorer Cinnamon Stars

Seasonings:

Durkee Cinnamon-ground

Durkee Ginger-ground

Durkee Chili powder

Durkee Vanilla Extract (in fact, all of their liquid flavorings, food colorings, and extracts are g.f.)

Emeril's Essence - Asian, Italian

Ortega Taco Seasoning (In fact, since they are under a very strict labeling policy, all of their products are gluten free at this time)

Miscellaneous:

Ortega Taco Shells

Starkist or Great Value Tuna

Butter Buds

Great Value Soy Milk

Lettuce

Tomatoes

Apples

Pears

Carrots

Great Value Canned Fruits and Vegetables

Del Monte Canned Fruits and Vegetables

Ore Ida Tater Tots

Ore Ida French Fries

Hormel Chili

Hormel Spam

Hormel Turkey Spam (Oven Roasted and Smoked)

Hormel Beef Au Jus Entree

Hormel Pork Au Jus Entree

Jimmy Dean Fresh Taste Fast Sausage (links, rolls, and patties)

Plumrose Bacon

PAM Non-Stick Cooking Spray (all except for PAM for baking; it has flour)

Beverages:

Coca-Cola (Diet, Regular, Vanilla, Caffeine Free)

Diet Rite

Folgers Coffees (all including Cappuccinos)

Luzianne Tea (We get decaf)

Arizona Teas

Ocean Spray Cranberry Juice

Some Household Items that are safe include:

Cascade Dishwashing Detergent

All Laundry Detergent

Wisk Laundry Detergent

Dawn Dish Soap (all including the Power Disolver)

SoftSoap Hand Soaps

Murphy's Oil Soap

Hygiene, Cosmetics, and Beauty Items:

Dove Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)

Crest Whitening Expressions Toothpastes

Colgate Toothpastes

Suave Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)

Maybelline (Gluten is clearly labeled when present)

CoverGirl (Gluten is clearly labeled when present)

Wet'n Wild (All except for one of the mascaras)

Olay Quench Body Lotion

Crest WhiteStrips

Colgate Simply White

I hope this helps!

Sincerely,

NoGluGirl

[TJShannon]

Dear TJShannon,

It is easy to be overwhelmed. Try not to be hard on yourself. This is a major lifestyle change! I can help you out. Don't worry, we are all willing to answer any questions you may have!

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

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:

Fritos

Tostitos

Lay's Original Potato Chips

Cool Ranch Doritos (Nacho cheese has gluten)

Act II Microwave Popcorn

Cheetos

3 Musketeers candy bars

Butterfinger candy bars

Reese's Peanut Butter Cups

Meat and Protein :

Eggs

Great Value Frozen Boneless, Skinless Chicken Breasts

Extra Lean ground beef

Carl Buddig lunchmeats all are safe

Johnsonville Original Bratwursts

Kraft Cheese Shredded or sliced (Kraft is a great company, they never hide gluten in their labels. If it does not say wheat, barley, oats or rye, then it is not in there!)

Cereals:

Cocoa Pebbles

Fruity Pebbles

Dora The Explorer Cinnamon Stars

Seasonings:

Durkee Cinnamon-ground

Durkee Ginger-ground

Durkee Chili powder

Durkee Vanilla Extract (in fact, all of their liquid flavorings, food colorings, and extracts are g.f.)

Emeril's Essence - Asian, Italian

Ortega Taco Seasoning (In fact, since they are under a very strict labeling policy, all of their products are gluten free at this time)

Miscellaneous:

Ortega Taco Shells

Starkist or Great Value Tuna

Butter Buds

Great Value Soy Milk

Lettuce

Tomatoes

Apples

Pears

Carrots

Great Value Canned Fruits and Vegetables

Del Monte Canned Fruits and Vegetables

Ore Ida Tater Tots

Ore Ida French Fries

Hormel Chili

Hormel Spam

Hormel Turkey Spam (Oven Roasted and Smoked)

Hormel Beef Au Jus Entree

Hormel Pork Au Jus Entree

Jimmy Dean Fresh Taste Fast Sausage (links, rolls, and patties)

Plumrose Bacon

PAM Non-Stick Cooking Spray (all except for PAM for baking; it has flour)

Beverages:

Coca-Cola (Diet, Regular, Vanilla, Caffeine Free)

Diet Rite

Folgers Coffees (all including Cappuccinos)

Luzianne Tea (We get decaf)

Arizona Teas

Ocean Spray Cranberry Juice

Some Household Items that are safe include:

Cascade Dishwashing Detergent

All Laundry Detergent

Wisk Laundry Detergent

Dawn Dish Soap (all including the Power Disolver)

SoftSoap Hand Soaps

Murphy's Oil Soap

Hygiene, Cosmetics, and Beauty Items:

Dove Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)

Crest Whitening Expressions Toothpastes

Colgate Toothpastes

Suave Soaps, Shampoos, Conditioners, Lotions, and Styling Aids (Will clearly label gluten if present)

Maybelline (Gluten is clearly labeled when present)

CoverGirl (Gluten is clearly labeled when present)

Wet'n Wild (All except for one of the mascaras)

Olay Quench Body Lotion

Crest WhiteStrips

Colgate Simply White

I hope this helps!

Sincerely,

NoGluGirl

[TJShannon]

Thanks for the help! It was nice to see a list of common foods she can have. I don't wish this on anyone but it nice to know that I am not alone. This week is a good waak but the waiting to findout is killing me.

Thanks,

A Mom

[NoGluGirl]

Thanks for the help! It was nice to see a list of common foods she can have. I don't wish this on anyone but it nice to know that I am not alone. This week is a good waak but the waiting to findout is killing me.

Thanks,

A Mom

Dear TJShannon,

You are so welcome! Going gluten free is expensive. Once in a great while, I actually get to treat myself to Glutino Bars, that are similar to Nutri-Grain bars, but they do not give me the heaves! I am glad I finally know what they heck was making me so ill! Pamela's Chocolate Chip Cookies are pretty good, too! If you need recipes, just holler! I play around in the kitchen all the time!

There are some tasty options. The good news is with Kraft, they clearly label gluten if it is present. So, a lot of stuff is allowed from them!

Waiting for those test results is nerve - wrecking! My blood work was negative many years ago, and it turns out it was wrong! However, I have not done the Enterolab stool tests and gene tests yet. They are said to be very accurate. The total cost is $380. Considering it tests for the Celiac and Gluten Intolerant genes, as well as casein, soy, and eggs, plus malabsorption, that is a good deal. I hope to be able to afford it. Right now, I am not well enough to work. Besides Celiac, there are numerous other issues that need to be tested for. Good luck and keep us updated! Let us know when the results come in!

Sincerely,

NoGluGirl