Newly Diagnosised And Questions

[mom22kids]

We just found out yesterday that our daughter (she's 5) tested positive for Celiac Disease. I've been reading everything I can get my hands on. I do have some questions and I apologize if they have been answered already. I just missed it.

Will she be awake for the endoscopy? How long is the procedure? Will there be any pain afterwards or discomfort? We have the appointment with the gastroenterologist next week. My guess is that the endoscopy will be the next step.

Are there any other parents whose children also have SID (Sensory Integration Disorder)? Once they are on the diet did you see the SID diminish any?

My daughter has never complained of any pain, but then at one point she had a very high tolerance to pain. More than other children. Now she is the opposite, but doesn't complain of any type of pain on the inside of her body. She only gained 3 pounds in the past year and that is what prompted me to ask her doctor. Actually the pediatrician she had before said she just had a very high motabalism and that I should be lucky. I knew there was something not right. She constantly ate (more than adult) and never seemed to gain weight. She doesn't have any of the symptoms except low weight gain and in fact slipped down on the percentile chart from her last check up.

We do have behavior problems, but at the time we attributed it to RAD. We went through therapy and do feel she had RAD, but still see moody behavior, etc. Behavior that I have read about that is typical with celiac disease. How quickly once on the diet did you see an improvement?

Is there such thing as different levels of celiac disease? For instance, mild? etc.

Easter is coming up...what do you do? We have never done alot of candy in the basket, we still do some.

Are there any websites on celiac disease that are specific to children?

[Juliet]

I don't know of any websites for children, but Dana Korn's "Kids with Celiac Disease" is a great book to start on how to adjust your life and also explain it to your child. There is also a support group possibly near where you live: ROCK (Raising Our Celiac Kids). You can find the website and see if there's a group near you:

https://www.celiac.com/st_prod.html?p_prodi...-13107497330.fb

But I find I get more information about food, how to deal with the disease, new info, etc., from the actual Celiac Disease Foundation support group:

Open Original Shared Link

There are different levels of damage from the disease, but once you have it, you have it. If you are continually exposed to gluten and you have the disease, you will get sicker and sicker and get more and more damage. The longer you are exposed to gluten, too, the more added complications and risk of other autoimmune diseases (diabetes, thyroid problems, rheumatoid arthritis, etc.) and cancer increase as well. Once officially diagnosed, your daughter will always need to be gluten free, this includes avoiding all cross contamination.

My son had the endoscopy when he was two, and he was asleep during the time. They didn't put him under until the very last minute, and brought him back to us as soon as he woke up and was even still groggy. The only side effect at the time was immediate: he got a little nauseous when he first tried to drink water. After that he was fine - no pain at all. Within two hours after the procedure was over, he was running around like nothing had happened. I also had an endoscopy done as an adult for other reasons a few years ago - I was awake but sedated so that I couldn't remember what happened. Once the drugs were out of my system, I felt fine the rest of the day. So, it's not just a "kid thing" that you recover so quickly. Most likely the endoscopy is the next step, and your doctor may want you to keep your daughter on gluten until the endoscopy is completed.

Symptoms of this disease vary so widely: several have had no pain but mood, attention, and hyperactivity have been real problems, even fibromyalgia, ataxia, and nerve damage for adults. I am not a doctor and cannot say with any real certainty, but it seems that your daughter's SID could be a side effect of the disease. There was a great post here on Neurological Celiac Disease a while back, but I don't remember where it's located. You could do a search if you wanted.

With children, you will see a fairly dramatic difference once going gluten free in a short amount of time. We saw dramatic recovery with our son in just 10 days. I've read posts here with people who had children with behavioral issues and gluten who saw a difference in just 3 days. It's hard at first to understand the diet, but once you get used to it, it becomes routine. It's more work, but soon you won't realize you're really doing more than what you used to do.

Good luck, and ask as many questions as you want or need - There's an amazing amount of knowledge around here. I've learned more in the last few months about this disease than I did the first year of having a child diagnosed with this disease since I began coming to this site.

[NoGluGirl]

We just found out yesterday that our daughter (she's 5) tested positive for Celiac Disease. I've been reading everything I can get my hands on. I do have some questions and I apologize if they have been answered already. I just missed it.

Will she be awake for the endoscopy? How long is the procedure? Will there be any pain afterwards or discomfort? We have the appointment with the gastroenterologist next week. My guess is that the endoscopy will be the next step.

Are there any other parents whose children also have SID (Sensory Integration Disorder)? Once they are on the diet did you see the SID diminish any?

My daughter has never complained of any pain, but then at one point she had a very high tolerance to pain. More than other children. Now she is the opposite, but doesn't complain of any type of pain on the inside of her body. She only gained 3 pounds in the past year and that is what prompted me to ask her doctor. Actually the pediatrician she had before said she just had a very high motabalism and that I should be lucky. I knew there was something not right. She constantly ate (more than adult) and never seemed to gain weight. She doesn't have any of the symptoms except low weight gain and in fact slipped down on the percentile chart from her last check up.

We do have behavior problems, but at the time we attributed it to RAD. We went through therapy and do feel she had RAD, but still see moody behavior, etc. Behavior that I have read about that is typical with celiac disease. How quickly once on the diet did you see an improvement?

Is there such thing as different levels of celiac disease? For instance, mild? etc.

Easter is coming up...what do you do? We have never done alot of candy in the basket, we still do some.

Are there any websites on celiac disease that are specific to children?

Dear mom22kids,

I do not know much about the other things, but can tell you the endoscopy some people are awake for, some are not. You can request to be asleep. It is not a pleasant experience, but the docs I had were not aware of anything anyway. I also can help you with a list of things you can find at the regular grocery. Here is a list of safe gluten free foods:

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 Vienna Sausages

Plumrose Bacon

Jimmy Dean Fresh Taste Fast Sausage

Thai Kitchen Original Pad Thai

Idahoan Instant Mashed Potatoes

Dinty Moore Beef Stew

Kraft Jell-O Pudding and Gelatin Cups (Kraft always clearly labels gluten if present)

Also be careful to make sure you do not accidentally gluten your child with cosmetics and household items. Here some safe things:

Hygiene items:

SoftSoap hand soaps

Colgate Toothpastes (all)

Crest Whitening Expressions Toothpastes (all)

Suave Shampoos, Conditioners, Lotions, and Styling aids (company clearly labels gluten if present)

Dove Soaps, Shampoos, Conditioners, Styling aids (clearly labels gluten if present)

Household items:

All Laundry Detergent

Wisk Laundry Detergent

Cascade

Dawn Dish Soap (all including Power Disolver)

Murphy's Oil Soap

Cosmetics and Beauty Aids:

Revlon LipGlides (I am wearing Sparkling Sangria in my avatar)

CoverGirl (Clearly labels gluten when present)

Maybelline (Clearly labels gluten when present)

Wet'n Wild (all except one of the mascaras)

Johnson's Baby Oil

Vasoline Petroleum Jelly

I hope this helps a bit!

Sincerely,

NoGluGirl

[Cam's Mom]

Hi!

My daughter was diagnosed last year when she was 5 also. She did have the endoscopy and was completely asleep for the procedure. She never even knew what happened. We just told her the doctor needed to have a good look at her belly and she needed some sleepy medicine so that she would not be wiggly (being an extremely wiggly kid she understood that this would not be possible if she were awake). To this day she has no idea what the actual procedure was. She felt no side effects at all. The only part for her that was bad was that they put an IV in her hand while she was asleep so she woke up with it in and was upset that there had been a needle involved (even though she didn't feel it). The worst part for me was being in the room with her while they "put her under" that was really hard for me to watch. But she had us with her and her favorite stuffed animal. Then we were asked to wait in the waiting room and 10 very long minutes later it was all over and she was waking up in the recovery area - no problems!

As for Easter candy - no worries! There are tons of gluten-free candies out there (m&m's, hershey's kisses just to name a few). Here is a gluten free candy list:

Open Original Shared Link

Not too sure about the behavioral issues, my son has SID (and surprisingly not Celiac). I do know other parents of children who have autism and celiac and they report that the behavioral change is quick (like 2 weeks) and dramatic. I hope that is the case for you. My daughter reports that she doesn't miss the old foods because everything we make at home is so good and she really doesn't even remember what the old stuff tastes like. This is one of the blessings of a young diagnosis. The one thing she misses is going out to eat and the freedom to eat at friend's houses. But she knows that feeling well far outweighs any of that.

You will get the hang of the diet quickly and hopefully will see very rewarding results! Good luck with the endoscopy, it will be fine!

Barb

[NoGluGirl]

Dear mom22kids,

Easter candy is often pretty easy for us to have, unless it also needs to be casein free. However, if you find out your child needs casein free, gluten free chocolate, just go to www.choclat.com

where you can purchase some delicious and safe candy (they have kosher items too) for your little girl.

I got their cake mixes, and they are so good! They are also the least expensive I have seen! Here is a basic list of Easter Candy I know is safe:

Marshmallow Peeps (chicks and bunnies)

Snickers

Skittles

M&Ms Milk Chocolate and Peanut

Hershey's Miniatures (except for the Crispy ones)

Hershey's Kisses

Jelly Belly Jelly Beans (all except for the cinnamon toast flavor)

Cadbury Creme and Caramel Eggs

Reese's Easter Eggs

Sixlets

Starbursts

There are some non-edible things that she might like in there as well, like:

Coloring books

Crayons

Activity books

Some cute hair barrettes

A little stuffed bunny

A Get Out of Chore Free Card

A trendy decorated notebook

Some colorful ink pens or markers

Quarters (Sometimes my grandparents put those in eggs instead of candy)

Hopefully, you will enjoy Easter as much as she will!

Sincerely,

NoGluGirl

[Christine E]

no glu girl,

thanks for the lists! I always like to see new things, like the Dora the Explorer cereal. Is the Cascade powder gluten free? I was told to stay away from powders as gluten is often used as an anti-caking agent. Also, Trix cereal appears to be gluten free from the ingredients. General Mills did not give a direct answer on Trix, but replied that any allergens, wheat, oats, barley or rye, would be listed. Do you know if Trix is actually gluten free?

mom22kids,

don't be discouraged if you don't see a sudden change. As always, all kids/people are different. It took my son five weeks to show improvement-he finally slept more than three hours at 15 months!