Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New To Celiac


ckmom

Recommended Posts

ckmom Rookie

I have a 6 year old daughter who just got diagnosed officially today that she has celiac. Her father & I are happy for a dx. but are overwhelmed. We understand what to do, but are still just floored ( I don't know how else to describe the feeling). She also has an allergy to peanuts/tree nuts, so alot of the prepared foods are cross-contaminated for us and that is very frustrating. We are very positive about this to her and even to ourselves but at times it is very sad to think about birthday parties and the future events.

This is my first chat so thanks for listening and any positive advice would be greatly appreciated! :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



2Boys4Me Enthusiast

Welcome to the board. :)

I have a 7 year old son who has celiac and as far as birthdays go, he usually packs his own pizza and cupcake. Almost all the parties seem to have pizza, so we call ahead to the parents or the venue to make sure there is somewhere for him to heat it up. No problems so far, and it's been a year and a half.

Kibbie Contributor
I have a 6 year old daughter who just got diagnosed officially today that she has celiac. Her father & I are happy for a dx. but are overwhelmed. We understand what to do, but are still just floored ( I don't know how else to describe the feeling). She also has an allergy to peanuts/tree nuts, so alot of the prepared foods are cross-contaminated for us and that is very frustrating. We are very positive about this to her and even to ourselves but at times it is very sad to think about birthday parties and the future events.

This is my first chat so thanks for listening and any positive advice would be greatly appreciated! :)

Oh boy do I remember how you feel! It was an up and down roller coaster for a few months for me. One minute I was glad we knew what was going on with my daughter and happy that all we had to do was change her diet, the next minute I was sad because of all the things she would be "missing" I can tell you know I've noticed a lot of positives:

1. My daughter actually likes healthy foods and will go to the fruits and veggies before junk food (compared to other kids her age)

2. I have only found 1 thing that I can't substitute for gluten free so far... and thats phyllo dough (sp?)

3. I can make gluten free treats and meals that taste as good (but I think better) than the full of gluten counterpart!

4. My daughter is so much better now (that should be the #1 reason)

5. My daughter may eat different things from other people but its just part of what makes her a unique person and I'm beginning to like the idea that she will be reading labels for things that are "bad" for her for the rest of her life! I WISH I learned how to do that earlier... maybe then I wouldn't have had to loose 50 lbs 6 years ago :)

My daughter is younger but we just celebrated her 2nd birthday party and it was completely gluten free. Not a single person knew and a few even asked for my recipe for her Birthday Cake :)

We have also successfully gone to a few other birthday parties and I just bake cupcakes ahead of time and bring one along so she can eat cake too :)

I can tell you that with in a few weeks you will have the hang (for the most part) of this and be starting to give advice to others on this website!

Hope those positives help!

ckmom Rookie

Thank You so much for responding! It really feels good to know that others felt the same way at first. The roller coaster is definately the best way to describe this feeling right now. I cannot wait to feel all of those positives that you wrote - it helps to talk about it. Thank You!

Oh boy do I remember how you feel! It was an up and down roller coaster for a few months for me. One minute I was glad we knew what was going on with my daughter and happy that all we had to do was change her diet, the next minute I was sad because of all the things she would be "missing" I can tell you know I've noticed a lot of positives:

1. My daughter actually likes healthy foods and will go to the fruits and veggies before junk food (compared to other kids her age)

2. I have only found 1 thing that I can't substitute for gluten free so far... and thats phyllo dough (sp?)

3. I can make gluten free treats and meals that taste as good (but I think better) than the full of gluten counterpart!

4. My daughter is so much better now (that should be the #1 reason)

5. My daughter may eat different things from other people but its just part of what makes her a unique person and I'm beginning to like the idea that she will be reading labels for things that are "bad" for her for the rest of her life! I WISH I learned how to do that earlier... maybe then I wouldn't have had to loose 50 lbs 6 years ago :)

My daughter is younger but we just celebrated her 2nd birthday party and it was completely gluten free. Not a single person knew and a few even asked for my recipe for her Birthday Cake :)

We have also successfully gone to a few other birthday parties and I just bake cupcakes ahead of time and bring one along so she can eat cake too :)

I can tell you that with in a few weeks you will have the hang (for the most part) of this and be starting to give advice to others on this website!

Hope those positives help!

NoGluGirl Contributor
I have a 6 year old daughter who just got diagnosed officially today that she has celiac. Her father & I are happy for a dx. but are overwhelmed. We understand what to do, but are still just floored ( I don't know how else to describe the feeling). She also has an allergy to peanuts/tree nuts, so alot of the prepared foods are cross-contaminated for us and that is very frustrating. We are very positive about this to her and even to ourselves but at times it is very sad to think about birthday parties and the future events.

This is my first chat so thanks for listening and any positive advice would be greatly appreciated! :)

Dear ckmom,

You may want to try the diet or your hubby considering one of you (or even both of you) may have it. This is genetic, after all! So, I decided to give you a list of some stuff that is readily available. I know some of this stuff your daughter cannot have, but maybe you guys could if neither of you are allergic to nuts. Also, a great place to get your daughter some safe candy is at www.choclat.com where they have great nut-free, gluten-free, casein-free candies and cake mixes. They are also more affordable than many other places.

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

Nic Collaborator

Just want to add in that I can also relate to the roller coaster ride. My son went gluten free 2 years ago at the age of 4. It was very hard at first but he really did develop new favorites very quickly. For breakfast he now loves the Vann's waffles. We have them in Apple Cinnamon, Blueberry, and original. I just checked them for nuts and it doesn't seem to be a problem. He also loves Kinnickinicks blueberry muffins. And for lunch ideas check out Ian's Natural Foods. They make chicken nuggets, fish sticks, corndog nuggets, and fries. They are labeled as Allergen Free so I would have to assume that includes nuts. As far as the rollercoaster is concerned, we have hopped back on as we are now investigating the possibility of a dairy intolerance. As much as I want this to be it so he can finally be healthy, I am almost praying it is not because many of his new favorites contain dairy. It is a double edged sword, but if it makes them better it is worth it. Good Luck!

Nicole

Heidilane Newbie

I too am a new mom to Celiac - my son was just diagnosed last week only days before his third birthday. I have discovered that eating gluten free is a change, but it is not as difficult as I first thought. There are a lot of good products out there. I have a question about soy - some things I have read say that it is okay and some say it is not. Thank everyone for their posts and ideas; I have been looking through everything for about an hour and there are a lot of helpful ideas.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



taweavmo3 Enthusiast

Just wanted to say welcome, this is a great place to be. I could not have survived without the great people on this board.

I totally understand where you are coming from, and it will get easier with time. My kids are great eaters now, and half the time, my son's classmates want his gluten free treat instead of the cupcakes or whatever else they are eating. Most kids are very understanding, and quite smart when it comes to food restrictions. It's the adults you have to worry about, lol.

I also wanted to reassure you about future birthday parties, it's much easier than I thought. We just bring a cupcake, and sometimes some gluten-free pizza, or my kids just skip that part. I have noticed that at most parties, the kids could pretty much careless about the food anyway, it's always a chore to drag them away from playing to get them to eat! I just had birthday parties for my kids, and they went very smoothly. My 8 year old had a bowling party, we brought pizza for him, and ordered pizza for the rest of the kids. We had a gluten-free cake from a special bakery, and all the kids loved it. None of them noticed a thing.

For me, learning about Celiac has really been a huge blessing. We are all eating healthier, other family members are being diagnosed....and my kids are learning from an early age that it is okay to be different. It is really hard at first, no doubt about that.....but it can be a good thing. Take care!!!!!!

NoGluGirl Contributor

Dear ckmom,

I need to correct something from my list. Other members just told me there are cross contamination issues with the Hormel Beef Au Jus. Tostitos recently made me ill. Lay's are not made on dedicated lines except for the Stax. They are your safest bet. Some companies besides that having cross contamination issues include Bob's Red Mill, Amy's Kitchen, and Quaker.

Sincerely,

NoGluGirl

ckmom Rookie

I wanted to thank you so much for the info. My husband and I truly appreciate it. I feel that there are others who really understand. Thanks again. :rolleyes::D

Dear ckmom,

You may want to try the diet or your hubby considering one of you (or even both of you) may have it. This is genetic, after all! So, I decided to give you a list of some stuff that is readily available. I know some of this stuff your daughter cannot have, but maybe you guys could if neither of you are allergic to nuts. Also, a great place to get your daughter some safe candy is at www.choclat.com where they have great nut-free, gluten-free, casein-free candies and cake mixes. They are also more affordable than many other places.

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

Guest lorlyn

Just wanted to say hello and welcome. You will learn alot on this board. It is overwhelming at first and it does get easier the longer you do it but always read the labels carefully because they can change very often as I found out the hard way. Six months ago a candy my daughter likes did not contain wheat and she got some for Easter and she noticed on the label it contains wheat. I am pretty sure we checked the label months ago and it did not contain wheat then and now it does, just like trix cereal did contain wheat six months ago and now it does not. Just be careful and read everything. Good luck to you and daughter.

NoGluGirl Contributor
Just wanted to say hello and welcome. You will learn alot on this board. It is overwhelming at first and it does get easier the longer you do it but always read the labels carefully because they can change very often as I found out the hard way. Six months ago a candy my daughter likes did not contain wheat and she got some for Easter and she noticed on the label it contains wheat. I am pretty sure we checked the label months ago and it did not contain wheat then and now it does, just like trix cereal did contain wheat six months ago and now it does not. Just be careful and read everything. Good luck to you and daughter.

Dear lorlyn,

Trix is safe now? I heard something about it, but was not sure. That is so weird. They should put consumer warnings out on candies and stuff. I hate having to worry constantly about being poisoned from gluten!

Dear ckmom,

You are welcome! I want this to be as little stress as I can make it for others. We all know what it is like to feel overwhelmed and confused about this! Just remember to avoid the Hormel Beef Au Jus and Lay's unless they are the Stax. Tostitos ended up nearly killing me this past week. I am trying to warn others since they do not know!

Sincerely,

NoGluGirl

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      High DGP-A with normal IGA

    2. - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      High DGP-A with normal IGA

    3. - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      High DGP-A with normal IGA

    4. - trents replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Finding gluten free ingredients

    5. - knitty kitty replied to Colleen H's topic in Coping with Celiac Disease
      6

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748

    Tony White
    Newest Member
    Tony White
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
    • knitty kitty
      @Colleen H, I have had similar reactions and symptoms like yours.  I started following the low histamine Autoimmune Protocol diet developed by a doctor with Celiac Disease herself, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, is very helpful in understanding what's going on in the body.   Not only do you have antibodies attacking the body, there are mast cells spreading histamine which causes inflammation.  Foods also contain histamine or act as histamine releasers.  Our bodies have difficulty clearing histamine if there's too much.  Following the low histamine AIP diet allows your body time to clear the excess histamine we're making as part of the autoimmune response, without adding in extra histamine from foods.  High histamine foods include eggs, processed foods and some citrus fruits.  The AIP diet allows meat and vegetables.  No processed meats like sausage, luncheon meats, ham, chicken nuggets, etc. No night shades (potatoes, tomatoes, peppers, eggplant).  No dairy.  No grains.  No rice.  No eggs.  No gluten-free processed foods like gluten free breads and cookies.  No nuts.  No expensive processed gluten-free foods.  Meat and vegetables.  Some fruit. Some fruit, like applesauce, contains high levels of fructose which can cause digestive upsets.  Fructose gets fermented by yeasts in the gastrointestinal tract.  This fermentation can cause gas, bloating and abdominal pain.   The AIP diet changes your microbiome.  Change what you eat and that changes which bacteria live in your gut.  By cutting out carbohydrates from grains and starchy veggies like potatoes, SIBO bacteria get starved out.  Fermenting yeasts get starved out, too.  Healthy bacteria repopulate the gut.   Thiamine Vitamin B 1 helps regulate gut bacteria.  Low thiamine can lead to SIBO and yeast infestation.  Mast cells release histamine more easily when they are low in Thiamine.  Anxiety, depression, and irritability are early symptoms of thiamine insufficiency.  A form of thiamine called Benfotiamine has been shown to promote intestinal healing.   Thiamine works with the seven other B vitamins.  They all need each other to function properly.   Other vitamins and minerals are needed, too.  Vitamin D helps calm and regulate the immune system. Thiamine is needed to turn Vitamin D into an active form.  Thiamine needs magnesium to make life sustaining enzymes.  Taking a B Complex and additional Benfotiamine is beneficial.  The B vitamins are water soluble, easily lost if we're not absorbing nutrients properly as with Celiac Disease.  Since blood tests for B vitamins are notoriously inaccurate, taking a B Complex, Benfotiamine, and magnesium Threonate, and looking for health improvements is a better way to see if you're insufficient.   I do hope you will give the low histamine AIP diet a try.  It really works.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.