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 All This And Needing Help


KK555

Recommended Posts

KK555 Newbie

Hey everyone,

We have just put our 2 year old on a gluten diet. He has had issues since he was a baby. He had to have soy formula and has been on soy milk since he was one. He gets skin rashes and has malabsorption problems (and boy do his poops stink). Due to lack of funds we are not able to have a biopsy done (which his GI wanted) so we have put him on a gluten free diet to see if his symptoms improve. However, it sure is not easy grocery shopping. I can read the labels for wheat, rye, barley and gluten but I am so afraid I will miss something that is mixed together in those crazy ingredient names. How do I know what has what without calling someone 24hrs a day. I know there are gluten free products out there but they tend to be expensive and we are a family on a budget. Anyone have any key things to look out for? Or safe products to buy? I read we need to stay away from Canola oil, vinegar, modified food starch. Seems these things are in all the "normal" food. What about butter, mayo, mustard, ice cream and such? Any help I could get would be great. Thanks!!


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



Celiac.com Sponsor (A8-M):



Korwyn Explorer
Hey everyone,

We have just put our 2 year old on a gluten diet. He has had issues since he was a baby. He had to have soy formula and has been on soy milk since he was one. He gets skin rashes and has malabsorption problems (and boy do his poops stink). Due to lack of funds we are not able to have a biopsy done (which his GI wanted) so we have put him on a gluten free diet to see if his symptoms improve. However, it sure is not easy grocery shopping. I can read the labels for wheat, rye, barley and gluten but I am so afraid I will miss something that is mixed together in those crazy ingredient names. How do I know what has what without calling someone 24hrs a day. I know there are gluten free products out there but they tend to be expensive and we are a family on a budget. Anyone have any key things to look out for? Or safe products to buy? I read we need to stay away from Canola oil, vinegar, modified food starch. Seems these things are in all the "normal" food. What about butter, mayo, mustard, ice cream and such? Any help I could get would be great. Thanks!!

Hi KK,

You didn't list what country you live in, so you might want to mention that since that will affect certain answers you get. Distilled vinegar is ok. That is the first I've heard about Canola oil though. Modified food starch can be questionable. Ice cream, and mustard are also questionable. There are several safe food and ingredient lists, but this one might be especially helpful for you: Open Original Shared Link.There are several very informative pages there, including safe and unsafe ingredient lists. One thing that they mention though is Oats. While oats are still somewhat debated, if you can find certified gluten free oats produced from a dedicated grower, they should be ok. I'm super-sensitive, and I have been ok with them. Also try to avoid anything with cottonseed oil (my personal recommendation) since no part of the cotton plant is human edible, and cottonseed oil is so highly refined in order to make it non-poisonous that it can be quite upsetting for some people.

We too are on a budget, but we've had to adjust things accordingly and make some cutbacks in other areas since I was diagnosed back in April. It hasn't been fun or easy, especially since I'm allergic to soy and dairy intolerant as well. But it has been worth it since our medical bills are starting to decrease as my health improves, and I'm feeling and doing better in some areas than I have in years.

You may need/want to consider switching out his soy for some other types of milk (goat, almond, cashew, rice) since you can develop additional intolerances to foods if that is all you are eating, especially if your system is already unhappy.

psawyer Proficient

Canola oil is gluten-free, as is butter. Here is some more information that will help with label reading in mainstream foods:

Unsafe ingredients: https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html

Safe ingredients: https://www.celiac.com/articles/181/1/Safe-...ents/Page1.html

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link This makes shopping MUCH easier.

FDA foods are required to list wheat - it cannot be hidden.

Rule #1: Never eat anything without reading the label first.

Rule #2: Consistently check labels, even of your favorite products, as product formulations can change.

Rule #3: If you are unsure of an ingredient, or the company's policy on labeling, call the phone number on the back of the product or email the company.

Hope this helps.

LDJofDenver Apprentice

There are also gluten free grocery shopping guides out there to make your life WAY easier at the store. I'm talking about your regular grocery store, and mainstream grocery lines (Heinz, Hormel, Progresso, on and on).

Gluten-Free Grocery Shopping Guides

Open Original Shared Link

Open Original Shared Link

There another out that can also be downloaded to your PDA device, etc., by Clan Thompson.

I bought the Cecilas guide, it was about $25 and worth every dollar. Put an end to standing in the aisle and reading packages!

KK555 Newbie
Hi KK,

You didn't list what country you live in, so you might want to mention that since that will affect certain answers you get. Distilled vinegar is ok. That is the first I've heard about Canola oil though. Modified food starch can be questionable. Ice cream, and mustard are also questionable. There are several safe food and ingredient lists, but this one might be especially helpful for you: Open Original Shared Link.There are several very informative pages there, including safe and unsafe ingredient lists. One thing that they mention though is Oats. While oats are still somewhat debated, if you can find certified gluten free oats produced from a dedicated grower, they should be ok. I'm super-sensitive, and I have been ok with them. Also try to avoid anything with cottonseed oil (my personal recommendation) since no part of the cotton plant is human edible, and cottonseed oil is so highly refined in order to make it non-poisonous that it can be quite upsetting for some people.

We too are on a budget, but we've had to adjust things accordingly and make some cutbacks in other areas since I was diagnosed back in April. It hasn't been fun or easy, especially since I'm allergic to soy and dairy intolerant as well. But it has been worth it since our medical bills are starting to decrease as my health improves, and I'm feeling and doing better in some areas than I have in years.

You may need/want to consider switching out his soy for some other types of milk (goat, almond, cashew, rice) since you can develop additional intolerances to foods if that is all you are eating, especially if your system is already unhappy.

Thanks for the info. I live in the US, Texas. I was talking to someone today that was telling me I need to buy separate dishes (pots, pans, bowls, plates ect) because plastic can absorb the gluten. Is this true, is it really that important?? Thanks for the website. I am ready to start the ongoing process of gluten free. Just hope I can keep him away from other kids snacks. He stole another kids goldfish snacks today and he ate them before the teacher could get to him. He is having some trouble adjusting.

KK555 Newbie
Canola oil is gluten-free, as is butter. Here is some more information that will help with label reading in mainstream foods:

Thanks tons!!!! :D

KK555 Newbie
There are also gluten free grocery shopping guides out there to make your life WAY easier at the store. I'm talking about your regular grocery store, and mainstream grocery lines (Heinz, Hormel, Progresso, on and on).

Gluten-Free Grocery Shopping Guides

Open Original Shared Link

Open Original Shared Link

There another out that can also be downloaded to your PDA device, etc., by Clan Thompson.

I bought the Cecilas guide, it was about $25 and worth every dollar. Put an end to standing in the aisle and reading packages!

Thanks, reading labels can be a chore, and in the grocery store is the worst. I will look into the Celiacs guide.


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

I'm not aware of gluten being absorbed by plastic but the rest of the advice is good. If you have glass or stainless steel cookware, a really good scrubbing should do the trick. But any nonstick cookware that is well scratched, should probably not be used for his food. It just might be easier to designate a pan or two for his food use only. He needs his own toaster, you just cannot clean those well enough. If you use a colander for pasta, he should probably have a newone just for him.

You don't have to spend a fortune on alternate foods for him. You can buy gluten-free pasta for him at Walmart and it isn't very expensive. For bread, I just substitute corn tortillas, I imagine those are cheap in TX just like they are here in IN. Other than that, his special milk and regular meats and cheeses, fruits and vegetables. What else does he need besides that? If he needs other treats, they're really much cheaper cooked at home. Taste better too. The plain peanut butter cookies that it seems most people know about here are the best. Don't require any flour. This weekend I tried a brownie recipe with no flour. Pretty good. If you ask, I'll bring the recipes from home and post them for you.

Korwyn Explorer
Thanks for the info. I live in the US, Texas. I was talking to someone today that was telling me I need to buy separate dishes (pots, pans, bowls, plates ect) because plastic can absorb the gluten. Is this true, is it really that important?? Thanks for the website. I am ready to start the ongoing process of gluten free. Just hope I can keep him away from other kids snacks. He stole another kids goldfish snacks today and he ate them before the teacher could get to him. He is having some trouble adjusting.

Yes and no. It is not that the gluten is absorbed by the plastic, but that it is trapped in the (invisible) scratches and pits. This is why you are recommended to either replace or get a second set, also of any non-stick pans, skillets, pots, cookie sheets, baking stones, and nylon, plastic, or wood cooking utensils.

CC (Cross-contaminiation) is a real problem. The US FDA 'safe limit' is 20 ppm, which for all practical purposes means nothing. Many people with celiac disease or GI react to amounts less than 10 mg of gluten. To give you a mental picture, take a small paperclip and straighten it out. That masses ~ 1 gram (1000 mg). Cut it up into 100 pieces. Each piece would amount to 10 mg. A standard sized piece (wonderbread style) of wheat bread contains ~48 grams (4800 mg) of gluten. So even a single invisible crumb can become an issue.

If you bake (especially using made from scratch recipes) in the same kitchen it can be very difficult to maintain a gluten-free area because the flour dust will settle on everything, no matter how hard you try.

One of the best things you can do is get your Dr. involved or find a GI/celiac disease aware doctor and get a letter prescribing or requiring a strict gluten free diet. At that point you will have some medical leverage issues with the school which will require them to adhere more strictly to your child's dietary needs.

Not all corn-tortillas are gluten free. Many places that produce corn tortillas share the same line as their wheat containing products, so it is best to research. Mission foods produces a white corn tortilla that is supposed to be gluten-free. Also 'Food for Life' makes a rice based tortilla I think.

mommysarah713 Rookie

I recently read somewhere that Chicago is having some kind of free Celiac Disease screening. I wish i had more info for you, but try googling it.

KK555 Newbie
Yes and no. It is not that the gluten is absorbed by the plastic, but that it is trapped in the (invisible) scratches and pits. This is why you are recommended to either replace or get a second set, also of any non-stick pans, skillets, pots, cookie sheets, baking stones, and nylon, plastic, or wood cooking utensils.

CC (Cross-contaminiation) is a real problem. The US FDA 'safe limit' is 20 ppm, which for all practical purposes means nothing. Many people with celiac disease or GI react to amounts less than 10 mg of gluten. To give you a mental picture, take a small paperclip and straighten it out. That masses ~ 1 gram (1000 mg). Cut it up into 100 pieces. Each piece would amount to 10 mg. A standard sized piece (wonderbread style) of wheat bread contains ~48 grams (4800 mg) of gluten. So even a single invisible crumb can become an issue.

If you bake (especially using made from scratch recipes) in the same kitchen it can be very difficult to maintain a gluten-free area because the flour dust will settle on everything, no matter how hard you try.

One of the best things you can do is get your Dr. involved or find a GI/celiac disease aware doctor and get a letter prescribing or requiring a strict gluten free diet. At that point you will have some medical leverage issues with the school which will require them to adhere more strictly to your child's dietary needs.

Not all corn-tortillas are gluten free. Many places that produce corn tortillas share the same line as their wheat containing products, so it is best to research. Mission foods produces a white corn tortilla that is supposed to be gluten-free. Also 'Food for Life' makes a rice based tortilla I think.

Thanks. I bought him his own set of dishes and we have labeled all of his things in red. I am hoping that helps to remind us until we sink into a habit.

KK555 Newbie
I'm not aware of gluten being absorbed by plastic but the rest of the advice is good. If you have glass or stainless steel cookware, a really good scrubbing should do the trick. But any nonstick cookware that is well scratched, should probably not be used for his food. It just might be easier to designate a pan or two for his food use only. He needs his own toaster, you just cannot clean those well enough. If you use a colander for pasta, he should probably have a newone just for him.

You don't have to spend a fortune on alternate foods for him. You can buy gluten-free pasta for him at Walmart and it isn't very expensive. For bread, I just substitute corn tortillas, I imagine those are cheap in TX just like they are here in IN. Other than that, his special milk and regular meats and cheeses, fruits and vegetables. What else does he need besides that? If he needs other treats, they're really much cheaper cooked at home. Taste better too. The plain peanut butter cookies that it seems most people know about here are the best. Don't require any flour. This weekend I tried a brownie recipe with no flour. Pretty good. If you ask, I'll bring the recipes from home and post them for you.

I would love the reciepes. Our dinner and snack selection has not been very tasty as we are trying to work this all out. Thanks for all the help.

ang1e0251 Contributor

I am very sorry I did not reply to you. Your response ended up in my Trash instead of my Inbox. I didn't realize that till today. I will get the recipes for you.

Mtndog Collaborator

I just wanted to say welcome. This board is a great resource. You may also find Open Original Shared Link website helpful as well. It was designed for parents of children with autism but they have an active community that keeps an updated shopping and products guide.

I actually did get new plastic storage containers because they were fairly scratched up and stained (from holding pasta and tomato sauce!) but it really is individual. Some people react to very small amounts, others don't.

I chose Red as my gluten-free color too as in "Stop! Bev's container (spatula, bowl etc).

ang1e0251 Contributor

Finally! I have those recipes for you.

Flourless Brownies

1 15 oz. can of no salt added black beans, drained and rinsed.

3 large eggs

1/3 cup melted butter

1/4 cup cocoa powder

1/8 teaspoon salt

2 teaspoons vanilla extract

1/2 cup plus 2 tablespoons cane sugar

1/2 cup semi sweet chocolate chips

1/3 cup chopped walnuts

Butter an 8 inch baking pan. Place the black beans, eggs, melted butter, cocoa powder, salt, vanilla, and sugar in the bowl of a food processor and blend until smooth. Remove the blade and carefully stir in the chocolate chips and walnuts. Transfer mixture to the prepared pan, Bake the brownies for 3- to 35 minutes at 350 degrees or just until set in the center. Cool before cutting.

Honest to God, the BEST Peanut Butter Cookies, I Swear!

2 cups peanut butter

2 cups sugar

2 large eggs

2 teaspoons baking soda

a pinch of salt

1 teaspoon vanilla

Beat the peanut butter and sugar until fluffy. Add eggs, then soda, salt and vanilla. Drop dough into 1 inch balls onto greased cookie sheets. Sprinkle with sugar. Bake 8-10 minutes at 350 degrees till golden brown and puffy. Cool then eat!!

  • 5 weeks later...
KK555 Newbie

Wow, so sorry- I did not know you replied with the recieps. Thanks a bunch, I cant wait to try them.

Finally! I have those recipes for you.

Flourless Brownies

1 15 oz. can of no salt added black beans, drained and rinsed.

3 large eggs

1/3 cup melted butter

1/4 cup cocoa powder

1/8 teaspoon salt

2 teaspoons vanilla extract

1/2 cup plus 2 tablespoons cane sugar

1/2 cup semi sweet chocolate chips

1/3 cup chopped walnuts

Butter an 8 inch baking pan. Place the black beans, eggs, melted butter, cocoa powder, salt, vanilla, and sugar in the bowl of a food processor and blend until smooth. Remove the blade and carefully stir in the chocolate chips and walnuts. Transfer mixture to the prepared pan, Bake the brownies for 3- to 35 minutes at 350 degrees or just until set in the center. Cool before cutting.

Honest to God, the BEST Peanut Butter Cookies, I Swear!

2 cups peanut butter

2 cups sugar

2 large eggs

2 teaspoons baking soda

a pinch of salt

1 teaspoon vanilla

Beat the peanut butter and sugar until fluffy. Add eggs, then soda, salt and vanilla. Drop dough into 1 inch balls onto greased cookie sheets. Sprinkle with sugar. Bake 8-10 minutes at 350 degrees till golden brown and puffy. Cool then eat!!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.