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

Label Reading For Newly Diagnosed Child


Grace'smom

Recommended Posts

Grace'smom Explorer

Hi everyone

Where I'm only about 5-6 wks into the gluten free diet for my 6 yr old, I still have a lot of questions regarding what's okay to eat. Children's Hospital gave us a great handbook for label reading. The one question I am stuck on, however, is that if a product does not contain gluten on the label, are you automatically ok to give it a green light? So many salty snacks, ice cream treats and candy do not have food starch: wheat on the label...same with salad dressings. If I don't see it listed, I've been allowing her to have it. But I'm thinking that many of these products are probably produced in factories that do produce gluten-containing foods.

Let's say that I call each of these food manufacturers and learn that most also produce gluten containing foods at their plants. Do I then pull all of these foods from her diet? At that point, it would no longer make sense to think that simple label reading is enough to form a decision on. This came to mind yesterday when, at a friend's pool party, she asked if she could eat the candy Swedish Fish. I assumed, incorrectly, that it was the same product as licorice and said no. Then I read the label. It does not contain any wheat, it's primarily a corn-syrup product. So I let her have some. But I also have no idea what other products are created alongside Swedish Fish, and if its truly ok to eat these. And a lot of the time, that is the sudden situation we'll find ourselves in...at a relative's home for dinner, for example. I'll read the label, and upon finding it does not contain gluten, will let her have some. I just have this uneasiness in not knowing if that label reading is enough, or do I also have to call and check in each and every case if there is a chance for cross-contamination. Do you all rely on label reading alone as the standard? Please advise. Thank you, Emily


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

I, personally, go with the label. It's more than just wheat, do be sue you're looking for all the right words.

I limit the 'manufactured in a facility that also....', and I really really avoid 'made on the same lines as...'.Do your best, and you'll figure out what guidelines are appropriate for your family as you go along.

Grace'smom Explorer

I, personally, go with the label. It's more than just wheat, do be sue you're looking for all the right words.

I limit the 'manufactured in a facility that also....', and I really really avoid 'made on the same lines as...'.Do your best, and you'll figure out what guidelines are appropriate for your family as you go along.

Thank you...yes, I am aware of the other buzz words; just using the food starch - wheat as an example. Most of the foods she's eating aren't derivatives of oats, rye or barley (Save for the malt extract in Rice Krispies, etc. She sure misses those.) Thanks for the input.

psawyer Proficient

Do you have any gluten-containing products in your home? If so, your home is a shared facility and your dishes and cutlery are shared equipment. But you wash them between uses, don't you?

That's kind of how I look at products from companies that are not gluten-free special facilities. I eat things made by Kraft which do not contain gluten, even though I know Kraft makes products with gluten in them. Kraft is just one example of a company with a clear gluten disclosure policy.

Tina B Apprentice

Thank you...yes, I am aware of the other buzz words; just using the food starch - wheat as an example. Most of the foods she's eating aren't derivatives of oats, rye or barley (Save for the malt extract in Rice Krispies, etc. She sure misses those.) Thanks for the input.

Erewhon crispy brown rice cereal. gluten-free and tastes just like rice crispies. Also comes with berries, plain, lightly sweetened and chocolate like cocoa crispies. I've gotten it in regular supermarkets all over. Look in the organic and health aisle if there isn't a seperate gluten free aisle.

Open Original Shared Link free.com/index.cfm/manufacturer/Erewhon/958043-___-Crispy-Brown-Rice-Cereal-with-Berries.html

Open Original Shared Link

Skylark Collaborator

There are different levels of gluten sensitivity among people with celiac disease. Looking for gluten ingredients on labels is fine for most celiacs. If your daughter starts having unexplained reactions to processed foods or her antibodies don't go down, that's when you have to be more cautious about cross-contamination on manufacturing lines and in kitchens or restaurants.

Tina B Apprentice

There are different levels of gluten sensitivity among people with celiac disease. Looking for gluten ingredients on labels is fine for most celiacs. If your daughter starts having unexplained reactions to processed foods or her antibodies don't go down, that's when you have to be more cautious about cross-contamination on manufacturing lines and in kitchens or restaurants.

I also do the individual ingredients on the label and it works fine for me. There are some things that are gluten free that are not specifically labeled that way but contain no ingredients that are not OK. Back when I was diagnosed some labels didn't tell you from what source :modified food starch was." In more recent years I see where they put after the word "modified food starch " (from corn or from wheat so you know the source).


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



Celiac.com Sponsor (A8-M):



Grace'smom Explorer

Wow... I feel SO much better after reading your posts! I was so afraid that I was missing a step here. So many new things to learn with this diet. So appreciative of all of the suggestions and input. Thank you, thank you!

Tina B Apprentice

Wow... I feel SO much better after reading your posts! I was so afraid that I was missing a step here. So many new things to learn with this diet. So appreciative of all of the suggestions and input. Thank you, thank you!

Once you get familiar with what to look for you don't necessarily need the label "gluten free". when my boys were young they would read the labels on their haloween candy when they got home and make a little pile for MOM. Too cute :-)

T.H. Community Regular

I'll be honest, I never just go with the label. I don't think it's safe, especially after reading a couple studies. A Dr. Murray at Mayo Clinic said the following, after a study of celiac disease and symptoms: we were surprised to discover no correlation between extent of intestine damage and patient symptoms.

Which means, best I can tell, that a slight outward reaction could actually go along with more severe physical harm. I tend to err on the side of caution due to that.

Some other information that I've come across over the last year while trying to figure this all out:

1) cross contamination is really easy - we learned that the hard way with corn tortillas - they are often processed in the same room with flour tortillas. The wheat flour gets on all the equipment in the room, including the ones that make corn tortillas.

2) I had thought that I could at least look at the 'risk' of this happening by the 'made in a facility that also produces wheat products' kind of label, yeah? However, that label has no legal basis. NO company is required to put anything like that on any product; it's all voluntary. So any product can be made on the same equipment, in the same room, etc... with no warning notice whatsoever. Also, while the newest allergen law has made some changes on what has to be reported for the 8 major allergens (which is wheat, so they do have more strictures on reporting a product 'may' contain wheat), this does not apply to anything that is not one of the 8 major allergens, like barley or rye. Also, this labeling is a US law, so other country's labeling laws may require even less.

3) If you haven't been able to yet, it's probably worth your while to look up all the non-food gluten sources, too. Like tea bags, which can be sealed with gluten, or some tempera type paints and glue pastes. These have gotten us a few times, too. :-(

I wish you luck - it's always hard in the beginning, I think, but it gets easier!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,860
    • Most Online (within 30 mins)
      7,748

    Rena Celiac
    Newest Member
    Rena Celiac
    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

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.