Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Views on the clarity of the labelling for 'free-from' or 'gluten free' products for people with coeliac disease


katievovnik

Recommended Posts

katievovnik Newbie

I am curious to know whether anyone else struggles with the clarity of labelling for gluten-free products, especially for someone with coeliac disease. 

I have recently found out that 'free-from' doesn't necessarily mean the product is free from gluten cross-contaminants and therefore, may still be unsafe for someone with the auto-immune disease.

I would love to know if anyone else has struggled with this and any other opinions or advice!


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



Celiac.com Sponsor (A8-M):



trents Grand Master

"Free from" is not one I have seen but judging from your spelling of "coeliac" it must be a UK thing.

cristiana Veteran

Hi Katie

Welcome to the forum!

The following may be helpful if you are posting from the UK where I live (I notice your spelling of "coeliac", my American friends here drop the "o" which to me makes much more sense!)

If you are based in the UK, have you tried joining Coeliac UK?  They  produce a Food and Drink Guide which lists safe products that are suitable for coeliacs.  I find this very helpful.   They also have an app you can take shopping with you which I am told is very good.

As I understand it, Coeliac UK checks that the food and drink which appears in this directory is safe for coeliacs to consume.  To qualify products must contain less than 20 parts per millon (20 ppm) of gluten.  This is deemed safe for most people with coeliac disease as in a day if you total what you eat from this list, it should still be under the accepted 10 mg daily limit, a level deemed safe for coeliac consumption.  But is thought that some coeliacs are super-sensitive and this may be too much for them.

Natascha's Law which is being introduced this month should put far more importance on correct labeling - I'm hoping for great things.

But of course ... this isn't much help if you aren't posting from the UK! Apologies if you are not.

Cristiana

 

 

 

 

cristiana Veteran
(edited)
12 minutes ago, trents said:

"Free from" is not one I have seen but judging from your spelling of "coeliac" it must be a UK thing.

Hi Trents!  Yes, Free From is used a lot in our main supermarket chains.  Usually one finds the gluten free products there but one has to be a bit wary and read the labeling.  I found some organic Dove flour (a brand which also makes excellent gluten free flour) in the Free From area in Sainsbury's.   To this day I'm not sure if it is Sainsbury's policy to put organic flour with the gluten free - I think it was an error - but I took it upon myself to move it to where the other organic products were.   Last time I checked the organic flour was still where it should be!  

Dairy Free products are also sold from this area in big supermarkets, as well as nut free, I think.  Often supermarkets try to create things like cakes, cereals, cookies etc that are dairy free, nut free, gluten free - kill several birds with one stone, as it were.

Edited by cristiana
trents Grand Master
(edited)
35 minutes ago, cristiana said:

As I understand it, Coeliac UK checks that the food and drink which appears in this directory is safe for coeliacs to consume.  To qualify products must contain less than 20 parts per millon (20 ppm) of gluten.  This is deemed safe for most people with coeliac disease as in a day if you total what you eat from this list, it should still be under the accepted 10 mg daily limit, a level deemed safe for coeliac consumption.

Cristiana, I'm not sure what you are trying to say here. You seem to be contradicting yourself by saying in one place that 20ppm is deemed safe but then immediately lower it to 10ppm in order to be safe. Could you clarify your intent here?

Edited by trents
cristiana Veteran

Thanks Trents.

Sorry for any confusion. I wrote 10 mg, not 10 ppm, but that is probably a rather confusing way of putting it.  I've found this which might be a bit clearer.

"Consuming a diet at 20 parts per million (ppm) is considered safe for those with celiac disease because it should put most people below the 10 mg threshold when you add up all the foods eaten in a day."

https://nationalceliac.org/celiac-disease-questions/understanding-gluten-levels/

trents Grand Master

That does help me understand what you were trying to say, cristiana. The article in the link (and reflected in your post) is distinguishing between concentration of gluten in food item and total gluten consumption over a day's time. That is a concept I don't think I have ever seen discussed anywhere else and certainly not on this forum. I think it is an important distinction but I'm not sure I agree entirely with the conclusion. The reason I say that is because it implies you can have two totally gluten free meals on a given day and then consume one that significantly exceeds 20 ppm and not have (for most celiacs) a reaction as long as the total amount of gluten in that meal did not exceed 50mg. I'm not sure that would bear out in the actual experience of most celiacs. But I could be wrong. The article in the link sites a study but I think more research probably needs to be done in this area. At this point, I tend to think you must pay attention to both the concentration and the total amount.


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



Celiac.com Sponsor (A8-M):



RMJ Mentor
6 hours ago, trents said:

That does help me understand what you were trying to say, cristiana. The article in the link (and reflected in your post) is distinguishing between concentration of gluten in food item and total gluten consumption over a day's time. That is a concept I don't think I have ever seen discussed anywhere else and certainly not on this forum. I think it is an important distinction but I'm not sure I agree entirely with the conclusion. The reason I say that is because it implies you can have two totally gluten free meals on a given day and then consume one that significantly exceeds 20 ppm and not have (for most celiacs) a reaction as long as the total amount of gluten in that meal did not exceed 50mg. I'm not sure that would bear out in the actual experience of most celiacs. But I could be wrong. The article in the link sites a study but I think more research probably needs to be done in this area. At this point, I tend to think you must pay attention to both the concentration and the total amount.

In all papers I’ve seen where researchers study how much gluten someone with celiac disease can ingest they feed absolute amounts, mg or g, not ppm.  To get to recommendations an assumption is made of how many kg of food a person eats in a day and a calculation performed to convert acceptable total mg to ppm based on that many kg of food. When FDA came up with 20 ppm they also considered the level that analytical tests available at the time could detect.

katievovnik Newbie
23 hours ago, trents said:

"Free from" is not one I have seen but judging from your spelling of "coeliac" it must be a UK thing.

Yes this is a UK thing! Free-from refers to products which don't contain certain allergens such as dairy or gluten.

  • 3 months later...
LJ-Azura Rookie
On 10/6/2021 at 1:16 AM, katievovnik said:

I am curious to know whether anyone else struggles with the clarity of labelling for gluten-free products, especially for someone with coeliac disease. 

I have recently found out that 'free-from' doesn't necessarily mean the product is free from gluten cross-contaminants and therefore, may still be unsafe for someone with the auto-immune disease.

I would love to know if anyone else has struggled with this and any other opinions or advice!

In Australia we have "Free From.." as a category also. They seem to use this for many allergies etc. For example "Free From Gluten", "Free From Nuts", "Free From Sugar" etc etc.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,970
    • Most Online (within 30 mins)
      7,748

    Eliartstar
    Newest Member
    Eliartstar
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cameo674
      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
    • Scott Adams
      I don't believe that site is updated regularly, and it may be unreliable.  You can search this site for 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/   
    • KimMS
      Hello! I did a brief search on this and couldn't find recent posts, but feel free to direct me to something if I missed it! I have had a difficult time confirming which thyroid medications (specifically generic forms of Levothyroxine) are gluten-free and safe for celiacs. I am pretty confident the generic manufacturer Mylan is safe, and I have been taking this for almost two years. Recently (I think b/c of a recall), Mylan has not been available at my local pharmacies. The list I typically use for gluten-free drugs (http://glutenfreedrugs.com/newlist.htm) does not list any of the other manufacturers offered by pharmacies in my area (Accord and Macleod). When I do a search, sites tend to say these brands are gluten-free but I can't fully confirm, and other sites say that only Lannett and Mylan generic brands are safely gluten free. I have called manufacturers and they say "there are no gluten ingredients" but they don't have information regarding manufacturing/cross contact. In particlar, Accord said there is gluten present in the manufacturing facilities so they can't guarantee no cross contact. What recommendations do you have for finding levothyroxine that I can mostly be assured is safe for celiacs? It is tricky b/c I found one I was confident in but now I can't seem to get that manufacturer at any pharmacy near me. I don't want to be unnecessarily overly concerned about this, but since it is a medicine I take daily, I want to be pretty certain it is safe (I have both celiac and gluten ataxia so I need to be very careful with any gluten intake and cross contact.)      
×
×
  • Create New...