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

Mcflurries?


SpiralArrow

Recommended Posts

Finally-45 Contributor

More from me...

Getting on a strict regimen to completely eliminate corn (which is much, much, much harder than gluten because it's not regulated) made me feel the healthiest I've ever felt in my life. It's worth your effort if you have the same problem, even if you have to give away $50 worth of vitamins and eat really plain, "whole" food at restaurants.

I am not lactose intolerant (though I do primarily use Lactaid or rice milk because I was told to keep lactose under control), so if I need a dairy fix, I now go to the frozen yogurt or gelatto places that don't use corn syrup and are gluten and dextrin free. I tend to avoid the toppings since the gastro told me to be as paranoid as possible about cross contamination since really minute amounts of corn are setting off my anapyhlaxis. A little more expensive than McDonald's, but worth it. I think yogurt and kefir are low in lactose anyway? Costco's Kirkland brand ice cream is corn syrup and gluten free, I just don't like having a gallon of ice cream in the house! Otherwise, you'll find it hard to get corn/gluten-free ice cream in an avg. grocery store. Healthfood stores will work out. Just get your vanilla ice cream, a blender, and make your own flurries!

Besides corn syrup, you could also try watching your response to carmel color, corn vinegar, corn starch, and corn dextrin. It used to be mild responses for me, but one day in June, it was if all hell broke loose and I now can't tolerate any of them.


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



Celiac.com Sponsor (A8-M):



come dance with me Enthusiast

Not sure if this has been mentioned, but glucose syrup (wheat) does NOT contain the protein that is gluten, but if you have a wheat allergy as well as gluten intolerance, stay away from their ice creams. My friend's little one was taken to hospital because they assumed "gluten free" meant "wheat free" and they bought a sundae, only to find out that it does have glucose syrup in it, making it gluten free but not wheat free. She does not have coeliac disease, so able to have gluten in other forms, just no wheat of any kind.

  • 4 weeks later...
Bugman Newbie

Not sure if this has been mentioned, but glucose syrup (wheat) does NOT contain the protein that is gluten, but if you have a wheat allergy as well as gluten intolerance, stay away from their ice creams. My friend's little one was taken to hospital because they assumed "gluten free" meant "wheat free" and they bought a sundae, only to find out that it does have glucose syrup in it, making it gluten free but not wheat free. She does not have coeliac disease, so able to have gluten in other forms, just no wheat of any kind.

This is incorrect

Here in the uk 95% of all glucose is made from wheat, as is malodextrin. They are highly processed which means that technically no trace of gluten remains.

That technically part actually means that upto 20ppm of gluten can remain as does some wheat proteins

The same exists with distilled vodka. There should be no gluten that comes across in the distillation but proteins do, hence thoose whom are super sensitive to it cant have grain derived vodka

It was either CC or the glucose syrup, I am betting the latta

There is no requirement in the uk to specify what the glucose is derived from because of the high processing involved. I believe this is now the same in the USA and its only though companies being nice that they list it

Rubbish isn't it

Jim

come dance with me Enthusiast

This is incorrect

Here in the uk 95% of all glucose is made from wheat, as is malodextrin. They are highly processed which means that technically no trace of gluten remains.

That technically part actually means that upto 20ppm of gluten can remain as does some wheat proteins

The same exists with distilled vodka. There should be no gluten that comes across in the distillation but proteins do, hence thoose whom are super sensitive to it cant have grain derived vodka

It was either CC or the glucose syrup, I am betting the latta

There is no requirement in the uk to specify what the glucose is derived from because of the high processing involved. I believe this is now the same in the USA and its only though companies being nice that they list it

Rubbish isn't it

Jim

What I said is correct for Australian food standards.

GFceliacgirl Newbie

There are soooo many products with the gluten free label that aren't really gluten free. I get so mad at companies just trying to jump on the gluten free bandwagon to make a buck! Check out the unsafe ingredients list on celiac.com.

modiddly16 Enthusiast

Can you give some examples of companies that are advertising that they are gluten free but in actuality are not? This is a pretty bold statement with nothing to back it up.

T.H. Community Regular

I'm assuming the statement was made with regards to foods sold in the USA, because we have no regulations in effect yet to regulate the gluten free label. It is completely legal to make a gluten free claim with different levels of rigor, some of which are not rigorous enough.

Companies that make the claim that a product is gluten free, but do not test their products for gluten so cannot actually confirm that their products ARE gluten free, are not uncommon. Testing standards can differ widely. Some companies test every batch, some test batches periodically, some only test batches when the product is first being produced, some test ingredients going in and don't test the final product at all - it's all over the map.

If there is no testing or only periodic testing, contaminated batches can fall through the cracks and make us sick. Or sometimes it is 'naturally' gluten free goods that contain gluten above the 20 ppm that most people consider a gluten free standard.

Although to be fair, I've noticed more companies start testing their products over the last year or so, so that's good news.

However, as you wanted some examples, here's just a couple. :-)

Food for Life tortillas - some lots tested at an independent lab show above 20 ppm of gluten. The gal who had these tested made sure to contact the company so that they could hopefully correct whatever problem was causing the contamination, so perhaps that has been addressed now. The original blog posting regarding this has a broken link, but here is a link to another blog reporting on it: Open Original Shared Link

In the above link, it also mentions a study done on naturally gluten free grains and flours, where about 32% were above the 20 ppm standard. The original article for that is no longer up on the web, either, sadly. What I do remember is that some of the flours tested were significantly above 20 ppm. One soy flour was over 2,000 ppm of gluten. 0.0 The study itself declined to mention which brands were tested, however, so we're unable to locate those particular brands.

In September, 2011, when I last contacted Boulder Canyon Chips, they tested the lines for their gluten-free potato chips during a certification period to ensure they were gluten free. After that, the chips are never tested again to ensure that they remained gluten free and uncontaminated unless there was a change in ingredients. Again, this was a little over a year ago, so that may have changed by now.

That's just a few examples, but there are others if you look. Most of the big name companies seem to be testing at least periodically now, that I know of.

However, another potential issue for those who are more sensitive is tracking down the original information for what is 'gluten free.' A great example of this is many of the Frito Lay chips - which I know many here can't eat, but it's a good example so I'll use it.

On a lot of websites with lists of gluten-free chips, they will list a whole slew of Frito Lay chips, like certain varieties of Doritos, Cheetos, Funyuns, and so on. If you hunt down the website, however, you find out that Frito Lay has not made the claim that these chips are gluten-free. Frito Lay has a few chips that they test for gluten, and then a much larger group of chips that they do not add gluten to on purpose, but do not test and do not have them in a situation to keep them as free from gluten contamination.

On their site (Open Original Shared Link ) they list a lot of their chips in the 'no gluten ingredients' category. But this gets passed around the webosphere and becomes 'gluten free' when even the company isn't making the claim.

Also, sometimes on the sensitive section here, people get frustrated because we'd love a reality where 'gluten free' meant '0 ppm of gluten.' That's not the reality, and it's not something that can even BE a reality at the present time and with the present level of technology. But for some folks who react to less than 20 ppm in quantities they would eat during the average day, the gluten free standard doesn't adequately protect their health.

Oh, for the latter? Even the FDA has recognized that the 20 ppm standard is a potential issue for some Celiacs. In the FDA


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



Celiac.com Sponsor (A8-M):



Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

    3. - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    4. - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

    5. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,261
    • Most Online (within 30 mins)
      7,748

    Pbaentine
    Newest Member
    Pbaentine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
×
×
  • 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.