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Local Celiac Support Group's Leader Makes Me Nervous!


Electra

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ravenwoodglass Mentor
Ravenwoodglass,

I have no idea what it would be. I don't think oat hulls are a standard source of cellulose in food.

richard

It was gluten in the mozzarella. This was from Sargento's website, figured you'd rather see that than hear what the rep said when I called. And it was not on the label or I never would have eaten it.

Q. Is there gluten in Sargento cheeses?

We are pleased to tell you that most Sargento natural cheeses should be acceptable to a gluten-free diet. However, there are a few exceptions.

There is wheat gluten in Sargento Blue Cheese. Sargento Imitation Mozzarella Shredded Cheese contains a modified food starch that may contain gluten


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tarnalberry Community Regular
It was gluten in the mozzarella. This was from Sargento's website, figured you'd rather see that than hear what the rep said when I called. And it was not on the label or I never would have eaten it.

Q. Is there gluten in Sargento cheeses?

We are pleased to tell you that most Sargento natural cheeses should be acceptable to a gluten-free diet. However, there are a few exceptions.

There is wheat gluten in Sargento Blue Cheese. Sargento Imitation Mozzarella Shredded Cheese contains a modified food starch that may contain gluten

Well, I think it's important to note that we were talking about *cheese* - not *imitation cheese*. Those are two very different things in many ways.

kbtoyssni Contributor

I'm way late in replying to this, but I'd interpret her comment as "If it isn't labeled gluten-free, you must verify it's gluten-free-ness before eating". Obviously not everything that's gluten-free is labeled, so it is best to call and confirm if it isn't explicitly stated. Good luck at your meeting! You can learn a lot from these "paranoid" types - they may have discovered gluten in places you would never imagine!

jazminecat Newbie
They were exclusively gluten free and extremely junk food oriented. I know full well that I wasn't the only celiac there with other allergies or who would rather not eat tons of starch, shortening and white sugar.

I hear you there! I tried going to the local gluten-free support group once - and not only did not a single person come up and say hello, even though we were the only people there without nametags on - but it was all about what junk food we could safely eat. isn't that what got us into this mess in the first place? I don't eat meat, although I eat fish, eat gluten and dairy free, avoid sugar as much as possible, and still struggle with tomatoes - and not one thing they offered would fit into my diet - not only that, but they weren't even aware what was in things, and i was. I would have thought that people who have to be careful enough to read labels on everything would be sensitive to other people's allergies, but got the brush off when I asked if something had dairy or sugar in it.

Nancym Enthusiast

Well, to be fair, it is a gluten-free group, not a healthy diet group. Expecting people to be into healthy foods just because they're gluten-free is probably not realistic for most people. From what I can tell, most gluten-free people are concerned more about eating as close to however they were eating before they were diagnosed, not in making any additional changes.

Now for me, it changed a lot more than just my gluten status. I started looking at foods as things that can tear down your health or build it.

VegasCeliacBuckeye Collaborator

FYI, I wasn't considering the imitation stuff - That stuff is so gross, I don't know how you could stomach it in the first place :)

The Bleu cheese is a safeguard due to the process that it undergoes. Again, there has been new research and a recent Livin Without article which discusses the bleu cheese dilemma indepth.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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