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      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Mcflurries?
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32 posts in this topic

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.

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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.

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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

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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.

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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.

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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.

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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: http://glutenfreemom.typepad.com/gluten_free_mom/2012/01/gluten-free-watchdog-warning-re-food-for-life-brown-rice-tortillas.html

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 (http://www.fritolay.com/your-health/us-products-not-containing-gluten-ingredients.html ) 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

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