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Mcflurries?
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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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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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