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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.

What Do You Think Of This Article Saying Celiacs Can Consume Gluten?
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15 posts in this topic

http://jacksonville.com/opinion/blog/455301/mark-basch/2011-08-09/researcher-says-proposed-gluten-free-standards-are-sound

Doesn't this just sound wrong? Everything I've read and researched seems to say you can't have any gluten what so ever if you are celiac. The leading dr at University of Chicago Celiac Disease Center says celiacs can have up to 10 mg of gluten a day safely. It doesn't come across as correct for everyone.

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I think it would be confusing for some. I think the point of the article is that if the Dr's are saying 20 ppm is okay, that the person writing the article is fine with the new FDA proposal.

I do not think they are suggesting going out and eating 1.2 lbs of "gluten-free but 20 ppm" foods.

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I haven't seen the studies, but the concept is valid.

Let's assume the limit is 20 ppm. Now that does NOT mean that the product will actually contain 20 ppm--it just sets a bar that can be tested for. Content levels far less than 20 ppm are, well, less than 20 ppm.

Parts per million is only half the story. As noted, it also matters how much of the food you consume. Ten grams of food at 20 ppm is the same amount of gluten as 40 grams at 5 ppm.

So what Dr. Stefano Guandalini is saying is that in the worst case, where all the gluten-free food you eat is right at the 20 ppm limit, you would have to eat at least 500 grams (1.1 pounds) of it before it became problematic.

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I am not diagnosed as celiac but have found that I have greatly improved my health by going gluten free. Everything from my fatigue to the dizziness and brain fog I was suffering from has disappeared. 4 weeks ago I could hardly get out of bed and if I wanted to mow my back garden it would take me 4 days (and my garden is not that big) because I would have to keep stopping due to feeling ill. However recently I managed both back and front in the same day and had energy left over to trim the hedge. Its strange as I am not used to feeling this well. I have felt like death warmed up for years, which my drs kept putting down to anxiety and depression. Therapy and meds did nothing to help though.

Now, I am still not quite 100% but each I day I feel a bit better. I almost feel 18 again in some ways.

However if I eat even small amounts of wheat or gluten I will start to see the return of some of the symptoms that now seem to have vanished. So I would rather not expose myself to any gluten at all!

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I think it would be confusing for some. I think the point of the article is that if the Dr's are saying 20 ppm is okay, that the person writing the article is fine with the new FDA proposal.

I do not think they are suggesting going out and eating 1.2 lbs of "gluten-free but 20 ppm" foods.

You are so right....I was really actually reading it wrong. I guess most people would read it like I did though. Very misleading the way it was explained. :blink:

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i wish they would not say stuff like that. i find such "research" highly questionable. it makes people think it is not a big deal and so they can do more damage to their bodies. when cc can be such a problem i find it really hard to believe any amount of gluten is ok let alone a substantial ppm of gluten. i think the labeling needs to say how much ppm of gluten there is in it. and only truly gluten-free food should be allowed the label to me if it has #ppm then that is not gluten-free. to be gluten-free needs to be naturally gluten-free foods.

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I agree with Peter & the poster before me....even 20ppm which is just a guideline can send many to the ER indistress... With all the research it still is just research at this point... For me this lifestyle has changed my health issues so much I can't fore see ever eating gluten againin my life even with the magic pill...Our food supply has become so genetically altered that I feel more problems from this unfood( chemical food) will be on the rise from eating this...

Call me silly...... SIlly Yak that is!!!!!

blessings

mamaw

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This is exactly the reason that I am AGAINST the Coeliac Society of Australia! :angry:

They are planning to change the legislation in Australia so that 20ppm is allowed in our food. The ACCC to date have refused to take their request on board, thank goodness :P

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This article is about the effects of gluten on the small intestine, not about the other symptoms that can accompany eating gluten.

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This article is about the effects of gluten on the small intestine, not about the other symptoms that can accompany eating gluten.

Yes, but that doesn't help us as consumers trying to find food that doesn't make us feel ill. Just be sure to write the FDA if 20 ppm food makes you sick.

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it might be helpful if the FDA illustrated exactly what 20ppm looks like, so consumers will know what a "safe" portion size of gluten looks like. I'm guessing it's quite small.

Even so, I do think that article just confuses the matter for a lot of people. I have a friend whose doctor told her she has a "mild reaction" to gluten, (ie: no painful intestinal problems) my friend took that to mean that she has a "mild form of the disease" so she freely eats gluteny foods until she feels ill. :huh: I've tried more than once to explain to her that Celiac is Celiac, you either have it or you don't, and you'd stop feeling ill altogether if you just go entirely gluten free.

The disease is difficult enough as it is, without confusing and conflicting information coming from "experts".

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I critiqued the article earlier in the publications section.

I started something a bit more incendiary here, but decided not to hit "post."

This is a terrible, flippant article, ("one researchers says.... " is not good sourcing) and I disagree with the theme and conclusion.

The person who wrote it is a business writer and a newly diagnosed celiac, < less than a year, he has done only some reviews of gluten free goods and restaurants. The objective of a business writer for mainstream media these days in states like Florida is to promo stuff for investors.

The researchers at these Universities want money to run their various programs.

Now, the details are, if you read the fine print at FDA, that these are proposed rules that might be instituted by the year 2012. which just happens to be an election year.

Take it with a grain of salt, I certainly am, they've been studying this for years and they think they're doing us a big, fat favor if they work the rules so we potentially get to have more so - called "gluten - free" labeled food imported from Europe, which actually contains processed wheat starch. The writer did not mention "Codex" standards, or go into the details of what Europe does and why he thinks that is appropriate.

Read the research literature, a lot of celiacs in Britain are not doing as well as could be expected on a gluten free diet.

This is the same government which decided to re work the standards for the school lunch program, and signed off on a bill from Congress, so it actually contains MORE USDA GOVERNMENT SUBSIDIZED GRAIN requirements, more grain servings, and less other starch sources such as from potatos and beans. What is the actual result of such a thing ? A bigger subsidy for gmo's, bigger research $ for Monsanto, and more gluten in your school kids' diet, when we actually have an increasing number of people developing celiac and gluten intolerance.

So we ended up going backwards under the guise of "better nutrition" again.

We need to emphasize that whenever wheat, rye, barley are actually IN THE INGREDIENTS of a product, they MUST BE called out on the label, or these new standards are meaningless.

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Yes, but that doesn't help us as consumers trying to find food that doesn't make us feel ill. Just be sure to write the FDA if 20 ppm food makes you sick.

Yes, but my point is to the OP who says the article sounds wrong.

It's not about feeling sick, it's about damage to the small intestine.

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Yes, but my point is to the OP who says the article sounds wrong.

It's not about feeling sick, it's about damage to the small intestine.

True, and the research that most celiacs can eat 20 ppm food without damage on current tests is reasonably convincing. I'd be more convinced if it didn't make me sick, though. It's hard to believe food that makes you feel sick isn't doing damage on some level. Microscopic examination of villi and looking for so many autoimmune antibodies that they're out in the blood is a horribly crude way of testing for autoimmunity. I want to know what we're failing to measure by using inadequate diagnostic tests.

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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