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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.

"gluten Free" Products Making You Sick?
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29 posts in this topic

Hi Padma,

I suggest you review the ingredients of all the gluten-free products that you removed from your diet. Look for all common ingredients. Many, many gluten-free baked goods have both soy and potato flour in them, and dairy and eggs are not rare either. All of these are common food intolerances for many of us, although not all will have any particular one.

Potatoes are part of the nightshade family along with tomatoes and peppers. So if you have problems with potatoes there is a good chance you will have problems with tomatoes and peppers too.

Over the years I have "tested" soy, potatoes, rice, garbanzo flour, other bean flour, etc. Thank God they don't bother me. I think someone's remark that perhaps I have gotten more sensitive could be true. I also think that many of the new products have too high levels of gluten for me. I am still pain free after almost 2 weeks. Gluten pain for me is specific, not general. I have lots of allergies and sensitivities and they have different symptoms. The pain of gluten is like a knife sticking in my gut. I have been hospitalized before it was so acute.

I appreciate the help so many have shared. It is helping me get on a better program of eating. I have been sticking to steamed rice and now added some lentils. I looked to see if there were any grains in there and I washed them really well, just in case. I didn't use to do that. So, thanks again.

I am missing cookies, but probably don't really need them right now. I am eating a date instead. Dates are sweet, too.

I made a kitchari yesterday that was so delicious, it is rice with lentils and Indian spices. I also made a tahini salad dressing which was awesome. So as long as I have some good tasting food, I am sure I am ok. Odd how dependent I have gotten on the comfort of some foods.

I had a huge revelation that good wines made in oak barrels have gluten. They even have a standard in Europe for the amount of gluten allowed! 200 ppm! Also, other wines made more cheaply have gluten additives. So much for a little wine.

Does anyone know if there is research on how much gluten damages the villi in Celiacs?

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As much as I dont want to ,, I have to agree.

I was vegetarian or vegan for most of my adult life. I have desperately tried to keep non-meat sources protein in my diet . My body has decided other wise :lol: The foods I can currently tolerate are meats ,certain veggies ,certain fruits and very small amounts of white rice. I need to listen to my body ;)

I have been free of all grains for almost 2 months now. I have tested a few gluten free foods and a few do not cause a reaction. I am doing much better just sticking with veggies, fruit and fish. I read all your inputs every day and am learning a lot. Thanks.

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Does anyone know if there is research on how much gluten damages the villi in Celiacs?

There is research, but there's no research on this that doesn't have a skew towards the less sensitive celiacs, least not that anyone seems to know about. I couldn't find any, and I started emailing some of the celiac research centers in the US. They either told me they didn't know of any without this bias either, or directed me to research that HAD the bias, to show me an example of 'how much gluten celiacs can eat.' <_<

So far, there are a few studies on celiacs and how much gluten they can eat without villi damage. Here's the problem, though. To be a participant in these studies, a person needs to be healed to a certain level.

Where the studies have been done, the gluten free standard has ranged between 20-200ppm of gluten (The amount has dropped over the years.). And what have the celiacs been doing to get well before they entered the study? Eating this gluten free food, usually, which means the celiacs participating in these studies had to have HEALED while eating a diet of 20-200ppm of gluten (or a little less).

And then the tests discover that - surprise! - celiacs can eat just a little less than 20-200ppm per day and they don't have villi damage. :rolleyes: Well, duh. That's like saying you can only come into a club if you have a purple shirt, and then doing a survey inside and concluding that purple is the most popular color.

As the gluten ppm has dropped over the years, so did the amount of gluten that didn't damage celiacs in the studies. That would seem to support the concept of the bias existing, to, IMO.

For an amount, though, the last test said that 50mg a day was safe, as I recall.

There was just one anomaly in that 50 mg study, which I take to be a person like us, who figured out what he had to stop eating and healed without eating gluten-free products. He had a clinical relapse, vomiting, the big D, etc... And his trial gluten amount was 5 times less than what they concluded was safe. He dropped out early because he was so ill, so they didn't include his results in the study.

I truly hope that someday, they look at recently diagnosed celiacs and try to see if they can get them to eat a gluten free diet of X ppm and then see how well they heal! And how quickly, you know? THEN you could do the same 'how much is safe' test and you'd have a more randomized trial, i think.

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I wonder too about the biopsy for villi damage being used to determine reaction. Surely there is other damage that occurs before the villi are damaged enough to be seen with a biopsy.

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    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • 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? 
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