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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.

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12 posts in this topic

Hi everyone

Has anyone else had problems with gluten-free processed products?

Since going gluten-free a few weeks ago, I've had a few episodes of very particularly bad GI symptoms (at lot worse from the generally milder symptoms I'm still experiencing).

Every time this was following eating processed gluten-free products.

One time it was after eating gluten-free vegetarian pie in a local cafe (I don't think I was 'CC'd as they are very respected...).

The other times were after eating the gluten-free pasta or bread that I got on prescription.

Other than the pie, none of the meals contained lactose (which I am avoiding as I am intolerant) so it can't be that.

I have completely cut out these gluten-free products, just sticking to whole foods, and since haven't had any severe GI problems.

I told my dietitian about my body's apparent intolerance to these gluten-free foods and she didn't really seem to believe me. Claiming I had either accidentally consumed products that were wheat- but not gluten-free (they were DEFINITELY gluten-free products) or that I must have IBS.

But I think as its specifically these products, it must be an intolerance rather than general IBS??

Thanks,

Hannah

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This is a well known phenomenon in certain circles.. It is really unfortunate that some doctors and dieticians are unaware of it. It would be good for you to educate yours. This writer explains it better than I can: http://celiacdisease.about.com/od/PreventingCrossContamination/f/How-Much-Gluten-Can-Make-Me-Sick.htm

Basically, there are different levels of tolerance among different celiacs. Some tolerate processed foods without any problems and some don't. I tolerate very few.

You may be able to tolerate some products, or small amounts of some products. What I do is try only one new product per week. I start with only a small amount so as not to make myself too sick if I do react to it. With only one a week, you can tell what is bothering you.

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I don't tolerate processed gluten-free foods, either. There are a few that are certified to lower levels than the average which I can eat and the reaction is not severe, but if I want to avoid all reactions, processed-food-free seems to be the way to go.

That said, you might also want to take a look at what ingredients are allowed in your gluten-free food. You mention that you got the gluten-free food on prescription, so I was wondering if you might be in the UK? In the UK, certain hydrolyzed wheat products are allowed in gluten-free foods. A recent development in tests for gluten, however, has determined that the gluten tests currently in use by the food industry are not as good at detecting gluten in hydrolyzed or fermented products. They underestimate the amounts.

I have spoken to a few celiacs in the UK who were able to eat processed gluten-free food once they eliminated any products that used gluten or gluten derived ingredients, even if those ingredients are considered safe. So if you are hoping to have processed food, or are ever in a situation where you are having trouble finding safe food, that might be worth thinking about, possibly?

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This is a well known phenomenon in certain circles.. It is really unfortunate that some doctors and dieticians are unaware of it. It would be good for you to educate yours. This writer explains it better than I can: http://celiacdisease...ake-Me-Sick.htm

Basically, there are different levels of tolerance among different celiacs. Some tolerate processed foods without any problems and some don't. I tolerate very few.

You may be able to tolerate some products, or small amounts of some products. What I do is try only one new product per week. I start with only a small amount so as not to make myself too sick if I do react to it. With only one a week, you can tell what is bothering you.

I'm glad it's a well-known phenomenon! Thanks, I'll show my dietitian that link if she still doesn't believe me! I definitely feel more in the know than she is, as she is convinced I should be feeling completely fine straight away (despite my attempts at telling her the gastroenterologist told me it could take me years to heal!)

I don't tolerate processed gluten-free foods, either. There are a few that are certified to lower levels than the average which I can eat and the reaction is not severe, but if I want to avoid all reactions, processed-food-free seems to be the way to go.

That said, you might also want to take a look at what ingredients are allowed in your gluten-free food. You mention that you got the gluten-free food on prescription, so I was wondering if you might be in the UK? In the UK, certain hydrolyzed wheat products are allowed in gluten-free foods. A recent development in tests for gluten, however, has determined that the gluten tests currently in use by the food industry are not as good at detecting gluten in hydrolyzed or fermented products. They underestimate the amounts.

I have spoken to a few celiacs in the UK who were able to eat processed gluten-free food once they eliminated any products that used gluten or gluten derived ingredients, even if those ingredients are considered safe. So if you are hoping to have processed food, or are ever in a situation where you are having trouble finding safe food, that might be worth thinking about, possibly?

Yep you're correct in thinking I'm from the UK :). That's worrying about the underestimation of the amount of gluten, especially considering how serious it is for coeliacs to consume it...

At the moment I'm fine with the whole foods diet (although it's a little inconvenient and restricting!) but I think my dietitian would prefer me to be eating the processed food too... :/

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Hi everyone

Has anyone else had problems with gluten-free processed products?

Since going gluten-free a few weeks ago, I've had a few episodes of very particularly bad GI symptoms (at lot worse from the generally milder symptoms I'm still experiencing).

Every time this was following eating processed gluten-free products.

One time it was after eating gluten-free vegetarian pie in a local cafe (I don't think I was 'CC'd as they are very respected...).

The other times were after eating the gluten-free pasta or bread that I got on prescription.

Other than the pie, none of the meals contained lactose (which I am avoiding as I am intolerant) so it can't be that.

I have completely cut out these gluten-free products, just sticking to whole foods, and since haven't had any severe GI problems.

I told my dietitian about my body's apparent intolerance to these gluten-free foods and she didn't really seem to believe me. Claiming I had either accidentally consumed products that were wheat- but not gluten-free (they were DEFINITELY gluten-free products) or that I must have IBS.

But I think as its specifically these products, it must be an intolerance rather than general IBS??

Thanks,

Hannah

Hannah.....if you have only been gluten-free for a few weeks, it's not unusual for anyone to experience a reaction to processed gluten free products. Your gut is still in the infancy of healing and you can have reactions to many foods, without it being related to gluten at all. This is far more common for many people than thinking you are reacting to perceived gluten in gluten-free foods. I would stay clear of them until your gut has had more time to heal and then try them again at a later date. This is the route many people have to go when healing.

I know that the UK has different standards for gluten free than other countries and know that they may use wheat starch in some products. Wheat starch is not allowed in the US and some other countries as some peope react to it. Perhaps you have been ingesting something that contains this and is causing the problem for you?

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Sounds a bit bats for a dietitian to recommend adding processed foods if you are already on whole foods.

Maybe you could speak to them and ask the logic, or if they think you are missing something in your diet.

The only other thing I can think is that some people in the UK (where I am too) think that celiacs will be more compliant and stick to gluten-free better if they have access to gluten-free foods. I think it is linked to the availability of gluten-free foods on prescription.

However if you are happy with whole foods that seems fine.

I just use occasional gluten-free processed food, rice pasta from Doves Farm and brownies. They can be convenient. More than that makes me sick. Some people find once they have healed they can use more products.

Good luck :)

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Hi Hannah

I also so can't eat gluten free processed products or flour.

i am in the UK too and a friend whose daughter is diagnosed celiac told me that I couldn't have celiac if I can't eat the gluten free stuff - it must be something else ??? sigh !!!

I can't eat rice (really bad) or potatoes either so had wondered if due to intestinal damage I am also having problems with some carbohydrates - not managing to digest them. Jury still out on dairy products but luckily don't eat much of it.

I was resentful at first but am fine with whole foods (grain free) so am just hoping that in time I may be able to reintroduce small amounts.

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Hannah.....if you have only been gluten-free for a few weeks, it's not unusual for anyone to experience a reaction to processed gluten free products. Your gut is still in the infancy of healing and you can have reactions to many foods, without it being related to gluten at all. This is far more common for many people than thinking you are reacting to perceived gluten in gluten-free foods. I would stay clear of them until your gut has had more time to heal and then try them again at a later date. This is the route many people have to go when healing.

I know that the UK has different standards for gluten free than other countries and know that they may use wheat starch in some products. Wheat starch is not allowed in the US and some other countries as some peope react to it. Perhaps you have been ingesting something that contains this and is causing the problem for you?

Yeah I think the UK are definitely a lot more lax on what is and isn't 'gluten-free'!. I'm finding a lot of the gluten-free foods I see in shops have barley or wheat starch. I definitely agree on giving my gut as easy a time as possible whilst it's healing!

Sounds a bit bats for a dietitian to recommend adding processed foods if you are already on whole foods.

Maybe you could speak to them and ask the logic, or if they think you are missing something in your diet.

The only other thing I can think is that some people in the UK (where I am too) think that celiacs will be more compliant and stick to gluten-free better if they have access to gluten-free foods. I think it is linked to the availability of gluten-free foods on prescription.

However if you are happy with whole foods that seems fine.

I just use occasional gluten-free processed food, rice pasta from Doves Farm and brownies. They can be convenient. More than that makes me sick. Some people find once they have healed they can use more products.

Good luck :)

Thanks for the advice and luck :). Apart from it being inconvenient (especially when at uni all day!) and time-constricting, I am pretty happy with the whole foods diet. It's not much different to how I was eating before. The main problem is friends etc. wanting to go out for meals, which is tricky enough when you CAN eat the gluten-free processed foods!

Hi Hannah

I also so can't eat gluten free processed products or flour.

i am in the UK too and a friend whose daughter is diagnosed celiac told me that I couldn't have celiac if I can't eat the gluten free stuff - it must be something else ??? sigh !!!

I can't eat rice (really bad) or potatoes either so had wondered if due to intestinal damage I am also having problems with some carbohydrates - not managing to digest them. Jury still out on dairy products but luckily don't eat much of it.

I was resentful at first but am fine with whole foods (grain free) so am just hoping that in time I may be able to reintroduce small amounts.

I'm glad you're the same way, Lady Eowyn, my dietitian still won't believe me when I tell her other people experience it too!

I think my intestines are having trouble with pretty much everything I put in them, but some things (lactose, eggs, processed gluten-free stuff) definitely more than others!

I don't think anyone could have prepared me for the extent of this disease!

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Also, I found an interesting paper today;

http://www.fda.gov/downloads/Food/ScienceResearch/ResearchAreas/RiskAssessmentSafetyAssessment/UCM264152.pdf

It states that, for some people with celiac disease, anything above 1ppm of gluten in food is enough to cause detrimental health effects.

In the UK, any food with under 20ppm of gluten is labelled as gluten-free. 20x the amount found to cause harm in this study!

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That's just some people, but I'm one of them. Most don't have to worry.

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Also, I found an interesting paper today;

http://www.fda.gov/d...t/UCM264152.pdf

It states that, for some people with celiac disease, anything above 1ppm of gluten in food is enough to cause detrimental health effects.

In the UK, any food with under 20ppm of gluten is labelled as gluten-free. 20x the amount found to cause harm in this study!

Ok that paper is a summation of other studies and is enormous. :-S Which primary study does the 1ppm refer to or at the very least where does that paper say that?

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Ok that paper is a summation of other studies and is enormous. :-S Which primary study does the 1ppm refer to or at the very least where does that paper say that?

Sorry, there's a summary on page 46

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