Interesting Info

[CMCM]

I put this post under "travel", but thought many might miss it so I'm putting it here too. I thought this info was interesting....

____

In the book "Living Well with Celiac Disease...Abundance Beyond Wheat & Gluten" by Claudine Crangle, she makes this comment:

"In Europe the celiac diet is considered "gluten restricted" rather than gluten free. Trace amounts of gluten in a product are permissible...food products can still contain a minute amount of gluten and and be marketed to those on a celiac diet.

_______

This Canadian author also says: Some foods including quinoa, millet, buckwheat and amaranth are permitted by the Canadian Celiac Association." She says she has never suffered from eating them in her own diet. She also said that those grains/grasses are not related to wheat, but they are simply considered questionable by the CSA/USA because of the molecular similarities between them and gluten-containing grains.

Another point she makes: The process of distillation leaves the end product free of any traces of gluten even if the grains from which the product was made contained gluten. This makes vinegar and vanilla extract gluten free as well.

ALSO PERMITTED under European standards, but because of the trace amounts of gluten they may contain, these two things are not considered part of the permissible part of the gluten free diet in America:

OATS: not promoted in the U.S. because there are some similarities between the makeup of oats and other gluten containing grains. Milling cross-contamination risk is also high.

WHEAT STARCH: In theory the process to produce this (separating the starch from the other parts of the wheat) should eliminate gluten, but trace elements may still be present in the starch. But this is permitted in European countries where more allowance is given to the presence of traces of gluten.

_____

No wonder we don't know what to think with all the difference of opinion!

[plantime]

I guess this is why we have to work so hard at taking care of ourselves! I don't understand how they can justify allowing trace amounts, when even that little bit causes reactions in the gut.

[tarnalberry]

WHEAT STARCH: In theory the process to produce this (separating the starch from the other parts of the wheat) should eliminate gluten, but trace elements may still be present in the starch. But this is permitted in European countries where more allowance is given to the presence of traces of gluten.

It's important to note that European wheat starch is different than American wheat starch, and is more highly refined, and - when approved for use in gluten free foods - contains less gluten than American wheat starch.

[nikki-uk]

See my attempt of an explanation in this thread!Open Original Shared Link

Sorry the link didn't work-but my explanation of UK wheatstarch is in gluten-free Travel

'Definition of Gluten Free in Europe'

[elye]

It would be very telling to see biopsies of celiacs in the UK on their permissible diet, and compare them to ours in North America with our zero-tolerance diet.. If you follow an almost-gluten-free diet, what does the damage look like in a couple of years? I could choose to do this (I haven't) because I'm not symptomatic when I get glutened. Are European celiacs living with minute amounts of intestinal damage that will have minimal or no effects later on? Has anyone been eating a gluten-restricted diet for some time, and had a biopsy done?

[nikki-uk]

Yes there are plenty of Coeliacs in the UK who eat Codex on a regular basis and have had biopsies that were ok.Not sure about long term though(20yrs+)

There is a heated discussion about this subject on a UK board(scroll down to Zero Gluten Movement )Open Original Shared Link

[CMCM]

Yes there are plenty of Coeliacs in the UK who eat Codex on a regular basis and have had biopsies that were ok.Not sure about long term though(20yrs+)

There is a heated discussion about this subject on a UK board(scroll down to Zero Gluten Movement )Open Original Shared Link

Nikki...I'm curious...are doctors in the U.K. any more knowledgeable than they are here (which is not much in most cases!) in terms of diagnosing celiac? Is there more awareness there? It's such a battle here, it often seems like the only ones who know much and are clued into this are the celiacs themselves!

[nikki-uk]

-SIGH- I'm sorry to disappoint you,but the situation here is much the same regarding medics.

My husband was dx at 40yrs(dx is nearly always by biopsy in the UK)-by that time he was seriously ill.(I also think he's had celiac disease since childhood-always been very skinny,fatigued easy etc)

He's been seeing a gastro for around 18months for burning pain in stomach,(also crippled with arthritis by this time)-but it was collapsing at the docs after a 2 week spell of diarrheoa and being severly underweight that finally got their attention.

After 1 month in hospital he finally got a dx.

I can safely say that as his wife I know more about celiac disease than our GP,Dietician and possibly the gastro himself!

To give you some examples:

I wanted my gp to do blood tests for celiac disease on our children,but he said he'' didn't know what ones to do-and as they are asymptomatic they don't need to be tested''

After a repeat biopsy at our local hospital,when coming round from the sedation,myhusband was told he must eat and drink a little before being discharged-

He was offered Tea and Biscuits

N.B Note to self,don't go into hosp if you have celiac disease-you'll starve!

Unfortunately I think people get fobbed off with the old 'It's IBS',and unless your symptoms are typical or in my husband's case acute then the docs rarely think of celiac disease as being a possibility.

People in general in the UK do not know what celiac disease is and have never heard of it

[jerseyangel]

Sorry you both had to go through all that--I guess we're all in the same boat

[elye]

Yes there are plenty of Coeliacs in the UK who eat Codex on a regular basis and have had biopsies that were ok.Not sure about long term though(20yrs+)

There is a heated discussion about this subject on a UK board(scroll down to Zero Gluten Movement )Open Original Shared Link

Nikki,

What a fascinating read that UK board is! Everyone should take a look at it, especially we North Americans. Such a different opinion, in many instances, of what "gluten-free" means, and the role it should play, if any, in the celiac diet. Again, being someone who can eat gluten without intrusive symptoms, I really want to know who's right...the zero-gluten world of North America, or the maybe-small-amounts-are-okay camp in Europe?

[CMCM]

That UK site was very interesting...set up a lot different from this one! I swiped this bit of info from there...kind of interesting.

_________

Gluten free - what is it and do we need it?

Professor John H Cummings

Professor of Experimental Gastroenterology

University of Dundee

....no one really knows how much gluten can safely be tolerated by people who have to take a gluten free diet.

With the new R5-mendes ELISA method for measuring gluten in food, it is

now clear that there is gluten in many foods previously thought to be gluten

free. A particularly striking example has been the demonstration of the

contamination of oats with substantial levels of gluten, whilst some studies

show even dairy and meat products to contain traces of gluten.

However, most coeliacs have been eating these products without any

problems and current research shows that newly diagnosed coeliacs, when

put on diets containing wheat starch based products with detectable amounts

of gluten, still recover as rapidly and as completely as those on totally gluten

free diets. Significant tolerance, therefore, already exists in the gluten

sensitive community.

.....There may not in reality be such a thing as a gluten free diet unless it is based

entirely on fruit, vegetables, eggs, dairy products and fresh fish and meat.

However, it is clear that there is some tolerance of gluten in coeliac disease

but the exact levels need to be carefully determined and the amounts of

gluten getting into food, particularly those which are thought to be naturally

gluten free, needs to be reduced. The long term consequences to health of

having small amounts of gluten in the diet are unknown but everything at the

present time points to the known complications of coeliac disease being

reduced on presently conceived gluten free diets.

__________

The bottom line is.....WE'RE OUT IN THE WILDERNESS WITH THIS....we just have ourselves to ferret out whatever information we can. We can't depend on the medical profession..yet. Most doctors are clueless, most countries are clueless, heck, most people are clueless. Survival of the fittest!!!

[jerseyangel]

God help us all

[TinkerbellSwt]

I just wanted to thank everyone who posted here. It was interesting to read about the European differences compared to USA. I for one, stay completely away from gluten, as far as I can help it. I have gotten glutened a few times, but they have been minor. The one time it was big enough to have a major stomach problem reminded me how bad I felt before being gluten free. I for one, do not want to go back there for any reason.

Tinkerbell

[CMCM]

I just wanted to thank everyone who posted here. It was interesting to read about the European differences compared to USA. I for one, stay completely away from gluten, as far as I can help it. I have gotten glutened a few times, but they have been minor. The one time it was big enough to have a major stomach problem reminded me how bad I felt before being gluten free. I for one, do not want to go back there for any reason.

Tinkerbell

Wise words! We're much better off not fighting the inevitable! When I recently got to that point, where eating the food isn't worth the upset and pain associated with it, then food loses a hold over you and it's actually fairly easy to stay away from things. At least, that's what I'm finding lately. I suppose it could change....but I don't think it will. Those foods I loved just aren't part of my life anymore, and I'm OK with that.

[McDougall]

I put this post under "travel", but thought many might miss it so I'm putting it here too. I thought this info was interesting....

____

In the book "Living Well with Celiac Disease...Abundance Beyond Wheat & Gluten" by Claudine Crangle, she makes this comment:

"In Europe the celiac diet is considered "gluten restricted" rather than gluten free. Trace amounts of gluten in a product are permissible...food products can still contain a minute amount of gluten and and be marketed to those on a celiac diet.

_______

This Canadian author also says: Some foods including quinoa, millet, buckwheat and amaranth are permitted by the Canadian Celiac Association." She says she has never suffered from eating them in her own diet. She also said that those grains/grasses are not related to wheat, but they are simply considered questionable by the CSA/USA because of the molecular similarities between them and gluten-containing grains.

Another point she makes: The process of distillation leaves the end product free of any traces of gluten even if the grains from which the product was made contained gluten. This makes vinegar and vanilla extract gluten free as well.

ALSO PERMITTED under European standards, but because of the trace amounts of gluten they may contain, these two things are not considered part of the permissible part of the gluten free diet in America:

OATS: not promoted in the U.S. because there are some similarities between the makeup of oats and other gluten containing grains. Milling cross-contamination risk is also high.

WHEAT STARCH: In theory the process to produce this (separating the starch from the other parts of the wheat) should eliminate gluten, but trace elements may still be present in the starch. But this is permitted in European countries where more allowance is given to the presence of traces of gluten.

_____

No wonder we don't know what to think with all the difference of opinion!

I put this post under "travel", but thought many might miss it so I'm putting it here too. I thought this info was interesting....

____

In the book "Living Well with Celiac Disease...Abundance Beyond Wheat & Gluten" by Claudine Crangle, she makes this comment:

"In Europe the celiac diet is considered "gluten restricted" rather than gluten free. Trace amounts of gluten in a product are permissible...food products can still contain a minute amount of gluten and and be marketed to those on a celiac diet.

_______

This Canadian author also says: Some foods including quinoa, millet, buckwheat and amaranth are permitted by the Canadian Celiac Association." She says she has never suffered from eating them in her own diet. She also said that those grains/grasses are not related to wheat, but they are simply considered questionable by the CSA/USA because of the molecular similarities between them and gluten-containing grains.

Another point she makes: The process of distillation leaves the end product free of any traces of gluten even if the grains from which the product was made contained gluten. This makes vinegar and vanilla extract gluten free as well.

ALSO PERMITTED under European standards, but because of the trace amounts of gluten they may contain, these two things are not considered part of the permissible part of the gluten free diet in America:

OATS: not promoted in the U.S. because there are some similarities between the makeup of oats and other gluten containing grains. Milling cross-contamination risk is also high.

WHEAT STARCH: In theory the process to produce this (separating the starch from the other parts of the wheat) should eliminate gluten, but trace elements may still be present in the starch. But this is permitted in European countries where more allowance is given to the presence of traces of gluten.

_____

No wonder we don't know what to think with all the difference of opinion!

I thought the British were smarter when it comes to Celiac, but maybe I'm wrong. I traced my recent sickness to distilled viniger and alcohol that I thought were ok. Kraft Mayo makes me gluten sick for example. I don't buy the trace gluten is ok for one second and no longer trust the distillation process removes gluten.

[CMCM]

My mom is very careful with mayonnaise....she gets a good one from Trader Joe's. As for vinegar, she only gets it if she knows the source of the vinegar. I don't know if she has had trouble with these items or if she's still just super-careful. When she was first diagnosed 40 years ago, labeling was terrible and she really had to be careful.