gfp

Well isn't that odd! I just assumed Celiacs would react the same way every time, except maybe with varying degrees of severity depending on how much gluten they actually got. Just when I think I've figured this disease out!

I think there is react and REACT .. if you see what I mean.

Last weekend I got some CC, I spent Sunday in bed feeling like I'd been kicked in my guts...

Other times I have been really bad (after an accident) ... and the reaction has been minor..??

The reaction doesn't seem to have any correlation with the amount of gluten... and some symptoms might appear and not others...

I had one roommate, an avid lover of all things sweet, glutenous, and baking sweet, glutenous things, who glutened me just a tiny little bit every time I turned around. It was too little to really have a reaction, but enough to send me to the doc to see what was up. Doc was less than helpful, but I felt better after I got away for a weekend, then came back and had true reactions when I stayed there.

Unfortunately this is the case for many...

We don't realize the little CC issues until we are gluten-free for some time, often longer than a weekend.

Sharing a kitchen, unfortunately we are constantly being CC'd because try as we might other people won't have the same mindset towards gluten as we would have. They don't need to be deliberately careless, just less than 100% ALL the time.

So many people share kitchen's but have never tried being truly gluten-free. They believe they are not CC'd, yet many times those that try will find they had little problems they hadn't attributed to gluten that go away when they are truly gluten-free.

If you do share a kitchen you are not strictly gluten-free, like eating CODEX wheat starch. For many it seems that the reaction is masked by the constant small amounts until they actually make the change to 100% gluten-free.

Here's my question: After eliminating gluten from the body, do the effects of eating it increase over time? He thinks that wouldn't really happen in the body physiologically. Basically, his opinion is that the effect of the allergy will be the same.

Well, tell him to start smoking and slowly build up to 100 a day...

Then he can give up....

After 3 months tell him to sit and smoke 100 cigarettes in a day ???

Or he could just look at it this way!

The body gets used to dealing with the toxin, just like a heavy drinker or smoker.

Someone who takes heroine everyday can take enough to kill 5 normal people....

Gluten is an exorphin, that is it binds tot he same recepters as opiates like heroine.

I don't seriously expect him to start smoking.... I do think he should consider looking at it from your perspective as both a gluten junkie and someone who's body became accustomed to dealing with it.

Hey Elonwy, what was the name of the place with gluten free croissants and foods? I'm moving to Paris and am desperate for good gluten free food.

Thanks!

Most healthfood storews have some gluten-free selection however it can be patchy and the same store may not restock some items ... and the same chain might not carry the same items etc.

Naturalia does a whole thing about gluten-free bread but they REALLY DON'T HAVE A CLUE ..As already said the 'fresh gluten-free' bread is kept on the same shelves (unwrapped) as the normal bread.

Le Reminet : The owners got divorced and sold ...

My site no longer exists due to lack of interest... I couldn't get any input from anyone to contribute.

Overall, I'd recommend a appartment hotel where you can cook for yourself.

Paris is FULL of proper markets with fresh produce.

just because the 'majority' of Celiacs don't react to a certain level doesn't mean that it's not affecting their body, and you should allow gluten at all in something that is supposed to be 'gluten free'!!

CUK are funded by the food companies....

It is convenient for the food companies to be able to call gluten-lite glutenfree.

There is NO evidence at all that this does not cause damage to any c(o)elaic...

In your case you may be super-sensitive in relation to gluten but the majority aren't.

there is NO evidence for this. CUK will not provide it nor back it up because they are paid for from the food manufacturers.

Besides: this defies all logic....

10 years ago diagosis was 1:5000 people... then it was good enough to say we should have gluten-free food.

Now CUK are saying (without any evidence) that if it makes a minority sick then its OK.

My understanding is that the U.K. has some of the best food labelling regulations that there are. Due to pressure form Coeliac U.K. food manufacturers clearly label products that contain Gluten and also foods which although they do not contain gluten are produced in a plant where other products do contain gluten and therefore there is a risk of cross-conrtamination.

CUK actively campaigned AGAINST better labelling because they said WE were too stupid to read it (well they actually said it was 'confusing')

CUK get paid for inclusions in their directory: CUK wanted everyone to have to use thier directory...

Evidence did exist: CUK partly sponsored the study.. when the study proved small amounts of gluten damaged celiacs they buried the study...

In comparing the UK to much of the rest of the world we at least aknowledge coeliac disease and even provide foods on presription through our National Health Service.

No we do not, almost all foods available on prescription are NOT gluten free (again thanks to CUK) but gluten free according to the Codex alimentarius

People think they can't have chocolate on a diet, but that's not the case. I've been on a diet for the last six weeks, and I've lost five lbs, and I still eat chocolate. What makes a difference is the type of chocolate and the amount. If I get the Ghirardelli dark chocolate chips, they are 5 calories each. (They are larger chips.) I can have as many or as few as I want depending on my calorie budget for the day.

The reason why dark chocolate is key is that I actually get chocolate, and satisfy my chocolate craving before I get hooked on the sugar. When I eat a whole bag of M&Ms I don't necessarily satisfy the chocolate craving, but the sugar makes me crave more sugar and more junk. 50 calories worth of dark (about 70%) chocolate is perfect for cravings.

If all you do is count calories then you can eat anything you want...

The problem is it doesn't make it healthy. If you are counting calories then every empty calorie is a waste.

The BBC ran an article on the olympic swimmer who eats 11,000 calories of absolute crap everyday... his diet is junk... he doesn't make a single concession to healthy foods... but he's burning 11,000 a day so he can eat crap and still have enough minerals and elements to actuallly be healthy. He also has a full time coach and medical testing ....

1200 is very low which doesn't mean its not the correct amount for MinnieM but it is dangerously low in terms of nutrition unless its done carefully. It's the opposite of the swimmer ...

For a celiac who has adsorption problems this is even more critical.

Cravings are usually a sign your diet is missing something...

As others have said 1200 is low.... very low... and pushing the limits unless you make sure everything is balanced and nutrient packed.

I don't see it on the label either. That's why I was asking about it. I've actually been using it anyway. My hair is very picky and that seems to be the only shampoo and conditioner that work well for me. I've heard about Dove and Suave but both leave my hair feeling nasty. I'd rather chance it and have nice hair. =)

I think mostly our hair just gets used to a product..... I'm not saying one isn't better or fels nicer but that over time your hair adjusts to whichever product you're using.

Your water can also be a big contributer...

Those are definitely possibilities, and you make a good point about it being one less thing to worry about in the morning if you know your shampoo is gluten free.

Like I said, I read the labels on the shampoo I had when I decided to go gluten free. Nexxus actually had wheat FLOUR in it. Ugh. Tossed it out. I read on here that Suave does not hide wheat on their labels, so if they put wheat protein in it, it's on the label as wheat protein, not a fancy botanical name. More and more labels are doing that.

I read my Suave and herbal essences labels, and none had wheat on them. So I continue to use them. I didn't look up all the chemically names on there to see if they were wheat derived, though, so I'm not 100% sure they're gluten free, because the label doesn't say "gluten free".

I feel comfortable with this level because, as I said, I have yet to get shampoo in my mouth. Others may not feel comfortable with this and want to get a shampoo/conditioner that states "gluten free" on the label. I just wanted the OP to know that according to an expert, the gluten protein can't be absorbed through unbroken skin, so on that basis, there's no need to worry overmuch.

I am about the same... luckily I do know the scientific names so it's easier ...

My incident in question was quite embarrassing. I'd actually run out of soap and had a old bottle (a present from an aunt) of shower gel I'd been using all week.... to cut a long and embarrassing story short .... I got caught short... the bar toilet was engaged and I had to go home to 'clean up'...

As I'm showering (cleaning myself up) the shower gel say's right on the front in BIG LETTERS ... "Enriched with pure wheat protein" ...

The bathroom trips have been increasing in frequency over the past 6 weeks from once every other week to once a week to twice a week to every other day to every day to multiple times a day - which doesn't seem like a bug to me. Either way, I have been trying to push fluids on him. Losing fluid no matter the reason is never good. As far as the colors, he says no odd colors. Just greasy looking runs or soft stools that float.

-Anna

Either 6 weeks is too long for a bug or he has a bad one ....

Either way it should be simple to check the stool for an infection ....

I have a friend who gets seizures from gluten and got herself into a state of fasting ... but everytime she did she still got seizures.

I also noticed this effect on myself (not seizures but glutening) but I lost a LOT of weight last year ...

So it's just a personal theory ... but I think for celiacs our body might do what we know it does for many toxins... surround them in cellulite and hide em away... (guy's do get cellulite its just more hidden)...

This could be a good thing in the long term but just for peace of mind perhaps I'd see a Dr. and test for parasites?

If my theory is correct he would be producing antibodies as the gluten is released...

Given they are not so expensive but drop the bowl and oops... ??

I have a cheap one (forget the brand and its boxed and packed pending moving) and it works fine...

Size wise, I think I'd rather have 2 cheap ones than one expensive one ??? (more flexibility on portion size since you more or less have to cover what your cooking)...

Why not see what is the best deal?

"I doubt your beyond this..."

Whether you believe it or not, this makes absolutely no sense. Is "your" supposed to be "you're?" And "beyond" what?

Still awaiting your proof of Cynthia's sellout. I have to assume you have none.

richard

You seem to be just looking for an argument and I really can't be bothered to argue with you.

There is a school of thought, though, that it is too easy to get shampoo or conditioner into one's mouth while showering (I have never had this happen), or if there are traces of the gluten on your hands, and you put your hands in your mouth, et cetera.

But I bet you know how it tastes ???

I think its next to impossible not to get any shampoo into your mouth when showering... certainly you can be extra extra careful but then you breath the odd bit in (which end up in your back of the throat) ...

As for adsorbing.... I dunno but I do know I think its a bad idea to get it into your bloodstream and if you have cuts/spots etc. then this is quite easy... as you tend to scrub a bit and perhaps open a half closed wound when showering.. ???

Its just my 2c but I find it easier (after being caught out) to make sure the bathroom stuff is gluten-free then I don't need to worry each time !! I'm not saying you can't be real real careful...I'm just saying I shower half asleep (leastwise the first minute) and making sure I don't have a cut or spot open is not my number one thing in the morning.

I think it's called phlegm. Here's a link to some info about how to get rid of it:

Open Original Shared Link

I've done ALL of that.. and it just keeps coming back!

Thank you for the input. My husband is pretty much willing to do whatever it takes to keep me outta the hospital so I will suggest some more practical things for him..

Your Hubby sounds great.... make sure you do keep him up to date as things change... we all start this journey confused... and sometimes we forget to keep partners up to date... and forget its confusing for them too.

As a guy (like me) your hubby will feel a bit powerless over something affecting someone he loves so much .. keep him as infomred as you can (it's a guy thing)...

.as far as cooking, its pretty much all I do! I like to cook and have found some great recipes and things to try...its only been the times I have NOT done the cooking that I have gotten so sick.

Welcome to the Discovery phase.... you're doing GREAT!!!!

I guess I never though I would be "one of those people" who feels nearly dead when ingesting some sort of item containing gluten.

you and me BOTH .... I though hey, Ive been eating this for 30 yrs... how much can a trace hurt..???

Please ... stick to what your body tells YOU.... do not cave in to those who say ... hey eating outs fine... or gluten-lite is OK...

Its tempting.. non of us got into this by design..most of us started out thinking gluten-free was a simple matter of bread and pasta...

After tonight I was just so frustrated and discouraged because getting that sick is not something I would wish on my worst enemy, yet it keeps happening no matter the precautions I think I am taking...I am really a bit gun shy of anything I eat now that I did not physically make for myself. I just had no clue what the implications and fallouts comes with having celiac but the truth is I just need to everything in my power now to protect myself and keep my body healthy no matter how strict or rigid it might seem to other. This forum has been such a life saver, and eye opener and generally a good support for what occasionally feels like an uphill battle. I have so much respect for people who have done this for years and years and those with chronic illness always trying to manage it....what amazing people.

Keep doing what you are doing.... the light at the end might seem a LONG LONG way away but its closer than you think!

As your health improves with the gluten-free diet you will find each day gets easier until that light is suddenly right befoe you and you wonder how you missed getting so close!

Hi, glad you enjoyed your trip to the U.K.

Because of Coeliac UK, the Coeliac society here in the Uk, a massive amount of pressure has been made on food manufacturers and supermarket chains to get foods clearly labelled. This has worked and when it comes to shopping it is very easy to spot safe foods as they should have the crossed gran symbol on them and alongside the ingredients list a section clearly showing any major allergy concerns such as - contains gluten, nuts, eggsm milk etc. Also, there is now a much enhanced range of gluten-free foods available from both UK and overseas food companies.

As in any country, there are always pitfalls when it comes to eating out. Again, thanks to Coeliac UK, more restauraneurs are now aware of special dietary needs and can cope. But wherever you go you will always come across people in the catering trade who have no understanding of the condition or treat it as a chosen option like vegetarianism as opposed to a medical condition.

*note over here we spell Celiac with an 'o' in it - don't ask me why

Actually CUK have campaigned for what they claim to be clearly labelled.

some facts:

CUK have trademarked the crossed grain symbol. Companies cannot use it without paying a royalty.

Most small resto's etc. obviously can't afford this....

CUK finding is almost entirely from the food industry. They are a registered charity and hence must publish their financial reports.

A limited company exists at the same address with the same directors (or did last time I checked) you can find this on companies house web site. This company pays no rent to the charity (according to the year end financial report) and its directory undertake consultancy work...

CUK hide research that disagrees with their policies and goals, even when paid for out of the charity.

CUK campaigned for gluten-free to be gluten-lite. <200ppm gluten ... in the UK. GIG are supporting the same in the US but at least Cynthia Kupper said there is no scientific evidence that this does not cause harm to ce(o)laics.

CUK campaigned AGAINST having allergens listed .... Its statement said this would be confusing to its members who should use the gluten-free food and drink directory.

In almost all cases the head office would seem to be more strongly protecting the interests of those that fund it than its members.

This doesn't mean individual regional support groups are bad... just that the food industry is exerting far too much control.

Sorry, I can sympathize but have yet to find the cause.

I have had this for years.... it is HORRIBLE... I retch every morning trying to clean my teeth.

I'm constantly bunged up and excess mucus...

I use salt dissolved in boiling water and then left to cool which alleviates the problems but doesn nothing to cure them.

I use an old spray dispenser (which contained allergy nose spray) to deliver it....

My Dr. has had me on ... antibiotics (which takes a lot to get me to take)... followed by anti fungals ....

Things seem to clear up for a week or so only to come back....

Its exhausting.... I don't think unless somepne has experienced this for months on end they can even guess how fatiguing it is...

My Dr. did suggest a MRI to look for polyps. I have yet to do this.

After almost 4 months of being gluten free, hubby has recently started having sever digestive problems and is running to the bathroom after every meal. I have never seen him so sick. We have decided to put him on a diet of only meats, some veggies, some fruits and rice to see what he is allergic to by slowly adding one thing back into his diet at a time. He started his new diet mid afternoon today and I know it'll take a while for his stomach to settle down but I was wondering if anyone has any other advice for the poor guy. Thanks!

-Anna

Well, other than having a wonderful wife who is doing 101% what can we say ?

Are you gluten-free? It will reduce risks.... has he started taking more risks?

Has he lost weight? I have seen cases where gluten seems to have been stored up and whenpeople loose weight seems to get released? (or at least this has been the simplest explanation)...

jewlesD

You are doing everything correctly.

Your reaction is extreme.... but there is a good chance you will recover slowly and the reaction will be less pronounced.

HOWEVER: Things can get worse for a short time before better.

Meanwhile:

I strongly urge you to read up on cross contamination and hidden gluten if you didn't already.

A lot of people on this board (well actually a small minority) don't like me because I advocate a strict gluten free diet and this burst's their bubble. They like to pretend at being gluten free and don't like being told McDo's fries are not gluten-free and some hard liquor contains gluten etc. .

You are just going to have to ignore these people.... people like you are the reason I stick to my strict stance (along with long term risks) (I also have a friend gets seizures with a trace of gluten)

Your hubby sounds incredibly supportive.... he is your biggest asset to help you through this.

Make sure you tell him because he will have to help more....

Sorry to have to bring the news but....

You need to degluten your kitchen completely.... as a minimum get rid of the toaster (it can't be cleaned) and all stainless pans need a real thorough scrubbing ... etc. and throw out/give away all gluten in your kitchen.

Your hubby needs to be very careful if he eats gluten outside. He really really needs to clean teeth, mouthwash and clean again before kissing... preferably he should have 2 toothbrushes (one for after gluten)...

With your reaction .... don't take chances. Can you buy 100% raw ingredients? Do you like to cook? (Even if you don't its not as hard as some people seem to think and I love cooking if not cleaning and washing up after )

You might consider going soya and dairy free as well for a time. In my opinion this doesn't need to be in the same way as gluten-free. You just need to avoid them... many people find this helps the healing process.

I'll be up front, I didn't but reading other peoples experiences I wish I had!

After 3 months or perhaps longer you should have repaired ... if you have celiac disease not a wheat allergy then you will probably be able to risk some experimentation, perhaps eat out etc. but at least for now... SAFE is better than hospital.

Hugs....

I agree just because something is natural it is not necessarily safe. However, the phenylalanine issue is stretching the justification of the point a bit - those people have a genetic mutation in which they lack an enzyme.

In any case, if you don't go crazy about supplementing glutamine and you eat a well-balanced diet, there should not be any issues.

I think the problem arises because of competitive uptake. Some amino acids beat out others when it comes to absorption. If you supplement lots of one, it can mean you give your body less of another. This issue really should be resolved if you take your supplement independently of your meals, and once again don't go overboard.

True, however it's oft as well to stress an obvious case since we are "educating" against the sort of advertisements that make rather wide and meaningless statements.

Almost everyone on here at some point will be told "but its organic wheat, it won't do you any harm". etc.

There are often threads on different supplements from trace elements to herbal often because someone has been "sold" a natural remedy on the grounds of "its natural so its safe".

"I doubt your beyond this but you would need to read on testing methodology. "

Gfp, sorry to be dense, but can you explain what this means?

richard

I already did. it seems everyone else grasped it, perhaps one of them can explain it.

As someone who had a beef tapeworm, no way would I eat raw meat! I tended to like my steaks on the rare side .... never ate any questionable food .... we can all get tapeworms even if we have not been to third world countries.

Beef tapework is relatively harmless. Unlike some other types which can migrate out of the digestive tract beef tapeworms have never been found outside the GI tracts.

They are easily treated and cause minor complications...

I think people are more squeamish than anything yet our bodies contain millions of flora and fauna, some parasitic and some symbiotic.

wow I would have pointedly asked her why she was asking... you never know what she might have said.

My husband is chinese and I am not. We had this new neighoubr move in and she saw my kids and said "oh your kids are chinese" I was HUGELY offended. I week or so later, I saw her kids who were also chinese. What I took as completley rude wasn't at all. I wonder if there is more to this story than you realise.

LOL

But good point,

The sales assistant might be wondering if she has celiac disease or perhaps her sister got diagnosed and she's wondering about the genetics or .....

You never know she could turn out to be a celiac buddy ?

That is the old Codex - www.codexalimentarius.net is very slow about updating their website.

This just was finalized, if the information is correct, in July 2008.

They are very slow .... (website and updating the actual codex)

I have found little correlation with who were good friends and not over who 'get's it' and not.

then today my DD came of a store with a choc in her hand and I said where did you get that from and she said dad bought it for me so when I asked him about it he freaked out and said I bought it for her but said she had to ask you first etc etc....then procedded to freak on me remeber this is all coming from know where...anyway proceeds to yell at me that he does not know what they can eat whatis allowed in the house .

We ALL have bad days!

Yes he's worried but he's a guy (like me)....

We guy's get all worked up when we feel we can't fix something in those we love.

You have been confused (we all start out confused) and passed it on to him. He probably thought (and quotes are here)

"Wow my wife has this figured out... I have so much on my plate supporting the family... I'll leave it to her" ....

Is this fair ??? Who cares.... its probably what he though then from his perspective you changed your mind....

My recommendation ....

Get your facts straight.... print out info you need. Get your or his parent to look after the kids for a weekend and take a break together.

Take the opportunity to get away from it but make sure he knows you will be talking about the gluten thing....

Don't make it all work and no play....

since he's freaking over finances... well make it something cheap ... but that doesn't mean not fun and not romantic.