gfp

Lol that's hilarious...

Its actually even funnier if you speak Norwegian cos the Danish translation isn't exactly word for word... which tickles my peculiar funny bone because of cultural differences from Norway and Denmark...

They actually add quite a few thank-yopu's etc. not in the Norwegian .. but I guess this might only be funny for someone who lived amongst them.... still I'm easily amused.

I always worried about the whole family they should get checked out for hepatites and liver function. I mean they are yellow or is this another Simpson family?

Nancy, you have mentioned that before. What I want to know is why you think there should be different types? I am just curious.

And I would like there to be accurate information describing the difference between coeliac, gluten intolerance (aren't they the same?) and gluten sensitive. Even I am confused about those differences.

Cathy

Im not Nancy but ...

Some celiacs have elevated IgA only, some IgG only, some both even taking into account TtG etc. not to mention nooone has differentiated the 4 types of IgG specifically regardng celiac.

Some celiacs have no biopsy or GI symptoms at all yet react to a gluten-free diet and have elevated serology for neurological problems ...some people only have DH...

The only common thing being ingestion of gluten...

This only gives 2 options... either there are mutliple diseases not just one OR celiac expresses its symptoms differently in different people.

Either we sub-class celiac so that different parts of it can be addressed (for instance B complex to deal with neuropathy) OR we call them different diseases... based on one diagnostic test which is a pretty unreliable test to start off with (biopsy).

IMHO I see no benefit telling someone with elevated serology and responding to a gluten-free diet they are not a celiac because their biopsy is negative... what should Dr.s do do, tell them to keep eating gluten so they can get a positive diagnosis and perhaps kill the patient in the meantime or give them irrepairable damage?

Given the general level of knowledge of the disease in the medical community as a whole I think we need to keep it simple... Dr's are only technicians, they just follow the manuals and patch us back up, very few are actually invoved in research and most of those that are don't see patients...

IMHO we need to keep it simple for the Dr's, for all those years they spend at med school they are not scientists ... and science and medicine are not the same.

A scientific view is you should kill the patient, that way you can have a full post-mortem and learn more, cut the intestines into little peaces... the life of the patient has no value whatsoever to science except in what extra information they provide by wether living or dying. I'm not saying a scientist shouldn't have ethics, I'm just saying they don't play a part in good science or bad science...

That is why we have MD's and very strict codes of conduct about experimentation on patients... equally many medical research scientists might argue that what could be learned letting a patient die can save thousands of patients.

Of course the reason for the ethics is non of us want to be that patient who's life saves others!

Hi Laurie,

I just want to say that I was horrified by what your doctor did. I don't have the scientific mind that others here do, but it is just unthinkable to me that your doctor would have taken it upon himself to do such a thing.

I wish he would have at least listened to your mom back then. Of course you're angry--I'm angry for you! Take care

Other than the underlined part that's how I feel.... Wow ... and trying to look at this with scientific detachment doesn't help. You must be really angry and I can't say I blame you... of course it won't do any good but I'm angry for you.

I'm still at a loss for words.... well a few choice ones come to mind regarding your childhood Dr. but non of them are really repeatable.

Welcome to the board.

Since you've had your biopsy first and it was positive....you really dont *need* bloodtests to confirm Celiac. In order for bloodtests to be accurate you need to be consuming gluten all the way through testing....this applies to the biopsy as well.

While this is perfectly true presently we never know what the future will bring as pertains to treatments and stuff...

Because of the *need* to go back on a gluten diet to be tested this could mean if some new stuff does come to light the more diverse your tests both positive and negative (so long as they are valid) is probably better than having to go through a gluten challenge later?

Who knows what the future will bring but I guess it doesn't hurt to be optimistic and think some positive stuff could happen ?

Your Dr. shouldnt have told you to go on the diet and then come back for bloodtests. The tests may be false negative since you've already begun the diet.

Yeah this is a bit stupid IMHO... quite why the couldn't have drawn the blood at the same time as the bioposy etc. then at least you can go gluten-free and start feeling better ASAP and not miss out any tests.... its water under the bridge though now and your descision is whether to go for tests in the hope they mighty actuallly be useful to you later on or not?

Some things to consider are for instance having a baby... (whether this applies to cyberprof) and noone seems to be able to decide on transferring gluten antibodies to a baby but what we do know is IgG is transferred via the placenta whereas IgA is transferred in breast milk...

So its possible that at some point people might be advised differently if they have only one raised antibody?

Im obviously not gfp

hmm you might be my alter ego

but from what I have read yes that can make a difference in healing. I would either recommend a new toaster for you separately or use these ( I havent tried them yet myself)

Open Original Shared Link

Also, your microwave could be a source of cross contamination. I have found it easiest to have my whole family be on a gluten free diet.

But you said exactly what I would have said anyway....

Moscow, you should probably look up cross contamination (CC) ... I would say IMHO sharing a toaster on a regular basis you might as well not be gluten-free... sorry but the more I learn the more paranoid I get...

Uzbekistan ... wow, you really are one for adventure...

its not many a household that has a Russian dictionary sitting around.

One of the major reasons I quit my job was because of my celiac disease. I was forever being glutened on business trips ... Its hard enough if the business trip is to Western Europe but I found the FSU and Africa nigh impossible ....

I had to eventually make a descision about my health and reluctantly decided the oil patch was not ever going to be safe...

I tried a few times getting desk jobs but unfortunately once you have experience in certain areas your forever a prime candidate for getting sent back....

I actually managed to miss all my language maintainance courses (oops) since these are also a factor in getting sent places LOL "Oh you speak the language can you go to XXX tomorrow" (can being a euphenism for would you still like a career tomorrow or not)

I also got a little tired of getting shot at or playing with landmines or having colleages kidnapped.... as I say good luck in Uzbekistan... still its probably safer than Dagestan.

ooops forgot:

For beer I would try and get a friend with contacts at the german embassay.... many of the smaller german breweries are doing gluten-free beers and it might be easier to source some through one of them...

It really does depend on the family. I cook gluten-free if we are sharing a meal, but my husband still eats gluten. He eats sandwiches everyday for lunch and I can't imagine him eating expensive gluten-free bread that doesn't taste as good. He is good about not touching things like remotes when he is eating something with his hands at home. Cost is also an issue. My pasta is much more expensive and as long as I'm not getting myself sick by him having gluten around I can't see letting him eat my expensive food when he can have cheaper, often better tasting, regular food.

As I said in my first post this is something everyone should decide for themselves....and their family is the biggest hurdle...

Sandwiches are convenient, no denying that but they are optional... gluten-free bread is expensive, its true but its really up to your husband and how much hassle he can put up with balanced against everythng else. He could take a salad or wrap to work ... millions of Mexicans manage to take tamale as lunch... Unfortunately our society is given to looking at a guy taking a salad to work as "weird" ...

Same goes for me and gluten-free pasta.... its expensive so its not something I eat much of...and I try and reserve it as a special treat.

can't see letting him eat my expensive food when he can have cheaper, often better tasting, regular food.

I can certainly see that ... and this isn't a simple wrong or right... but I think minimising the amount of special gluten-free food and just eating things you make yourself is a valid option... especially if cost is an issue.

Equally you can go anywhere between these two as well.... the less you cook anything with gluten the less chance of an accident or CC.

Anyway, I agree totally on eating at other peoples houses ... its a bit hard to explain that a single piece of flour might make you ill and people who take pride in their kitchen can get kinda offended ... the problem is they cook gluten all the time but for them its not a poision so they are far less manic about cleaning it than they would be after handling raw meat etc...

as mentioned in the biopsy there is no villi atrophy which means my villi is okay. i

No it doesn't it means the points they sampled were OK.... huge difference since they sampled less than 1/1000th of your intestine.

Secondly even if they somehow sampled your whole intestine it doesn't mean your not celiac according to some MD's definition...

If you take the genetics work of many a very large proportion of caucasians are liable to get celiac disease... yet many don't. It seems in many cases a trigger is needed? That trigger seems increasingly to be in the form of parasites or other influences, be that Lymes diseasae or h. pylori.

As I mentioned earlier h. pylori is going to give you an inflamed duodenum all by itself, thus making for angry areas for sampling but not necassarily the areas where you have villi damaged by your own antigens.

Im confused.......was that good or bad......didn't it say that a gluten free diet wont help cognitive impairment due to celiac.

No tha't why I said almost but they seem to be implying that there is a connection and also state that is is possible for someone to be celiac and have ONLY Neurological symptoms which I find progressive.

Medical researchers also have taken a new look at celiac disease, or gluten sensitivity, and say it may be "at times an exclusively neurological disease. That's kind of exciting information," Perlmutter said.

A gluten-free diet may relieve digestive or dermatologic symptoms, but celiac disease, unchecked, leads to cognitive impairment.

"Celiac disease may atrophy the brain," he said.

Also, there was no mention of my multiple hemorroids, and no mention at all of the serious reaction I had afterwards (vomiting, loss of consciousness, heart rate plummeted...they had to take me back into the clinic in a wheelchair).

Ah, well they don't mention that... but its a common side effect if you had the amnesiac mix (read horse tranquiliser) along with hallucinations and severe panick...

Either way you should do something or your insurance company will not be willing to pay for another... I'd get tough and get a report

Wow. Great article. Thanks for posting this.

Nancy

I don't want to post that great sentence...because I think its better in the context of the article... you get down and its just WOW when you think what they are almost saying ... and it so agrees with the experiences of so many of the people here (not to mention those who say but I'm not celiac because the biopsy was negative etc.)

I am the one with celiac disease and we eat simple old-fashioned gluten-free dinners, same food for the whole family.

This is what we do... my girlfriend will have gluten outside but the only gluten in the house is some cornflakes which she uses a special bowl for...which is washed seperately with paper towels.

In general if you do have gluten around sooner or later there will be an accident and if not then its tremendously complicated... you need seperate utensils, pans etc. to be really safe. Not to mention as others have said butter/preserves/mustard etc. etc.

The safer you want to be the more work and more complex... and 90% of things I cook don't have any gluten to subsitute anyway..I rarely buy gluten-free bread and pasta but usually have some gluten-free pasta about ... there are literally thousands of easy recipees that don't call for any gluten at all and thousands more where its easy to use something else...

Its really simple IMHO just to choose different things to cook and then everyone eats the same and the risk is the absolute minimum.

Having said all that take each thing as it comes... for instance of on occaision my girlfreidn wants a pizza I do as CarlaB and buy one in and she eates it on a tray... we bag the box and any leftovers and throw it out immediately and wash down the tray and stainless steel knive for cutting it.

I think the best "rule" is if you do something regualrly you get slack and its easy to be distracted and stir with the wrong spoon etc. cooking is for me one of those things I do out of habit (that is I don't have to think too hard and its actually relaxing for me) but if its just a special occiasion once in a while you take greater care and so less chance of contamination...

Also if I do have to cook with anything with gluten for others I don't enjoy it, I'm continually on edge... so in my own home I just don't do it..

20 quid is quid still a term that is used - and how much is it???

I'll tell you when you tell me something of use ....

quid pro pro ?

oops sorry....

its just the vernacular for a pound and I don't have a pound sign on my present keyboard

I'm not sure about feta, or the balsamic vinegar you mentioned. I don't use it so never checked on it. I do know that malt vinegar has gluten. Maybe someone else will be able to verify those for you.

Feta should be OK so long as its not low-fat etc. Basalmic vinegar is OK if its REAL de modena BUT many "basalmic" type vinegars also have coloring and this can contain gluten.

I emailed my celaic friend who visits Moscow frequently, her husband is a Muscovite ... I linked to this thread so hopefully when she has a minute she may be able to help with specifics and stores etc.

Either way you made me pick up my Russian dictionary and brush off the dust... LOL, I certainly needed a bit of practice.

Okay, got a question:

Over the past 5 years I have gone from a 14 pant size to a 6 size and a loss of 20 lbs. That is not much as a concern as the muscle atrophy. My limbs are like toothpicks. My arms shake and I can squat down, but have noticeable difficulty getting back up. I despreately need to work out to build back my muscle strenth, and I am still seeking an appetite and motivation for both.

Could Omeprazole (generic for Prilosec) be desolving my muscles?

Steve, if you post, dumb down your answer for the simple minded, please.

Lisa

Erm will look into the degeneration part but in general one of the side effects is mucle fatigue and pain...

Of course we thing of muscles on the outside but we of course have lots inside, the heart is a huge muscle etc. we use a muscle to expand out lungs etc. and we have lots between our ribs... etc. etc.

Anyway I was on Inexium (one type of omneparazole) ... they worked REALLY well for what they were meant to do but boy did I suffer side effects... Tight neck, back etc. but also something I didn't realise... I actually thought I had a problem in my lungs (I was a smoker back then so you can guess what I was scared of) The GP laughed and said she'd send me for an xray anyway but she thought it was muscle related... I wasn't very convinced, it felt very deep... like right inside me and she changed my Rx to the other type of omneparazole without saying why..?

So the chest Xray was clear and I still wondered about the muscle thing... and looked up omneparazole on the internet, read the product sheet, side effects etc. Anyway, the other type don't seem to affect me much and work just as well plus since I lost weight I don't suffer anything like I did... anyway, at one point I ran out of the new omneparazole and still had the Inexium left.. so started finishing them off... what.. pain in chest and middle of my back but really deep and doesn't feel like it can be muscle... stopped them and got the other type (all freakishly expensive but the generic are cheaper) ...

So I'm not saying it is this but it would be a cheap and simple solution and it taught me internal muscle stuff feels mighty weird like a knot inside you that pains you when you bend or stuff.

Anyway, I'd mention it to your GP and suggest changing the type of omneparazole... my mum reacts the opposte way to me... (so she got my old Inexium)

I am brand new to the diagnosis and it is more like a best guess at the moment. We have a 19 month old who has had all the testing which has been negative yet symptoms persist. Our natropath is reccommending at least 6 months gluten free. I am wondering what works best... if our whole family goes gluten free or just the one with "symptoms." What has worked for other families? We are a family of 5 (2 adults and 3 kids ages 7, 4 and 19 mo.) Any suggestions? Also, any things to do to get started? Help is appreciated!

In every single sense except getting the kids or hubby to go along with it its simpler and safer for the whole family to be gluten-free....

Thank you for the posts.

Can't a hiatal hernia push other organs out of place (mine is large)

Is there any danger in NOT dealing with this? We are still arguing with the hospital about the cost of my last executive panel.

This is an expensive disease and side effects.

Well you still don't know what your dealing with, honestly it could be muscle related especially with omneparazole...

But I really do think you should get it checked out to be safe....

As for the HH I never had mine surgically repaired but loosing a lot of weight really made a huge difference.

Not very common in California I imagine ....whereas Steve is awash in gay Paris

Hey, can't a guy quote Oscar Wilde without that

LOL

Anyway... I got two spare monitors neither of which is much good but servicable for checking here... If you can think of anyway to get them to you from either Lancs (will be there next week) or Paris you're more than welcome... but you could probably pick a cheapo one up from ebay for 20 quid...

Thanks for the reply - it does make me feel a little less....doing it all alone. So this brain fog happens to other people? For 5 weeks? Would there be days when i feel clearer than others? When I was first diagnosed and I stopped eating wheat I immediately felt better, but then I went back to the way it was before....but I'm pretty sure I've been wheat free. Is it an up and down thing? Some days you're feeling better and some days you don't? Ask for a glutin-free menu in Moscow. People think I'm making it up! Nancy - what about oats. There are these oatcakes that say guaranteed wheat free...but oats? Buckwheat? Something we have a lot of in Russia, but is it OK? Feta cheese? Any ideas? What about medicines? I'm constantly e-mailing companies but most of the time I don't get anything back. Sorry guys for all the questions but I've been driving people up the wall over here and this is the first time in weeks that I'm getting some answers.

Chance is any ham imported from the EU will contain wheat derived glucose, dextrines or other agents used to make it "slice easily"...

Gelatin is what is left when you boil skin, cartilidge or bones and let it cool

Buckwheat is fine... its no relation to wheat....

I have a celiac friend who visits Moscow regularly...

If you are really desperate I can also get some small stuff taken over for you... I have lots of ex-colleages in Moscow and they are in Paris reasonably frequently.

Can I suggest you search the forum for cross contamination (usually just abbreviated to CC) and hidden gluten.

пшеница is wheat

рожь is rye

ячмень is barley

but you need to also look out for

крахмал starch etc. or just plain мука (flour)

erm sorry but I don't have a cyrillic keyboard so typing this out is a pain ...

i've never heard of such a thing, but it might be a good idea to check into things a little more before taking your doctor's word about it-----i was a teenager during those years and we had never even heard about HIV back then, so it may not necessarily be the same thing.

I don't think thats what her present MD meant... only that the technique was later tried on HIV patients...

laurie@xtreme

Any thoughts on this?

Wow lots but how to articulate them?

I'm rarely stuck for words, indeed I would often be better saying nothing but this is one of those rare occaisions I want to say something and am truly lost for words...

I can't begin to imagine how you feel about this....

I don't know about Oscar Wilde, but I got it.

I have nothing to declare but my genius

Supposedly said by Oscar Wilde at Customs Control in New York, 1882.

but I guess if asked about stubborness he might have said "I refuse to acknowledge my stuborness"

especially fabulous brilliant tails of adventures in far flung lands !!!)

Hmm must get round to writing up my australia/vietnam trip!

You referred to it before as "my stubborness", which is even crazier.

Noglugirl, sorry, I don't know anything about Lupus.

It was an allusion to Oscar Wilde and I thought maybe some people didn't get it...

The egg intolerance isn't necassarily eggs... albumin is the simplest/tiniest protein anyway.. and its exceptionally easy for your body to recreate when you're following a diet with unbalanced amino acids... yuor liver naturally makes a slightly different albumin protein anyway which makes up a large part of the protein of blood plasma.

I would still recommend you get a amino acid balance test ... its another test but you've already been subjected to loads ?

As suggested you might cycle soy in again but IMHO you are risking it developing into a further intolerance.

If this happens your going to truly find it hard to eat... if you provoke a stronger intolerance you will have to treat it every bit as seriously as gluten and its going to cut out a whole load of other foods (and medicines) which might contain soy or be contaminated...

Is it possible you are not as stubborn as you think you are??

(erm that's meant to be irony)

I was not aware it was creating a misconception of anti-scientificness.

Erm ... that's the whole point of misconceptions ! (again irony )

Seriously though that's probably a better way of saying what I was trying to say but it really is the point, if you were aware of thinking what people might ASSUME it wouldn't really be a misconception ..???

Its like if you overhear part of a conversation and completely miss the point of it... I suppose. Its not the fault of the people who were having the conversation you overheard .. but you still assume based on your fragment of what you heard.

In this case my fragment was the title...

Anyway, these moles are not being trained very well. Even with the special large print books and it suddenly hit me I had French moles and was writing in English so obviously they didn't understand a word ...

Meanwhile the recycling piles of loo-roll are growing... keeping with my environmental principles I figured we could just get some dung beetles in to recycle them but the damned moles ate them all. The ringleader has been caught though and grounded!