gfp

My IgG came back positive last week.

I'm part Irish and part Spanish (probably Mayan as well but not sure). I say I probably have about 25% Irish from my mother's side and 75% Spanish from my father's side.

Carol

Rachel .... now there is two of us. I'm also part Spanish

Most people from the Southern counties of Ireland are also part Spanish if that means anything.

The fact is it doesn't mean anything because most Irish people also have scandanavian genes as well, not to mention that genetically the Irish and North African Berbers are also genetically very close.

Just to be clear, there is no such race as Italian or French or Swiss or German...

Perhaps Italian might be easiest to explain.

Firstly Italy did not exist ever as a country until 1861... but we are already getting way ahead of ourselves.

Early Italian settlers in the paleolithic could be said to be the first "Italians" ... one group were the Atlantans (the old name for ONE of the peoples of Euboea) an Ionic people. (and already very mixed up)

Evidence points to around the 8thC B.C. for the ionic colonisation of what is now Italy.

About the same time as Pygmalion was King of Tyre, shoshenk III was King of Egypt (pre pharonic era) and Assyria conquered Damascus and Samaria both eventually united under Nabkunasser (spell it as you will)

Traditionally the date is 734 BC two years after Hoshea became King of Isreal. and 4 years before he was defeated by Tiglath-Pileser III of Assyria.

Meanwhile, further North ... the Villanovan culture was being superceded by the Etruscans and Romulus and Remus had founded Rome.

Meanwhile the Spartans had already founded Tarus (now Taranto) ... and the list goes on and on.

Under the Roman republic a certain amount of mixing was obviously going on... and genetically a huge amount of influx from the whole Roman empire. Much of southern Italy was still Greek in culture and even language, Naples was using Greek up to Napoleonic times. Spanish influence was also huge... and at this time the Spanish were a mainly Celtic race with the addition of phoenecian and catheginian influence, indeed prior to the Punic wars the Ebro maked the boundary between Carthaginian and Roman and the Cartheginins themselves having settled Carthage from phoenecia but also including tyre and others.

Post and late Empire ... Constantine was at least 50% Serbian, his mother being an inkeepers daughter from modern Niš. The genetics of his father Flavius Valerius Constantius .. being the matter of a reasonable amount of historical dispute ...

Common figures (and the Romans were very thorough at figures) show something like 40% of the population of the Roman "Italy" were slaves and of these over 90% would be non-Roman slaves. Equally many or most citizens were not Roman or even genetically from Italy. Most people may have heard of a Roman citizen called Saul for instance. This wasn't an odd event... any free man born in a colony was a citizen. A colony however was NOT just somewhere Rome ruled over, it was a special status.. colonies paid less tax and their citizens were according Roman citizenship.

.. if this wasn't enough the post Roman period brought an equal amount of genetic influx. The rather obvious germanic vandals and gothic tribes from Scandanavia in the first instance followed by Normans and Lombards (both again of Scandanavian origin) while meanwhile the city states of Genoa, Venice, Pisa and Florence were trading between the near east and Northern Europe, fighting amongst themselves and occaisionally against the Moors. Each progressive wave of moors brought forwards immigrants from the former Eastern Empire... from what is now Turkey, Cyprus and Greece. Each had a distinct and different dialect ... no closer to Modern Italian than catalunian or modern French.

Down south ... from 1494 the French king Charles VIII opened a series of invasions quickly added to by the Spanish until the treaty of Cateau-Cambresis in 1559 recognised Spain's soverenty over the Kingdom of Naples.

.. right up to the Peace of Utrecht (1713) ... when the Hapsburgs took power of State of Milan and the Kingdom of Naples leaving the centre of Italy to stagnate under the intellectual opression of Papal control.

Napoleon destroyed the Republic of Venice in 1799 ... and restored much of Italy to a non sectarian pro-Italian nationalist state. (the previous 200 yrs being vassal states of Spain and Austria) This is the first real time that Italy existed as an entity....

Every single European country (with the exception of Iceland if we wish to be inclusive) is every bit as mixed up.

Pick a country .. and follow its history ...pick out genetics and look.

I say do it, just to put your mind at ease that you have everything else ruled out. As long as you have a doctor who is willing to accept celiac as a diagnosis even without a positive biopsy, then there is no harm in it.

More and more doctors are starting to realize that the biopsy is no longer the "gold standard" of diagnosis. It is such a hit and miss situation as to whether they happen to hit a damaged spot or an undamaged spot. It's kind of like this: Imagine someone having a spotty rash on their back. Now the doctor is blindfolded and is supposed to take a biopsy of the back. It basically is hit or miss as to whether he hits the rash part or not. If he happens to miss the rash part, the biopsy would come back negative, does that mean the poor guy doesn't have a rash on his back? Of course not. It's the same with the intestinal biopsy. The doctors are still basically blindfolded, as they truly can't tell with the naked eye and their little camera whether there are villi there or not. They may hit an affected area, they may not......

Since they drug you so much that you basically don't remember anything anyway, I say go for it and put your mind at ease.........

Hugs.

Karen

Sorry, I missed taking in the part about its on Friday....

I am still wondering what eating gluten between now and Friday is going to do for the biopsy?

Taking the excellent example of Karen if it reacts at all it is more like having two spots on your back and a blindfolded Dr.

I was under the impression that Vodka, and and other distilled liquors were gluten-free. Certainly this website lists them as such:

https://www.celiac.com/st_prod.html?p_prodid=271

Here's another source that touts distilled liquors as gluten-free:

"The American Dietetic Association (ADA) has published an updated and revised edition (6th) of the "Manual of Clinical Dietetics" that offers an international perspective on the dietary treatment of many diseases. The chapter on celiac disease, written by a team of dietitians, includes diet guidelines that are consistent with international standards. Therefore the chapter's list of safe foods includes buckwheat, quinoa, millet, amaranth, teff, distilled vinegar and distilled alcoholic beverages such as rum, gin, whiskey, and vodka."

Open Original Shared Link

It's certainly possible that the alcohol itself or something else in the vodka could exacerbate an already irritated digestive tract. But vodka, even if made from grains, should be gluten-free. The distillation process should leave the gluten behind.

Patrick

Patrick, sorry I don't wan't to seem rude but we covered this one to death and back more than once.

The fact is some of us do get sick from grain distilled spirits ... and not from pure rum or tequila.

It took me a long time to accept this, not only am I a scientist but I have worked extensively doing mathematical modelling of fractionation and distillation processes. On one hand the obvious answer is gluten and even gliadins should not appear inthe distillate .. on the other the evidence that quite a few of us react....

I had to make myself ill several times before I accepted this .... but then thinking back I have run hundreds of models for distillation, specifically in a multiphase eutectic environment and one thing I know is the distillate is never exactly what you predict. Tiny temperature and pressure differences can change it significantly because all of the mixed compenents affect every other component and the mash for vodka for instance contains several hundred or thousand components, themselves all completly variable according to the brewing process...

One way to view this is take 50 wines, all made from the same grapes.. different years perhaps and different soils and then stored differently.

Even the same wine from the same mash put into two different sized (and even shaped) bottles can be completely different.

The bottom line is I think our sensitivities are different... some of us are pretty damned sure we react, the only test i haven't done is a completely blind test where someone else knows if I'm drinking vodka or rum heavily disguised ... and doesn't tell me to rulke out any psychological influence.

Whisky is particulary debateable, they add back a part of the mash or add chemicals... how much depends on the quality of the whisky... several Cognac's use coloring derived from unspecificed caramel color which in Europe is often from wheat.

The best I can say is "suck it and see".

Its only a decade or so ago that for instance polititians were EATING raw DDT to prove its safety...

EDITS:

What I came to the thread to add is that one way to be a little safer on labels is to find the manufacturers who list gluten on any products and also if they have may contain "others" .. for instance celery ...

I feel more confident when something actually says "May contain celery" because I know they at least considered allergens.

This doesn't add up.

He is doing a biopsy "to rule out any other issues."

other than celiac disease... why would you need to be eating gluten for this?

I'm not really concerned about the biopsy, I'm concerned about you eating gluten in the run up to a biopsy.

It sounds like your blood work is positive and he has already said you will need to be gluten-free afterwards regardless ...so why would you need to eat gluten for a biopsy that is "to rule out any other issues"?

How much damage does he want to see?

On a global level... yeah we get one extra case of proving that blood tests are conclusive but on a personal level why would you be the guinea pig?

I'm no enterologist but I would imagine that looking for other issues would be a lot easier after removing the source of the irritation ...

Just as a example: If your car had been leaking oil and you get it fixed and have the engine steam cleaned and take it to the mechanic I wouldn't expect him to say "well lets block the crankshaft emission filter again so its sucks oil out and give it a spin then look under the oil for other problems...." I would more expect him to say, well now the engine is clean of oil and we can see what we are doing lets check nothing else is damaged or nothing else was also causing the oil leak...."

Scott, I'm fine with the rules... I am just clarifying them.

Hello gfp,

Just to clarify--we don't have these rules to protect ourselves against competition, but have them to enhance our user's experience by not exposing them to ads that are disguised (or in many cases not disguised at all) as posts. Also, we have no rules against posting links to other sites on this board--our members do this all the time--the rules here only apply to those who promote "your own business, Web site or products," with a huge emphasis on "your own." With regard to your site, we'd prefer to see other people post a link to it rather than you--that way your intent won't be misconstrued.

Totally sensible, I mean that's the way people for instance get elected to public office. By which I mean it provides an automatic review process if you can't nominate yourself...

There are hundreds of ways to manage a website and non of them are particularly better ...

I'm presuming that for instance it wouldn't or shouldn't be a problem to use a pm instead of a public post if one has specific information relating to a question which is answered on your own website and that if that user chooses they can then share this with a thread?

From a personal POV ..(because I'm hesitating to give examples of other local sites). the main reason I would want to link to my website is to answer a question of anyone who is visiting Paris and I would think that is the same for people with links to their local sites ....

The only other reason is I obviously know the content of my site and where to find something so it can be easier to just link something... I can't think of any case when this would not have been already covered on here, probably 100 times ... but it does sometimes seem easier to do that.

The only last real question is really "what is your own" .. one day I hope someone will actually take some interest in helping out with "my" site and I won't have to submit every article, link and resto recommendation myself....

In this I have been particularly careful not to "steal" names of resto's from here. (even though it was suggested) ... I don't do that... all my resto recommendations are either submitted to me by email (tedious since I then have to reply and make sure the person doesn't mind me adding their email and then post them) , directly through news items (about 2 people ever) or on the forum (2-3) ....

(I'm hesitiating to name any other region or city sites ... rather due to accidentally dragging jcc into a discussion when I mean to use it as an example. )

Anyway.... I'm in my gluten induced ADHD and drifting.....

So the question is really if someone was directed here from my site and became a member here would that prohibit them from posting back... especially if (and I hope I find someone before I just give up and leave the thing to die) they are also an admin of the site?

I respectfully disagree with this information. Walking is a fantastic way to better health (and has more benefits than just burning calories.) Almost everyone can do it, it's easier on your joints than running or jogging, and it costs no money. Simply choosing to walk instead of driving (everyday) can make a significant difference in overall health and acheiving ideal weight.

The "walking at moderate speed" example from the linked website is an example of walking leisurely (without purpose)...a good, brisk walk burns up more than 130 calories, and way more calories than driving a car. Here are some comparisons between walking, jogging and running from the same website you linked: Open Original Shared Link

Personally, I was way fitter when I walked everywhere during my day (lived in a pedestrian friendly city & neighbourhood.) Now that I live in a suburb where I must rely on driving, I really miss the time I spent walking and really miss the health benefits. I do not enjoy making time to go to the gym or swimming pool...it feels like a really inefficient use of my time...I'd much rather take a good walk to run errands.

Michelle

I'm not saying walking is bad, quite the inverse. I rather think as I said that 30 mins working a day should be done by everyone! (I actually said that somewhere in the post), I think I said as an absolute minimum to having an active retirement.

But if someone is looking to lose some weight there are more efficient ways (and these also have additional benefits) but not to the exclusion of walking 30 mins a day....

Square dancing is actually looking quite attractive too:D

gfp, if it were that a poster came on, had no commercial interest, and posted that this certain guru healed someone of celiac, I would agree with you that it should have been left. The Christian post that I remember was by the person who was "healed" and was not advertising any specific faith healer. I believe that is the difference.

I think they may have mentioned a specific one but ... its really not worth looking that far back!

I really have to agree with Ursula and say I really hope they are healed... or back on a gluten-free diet...

I don't have any problem either of them saying prayer or meditation helps... so long as they don't go advocating that someone who is celiac stops a gluten-free diet or a diabetic should stop using insulin....

I am a very faithful practicing Catholic. I have a wide circle of friends (not including all of you, that obviously makes it wider!) across the country. I live in a relatively large city. Thus, not all my friends share my faith, so I adjust my conversation accordingly. Living as a witness to what I believe is in living it, not advertising it.

That being said, when you're used to being in a smaller community with like-minded individuals, as I once was myself, it's easy to forget that everyone you are talking to in another place, like this board, are not all of your like mind (I don't necessarily mean a small city, or a sheltered environment, it could be someone that is surrounded perhaps by Church friends most of the time). I think this is more the context that the Christians who talk about their faith are coming from. That is why it comes across as assuming that all are Christian, because that is what they're used to, especially when there are good people like you who might come across that way to them.

I hope you take this how I mean it ... I'm almost afraid to hit "add reply"

Carla, that is the best explanation EVER.... seriously no joking!

The thing is like you I have a very diverse set of friends (outside of here too) from practicing bhuddists and hindu's to muslims, jews and christians to people with personal beleifs or non.

One develops tact over expressing faith as fact... especially when part of your faith is directly against someone elses! I'm simply not used to people expressing faith as fact... I know people can say prayer heals and believe it but equally many practicing Hindu's and bhuddists say the same for meditation...

Jcc and gfp, you confuse me. I went into your profiles, and you don't have a link to your sites there. There is a spot to list your homepage in your profile, and that is where I would expect to find the links to your sites. The rules about not linking to a business site or whatever site are meant for your signature, or in your posts, as far as I am concerned. I have a link to my poetry site in my profile. I wouldn't link to it in my signature, because it is irrelevant to celiac disease, and therefore has no place in my signature.

Ursula.... its really simple, I read the rule literally. I don't know about Cara but you know me well enough to know I read things like that as literal

When I joined I clicked on the rules... I read it and reread it (as I do for most things) and determined if said Web site... very specifically not business website.

Most fori I inhabit have no such rule at all and people do link to poetry sites, music or even Church activities in their sig... One of my best friends on another site links to his charity work with kids, another to a cancer fund etc. etc. I actually have my gluten free site in my sig.. to raise awareness

When I read rule #2 it specifically says Web site. I was left wondering that in the context it didn't mean Commercial but it says

Do not promote your own business, Web site or products.

That is why it is not in my profile.

which happens to be "healing" for money

In that case I have no problem...

We do not ONLY enforce our rules against potential competitors (although that too is becoming an increasing problem on this board, as there are now hundreds of celiac disease and gluten-free companies out there with Web sites who want to use our forum as a means of self-promotion)

I really don't thionk you have anything to worry about competition wise.

The point is I don't have a prob with advertising, someone has to pay for the site somehow...

If I go to a information site like this I will even click on a few ads to generate income... that isn't really what I am saying.

The rules are very simple and easy to understand for a reason--most people will not take the time to read lawyer-like complex rules that are very detailed and specific which give detailed examples of exactly what is and is not allowed here. Because our rules are very basic they are open to a more broad interpretation, and that is the job of the moderators, who, I believe do an excellent job in enforcing them.

The real issue is I don't think with your large and active user base you have anything to worry about in competition! However I really do believe that local area support boards have something different to offer ...

Having just got back from Italy I believe this even more strongly because the regional groups actually go round and certify places, help with menu's and give out stickers etc.

This is something that is IMHO completely compatible and actually in synergy with this board... indeed I would encourage people to look here for all non regional issues ... (my links need updating, the present one I have one for Brian talk... again a different emphasis but perhaps closer ... but I really believe, we are all celiacs... and if we ever want anything to change any quicker than a snails pace we need to coordinate regionally, country wide and globally.

There are a lot of individual groups ... in the US and worldwide that would use this place as the clearing house and exchange of ideas... and place to discuss global issues we all face.

As you can see, there is a proper way to advertise on our site, and it is the advertisers here who fund the board and make it possible for everyone to use.

I don't think we are comparing oranges and oranges....

Many of the specific local sites don't have any advertising and are 90% vistited only by residents or visitors, for my part I am more interested in giving free advertising to resto's and places willing to cater and make changes for gluten-free. They are very specific local resto's ... getting them to actually put gluten-free items on the menu for free advertising is hard enough, let alone asking them to pay and the majority of local sites seem the same.

The rules seem vague enough... Ursula is asking why I don't have a link in my profile and my interpretation after reading your explanation still seems to say this is not allowed (but the mods might ignore it)?

Just to be clear... I'm not really worried about MY website in this context, I really see my website as one of hundreds of regional websites. I don't want it to be visited by people who just click a link but by people who are living or visiting Paris. I don't mind curious people having a look, I'm not saying that and in all honesty I don't want it to be my website... I would rather be one of a few people maintaining it.. indeed that's what my front page says! I don't make a cent from the site (nor intend to) , its purely my contribution to people who need info on gluten-free in Paris... i host it myself and the only thing I do is promote my own business on the site in return (and its not even linked at the moment!) and if others want to help out I would be more than happy to drop this too.

However what I would like to see is some coordination of where to find regional or city specific sites.... and I really think if NON PROFIT regional sites were allowed links they would reciprocate and generate a few clicks for you. I don't know that but its just my 2c!

Cara,

Sorry you feel kind of stuck in the middle!

Yep sorry, it was just an example.

I bookmarked it now so I don't need to look for it in your posts anyway.

I think you did the right thing. I saw this post yesterday and it made me uncomfortable because I thought it could potentially cause people to gluten themselves and become ill.

How else would they test to see if they were cured other than to eat gluten? Some people who desperately do not want to have this disease might just be tempted.

Hope I don´t sound condescending, once I started writing this I realised that I´m making a mess of what I´m trying to say.

I don't disagree.... what I do disagree is that threads about praying cured my celiac are left so long as it is to a Christian god and encouraging others to do the same.

Thanks for the nice things you've said about my website, gfp, and I think you are using it just as an example,

I am ... but it was the one that rewoke the beast so to speak....

When I first came here I reads the rules.. the rules say "Do not promote your own business, Web site or products"

since I found this on a google search (well I'd seen it before but the ads put me off) specifically asking about Gluten Free in Paris I thought I'd register and post and hopefully someone would see it before it was deleted and I was banned.

Then hanging about a bit you notice lots of people giving links to their websites and nothing really happening unless its to a non christian site. When I noticed you posting and saw your website (which I stand by my praise for) I wondered why you hadn't posted it... or more often, I mean I can find an authoritve answer to 7/10 questions on your site. Indeed I kept trying to find it by looking at your profile or posts when ever I needed to check something.....

Then it occured to me that you too had read the rules....

My first impression of this site were ads, ads and more ads and combined with rule #2 this makes me feel like posting a link to your own site is not tolerated... but the evidence is many people do.

Many ppl on this site have thier personal, non-business sites in thier sig, and I do not think that vilolates #2. Appereantly the powers that be here agree since I not heard of anyones personal pages (like mine) being censored. If I thought, or if Scott told me, that it was in violation I would remvoe it. But that would be an awfull silly rule, IMO. smile.gif

I agree but your perspective is from a long standing membership....I don't think this is how rule #2 reads to newer members? I agree its silly, as I already said if it said commercial or business site that would be quite understandable ....

sorry gotta go....

You're right, that is incredible--and horrible.

So what can we do to counteract this idiocy?

We could start by using the talkback button?

but the problem is overall ...

Fever is a normal immune response.

Antibodies take time to create and hence the body will try and combat the invador by raising the temperature first.

Since humans have a very low body temp compared to most mammals and beasts we can get a virus or bacteria from its not a very effective method.

wow the more i read about these pills, the less i want to take them, they can kill you if you quit them to fast wtf

So can water!

This is just my guess, but I think that wheat and barley in bible times were made into bread through a sourdough/fermentation process - they certainly didn't just go buy yeast at the store. There is evidence that the fermentation process does something to the gluten that makes it easier to digest or just plain breaks it down. So, people who consumed all their grains in a sourdough type bread wouldn't be getting as much gluten as the average 20th/21st century person and thus less gluten problems.

There is ample evidence that baking bread was little different in blblical times to today (At least for an organic bakery). Indeed it is a pretty standard archaelogical metric. For instance much of Herculaneum is still buried but its population is known from censi and hence it is known that at least two more bakeries must exist.

There is also diagnosis of celiac disease in biblical times. Or at least from Aretaeus of Cappadocia in around 150AD.

The records also show that the consumption of bread was even higher than today... a legionaire was alloted 2 lbs bread per day. These figures are well documented ....

Quality and price of bread varied greatly... The province of Syria (including the 'biblical area') had very low prices compared to Italy. Rome about 32 denari/moduli vs 10-12 for Palestine. (about 1AD)

1 moduli = 18-20 1lb loaves.

gfp, I saw the post you mentioned, and if I recall correctly, some outsider came in here with nothing on his mind but promoting some quackery. Somebody reported it (rightly so), and I suppose Scott removed it. Since this is Scott's site, he has the right to make the rules, and to enforce them. And I agree that this particular post needed to be removed, as have been others like it.

If a Christian faith healer (and most of them are liars and fakes as well, as far as I am concerned) comes here, promoting his 'business', he'd get the same treatment. This is a place for people with celiac disease, to help each other, not for people to come and try to get business.

In my opinion a topic telling people that "God cured my celiac" is equally in need of removal. Encouraging people to stop a gluten-free diet and pray god cures them is from my point of view more dangerous.

On the other hand, if somebody asks for prayer (or good vibes or whatever), that is totally different. Or someone will say they'll pray for somebody. That is just supporting each other. Besides, there have been quite a few studies done that proved that prayer works, even for people who don't believe, or who don't even know they're being prayed for!

_______________________________________________________________________________________

Are you confusing your profile with your signature? Everybody has the right and the opportunity to post a link to their own website in their profile. By clicking on the person's name in a post (or by going to the member's list) you can access those personal sites.

We're not supposed to link to your home sites in our signature. I guess Scott is making an exception for Nini, as she has links to the newbie survival kit there.

In general, most links people put into their posts are relevant to celiac disease (unless it's the chat forum), or just link to personal photos. If everybody here would start promoting their businesses, soon this site would cease being helpful to us in dealing with celiac disease.

Im just quoting the rules....

Open Original Shared Link

#2 # Do not promote your own business, Web site or products.

I can see why not businesses and I can see why not products. If it said commercial or for profit or with advertsing website I could see that but I can't see why it says "Web site" ....

I don't see what is so offensive about for instance Open Original Shared Link

Its not my website so according to the rules i can promote it but jcc cannot.... my website and those of other local ones ... I don't see why promoting "Gluten Free in Wisconsin" is a bad thing... if i was going to Wisconsin I would want to find this site.

These are not competition... Cara is very specific about the type of thing she posts, my site is very specific to Paris and other's are also very specific.

gfp, what article are you quoting? Can you provide a link?

ooops....

Open Original Shared Link

Sorry this stuff gets me hopping mad. I pretty much knew how this would spread....

Its like good news travels fast..bad news faster still. but "medical research gets cited, medical research saving medicare money gets mis-cited often".

and sooner or later you will be sat oppostite someone and they will be saying how they read that treating DS kids is a waste of money.... or in this case testing is a waste of money because it doesn't stop them developing symptoms... and the idiot is unlikely to know what celiac disease is or actually know a DS person or .....

If the article had instead said that "Testing is not enough, DS kids should be tested frequently and state school provide them a special diet" then it would be mis-cited differently because this costs money.

this is the standard practise of GI doctors in North America according to my reading (medical journal articles--if you're interested in a citation, would be happy to provide it)

I'm not saying it is right . . . I was just guessing what my GI doctor would do if the biopsy is negative.

Yes I realise this, I'm just saying I can give you plenty of citations for the inverse etc. but that's not really what I'm saying.

There are GI Dr.s and there are doctors specifically researching celiac disease.

Nearly all the Dr.s actually and specifically researching celiac disease are not advocating biopsy and certainly not as a diagnostic.

Yes, you have old school "this is what I learned in med school" GP's and GI's... and a certian momentum to overcome but its changing... every year. Today your certificate might be a better cert than blood tests but I doubt that will be valid in 2 years ....

Blood testing is and has developed much faster in the last few years than biopsy which is still with minor improvements still the same procedure as the 50's....

I can't see sigs, I turned them off ..I could turn them on and read then submit but it would be easier to post them.

What Ursula and I are saying is if you have been gluten-free mostly over 2 years the chance of the biopsy being +ve is pretty small. You will then have a definate NO for Dr's who still regard the biopsy as the golden test and be no nearer.

The other option is a deliberate and prolonged gluten challenge: to try and ensure accuracy but this involves deliberatly poisioning yourself and deliberatly damaging a important organ for a certificate that is decreasing in "value" ....

Considering there is always a chance that THIS glutening will be the one that doesn't repair fully (and by definition you are trying to damage it as much as possible for the test) this is not something to be taken lightly.

Given what you said about cost the ideal situation is not an option... if you had a few hundred loonies sitting idle you could get a biopsy and then if neg carry on the challenge, test again every 3-4 weeks until it is just good enough to be positive... BUT your provincial healthcare is not going to pay for this... if you get one you are going to have to make it count .... and the question is how sick will you make yourself before getting the biopsy...

Just because you feel really bad after say a month doesn't mean it will be detectable on biopsy... and a negative biopsy is not going to help you.. you can choose to eat stuff with a trace of gluten perhaps but for how long? How far would you let your health slip ??? and if you then (perhaps in 5 years) think you have need for anoither test will your province pay?

desided to switch the chips in my diet for something else, figured hmm grapes are good and good for you well i guess iwas wrong.. i cant eat grapes everytime i do my stomic goes into major pain

A lot of anything isn't usually good!

When I ws a kid I used to love fresh peas from the pods (well I still do) and my mom would buy a pound at market and an hour later my stomach would be ... well you get the picture !

Fruits are good but they also pass through you.... I was eating loads at one point in a not too disimilar situation to you and it took someone else to point out ... of course you have D and stuff.. anyone would eating that amount of fruit ....

Worrying about stuff is a surefire way to loose lots of weight and also give you D and stomach probs.

Celiac is a real problem because the symptoms are very similar to lots of serious stuff... before I was diagnosed I had lost an unhealthy amount of weight .(and I was starting off on the lower side of obese).. was convinced I had stomach cancer or something.... ... worry more, loose more weight, more pain....

Grrr, this feels hellish. I have absolutely no interest in smoking again, but there are all sorts of emotional things coming up that the smoking was kind of holding at bay these past few months. On the other hand, I still look better than I ever have.

Try personifying that "little devil" .. learn to detest it ... but don't diefy it. All it is is a nagger... it nags at you and hopes to break down your resolve. It has it in for you.... but each and every day you ignore it it becomes weaker, its not a deity, its a parasite, just one you have created but it took years to grow and it will take a week or month to really kill it.

I noticed a post this morning which has been deleted or dissapeared.

The post related to some guru such and such site....

Given people are allowed to post whatever they see fit about their Christian religious beliefs perhaps the board guidelines should be more specific.

In particualr I have seen threads saying "such and such a evangelical faith healer cured celiac/cancer" and these are allowed but someone else who is not Xtian is not...??

So far as I can see the guidlines state:

Registration for the board is not the same as for Celiac.com. You must register on the board to be able to use the board or the calendar. Note that if your browser or firewall is set to not accept all cookies you may not be able to post on the boards.

Below are the basic rules of the board. Generally speaking users who break these rules will get two warnings, and if there is a third rule violation they will be banned from the boards. Serious board violations can result in an immediate ban. The rules are as follows:

1. Do not be abusive or otherwise out of line towards other board members. Show respect for each board member, no matter what you think of their views. This is not a place to quarrel.

2. Do not promote your own business, Web site or products.

3. Do not spam the boards (i.e., post the same thing in multiple topics or areas of the board to bring more attention to your post).

Unless this was the personal website if the particular person who posted then I don't see any contravention.

Inparticular #2 is a stupid rule anyway.... as it stands....

Carla (jcc) has a great site and resource, probably the best collection anywhere I have ever seen completely without any advertising or commercial interest whatsoever. but she is not allowed to post a link but if she pm's someone then that other person can post a link?

Also it seems hundreds of people post their website in their profile and its posted on every post. I guess you can turn off seeing sigs... but why explicitly let people post to their website if its explicitly banned.

Meanwhile I can promote any commercial website (so long as its not mine)

This all seems very inconsitent to me.

gfp - thanks. I will ease out of the friendship which will be easy because my busiest time of year with work is about to start. I don't want to burn any bridges in case my friend does one day decides to get serious about her health. I'm glad to hear about your friend - that is great news.

The thing is I didn't try to explain .... I agree with tarnalberry on honesty but unless you are ready for that (and perhaps she is)

The thing is, at this point, you don't have to go into long winded explanations and details. It does nothing to aid the situation. You know she's not going to listen, you know it'll only hurt her, and you know it will only encourage her to act out her destructive behavior. Listing the details only unburdens you, and only serves to try to improve her one last time. (Gah... this is sounding harsher than I mean it to... I'm sorry. sad.gif I don't mean it that way at all.)

I'm now ready to cope with this person... A year ago I was not and he most certainly was not.

I am too dealing with weight gain issues. I only wish mine was 7 pounds. I know that makes you feel awful as your wedding is coming and such, I am sure you will look beautiful on that day either way.

I am now the heaviest I have ever been. I never ever thought I could weigh as much as I do now. I get some exercise with my son around.. walking a bit and such.. but I dont get much time yet to really get into an exercise routine. Life just gets in the way. I know I should just take the time for myself, but nap time for him is time for me to catch up on housework.

So I am also extremely depressed. I am also medicated for this. I wonder if it is b/c my body is finally ingesting the foods I eat. I dont eat bad. I eat fresh veggies at every meal, a light breakfast and a normal size home made lunch.

Well I hope you can get into a routine for yourself also. And congrats on the move and your impending wedding! My wedding was cancelled last year the day before it was supposed to be b/c I was in the hospital near death as they were still feeding me rolls!!

Well if that's your son in the photo life cannot be so bad

Your medication is unlikely to be helping getting into exersizing or your energy levels, especially if its a serotonin inhibitor however you should NEVER try withdrawal from this yourself .... if you don't knopw then read the product information ... never take any medicine for depression long term without reading the side effects and risks ...

I know I should just take the time for myself, but nap time for him is time for me to catch up on housework.

I don't know your circumstances but any help you can get to take time for yourself is time well spent.

Humans are not really designed to be able to bring up a kid alone... we are pack animals with a large amount of shared help. You should not be embarassed about asking for help in this from relatives, the father or whomever you trust to do it.

I guess I should have mentioned that I get D and projectile vomiting immediately along with the pain

This sounds like something outside fo the normal IgA,IgG responses (as you obviously realise from your answer below)

, but no brain fog as of yet.

Give it time, its like on of those magic eye pictures once you learn to spot it its actually quite obvious... its often also obvious to a close friend or partner ... however given your early projectile vomiting you are obviously already aware.

Don't think its a bad thing... many of us detest brain fog .... and yet lived with it for years without realising it.

Realising it for the first time is quite an epiphany... concentration problems and mood swings we hadn't realised we had become controllable and we hate loosing that control again, hence the strong hatred of brain-fog but at the same time its rather refreshing to suddenly feel so much better than what you thought was normal.

My blood sugar also drops almost instantly as if I'm in shock, and my insulin to carb ratio changes from 1:15 to 1:45 for a day or so. This can't be just because I'm not absorbing my food since it happens instantly, so I have yet to figure out the mechanism aside from my body going into "shock".

No this is obviously not a direct antibody response.... but it might be an initial immune system response that in you is atypical. Rather like the raising of body temp as the body prepares for the antibodies?

I really don't think I've ever had withdrawal, so I really am curious. The first day I cut out gluten I felt better. Still weak and tired, but "better".

I had depression with full gluten ingestion just prior to dx, and it actually went away gluten-free, which logically makes sense, but of course this is my personal experience alone.

On the former your use of superlatives is perhaps telling? Is this rhetroic? anyway.... "better" ... I think a couple of things influence this not least of which is your level of general illness prior to going gluten-free and the "degree of gluten-free"

bringing me to

Don't forget that it takes up to a few days for the full autoimmune response to occur in some Celiacs after gluten exposure, so it would be very hard to determine withdrawal verses prolonged symptoms in those people right away.

Yes and equally it takes even longer for them to subside afterwards... its obviously a little more complex.

I think most people who try a gluten-free diet do not get it right at first. Hidden gluten and CC are hard enough to seasoned gluten-free'ers not to mention the stubborn people like myself who convinced myself I was ...

I actually have heard of Celiacs getting "boils" after gluten exposure. We don't know though if it's from a directed immune response to the skin/manifestation in those with specific genetics after gluten exposure, or due to the fact that the body is trying to expel a toxic whole protein.

The we sounds possessive your prior context being 1st person.

(I read between lines all the time, you don't know me so don't be freaked out, its not the spanish inquisition!)

Anyway, our three main weapons are surprise... (damn drifting again....I got glutened, it happens)

Sorry back with you.... analysis of the contents would solve the latter... I guess this costs money so it seems unlikely to ever happen... so we are left in the same doubt as why does it cause seizures?

I have also heard of Celiacs having seizures with Gluten exposure.

People have to remember that fasting doesn't have any benefit aside from giving you low blood sugar (which can trigger seizures and abnormal brain waves in some)! The liver was designed to rid the body of toxins, a job which it does every second of every day. It is still clearing out waste products due to normal metabolic processes whether you eat or not. It does not need a "break". Only your liver can rid your body of toxins, and at a set rate. In fact, when you fast, your body produces ketones, an incomplete by-product of fat breakdown, which are actually toxic and acidic themselves. Please do not let anyone with a hx of seizures fast!

Couldn't agree more however it is very easy to be put into a position of fasting instead of eating a suspect food.

When your response is a full or even partial seizure (not me) I can understand why people are scared to take a risk.

Hey, I wouldn't ask so many questions if I didn't think people on this board weren't smart enough to answer them

Yes you just unfortunatly posted very early by board time which is largely American ...in the geographic sense of the word..not to exclude Canadians and latin Americans ... so you might have to wait a while before the majority of people are answering, meanwhile you will have to make do with a not so smart person ... but don't give up hope!

Sorry, I forgot to point out that you meant fasting in terms of completely eliminating gluten, but this can be done by eating foods in their natural state taking care to avoid cross-contamination. I just feel that fasting is unnecessary and even harmful for some. This is one thing I find too "quackery" for me and without scientific basis.

Mostly yes.... but in practice one finds oneself in siutations in life.

It's ridiculously easy to make sure you don't die in an automobile accident if you restrict your life to never leaving the house The problem is I (we) get all kinds of assurances from airline food to working lunches that just fail to transpire.

are you sure? people can often be mis-guided. when i was trying hard to gain weight, i realized i wasn't even clearing 2000 a day, which is a minimum at most for me, as i was a runner, too.

have you ever tried counting for a day or two, just to see?

It might not even be calories but a single nutrient.....

Lister, with all due respect you do eat a lot of nutritionally poor quality foods like chips and stuff but you also obviously make an effort....

Why don't you do yourself a food diary.....

Since there are loads of us here who are happy and willing to help you could just set yourself up with a free blog and use that as a diary.

It would enable you to see what you are actually eating and also look for nutritional holes....

Everything positive you do will ease the stress.... the most stressful thing is feeling like you are not in control but really you are... its just the whole gluten-free thing starts off so confusing.

Hi Ursula, Well, I'll be avoiding gluten from now on anyways, but I want to be sure that it isn't something else . . . i.e. I'm allergic to wheat (positive scratch + blood tests) and barley, rye, oats are cross contaminated with wheat. . .so maybe my reaction to these grains is from the wheat allergy. I know that blood test is over 90% reliable if positive, but I want to make sure. It *will* make a difference--if I'm just mildly allergic to wheat (never had an anaphylactic reaction to it) then I won't worry about x-contam. so much and can have rice milk and things with traces of gluten. (My diet is really restricted as is---can't have a lot of things that people have when avoiding gluten--like potatoes, corn, buckwheat, quinoa, amaranth, soy, any bean flour, eggs, nuts, seeds etc. . . . ) So if I lose just 1 food that I used to eat it is a big deal nutirionally.

Also, I would like to be followed closely if I do have celiac disease. I want blood tests repeated every several years to see if that tTG antibody disappears . . .

I know that the biopsy might yield a false negative . . . before undergoing the test I'll talk to my GI doc to make sure that he doesn't think negative test results = definitely no celiac. I don't think he'll conclude that--I'm sure he is aware of the limitations of the test. If the results from the biopsy aren't conclusive they are supposed to do genetic testing and then consider repeating biopsy (according to the medical literature).

Hmmm....will try to convince my aunt to try to convince my grandpa to try gluten-free for awhile.

What does according to medical literature mean?

There is a whole load of medical literature that says the biopsy is completely ineffective as a diagnostic tool, it all depends which medical literature you want to believe.. the balance is fast changing and in countires like Italy which have a diagnosis rate over 50% based on 1:200 people diagnosed and 1:133 in screening it abandonded as a diagnostic tool.

A biopsy does however give the chance to test for other things like Cancer.

There are two distinct cases....

A suspected celaic who is eating gluten and one who is not.

In the first case then a biopsy is perhaps interesting... it can show the current level of damage.

In the latter case then it is either meaningless because the patient is gluten-free or if the patient deliberatly eats gluten to cause damage to get a positive biopsy .... nothing short of crazy.

You started this whole thread based on the fact many "older" celiacs do not make a complete recovery ....

You have been effectively gluten-free for 2 yrs....

What you are suggesting in the case of a positive biopsy is deliberatly trying to damage one of your bodies important organs and this organ may not ever fully recover.

If you have a full celiac panel blood test with IgA and IgG in addition to transglutamase then the tests are 98% accurate compared to a biopsy but a biopsy isn't 98% accurate itself unless its done post mortem.

-if I'm just mildly allergic to wheat (never had an anaphylactic reaction to it) then I won't worry about x-contam. so much and can have rice milk and things with traces of gluten.

Celiac is not an IgE reaction! wheat allergy is. If you are celiac by a full celaic blood panel and have a negative biopsy and keep eating gluten I would give you 100:1 odds on that you will be positive by biopsy in a few years.

Of course you might win, you might be hit by a bus ... have an accident parachute jumping or be struck by lightening.... many smokers make the same excuse but I strongly beleive we have to act like we are intending to be around in 10yrs time... even when we are 80!!!!

I spoke to my 80yr old 4x bypass and pacemaker father lst night, he just started pilates because his tennis is really stressing his octagenarian back.... he doesn't want to have to stop playing tenis in 10 yrs because of his back!

The reality is he doesn't have 10 yrs... he has a total blastectomy and his pacemaker stop's he dies.

Its an old pacemaker and he's theoretically too old to have it changed so when the battery runs out he dies but this doesn't stop him playing tennis (which incidentally uses up battery faster)

I totally forgot about gluten's affects on the CNS in some people! So that does make perfect sense. And how Schizophrenia and/or Schizophrenia like symptoms are often present in Celiac's after gluten exposure.

Now, since not everyone has "withdrawal" symptoms, I wonder if it's an additional gene that must be present, or if those people have additional receptors.

I for example have insane amounts of zonulin, and large intestinal "gaps" (as demonstrated by 3 autoimmune diseases, extreme sensitivity to gluten, and severe reactivity) and yet I have never had withdrawal symptoms, although I do miss the TASTE of gluten containing food....sigh.....

It's quite ironic that endorphins by nature are intended to be a natural pain killer and relaxer. I just think about how I feel after being glutened and yikes...pain isn't the worst of it!

For those of you who have had withdrawal symptoms, what do gluten cravings feel like? How long until you feel better?

Ah, just joined, you don't ask much do you? (just waxing a little poetic at the moment)

Describe the inexplicable ... now there is a challenge. You ask the hardest questions, I would love to be able to explain it to my GP and GI....

Seriously, good questions .... but I think you might also have given some answers.

I just think about how I feel after being glutened and yikes...pain isn't the worst of it!

Im starting to think that perhaps this is withdrawal and that 'brain fog' and associated stuff is actually exorphin controlled.

One thing I have noticed on my own tests is I can eat gluten and be ill.... but if I constantly top up the gluten the worst comes when I finally snap.

If you compare this with giving up smoking (another thread right now) obviously the health of the average smoker isn't great... but so long as they keep topping up the toxin the withdrawal phase comes every few hours or minutes depending on the level of addiction.

The body is not very good at seperating these signals... hence why people eat to offset it because the body really only has the "put something in me i need something" feeling.

Depression is quite easily explained by damaged endorphin receptors.... but so long as the gluten is attached it at least partly functions.

There are also the "wipe the breadcrumbs off brigade" who also don't suffer withdrawal either?

and then turning the whole thing around, its a bit like smoking again.... the damage is something that happens over years... the 60 a day smoker has no idea what it is to wake up feeling "normal" in the morning because to them "normal" means with nicotine. I think its distinctly possible that actually the tolerance level is very low.... and that our idea of normaility is distorted. Very small amounts may keep the system ticking over ....

Most people don't even associate these symptoms as symptoms until they regain a normality on a strict diet for several weeks or even months....

Addressing another question.... a lot of toxins are stored and/or expelled through skin. Not only DH but many of us get annoying "boils" .kinda like acne.. i get them after glutening as do a few people here....

I also know people who have had seizures after fasting... who's seizures are gluten controlled.

I think again its possible this is release of these hidden away toxins through fasting.

Sorry I can't be definitive, if I knew the answer I would be rich !!!!

thanks everyone for the great suggestions! when i first went gluten-free i defintley bought all those gluten-free goodies like the brownies, cookies etc.... i would normally not buy them so why i bought them after being gluten-free who knows? i guess i felt bad for myself. i dont buy them anymore but occasionally have a cookie after dinner.

I think its just human nature... something gets taken away so we compensate.

It doesn't really matter in a way.... especially once we realise .... but I think lots of us do the same.

There is also the "it says gluten-free" on the packet syndrome and not to put to fine a point on it we live in a product driven society.

im moving this week and will join the gym as soon as i move. i have 3 months to get in shape so hope thats enough. my wedding dress was a bit tight- oy

Well moving sure as heck is exersize!

You really don't have that much to loose, 3 months should be fine, just remember it takes some time to turn around.

You could usually gain a week just buying a home exersize video/dvd.and doing an hour a day.. but considering your moving this is probably not very practical!

Read the link page.... look at those calories and you will realise that you can turn moving itnto a workout.....

Some of the stuff is quite surprising... like vacuuming... and packing boxes and stuff is pretty much a workout in itself