gfp

As you all probably remember, I too had to take a break for a while (go into my famous shell, so to speak), when I was attacked by a few particularly vicious posters while I was a moderator. I completely understand the need to take a break sometimes.

It is true that this forum, or any for that matter, is cyclical. Us dinosaurs have been through it, trust me.

One important point I want to make:

IMO, the MOST IMPORTANT ROLE anybody can play on this forum and in this community is to welcome and be there for the newbies. Everyone I think remembers how scared and lost they felt when first diagnosed or when you were searching for answers. Another plus is if we are there to cushion and support the newbies with compassion and clear, concise information, the end result will be an even better support system base for all the newbies of the future.

I too see many newbies posting and I no longer see the welcoming posts following them and the usual "you will find a wealth of knowledge here and don't worry about asking questions, our motto is that there is no stupid question in regards to celiac", etc. etc. etc......

We need to get back to basics, folks........

Hugs.

Karen

Karen,

Much as I agree with everything you said, its also true that celiac disease has changed....

For instance in the old days we didn't have a McDo 'oil' test....

In one way this makes it easy.... one can just folow the official analyis OR the offical McDo position which is i think they may not suitable for everyone ....

I mean, I see Vincents point.. but the problem is that mary, joe and jane all did get sick from McDo's fries and Jim, john and jenny didn't.

In the end if one person posts they are safe because ..... then someone will post "my child is sick everytime"

When I have posted direct info, Ive been accused of being to harsh (cross contamination). If I explain why then its a conspiracy theory and even if I don't post why someone will ask.

Im only gonna repsond to this point, cuase I think this is very key. I completely disagree with that statement. Food ABCXYZ might be on a list as gluten-free, but in recent days Joe, Tom, Sue, and Sally all tried it and got glutened. That information would not be in a list, and can not realy be gotten any other way then a forum (or local support group). THat information is often far more vaild and real then the lists.

Yes but that is the point, I think we both just see that point differently.

To me that questions other gluten-free (or not) foods by the same manufacturer.

It involves writing to the manufacturer and letting them know... etc. etc. which is why I added the BUT.

Its like the McDo fries.... are they gluten-free?

A simple Yes/No answer isn't so helpful because in general (apart from local specialist knowledge of a certain one) CC is a huge issue. I don't think its responsible to just say "according to ...." the fries are safe because we all know and most of us have had onion rings in our fries (bonus?)

GFP,

I think what you miss, is that majority of the ppl comming here are Mothers who do not have time to dig the all the crap and just need some respectfull help. Respectfull help is being lost in everyone's pet cuase and wacko theroies. Not saying you post wacko theroies, talking in vast general here.

For example if I post asking gluten conten of <random junk food>, I do not need a lecture on why junk food is not good for me, nor do I need a lecture on the FDA control of <insert random ingredient>, or some talk about how Godzilla runs the goverment and we are all gonna die form lack of oil. I just need to know if the snack my son might have just gotten (or will be exposoded to at some random location/time) has gluten or not. Its becoming harder and harder to get that info here.

And the most imporant thing... This is a volentery site to come get help. If you do not feel it is a postive helpful place, you should leave and find one. This is not a job where you have to go, or a community where you have large amount of money invested in a home. Its is an free internet forum.

This is not the only celiac disease forum, jsut used to be the best... only time will tell wether if it will continue to degrade or get better.

I'm chopping this up a bit to answer... just to make the answer easier

For example if I post asking gluten conten of <random junk food>, I do not need a lecture on why junk food is not good for me, nor do I need a lecture on the FDA control of <insert random ingredient>, or some talk about how Godzilla runs the goverment and we are all gonna die form lack of oil. I just need to know if the snack my son might have just gotten (or will be exposoded to at some random location/time) has gluten or not. Its becoming harder and harder to get that info here.

Erm to be honest that is something better done as a searchable list not a actual forum.

The problem is as you know so well yourself is that these lists keep changing.

Is this a conspiracy? No its the way companies work... but different companies work in slightly different ways.

In the end they ALL want to make money, that is why they are in business ... so a simple answer on one product is not possible... the best in many cases is from product number xxxxxxx to xxxxxxx brand X cereal was gluten-free but from xxxxxxx they switched production etc. etc.

I'm not picking on you here but you made a big question as to WHY for the cereal... the reason I'm not picking on you is its a totally valid question.... the answer in its shortest form is because its not financially the best thing to do for them according to their studies. (or it could be just a random golf game with some supplier offering a cheaper product??? )

in particular

Its becoming harder and harder to get that info here.

Yes but perhaps that reflects the growing number of diagnosed celiacs, new legislation and new (inventive) ways to bypass it? At least in some cases?

One problem with junk food as a whole is the more processed a food is the more likely to contain hidden gluten. However many people here also have weight issues

And the most imporant thing... This is a volentery site to come get help. If you do not feel it is a postive helpful place, you should leave and find one. This is not a job where you have to go, or a community where you have large amount of money invested in a home. Its is an free internet forum.

This is not the only celiac disease forum, jsut used to be the best... only time will tell wether if it will continue to degrade or get better.

This is really where I disagree......

You see the same thing on many forums.... I'll take techy ones as an example.

Someone posts some really simple questions... they get answered and the person starts getting to grips with whatever technology. Sooner or later many start ranting that noone is answering their questions!

The reason is usually they have gone into a specialist area and no-one knows the answer.

When you are dealing with health then its important to be a bit more explicit (IMHO) ... in particualr junk food because this is what many noobies get pointed towards... things that actually SAY gluten-free on the packet.

Finally

This is not a job where you have to go, or a community where you have large amount of money invested in a home. Its is an free internet forum.

There are more important things in life than money. Health is one of them IMHO.

As it happens I quit my last job for health reasons .. at least the travelling and being put into CC issues and even getting anything to eat at all were a large part of this.

This leads to all sorts of other contraversial subjects like "home schooling" ... in the end if your child is being poisioned through negligence and ignorance at school then its a valid reason to home school. This in itself can lead to other discussion....

The most important thing is that just because money isn't invested doesn't mean just walk away when it stops being helpful.

Personally I find I have learned a lot here but equally I think that means I should now put-back.

If everyone who gets to a certain level of understanding leaves because they find they are putting in more than they receive then truly the board is doomed or it will at best be the blind leading the blind.

When i questioned my doctor about this she assured my that the blood test was 90% accurate and said that it was exteremly uncommon fior someone of my age to develop Gluten intolerence (i'm 19).

Yes of course its uncommon if MD's don't test because ... its uncommon!

The accuracy of testing depends on many factors... most important are having a FULL panel AND eating gluten.

See

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I respect your decision to leave, I just think you have given a lot of really good information to people and wish you could just ignore what you don't like. If that's impossible then I am sad but I understand. I think as a whole people are upset with the medical community because many of us have been misdiagnosed for many years, that being said I don't dislike the whole medical profession, for myself I just wish I had listened to my body earlier before this whole celiac thing took me down, but I didn't so I share some of the responsibility. Oh, well, I think I am making more of a mess of trying to put my thoughts to this. Sorry, hope you change your mind

Best of luck to you. Come back soon......

Erm, is that a cop-out by me?

Just because rikki tikki said it for me?

OK....

Well the post raises so many seperate issues...

First of all Chelsea....

All boards have a life of their own BUT you a part of that life.

The content of threads is pretty much like migration... it shifts one way and then another.

The one control you exert are your own posts so by leaving you will push it slightly more in the direction you don't like! On the whole the nature is cyclic .. it leans one way then the other.

Secondly ...these boards are a community. All communities have a wide range of peope, even if you decided to live in a shaker community you will find the radical ones and the traditional ones ...

This board brings together diverse people from different backgrounds and even countries... so it is many times that difference.

Thirdly .. "conspiracy theories"....

This is a real useful term for anyone involved in trying to cover up information. Its like shouting gay or commie in the McCarthy era.

However the word theory is what seperates it.... there is so much hidden in plain view protected from being known by Joe Public simply by crying conspiracy theory.

It is not a theory that drug companies eeek to create life time drugs and not to cure, its a documented fact.

Its not a theory that the food industry wants to push processed food down our throats...

A conspiracy theory is aliens in Roswell.

Exactly like I said above you leaving will push this baord incrementally away from your perceived ideal of this board. In the same way if you are ready to dismiss evidence as conspiracy theory then you are adding to that. If you want to debunk it then you just post the facts. If you look and you can't find the facts then .... perhaps there is some merit in the theory...unless of course its a self defeating theory like the aliens came then brainwashed everyone to prevent anyone remembering!

Let me quote one of my own....

When I posted about fruit being kept in cold storage for months and additionally being sprayed with candida .. this is not a conspiracy theory. The facts are there for anyone to find.... its just possible because people don't wanna look or accept it.

Now if I had a candida problem I would want to know this but iots just another fact hidden in plain sight.

The Somebody Else's Problem field (SEP field) is a fictional technology from The Hitchhiker's Guide to the Galaxy "trilogy" by Douglas Adams. It is a cheaper and more practical alternative to an invisibility field.

Concept

Spoiler warning: Plot and/or ending details follow.

Simply put, an SEP field is an energy field similar to an invisibility field. When somebody, or something, is surrounded by a SEP field, the human brain perceives it as "somebody else's problem", and therefore will be incapable of paying attention to the object (or even seeing it, or recognizing its existence) unless it is being specifically looked for. A primary example of this was given in the third book Life, the Universe and Everything, when a UFO (a spaceship powered by the Bistromathic drive owned by the character Slartibartfast) lands in the middle of a cricket ground during a match, and the assembled crowd completely ignores it. Another prime example occurs when the aforementioned ship's field is extended so that the characters fail to notice the fact that they cannot breathe or the fact that the asteroid that they are standing on does not have enough gravitational force to hold them down.

The SEP field requires much less energy than a normal invisibility field (a single torch battery can run it for over a hundred years) due to the natural propensity of humans to see things as Somebody Else's Problem.

Was so occupied here with family visiting I have hardly been on my coputer for 2nd day until tonight!! came on tonight to a lot of NICE messages!! Want to THANK you all so very much!! Seems I have a second family on here!! We had a wonderful day with much family, friends & pastor here to share cake and ice cream with us. All except our younges dd, hubby and ddog are gone and they will start back home mon. am.

So of course i am on the tired side..g'nite dear friends.

Who wouldnt be!

I spent last night listening to a legend .. a man of 81 (as of the day before yesterday) who tackled his illnesses and walked on stage (though he had to be helped on and off)

“A lot of people would like to have the actual truth. Some people don’t believe that diabetes is life threatening. But it is. I lost a sister and a niece who had diabetes. I tried to beg them to do what they should, but they’re not with me anymore.”

His message about the importance of diabetes management and blood glucose control is clear. “Make sure you check your blood sugar and see your doctor. Try your best to go with the diet you’re given— and don’t cheat by eating foods or quantities you’re not supposed to, or by doing things you’re not supposed to,” he says. “I’ve lived a pretty long time. I’m not sick today, and I haven’t been sick for a while.”

Just thought I'd share this in case anyone is feeling old... (and because the whole concert was so amazing and moving)

If its not clear already its obviously the great BB King!

This is a good idea--I was kind of wondering the same thing--but I didn't know which agency would best handle something like this.

Its not so much impractical... beleive me I have so many friends begging me to come over ... I am just morally opposed to the biometric passport and being treated like an animal. (This isn't the thread to discuss biometric passports and the current US immigration policy ... and the UK's collecting of said same info .. I just don't agree with it and I'm a stubborn SOB ... (as I think you all know)) but if anyone wants to know you can pm me or start a thread in GAB.. but please don't ask here... else the thread will end up useless!

From what I read the natural immunity is different to the vaccine one. (for a start its apparently much more effective) but I'm guessing they would want to infect me with the same strain (hopefully a crippled one) and then use the specific leukocytes produced.

my parents told her that if she would quit her job, they would pay her rent . . . . they are very worried that with a full school schedule, plus working close to 40 hours per week, her immune system will collapse and she will go into full-blown TB.

Yes but quiting a job is equally stressful.... people can have latent TB for years and NEVER develop it...

BUT because the treatment is hard on the body its much better to tackle it younger....

Like I said earlier the horror stories are because its mostly found and treated in either 3rd world countires or very poor communities where the ongoing testing of liver function etc. are not carried out...

Oh, no, not another clueless doctor! He is utterly wrong about numbers not changing for some people even when on the diet. If that happens, it means that they aren't really gluten-free, so is significant.

Yes but I think in this case its possible the advice isn't SO bad... perhaps just confusing....

There is no such thing as having celiac disease very mild. You either have it, or you don't. Some people get terrible symptoms, and apparently you don't. But that doesn't show the damage that occurs in your intestines. I've heard of people who's villi were completely destroyed, yet their only symptom was anemia!

You could also take it that the GI means symptoms wise.... I mean reading jtangema's post and allowing for the normal level of confusion we all mostly had when first diagnosed I think what he meant was pretty much what you just said. That is he was refering to symptoms ... He obviously made it clear that this didn't mean it was OK to cheat so I think the "mild" he's refering to symptoms.

On repeated antibody testing ....

I think this is completely different for adults and kids....

With kids it is necassary because the parents need to know how well the kids are keeping to the diet. In adults I can see why he doesn't want to keep testing... (my GI always wants to test me amd I refuse) ...

The logic here is if you have been accidentally glutened or are just not keeping to the diet.

Someone might not react quickly to a single glutening in terms of antibodies... and antibodies are going to hand around for a long time after.

In my situation, I know from time to time I get glutened through eating out... its a fact of life of eating out IMHO and I do everything to minimise it but you can't eliminate the risk other than not eating out.

So keep testing me randomly and I'll have elevated levels from time to time BUT I do understand why.

However: andthis is a big however...

You may want to eliminate dairy (and I mean ALL of it) and soy, to see if it makes a difference. Those two are the most common ones people with celiac disease have also. Also, both can destroy your villi as well.

If you see an improvement, that means that one of them (or both) are a problem as well. Most people with celiac disease can't tolerate dairy at least for a while, until their villi are completely healed. Some are able to have it again after that.

Also, have you made sure you have eliminated all possible sources of cross-contamination? There is so much doctors don't know, and therefore don't tell you. You need to go through all your personal care products, as many contain gluten. Check your shampoo, conditioner, mousse (if you use any), lotion, lipstick/lip balm, soap, toothpaste etc. for things like 'wheat germ oil', barley extract and oat bran. Replace everything that has one of those with gluten-free brands. Also, watch out for vitamin E, as it is often made from wheat germ oil.

If you still use your old toaster you're likely glutening yourself. The same goes for plastic colanders and wooden cutting boards and cooking spoons, and scratched non-stick cookware.

Okay, now that I set your head spinning, I'll let you digest that. There is more, but this will do for now.

I agree 100% ... as I have repeatedly said..just post diagnosis is when we were all at our lowest both physically and mentally.

My heartfelt advice for ANYONE newly diagnosed is do it 110%....because this will set you into recovery much faster and not keep setting you back while you gain knowledge on other issues like hidden gluten and CC.

I have to say I don't think this GI is half as bad as most because he is actually treating the adult patient as an ADULT... what they are missing out of is what you can only learn by going gluten-free ... which is all the potentiual sources of CC and hidden gluten.

jtangema: Its perfectly normal to be confused at this point. we all were too.

I hope you figure it out. Forget about your doctor, it's better to figure it out yourself, you can do it with help from this site!

I wouldn't say forget this Dr. they seem at least 50% clued up which is 49% higher than most GI's! Honestly I think this is a GI you can work with. The ones I would say forget are the ones who insist on repeated challenges ....I think your confusion is probably not understanding the GI and that doesn't mean your stupid ... diagnosis is often like a bombshell and when we walk away we are often left confused simply because it was too much to take in.

My advice is pretty much as Ursual said....

Firstly eliminate gluten 100% to the point of no possible contamination.... prepare yourself for 2-3 months of cooking everything yourself... because in this tiome your body will repair AND you will learn a heck of a lot ...

When your first diagnosed you have maximum damage so your whole digestive system is functioning at minimal efficiency. Just a single accident can knock you back a week in recovery so its like 3 steps forwards and one back.

If you can then simply take away that risk as much as possible... including pans, toaster ovens and stuff.

This will make it much easier to stay gluten-free ....

Once you reach a point (you yourself will know) then you can start experimentally adding eating outside the house (its a whole new game.. you have to transfer what you know to a waiter and make sure he tells the chef... BUT you need to be very certain to do this efficiently)

Foods like soy and dairy do affect a lot of people especially at first because the intenstines are so damaged that these react as well. My diary tolerance is pretty much linked to how well I have been gluten-free... whne I have an accident my dairy tolerance plumets .. when I'm good for a long time its much better and I get very mild reactions sometimes.

Soy I have always been OK with (so gfar as I can tell) BUT... I choose to limit it...

I don't think my body processes it too well bUT also I don't want to start eating a lot of it and end up with another intolerance! This would seriously limit what I could eat.

Okay, now that I set your head spinning, I'll let you digest that. There is more, but this will do

for now.

Couldn't agree more

If I was going to cheat, it sure wouldn't be for junk food.

Absolutely...

The times I have cheated have been AFTER an accidental glutening.

The excuse is usually, I'll be ill for 1-2 weeks ANYWAY.. so make the most of today but then I seriously do try and make it worth it ... like real Pizza in Naples....

KFC... works pretty good homemade gluten-free... so that wouldn't be my idea of making the most of it....

Thank you all, so VERY much.

gfp -- my daughter's doctor didn't call her back yet. She has an appointment, I believe, in the beginning of the week. I have to say again -- you are amazing. I can't thank you enough for offering this. If I am not mistaken, you are atheist? I have been yelled at by MANY a family member that I must be an "agnostic" -- because I believe in a God, I'm just not sure yet in what FORM . . . . would it be okay with you if I said prayers of thanks for meeting you and for the type of person you are? I find your offer to be so generous . . . it boggles my mind.

Lynn, feel free if it helps you .....

Look, its no big deal really. I am a big supporter of voluntary blood donation but most of my working life I have been excluded because of travel and the fact they don't want my blood when I have been in Africa/Asia in the last 3 years since screening everything is costly on a individual basis.

My girlfriend has a rare blood type and always donates... and once again I'm malaria free after 3 yrs so I can too!

My girlfriend is also signed up for bone marrow so if they need marrow she will get a call.... now that is scary... but as she says with her blood type its the least she can do.

So for me, I spent most of my professional life a bit peeved I couldn't contribute by giving blood ... people die all the time because of lack of blood for transfusions but I understand that by having to screen mine for everything from yellow fever to malaria its too expensive as a regular thing.

So finally I'm free of having travelled to certain countries in 3 yrs.... I can give blood and I find that something I never really thought much about (my TB immunity) might actually be useful and my only excuse for my American friends for not visiting is my non biometric passport which I'm opposed to on ethical grounds....

Helping someone with an illness completely blasts my stubborness on biometric passports out of the window ... really this is the only issue ... giving some blood? Heck I make more than I need (specially from a oxygen level), antibodies.. got them spare... so honestly the biggest thing I have to over come is the passport....

I'd be lying if I said I wouldn't look forwards to visiting all my friends..... and really this is the only thing putting me off. Yes, I'm stubborn but much as I might make life difficult for myself over my stubborness .... (ah ya get the point) ....

Steve, thanks for your thoughts and for truly trying to help, I appreciate it. The weird thing is, that just about everybody thinks that Ken is this incredibly nice person. He treats people in the community well. Of course, he doesn't really let any of them close, our pastor is the only one he actually opens up to. Everybody else just gets his best impersonation of the perfect Christian.

And even the pastor and his wife are telling me now that I shouldn't tell anybody but them what's happening, because as a 'good wife', I need to make sure I don't damage his good reputation. Meaning, that his reputation, and the work he does for the church, being a 'pillar of the community' is far more important than I am. In effect, I am now asked to 'keep the family secret' for the greater good, putting a guilt trip on me! I am very upset about that, and I'm not sure what to do yet.

Ahem, sorry I hate "blackmail" but if this is what they think then they had better do something more general than marriage councelling.

This is just my 2c but I think the pastor is wimping out of the bigger issue and hoping to patch together appearances for Ken's "good reputation".

You need to make it clear that sooner or later you won't be able to put up with any of it and that good reputations be damned ... I think you are entirely correct in "putting a guilt trip on me!" and that is because the Pastor is not tackling the wider issue so he is probably subconciously trying to pass the buck.

I'm sure he is not sure how to approach this and is scared of upsetting Ken.... well tough beans ... because by not tackling this he is upsetting you far more.

I'm viewing this perhaps like a work situation... where one very gifted employee but very hard to approach is upsetting others. The manager might not like addressing this but that is a part of their job. From what you say of your community I think this is an apt comparison.

I think you need to make it plain, you only have so much strength ... it is finite and will snap and agree with the pastor that this is mainly an extension of Ken's overall attitude to people, specifically those in your community and that obviously you have the worst of it because of proximity BUT unlesss Ken is made to realise that upsetting people to get a job done is not acceptable that even if you were not there it would be transferred onto someone else....

Meanwhile keep your seperate egg baskets going!

Sorry, I was referring to the United States, though Lyme is found all around the world. I think Iceland would have VERY little of it!!

and PS>....WHICH THREE species of ticks would that be?????

Lymetoo:

That's really all I'm trying to say is that I can't dismiss Lymes leading to celiac but since celiac's exists in places with no Lymes (and Iceland is possibly specially high in celiacs) that it cannot be the sole cause of celiacs.

But the bottom line here is that it is time to close this tread. There are newbies out there and they need our help. If you are spending time on a "go no where subject", you are not available to help others. All of you, remember where you began here on this site. I did not know where to turn and I expect that so many of you did not.

Chill your buns and go forth and help the ones in need. Be done with this mess.

Agreed

Wow, some people seem to be really overreacting. This is not dangerous medical advice. Going on gluten again is common in blood test positive celiacs for the gluten challange for 6 months or more without any adverse long term effects. I said she should TRY it for 2 weeks. No harm in that. Believe me this is NOT like insulin, and it's not going to kill her. I tried to help by giving medical facts.

By the way this is my last post on this forum. So, I'd like to wish Ursula and other people on this board continued recovery from their health problems.

People who over react usually have a reason.

Since your not posting again you won't be able to answer this but is there any evidence that a gluten challenge doesn't harm people?

I ask since I know of several people who have been hospitalised by gluten challenges.... and also because evidence seems to exist that not all people ever fully recover from the effects of glutening, especially older people (post 30's)

I didn't read the original thread so I'm not getting the full picture but from these quotes - lines you yourself culled - I gotta tell ya, this is seriously offensive stuff . It looks like you were snidely suggesting that her opinions were invalid because she had a mental illness. Now I know you wouldn't deliberately try to stigmatize someone just to win an argument. There must be alot missing in translation here!

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What is tolerance? -- it is the consequence of humanity. We are all formed of frailty and error; let us pardon reciprocally each other's folly -- that is the first law of nature.

Voltaire

One can read into that whatever ones wishes and by compounding what someone said over several seperate posts compound it further! Knowing fiddle-faddle as I do I find it hard to believe she meant it like that...

Several times I have been accused of being too tough or last time it was "HARSH".by a third party.. and then in most cases the poster has actually thanked me. This is always a danger of communicating without facial expression and in economy of words on a board like this.

I don't agree with fiddle-faddle's interpretation of Gina BUT I do not accept she would deliberatly say anything offensive but people can take offense at the slightest thing....

Yesterday I was buying groceries and the Arab guy spotted my accent and told me the price in English so I joked back and asked "How much? 22 Euros " in Arabic.... and he got all offended....

Meanwhile elsewhere some guys are asked to get off a plane on the basis of them speaking Arabic?

Prejudices are what fools use for reason.

and no I don't mean your a fool, Im just in the mood to quote Voltaire!

That may not be too surprising if your system isn't used to it. It takes time for the digestive system to develop the proper enzyme balances and so forth. There are a number of other factors too, but basically I wouldn't recommend switching between raw and cooked all at once. Just like you wouldn't expect to compete in a marathon without proper training for awhile beforehand. Body builders also know that they could actually have a heart attack if they were to suddenly stop all their intense training and workouts. Either way it's a shock to the system when it's not prepared.

I agree on this... but I think a mix of raw and cooked (some items like rice obviously need cooking) is probably best.

I do agree it's cultural. That same person I mentioned grew up by the sea, and was comfortable with diving for oysters, splitting them open and slurping down the contents right there on the beach!

Yeah, the first raw food I ever ate was peer pressure from Scallop divers ....I thought I was going to throw...

I'd say you are fortunate to have such certified organic stuff.

We don't have much of that here, and a lot of the meat at the supermarkets (at least around here) are borderline spoiling. You can often see the shiny mucus that forms from the overgrowth of bacteria. Many stores also hide older meat by repackaging it with a bit of fresher meat over it. They'll do anything to make a buck. Then when you get it home and start using it, you find old, gray, slimy meat underneath. There are stores beginning to carry more organic meats, but not many, and the price is so steep most people can't afford it. Fish is even worse. There was one place run by actual fishermen that only sold fish one day per week when they hauled in their nets and the fish was actually caught that very morning. I don't know if they are still in business, but you couldn't find a parking space near the store on Friday's. That was the only time when I actually smelled and tasted fresh fish. It doesn't stink when it's fresh, but the stuff in the supermarkets always wreaks.

Yep, I know and I make every effort to pay more and eat less meat.

I'd rather have half as much organic and certified than buy at a supermarket ... but unfortunatleymany people don't so the traditional butchers are being squeezed out.

When I lived in Oslo you could get Fresh fish right off the docks and I used to go down and find myself surrounded by 90% immigrants... and loads of Norwegains buying from supermarkets (go figure?)

I suppose the market change will be very gradual. I don't go in for the standard American diet, but meat is one of those things I'd never eat raw. Especially not the horrid stuff being sold around here. There is at least one local farm selling something that is supposed to be better than the factory-fed junk, but not eating any meat for awhile I haven't investigated it.

You sound just like me.... 5 years or so ago.

When I first came to France I was still buying meat in supermarkets...I'd never touch that raw even now!

I come from a part of England where meat is considered dead once its black inside... seriously.

Fresh fish is what you get from a newly opened tin!

In the area I'm in, drunkenness is a weekly routine thing. People pack the bars just to get pickled every Friday night. They actually want to get drunk.

Yeah... I have lived in a few places (Aberdeen, Oslo and Stavanger) particualrly where people actually say "lets go and get smashed", don't get me wrong I like a drink but I don't go out with the purpose of getting drunk!

Sometimes it happens ... I have a few but never on purpose....

This is obviously personal by person but I don't think that celaics have a weak immune system, rather the opposite.

I used to think I got colds which I now recognise as allergies .... (my colds were never the same time as anyone else).

Whne i take away my gluten symptoms like thick heads, migranes and GI issues I have hardly ever been sick and even things like Measles I just fought off without being ill.

I never get infections from cuts and the only real illness that ever knocked me flat was a very virulent strain of typhoid I fought it off in 4 days, my ex was hospitalised and the Dr told me it probably should have killed me. I'm naturally immune to TB... (I just found out how rare this is)

I view my immune system as hyperactive, it even wants to attack gluten!

What I do suffer from is allergy and this seems to be the base of all my problems. My body just massively over reacts.

For the record, I've tried marriage counseling with my husband, and it's useless. Since he seriously thinks he is perfect, and I am the problem, he goes to help the counselor fix me. Which makes things worse, not better. But I go to ongoing counseling myself, just to be able to cope. Otherwise I'd go over the edge.....I better not talk about what would happen then. And it isn't that I might harm others.......that is not within me to do.

Susie really is a kind soul. I was out this afternoon, and when I got back, I saw a note on the wall across from the front door, saying 'Mom and Dad, don't read this note to Janet', pointing to a note peeking out behind a picture frame. I could just make out that it is an apology about what she wrote under Janet's note last night. She is the type of person who can't live with herself after being unkind, and will apologize sooner or later.

All her friends (including a boy who is 18) go to her with their problems, because she is a good listener, and is compassionate and kind. It really hurts me to see a sweet kid like her being treated like garbage by her older sister, and her dad wanting to control her every move.

I met with a friend this afternoon (she is also the pastor's wife), who suggested that her, her husband, my husband and I need to get together (we've done it before, any difference it made was temporary) to get my husband to see how abusive he is. And to let him know that it is imperative for Janet to move out. She has the money to afford that, she has a full-time management job at a very large potato farm, and a part-time job as a freelance photographer for our local newspaper. I know she is trying to save money for a down payment on a house she and her boyfriend want to buy for when they get married (and Rusla, they are Christians and won't just live together before being married, he sleeps in our basement when he is here, while she sleeps in her room upstairs). But with them both working full time, they should be able to afford a modest house by next spring anyway, even if she has to pay rent.

Ursula: I seriously think that if you can make this about Ken, not YOU it would be better.

He already thinks he's perfect (or perhaps he knows is not and is acting so hard to be perfect ) BUT I can see that having perhaps the only person he respects telling him about the way he treats YOU is likely to have negative effects on the way he treats you (as if it can get worse?)

Ask the pastors wife about the possibility of the pastor addressing in the context of your community how he treats people..... don't give him a specific person to blame (except the pastor and like I say that is a part of his job)....

Seriously do you think I would be recommending a Pastor unless I thought this was the best?

He could give Ken some extra responsibility BUT say he needs to have spiritual councelling in order to do it properly for instance.

So far as Janet moving out.... I respect the "no sex before marriage" BUT they can live in the same house and have seperate rooms. Yes people will talk but isn't this between her and God? Is this not putting what people think BEFORE their relationship's with God?

The effort of controlling the gossip might well take over some of the controlling aspects of HER life.

When my symptoms were at their worst, I would have about 30 seconds notice to RUN (!!!) to the bathroom. There were several times where I had to push my children out of the way just to get to the bathroom 10 feet away. And there were times when I didn't make it. There's no holding it at ALL. It just comes out with no sense of it being there until it starts.

Makes perfect sense to me.

Nancy

I agree and the thing is with number 2's.... I have the feeling I need to go for hours..... when Im glutened its like never wanting to be more than 10' away from a loo and I get nervous when I see a queue....

In other words its like I know Im going to need to go urgently BUT it just drags out and them BAM! 10 seconds walking with my heels together!

In other words I think she is putting up with the feeling because she can't go and then accidents happen.

I can't think how to say this without being gross: Basically if you have lots of associated gas it gurgles through and you think you need to loo...you try but at best you pee outa your #2 ... go back top where you were and then all of a sudden that passing gas is passing D....

Its horribly embarassing for an adult.... it must be so horrid for her. PLEASE.. don't make a big deal (I don't think you will but no harm in saying it?)

Thanks so much for your replies.

Yeah, I need to read more on here. I have read a couple of books, but it is all so overwhelming..

I feel like some stuff doesn't say in books either. For example that charcoal briquetts have gluten. Toothpaste...I have read about it all here.

I am trying hard to make sense of all of this. I just ordered tests from Enterolab too. Gonna get checked for gluten, milk, soy, egg and yeast.

I feel I need to get some answers.

I feel I keep on getting sick so often. And every time I seem to figure out one more thing that I have missed. I have heard it is common to have it this way until you figure it all out.

Well, today my husband got me some new pots and pans and stuff.

I am working on it.

You already sound like you are way ahead of the curve....

You will keep making mistakes, view them as learning and validation and go forwards....that is what we have done and soon you will be posting what we just did to someone in your situation.

Thanks for the list. I wonder if that's what is making my stomach hurt bad for days, even when gluten free, and it gets all swollen. I've had a sore swollen belly for going on 3 days straight without a break. I am planning on going to the doctor Monday if it's still there. :/

shai76:

Its well worth testing and Nexium is massively over prescribed (IMHO). I had one GP practically wouldn't write me a script without adding it even if I didn't ask (dumped her)!

I think some people tolerate it better than omneparazole and others worse... but both of them take a few days to actually kick in fully.

iether way my GERD was really bad... I was having panick attacks not breathing and unable to sleep and 10 yrs or so ago before my celaic diagnosis and before omneparazole was invented I was told by my GI I would be taking ranitidine for life in massive doses. (500mg a day)

The ranitidine is not so effective and so I still had problems so I tried the Fit for Life out of desperation.

Even on the ranitidine I was loosing it... I once missed a flight because i wasunable to breath, puking and the pilot refused to take me (ironically on my way back to Europe for GI testing)

If I had the omneparazole or nexium I might never have go so desperate to try a quack cure like "fit for life" ...

Jeez, I just thought I lost touch with the person who gave this to me.... Im going to look her and her hubby up since he was a long term chron's sufferer.

So what I'm saying is please consider my prognosis about ranitidine was wrong... I thought I would never be off it and between gluten-free and occaisional food combining when I mess up (like drinking champagne and being glutened) I never touch or need drugs for this. I also lost a LOT of weight... which I'm sure helps.....

gfp -- just talked with my daughter again -- she was blown away by your offer. She is going to call the doctor to see if they want to do that, and if so, we'll get it in motion. We will reimburse you ANY costs that you incur during the process, should this happen. She said to thank you VERY much. Much love to you, Lynne

Lynne, other than the hospital I can't forsee any costs.... seriously my American friends are conspiring ...

I have a friend an ex air steward keeps offering me airmiles, her mom in Pensecola telling me I must visit and sending me packages ... my friend Chip in Boston offering me his beach house in NE and jeep if I will just get a biometric passport and visit.(also trying to blackmail me that he won't visit me if I don't visit him and his lovely wife but I found out last night he's going to crack and visit first).. and places in NYC, DC, Seattle ... the list goes on.....

I never thought anything of my immunity ... well when I was 11 I thought it was inconvenient getting a jab...i didn't need and I never really figured out why they were so perturbed by my immunity..I mean why do the test if they just jab you anyway?

Then since last night (European time) I looked around and apparently natural immunity is some genetic freak (no surprises I guess)...

Either way I talked with my girlfriend and I'm going to ask my (our) Dr. about donating blood for research anyway!

I just talked to my friend the air steward and she said she donates her DNA (she has a double cancer gene) ... and she just told me her mom has been doing more celiac research on me (products and telling Judy she has to really scrub her kitchen and use seperate utensils (Clydie your not here are you))

Other than that the side effects of treatment are largely age related but worse for females on the whole....

I think most of the horror stories about the treatment are probably exagerated by the fact they are concentrated in very poor communities and third world countries with no follow-up and monitoring.

Best wishes and good luck!

You made me hungry with the tuna statement Oh and you are so right. We as Americans want money so we spray our foods to kill the bugs. I wonder does anyone think if it kills the bug what does it really do to us. We want the money. after all we are Americans.

Why aren't the other countriesas sick as we are?

They could just as easily have been British and my table happened to have two Americans on it (my girlfriend and another friend) and the UK is fast approaching the same levels and types of sickness that characterise the US ... i.e. diseases of a rich developed nation.

Its pretty scary if you look at health metrics....because many low-tech nations (not really 3rd world but not developed) have much better life expectancy and infant mortality.

I do have a theory but I think its a bit "conspiracy" but not really conspiracy.

Basically I think we are trained to eat what is easiest to produce, store and transport in bulk.

Of course marketing and advertising play a huge part but I think it goes beyond this.

Firstly economics has shut out the small producers, its cheaper to mass produce and the efficiency increases as you own the whole chain from growing through transport and distribution.

The competition is virtually non existant..and what there is is between big name brands and mostly over cost not quality. Living in France gives me a different perspective since the French like to preserve their "traditional" way of life and protect small farmers and producers though this itself is falling due to restrictions placed on protectionism.

Just stop and think at this point for a minute... sure we were all taught protectionism is BAD... and that the market can decide but its this what we really want for food! Do we want the most efficiently produced food of the lowest acceptable quality? This isn't cheap access to furniture or automobiles it is what we put in our bodies.

Even more sinister is lobbying....what makes this so bad for me in relation to food is the need to drag everything down to the lowest common denominator. So when mass produced food has health risks (like battery eggs) legislation is brought in but this legislation applies also to the free range chicks... the same for pasturisation of milk, instead of guaranteeing the herd doesn't have TB its cheaper to process ALL milk. When like in the UK cows are being fed a feed based on dead cows (amongst other stuff) and pumped with antibiotics the measures taken against this are applied against small farmers who have taken great pains to organically feed their herd of 50 and know them all by name.

I was watching a TV show the other day where the mother comes in for the "family dinner" she has demanded everyone attend and I'm thinking wow what a great kitchen, then she pulls a ready meal out of a bag.

I dunno, I posted some WHO figures the other week showing life expectancy from 1960-2000 in different countires and on the whole those that were doing best in 1960 have barely improved today whereas some of the 1960 lower figures have vastly overtaken the over-developed world. With all the advances in medicine places like the UK and US have dropped steadily in rank and increased life expectancy a tiny amount whereas countires in the carabean have overtaken and left us standing and France, Italy and Spain etc. (what I call food culture latin countires) are still way ahead...

Evie.... good luck

On a personal level just when I start loosing faith in humanity I read your post and it lifts me that your first action is to help others.

On another level although osteoporosis is slow to recover from you will see enormous effects from being gluten-free.

My mother was 65 when diagnosed and looked 75 .. she now looks 5 years later 65.... she literally looks SO MUCH healthier all round.

Angie -- thank you so much for looking that up. I'm not in much of a state to think clearly -- I simply freaked out when I found out about it. Ashley has Asthma that is SO difficult to control . . . at age 20 she still has to take her peak flows twice a day, and is on a myriad of asthma preventative meds. I think that is why they want her on the INH for so long . . . . .

I am a little more comforted that the CDC said that most latent TB doesn't become active. They just did another blood panel today -- forgot to even mention that -- if it shows that the TB is active, then all of us will need to be tested for TB, she will have to wear a mask for a week, I think, and we'll have to be treated if our levels are high . . . . I don't know when she'll get that info . . .

Thank you so much for looking that up.

gfp -- Thank you for the information -- I think it's really important . . . I'll call Freeda and order the B6 to make SURE that she takes it. I already have peripheral neuropathy that is BAD -- I don't want her developing that. She is already anemic -- I'll need to get iron supplements, as well. She knows about the alcohol, but she isn't much of a drinker, thank goodness.

Carla, Patti, Metta everyone . . . thanks for the prayers . . . . I appreciate that very much.

And Vit D...

I'm completely serious if my antibodies can help..... CarlaB will curse you of course since she will have to live up to her promise and fiddle-faddle would get called in for some good ole chicken soup....

Its so weird, I never considered my natural immunity much .. apparently its genetic .. I guess I know I have weird genes...

I am a little more comforted that the CDC said that most latent TB doesn't become active. They just did another blood panel today -- forgot to even mention that -- if it shows that the TB is active, then all of us will need to be tested for TB, she will have to wear a mask for a week, I think, and we'll have to be treated if our levels are high . . . . I don't know when she'll get that info . . .

Its very unlikely to be transmitted without accompanying lung symptoms.... its practically impossible except through direct blood transfer. Put this to the back of your mind...

From what she said, the meds will make it stay latent for now, since her tests were so high . . . She will always have latent TB, and will have to have chest x-rays each year for life . . . . I THINK that's what she said . . . I got so upset, that quite frankly I don't know if I have everything correctly.

Well luckily I come from a high TB area (and curiously am immune naturally??) but firstly the drugs for latent TB are nowhere near as bad as active TB so I can partially return a favour.

According to the WHO TB is considered cured after 6 months of treatment with special antibiotics BUT there are side effects.

The most important is to take B6 suppliment and LOTS of it.

Avoid all alcohol and watch for aneamia and peripheral neuropathy. (sorry...)

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No point me quoting from here....

Make sure you get the liver function tests.... obviously. AGE is important...

I'll try and look into natural immunity.... I know this is along shot but if I need to get a biometric passport ....

.. I'd be happy to do whatever I could but it seems to be a genetic immunity from what I can scratch up quickly.

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Bear in mind I was also immunised ... since they didn't know what else to do....

Cripes I never considered... perhaps my leukocytes can actually help someone?

edits:

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Vitamin D crucial in recovery....