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gfp

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  1.   frenchiemama said:
    I never went through denial. I didn't like it, but I could clearly see the damage that gluten was doing to me physically. Since being diagnosed on April 21st of last year I have never once eaten gluten intentionally.

    In any case, comments like this "I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc." really rankle me. If you don't want to take celiac seriously, that's your business. I do take it seriously. I am also very, very tired of people thinking that I am being picky or a hypochondriac.

    The question really is do you eat out? Do you have gluten in your house?

    I notice you say intentionally which leads me to beleive you have been caught out?

    I started off eating bread wioth the gluten free logo which passed the 200ppm test required in the UK. I took medical advice that this was safe.and would be fine (which turned out to be wrong).. I took my food and ate it in dangerous places (like at work when someone else may have dropped crumbs on your desk and I have risked things that have had "natural flavouring" on the packet.

    .. and I have come to the conclusion... as you that

      Quote
    "I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc."
    is not even close to gluten-free.... heck, I take risks from time to tinme but eating a burger that touched a bun? That goes out of the realm of playing russian roulette and into playing russian roulette with six bullets and going first!

    I am now fastidious about washing my hands before I eat, not touching my mouth when im out in case for instance my train ticket goes through the same machine as someone elses who has been eating gluten... because it took me time to learn that 100% gluten free is not eating something out of any tin or packet ..

    I buy my meat by the half cow/sheep and butcher it myself because no butcher is gluten-free... a lot of them eat sandwiches and handle other products that contain gluten .. all of this is paranoia .. right?

  2.   Canadian Karen said:
    I agree, gfp. We all agree that there is a lengthy process (i.e. grieving, denial, etc.) to go through before we get to the acceptance point. I am sure that doctors are no different. We all deserve time to let things sink in, and we all have to remember how difficult it was in the beginning to grasp the severity of this disease.

    Karen

    I have yet to know a single person that has gone all the way gluten-free... (not just the eating stuff that seems to be OK) that didn't first go for denial...

    hands up anyone who was going to be a "not too sensitive" , I remember I was going to be OK with oats and I was convinced I was more of a borderline celaic...

    ha... was I wrong... indeed I now doubt a borderline celaic exists, just those who have gone for the full gluten-free and those who have cheated or allowed themselves to slip.

    I realise that sounds harsh but find me a single person who has been 100% strict for 3 months and has not decided afterwards that the tiniest amount gives them some symptoms, even if they are not gastro ....

    I fid celaics are firmly divided in two groups, those who tried and those who don't have symptoms. Perhaps its biassed and only the worst afflicted ever try a FULL gluten-free diet but I'm waiting for responses on this on track of the original thread.

  3.   frenchiemama said:
    To me it just seems like you came on here with your mind already made up. Just my opinion.

    Yes but to be fair he has been flooded with information, you can't expect a MD to just accept it all at face value and what you or I skim or read quickly and extract what we understand is more work for a MD that needs to look into deeper implications and digest it a lot deeper, not to mention cast away years of misconceptions.

    He is bound to want to check the medical journals and there is a lot of information, a lot of them contradictory!

    When you think we came to it from the symptoms, most of us had never heard of celiac disease before we or a loved one was diangnosed whereas an MD has forget to get rid of years of knowing about a extremely rare disease only children get (as it were)

  4.   debmidge said:
    Dear Friends

    I want to install Gluten Guard but it requires

    1) Drive Space of 85 mb of free space

    2) memory 256 mb

    How do I know if my computer has enough of this space? Where do I check?

    I am computer illiterate and desperately need to find this out before I purchase the program. I have no one to ask as my family is worse than I am when it comes to computers, many of them refuse to even get a computer. They'd rather work on cars or cook or exercise or play bingo or raise their children, etc.

    Thank you very much

    Debmidge

    Assuming you are using windows not a mac ..

    On the desktop select the my computer and then right click and see properties

    In the 'general' tab at the bottom will say how much memory you have.

    Cancel this and then left double click on my computer, you will have a 'lcal disk c:' icon, right click and select proerties again, this should tell you total space and the amount free underneath.

    Get back with any questions

  5. Hey you just happen to have found yourself in a group which have a lot of bad experiences.

    I myself have a particualr problem wih Dr's which is that I'm a scientist and I find the phrase medical science to be an oxymoron but many of my friends are MD's, I just wish they would be as accepting of my condition as the friends that are not :P

    Serously you will find a lot of people here who are angry, depressed and post things they later regret; it is not co-incidence. ;) but an effect of being glutened. Non of this os personal against you.....

    I don't really want my Dr to be a scientist but just consider, Lister is regarded as a bad example to the medical profession but he was a good scientist. You are now in the position of Warren! Its unethical to experiment on a patient ... but not yourself.

    What I can say is if you want to try this (and I am an incurable scientist so I can't help poisioning myself from time to time to gague the reactions) is you will only notice it once you can see clearly again, to use the spectacle analogy.

    Millions of celaics get advised a small amount is OK but just read the codex alimentarius definition of gluten free (though its not used in the US) . Does it seem logical to set a 200ppm limit for items containing starches and sugars derived from gluten containing grains yet set it at 20ppm for those naturally gluten free?

    Is residual gluten from wheat starch any less toxic than contaminated gluten?

    As a rhetorical second question, why is the concentration of gluten controlled but not the amount. If I eat a 10x the amount of 10ppm gluten food is that the same as 1x the amount of 100ppm?

    In the McDo statement they advise that the gluten is broken down and quote gliadin equivalent of 3% ... the general public might not see the significance of this statement (indeed I guess they are not intended to) since durham wheat has a ratio of 0.8:1 gluten to glutamines but this then makes 7% gluten equivalent. Nor does it address the fact that they claim they heat breaks down the gluten, sure into the gliadins and their component amino acid chains.

    I know of no research that tests for the relative damage of pure glaidin vs glaidin locked into a prolamine but common sense tells me that the pure glaidinis likely to be more of a problem mg for mg... certainly in the absense of proof I'd rather play safe, as someone else said how many cigarettes a day are OK?

    Another example is spirits, since the prolamines are by definition soluble in alcohol does a low concentration in an alcoholic beverage do more or less damage? What happens to the prolamines when the alcohol is processed?

    Maybe we should add paranoia to the list of associated symptoms because at times it appears the world is out to get us ;) or to quote douglas adams, is that just perfectly normal paranoia?

  6.   radman said:
    As a newly self diagnosed (by diet response only) celiac, I have been surprised by how some treat it like an allergy-- making people change gloves, not allowing a bun to even touch a burger, etc.

    I have been eating tons of gluten for every day for years and living with the consequences (moderate symptoms, primarily loose bowels and low grade malabsorption). I find that that all magically goes away with simple avoidance of gluten containing foods.

    However, I assume some others have much more severe reactions, thus the strict avoidance and worry for cross contamination, etc.

    Are there others like me, with very troubling, but less serious reactions, that don't have to worry quite as much? An example would be, say, Kellogs Corn Flakes or Rice Crispies. These are flavored with a small amount of malt flavoring (made from barley). I've been eating those and so far I don't think they bother me.

    Or am I just risking trouble?

    The way I see it the only real trouble is the concern for maligancy due to long term inflammation in the small intestine (I happen to be a cancer doctor). A little malabsorption now and then won't lead to serious nutritional deficiencies or osteoporosis (if very occasional, I'm not suggesting to constantly eat small amounts, just not to worry about tiny amounts or a rare slip up). And as far as intenstinal lymphoma caused by untreated celiac, well I have only seen a handful (less than 5) cases of intestinal lymphoma in 15 years of practice treating only cancer. And I doubt all of these patients had celiac as a cause. So I would say this is a very rare complication, given that there are thousands and thousands of undiagnosed celiacs walking around untreated.

    Sorry for the ramble but I've been wrestling with these issues. So how about it, any others who have milder forms of celiac? What do you do?

    I don't know a better way to do this except being blunt. I don't mean to be rude but shuffling around the issue will just confuse you more.

    If you search these forums you will see plenty of references to 'brainfog' (just do a search). The problem is this is very much something you discover after you have been 100% gluten-free for a while (the time depends on the person, thier age and how long they have been gluten-free). This is a matter of faith because neither myself nor others will convince you that you feel normal, really noone would have convinced me either. The best way I can say it is its like an alchoholic who wakes up every morning and doesn't know what it is like for everyone else. celiac disease progresses slowly and many people put many things down to just getting older .. working too long hours or 1001 other causes. I honestly think you cannot see this (and I hink others will support this view) until you come out of the other side. Its perhaps like someone who has very slowly needed glasses starting to get headaches but continuing because they can see OK, then one day they get their eyes tested and a pair of glasses and suddenly they realise how much their eyesight deteriorated and the small print suddenly looks crisper and the sign board it the distance easier to read.

    You may perhaps not be affected but my experience is those who do a 100% gluten-free diet for 3 months nearly all find they suddenly feel better and ailments they had just thought were part and parcel of life have dissapeared. A common one is allergies to other things, my hay fever dissapears almost completely if I'm 100% gluten-free and my allergy to lavender dissapears to a mild irritation.

    There is plenty of good research showing neuroligical problems associated with coeliacs eating gluten.

    There are links to diabetes and thyroid problems and also lesions in the brain ... In the end the intestinal reaction is just one of many. I and many celaics I know have found their intollerance is at different levels. If I eat very low amounts of gluten I might not have any intestinal reaction however the brain foig appears, I get snappy and my allergies return. A little more and I start getting migranes again... something going from being disabled in bed for 2-3 days a month to NEVER when Im 100% gluten-free.

    The problem is you might not get migranes or hay fever but you might have other symptoms because the gluten messes with your immune system .. the effects vary person to person so me saying do you feel XXX is not helpful.

      Quote
    I happen to be a cancer doctor

    Then you may wish to read some of the medical works on peripheral conditions.

    I feel a little like teaching my grandmother to suck eggs ... but you know well Dr's make the worst patients!

    Please at least look at these

    Open Original Shared Link

    specifically

    Open Original Shared Link and other works of M Hadjivassiliou.

    I have two reasons for this...

    1) A genuine concern for your health

    2) You are a very valuable resource..... ahem we need MD's to start recognising these conditions.

    Just search brainfog on this forum or ANY celaic forum... its consistent, the descriptions are the same but the medical community on the whole dismisses it.

    Many celaics have been referred to psychiatrists prior to diagnosis and even afterwards we struggle to get recognition of documented complications. Indeed the 'charity' purporting to represent celaics in the UK recently wrote an article dismissing depression in celaics as "we are just upset we don't have the same food choices"

    Pleae at least take the time to review some of the articles in the link, it is possible some of the people read the symptoms and try hard to find them in themselves and even perhaps that some suffer Munchausen syndrome but the overall weight of evidence tends to add credibility to our claims.

    In summary, you won't know unless you try.

  7. Gluten Free safety in Europe is as diverse as the cultures and languages.

    It ranges from excellent to non existant depending where you are.

    I live in Paris and have a website specially for gluten-free residents but also visitors to Paris but I can't say France is very good for coelaics at all.

    Italy, especially the North is much more aware and gluten-free is really taking off in the UK. You have to be very careful of how each country defines gluten free, many take the codex standard of 200ppm and I and many others I know are ill at this level.

    Specific allergen labelling came into Europe in 2005 I think but its adoption depends on the country. I have personally bought and been ill from items with no possible gluten on the labelling. I have also tested several of these with the tepnel home test kits and found several not only to contain gluten but high levels.

    I cannot find a single cooked sliced ham or chicken in the whole of France that is gluten-free. Many state "dextrose du ble" on the label or "amindon modifie'" (wheat dextrose and wheat starch) but others just say "amidon" or "arome naturelle" .. starch or natural flavourings. All I have actually tested have contained gluten.

    The EU rule is they vcan only write starch if its non allergenic .. the truth is they don't care.

    So in summary, try and get LOCAL advice from someone. (if anyone wants the template or help to set up a gluten-free local support site ask me) because LOCAL advice is tested... and in the South of Europe rules are .. well taken to be optional guidelines sometimes :D

    Much of Northern Italy speak English as a second language and very well and the same goes for Spain. The very Southern part of Italy, especially Sicly I found French equally useful. France, well many younger people learned English at school but they are not confident. If you practice your bad French it gives them confidence and they are then useually delighted to have a go at helping you in English.... I found the Spanish and Italians equally delighted if you try ... and have even been wih a friend who managed in classical Spanish in Northern Spain with a helpful guy who spoke as classic Italian as possible... we only stopped for directions but we ended up parking up and joining the guy for a drink whivch he insisted to pay for!

    Northern Europe, especially Scandanavia love rules. The danger here is that if the limit says 300ppm they are likely to add gluten to get to 299ppm... such is the mentality. I lived in Norway for 2 yrs and 50kph means 49 kph and a whole trail of cars will be exactly 1kph under the speed limit. This is regardless of weather condiitons... so you can have 2 feet of snopw on the road and they will still go at 49kph if the limit is 50!

    However unless you venture in to the deep country you are unlikely to meet anyone who doesn't speak perfect English. They are also somewhat time oriented and I was told quite rudely (by Southern European standards) several times not to waste peoples time with my bad Norwegian!

    The UK, Netherlands and to an extent Denmark (though classed as Scandanavian) lie somewhere between the two. The UK expect everyone to speak English, if you don't they will just shout at you louder. I remember directing some French tourists in London in French and the almost dropped dead with surprise.

    The Netherlands and North/Western Belgium speak English so well it makes me embarassed however they seem equally delighted that you try the language and I have never had the same "Speak English and stop wasting my time" I had in Norway. I am usually self concious asking someone if they speak English in their own country and presuming they do is even worse but I never felt this in Holland. They smile and the Dutch tolerance kicks in and they seem to have all the time i the world to help you. Im of to Bruges this weekend for a Silver expo and it will be strange asking for things in English since my Dutch is non existant ...

  8.   floridanative said:
    sasha1234 - can you please advise of any restaurants in Paris that are friendly to Celiacs - if there are any I mean? I'm getting a little nervous about an upcoming trip that we decided not to cancel since it's been planned for two years. I'm taking a whole extra suitcase with gluten-free foods but I have to find out exactly what France allows in the coutry so it won't be consfiscated. We'll be in Paris for a week in the spring. Any tips you can offer for me to explain my dietary restrictions competently in France would be greatly appreacited as well. Thanks in advance if you can help! :rolleyes:

    You are unlikely to have any problems importing personal food. An exception at the moment is chicken for obvious reasons but that is hardly going to affect you.

    Naturalia have an online ordering service for basics, you could try ordering in advance and have them delivered somewhere.

    Open Original Shared Link Have printable cards explaining Celaic disease in French...

  9.   JessicaB said:
    Well as you can see on my signature, i just recently went to georgetown university for a second biopsy. Well it came back negative no damage! Once again i was told since my bloodwork came back positive, i prob have celiac, well guess what, prob is not enough for me. I told my doctor that i want a diagnosis! He said in order to diagnose me i would now need to get the bloodwork done again to see another positive result. Should i get it done again?

    Also... I dont have any friends who understand my weird cravings, my sudden attitudes, my upsetting moments. Ive been gluten-free from dec to jan, off the diet from jan to feb and now back on forever! I would like to make some close friends that i can talk to, mail letters, call on the phone. Does anyone feel this way. I just wish i had a few friends that i could pick up the phone and say hey how was your day and just vent to.... Well my email address is mckaylaslove@aol.com.

    Maybe anyone who has anything else in common?? Im 22yr old female, live in Maryland. One beautifull daughter, 20 months old, McKayla, married.

    Please let me know and tell me a little about your experience, diagnosis and personality,

    Thanks!!!!!!!!!!!

    Well I couldn't be less like a 22 yr old female living in Maryland but I can certainly sympathise.

    You are still young so perhaps your villi are still fighting back faster than being destroyed, perhaps you didn't eat enough gluten prior to the biopsy? Either way chances are you can continue making yourself sick until the biopsy is good enough or just accept the fact, its not like you are missing prescription medication...

    My mother is biopsy confirmed but I only got blood work which was +ve...

    I went gluten-free and have no intention of going back for a certificate, that prevents me being officially celiac in the UK but so what... I feel 10x better and if I slip I know in a few hours.. that's enough for me.

    If you are lucky enough to have your villi still and its not a poor biopsy interpretation or you didn't eat enough gluten then good luck to you...

  10.   floridanative said:
    sasha1234 - can you please advise of any restaurants in Paris that are friendly to Celiacs - if there are any I mean? I'm getting a little nervous about an upcoming trip that we decided not to cancel since it's been planned for two years. I'm taking a whole extra suitcase with gluten-free foods but I have to find out exactly what France allows in the coutry so it won't be consfiscated. We'll be in Paris for a week in the spring. Any tips you can offer for me to explain my dietary restrictions competently in France would be greatly appreacited as well. Thanks in advance if you can help! :rolleyes:

    edited to comply with board rules

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