gfp

  NWLAX36Mom said:

The other day I was eating gluten-free pizza for lunch a work. My boss came in and said, "Oh, is that on your diet?"

I know it is dumb, but it really ticked me off. I can handle my own diet restrictions fine. Further, I just don't think it is any of his business. If I want to cheat, that is my prerogative (I'm way too afraid to cheat) Just wondering if I am super sensitive or other people ever feel the same way.

Thanks!

I understand why it is annoying and you just have to put it down to people not understanding.

The problem is we need to actually make our condition known because of the social side of work... well you don't have to but it looks funny when you refuse the free meals or drinks etc.

As to his business? That's a toughy.. I can't speak for you but eating gluten would definately affect my ability to work...

which does make it his business.... in so far as you might be ill or you might not be functioning 100%...

I agree its not really his business though... but I think its one of those grey areas we will see differently than non celiacs.

Wow,

That's definately as tough one...

I'd have thought bringing one in Fresh is going to be really hard unless ypou did have any guests arriving the same day ?

Perhaps you could actually try some of the catering companies ? If your thinking of a buffet as well being gluten-free then you might be able to get them to find a pastry chef that would do one...

Alternatively I can also ask some of the professional chefs I know if any of them know a pastry chef that would be able to do it...

The hard part is actually someone with enough experience baking gluten-free.... since as we know most stuff for baking isn't as simple as using a gluten-free flour instead of regular...

Another option might be to find somewhere in Italy that can send it overnight delivery...

  Happynwgal2 said:

OK, thank you for helping me understand this better. Then why is there a link to buy a membership even though it doesn't work that way?

Its just a part of the software that Scott uses to power this board...

I guess it just comes that way...

  lovegrov said:

While untreated celiac does increase your chance of certain types of cancer, it's not inevitable or even a huge chance. The main threats come from other complications, such as nerve or heart damage, malnutrition, anemia, osteo, brain problems, and developing other autoimmune conditions, just to name a few. Some of these complications can also kill you; others make your life miserable.

richard

I think people do tend to obscess over cancer.... when many of the other complications kill you just as surely and others take away most of the pleasure of life..

On the other hand I think a bit of whatever works for you is OK so long as people don't just look at the big C and dismiss it and not realise they are far more likely to have other complications...

  Tim-n-VA said:

There are subtle and major differences in how all of us react to gluten. At some level you have to figure out what works for you. My doctor and I discussed this and we decided that the solution is avoid eating gluten, to be careful but not obsessive about cross contamination (I didn't buy new cookware or a new toaster) and monitor antibodies via blood tests. Over the 8 months my levels have dropped from over 100 to 9 to 3. I see him again this week and we will evaluate and adjust.

The point isn't to ignore those other factors but to somehow find what works for you. If your medical/financial situation doesn't allow for frequent lab work, you'll have to adjust. Symptoms alone aren't generally sufficient to say there isn't a problem but are a good indicator that there is an issue. At the same time, without strict controls (as in formal studies), you don't always know if you got mild food poisoning from spoiled shrimp or accidental gluten from shampoo. Obviously just an example but we are constantly eating, drinking, breathing, etc. and anything entering your body has the potential to carry things that make you sick.

Tim, this all sounds logical... I'm not faulting the logic...

The problem is you have never actually been 100% gluten-free and that "tell" is highly subjective and personal but it really happens.

Its not something you can explain to someone who hasn't experienced it...because words just don't describe it.

I started off with your attitude, indeed I decided I was going to be OK on oats and just needed to avoid the big stuff.

I did get much better but I kept having mystery "gluten like" experiences...

On the whole I felt much better all round but I kept having the odd bout of diarrea. At this point I hadn't linked other sysptoms to gluten but they included depression, migranes, joint pain,some peripheral loss of feeling and what we call brain fog.

My GP put the D down to IBS... and it was still something happening more than once a month...we didn't rerun any tests but I would guess that my antibodies were down near normal...

I specifically remember the night I though screw this... it followed a very embarassing incident in a bar waiting for the toilet and it was the end of a totally crap week where I had been feeling sicker and sicker...

I threw away my underwear, returned home to clean myself up and got in the shower and grabbed the shower gel I'd been using all week since my supply ran out and I ended up using an old present from an aunt.

I was really upset and then reading the bottle I read "enriched with wheat protein"...

That was it for me.... up to that time I had tried sharing a kitchen and stuff as well. This made me decide to go the whole hog.

After about a week I felt better than ever and continued improving for 2-3 months... my joint pain I'd put down to older age ... and loss of feeling to probably something I broke as a kid... migranes I hadn't actually realised I could not have...

Now if I do get glutened, even CC I can tell because I just feel different...

So it is not something I think anyone can explain to you unless you try it...

If you ever look into real soy sauces its incredible....

There are well over 100 major kinds of soy sauce and thousands of sub-types...

Which is to say I gues that one soy sauce isn't likely to work for evertything...

Read more here but be warned... its long

Open Original Shared Link

  Nantzie said:

We have really pretty bike trails that wind through the wetlands near our house. The other day a family was feeding bread to the ducks and it got me wondering.

Does anyone know, with all the alternative flours we use, if there are potential problems with feeding ducks or geese gluten-free bread? I'm guessing bread isn't terribly healthy for them in the first place, but I'm just wanting to make sure it wouldn't harm them. I'd hate to do it and find that soy flour is known to cause serious problems or something.

Nancy

Just off the top of my head from instinct ... I don't see any problems why though I can't imagine soy flour would do them much good.

  ravenwoodglass said:

Medicine in the US is profit driven, there is no profit to diagnosing us because then we don't develop all the autoimmune disease and cancers that keep that profit margin up. I expect as more folks realize that they are effected by gluten prices will continue to go higher to make up for all the folks like me that no longer contribute thousands of dollars a year to their kitty. Prediagnosis just for copays alone for doctor visits, specialists, and scripts for toxic drugs we paid over 17 grand a year..just for me. Now we are 'lucky' if we hit the deductable.

I think that summarises the differences...

If you have public healthcare then the state has to consider the costs of treating you for complications.

However its not perfect since the complications of many things are longer term than the presently elected govt. setting the budgets. In some ways a private insurance should be more interested but the flaw in that is they might just raise premiums until you can't afford or people change job and go onto another scheme....not to mention how do you pay the premiums once you retire?

  j_mommy said:

I would like some opinions!!!

I'm newly diagnosed and every dr I've talked to says I do not need to worry about products I'm not ingesting. I work in the healthcare field and deal with Dr's other than my own and they all say that. Do I just have to wait and see how they affect me or do alot of people have problems with unedible products(ie shampoo, soap ect!) Please let me know what you all think!!!! Thanks

Well other than the fact many people do react topically as ursa mentioned there is ingesting and accidentally ingesting.

Its practically impossible IMHO to wash your hair "normally" and not ingest "some" shampoo. Sire if you make a special effort and keep your lips firmly closed (not that easy under a shower) and don't breath any up your nose ... but its a daily activity... half the time one we do half asleep... and thinking about other things...

And if you have long hair and it gets in your mouth ...

The same goes for soaps etc. if your washing your hands in soaps containing some gluten at some point your going to touch something goes in your mouth, be it a pen or food...

The way I look at it many toxins are not dangerous unless ingested but that doesn't mean I'm going to shower in them!

  dally099 said:

wow, i know im going to get slammed for this, but why would anyone want to live in a country where health care isnt paid for? and why would any one reelect a presidant who dosnet even pretend to care? dont get me wrong canada is by no stretch perfect, we have horrible race relations here as well, and people who collect welfare their whole lives at the cost of tax payers, but when i need stitches or had allergic reactions that brought me to the hospital over xmas i never even hesitated about going. i cant imagine and my heart goes out to those who struggle trying to pay off medical bills, and for those who have to learn how to do stitches on themselves to save the cost of a trip to the ER.

Erm... I was thinking along the same lines, just in a different way....

I was sorta thinking I'm slamming Italy's ER for a 6-7 hour wait on something non critical but at least it was free...

I do have to say though last time I was in AB healthcare it was with a friend and a genuine emergency and until I released the heavy bandaging put on by the medics and he bled all over the floor...

The ER dr. in Bannf managed to wash the wound out and do 3 layers of stitches which subsequently became infected and he had to go to the foothills hosp. everyday for IV antibiotics... though it was free.

I suddenly felt a bit guilty reading the posts of TinkerbellSwt and others...

  Quote

and why would any one reelect a presidant who dosnet even pretend to care?

Same reason he doesn't care....

If you have a good job and great insurance its not so easy to pretend to yourself everyone has the same chance...

Many people go through life without expensive medical bills... then you read TinkerbellSwt and others... and think wow.. its just an "accident" at birth..

For many years even though the UK system is not so bad I had company paid medical insurance for 100% and never used the public healthcare. I think there is also a huge and not incorrect perception that the US public healthcare system is inefficient.

The healthcare costs per capita are similar to France and almost 2x the UK...

The UK system isn't great... you can easily die on a waiting list and antything considered non life threatening is increasingly difficult to get...and even then med's are restricted based on cost.

The UK for instance won't pay for many cancer treatments that just extend the life of a terminal patient or impriove quality of life for that time because the funds are limited...

France has unlimited medical cover .. it just works completely differently...

The public health system is mainly privately owned... and forms a basis of the private medical system.. That is you can't opt out 100% .. private insurance tops up what isn't covered because its not critical...

My gluten-free just got her new glasses for about $500 (Armani) and renewed her disposable contacts.. she can get FREE glasses and free hard contacts on the public system so they just take the price off for what the state considers and the rest is charged to the insurance..

Anything critical is covered 100% regardless of cost... If I do say so myself it works very very well.

I do know a lot of rich French people though who resent paying for others... in exactly the same way... They figure why should I pay tax because this guy was born with a congenital heart condition ... Also just because of the nature of the peope I know, many spend a large part of their lives abroad on private healthcare ... and resent paying tax for a healthcare system they are not using.

So partly l I think if the US public healthcare actualy worked much better more people would be happier about paying for it... but it will never be everyone.

  brizzo said:

Check out this clip from "The View". The Dr. actually mentions Europe in relation to gluten-free resteraunts, ect. It's twords the end.

Open Original Shared Link

LOL... very briefly but that video is well worth watching anyway...

Italy is probably the best place...I have been to and I travel a lot..

You can get gluten-free foods in pharmacies but last year they had adverts for a new a chain of gluten-free supermarkets ...

Diagnosis rate is 1:200 so awareness is very high... almost any resto is going to know about it.

Even little ice cream shops tend to have gluten-free cones

The Italian celiac organisation has lists of resto's in almost every major town...

Open Original Shared Link

Also a NEW service.... IN ENGLISH... by them (they really are incredible)

  Quote

FROM THE ITALIAN CELIAC ASSOCIATION

TO ALL CELIAC ASSOCIATIONS WORLDWIDE

The President and the Steering Committee of the Association of Italian Celiacs are delighted to announce this new telephone information service - also available in English

  Jo.R said:

We are a family on a budget, but we have a savings for things like this, so it isn't killing us financially. We have insurance, with meeting the deductible and our % we still have to pay most of it. Since we met her deductible this will be a good year to have her tested for Celiac.

gfp: if it were me or my husband we would not have gone to the ER. I probably wouldn't have gone if it was on another part of her body, I'd just use butterfly band-aids and take her to the doctor (which is covered 100%) on Monday. It being on her head, I felt she should be checked out right away.

Nope your probably right .. best not to mess with the head and have her checked for concussion or other damage...

Reminds me of my brother when we were kids... when he hit his head sledging into a wall ...

The scalp also had a lot pf potentail for bleeding A LOT....

On the whole ER is a rip off but then so is paying someone to remove the oil from your car and change a filter...

Sometimes you just have to be pragmatic and have some savings

At least right away probalby means nearly that... last ER I was in was in Italy and they forgot to give me anaesthetic before trying to dig out a bit of metal stuck through my fingernail....

Once again I could have done this myself... I did try and decided anaethetic would be better.... spent about 6 hrs in ER managed to get a shift change and the 2nd Dr. thought the 1st had anaesthetised my finger ... so just to cheer you up ...

Im there on an operating table with them sticking tweezers through my nail and digging about with a dictionary and phrase book trying to work out the conditional tens for anaesthetic...

Funny thing the nurse came for a follow-up tetanus and was concerned about it hurting...

I had to laugh... someone spent an hour digging about under my nail and she's worried a tetanus shot will hurt...

Wish I found her earlier... first person who spoke any English ...!

For me I generally wouldn't risk it but if its an option of eating something or not then I probably would...

Anything on shared lines is pot luck in a way but if you only try that luck when you need to the risk is minimsed...

  num1habsfan said:

Yup it still aches. and yesterday rained so arthritis could be the cause of the ache. it's kinda bruised too. I'm pretty sure its out of place because I remember when i first hit it, it felt like someone moved my kneecap. and yes, still swollen from the knee down. But i mean i can live with the pain, because my stomach pains are a million times worse than a maybe dislocated knee

~ Lisa ~

If it doesn't hurt that much constantly its unlikey to be dislocated..... dislocated joints REALLY hurt...

fractures don't though... but anything around a knee or elbow always has pontential for pain....

If it hurts to straighten it don't for now... if its inflamed all sorts of things can be pressing on nerves and anything increasing the inflamation will make it press harder.

I'd definately have it checked out.... knees are funny and full of little parts that can be damaged but of you can't until Tue. then try and keep it as immobile as possible and aleviate as much swelling as you can with ice.

just my 2c..

  Jo.R said:

My 4 yr old hit her head and had to go to the ER for stitches (inch + long and all the way to the skull). She is fine, a little trooper. Well I got a $400 ER bill. I paid it and thought that was it. I just got a $485 bill from the ER doctor. The doctor is a separate bill. He cost more than the ER! It was the ER nurses that did all the work. In three hours the Dr. spent less than 15 min with my daughter. That's nearly $2000 dollars an hour. All he did was stitch her up and at that point she was numb enough I could have done it. Can this be contested or something?

I'm going to get slammed for this....

I'm not telling anyone to do this themselves but even though ER is free in the UK and France I just do my own stitches when I need them so long as they are a single layer....

In more complex situations you can need more than one layer of stiches so that some are internal and some external...

If this is the case then you can't do this at home... without severe risk of infection...

The last stitches a Dr. actually did on me are a real mess... I really could do better... so now I just do... finding the equipment is the hard part...

You need a combined liquid antispeptic that also removes dead flesh I use a Open Original Shared Link spray...

(You need to make sure your not trapping any dirt inside... !) and lots of boiled cooled water to get it really clean and a mercurochrome antiseptic after... if pain bothers you then you can get these with lidocaine hydrochloride included...

My Doctor and also a friend who is a vascualar surgeon both tell me I shouldn't do this and of course you shouldn't....

However both of them recognise I hate hospitals and it will either not get stitched (unless I'm really dying) or I suspect I have something embedded in the wound and tenetively say if I'm going to do my own then at least do it properly...

My current antiseptic was given to me from my GP when I said she can send me to a surgeon but I'm not going ....

(although that wasn't for stitches but a huge cyst {incidentally I beleive gluten related} I lanced myself but couldn't actually get to properly... in the end she just gave me antibiotics in case of infection and the anti-septic with lidocain and managed to get most of the fluid out herself) .. The funny thing was I hadn't gone to my GP for the cyst anyway... she just spotted it when I had to take my shirt off!!

So like I say... not to be tried at home... do as I say not as I do! But if you do decide to disregard medical advice (as I do) then do it right and make sure you have an up to date tetanus! And if it gets infected be ready for a real talking to from your Docter!

edits

  Quote

be thankful they didn't have an anesthesiologist on call to give her the numbing agent or he would be billing you too.

This is IMHO not that simple....

The blood tests were -ve... but they are unreliable in toddlers anyway...

A biopsy is likely to be -ve as well...

At least the blood tests are pretty minor... and hence can be repeated... whereas what would you do if you also have a -ve biopsy knowing they are unreliable and esp in toddlers.

I honestly think far too many people stress out over the size of their kids...

  Quote

The general rule of thumb means that your child would be in a height range of around 5'6 with parents of your heights, the average height for females, so she should be much closer to the 50th percentile height range. My sister who is actually smaller than you (5'-3") was always around the 50th percentile in growth (plus or minus about 20% at times) and never below 10%.

Both my brother and I were in the lower 10% throughout school. My mom is 5'2" and my Dad 6"1'...

I'm 5'10" now and my bother 5'11"... I have celiac disease he definately doesn't.... (as both my mom and I do he's been thoroughly tested)...

The thing is we were in the UK 10% in the 70's.... the fact is today that a UK or US child in the upper 50% is statistically very likely to be obese... in later life.. (not because of this... )... What I mean is that those percentiles are taken from the general population and a very large proportion of the general population will end up being obese ...

I don't know if there are actually any figures available for "a healthy population".... that is removing all the figures collected on growing kids and then throwiong out the ones who are clinically obese by the age of 30.

(there actually might be in the ALSPAC study)...

Now the question is did my undiagnosed celiac disease stop me being 6'1" like my Dad? Given my brother is only an inch taller?

However... more importantly... does it matter in the slightest... what if I had turned out to be 5'6"...??? erm sure it cuts down employment opportunities for being a professional basketball player but in what other ways might it limit me???

It seems your medical "team" (GP, GI, PD) can't decide...?

So they took the easy option.... tests are -ve...

Its really not going to hurt one bit putting her on a gluten-free diet...

The crankyness... I sorta disagree about it not being relevant... that doesn't mean it dismisses celiac disease... but at least having a GI that recognises this as a symptom and doesn't just slavishly say the biopsy is all that counts is at least a start...

  Quote

The expense of a lot of these products is scaring me to death.

It really doesn't need to...

My gluten-free costs for eating at home are not really any different...

90% of what I eat is just fresh fruit, veg, meat, fish.... Maybe once a month I might have gluten-free bread or pasta ...

There are some incremental expenses... for instance I tend to have to buy better brands ... for items that are stock... not always but just stuff like canned beans or canned chick peas... taco shells etc. but its not huge... they aren't special gluten-free just good brands making corn taco's from what they should be... corn...

Eating out it does cost me more... when Im somewhere I don't know I tend towards a high quality resto... somewhere you can actually talk to the chef or sous chef... however you can also do this locally with cheaper resto's you just need to do the work.

However... the whole catering industry is getting much better year by year... we have far more options and by the time your daughter is at that point then choice will be much better...

We have a thread somewhere with over 100 recipees all take less than 30 mins to cook... or the time it takes to cook real rice or gluten-free pasta... I usually cook larger portions and freeze them as convenience food.

It really doesn't need to take that much time or be that hard...

I can honestly say the biggest loss of time cooking gluten-free is actually doing the shopping... not cooking time or prep time...

This actually starts off taking forever... a few of us will tell you how we have been reduced to tears in a supermarket at 1st..

It very quicjkly becomes much quicker... it can still take more time simply because the brand you're looking for is out of stock or not carried by that shop... but its not THAT bad.

Also.. not being funny but just switching to a "healthy" diet might solve this al by itself... if you currently as a busy single mom rely on convenience foods... and you will be surprised just how quickly convenience foods become not that convenient...

The biggest convenience I find is just having a well stocked larder of basics... just from brands that do gluten-free stuff of taco mix to curry paste etc. The real thing I do miss is not being able to grab a sandwich or pizza when I'm out with my mates... especially unplanned or when one of them suggests "lets grab some food"... but your daughter is a ways off that and I fully expect the situation to be very much improved by the time she is.

  JodiC said:

For me the endo was necessary as I have no relief of symptoms from the gluten free diet alone. They had to do it to rule out other things, cancer being one of them. In fact the biopsies were only suggestive of celiac and that there could be another problem causing the villious atrophy. Celiac is not the only disease that can cause this in the intestine. I have somewhat positive bloodwork. (IGA only). I will do whatever I have to to make sure I am treating the right thing. My drs have been wonderful and thorough. I wouldn't want a dr that isn't. Be careful what kind of advice you are giving as someone new to the forum may not get the test he or she needs based on your opinions. Not just you, all of us. Also please watch what tone you are writing in. Sometimes it can be quite hurtful

jodi,

Sorry about the tone ... I did write it in strong tones (so far as you express tone on the internet)...

However that wasn't really directed at you, rather anyone else reading it ....

You Already have your biopsy so it won't make any difference to you and what I was saying is the biopsy is not a good metric for diagnosis... I did say it had other reasons, I just didn't get around to listing them.... (I had intended to...)

My answer was strongly worded because of what you said

  Quote

Blood work is not enough. An endoscopy is the only way to truly diagnose Celiac and or rule it out.

This simply isn't true ... (your MD may have over stressed but with good reason please keep reading)...

The fact is in many parts of the world the blood test is regarded as definitive... other places still adhere to the biopsy and other places leave it to the individual MD...

Places with social medicine and hence subsidised or free gluten-free food (like the UK) have different reasons for this... there is strong pressure in the UK to reduce the number of diagnoses because you can then get as much gluten-free food as your MD will prescribe for about $180 a year... or free if your over 65....

Italy takes a differnt approach and prefers saving money treating expensive complications that develop so the screen all pre-school children and diagnose from serology. 1:200 people are diagnosed in Italy... screening is the same incidence as the US at 1:133 so almost all celiacs are dignosed and the tail is presumed in the older generation.

  Quote

Be careful what kind of advice you are giving as someone new to the forum may not get the test he or she needs based on your opinions.

That is always worth bearing in mind...

However it goes both ways....

Many celiacs are diagnosed solely from bloodwork... biopsy however is useful to rule out other possibilities although these don't necassarily themselves rule out celiac disease.

Anyway, here is an interesting paper too...

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=15879723&query_hl=4&itool=pubmed_docsum

indicating colonoscopy follow up for patients who do not improve on a gluten-free diet.

Open Original Shared Link

For me one of the major dangers of biopsy is not really the biopsy itself, it is the perception of a large but decreasing majoirty of doctors that the test is in any way definitive in the negative.

This has led quite a few people into a long mis-diagnosis ... I read of one case in Norway on what started with a child...

7 years of gluten challenge/biopsy -ve/rechallenge ....

The blood work was positive throughout... yet the Dr. was searching for that golden test....

7 years of misery for the poor kid .. and in the end he got the +ve biopsy... but 7 yrs??? He could have been gluten-free and living a normal life... had a real childhood, not one of being ill the whole time and not having invasive tests for the satisfaction of the MD... and if this kid were to start his testing today not 15 yrs ago.. he would have been diagnosed by blood work alone..

On top of this there are many many people who's blood work is +ve and then get a -ve biopsy and get told "it can't be celiac disease"...

they get sent home with non specific IBS .. many of them years later retest +ve having spent many miserable years damaging themselves, sometime beyond repair. In many cases their symptoms have become so severe they would be testing positive on most biopsies but because they already have the "certificate" .. of a -ve biopsy they are not retested and not diagnosed with celiac disease.

In some cases a biopsy for diagnosis can be a "white lie" smoke screen too. If a GI beleives you have a decent chance of having cancer (decent being say <50% but higher than 5% ) its not particualrly productive to tell the patient you think there is a good chance they have cancer when that good chance is well less than 50%...

I think its perfectly OK for a MD to stress the diagnostic part for celiac disease in this so long as they don't actually beleive it...

Even if they tell you its a 5% chance .. its not a very nice thing to be waiting on the results for... so leaving the test as part of celiac disease diagnosis is a compassionate thing to do... better to hold off on scaring a patient until it looks like better than a 50% chance IMHO...

The problem is now I said that... and people read it they are going to start thinking if their MD insists on a biopsy they must be testing for cancer... which isn't really true... they can be testing for lots of other stuff too or in a particualr case the actual extent of the damage may be important, specially if you have something else wrong and they are giving you oral pharmacuticals which may not be being adsorbed... or they could just be one of the decreasing majority who still take the definition from when they were at med school...

  aikiducky said:

I just visited Liverpool a couple weeks ago, and now I suddenly understand the dirty looks I got at the bus stop...

Its funny, regional variations... Liverpool would be a definate place to queue though

  Quote

Oh, and I did get zapped by some ham that was labelled "suitable for coeliacs". That wording should have been a warning sign in itself! If it was truly gluten free it would have said so!

strictly speaking it shouldn't..say gluten free.. (yes I realise how stupid it sounds)...

Open Original Shared Link

  Quote

[b]A gluten-free food shall be based on or shall contain:

(a) gluten-containing cereals such as wheat, triticale, rye, barley or oats or their constituents, which have been rendered "gluten-free" according to Section 2.2.2; or

( ingredients which do not contain gluten in substitution for the ingredients containing gluten which are normally used in food of that kind; or

© any mixture of two or more ingredients as in (a) and (.

.....

  Quote

5. CLAIMS

5.1 A food prepared according to Section 3.1 may be called a "gluten-free food".

5.2 A food which naturally has no gluten may not be called "gluten-free"; however, a cereal or a

food product containing a cereal which naturally has no gluten, may be labelled to show that it is

naturally free of gluten and is suitable for use in gluten-free diet.

If this sounds stupid or misleading I completely agree...

  bhart said:

Thanks, everyone, for the great information. I will be coming back for more help as we need it. And yes, I do need to remember to tone it down . . . my English coworkers remind me of that as well!

It is really very good advice....

Perhaps you shouldn't have to but..all the same it will help you... on the whole the English love Americans anyway....

On this topic of things people usually find annoying or don't realise.... (having lots of American friends who give me feedback or just palin say "what did I do/say")

I do remember someone writing this huge complaint about brits on the BBC... and the arguament was centred around some guy had verbally assualted her on the underground "for being American" .. indeed he had shouted it across the carriage...

A lot of people commented.... you can probably find it but I can save the trouble...

As a general rule if someone not immediately next to you can tell what your saying... its considered too loud.

If the subject of the conversation happens to be how bad something is and how great it is in America ... its likely to further annoy people... and remember we love Americans to start off...

We also have some very strange quirks.... queuing is one of them...seriously don't laugh...its true... but the rules are somewhat arcane and complex... (and we make em up day to day just like cricket)...

For example my American girlfriend (brouight up in Paris) didn't understand the queing ... on the underground its basically everyone for themselves... (as a country boy I was perplexed by this for a while... the train would come in and leave and I'd still be standing there)

However waiting for a bus... is pretty strictly queues... this might sound completely unlikely but your safer going up to a thuggish looking person and informing them their mother is a prostitute and father rapist than jumping in front of them on the queue... (I told you it would sound weird)... perhaps the analogy is a bit OTT but people take this pretty seriously...

I have no idea how we define these rules.... we are just quirky...

  Quote

Below is the link to information about celiac in the UK. I used this site to gather information when I went to the UK on vacation in Sept.

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You can find some good info here but .... CUK do not believe in 100% gluten-free... this makes labelling of gluten-free or not gluten-free all but useless except in the 1st instance... its good its listed seperately since its quick and easy to see but its not reliable... if you don't want to be eating 200ppm gluten you still need to read the labels.

The good thing is some of the supermarket own brands actually illegally label properly...

Under UK law its illegal to label a 100% corn tortilla as gluten-free... but if you add wheat starch to it you can...

If this sounds crazy.... I agree! I'm just warning you...

Some of the supermarkets seem to agree and label accordingly....

The basic way to tell is simple....

If it says gluten free or suitable for celiacs then check the labels...

Because of EU law (not UK law) (so its more like federal law than state law) All top 12 allergens must be listed...

Hence a label can say "gluten free" and "suitable for celiacs" and the 2nd ingredient can be wheat starch...

It must indicate wheat as a source... unfortunately it needent indicate rye or barley...

Secondly.... A significant amount of malto-dextrine and dextrine is derved from wheat... (again it has to say if its wheat but not barley or rye) However... this has decreased dramatically in the last few years.... but some still do and will be labelled as gluten free.

  lcbannon said:

I too am very new to this and after reading lots of info on this site and others I have elected to NOT do endoscope.

1. The chance of them getting sample from a "damaged" spot not that high.

2. What diff will it make, I have went gluten free already- why do more tests.

3. No matter what tests show I will stay gluten free I feel so much better, it has not by any stretch solved all my problems but anything helps.

4. Even if all I am right now is GI if I eat right I will never become a full Celiac- a good thing.

Good luck.

p.s. I have sent sample off to Enterolab for results because I read not everyone tests postive on the blood test either, but yet still have it.

Erm wow.... it took me a page to say that! (which is my way of saying an excellent summary)

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Another question, I have two teenagers, 17 & 14, would you have them tested, and would the blood test be positive if they don't have symptoms? I've had vauge symptoms for as long as I can remember, the intermittent D, lactose intolerance off and on, things just started to get out of hand with exhaustion, low iron, sore joints, irritability (actually according to my family I've had that one a long time! LOL) I also have hypothyroidism.

If they were 4 and 7, I might say something different... since blood tests are really notoriously inaccurate in really young kids...

However a 14 and 17 I say the complete oppostite because of a few factors....

The symptoms of celiac do tend to be masked by hormonal changes... joint pain is maked by "growing pains", irritabilty and irrationality .. well they aren't called the terrible teens for nothing... what feels "normal" when your body is basically constantly changing ... ?

the second important reason is if they do start to see you get better and start eating gluten-free then the tests are not going to be worth much unless they then go back onto a deliberate gluten challenge...

I doubt at their age it will be as bad as ravenwoodglass but it is still seriously bad enough that its not something any sane person really wants to do....

Right now presuming they are eating gluten its two little skin pricks and a few cc's of blood...

In a few weeks you will start to appreciate what I mean by the idea of deliberatly eating gluten for a test is something most of us would way rather avoid.... So I'd say go for them now... even if they are a weak negative ...

In a years time your eldest will be making up her own mind and have other concerns... if the test now comes back even weakly +ve you can always push this later... People (including our family members like kids and parents) often do have a aversion to being tested... because they remember perhaps how we stuggled in the 1st weeks/months....

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I guess you have to laugh, or cry. Today I just feel very emotional! I guess it's just realizing THIS IS FOR LIFE. It's so overwhelming!

It gets easier... when you were a kid you started having to do your own shoelaces... and that was for life too.

Now you don't even think about it mostly....

This is how being gluten-free becomes.... much as it seems complicated and a lot of hassle it soon becomes routine... I realise that sounds unlikely just after your diagnosed... but it really does... it basically becomes 99% 2nd nature...

I guess I used a driving analogy before....

First time you get in a car, specially if you learn with a stick shift it seems impossible to do all that stuff together... each one seems like it takes your full concentration and then you gotta watch for other cars, pedestrians on top....

After you have been driving for years you don't even conciously think about this stuff that seemed like juggling eggs .. you just do it and concentrate on watching for pedestrians and other cars...

  TrillumHunter said:

Sorry to be a whiner. I promise I won't do much of it. My vanity isn't nearly as important to me as health. But I do like to look pretty!

Hey I can't offer make up advice.... I'm a guy and we have different products here anyway...

What I can say is there are lots of products that are safe and honestly if that's your biggest hurdle your doing really well.

It does take time to get used to stuff and find new products but you do find new stuff and mostly its going to be as good or 99% anyway

  Guhlia said:

Food for thought... I react VERY strongly to minute amounts of gluten, but if I purposely ingest large amounts I have no symptoms. Not that I purposely ingest large amounts, but my point is that small amounts affect me much harder than large amounts.

Guhlia... I'm exactly the same....

I do have a theory as to why.... its just my theory but anyone else is encouraged to add their 2c ....

Last time I mentioned this someone decided to tell me what I can and cannot do with MY body and told me what I should and should not say regarding things which were true.... erm the result of which I ended up getting an offical warning for trying to correct the lies that were being spread about what I said.

In order to avoid this....

First off...

Secondly the opinion of someone telling me what I can and cannot do with my own body and then telling me I have no right to actually report it is worth a lot less than nothing...

Don't tell me I'm not interested...

Ok so having said

I have experimented with this after I have been accidentally glutened....

Basically on vacation, eating out sooner or later I tend to get caught out....

At this point depending how long the rest of the vacation is... I have made a descision to just say to hell with the diet until I get home... which basically means my vacation stops revolving around where I can eat and requiring myself and my girlfriend to schedule our whole vacation around me being able to find something to eat. This can extend as far as not being able to visit a whole town... It took me many trips to Tuscany to eventually see Seinna ... the travel time and heat making it near impossible to actually spend a day and take enough snacks while not being able to find anywhere safe...

What I have noticed is I don't actually feel any sicker for a pizza and beer than CC.

Even more bizarely I found that the worst part of the symptoms occurs AFTER I go back gluten-free...

Whilst I keep the gluten topped up pop a few immodium I have D and some abdominal pain...

In fact its pretty much like I was before being gluten-free.... generally ill but not all the time... keeping it topped up seems to alleviate the symptoms...

After I stop (usually max of 2-3 days) is when the trouble really starts...

By really starts I mean I would be bed ridden if I wasn't stuck in the bathroom...

My interpretion of this is that the worst part sets in after because it is withdrawal....and the body starts to adapt to processing the toxin....

This is (I believe) why many of us seem to react more quickly/violently once we go gluten-free....

As a parallel its why a smoker can smoke 60 a day and not vomit after the first packet when a non smoker would gag on the first one... it doesn't mean the cigarettes are not causing damage but that the body has adapted to processing the toxin and accepted it has to. Indeed the body quickly adapts to feeling normal with the toxin and abnormal without it...

I see no reason why gluten wouldn't be similar....

I'm not recommending others should do this... nor am I presuming to say they shouldn't... I'm just offering the experience I gained when this has happened.

It explains why a small CC can be worse than a big slip.... at least so its worth considering what a lot of pain and discomfort gave me in terms of experience. Its not a suggestion to try it... and its certainly not a solution.... any more than taking crack is a good solution to depression... At the point you come down its very unpleasant... (I never tried crack I'm talking about gluten in case that slipped your minds)... but I mean seriously badly unpleasant to the point people with me want to call an ambulance...

Sometimes this just happens all by itself without me having the chance to stop ....

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are the three antibodies they test for correlated with the three grains we are to avoid, wheat, barley and rye?

Sorry no....

They are just different types of antibody

google : Immunoglobulin isotypes

  Fiddle-Faddle said:

I gotta agree with gfp here--he as absolutely right.

The current definition of celiac IS based on villi damage--but if you are gluten intolerant (as proven in your case by bloodwork AND dietary response) and continue to eat gluten, that WILL result in villi damage.

Endoscopies DO carry risks, and the end result for you is the same whether or not you get an endoscopy--a gluten-free diet.

Sorry to be repetitive (many of you have heard me say this in other threads), but waiting to diagnose celiac disease only after seeing villi damage is like waiting to diagnose a peanut allergy only after seeing an anaphylactic response.

Actually even that is starting to change....

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I saw a major clinic (not mayo but another big one a few weeks ago, can't find it right now) but they actually stated that biopsy was not a good standard for diagnosis. ( It appeared in my google news filter for celiac....)

I once remember a dentist telling me that toothache is a lousy indicator to see a dentist! It occurs to me its the same thing...

Your first question already gives the the answer

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He said she has a gluten sensitivity and we need to eliminate large amounts of gluten from her diet. But after looking up Gluten Sensitivity online everything comes back associated with Celiac.

Your MD is fixating on one test....

You can still be be celiac and have NO damage or nothing that "looks like celiac"

In the end its just semantics.... defintion from one book or a different one... it looks like the book he has says one thing!

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I also want to say, that I feel I get no help from the staff. It's like if I ask a question, I'm putting them out. So inse, I come to the internet to clarify my questions.

Hardly surprising if they know near nothing about celiac..... I have yet to have a MD that did... although others are lucky...

Some MD's will read what you take them and other's won't.... I can link you to hundreds of medical papers but non of that will make a difference if your MD won't read them....

Part of out frustration seems to be we are not happ;y with an MD that say "uggh I dunno, don't know much about celiac disease " and we expect MD's to know thousands of different diseases off the top of their head.... they don't, they're just people like us.

If you are the 1st patient that doctor has had with celiac disease then chances are your MD won't know diddlysquat apart from 10 minutes in passing at med school.

As more people are diagnosed this is slowly changing....