gfp

Nothing wrong with raw meat! I love a good tartare, and sashimi! Yum. I also will eat eggs raw, and prefer beef seared on the outside but pretty much raw inside. Always have.

Wow the idea used to make me nausious... let alone actually eating it ....

BUT ....

Raw meat is easier to digest.....

I was brought up to eat meat cooked so much that there was no pink left...the tiniest drop of blood on my plate and I'd gag...

However.... sushi and especially sashimi became "safe foods" for me.... very low CC risk... the first few times I iterally had so much gluten-free soy sauce and wasabi I couldn't taste anything and just swallowed... like one of those contestants on those stupid progs where they eat cockroaches and stuff.... (again Japanese influenced )....

I had to force myself to try carpaccio and then tartar.... For the first few times I had to swallow it several times... my mind wouldn't let me swallow it... However my meat got gradually rarer ... I now eat my steak French rare.... or blue... I love tartar and carpaccio.... If I can do this anyone can.... and I can tell you its easier to digest.... anyone who tries it will tell you the same because its not even close...

As someone else pointed out....we eat lots of raw hams etc. and "sausages" like salami's... we just don't realise it.

Also raw beef, unpasturised cheese etc. contain PROBIOTICS .....

Well it's encouraging to hear that you all cook without garlic and onions (I just tested onions last night and didn't have as totally horrible a reaction as I did with garlic, but I definitely had a problem! I took your advice about fresh herbs and bought fresh basil, oregano, and flat leaf parsley for starters. I made a great chicken dish with spinach, tomatoes, pine nuts, fresh basil and oregano, and feta cheese with just a bit of salt and pepper--it was delicious. I do have a good sea salt, but I haven't tried the one you mentioned, Mango04. I'll have to look it up and try it. Thanks!

Suggestions....

You can try cooking the garlic whole and taking it out... or fry gently in oil and use the oil etc. it all depends whihc part you are allergic to.

Also since you sorta tolerate onions you could try chives...?

Again you can cook with them and strain them out.. same with shallots ... I can't promise it will work but its probably worth a go.,

OK, Im safe home in Paris .....

Steve, I haven't been on the computer today, just found this thread, and I am pretty upset about what's happening to you. I am afraid that your mother did do it on purpose, to prove to you that you're wrong about the 200 ppm not being safe for you. However, since you say it has bad effects on her as well, she may not be rational anyway, and as somebody said, acting like she is stupid. Being your mother, she can't be stupid for real. But the gluten is making her that way.

It is a shame that in the UK the coeliac society and doctors will declare that all celiacs are safe consuming the 200ppm stuff.

Thanks, this is sorta my feeling. Its a terrible thing to say but I think on some level she was trying to priove to me that the 200ppm level is OK.... As I said the night before I found the barley malt ("suitable for coeliacs") <200ppm snacks... and told her she can eat these but they make me ill and she should consider trying without them.

The next morning I actually read the gluten-free bread... label... and #1 was wheat starch. I find it hard to beleive that on all levels my mother didn't know this ... and the part that seems in doubt is what level of consciousness this was on. (In other words was she aware or was this a tiny thing in the back of her head)....

Please just rest, drink lots of water and don't make any plans right now to do anything (other than calling your aunt, so she can let your mother know you are safe).

Thanks Ursula and this is what I actually did,,,, I went quiet because I had no internet access.

Don't bother talking to your brother, he apparently isn't even trying to understand how you feel.

If you knew half of the story !!!! Heck... why not... !! So my brother is gay ... and the only one who never questioned him, who makes the effort to meet his "friends" etc. is me. I am the only one who didn't tell him he should get over it... etc . I just accepted him for who he is.

I know what you mean about the books not being in alphabetical order really bothering you. My autistic tendencies are much stronger when glutened, and that one could happen to me as well (except with me, the books would have to be arranged by size and subject ).

Well it was fiction ... but under normal circumstances I doubt I would have noticed.... the books were a good 15' away.. I just had this bad feeling about them... (OK this sounds silly but like they were looking at me).... I could just feel something wrong about them and they were pretty much at the limit of my vision...

Hi Steve -- I haven't been on the forum much lately, but Karen called me to tell me you're in trouble -- you know us "old-timers" on the board have to stick together!

Oh thanks... and Karen thanks too. Those hugs really help .....

I do wonder if your mother, since she obviously is ingesting a LOT of gluten, even realizes any longer the effects of gluten-contamination. Neurologically she may be STAYING in a gluten-stupor. At that point, she isn't going to either know or understand what is happening to her own body, and will continue to cross-contaminate and/or simply ingest gluten on a regular basis with no regard to it's consequences.

Hmm.... well I managed to get a moderator and het back.... I explained to my mom (an ex smoker from 15 years ago) that the gluten is like tobacco. If she tried a cigarette now she would probably be sick, if she tried a whole packet she would almost definately be sick but she used to smoke a packet a day...

She threw out the codex stuff.... etc.

Anyway....

Wow... talk about withdrawal....

I spent the day after the wedding buying light fittings and door handles etc. and a reading lamp for my mom.

I also bought a printer cart for my father... because he has problems fitting them himself.

I spent half the day buying food and things for my moms house because she was complaining about the lights, the door handles sticking etc.

I get home and start fitting them ... and she throws an absolute temper tantrum. Streaming.. shouting ... etc. about how selfish I am and how she has been in alone all day .....( I went to the DIY store with my father...since Im stopping with mom. )

Anyway, I rushed and broke a bulb.... so I get the whole tirade ... honestly if she wasn't my mom....

Why does gluten cause such anger? I relate totally and find I need to "hide" until the rage and symptoms pass. Is there a mediacal reason for the anger?

Sorry .. Im feeling a bit ....... right now but try a search on exorphin on this board and also google in general. (Wikipedia also has a brief article)

As GFB said, and this can not be stressed enough for folks on this type of drug, do not stop this suddenly on your own. Your doctor can prescribe something else and then perhaps you can try weaning off of them. You may find that without the daily gluten in the Xantax you don't need an antianxiety med any more. No certainty of corse but you never know.

I was on a number of drugs including muscle relaxers, anticholoragenics and antianxiety prediagnosis, I knew that the drugs I was taking could mask symptoms during the elimination diet (allergist assisted) and in the weeks preceding the diet my doctor aided me in weaning off everything. I knew how much pain I was in for doing this but I felt it needed to be done. To make a long story short I have never had to add anything back stonger than a baby asprin. It did turn out that the form of immodium I took multiple times in a day had gluten. I would have never known the elimination diet worked it I had kept taking it.

Yep, much better put than me.... (hardly suprising right now)...

But please.... don't just stop Xanax... its a dangerous drug while your taking it but much more dangerous if you just stop....

Given you went on this due to medical advice I would seek medical advice abut coming off.

I VERY VERY rarely tell anyone to keep taking gluten... even for biopsy etc. BUT this is not any occaision. It really is very dangerous to just stop ...

I realize that you are very upset and you have every right to be. My advice to you is to go back to your mom's home and not cause any waves at this time. Remember this is your cousin's wedding and it's not fair for her to suffer any consequences because of what has happened beyween you and your mom. There is a time and place to deal with everything in life and at times when we are uspset we do not think in a rational manner. Also, the days before a wedding and a wedding day will never be forgotten, especially for the bride. Make this a happy occasion for you and the rest of the family. From this point on make your own meals and control what you eat. Deal with this issue later after the wedding. I am so sorry you had to endure this but be the bigger person here.

This is true... luckily my cousin was actually married already (In the Ukrian) and this is the "family" reception but its still not fair on them...they are arriving tomorrow so I hope my aunt or uncle can intervene before that...

In the UK coeliacs are told by their doctors/dieticians, Coeliac UK even that Codex (200ppm malarky) is safe, and I reckon if your Mum's been ok with it she'd have no reason to think you wouldn't.

Yep I know but I have told her again and again it makes me ill and that I believe it makes her ill.

The night before I found some Walkers Poppadoms and read the packet... and saw the "suitable for celiacs" .. I was almost going to risk one when I saw the ingredients contained barley malt...

I brought this up last night but she was still going to give me the wheat starch bread ...

This is partly what really hurts.... I told her I didn't eat it, I wasn't feeling well enough to argue but I told her and this morning she starts making me toast from the wheat based "gluten-free" bread...

I feel like she thought she was testing me....

Even if I am wrong this still seems a terrible thing to do??? Shouldn't you respect my descision?

I guess she could have just forgotten?

Is there any way you could switch to something that is gluten-free? If this med does have gluten it could be contributing to the anxiety. You could be creating a cycle where you are taking the med to relieve symptoms that are then being brought back by the reaction to the binders in the med itself. You may want to get the info that comes with it and call the company yourself to check to check the gluten statis and perhaps ask your pharmacist and doctor about alternatives.

= definition of addictive drug....

(regardless of the gluten in our case)

As I remember and Im in no state to do research ATM Xanax can't be stopped but has to be switched for a less addictive psychotropic and gradually weaned off... if you are on it long term.

Again this is my memory but I think it was xanax which was just banned in Europe last year for under 18's... due to the increased suicide risk which is sky high .. even compared to not having any moderator at all.

Erm... anyway... I wouldn't just stop and I expect their are gluten-free alternatives...

just seen Richards Reply and again from memory but Zoloft is I think one of the medications used to wen people off Xanax.

Thanks to everyone....

The bank gave me enough money to get a room etc. so its not an immediate concern.

Right now I am just trying to get over the worst of the brain fog... and the thought of going back somewhere I thought I was safe is nagging at my paranoia.

Equally its a long story... a long time ago I got my mom off the 200ppm stuff and she was much better... however my mom has just the same reactions as I do... only for me it was more intense due to the long time I managed to be without gluten....

As someone posted the otherday, why does a micro glutening seem worse than a pizza ?

I have my theories .. as many of you know...

anyway my mom has cut herself off from everyone... My father lives close enough to walk... but if I go to him it will start more family problems... my aunt had me on the phone for hours over the last week about how to approach my mother about inviting my father (divorced) to the reception..

They have been divorced over 20 yrs but its the last 3-4 they haven't talked a word and my mom refuses to say why... it coincided with my father's cancer .. He's also not that well ... and on the off chance the 'cold and stomach infection' I thought I had gets to him it wouldn't be great...

Talking rationally to my mom is a pot luck thing... I now realise why since she is eating the codex gluten gree stuff.. I know full well what it does to me... and I now see why she needed the omneparazole ...

My aunt is the only one who keeps making the effort with my mom.

Everyone else has given up.... including my brother who is in his own little world...

I called him and he lectured me on how I talked to mom and how it upset her... great... apart from I can't help it... but he is the type of person who see's my dad but doesn't tell mom... (to keep the peace)...

I think the best thing is to call my aunt... All my numbers are on my phone in the house but Ill get my other cousins work no. and then get theirs... last thing she needs right now I guess so I feel mean dragging her in but I am afraid if I try explaining this that it stands a good chance of blowing up and exasperating things.

You just need to hold on and let that bit of rational thought come through and listen to it. Let the meds help and drink some water

You know you have just taken a good dose of a very strong psychotropic substance, just keep reminding yourself of that.

Whew... yep the problem is trying to convince others its no good trying to rationalise with me right now, I'm on a bad trip... I tried explaining to my brother, he just told me to get a hold of myself... and act my age... I tried explaining "I'd love to but ..." well he doesn't regard gluten as a psychtropic substance... Realising it myself is a great help so long as I don't need to explain it ....

Steve,

You need to calm down--I know its hard because of how gluten affects you, but you have to think rationally.

Whether or not your mom knowingly glutened you, (and thats a whole other discussion I won't take the time to get into now) you need to get your things from her house. When your girlfriend gets there, could she go for you? That way, you could get back home intact, and not have to face your mom.

I hate the thought of you out there all alone like this--but I'm glad you thought to reach out to us. You know we're all here for you. Hang on till your girlfriend gets there--it's all going to be ok.

Stay in touch

Thanks, I realise Im not rational.... however I'm trying not to do anything irreversible but I feel so betrayed. I'm second guessing my paranoia to the point I think I'm paranoid about being paranoid?

I'm finding it really difficult to hold a thought for more than a minute or so... and a bit of an emotional wreck... if I go back to the house I am sure I'll say something I later regret... I feel really nausious over the whole thing... and if I ask my aunt who would understand I am just driving a further wedge between my mom and her last living relative who actually talks to her.

I'm really angry as well but I know that my normal way of dealing with being angry is to just withdraw into myself... if I allow myself to go into shutdown mode then I really don't know what will happen...Im pretty much likely to end up getting arredted or something for acting strangley .... what I wanted to do was just walk off into the countryside and curl up somewhere... it really took a lot of convincing myself that this was a utterly stupid thing to do... especially In February... so instead I walked to the nearest town and bought some loperamide and ranitidine (since I can't buy onmeprazerole over the counter) ..

The problem is that my hold on rationality is tenuous at least. I'm an expert at "sounding rational" when my brain is messed up.... and there is little seperating cohernet and well articulated sentences and me purely babbling in baby language...??

If this isn't enough the books in front of me are out of alphabetic order....the fact his is disturbing me so much isn't a good sign....

OK, you guys are my last hope here not to do something really irrepairable....

The short version is that my cousin is getting married and so I'm back in England stopping with my mom who's celiac.

I have been really ill since I arrived, I literally spent most of the last few days in a stupor. My Mom kept getting me food....

Anyway, yesterday I managed not to eat anything and woke up much better ... mom offered to get me breakfast... I actually felt bad because I had been so miserable for the last 3 days ... so I went to get breakfast myself...

I found the "gluten-free" bread and then found out she has been feeding me GLUTEN for 3 days...!

I don't know what to do... I just walked out ... left everything I'm not wearing, my bank cards, passport and everything. I just want to go home to France but my passport etc. is in the house... I walked to a nearby town and managed to get some money from the bank... but its not much ...

My girlfriend is scheduled to land tomorrow, if I had my passport I would just tell her to cancel but I can't get back...

She could bring all my documentation but I still can't get a new passport for a week...

If I go back to my mothers I will say something I don't want ... and I guess if I try and get my passport legally and the police become involved it will be pretty serious....

I am obviously really upset my own mother was feeding me gluten... I still can't believe she would do it but she thinks the 200ppm stuff is OK???? I can't go back the whole kitchen is contaminated...

I even found non gluten-free cookies and stuff ?? At this point I am paranoid enough to wonder if she has been putting them into the food as well..

I really don't know what to do .... The only person I could turn to is her sister... but this is bound to make a further family mess. I'm in a public library now... I will try and come back later ...

In the process of learning.... IgG is an alergic reaction and IgA is an intolerance. A

IgE is a true histamine alergic response...

I don't think you would have gotten glutened from having a gluten-pizza in the same oven as your gluten-free pizza. It's more likely that you accidentally touched the gluten and then the gluten-free or that crumbs from the gluten got on yours or something like that.

Probably more likely but equally spitting cheese etc. can cause CC.... if it lands on the gluten-free pizza....

Either way its not really ideal .... but just another of those to chalk up to sharing a kitchen...

Its really not possible to share a kitchen with gluten and not get CC from time to time... the amount and frequency depend on how much attention you can give it .. for instance cooking the pizzas seperately with the gluten-free one first would be less risk... not handling the pizza at all is less risk... and not having any gluten in the kitchen is less again....

Everyone should make their own choice but you shouldn't con yourself.... share a kitchen you will CC ...

Boy, I feel so ignorant - I aced nutrition class in college and am an RN but haven't a clue what IgA deficient might mean! I did get my testing done while on wheat etc - in fact being that I am a vegetarian, at the time of the test I was consuming a meat alternative which was made with wheat gluten flour

learned how to quick edit here - read up on site about IgA deficiency. I must say though, nursing classes don't prepare one for this type of thing at all - even my kids Dr had to print off a summary when we got my son tested and even then he didn't know a whole lot - well if anyone knows what type of Dr knows about this type of thing - I feel that we need to counsel with someone who may know what they are doing!

Its not that difficult, its one of those very rare cases it actually means what you think

I'll defer to Jestgar answering but it just means your body produces low IgA anyway so the normal range doesn't apply.

Without total alpha count the low IgA can mean you have a low total OR you are not reacting in your gut...

Until you rule out being deficient its not a reliable negative test....

However in answer to your whole question....

It probably does mean something and at sometime with the future you might get a reason but to my knowledge at the moment the reasons some some people react with different antibodies is not well understood.

Here's why we went completely gluten free on the home front. When we began gluten-free it was to find out if our 5yo was Celiac. She had all the symptoms and it was going to take forever (8+ months) to get in to see a specialist for a consult to decide whether to do a biopsy... so we went on a trial.

IMO a gluten-free trial is useless if you don't go 100%. And if there is even the least chance of cross contamination from gluten crumbs all over the house (floor especially if you are testing a young child) then your gluten-free experiment will give you useless results if the symptoms persist you will never know whether gluten is the culprit or not.

Well people seem to partially recover but .... overall ...

We tried gluten-free for our 5yo only for a while and I became the crumb nazi in the house. "Did you just eat gluten? Where did you eat it? Did you leave any crumbs? Did you wash your hands before you touched the baby? Keep your fork out of the child's plate - don't cut their food with your gluten knife..., which side of the barbecue grill did you use? Did you get gluten in the baby's frypan? Don't use that colander...." it was awful for all of us.

It seemed that every other word that came out of our mouths was GLUTEN. Gluten became our lives it seemed and our Celiac daughter felt terrible for being the cause of the tension (of course it wasn't her fault of course we didn't make her feel bad... but a kid can sense these things no matter how much of a positive light you put on it).

Now we're 99% gluten free in the house. The 1% is Daddy's beer and the odd licorice (or other gluten-filled but non-crumby treat for the non-celiacs). I buy gluten crackers and other treats for my other children but only the pre-packaged ones (individually wrapped) and only to go in their school lunches.

I found that having gluten around made gluten the focus of my life, my eating etc. you have to think about it constantly...

It has worked wonders. In fact, gluten-free living at home has made ME feel a lot better (although I've tested negative bloodwork and biopsy) which has been a nice offshoot. But best of all, we have a completely safe place for our Celiac daughter to live. She can drop her gluten-free cookie on the floor and no worry about picking it up again and eating it.

I know that going gluten-free in the household is not for everyone and there are strong arguments for having a G/gluten-free mixed household but for us, it's worked extremely well and we're just fine without wheat.

Good luck with your decision.

mamatide.

Excellent post.... very well put...

Its true everyone should make their own minds up but your arguament is well put and will help them do that....

The only downside is the rest of the family but this is one of those arguaments where they really are not missing out and the option is hasardous to someones health...

The genetic test can be readily drawn at that time. Other tests are not appropriate such as the gliadin, tissue transglutaminase, and endomysial antibody titers

True in some ways but perhaps not useless.

If the baby has elevated IgG then this is due to transfer across the placental wall.... how this affects the baby is I guess either good, bad or indifferent... IgA should not be elevated until breastfeeding... so in a way a IgG + and IgA - test is still useful.

This could make a difference later for decisions on breastfeeding or introducing gluten.

Just a weird aside here. Has anyone else ever tried writing with their right hand the normal way and writing the same thing with their left hand backwards, both at the same time? (Think mirror image.) I used to do this all the time and thought that everyone could.

I do have to stop and think about left and right - I'm often in front of one of my classes and tell them to hold up their right hand while I hold up my left, or move to the left while I move to the right, so they get it, but then it messes me up.

I do this all the time although forwards, backwards or upside down make little difference...

With a bit of practice you can write two completely seperate things with both hands at the same time or what I find useful is a different colored pen in one hand when taking notes and I just use the other hand when i get to the point ...

The reason left and right are so confusing is they don't really exist... you don't actually have a left side because of you turn over its your right side. If your spatial awareness is high then this is rather obvious hence its confusing...

I tend to just write with which ever hand is convenient... practice wise its my left but if Im presenting and using a whiteboard etc. I just stand to whichever side is best and use the appropriate hand... the same goes for using tools .. some are designed to work one handed so I use a corksrew and scissors right handed .. others like a hammer, wrench or drill I use whichever is easiest...

I did eventually convince myself that the ingredients listed did not contain any malt, and I think I bought (almost a year ago now, so memory is foggy)

Its completely possible to do the same with anything. Pizza, bread you name it you can convince yourself its gluten-free...

If you drink grain alcohol or alcopops then It must not be the gluten, you probably just suffer from IBS and the gluten has nothing to do with it. Beer is low in protein anyway so mightest well add that to the list, it washes down the pizza rather well.

In the end its your health, convince yourself of whatever makes you happy.... I know of a few celiacs who think an odd beer doesn't hurt, I mean how bad can it be?

Another really easy way to find gluten-free food is just take the labels off. Its really quite simple with some warm soapy water to remove lots of labels and then there is n0 gluten.

You can of course decide not to take chances .... but hey you might get hit by a bus tomorrow?

My experience is it is incredibly difficult to get users to give input....

Once your site is a reality to can't mention it here anymore (see rules) ... which leaves you trying to build up regular users and most people seem to prefer to just ask questions here or other established sites....

IMHO its a shame because a decent rating system could be put in place, peoples experiences etc. and this is much better when you have feet on the ground...

In most few instances people will take the information, thank you profusely and never contribute a single word or click.

In many cases I then found they would write up trips places like here so then you can't even use what they have said because of copyright... so they take your resto list, put it on here and then you can't even use the review they write...

You will need a lot of energy to get this rolling.... IMHO

I am quickly getting to the point where I can't be bothered anymore, I have probably over 1000 emails saying how useful the site is and perhaps 10 comments people added through a webform. I have to deal with the SPAM and occaisional DDOS attacks etc. and noone thinks its even worth 5 minutes of their time to make a post or write a small review?

My web comment form is used more often for SPAM than it is for its intended purpose.. the forum had attacks from fundamentalist Christians telling my users they should repent and seek forgivness and that celiac is a punishment from God.

I doubt I would do this again...

Thats a great link ! I have bookmarked that one - and it seems perfect. We haven't really got to the planning stage of our trip. As a rule we like to travel in the small country areas but if my gluten-free is hard to find - may have to go to more populated areas. Florence is on the List and Tuscany and also Venice. I guess Pompeii. If you have any special places please post them ! Or PM me. What gluten-free choices are available for breakfast?

Man, Italy is small compared to Oz but its still huge. I have yet to go to Venice

Or PM me.

How long have you got?

Florence and Tuscany are a several week trip all by themselves if you want...

First advice for Florence is pre-book all your museums... seriously high season and the queues are horrendous ...

From Florence Sienna is not far away though the train is a real slow one... and Pisa is very nice and once the tourists go back and night surprisingly non touristy...

Regarding Pompeii, this is a whole other Italy... again one of several weeks... to start appreciating it.

Naples is the big city but it is also a very special place.... if street crime were actually recorded it would have a crime rate through the roof but ?? It also has some excellent gluten-free places.... if you can eat cheese you might die and go to heaven...

Leaving Naples there is a regional railway.... I have usually camped in southern Italy... but there are many B&B type places.

My personal favorite is almost anywhere on the Sorrento line.... easy access to Naples (the national archaology museum is incredible.. ) and you can getr the train to Pompeii and Herculanium, Stabia etc.

If you intend to drive then Massa Lubrense is a area... its has no real centre and we ended up using buses and lost a lot of time... we camped at a place called Village Neptune... but it also has self catering if you book in advance.

I gotta say ts incredible for an outa the way place but a real pain to get to/from.... unless you drive yourself. Great diving and snorkelling and the Jellies don't kill.

Another fantastic getaway is Ischia.... keep it quiet

I found a great gluten-free pizzeria ... incredibly cheap... and incredibly nice people... It was so good we ate there almost every night very very nice people (did I already say that?) ... but they were... they insisted I try local wine and then refused to charge me ...

and kept making me little gluten-free snacks as treats ...

Its a smallish Island with a slow pace and I could spend 2 weeks easily there... wonderful local cheeses and beautiful scenery. Almost as beautiful as Capri without the prices ... and just a short ferry journey from Naples.

If you are near Rome ... I could go on for 3 pages... Rome is Rome... incredible ... their are plenty of cheap B&B in the centre near Termini station... and a really nice gluten-free pizza place that is very understated just 2 metro stops away...

I can look at any town for you once you decide on a provisional itinery....I'm terrible I always prefer winging it and take a tent just in case ... I never like pining myself down because you find such great places and want to spend longer....

My tinned tuna was confiscated at customs in the US (as it had water in it) but you can still put it in your luggage.

Nothing (legal) will be confiscated in Europe.

It scares me to think how many people are suffering with atypical symptoms. When their tests come back negative most likely the doctor, who is probably really trying to help his patient, thinks that negative tests mean that gluten can't be an issue. Most doctors wouldn't even think to just ask the patient to try the gluten-free diet, or an elimination diet, just in case there was some sort of food intolerance causing the symptoms.

Nancy

Yep and this is why I think we have to help the poor MD's

Seriously though, the MD just wants a nice neat solution. List of symptoms that fit a well known disease, preferably one with a simple pharmacutical cure.

Its just human nature, if they can give you a bottle and tell you to come back in 6 weeks if it doesn't clear up then they just solved one problem and they have the next 50 patients to get through... so unless something looks like you won't be around in 6 weeks the easiest thing for them to do is take the simplest to treat symptoms. Putting someone on a gluten-free diet isn't that simple, it involves follow-up and its largely out of the hands of the MD... at least as to how well you follow the diet.

Part of the problem is very little of celiac disease is life threatening in the short term. This is proabably why many of us get better service from naturpaths etc. because they are not looking for what will kill you in the next 6 weeks but more an overall picture...

How many times does a MD say, how long has this been going on for?

One of us answers .. well a few years, it seems to have gotton worse in the last 2 ... or so years and ....

Take 2 of these twice a day with food... come back in 2 weeks if you don't feel better..

Did they not hear.... we just said years, do they think they can clear it up with a course of antibiotics? or tylenol?

Nope usually they have no idea ... they figure some of your symptoms you got confused about and are just because you got a bug/stress/bad news, good news ... you name it... and that although you just said your general health has been deteriorating for years they just want to eliminate that bug or whatever and pit you back on the even keel of slowly deteriorating health ?

My life is awesome now. I can RUN with my kids (not just jog, I'm talking track-and-field running), I can move furniture around, I can walk for miles, I don't walk like a duck anymore, I can take my kids whereever I want, whenever I want. It's like a miracle.

Yeah...maybe its a good idea to not go crazy with the peanut butter.

I'm upset by this...

Why couldnt this cancer causing mold decide to grow on something gross....like Quinoa?? I would be totally cool with that...but noooo...it has to ruin PEANUT BUTTER!

In fact...why is it that all the BEST tasting foods are the worst for us?? Before getting sick I loved Big Macs and Donuts....and a long list of other unhealthy foods.

Then recently I saw a list of the top 5 worst foods to eat...and donuts was #1.

I watched "SuperSize me"...and well....I'll just leave it that.

It really does suck though.

I dont really like green vegetables.

Well I guess you can combine that with the I can't believe I like brown rice thread

I think what we like is what we develop a taste for... to a large extent I think this just gets set when we are kids.

How many people genuinely thought beer was good the first time they tasted it?

The second reason is instant gratification, which is itself a kind of conditioning.

Fast food is minimum wait, you hand over the cash and you get ready to eat food, no prep or waiting.

ReneCox:

You probably feel you deserve a compensation for all that good work and sticking to gluten-free.... not to mention when I first went gluten-free I started eating trash food like chips and peanuts just because its simple to find and easy to find gluten-free....

I did find that peanuts give me stomach ache though... when eaten as a major part of calories they feel like lead in my stomach.

No room in the freezer. There are three of us here. Daughter had her own little fridge with a very small freezer. Husband has no food issues and most of what's in the freezer is for him. He insists on tons of ice cream.

No problem then he can just make the soup for you fresh as you want it?

But why does he need so much frozen food? Doesn't he cook from scratch?

If the answer to these is he doesn't cook then I suggest he starts.... you need to eat and if having a few soups around is going to help why fill the freezer with stuff you can pop out to an all night store and buy anytime?

Sorry if that sounds tough but you should think about your health before ice cream IMHO...

If sub-classifying presenting symptoms of celiac/gluten intolerance will help MDs make accurate diagnoses, then I'm all for it. The way it is now, if a patient doesn't present a very narrow set of symptoms, then they don't get a diagnosis that would greatly help them.

I'm really not sure it is....

There are quite a few MD's whom are already studying celiac disease but the vast majority are badly informed.

What they know of celiac disease is from medical school sometimes 50 yrs ago...

We also have a lot of division, even posessiveness. Many GI specialists not only don't consider neurological damage, they refuse to connect it whatsoever ir even look at studies about it.

I think eventually we will learn more about celiac disease, perhaps enough to sub-define it, perhaps enough to give it another name?

I just think that at the moment we don't know enough and it will take a lot longer to join the dots by sticking to one rigid definition right now and that an inclusive definition allows more subjects, more information and more research. Right now we have seen it grow from a very minority rate disease to something your average GP has perhaps heard of since med school.

If we split it and have lots of different names we go back to square one for many of these MD's. Also people who don't have biopsy +ve will continue to be sidelined and considered not true celiacs by some.

Anyway, for a few of the experts sub-classing it might be helpful but to the general medical community I don't think so,. at least not yet and for a long time. That doesn't mean I don't think there are different classes ... it means I think sub-classing it and dividing it will not help most celiacs right now and will probably hinder many being diagnosed and helped.

Hi there,

If you feel better stick with it.

As for being Filipino, if you read Dr. Green's book celiac disease: A Hidden Epidemic, he says celiac disease knows no boundaries when it comes to ethnicity. It USED to be a predominately in Irish, English,...(Northern European), but now it is found eveywhere.

Good luck! I hope you keep getting better...

Jacqui

Yep, lots of Spanish genes found their way into the Filipino gene pool... in either case its not completely limited to any racial group as Jaqui say's.

Look on the bright side, if its h. pylori its easily curable and then the diet will start making you feel better.

Aw thanks Steve but not planning any trips to Paris or Lancs ....must check out ebay - although I reckon the postage will be alot. More than a score do you reckon??? (ha ha L'American's know not of what I speak )

Bev...have you been drunkenly shouting????...damn..missed it...

Yep but just find one in Lodon you can collect or try one of the "bankrupt stock" places like Morgans

do you think the tanning spray contains gluten?

Perhaps or maybe its the donuts ?