Any Advice On Starting gluten-free Please?

[Deb O (UK)]

Hi everyone

following 1 positive antibody test recently my doc said he would refer me to the hospital's dietician as I need to go gluten-free. That was 3 wks ago - I phoned doc's receptionist last wk and was told the referral letter had been sent. I phoned hospital today who told me they haven't received a letter I was told to phone the doctor again and "not to worry" because when they receive the letter I will be offered an appointment within 13 wks !! When I phoned the doctor I was told that in fact my letter has only just been sent off.

When I came off the phone I felt like crying, but didn't. You know how it is - it's so frustrating. I feel I cannot wait until November to see a dietician. I think I ought to 'go it alone' and start eating gluten-free, but it feels scary because I realise that once I start, then there's no going back and I'm a little anxious that I won't 'do it right'.

Any tips out there for starting the gluten-free diet on your own, without professional advice? I'm particularly interested in finding a bread substitute that is tasty - any recommendations within the UK?

It's a lovely sunny afternoon out there (central England), I'm enjoying watching my little girl play!

Look forward to hearing from anyone who can help, Deb

[tarnalberry]

It's both easy and hard. What makes it easy is that only four foods have gluten - wheat, barley, rye, and oats. So, you can eat anything else and be fine. What makes it hard is that anything that has a bunch of ingredients is likely to have one of those in them.

So, the easiest, safest thing to do is to eat whole, naturally gluten-free foods. Fresh produce, meats, and dairy. Eat all the fresh fruit, vegetables, milk/cheese (if you can handle dairy), fresh meats, eggs, beans, and rice you want. Use pure oils (like olive and canola) and pure spices to season your foods.

Yes, this means more cooking, but it is the safest way to avoid hidden glutens in labels. But it also leads to the concern of contamination in the kitchen, and you'll need to be careful of anything that shares gluten containing ingredients - including getting a dedicated toaster and not sharing things like peanut butter jars or butter.

[Ursa Major]

Hi Deb, and welcome to this board. You definitely shouldn't wait until November to start the diet. Many people here have had the experience that a lot of dieticians were so ignorant of celiac disease anyway, that they were next to useless.

For starters, you need to know that gluten is in wheat, rye, barley, triticale, and possibly oats (the experts still can't agree on that, as some celiacs get ill from them, and others don't). You need to read EVERY label of any foods you buy that aren't obviously gluten-free (like fruits and vegetables).

You also need to pay attention to personal care products, like shampoo, conditioner, soap, lotions, lipstick etc. If it has wheat germ oil, barley extract or oat bran, you are better off switching to a different brand. I know that in Europe it is generally believed (because of the codex alimentarius) that up to 200 ppm is not a problem, and that wheat germ oil and wheat starch is okay. Unfortunately, many people never get completely well because of that information, as it is just plain wrong. There are SOME people who seem to be okay with this, but many are so sensitive that they aren't.

Nini has put together a 'newbie survival kit' which should help you a whole lot. Here is the link to her site: Open Original Shared Link. Scroll down to the bottom, where you can access either the whole kit as a zip file, or if you have problems with that, the next link has the single files for download.

Oh, and you also need to replace your toaster (or buy one just for yourself if others in your house eat gluteney toast), and you need a new cutting board and cooking spoons if yours are made of wood, as well as a new colander if you have a plastic one. None of these things can be cleaned well enough to not get cross contamination. Even ONE CRUMB or a tiny bit of left-over gluten on something can make you ill. You need to be vigilant.

NEVER stir for instance regular noodles, and then use the same spoon to stir your gluten-free ones, because you will make yourself ill.

It sounds complicated, but you'll get used to it soon enough. Try not to start out eating too many substitutes for gluten foods (like bread, cookies, cake etc.), but rather eat naturally gluten-free foods like meat, vegetables and fruit, as that is far easier to do. Also, the substitutes are usually high in sugar and are very starchy and might make you suddenly gain a lot of weight. They are nice for a treat, though (unless you're like me of course, I can't tolerate any of them).

[TCA]

Here's a list I started a while back that might be helpful.

Open Original Shared Link

[Deb O (UK)]

Hi,

thanks to Tiffany, Ursula and TCA for your replies ~ really helpful advice and encouragement. I feel so much better for reading your replies and as always I feel less isolated after communicating with you on this board

I've made another appt to see my doctor on Monday with the view to asking him to refer me to see a gastroenterologist, but I'm so keen to start gluten-free that if I have to wait for weeks to see GI then I might just forget the dx and 'go for it'! I certainly feel more prepared now, armed with your info.

Big hugs to you all, Deb

[gfp]

It's both easy and hard. What makes it easy is that only four foods have gluten - wheat, barley, rye, and oats. So, you can eat anything else and be fine. What makes it hard is that anything that has a bunch of ingredients is likely to have one of those in them.

So, the easiest, safest thing to do is to eat whole, naturally gluten-free foods. Fresh produce, meats, and dairy. Eat all the fresh fruit, vegetables, milk/cheese (if you can handle dairy), fresh meats, eggs, beans, and rice you want. Use pure oils (like olive and canola) and pure spices to season your foods.

Yes, this means more cooking, but it is the safest way to avoid hidden glutens in labels. But it also leads to the concern of contamination in the kitchen, and you'll need to be careful of anything that shares gluten containing ingredients - including getting a dedicated toaster and not sharing things like peanut butter jars or butter.

Gotta agree!

If I could give a single bit of advice to a new coeliac it would be worded even more strongly than this.

The problem is many of us here gradually realised this and spent ages learning and making mistakes ....

My best advice is don't eat ANYTHING with wheat or gluten ... and this includes the "gluten-free" stuff you get with modified wheat starch, indeed try and forget anything like gluten-free pasta or bread for the first weeks.

The more gluten-free you are the faster you see results .... the faster you clean out your system which in effect ha been building up for years the faster your villi heal.

Many of us had initial problems just because the villi are so badly damaged and many people find milk and soy irritants... BUT many people then find they can reintroduce them especially once we are healed and able to cope.

I know this sounds really restrictive BUT its not after 2 weeks you hardly notice but.. don't buy anything in a packet/tin/jar with ANYTHING you are not sure about. At first its really hard to tell ....especially if its a trace of gluten but it can set your whole recovery back weeks.

Once you reach a comfortable plateau you will FEEL the difference ... I promise... not overnight but you will probably look back and reconise lots of annoying symptoms you never connected that go away like headaches, mood swings and stuff.... please if you can just trust us on this .... read posts about brain fog and other symptoms and many of us started off as lot as you....

When you reach the plateau you can experiment ... for instance you can try new foods, gluten-free breads and stuff which might have CC or 200 ppm ... most of us here find we can't eat it or can't eat it regualrly but once you are on this plateax you will know really quickly if you make a mistake (and we all do) and with time it FEELS different... but also the recovery time is much much less.....

I know this sounds hard but it really isn't, its just a change of habits ... we have all done it and most of us started off badly because noone said this at the beginning ... infact poor nutritionists can really set you back because they tend to have outdated material and until you get more experience its hard to tell a good one from a bad one ...

read about cross contamination... if you possibly can make your whole kitchen gluten-free.... if you don't you will have an accident sooner or later ... we all did!

Family support is a real boon... Your family and those you live with need to realise this and support you. I crumb will set you back... and especially early on you can go from being poisioned by a crumb here and CC there and never really get better. Its crucial to have full support of ANYONE using the kitchen .. including pets who might have dog biscuits etc. .. avoid handling anything with gluten .. it sounds extreme but many of us have to make a mental switch and view it as a supertoxic poision... not something you want to be around.

and finally.. you will make mistakes ... we all do and did. Try not to let them get you down... get that family support if you can and come and moan here if you need.. we understand!

[Deb O (UK)]

Thanks gfp, I really appreciate the time you've taken to reply; some sound advice that I would never have thought of - yes, if I follow this advice it could save me lots of heartache (not to mention stomach-ache!!)

Have a good weekend, Deb

[gfp]

Thanks gfp, I really appreciate the time you've taken to reply; some sound advice that I would never have thought of - yes, if I follow this advice it could save me lots of heartache (not to mention stomach-ache!!)

Have a good weekend, Deb

You probably would ... just slowly and after wasting a lot of time like most of us.

When I started off I was optimistic ... I figured I'd be a borderline case.... be able do do oats etc. and dist the bread of a burger. I quickly realised the big stuff like the bread on a burger can't be wiped off but little things kept biting me back! The problem is this is just when you don't need it.... when we are at our most confused and vulnerable and being glutened on top of that can be horrid not to mention introducing doubts about diagnosis and stuff.

I'm sure its confusing right now but I promise it gets easier and easier ... most of us old hands have to give ourselves a pinch every so often because it becomes so second nature we tend to get careless. This might sound weird but I can scan products in seconds, it becomes second nature ... and automatically guess what is a good bet to read the label and what is not.

Lots of stubborn people like me suffered without needing to for a few months and I wish someone had convinced me at diagnosis to start clean and then see what you can eat and not do what I tried and start incrementally cutting obvious, then less obvious things out. It takes so much longer that after 6 months I started afresh totally clean .. 6 months wasted ....

There are 3 groups of food I classify:

1) Generally risk free: Which is all fresh fruit/veg and meats, herbs and whole spices etc.

3) Is things obviouskly out like bread and pasta.. pizza and cakes and biscuits....

Group 2 is the gotcha group....

All non special gluten-free soy sauce is made with 50% wheat ... I mean its hardly obvious is it.. so this then extends to any cook in sauce type thing with soy sauce in it! Thankfully labelling is much clearer now

Then wheat derivatives are used in lots of strange places... the dextrose (sugar) is used in many cooked hams and sliced chicken.... you wouldn't think it but there are so many places it can hide.

In the US most (or all at last count) dextrose and maltodextrose was from corn.. in the UK much of it is wheat derived .... this is the longest list... by far and most prepared foods are suspect. Even the UK definition of gluten-free is suspect because its an old standard from the WHO which states 200ppm or below hence always check for wheat free as well.

Analyses vary in quality ... the human body is way more sensitive than the common tests .... hence why I say once you are gluten-free for a while you will know really quickly when you slipped up.... sweats, headaches and a feeling we call brain-fog.... but you have to really experience this to appreciate it.... and sometimes others will spot it in us....

This is why I really urge you to be 100% and stick to absolute certainties at first. Its logical but most of us do the reverse because it seems easier... honestly its not.

Good luck and good weekend

[Deb O (UK)]

You probably would ... just slowly and after wasting a lot of time like most of us.

When I started off I was optimistic ... I figured I'd be a borderline case.... be able do do oats etc. and dist the bread of a burger. I quickly realised the big stuff like the bread on a burger can't be wiped off but little things kept biting me back! The problem is this is just when you don't need it.... when we are at our most confused and vulnerable and being glutened on top of that can be horrid not to mention introducing doubts about diagnosis and stuff.

I'm sure its confusing right now but I promise it gets easier and easier ... most of us old hands have to give ourselves a pinch every so often because it becomes so second nature we tend to get careless. This might sound weird but I can scan products in seconds, it becomes second nature ... and automatically guess what is a good bet to read the label and what is not.

Lots of stubborn people like me suffered without needing to for a few months and I wish someone had convinced me at diagnosis to start clean and then see what you can eat and not do what I tried and start incrementally cutting obvious, then less obvious things out. It takes so much longer that after 6 months I started afresh totally clean .. 6 months wasted ....

There are 3 groups of food I classify:

1) Generally risk free: Which is all fresh fruit/veg and meats, herbs and whole spices etc.

3) Is things obviouskly out like bread and pasta.. pizza and cakes and biscuits....

Group 2 is the gotcha group....

All non special gluten-free soy sauce is made with 50% wheat ... I mean its hardly obvious is it.. so this then extends to any cook in sauce type thing with soy sauce in it! Thankfully labelling is much clearer now

Then wheat derivatives are used in lots of strange places... the dextrose (sugar) is used in many cooked hams and sliced chicken.... you wouldn't think it but there are so many places it can hide.

In the US most (or all at last count) dextrose and maltodextrose was from corn.. in the UK much of it is wheat derived .... this is the longest list... by far and most prepared foods are suspect. Even the UK definition of gluten-free is suspect because its an old standard from the WHO which states 200ppm or below hence always check for wheat free as well.

Analyses vary in quality ... the human body is way more sensitive than the common tests .... hence why I say once you are gluten-free for a while you will know really quickly when you slipped up.... sweats, headaches and a feeling we call brain-fog.... but you have to really experience this to appreciate it.... and sometimes others will spot it in us....

This is why I really urge you to be 100% and stick to absolute certainties at first. Its logical but most of us do the reverse because it seems easier... honestly its not.

Good luck and good weekend

Thank you so much ~ you are really helping me. I'm so keen to get started now as I've felt really 'yuck' this weekend. What you say is really helpful to me as I can see a way to 'cut through' all of the gluten-free stuff which can be overwhelming at first - to stick to natural gluten-free foods makes it much simpler. Hopefully I'll lose some weight this way too!

[Carriefaith]

Try this recipe for breadsticks, they are really soft like ones made from wheat

Soft and Chewy Breadsticks

1/4 cup shorting

3 tablespoons honey

2 eggs

1 tablespoon yeast

1 cup unflavored yogurt (So Nice makes a dairy free, gluten free yogurt)

1/2 cup potato starch

1 1/2 cups cornstarch

1/2 teaspoon baking soda

2 teaspoons baking powder

2 teaspoons xanthan gum

3/4 teaspoon salt

3/4 teaspoon vinegar

Topping: Kosher salt and/or other herbs, sesame seeds, ect.

Directions: Preheat oven to 350. Combine all ingredients. Mix well to remove lumps. The dough will be quite wet. Place dough in a pastry bag with a large round tip (or use a plastic lunch bag with a bit of a corner cut off). Pipe dough into long strips (5-6 inches is nice) on greased baking sheet. Sprinkle with toppings. Bake 10-12 minties, until golden brown.

There is also a long list of recipes that should get you started if you like those foods:

Open Original Shared Link

[Deb O (UK)]

Try this recipe for breadsticks, they are really soft like ones made from wheat

Soft and Chewy Breadsticks

1/4 cup shorting

3 tablespoons honey

2 eggs

1 tablespoon yeast

1 cup unflavored yogurt (So Nice makes a dairy free, gluten free yogurt)

1/2 cup potato starch

1 1/2 cups cornstarch

1/2 teaspoon baking soda

2 teaspoons baking powder

2 teaspoons xanthan gum

3/4 teaspoon salt

3/4 teaspoon vinegar

Topping: Kosher salt and/or other herbs, sesame seeds, ect.

Directions: Preheat oven to 350. Combine all ingredients. Mix well to remove lumps. The dough will be quite wet. Place dough in a pastry bag with a large round tip (or use a plastic lunch bag with a bit of a corner cut off). Pipe dough into long strips (5-6 inches is nice) on greased baking sheet. Sprinkle with toppings. Bake 10-12 minties, until golden brown.

There is also a long list of recipes that should get you started if you like those foods:

Open Original Shared Link

Fantastic! Thanks Carrie

[Carriefaith]

I hope you enjoy them I really like those bread sticks. I'm going to have to make them...

[Sara-UK]

Hi debs,

I'm in the UK too so just thought I'd say hi. Posted a huge message somewhere else, so I won't repeat it again!

Did you go to your Dr then to get the test?

I'd been to mine on and off with diahrroea for weeks, and just got fobbed off, so bought an IgG test myself.

Don't know if I should now go to the Drs with the results, or just carry on and do my own thing!

Sara

x

[gfp]

Hi debs,

I'm in the UK too so just thought I'd say hi. Posted a huge message somewhere else, so I won't repeat it again!

Did you go to your Dr then to get the test?

I'd been to mine on and off with diahrroea for weeks, and just got fobbed off, so bought an IgG test myself.

Don't know if I should now go to the Drs with the results, or just carry on and do my own thing!

Sara

x

Hope you don't mind me answering... I was diagnosed in the UK afterall.

The problem with the UK medical system is you won't get any recognition until a Dr at least backs you up.

If you go into hospital for instance they won't even consider your intolerance if you let them know its done at home.

There are ways round this but its a bit dishonest... like claiming you got diagnosed elsewhere in Europe.

Another way is to find a Dr. who is knowledgeable and sympathetic and wil take the test into consideration along with response to diet.

The third way is go through the whole rigmerole of poisioning yourself deliberatly for a certificate.

Approval by a Dr will bring you other things such as prescription items for gluten-free.

Quite how much this ois worth it is a financial issue.. for I think £80 a year or thereabouts you can buy a subscription and any items you are prescribed in the year are included.

On the other hand much of the prescibable stuff is pretty crap.... some NHS trusts accept larger lists and others not. On the other hand you can buy a gluten-free breadmaker for half this and the remaining £40 of gluten-free flour makes a lot of bread!

Lying about diagnosis might seem extreme ... but if you are rushed into hospital for something you won't get a gluten-free diet unless you have a Dr's cert. Again this is of dubious value in itself... the horror stories of NHS ideas of gluten free are pretty frequent! My mum got a steak and kidney pie (whilst actually hospitalised for celaic related symptoms and tests after diagnosis) and when she enquired she got told the chef had cut off the crust so it was OK.... (I joke not....) disregarding this she asked about the gravy.... and was told it was only a teaspoon or so of flour anyway!

[gfp]

Thank you so much ~ you are really helping me. I'm so keen to get started now as I've felt really 'yuck' this weekend. What you say is really helpful to me as I can see a way to 'cut through' all of the gluten-free stuff which can be overwhelming at first - to stick to natural gluten-free foods makes it much simpler. Hopefully I'll lose some weight this way too!

Possibly on the weight ... once you start to get better you will find you are adsobing far more from your food.

Meanwhile I would seriously not worry about substitutes, especailly during summer. Leave them for later when you get more proficient at spotting symptoms. Obviously be careful about salad dressings unless you make your own...

Simply having the same meal without bread will help the weight loss if you tend to (as my family) have gravies and such to have with bread and pie crusts (Lancs origin)

if you need packed lunches then salads are pretty much as easy as sandwiches... etc.

To save time you can do things like make double the rice and use half as the base for a rice salad etc. (be careful about storing cold rice - treat it like meat regarding chilling etc.)

Snackwise make up some dips and crudites etc. always good for summers... if you wanna loose weight then avoid cream based ones (obviously) but you can make your own hummous and yogourt based dips very easily ...

If your only moderate on the weight thing one thing I find great for salads is grilled courgettes and aubergines brushed in olive oil, herbs and garlic... chuck them in a salad bowl with some other salad stuff and you don't even need extra dressing.

Another great summer thing is roast a chicken and do an extra one at the same time.... (I prefer this to the unnatural turkey sized chickens in supermarkets) .. I use the Jamie Oliver stuffing herbs and garlic under the skin method. (though I did this before him honest ....)

Then you have chicken salad base... the legs are excellent as packed lunches ... add some to some precooked rice for stirfry (make sure if you use soy sauce its gluten-free) and finally you can boil the bones and carcass and make soup... not forgetting the great British dish of curries etc. (check but many Pataks and Curry club pastes are gluten-free) for time saving... not to mention one of my favoirites chicken risotto.

[taz sharratt]

Hi everyone

following 1 positive antibody test recently my doc said he would refer me to the hospital's dietician as I need to go gluten-free. That was 3 wks ago - I phoned doc's receptionist last wk and was told the referral letter had been sent. I phoned hospital today who told me they haven't received a letter I was told to phone the doctor again and "not to worry" because when they receive the letter I will be offered an appointment within 13 wks !! When I phoned the doctor I was told that in fact my letter has only just been sent off.

When I came off the phone I felt like crying, but didn't. You know how it is - it's so frustrating. I feel I cannot wait until November to see a dietician. I think I ought to 'go it alone' and start eating gluten-free, but it feels scary because I realise that once I start, then there's no going back and I'm a little anxious that I won't 'do it right'.

Any tips out there for starting the gluten-free diet on your own, without professional advice? I'm particularly interested in finding a bread substitute that is tasty - any recommendations within the UK?

It's a lovely sunny afternoon out there (central England), I'm enjoying watching my little girl play!

Look forward to hearing from anyone who can help, Deb

[c/quote]celiac uk are a really good source of info. www.coeliac.org.uk or tel 08704448804 or 01494437278 they ae really good and really helpfull, if you gaive them a ring a trained dietician will ring you back. also you can have the food and drink directory £8 its worth its wieght in gold it has la com[plete list of food that is safe fromm most stores tsect , sinsburys, marks and spanser, asda and other products. you will NEED this book. uk celiacs call it the bible its a must

[Deb O (UK)]

Possibly on the weight ... once you start to get better you will find you are adsobing far more from your food.

Meanwhile I would seriously not worry about substitutes, especailly during summer. Leave them for later when you get more proficient at spotting symptoms. Obviously be careful about salad dressings unless you make your own...

Simply having the same meal without bread will help the weight loss if you tend to (as my family) have gravies and such to have with bread and pie crusts (Lancs origin)

if you need packed lunches then salads are pretty much as easy as sandwiches... etc.

To save time you can do things like make double the rice and use half as the base for a rice salad etc. (be careful about storing cold rice - treat it like meat regarding chilling etc.)

Snackwise make up some dips and crudites etc. always good for summers... if you wanna loose weight then avoid cream based ones (obviously) but you can make your own hummous and yogourt based dips very easily ...

If your only moderate on the weight thing one thing I find great for salads is grilled courgettes and aubergines brushed in olive oil, herbs and garlic... chuck them in a salad bowl with some other salad stuff and you don't even need extra dressing.

Another great summer thing is roast a chicken and do an extra one at the same time.... (I prefer this to the unnatural turkey sized chickens in supermarkets) .. I use the Jamie Oliver stuffing herbs and garlic under the skin method. (though I did this before him honest ....)

Then you have chicken salad base... the legs are excellent as packed lunches ... add some to some precooked rice for stirfry (make sure if you use soy sauce its gluten-free) and finally you can boil the bones and carcass and make soup... not forgetting the great British dish of curries etc. (check but many Pataks and Curry club pastes are gluten-free) for time saving... not to mention one of my favoirites chicken risotto.

Wow - thanks for this!! Some great suggestions - I hadn't thought of stirfrying precooked rice like that, I'll try it. And I didn't know that Pataks are gluten-free - now the diet doesn't sound so daunting!!

(Sorry for including the full-length of your message but I haven't figured out how to edit it yet!!)

So are you living in the UK? I appreciate the lancashire tendency towards pies and gravy etc - I live in the Midlands and was reared on meat and 2 veg dinners with plenty of gravy of course!!

Deb

[Deb O (UK)]

Hi debs,

I'm in the UK too so just thought I'd say hi. Posted a huge message somewhere else, so I won't repeat it again!

Did you go to your Dr then to get the test?

I'd been to mine on and off with diahrroea for weeks, and just got fobbed off, so bought an IgG test myself.

Don't know if I should now go to the Drs with the results, or just carry on and do my own thing!

Sara

x

Hi Sara

so glad you said 'Hi'!! I've just read your other post and am excited to learn that you live around Nottingham, which is not so far from me. I live in South Staffs, on the West Mids border. You'll be familiar with the same health systems, products, food trends etc as me.

I've been having IBS type symptoms for years (a GP told me it was IBS about 12 yrs ago). I went to my (relatively new) GP a few weeks ago as I was getting fed up with the symptoms. He's been great - he volunteered to test my blood for all sorts of things including coeliac, which I'd not heard of before. When the results came back, he explained to me that the coeliac test comprises a panel of 3 antibody tests and that scoring positive on 2 of them gives a dx of coeliac. I scored positive on 1 so he has told me to go gluten-free and has referred me to the hospital to see a dietician.

Whilst waiting I've done lots of research, esp from this site and tho I've got soem excellent advice, I was also becoming confused about biopsies etc. I went back to the GP this week and talked this through with him. He told me that he could refer me to a gastroenterologist at hosp, but they will make me go gluten-free with dietician before considering doing a biopsy so the GP believes that there's no point going down this path - he said that the 1 positive antibody result that I got is enough indication for gluten-free and the diet should confirm this. He made a lot of sense. I'm waiting to see dietician and currently psyching myself up for the diet

If the diet proves that I need to be gluten-free then this is what I'll do and I'll tell people I'm gluten-intolerant. Later down the path I will ask the GP about prescriptions etc. but having read gfp's comment about that, then I might not bother with that anyway. Unless I'm missing anything, I don't think there's any need for further confirmation / dx.

I've never heard of the test that you've used. It might be an idea to see your GP and ask for a test for coeliac.

Good luck with it all Sara and please keep in touch!!

Deb x

[gfp]

(Sorry for including the full-length of your message but I haven't figured out how to edit it yet!!)

You can just delete anytrhing between the two square bracketed quotes.

You can add multiple quotes by sticking QUOTE in square brackets followed by /QUOTE at the end.

So are you living in the UK? I appreciate the lancashire tendency towards pies and gravy etc - I live in the Midlands and was reared on meat and 2 veg dinners with plenty of gravy of course!!

Deb

Nope .. Paris, France at the moment... I more or less left Lancs at 16 when I left home and spent most of my time bumming about in Cumbia ... (as was then) and left the UK at 21... (now 38) ... though i did move back for 2 years and visit on holidays etc....

Meanwhile I have lived in every continent except Australia and Antarctica and Paris is the closest I have been to the UK (excepting Norway) in that time.

I still once in a while makes stewed steak or Lancashire hotpot though...

also you can have the food and drink directory £8 its worth its wieght in gold it has la com[plete list of food that is safe fromm most stores tsect , sinsburys, marks and spanser, asda and other products. you will NEED this book. uk celiacs call it the bible wink.gif its a must biggrin.gif

Bear in mind that only companies that PAY are included and that CUK doesn't test anything but relies on the manufacturers. Its also pretty biassed towards substitute foods as CUK rake in extra money by selling ad space in the book.

In my opinion with better labelling laws its becoming a bit redundant ... largely also because most of the supermarkets will give you their own list and inform you directly if any product is contaminated.

I think the worst aspect (from watching my mum struggle) is it doesn't really stress the naturally gluten free diet and keeps pushing the products of its paying customers .(This is old info, I have the last two sent by my mum but they are still in the plastic packages). this doesn't mean its useless.. just you should read it with that bias in mind.

My mum ended up using it as a bible... in other words if it was listed in the book then she would eat it and if not she wouldn't ... so this included many fresh gluten free products she avoided because she didn't know ... and her diet ended up being 100% processed food that was specifically included in the diary.

Also many of the items labelled gluten free are not .. CUK is rabidly against gluten free meaning gluten-free. They have spent a lot of money campaigning on behalf of their sponsors as opposed to members to revoke the EU labelling law of the requirment to list gluten on packaging.

The supposed logic being we are too stupid to read labels (paraphrasing their nutritionist here) and should rely on the "directory".

Again just in my opinion the reason for this is because this makes the directory more or less redundant...

CUK are also firmly pro-biopsy and accept no other diagnosis (sponsorship?) and do not agree with research for neurological or physchological problems, even though they co-funded some of the conclusive research which they hide from their members. They frequently publish deliberatly misleading items .. legally covered as interviews so they can basically tell lies and say its opinion.... the one that broke the camels back for me was the depression article... firstly because CUK co-funded a study that proved a link and then buried the study and secondlly because the quite on the page was something like "coelaics get depressed because they don't have the same choice of foods as other people"....

If you can take the time and seperate the wheat from the chaff (pun intended) then the directory and crossed grain are both useful but they are equally misleading to the newly diagnosed.

[Deb O (UK)]

Hi Taz

thanks for the message about coeliac UK. I got on to them a couple of days ago and I ordered a copy of the 'Bible' as I figured I'd not be able to do without it

How are you? I read a post from you last week when you'd been to docs and you was feeling low ~ I hope you feel brighter now.

Deb

If you can take the time and seperate the wheat from the chaff (pun intended)

Thanks for the post. Lots to take on board and I'll bear all this in mind.

I can see that I've managed to condense your message, but I still haven't got it right!

Deb

I really messed up that last post!!

There was a message from me for Taz and then I tried to send a separate one to gfp and failed miserably!!

I might get the hang of this editing thing eventually

[Sara-UK]

Hello! Lots of messages since I last looked!

Well..I lived in Nottingham for a few years while I did my degree and PhD, now I live nearer Chesterfield but I still work at the University in Nottingham.

Yep, meat and 2 veg sounds like me! So glad I'm not intolerant to meat! (was aveggie for a few years, and wouldn't want to have to go back1).

what kind of blood test is it the Dr did for you?

I don't think I've got celiac (keep writing celica! had to sell mine, must have it on the brain!) - disease - it sounds too severe for me!

The blood test I did tests for IgG antibodies against 113 different foods and cost me about 250 quid.I seem to read conflicting things on celiacs - just because I'm intolerant to wheat/gliadin (as in have IgG antibodies), doesn't mean I have that does it? That's an autoimmune disease isn't it? just flicked through my booklet that I got with the test results, and it says that the test only looks for antibodies against the food, not the self antibodies that celiacs have, though it says if you are intolerant to wheat or gliadin then you might want to see your doctor for more tests. I'll see what the lady says - if she says to go, then I'll go.

do you not just get this feeling sometimes that you are wasting their time? and they belittle you and make you feel like you are making it up?!

I've got a PhD in genetics and the only time I've ever seen it make a difference was when I went to the Drs last time to see if I should change or stop my contraceptive pill, see if it made any difference to my migraine..then it was all taking me serously and asking me what I was doing etc! not on really. Sure they do see lots of time wasters etc, but with the internet now lots more people can do their own research and know more about themselves then Drs do!

I think the rest of my family should do some sort of test too - they've all got all sorts of symptoms.

Yeah, think I'll try and go for more naturally gluten free stuff (though would still like bread1) - discovered quinoa and falafel in the last week - can't believe I've not had them before! yum!

Polenta I didn't like at all though.

any other weirdo suggestions?

So, do I need to get some sort of certificate for if I ever do go into hospital and have to eat their grim food?

I still don't get how the system works in america - do you just go and see all the dfifferent types of Drs when you want to, or do you have to be referred by your normal family dr?

need a cup of tea (with soya milk! wouldn't be so bad if it was just wheat stuff...but milk and eggs...in everything!!)

Sara

[gfp]

Hello! Lots of messages since I last looked!

Well..I lived in Nottingham for a few years while I did my degree and PhD, now I live nearer Chesterfield but I still work at the University in Nottingham.

Yep, meat and 2 veg sounds like me! So glad I'm not intolerant to meat! (was aveggie for a few years, and wouldn't want to have to go back1).

what kind of blood test is it the Dr did for you?

I don't think I've got celiac (keep writing celica! had to sell mine, must have it on the brain!) - disease - it sounds too severe for me!

At the risk of teaching my gradmother how to suck eggs (given your area of research) ...

I had no symptoms until I was mid 20's... indeed I was rather known as the iron stomachand even then it took a while... my mother was diagnosed at 65... and only 10 yrs ago was laughing at me for suggesting wheat might cause a prob. (long story covered elsewhere on here) and to be honest that is exactly what I thought .. can't be me.. sounds to much, I'm just insensitive....

The blood test I did tests for IgG antibodies against 113 different foods and cost me about 250 quid.I seem to read conflicting things on celiacs - just because I'm intolerant to wheat/gliadin (as in have IgG antibodies), doesn't mean I have that does it? That's an autoimmune disease isn't it? just flicked through my booklet that I got with the test results, and it says that the test only looks for antibodies against the food, not the self antibodies that celiacs have, though it says if you are intolerant to wheat or gliadin then you might want to see your doctor for more tests. I'll see what the lady says - if she says to go, then I'll go.

I seriously think you are in a better position to read up on this yourself unless you can somehow use your qualifications to talk to the Royal Hallamshire group....

do you not just get this feeling sometimes that you are wasting their time? and they belittle you and make you feel like you are making it up?!

In the words of slartibartfarst in hitchhickers.. nope that just perfectly normal paranoia.... but seriously.. yes!

I've got a PhD in genetics and the only time I've ever seen it make a difference was when I went to the Drs last time to see if I should change or stop my contraceptive pill, see if it made any difference to my migraine..then it was all taking me serously and asking me what I was doing etc! not on really. Sure they do see lots of time wasters etc, but with the internet now lots more people can do their own research and know more about themselves then Drs do!

I think the rest of my family should do some sort of test too - they've all got all sorts of symptoms.

Honestly get the information yourself .. you are probably more qualifed than the GP but you obviously need more reading material.. I'll try and remedy that.

My ex-wife an analytical chemist once had to have PCB screening and the hospital labs ended up asking her how to do an sample prep. In the end she wrote the method for them as well.

Yeah, think I'll try and go for more naturally gluten free stuff (though would still like bread1) - discovered quinoa and falafel in the last week - can't believe I've not had them before! yum!

Another good use of quinoa is as a cous-cous substitute...

Polenta I didn't like at all though.

Try flavored polenta as opposed to just corn meal... mushrooms and cheese etc. can be added to the polenta and

any other weirdo suggestions?

Yeah.. if you have stacks of polenta left and you don't like it then try making corn bread. is that weird enough?

So, do I need to get some sort of certificate for if I ever do go into hospital and have to eat their grim food?

This is something to consider yourself.....

Bear in mind even with the cert you might not be getting "gluten free" but rather "no obvious gluten".

much safer to have your own food.

edits:

Dr M Hadjivassiliou, Department of Clinical Neurology, The Royal Hallamshire Hospital, Glossop Road, Sheffield S10 2JF, UK;

If you can use your qualifications and connections to get anywhere close then this is THE place in the UK.

Do a google search on Hadjivassiliou and you will have the links to the papers you should read.

[Sara-UK]

Oooh thanks for all the info!

I'll get in touch with them, or just read his papers andpretend I'm interested in it from a scientific point of view!

I can't put the cheese with the polenta, if I'm supposedly dairy intolerant too! never realised how much cheese I ate til I can't have it anymore..the worst thing, after bread! I did but some fake meltable cheese, but nearly made me sick!

I shall get reading now before I go home!

thanks

Sara

[Sara-UK]

Have just printed tonnes of papers out of his - thanks! Mainly on neurology (not my field at all! but I'll muddle through) - somewhere on one website it said he runs a weekly clinic..I'll read his stuff then try and think of something intelligent to say mail him about!

Thanks

Sara

[gfp]

Have just printed tonnes of papers out of his - thanks! Mainly on neurology (not my field at all! but I'll muddle through) - somewhere on one website it said he runs a weekly clinic..I'll read his stuff then try and think of something intelligent to say mail him about!

Thanks

Sara

Make sure its intellegent and use any academic connections you can muster, he's notorious for not talking to the general public! (with good cause but that's another story - just warning you not suggesting you'd not write something intellegent)

Being at a uni you probably have access to periodicals... there is lots online but you will find he references meticulously (like a scientist, not a MD) and you will probably get good milage out of following the ref's.

Also for stuff like pubmed and the Lancet etc. if you don't have an account try and find someone at uni can give you access... its usually pre-paid and covers staff.