Coeliac?

Kebabkid

My wife and son are wheat-intolerant and we use quite a few GF/WF products, but beware as they are also loaded with sugars.

Biona Organic products are pretty good and their pasta is decent, but the best alternative we've found to wheat is SPELT. It's an ancient grain and you can buy spelt flour and pasta from most places. We tend to make our own spelt bread as a spelt loaf in Planet Organic costs £3.50!!

We have a family of friends whereby the husband is allergic to eggs/poultry, the daughter to wheat and dairy and the son to fish - the wife is fine - try cooking for the buggers. It's a sodding nightmare and most ready made products have egg white, gluten or wheat!

Re:Chinese food, fresh rice noodles are a safe bet and there are plenty of w/free sauces and condiments on offer.

I hope you get it sorted Mike.

TTony

stickyfiddle said:

 Indian food,

I've actually found Indian food to be one of the most reliably GF.  OK, so you have to avoid the obvious breads, but the rest is pretty safe, in my experience.  Had a fairly detailed conv with our local Indian rest/takeaway (after I got diagnosed, we stopped ordering from them, they phoned to ask why!) and they've always ensured everything has been GF.  I don't think it's a major change to any recipies for them either.

Pizza Express now do a full GF menu too.

Was in St Lucia for a lengthy holiday a year or two after the diagnosis.  Decided that trying to explain what gluten was and why I needed to avoid it would be pretty difficult, so the plan was to be "sensible" and avoid any obvious gluten-containing foods.  Got a bit braver (or more reckless) and ate a croissant one day.  No problem.  Ate a couple of them.  No problem.  Ate a pizza.  No problem.

Makes me think that at least part of the problem is the western/European food manufacturing processes.  Additives everywhere.  Quality ingredients nowhere (we demand cheap, we get cheap) ...

mike_l

TTony said:

 

mike_l said:

Looking through the list I can count 44 symptoms I get (even occasionally).

Whereas I struggle to find 10!

I did use to get eczema but that just upped and disappeared (of its own accord) many years ago ... don't miss it.

Problem is the symptoms cover a bunch of illnesses.

Coeliac, Crohn's, Ulcerative Colitis, irritable bowel etc.

Sambostar

And a thousand more.

I think you know when you have coeliac, or at least when it becomes so bad it is affecting your health.

stickyfiddle

TTony said:

stickyfiddle said:

 Indian food,

I've actually found Indian food to be one of the most reliably GF.  OK, so you have to avoid the obvious breads, but the rest is pretty safe, in my experience.  Had a fairly detailed conv with our local Indian rest/takeaway (after I got diagnosed, we stopped ordering from them, they phoned to ask why!) and they've always ensured everything has been GF.  I don't think it's a major change to any recipies for them either.

Pizza Express now do a full GF menu too.

Was in St Lucia for a lengthy holiday a year or two after the diagnosis.  Decided that trying to explain what gluten was and why I needed to avoid it would be pretty difficult, so the plan was to be "sensible" and avoid any obvious gluten-containing foods.  Got a bit braver (or more reckless) and ate a croissant one day.  No problem.  Ate a couple of them.  No problem.  Ate a pizza.  No problem.

Makes me think that at least part of the problem is the western/European food manufacturing processes.  Additives everywhere.  Quality ingredients nowhere (we demand cheap, we get cheap) ...

You definitely wonder. Whatever the diagnosis, my symptoms started with cheap bread, then moved to all packet bread and cakes, but I was fine with homemade bread until very recently, and that's still far better than shop bought in terms of its effects.

ToneControl

stickyfiddle said:

ToneControl said:

WASP = White Anglo saxon protestant. Not used much outside the USA. 

Not really accurate here, since Irish catholics have even more prevalence AFAIK

Coeliac is more common in North west Europe, since exposure to wheat was much later than in the middle east, so less chance to eliminate it from the gene pool 

With coeliac, you eventually end up with smooth intestine walls, and the inability to absorb food, and your poo is all fatty and smelly like baby poo. The villi don't usually grow back if you leave it that long

Ah, makes sense. Out here everything is bread, which is a bit tricky They've had it for thousands of years, as opposed to hundreds for us Europeans. Indian food, Pakistani food, Egyptian food, lebanese food, turkish food, Jordanian food- bread is often the spoon for most of them!

conversely many arabs can't drink milk you know, hence the yoghurts

northern Europeans have the ability to digest milk as adults

ToneControl

Kebabkid said:

My wife and son are wheat-intolerant and we use quite a few GF/WF products, but beware as they are also loaded with sugars.

Biona Organic products are pretty good and their pasta is decent, but the best alternative we've found to wheat is SPELT. It's an ancient grain and you can buy spelt flour and pasta from most places. We tend to make our own spelt bread as a spelt loaf in Planet Organic costs £3.50!!

We have a family of friends whereby the husband is allergic to eggs/poultry, the daughter to wheat and dairy and the son to fish - the wife is fine - try cooking for the buggers. It's a sodding nightmare and most ready made products have egg white, gluten or wheat!

Re:Chinese food, fresh rice noodles are a safe bet and there are plenty of w/free sauces and condiments on offer.

I hope you get it sorted Mike.

Spelt contains gluten I am afraid

Buckwheat doesn't btw

I've been poisoned twice by rice noodles, too risky I think

if you do get diagnosed, there are loads of good products available on prescription, get a prepayment card and you save a fortune, I will list them in a min

breadfan

The most important advice I could give you is; don't self diagnose - get yourself tested.

An endoscopy is the only way to 100% diagnose. The blood test isn't accurate enough, it's just an indicator.

It's important to know that you'll need to be consuming gluten for about a month before the endoscopy, or you'll risk getting misdiagnosed, as the gut can start to heal itself quite quickly. 

You'll find thousands of hours of reading online, especially since the diet has become a fad for many, but your best source of information is the Coeliac Society website. 

The awareness of the disease & the selection of foods & drinks available has improved incredibly in the past few years. 

Cross contamination when eating out is still the toughest part of diet, for me.

By the way, Green's Gluten Free Pilsner is, by some distance, the nicest gluten free beer out there.

stickyfiddle

ToneControl said:

Spelt contains gluten I am afraid

Buckwheat doesn't btw

I've been poisoned twice by rice noodles, too risky I think

if you do get diagnosed, there are loads of good products available on prescription, get a prepayment card and you save a fortune, I will list them in a min

Won't help a huge amount as I'm in Abu Dhabi so no NHS, but any good brands will be useful. There is a big organic food place that does loads of alternative flours and whatnot, so I'm lining up recipes to try if I need to.

ToneControl

TTony said:

stickyfiddle said:

 Indian food,

I've actually found Indian food to be one of the most reliably GF.  OK, so you have to avoid the obvious breads, but the rest is pretty safe, in my experience.  Had a fairly detailed conv with our local Indian rest/takeaway (after I got diagnosed, we stopped ordering from them, they phoned to ask why!) and they've always ensured everything has been GF.  I don't think it's a major change to any recipies for them either.

Pizza Express now do a full GF menu too.

Was in St Lucia for a lengthy holiday a year or two after the diagnosis.  Decided that trying to explain what gluten was and why I needed to avoid it would be pretty difficult, so the plan was to be "sensible" and avoid any obvious gluten-containing foods.  Got a bit braver (or more reckless) and ate a croissant one day.  No problem.  Ate a couple of them.  No problem.  Ate a pizza.  No problem.

Makes me think that at least part of the problem is the western/European food manufacturing processes.  Additives everywhere.  Quality ingredients nowhere (we demand cheap, we get cheap) ...

it's a complex mechanism

the problem is that it's not an allergy, and people assume it's similar

if you eat some gluten, your body thinks it's being attacked and starts producing antibodies

these antibodies attack the tissue that the gluten is entering through (e.g. the villi, or the skin)

AFAIK: 

If you don't eat gluten at all for a few months, the number of antibodies drops to a very low level

if you then eat a trace of gluten, it's like having a vaccine, your body fires up and creates loads of antibodies

If you then eat some gluten soon after, you'll get a very bad reaction

Whereas if you are very careful for a long time, and have very few antibodies, then eat quite a bit of gluten on one day, the symptoms may not be all that bad, since your body does not create the antibodies instantly, it's not an instant allergy reaction

So nothing to do with quality of ingredients, more to do with your antibody levels.

This is why, if you've stopped eating gluten, the medics make you eat it again for several weeks to get the antibodies and inflammation back again before they do the tests

ToneControl

other safer bets:

Thai food

most Malaysian food

grilled meats and rice, so kebabs are good, should be easy to find in the middle east?

breadfan

With regards to Indian food - I've had many, many good experiences with it, but some bad ones, too.

Some spices can be diluted down with wheat flour, so it's advisable to check with the manufacturer re their gluten free status. (asafoetida almost always contains wheat flour.)

TTony

ToneControl said:

Best GF beer is Daura Damm

it is actually quite a good lager:

http://dauradamm.com/

Thanks for the recommendation.  Pretty sure I've seen it advertised (probably in the society's magazine).  Will get some ordered.

breadfan said:

By the way, Green's Gluten Free Pilsner is, by some distance, the nicest gluten free beer out there.

I shall hunt some of that out too.

ToneControl said:

if you do get diagnosed, there are loads of good products available on prescription, get a prepayment card and you save a fortune, I will list them in a min

That depends greatly on the policy of your local health authority.

I *used* to be able to get lots of stuff on prescription, and had the prepayment card for the purpose.  But they started cutting back (budget contraints I guess) to the stage where I can now only get bread flour mix and bread.  So I don't bother with the prescription food any more, which is a shame because the Juvela pizza bases used to be quite handy, and I've not found them anywhere off-prescription.

ToneControl said:

Whereas if you are very careful for a long time, and have very few antibodies, then eat quite a bit of gluten on one day, the symptoms may not be all that bad, since your body does not create the antibodies instantly, it's not an instant allergy reaction

So nothing to do with quality of ingredients, more to do with your antibody levels.

Whereas whereas ... I'm strictly non-gluten to the extent that we don't even have gluten foodstuffs or ingredients in the house and only eat out in places that we absolutely trust.  I ate 2 slices of bread that should have been GF but wasn't as part of a meal out in a trusted place (mistakes happen) and within 2 hours I was throwing it all back up again.

ToneControl

this is the 2 year old list of prescribed GF foods  that some bits of the NHS use : https://www.coeliac.org.uk/document-library/128-prescribable-products-list/

Some GP surgery are really obstructive about changing what you have on prescription, but luckily mine wasn't, so I got to try a few. Also I had a theory that Italian products were going to be more likely to be convincing when it came to pasta and gnocci

so, my favourites are:

NB: in the UK prescriptions come once a month, you have to freeze most of it

white bread:

Fresh Juvela white sliced. A bit sweet Makes very nice toast, not good sandwiches. Freezes well, makes sure you squeeze the bags to separate the slices before freezing

they do a long-life ambient temperature version too, good toast, awful for butties

Fresh Juvela white rolls. A bit like muffins/barmcakes. Great for butties, fresh or defrosted, Toast really well

pasta:

Bi Alimenta - I get the spirals

Gnocci

most stuff in the shops contains wheat

this doesn't:

Bi Alimenta Gnocci di potate

Barkat Matzo crackers

non-prescription: 

Barkat pretzels

DS rich tea biscuits

Mesa sunrise cereal

 

bingefeller

Have any of you guys who have been diagnosed with coeliac been for a DEXA scan to check for osteoporosis?   I actually work as a secretary for a Gastroenterologist and he sends all newly diagnosed coeliac patients for a DEXA to see if they have any bone density issues.  

ToneControl

Whereas whereas ... I'm strictly non-gluten to the extent that we don't even have gluten foodstuffs or ingredients in the house and only eat out in places that we absolutely trust.  I ate 2 slices of bread that should have been GF but wasn't as part of a meal out in a trusted place (mistakes happen) and within 2 hours I was throwing it all back up again.

sure, there's no guarantee that abstinence will make an accidental lapse OK

From my experience lapses have not been as awful since I cut out the trace things and got the hang of the diet

TTony

bingefeller said:

Have any of you guys who have been diagnosed with coeliac been for a DEXA scan to check for osteoporosis?   I actually work as a secretary for a Gastroenterologist and he sends all newly diagnosed coeliac patients for a DEXA to see if they have any bone density issues.  

Yup - been scanned - found some deterioration but not to the extent that I'm worrying.  Just taking the calcium tabs.

ToneControl

bingefeller said:

Have any of you guys who have been diagnosed with coeliac been for a DEXA scan to check for osteoporosis?   I actually work as a secretary for a Gastroenterologist and he sends all newly diagnosed coeliac patients for a DEXA to see if they have any bone density issues.  

yes, was all fine, not sure if it was called DEXA though

Hootsmon

stickyfiddle said:

mike_l said:

Try a low fibre, low fat diet for a few weeks.

Seriously, having a low fibre low fat diet has helped my Crohn's a lot.

Basically Monday to Friday I have cereal for breakfast, chicken and rice for lunch, and soup in the evening. No bread etc. I have a yoghurt and some fruit (pineapple and peach) as snacks.

Weekends, I have mash and meat (pork, gammon etc) for a main meal, and allow myself bread (white as I can't eat brown without feeling shite). I allow chocolate on weekends too, but only 1 bar.

Also I've cut down on sugar (not even in tea now) which has also helped.

 

Oh and beer is one of the few things which gives some respite when I'm having a flare, not a skin full, just one or two.

I've been through that sort of thing in what shall be henceforth known as my denial phase (aka "2014").

I just can't eat bread - anything more than one slice of really high quality fresh stuff gives me bloating, wind that would clear a room, then poo that only @Holnrew would enjoy talking about... And every time I've had beer and bread in the same evening for the last year I've been projectile vomming 6 hours later (4 times. Not something you forget )

There's a small chance it's something else, but I tick the boxes about 60% of this list. My grandad had it, so I have much higher odds than normal apparently. Er, yay?

http://glutendude.com/wp-content/uploads/2013/04/celiac-disease-symptoms.jpg

that nurse is obviously suffering from Macrocephaly

Hootsmon

Sambostar said:

More likely just gluten intolerant, built up an intolerance and allergy to a host of common things over the years, which happens and don't get enough exercise. Real Coeliac is bad news.

If you are WASP and of a certain age, you more than likely have major allergies and intolerances to a host of things like wheat, yeast and gluten.

Look out for hayfever type symptoms too.

From 27 onwards I got the most horrendous hangovers.  Always suffered worse than others for some reason prior to that.  Although I always drank about five times what anyone else was drinking.  Now if I so much as have a sip or real ale or wine, I get a blocked and runny nose, incredibly itchy skin, black patches under my eyes and a headache you would not believe that lasts for four days and sometimes the shits and vomiting, yep from one sip.  I thought it was wheat or yeast or additives, but I think it's just alcohol intolerance.

Still doesn't stop me drinking though and I get pneumothorax from time to time, day to day to some degree, to the point that sometimes I can't even breathe in, but it always hurts. Doesn't stop me smoking twenty a day.

Oh and my knee locks up, my joints are aching and my back is fooked, still nothing that a bit of through the pain threshold manual labour can't cure.  Actually heavy labour is better than things like hedgecutting.

And I get Raynaud's and the most horrendous chilblains you can imagine where my right whitefinger hand swells up to two and a half times it's normal size.  Still it only hurts when I am indoors over the weekend thinking about it.

And my left ball still aches everyday.

But these symptoms are nothing compared to a Coeliac.

I think feeling bloated and foggy minded from wheat and too much bread is normal.  I avoid it to be honest.

Get one of those home allergy tests and sent it off, you are paying for the lab to analyse the results, not the test.

And get some regular cardio vascular exercise.

You probably haven't got Coeliac, although you probably do have intolerances if you are an average WASP.

If you are Catholic you will be OK though.  Praise the lord.

A fuckin' Men