Coeliac?

stickyfiddle

Cards on table time, I feel like shit. Basically all the time, and have done for years. I'm good at manning up and putting on the "meeting a client face" or the "going to the supermarket face" but I'm 99% sure I'm coeliac and it's doing my head in.

I have a feeling I've seen a couple of people here mention they have it (possibly @TTony ?) and hoped for some advice and encouragement! I'm hoping to get an appointment for initial tests this week.

Someone say something nice and tell me it'll be ok? I don't like beer that much anyway. But chinese food... :-( :-s

mike_l

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.

stickyfiddle

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

TTony

I was diagnosed with it about 3-4 years ago.

The GP can run some tests to confirm that you don't have it, but you need an -oscopy to definitively confirm that you do have it.  

The -oscopy was a camera & scaping blade down my throat, into the stomach, and quick scraping of a bit of the lining for analysis.  Under BUPA, so it was done with a decent relaxant rather than the back-of-the-throat spray that the NHS use.

The full-on disease (which is an auto-immune response) is often mistaken for various wheat/gluten intolerances or allergies.  You need the -oscopy to be definitive.  

You can narrow it down yourself - just avoid wheat and/or gluten for a week or so, and see if you feel any better.  You should also notice that your "movements" change consistency.

With the full-on disease, your auto-immune system attacks the lining of your stomach (villi) and destroys it.  In the short-term, that restricts your ability to absorb nutrients from anything you eat, hence tiredness, lack of energy, etc.  The villi grow back, but each time they do, it increases the long-term likelihood of stomach cancer (following the diagnosis, I had to have a full barium-meal scan to look for any signs).  The disease also affects the way your body absorbs and retains calcium.  I also had to have bone density scans to assess any loss due to the disease.

What kicks it all off is unknown (at least by the medical practitioners that I spoke to).  I slowly developed an increasingly adverse response to wheat/gluten over many years, but think that was more intolerance (that grew more pronounced through time) than the disease.

Since diagnosis, MrsTT is ultra-careful with my diet and we only eat out in places that understand it.  One such made a mistake a couple of months ago and gave me normal bread rather than the usual GF stuff.  I thought at the time that it tasted nicer, but the GF options are getting steadily better, so didn't think too much of it.  2 small slices of bread.  Within an hour of getting home I was throwing it all back up and felt pretty rough for 24-48 hours afterwards.  So, my reaction is a lot lot stronger than it ever was before.

bluechargeboy

I am one of those annoying people who avoids gluten even though I don't have coeliac disease. It's a pain in the arse at first, but you just do different stuff, e.g. spag bol with rice instead of spag.

It is much easier if you can cook and don't eat processed food, which of course will make you feel better anyway. Wheat flour is in a huge and ridiculous array of foods, so you are forced into cooking or eating weird fally-apart pretend bread.

My eating is based on Primal Blueprint and it works well for me. Of course I can eat gluten-based shit if I feel the need, without serious repercussions. Most of the time I don't want to.

mike_l

Looking through the list I can count 44 symptoms I get (even occasionally). A friend who as IBS get a bunch of those symptoms too....

It might be any number of illnesses, I'd see a doctor and eliminate the doubt.

 

Also, it may be worth speaking to a dietician about an elimination diet to find what you can and cannot eat safely.

TTony

stickyfiddle said:

Someone say something nice and tell me it'll be ok? I don't like beer that much anyway. But chinese food... :-( :-s

GF beer is mostly horrible, but I have found some very decent ciders.

stickyfiddle

Thanks, TT. 

That tallies with my experience. A few years ago beer or cheap shitty bread would make me bloat a bit but anything home-cooked from flour was fine. These days it's pretty horrible and I get the most horrendous "foggy head" which makes work incredibly difficult. If I muster the will to go without for 3 days or more I start to feel way better. 

Thankfully medical is all private out here, so they're generally happy to do whatever tests you ask for and should be fine to be knocked out while they do it. Not fun, as I like eating out, but at least I'm a good cook so should be able to sort myself out at home as soon as I have enough energy again to actually do anything after work. 

stickyfiddle

TTony said:

stickyfiddle said:

Someone say something nice and tell me it'll be ok? I don't like beer that much anyway. But chinese food... :-( :-s

GF beer is mostly horrible, but I have found some very decent ciders.

That's good. I've always been more a fan of cider and wine than beer anyway. I'll cope on that side. Just need to get myself a good recipe for fruitcake.

TTony

bluechargeboy said:

e.g. spag bol with rice instead of spag.

You can get GF spag, and many varieties of pasta.

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.

stickyfiddle

mike_l said:

Looking through the list I can count 44 symptoms I get (even occasionally). A friend who as IBS get a bunch of those symptoms too....

It might be any number of illnesses, I'd see a doctor and eliminate the doubt.

Also, it may be worth speaking to a dietician about an elimination diet to find what you can and cannot eat safely.

FWIW I'm on 52 or so, but agree that doesn't confirm anything except that I need to get sorted. Will give doctor a list of symptoms, suggest testing for coeliac and thyroid (family history there too) and anything else they fancy..!

Sambostar

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.

stickyfiddle

WTF is WASP?

http://www.anticsonline.co.uk/l.aspx?k=2027873

http://thumbs3.picclick.com/d/l400/pict/150810630474_/Stingray-WASP-Patch-NEW-Gerry-Anderson-Thunderbirds.jpg

??

Sambostar

We Are Sexual Perverts.

ToneControl

TTony said:

I was diagnosed with it about 3-4 years ago.

The GP can run some tests to confirm that you don't have it, but you need an -oscopy to definitively confirm that you do have it.  

The -oscopy was a camera & scaping blade down my throat, into the stomach, and quick scraping of a bit of the lining for analysis.  Under BUPA, so it was done with a decent relaxant rather than the back-of-the-throat spray that the NHS use.

The full-on disease (which is an auto-immune response) is often mistaken for various wheat/gluten intolerances or allergies.  You need the -oscopy to be definitive.  

You can narrow it down yourself - just avoid wheat and/or gluten for a week or so, and see if you feel any better.  You should also notice that your "movements" change consistency.

With the full-on disease, your auto-immune system attacks the lining of your stomach (villi) and destroys it.  In the short-term, that restricts your ability to absorb nutrients from anything you eat, hence tiredness, lack of energy, etc.  The villi grow back, but each time they do, it increases the long-term likelihood of stomach cancer (following the diagnosis, I had to have a full barium-meal scan to look for any signs).  The disease also affects the way your body absorbs and retains calcium.  I also had to have bone density scans to assess any loss due to the disease.

What kicks it all off is unknown (at least by the medical practitioners that I spoke to).  I slowly developed an increasingly adverse response to wheat/gluten over many years, but think that was more intolerance (that grew more pronounced through time) than the disease.

Since diagnosis, MrsTT is ultra-careful with my diet and we only eat out in places that understand it.  One such made a mistake a couple of months ago and gave me normal bread rather than the usual GF stuff.  I thought at the time that it tasted nicer, but the GF options are getting steadily better, so didn't think too much of it.  2 small slices of bread.  Within an hour of getting home I was throwing it all back up and felt pretty rough for 24-48 hours afterwards.  So, my reaction is a lot lot stronger than it ever was before.

I too was diagnosed 4 years ago, after gradually getting worse over 20 years

btw it's not villi in your stomach, it's your intestines. 

Kids with it used to just die. First kids to survive were Dutch kids in the war when the Germans took all their wheat away for their army

Adult onset takes a long time, and is not fatal without treatment, just nasty, you just just end up with more and more "food poisoned" style days until you end up housebound. Average diagnosis time from symptoms onset is 13 years in the UK. The NHS are pretty poor at picking it up, which is pitiful for something easy to diagnose that 1% of us have, I had to go private after being sent away, and told my problem was that I was taking too many NSAIDs, after telling them I take just 4 tablets a year.

On BUPA, was diagnosed within a month, stopped eating gluten, etc, and was fine after 4 days.

50% of coeliacs are lactose-intolerant. This usually goes once you stop eating gluten and recover

As you note, the tolerance you have developed goes once you stop eating gluten. Subsequently, if you do get contaminated by stupid restaurants (happened to me too), or bloody rice noodles that are made from rice flour but somehow make you ill, or turkey from waitrose that seems to have been injected with something, then you get a lot more ill than you did before you stopped eating gluten

The EU law changed on 13th December 2014, now all food lets are compelled by law to give accurate info:https://www.food.gov.uk/science/allergy-intolerance/label/labelling-changes

I went to a small restaurant yesterday, and they had a chart ready, even though their menu is a blackboard, 

Sambostar

Histamine reactions from intolerances and allergies are basically a mild auto immune problem.  This is what I get from alcohol.

ToneControl

TTony said:

stickyfiddle said:

Someone say something nice and tell me it'll be ok? I don't like beer that much anyway. But chinese food... :-( :-s

GF beer is mostly horrible, but I have found some very decent ciders.

Best GF beer is Daura Damm

it is actually quite a good lager:

http://dauradamm.com/

btw to be pedantic, beer contains hordein not gluten, but that's too technical, so everyone just says gluten-free

You can buy gluten-free soy sauce. traditionally, Japanese soy sauce is often gluten free

I've never tried my luck asking a restaurant to cook with it though, I assume the woks would be contaminated

There is a fancy expensive GF Chinese in London, but it's Michelin-star prices

ah, now I check they have got a star now

http://hakkasan.com/locations/hakkasan-mayfair/menu/a-la-carte/

stickyfiddle

Ooh, Hakkasan? We have one of those here! YAY!!

Not sure if I can get GF soy here but will pick some up next time I'm home if not. 

Will update when I've seen a doc.

ToneControl

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

stickyfiddle

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!

Sambostar

So if Arabs are better suited to eating jam butties and Northern Europeans are better suited to eating curry, surely that reaffirms the theory that Jesus is real and that the Sea of Galilee and Bethlehem are actually originally Celtic names and places and that Celts are but a tribe of Israelites, perhaps even that the 13th branch of the illuminati is in fact real?