Anyone suffering from Ceoliac Desease?

Drummond1

Hey guys,

I was diagnosed with ceoliac desease mid summer and was wondering if anyone else on here is Ceoliac or knows riders who are?!?

If you've never heard of the condition, basicaly its an autoimmune desease where by the immune system actively attacks the digestive system when Gluten is consumed so the body cant absorb neutrients properly producing symptoms including fatigue, malnourishment, anemia etc..... theres no cure but the solution is never to eat gluten again.....

It would be great to get a list of gluten free energy and recovery products together and get a thread of peoples stories and experiences with the disease........

Look forward to your responses,
Ian
PS; Im actauly writting a book on my experience with Ceoliacs, I'll post my story soon as its still in the early stages

supersonic

There was a thread on this a while back - I'll see if I can find it.

breezer

My dad has this so theres a fair chance I may in later life. Sadly it took years for them to diagnose that was his problem and by that point he developed osterperosis (spelling!) and lost so much weight. Since eating correct stuff for him he has sorted his weight out and I believe his bones are improving a bit as well.

My biggest concern about getting it is not being able to drink normal beer

Surf-Matt

A friend of a friend lives in Bristol and is an Ironman competitor - he is a coeliac.
He has had the odd article in various mags - he's an osteopath too.

miss notax

Hello

An ex of mine suffered from coeliacs disease and over the years I became a bit of an expert on it! Get used to reading labels VERY thoroughly...

As long as you amend your diet there's no reason why this should affect your riding. Lots of the supermarkets label their food as 'suitable for coeliacs' or 'gluten free' so it's getting a lot easier to manage I think. Easy for me to say though :?

Good luck!

Kitty

Bit late in replying, but I can't have wheat/gluten, mines not classed as coeliacs but it's similar, can't even eat things with traces or made in a factory using gluten. Makes it harder that I can't have dairy either.

I've been on my special diet since Feb, having gone through hundreds of blood tests, a ct scan, endoscopy, ultrasound, fully body check up really lol! If you have any questions I might be able to help or point you in the right direction.

Main thing is to check everything, I thought I'd cut it out complete but was still ill, until I realised some squash drinks that I was having had wheat in, doh!

LingfieldXC

i know a couple of coeliacs, i heard somewhere that there are only meant to be like 300 in the country which i struggle to beleive.

Kitty

It's on average 1 in 100 for the UK, only 1 in 8 are diagnosed for coeliacs.

Wheat intolerance is a lot higher, but again often not diagnosed.

Northwind

Tesco's has some good options... They do a blueberry breakfast bar in their free-from range which I use as my equivalent of the usual trail bars, works a charm. Just like a regular fruity bar except that instead of wheat and oats it uses, um, sawdust or monkey spunk or something similiar. I hate nuts but they have various fruit and nut bars that would be suitable too. Are you allowed oats? I'm to be tested for a reaction to them next year, at the moment they're off the menu.

Energy gels are pretty easy, there are a couple that use wheat as a bulking agent/stabiliser though. I believe all the dextrosol and lucozade tablets are OK. Lots of the powdered drinks, recovery potions and the like are off limits though, for the same reason, wheat used to make the drinks thicker.

Oh, on a total aside, if you've not tried the glutafin select bread stuff, you should, it's so much better than the usual dish-sponge gluten free bread. And the cake mix is fantastic, you can't really tell it's not proper wheat. Mmm, cakes. This stuff has been a lifesaver for me, it seems like most coeliacs just delude themselves into thinking the prescription bread is actually edible, when it's clearly cardboard. But the bread mixes make actual, genuine tasty bread. And all on prescription.

Kitty

I eat english muffins instead of loafs of bread generally, doesn't fall apart when having a butty like the bread does.

Northwind

Ah, that used to drive me mental "Mmm, a bag of bread dust with some cheese lumps in it, tasty..." Definately sawdust-based.

My home-baked stuff is pretty damn good I think, and it travels well too, though it goes stale fast... but the dough's too thin to make rolls with so far, I need to work on that. Every attempt so far has left me with what I call flatbread- it starts out looking like a potential roll, but by the time it's baked it's about 8 inches across and half an inch thick. :oops:

Fidius

my wife has had it for 3 years shes is very clued up on it ......i know it can be a pain though as the food you need to eat costs alot more and is somtimes hard to find good luck anyway with your condition

KnightofCydonia

I'm currently off wheat, gluten, yeast/fermented products, sugar as far as possible, aspartame. It's a nightmare reading labels. Some of the 'free from' stuff is very nice, others is god awful.

The Northern Monkey

Random, i've just written an essay on coeliacs disease

Northwind

Just thought I'd add another big-up for Glutafin's new Select Multipurpose White Mix, it's a general mix rather than a bread mix but still makes the best gluten free white bread there is out there. I've fooled people with it into thinking it was regular flour bread, doesn't get better than that. Stuff like this really makes things easier.

KnightofCydonia

Northwind wrote:

Just thought I'd add another big-up for Glutafin's new Select Multipurpose White Mix, it's a general mix rather than a bread mix but still makes the best gluten free white bread there is out there. I've fooled people with it into thinking it was regular flour bread, doesn't get better than that. Stuff like this really makes things easier.

where'd you buy it from? I've seen it online at huge prices, am I looking in the wrong places?

Northwind

I get it on prescription... But maybe that's only for coeliacs? I'd have thought the same would apply to anyone else with a similiar diet requirement, but maybe not, hmm.

Ah, but hang on, it's not wheat free, it's just gluten free but still contains wheat (I think that's the reason it's actually nice). So it might not be any use to you. Ah, sorry if that's the case, I hadn't even thought about that side of it

KnightofCydonia

you're ok. I should be able in a few weeks time to reintroduce wheat & gluten but since I'm always gonna be at least a 'bit' sensitive to it, so having good alternatives never hurts.