Sorry If This Posted Before..couldn't Find It -

[Sara-UK]

Hi

I hope you don’t mind me posting here – I’m not a celiac, but this site was recommended to me as a gluten-free haven!

About a year ago I noticed I was bloated all the time after eating, especially pasta, so looked into food intolerances etc, and noticed I had some other possible symptoms – migraines (driving me mad!), depression, diahrroea, painful abdomen, so I bought the York Test kit (I’m in the UK by the way). After moving house etc I finally came across the test again a month or so ago, and thought seen as I’ve bought it I might as well do it, so sent it off and got my results a couple of weeks ago.

We seem to have the results different here to what you have there..my results came in 3 lists –green ones werefine,, yellow ones I should rotate as I had a slight reaction to, and red ones I should avoid totally – but, there seem to be quite a few! Esp to cut out all at once!

The red ones were scored on a scale of 1-4, with 4 being the higest it could be.

So,

Cows milk came up as a 4, Egg white, wheat and gliadin were 2’s, egg yolk, mollusc mix, carrot, kiwi, garlic, ginger, sesame seed, coffee and yeast were all 1’s. So according to them I should cut all of those out totally. Rotation foods which would be a problem maily included tuna, white fish, coriander, cumin.

I had a few minutes with a lady here (I work as a scientist at Nottingham Uni) who is a trained nutritionist, and she said to start off by cutting out the 4’s and 2’s, milk, wheat, gluten and eggs – so that’s what I’ve been doing for the last 2 weeks.

She said it sounded like I had a leaky gut? Also, 2 years ago I had spontaneous peritionitis and nearly died and they never found the cause – could that have been some bug getting through my leaky gut?

Anyway, so there are a few questions! First off, is there anything important I should ask the people where I did the test? I’ve got a 30 mins phone consultation on Friday and want to make sure I get the most out of it.

If I cut these (and the rest of them) out totally, am I likely to feel better? I don’t think I generally feel bad in the first place, so it’s hard to see how I can be different –but then I wonder sometimes if everyone feels like I do, with bloating etc and it’s normaly, or its just me and that cos it’s all the time I think it’s normal

How long should it take for any differences?

How on earth do you lot cope! Have bought many things which should be ok, pasta, bread etc, but they all taste weird and funny. Just ordered a breadmaker though, so I’ll have a go at my own bread soon.

And this is an irrelevant question – but how does your medical system work over there? I keep reading things about people having neurologists, and allergists and all sorts of different doctors. Do you have one normal gp doctor who then refers you to places?

I’ve been to my doctor several times when I’ve had quite bad diahrroea for 4 or 5 weeks, and they never said anything really, just to come back if it doesn’t go, and it always has cleared up (that’s why I didn’t go to the docs when I had peritionitis, until I couldn’t walk and was nearly unconscious!).

Sorry that’s so long.

Today and yesterday I’ve been feeling really fed up with all this, and it’s only been 2 weeks. All I want is a big fat piece of garlic bread 

Sara

[taz sharratt]

Hi

I hope you don’t mind me posting here – I’m not a celiac, but this site was recommended to me as a gluten-free haven!

About a year ago I noticed I was bloated all the time after eating, especially pasta, so looked into food intolerances etc, and noticed I had some other possible symptoms – migraines (driving me mad!), depression, diahrroea, painful abdomen, so I bought the York Test kit (I’m in the UK by the way). After moving house etc I finally came across the test again a month or so ago, and thought seen as I’ve bought it I might as well do it, so sent it off and got my results a couple of weeks ago.

We seem to have the results different here to what you have there..my results came in 3 lists –green ones werefine,, yellow ones I should rotate as I had a slight reaction to, and red ones I should avoid totally – but, there seem to be quite a few! Esp to cut out all at once!

The red ones were scored on a scale of 1-4, with 4 being the higest it could be.

So,

Cows milk came up as a 4, Egg white, wheat and gliadin were 2’s, egg yolk, mollusc mix, carrot, kiwi, garlic, ginger, sesame seed, coffee and yeast were all 1’s. So according to them I should cut all of those out totally. Rotation foods which would be a problem maily included tuna, white fish, coriander, cumin.

I had a few minutes with a lady here (I work as a scientist at Nottingham Uni) who is a trained nutritionist, and she said to start off by cutting out the 4’s and 2’s, milk, wheat, gluten and eggs – so that’s what I’ve been doing for the last 2 weeks.

She said it sounded like I had a leaky gut? Also, 2 years ago I had spontaneous peritionitis and nearly died and they never found the cause – could that have been some bug getting through my leaky gut?

Anyway, so there are a few questions! First off, is there anything important I should ask the people where I did the test? I’ve got a 30 mins phone consultation on Friday and want to make sure I get the most out of it.

If I cut these (and the rest of them) out totally, am I likely to feel better? I don’t think I generally feel bad in the first place, so it’s hard to see how I can be different –but then I wonder sometimes if everyone feels like I do, with bloating etc and it’s normaly, or its just me and that cos it’s all the time I think it’s normal

How long should it take for any differences?

How on earth do you lot cope! Have bought many things which should be ok, pasta, bread etc, but they all taste weird and funny. Just ordered a breadmaker though, so I’ll have a go at my own bread soon.

And this is an irrelevant question – but how does your medical system work over there? I keep reading things about people having neurologists, and allergists and all sorts of different doctors. Do you have one normal gp doctor who then refers you to places?

I’ve been to my doctor several times when I’ve had quite bad diahrroea for 4 or 5 weeks, and they never said anything really, just to come back if it doesn’t go, and it always has cleared up (that’s why I didn’t go to the docs when I had peritionitis, until I couldn’t walk and was nearly unconscious!).

Sorry that’s so long.

Today and yesterday I’ve been feeling really fed up with all this, and it’s only been 2 weeks. All I want is a big fat piece of garlic bread 

Sara

hi sara, im from the uk too, sorry dont know about the york test, i had blood test at gp. its very normal for your gp to diagnose you with something else, for 10 years i had all the symptoms of celiac but my doc siad i had everythng from IBS to a sexually transmitted desaese the docs over here get it wrong just as much as the american docs do. my doc has sent m to a dietician but ive learnd more her than i will ever learn from her have you bee in contact with celiac uk yet? they are very good and will ring you back with a reianed deitician who is a specalist in celiac. www.coeliac.org.uk or tel no 08704448804 or 01494437278. hope this helps you. sorry i couldnt give you any other info but you will find someone here that knows what you are looking for. good luck

[Sara-UK]

thanks - I'll see what the woman on Friday says, see if she is any use.

Feel a bit of a fraud really - it says I have these 'intolerances' but it's not like I feel desperately ill all the time. Just hoping for a general improvement all round, and for things I don't know I have to disappear!

Sara

[ravenwoodglass]

thanks - I'll see what the woman on Friday says, see if she is any use.

Feel a bit of a fraud really - it says I have these 'intolerances' but it's not like I feel desperately ill all the time. Just hoping for a general improvement all round, and for things I don't know I have to disappear!

Sara

Hi Sara and welcome. You may not be sick all the time......yet. Things will improve and you have come to a great place for support. Please bear in mind the addictive nature of gluten and that you will experience some degree of withdrawl from it which most likely will include strong cravings. This will pass. If you have KinniKnick (sp?) bread available there the italian tapioca is great for garlic bread toast.

[Sara-UK]

hiya,

I've not heard of that bread, but I'll look out for it next time I'm in the shop. Ordered a breadmaker with some gluten free setting or something the other day, so I'll give that a blast when I get it.

Think I had some cravings the other day..really really wanted cake or bread, and was doing my head in that I couldn't have any, or any that I found I liked, and was in a totally foul mood all day!

Sara

[gfp]

I don’t think I generally feel bad in the first place, so it’s hard to see how I can be different –but then I wonder sometimes if everyone feels like I do, with bloating etc and it’s normaly, or its just me and that cos it’s all the time I think it’s normal

That is how it usually manifests.

Your comment is almost classic, only a minority go from 100% healthy to full blown overnight and even in these cases we usually look back and see with 20/20 hindsight.

Anyway, so there are a few questions! First off, is there anything important I should ask the people where I did the test?

Yes these seem to be IgE tests for allergy not IgA or IgG ....

(I'm presuming I don't nee to explain the difference)

Your symptoms are pretty classic coelaic, which is itself rather rare to have so many!

On one level it doesn't matter if you eliminate gluten ... but then you need to research the right things.

I know I keep hammering this but you sound just like me when I was pre-diagnosis..... I was convinced my symptoms were too mild ... no family history etc. etc.

Well the family history reversed itself... and when I look back the symptoms are not mild and NO ... most people don't have those symptoms. Because we cover up some of the most embarassing things we presume other's must be and we are normal, its not true.

The only person who may have brought this up from washing my smalls as a child was my mom... and she thought it was normal too.

After my mum was diagnosed she still resisted and said she never had symptoms etc. etc. and I brought up a few embarassing episodes. Most people I know are more forthcoming on sexual habits than bowel ones!

A while ago I "shared" a little story here about my emergency kit. It includes a 1" swiss army knife which can be used in the worst case scenario to cut away underwear .. then quite a few people piped in about their emergency kits. I have been in a pharmacy getting drugs and spotted another potential coelaic and one day in a bar some guy approached me seeing my antacids, acid inhibitors and immodium... its actually not the nicest bar (equal numbers seem to leave via windows as the doors) and I was only there because a friend was playing live but it turned out he knew a barman friend of mine and knowing I was a friend of the musician tracked me down.

He took what I said and his mother got tested back in Ireland and came out +ve... and this was just from the medication I carried after a glutening incident. Over 50% of coelaics get GERD but its absense it not diagnostic.

[Sara-UK]

Hi GFP - thanks for that, and your other post in the other topic.

I did read a few of his papers, including some Lancet ones last night - I'm afraid I'm not up on all the neurology terms, so wasn't sure what symptoms he was actually referring to, but it does seem to have proven link to neorological things.

It's all so weird! I guess only because not many people have done research into this yet, and the other effects it can have.

The test I had was for IgG antibodies, not IgE, so whatever it is, it's not a true 'classic' allergy.

I spoke to the woman at the test place this morning (I had made the appointment earlier in the week), and she said it sounded like I have a leaky gut, as I have a higher than average number of foods coming up positive. She said it's unlikely to be anything like celiacs, as she said they have severe diahorrea pretty much all the time, and eating even a tiny bit of wheat can bring it on - I don't have an upset stomach all the time, just off and on for no reason (though this week I have def been a lot 'firmer' than I have before! almost bunged up!)

So, she said I need to carry on cutting out the wheat, gluten, milk, eggs, and also to cut out yeast (this came up positive too), as I could have an overgrowth of yeast in my gut. Get a really good probiotic, and take L-glutamine. Think I feel better for talking to her, as she said it's not normal to feel like I do sometimes. I have to stay off my 4's (milk) for a year, and my 2's for 6 months, or until symptoms go, then introduce stuff slowly. So we'll see. I'm going to feel a fool though, when I'm out, having to say oh I can't have that blah blah blah.

And I've just ordered a breadmaker, and now I can't have yeast! Found some random bread recipes that are ok, but they have weird things in, like lemonade!

I'll spend the weekend experimenting.

So is what I have something that could turn celiac eventually? Or is celiac a proper genetic disease, that if I had I'd really know about it?

She said to only go to a GP if I have an open minded one - otherwise they may make me feel like I'm making it up and make me feel worse. I don't reallyhave a prpoer Dr, always seem to see different people each time!

Anyway, should be writing a talk at the moment! my boss has been away for 2 weeks, back on monday - won't be impressed if I have nothing to show him!

Have a good weekend incase I don't get back on.

Sara

(thanks for all your help and info1)