Celiac testing / food intolerances

Sheepdish1

Hi, I had to stop eating wheat three years ago.
Have had strong reactions such as severe itchiness, severe acne, vomiting, bloating, extreme tiredness and lack of energy after eating it. I could tell very quick if I ate it accidentally as reaction was so severe. Eg I was being served rye bread which actually had wheat and I’d need to get into bed / lie down. It peaked at it’s worst after one bottle of non alcoholic beer.

I used to get severe tonsillitis 6 times a year and was due to get them removed but haven’t had it since stopping wheat. I also had severe cystic “acne”. It drastically cleared up after any time where I didn’t eat food ( vomiting bug/fasting) and eventually I came to the conclusion it was wheat too and it drastically improved. Was due to get laser treatment etc and didn’t need it. Didn’t need to go on very strong medication after suffering with it for 15 years.

For some reason lately my acne has flared up. I cut out dairy and it cleared. Had a small amount of dairy last weekend and it has reacted so badly I’m going to doctors for third set of antibiotics. It is so severe, sore and infected but seems to be clearing since no dairy / eggs this week.

I become weak very suddenly and feel faint even though my diet is *very* healthy. I need to bring food with me everywhere, even if I’m out for just a few hours as my sugars crash.

I feel unusually tired lately and have been informed that I need veneers on all of my front teeth as they’ve been worn down so much.

It was a pharmacist who helped me see wheat was a problem. I’ve lost confidence in GP’s tbh and would like some guidance as to how to go about this as I don’t want to be sent to some ‘fad’ food intolerance test.

Can I be tested for celiac disease if I haven’t been eating wheat? I physically can’t as I’ll be too unwell but if it is celiac disease I need to know

Thank you 😊

DavyD_83

To get diagnosis you need a biopsy, and in order to do the biopsy they will want you to eat equivalent of 6 slices of bread a day for 6 weeks.
Depending on how bad your symptoms are, it may not be worth it to you just to get the box ticked.

upinsmoke

Go to your Doctor and get tested.

I went and tested for food allergies and bloods came back normal though.

If I ate a bowel of Pasta I'd be sick for days with pains in abdomen, no energy, brain fog to the point I'd be falling asleep in work and could easily sleep 12 hours. Oats is the same thing.

Dairy is not as severe for me but messes up my bowel habits

Never any problems after beer or pizza

Sheepdish1

DavyD_83 wrote: »

To get diagnosis you need a biopsy, and in order to do the biopsy they will want you to eat equivalent of 6 slices of bread a day for 6 weeks.
Depending on how bad your symptoms are, it may not be worth it to you just to get the box ticked.

I physically couldn’t do that. I would be too unwell and in bed for 6 weeks. Is there no other ways to get checked? One of my friends was saying it’s very important to get diagnosed because it can’t be untreated as it can have serious health affects.

Sheepdish1

upinsmoke wrote: »

Go to your Doctor and get tested.

I went and tested for food allergies and bloods came back normal though.

If I ate a bowel of Pasta I'd be sick for days with pains in abdomen, no energy, brain fog to the point I'd be falling asleep in work and could easily sleep 12 hours. Oats is the same thing.

Dairy is not as severe for me but messes up my bowel habits

Never any problems after beer or pizza

Yes I can’t function or even concentrate. I’ve just weighed myself and I’ve lost a stone over the last couple of months but don’t know if that’s from cutting out dairy. I just don’t feel right at all

Sheepdish1

I’ve appointment booked but would like to know some info before going in. I have lost confidence in GP’s as I find they are just giving me antibiotics which is a quick fix. For 15 years have gone to gp’s/ consultant dermatologists and a pharmacist was more help to me than any

DavyD_83

Sheepdish1 wrote: »

I physically couldn’t do that. I would be too unwell and in bed for 6 weeks. Is there no other ways to get checked? One of my friends was saying it’s very important to get diagnosed because it can’t be untreated as it can have serious health affects.

As far as I am aware biopsy is still the only method to get a clinical diagnosis.
My wife was undiagnosed and suffering for 10yrs, dismissed as IBS (by what I now think of as the worst GP in Dublin, having seen her while families histories). She is still not technically diagnosed as coeliac, but quality of life has changed so much since cutting out gluten that she wouldn't go back for testing.

My 4 Yr old is a tested and confirmed coeliac (since approx 15months), 2yr old is treated as coeliac based on symptoms and family history, but have been told if she ever wants the clinical diagnosis she will need to "challenge her system" as above before testing.
Consultant, has said not to bother unless she decides to do it herself as teenager to fully justify the fact she can't eat nice cake etc.

But again, based on her symptoms as baby, I would imagine it would be torture and she'd give up half way through.

Sheepdish1

DavyD_83 wrote: »

Sheepdish1 wrote: »

I physically couldn’t do that. I would be too unwell and in bed for 6 weeks. Is there no other ways to get checked? One of my friends was saying it’s very important to get diagnosed because it can’t be untreated as it can have serious health affects.

As far as I am aware biopsy is still the only method to get a clinical diagnosis.
My wife was undiagnosed and suffering for 10yrs, dismissed as IBS (by what I now think of as the worst GP in Dublin, having seen her while families histories). She is still not technically diagnosed as coeliac, but quality of life has changed so much since cutting out gluten that she wouldn't go back for testing.

My 4 Yr old is a tested and confirmed coeliac (since approx 15months), 2yr old is treated as coeliac based on symptoms and family history, but have been told if she ever wants the clinical diagnosis she will need to "challenge her system" as above before testing.
Consultant, has said not to bother unless she decides to do it herself as teenager to fully justify the fact she can't eat nice cake etc.

But again, based on her symptoms as baby, I would imagine it would be torture and she'd give up half way through.

My GP told me today that they will be able to tell from blood tests whether I am celiac or not. I asked him is he sure that I don’t need a biopsy to get tested and eat wheat for a few weeks and he said blood tests will confirm it.

This is why I have no confidence what so ever in GP’s anymore. I shudder to think of things that are actually serious that get missed because GP’s are giving out wrong information

thisistough

If you’ve been taking lots of antibiotics then a round of probiotics would probably be a good idea to try to rebalance your gut flora that got wiped out from the antibiotics. I think they’re recommended for every time you take antibiotics but gps don’t really seem to say anything about them.

I’ve found a good (properly qualified) dietician to be great for this kind of thing, they’re interested in stopping problems from arising from the type of food you’re eating insofar as possible rather than disregarding diet and just throwing drugs at the problem afterward like a lot of doctors do

ETA : I realise these suggestions won’t help with celiac, but if you’re reacting to other foods like dairy that were previously fine then it might be worth exploring, it certainly helped me

Sheepdish1

thisistough wrote: »

If you’ve been taking lots of antibiotics then a round of probiotics would probably be a good idea to try to rebalance your gut flora that got wiped out from the antibiotics. I think they’re recommended for every time you take antibiotics but gps don’t really seem to say anything about them.

I’ve found a good (properly qualified) dietician to be great for this kind of thing, they’re interested in stopping problems from arising from the type of food you’re eating insofar as possible rather than disregarding diet and just throwing drugs at the problem afterward like a lot of doctors do

ETA : I realise these suggestions won’t help with celiac, but if you’re reacting to other foods like dairy that were previously fine then it might be worth exploring, it certainly helped me

Yes I’ve taken the probiotic stuff and will start that today actually thank you 😊

I will book in to meet a dietitian and hopefully get some advice. It is bizarre that they just prescribe drugs, even the information I got today seems completely incorrect plus I’m down €60 for it! It really is bizarre !

0lddog

I think that you will find that for the blood test to have a hope of working ( its not a great test ) it is necessary to consume significant gluten every day in the weeks leading up to the test.

Other reading :

https://www.coeliac.ie/wp-content/uploads/2015/05/coeliac-disease-recognition-assessment-and-management-1837325178565.pdf

https://www.coeliac.ie/getting-diagnosed/

Sheepdish1

0lddog wrote: »

I think that you will find that for the blood test to have a hope of working ( its not a great test ) it is necessary to consume significant gluten every day in the weeks leading up to the test.

Other reading :

https://www.coeliac.ie/wp-content/uploads/2015/05/coeliac-disease-recognition-assessment-and-management-1837325178565.pdf

https://www.coeliac.ie/getting-diagnosed/

Thank you for this. I even said this to him and he told me that I didn’t need to increase my uptake of wheat *facepalm*

It is crazy that I’m being given more accurate advice from my own research than a doctor. So when I do the blood test it will most likely be innacurate.

He also told me that there is nowhere in the HSE that tests for food allergies that I will have to pay to go private. I don’t know if this is right or wrong information! Sigh

DavyD_83

Sheepdish1 wrote: »

Thank you for this. I even said this to him and he told me that I didn’t need to increase my uptake of wheat *facepalm*

It is crazy that I’m being given more accurate advice from my own research than a doctor. So when I do the blood test it will most likely be innacurate.

He also told me that there is nowhere in the HSE that tests for food allergies that I will have to pay to go private. I don’t know if this is right or wrong information! Sigh

You are free to move GP, and based on everything you have said I would seriously consider it. Its very little hassle and could save you a lot of this type of stress and frustration in the long run.
That, or spend what you would on 2 appointments with this Dr and talk to a qualified consultant or dietician who specialises in the area.

https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/blood-tests/

Simple blood test, I had it as I have Inflammatory Bowel Disease and they wanted to eliminate possibility of Coeliac Disease. Boots sometimes do home blood test kits too.

DavyD_83

Ruling something out, and confirming diagbosis can require completely different levels of testing.
To be fair, I haven't read any of the links provided, just providing my own experience.
I'm also very aware that these things change constantly, so my knowledge may well be or of date already.

Tigerandahalf

You really should be going to see a private doctor who deals with immunology. They often test kids for allergies like peanut, egg and nuts and give a formal diagnosis.

I got a blood test done in the past to test for being coeliac and it came back negative thankfully. I had nowhere near the symptoms that you had though. I am pretty shocked that you haven't had better treatment up to now, given the bad symptoms you have.

Many people out there will have allergies or intolerances to something and could go through their whole life without looking into it. GPs don't tend to have great knowledge on this area. Afterall they are a general practicioner. You need to see someone who is an expert in the area.

Best of luck.

Sheepdish1

DavyD_83 wrote: »

Sheepdish1 wrote: »

Thank you for this. I even said this to him and he told me that I didn’t need to increase my uptake of wheat *facepalm*

It is crazy that I’m being given more accurate advice from my own research than a doctor. So when I do the blood test it will most likely be innacurate.

He also told me that there is nowhere in the HSE that tests for food allergies that I will have to pay to go private. I don’t know if this is right or wrong information! Sigh

You are free to move GP, and based on everything you have said I would seriously consider it. Its very little hassle and could save you a lot of this type of stress and frustration in the long run.
That, or spend what you would on 2 appointments with this Dr and talk to a qualified consultant or dietician who specialises in the area.

Hi thank you for advice but I have moved GP as I hoped to avoid this sort of thing happening. However I am still getting incorrect information about the basic testing for celiac disease so I’m sceptical of the GP’s advice. I would have thoufght something so basic would be within the scope of a GP. That is great suggestion but how do I tell him what consultant I neee to go to when I don’t know what the problem is. It’s tricky.

Sheepdish1

DavyD_83 wrote: »

Sheepdish1 wrote: »

Thank you for this. I even said this to him and he told me that I didn’t need to increase my uptake of wheat *facepalm*

It is crazy that I’m being given more accurate advice from my own research than a doctor. So when I do the blood test it will most likely be innacurate.

He also told me that there is nowhere in the HSE that tests for food allergies that I will have to pay to go private. I don’t know if this is right or wrong information! Sigh

You are free to move GP, and based on everything you have said I would seriously consider it. Its very little hassle and could save you a lot of this type of stress and frustration in the long run.
That, or spend what you would on 2 appointments with this Dr and talk to a qualified consultant or dietician who specialises in the area.

Hi thank you for advice but I have moved GP as I hoped to avoid this sort of thing happening. However I am still getting incorrect information about the basic testing for celiac disease so I’m sceptical of the GP’s advice. I would have thought something so basic would be within the scope of a GP so I could be refferred on to correct consultant or specialist. That is great suggestion but how do I tell him what consultant I need to go to when I don’t know what the problem is. It’s tricky.