Is it worth me getting tested?

[sunny-monday]

Hello 😁

I have had ongoing heath issues since childhood some of my symptoms include bad breath, sick often after eating bread and cereal (stopped happening once an adult), diarrhoea, extreme thirst, fatigue and inability to gain weight. I have been sent for many blood tests and poo samples over the years and have been frustrated when I receive no clear answers for my issues (found out I was anaemic though). I gave up on trying to figure out what was going on as the NHS were passing me from pillar to post, it felt like I was getting no where and it really took a toll on my mental health. 

I randomly saw a post on social media about Celiac disease and was shocked to my core when I researched it as it resonated with me so deeply! I quickly cut out gluten from my diet and have been gluten free since April 2023. I felt better within a few days, less tired and better digestive health over all. 
 

My question is that as I have not been officially diagnosed if I get tested would it show up negative simply because I’ve not eaten gluten in so long? I’ve seen many sites saying you need to eat gluten for 6 weeks prior to tests and I honestly don’t think it could do it for even a day now! I would like to get tested just for the peace of mind that it is in fact celiac that I’ve been suffering from. 

Has anyone had any experience of a positive blood test result after going gluten free?

 

[cristiana]

Hello Sunny

It is interesting to hear you are feeling the benefits of dropping gluten from your diet.  This could point to your having non-coeliac gluten sensitivity, or coeliac disease itself.  

I am not sure where you are posting from, but in some countries there are real benefits in obtaining a formal diagnosis. 

For example, in the UK, my country, a formal coeliac diagnosis comes with several benefits: an annual follow-up from a gastroenterologist, with blood tests to check for compliance and any complications;  a nutritionist referral, a DEXA bone scan every few years to check for osteopenia/osteoporosis, something that coeliacs are prone to.  I believe in Italy the government pays a benefit to cover the extra cost of gluten free bread and pasta.  In the the UK gluten free alternatives are often much more expensive, and with a proper diagnosis, bread is available on prescription in some areas.

So food for thought.

Cristiana

[sunny-monday]

9 minutes ago, cristiana said:

Hello Sunny

It is interesting to hear you are feeling the benefits of dropping gluten from your diet.  This could point to your having non-coeliac gluten sensitivity, or coeliac disease itself.  

I am not sure where you are posting from, but in some countries there are real benefits in obtaining a formal diagnosis. 

For example, in the UK, my country, a formal coeliac diagnosis comes with several benefits: an annual follow-up from a gastroenterologist, with blood tests to check for compliance and any complications;  a nutritionist referral, a DEXA bone scan every few years to check for osteopenia/osteoporosis, something that coeliacs are prone to.  I believe in Italy the government pays a benefit to cover the extra cost of gluten free bread and pasta.  In the the UK gluten free alternatives are often much more expensive, and with a proper diagnosis, bread is available on prescription in some areas.

So food for thought.

Cristiana

Hi Christina, 

Thanks so much for your response! I’m based in the UK and have a slight aversion to the NHS, I developed a peanut allergy a few years ago and am still waiting for a follow up and epipen 🙄😂

 I will defiantly consider getting tested since there are a lot of benefits I didn’t know about so thank you for that information! I’m just conscious that there will be no gluten in my system during the test. Are you a celiac and were you diagnosed via blood test? 
 

Thanks x
 

 

[trents]

1 hour ago, sunny-monday said:

Hi Christina, 

Thanks so much for your response! I’m based in the UK and have a slight aversion to the NHS, I developed a peanut allergy a few years ago and am still waiting for a follow up and epipen 🙄😂

 I will defiantly consider getting tested since there are a lot of benefits I didn’t know about so thank you for that information! I’m just conscious that there will be no gluten in my system during the test. Are you a celiac and were you diagnosed via blood test? 
 

Thanks x
 

 

Welcome to the forum, sunny-monday!

The tests for celiac disease do not measure gluten in the system but rather the inflammation antibodies caused by the autoimmune reaction to gluten in the small bowel. As Cristiana explained, you could also have NCGS (Non Celiac Gluten Sensistivity). Celiac disease and NCGS have a lot of symptom overlap but there is no test for NCGS at this time. celiac disease must first be ruled out. Both disorders require complete abstinence from gluten and NCGS is 10x more common than celiac disease.

There is a considerable learning curve in actually eating gluten free as opposed to just eating lower gluten. Wheat/gluten is found in so many food products that you would never expect like soy sauce and canned tomato soup (most canned soups actually). And then there is the possibility of gluten in vitamins and supplements since wheat starch can be used as a filler. Studies have shown that most people who think they are eating gluten free are actually eating lower gluten, especially those who still eat out. Cross contamination ("CC") is typically the reason. This might help:

 

Edited July 20, 2023 by trents

[cristiana]

1 hour ago, sunny-monday said:

Hi Christina, 

Thanks so much for your response! I’m based in the UK and have a slight aversion to the NHS, I developed a peanut allergy a few years ago and am still waiting for a follow up and epipen 🙄😂

 I will defiantly consider getting tested since there are a lot of benefits I didn’t know about so thank you for that information! I’m just conscious that there will be no gluten in my system during the test. Are you a celiac and were you diagnosed via blood test? 
 

Thanks x
 

 

Ah... I'm sorry to hear about your experience.  Things are a bit hit and miss with the poor old NHS at the moment.  That said, my experience of the gastroenterology department in my local hospital has been excellent, sometimes better than the private sector, even since COVID, so you may be pleasantly surprised on this occasion - hope so!

Unfortunately you will need to consume 2 slices of normal, glutinous bread, or the equivalent, for about six weeks prior to your blood test in order for antibodies to show if you are reacting to the gluten. 

You will need to make an appointment with your GP to have the blood test - if your GP is well informed, they will know about the need to consume gluten for this stated period first.  Whatever you do, don't let them take a blood test without this so called six week 'gluten challenge'.

For an overview of the recommended testing route in the UK, please look at this link.  And note, if your blood tests come back negative, sometimes people still undergo endoscopies to completely rule out coeliac disease because sometimes the antibodies do not show in the blood test in a minority of coeliacs.  This is something you can discuss with your doctors should that eventuality arise.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/

[sunny-monday]

19 hours ago, cristiana said:

Ah... I'm sorry to hear about your experience.  Things are a bit hit and miss with the poor old NHS at the moment.  That said, my experience of the gastroenterology department in my local hospital has been excellent, sometimes better than the private sector, even since COVID, so you may be pleasantly surprised on this occasion - hope so!

Unfortunately you will need to consume 2 slices of normal, glutinous bread, or the equivalent, for about six weeks prior to your blood test in order for antibodies to show if you are reacting to the gluten. 

You will need to make an appointment with your GP to have the blood test - if your GP is well informed, they will know about the need to consume gluten for this stated period first.  Whatever you do, don't let them take a blood test without this so called six week 'gluten challenge'.

For an overview of the recommended testing route in the UK, please look at this link.  And note, if your blood tests come back negative, sometimes people still undergo endoscopies to completely rule out coeliac disease because sometimes the antibodies do not show in the blood test in a minority of coeliacs.  This is something you can discuss with your doctors should that eventuality arise.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/

Thanks so much for all of the advice I’ve booked in with the doctor to start the process. I really appreciate your help!! 

[cristiana]

You are more than welcome.  Do come back to us if you need any support down the line, I hope the gluten challenge goes well.