Blood test results

[KT90]

Hi everyone,

 

I’ve just received blood test results and was wondering if anyone had any advice. I called the surgery and was told that my results had ‘come back clear on the tissue transglutaminase’ test, so I don’t have coeliac disease. From what I’ve read, however, it’s possible to test negative on tTG but positive on other markers, and from the sound of it I wasn’t tested for any of the others. I’m going to make another appointment with the doctor, but I have a long history of being fobbed off by them because the specific thing I’be been tested for comes back negative, so I have very little faith that I’ll get anywhere with them! 
 

I've kept a food diary for a few weeks, and it really seems like there’s a big correlation between eating gluten and the onset on my symptoms, which are:

extreme fatigue

stomach pain

nausea

diarrhoea/occasionally constipation 

brain fog/inability to concentrate - sometimes I just cannot think of the words I need

indigestion

aches and pains throughout body, often in my chest which has caused me quite a lot of anxiety and a few other doctors visits!

unintentional weight loss

nerve pain - had a big issue with my left shoulder a few months back, plus wrists and index finger knuckle

depression and anxiety

mild rash/eczema, often super itchy all over after eating gluten

 

I guess I’m just looking for opinions on what other people would do - chase for a diagnosis, whether of coeliac disease or something else, as there’s definitely something wrong! Or try going gluten free for a few weeks and seeing how I feel - I’m a bit worried about this as I think I’m the kind of person who needs the diagnosis to take the diet seriously, and I know if I want tests later on I’m going to have to then do a gluten challenge. I also would like to know how much damage has been done if this IS coeliac, so would want an endoscopy if possible. I’m just not sure if I’ve read so much about the condition that I’ve convinced myself it’s what I have, even if that’s not the case! I’m just really downhearted after waiting for long to even get the test and then the results and then being no closer to finding out why I feel so awful so much of the time. 
 

Any advice would be massively appreciated as I’m just so uncertain of what to do at this point! Also apologies if this has funky formatting - I’m on my phone and it doesn’t want to play ball!

 

Thanks,

 

Kate 

[trents]

Welcome to the forum, Kate!

If you feel your docs are beginning to blow you off there is the option of a home test kit for celiac disease that can be purchased for a round $100 USD.

Whether you do another serum antibody test via home kit or have it done through your doctor, ask for a full celiac panel: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The TTG test is the most specific for celiac disease but the least sensitive.

You should do some research on dermatitis herpetiformis and compare pictures of it with what your dermatitis looks like.

Ultimately, because by your own admission it would help your resolve to stay on the gluten-free diet, you may want to consider an endoscopy/biopsy but I understand that in the UK they are hard to arrange right now because of COVID.

[Scott Adams]

Hi Kate, welcome. Is there any chance you can get a copy of the blood test results and share them with us, including the ranges for the tests? Sometimes you can have elevated antibodies which fall a little below the cut off. When this happens it can indicate gluten sensitivity, which, at the very least, your detailed description of your symptoms after eating gluten seem to indicate anyway.

Also, it wasn't clear so I want to ask, were you gluten-free at all during the time period leading up to your blood test?

[KT90]

Thanks both for your replies! I think I will try to push for further testing or maybe even consider going private for it. 
 

Scott - yes, I was eating gluten, though I wonder if it possibly wasn’t enough as I wasn’t given any guidance. I was having a sandwich (two slices of wheat bread) virtually every day though and sometimes cereal for breakfast as well - essentially as much gluten as I could stomach given the fun symptoms! I’ll speak to my doctor and see if they can give me access to my results. 

[trents]

2 minutes ago, KT90 said:

Thanks both for your replies! I think I will try to push for further testing or maybe even consider going private for it. 
 

Scott - yes, I was eating gluten, though I wonder if it possibly wasn’t enough as I wasn’t given any guidance. I was having a sandwich (two slices of wheat bread) virtually every day though and sometimes cereal for breakfast as well - essentially as much gluten as I could stomach given the fun symptoms! I’ll speak to my doctor and see if they can give me access to my results. 

That should have been plenty of gluten to give a valid serum antibody test as long as those eating habits were being practiced at least 8 weeks prior to the testing. But again, the TTG is only one component of the celiac panel and the least sensitive.