Negative Bloods

[sunilrana09]

Hi all, I am from the UK and have had tummy trouble over the last few years. I sometimes get really bad constipation and diarrhea alongside vomiting. I also have a lot of bloating and stomach/addominal pain on a regular basis.

Anyway I recently got in touch with my doctor and suggested I take a blood test for celiac desease. It has come back negative and they said my results are fine including my iron levels etc. No further action is needed.

However after having bloods I thought i will try going gluten free. It's been just over a week of consuming hardly any gluten and my symptoms I have been feeling for years seem to be subsiding and I am feeling more energised and my tummy area no longer hurts.

Am not sure what to do now as my bloods came back negative? My doctor goes to introduce gluten back at a later date and see what happens? 

If I do have anything with gluten in it I start to feel a little bit of pain in my tummy. More along the lines of cramping and tightening. Bloating too.

I am lost what to do? Do I just go gluten free if it seems to be going fine? Doctor has even said I could have had a bout of really bad IBS. 

But I have this problem all the time when I consume gluten foods. 

If I do go gluten it is kind of self diagnosing myself as bloods came neg and my doc hasn't said anything else at the moment. 

Is It harmful or unhealthy to cut out gluten products? Should I still be having it? 

Thank you 

 

[GFinDC]

The doctor is right, you would need to eat gluten for 12 weeks for the blood antibody tests, or 2 weeks for the endoscopy test.  The result if you test positive is they tell you to go gluten-free.  if you are willing to skip that process and tell yourself to go gluten-free, then that is fine IMHO.

[Awol cast iron stomach]

I went gluten free the first time and felt great after 2 weeks. I saw myself improve on many levels. We had a shared household back then, but I did my own toaster separate cabinets etc. 

3 years later I got badly glutened got very ill and went for testing. My testing went on for months trying to get in team of Dr s etc. I attempted a 2 week gluten challenge with endoscope and colonscopy. I joined this forum. I was very ill after that. I got an NCGS diagnosis and was told to have a gluten-free household. This forum help me realized what I did wrong the first time.

It is a personal decision as to weather to go gluten-free without official diagnosis, and sometimes even then you find yourself back at a Dr to confirm. If I had not gone through the gluten challenge I don't think I would have made our whole household to gluten-free. The challenge, testing , and illness showed my family why we had to go whole house gluten-free.

Out of desperation I tried gluten-free diet first time as I realized I had continued issues. One day I read scientific research article and said I don't have IBS  I am intolerant to gluten. I did not realize how strict I had to be for my health until I met my immunologist and team that properly diagnosed me and joined this forum.

Edited July 3, 2020 by Awol cast iron stomach
Autocorrect incorrect

[sunilrana09]

I eat gluten foods everyday in my normal diet before the bloods. Consumed bread, gluten foods as per normal. The bloods came negative.

 

It was only after the blood test results I decided to try a gluten free diet. It has been nearly two weeks. I consumer a gluten free diet and was feeling must better.

 

I have today had gluten food and my pain even though minimal started again. I had it today to test to see if it would affect me and it did.

 

My doctor has said to try gluten free foods and then reintroduce it.

 

Not sure what the next step is. I can't ask for another blood test again so soon?

 

[Joshh]

Hi! 

I think we're in the same position, I have had bloods on a diet containing gluten and they came back negative. 

According to my GP, there are different antibody tests, and the NHS site says not all coeliacs will test positive for antibodies. One of the best ways to get a good diagnosis is the biopsy, but even then there is a false negative rate. 

My GP wants to conduct the other blood test, but I have just started my gluten free diet and would hate to have to spend another 6 weeks ill if I don't have to. 

I think what we're finding as well in the COVID situation is that making an accurate antibody test is very difficult as people produce different levels of antibodies, or the immune response may be mostly confined to T-cells. 

It is unfortunate how poor the screening is for this condition and I may end up joining the large group of people who have found themselves spending years uneccesarily ill because of mis-diagnosis. 

[sunilrana09]

1 hour ago, Joshh said:

Hi! 

I think we're in the same position, I have had bloods on a diet containing gluten and they came back negative. 

According to my GP, there are different antibody tests, and the NHS site says not all coeliacs will test positive for antibodies. One of the best ways to get a good diagnosis is the biopsy, but even then there is a false negative rate. 

My GP wants to conduct the other blood test, but I have just started my gluten free diet and would hate to have to spend another 6 weeks ill if I don't have to. 

I think what we're finding as well in the COVID situation is that making an accurate antibody test is very difficult as people produce different levels of antibodies, or the immune response may be mostly confined to T-cells. 

It is unfortunate how poor the screening is for this condition and I may end up joining the large group of people who have found themselves spending years uneccesarily ill because of mis-diagnosis. 

Ive stuck to the gluten free diet in the end. GP wants me to try an introduce gluten foods back in. But I have accidentally consumed it on some days and get those symptoms again. Think I am just going to stick to gluten free since I am having no problems.

[cyclinglady]

49 minutes ago, sunilrana09 said:

Ive stuck to the gluten free diet in the end. GP wants me to try an introduce gluten foods back in. But I have accidentally consumed it on some days and get those symptoms again. Think I am just going to stick to gluten free since I am having no problems.

The most important thing is feeling good.  I am glad the diet has helped you.  My own hubby went gluten free over 20 years ago and never looked back.  No formal diagnosis.  We know that gluten makes him sick.  Years later I was diagnosed with celiac disease.  Both of us feel great.  
 

Take care.