Response to gluten-free trial?

[Liz33 0]

Hi all, 

I had blood tests done today (full coeliac panel) but am keen to hear your thoughts as I won't get the results back for a week.

I've been having a range of GI and other symptoms for 3 months now including mild diarrhoea each morning, bloating, excessive gas, churning tummy, loud stomach noises and general abdo discomfort. I've also had some spells of lightheadnness/vertigo plus have had my feet turn purple/red and burn uncomfortably each night. I had some bloods done in January for something unrelated and had unexplained high bilirubin, but everything else was fine.

I started to try a gluten free diet 7 days ago just to see what would happen and am interested in whether my response could still be fitting with coeliac. For the first 4 days I seemed to get immediate relief - I didn't have diarrhoea for the first time in 3 months and I had no discomfort whatsoever! But after day 5 I suffered a few of my old symptoms, albeit not as bad.

Today I resumed eating gluten and had 4 cookies + 2 slices of bread - but I still feel quite fine! There has been no reaction that I can glean so far.

So my questions are: 

1) could my responses to both removing and reintroducing gluten still be fitting with coeliac?

2) am I likely to get a false negative after only being gluten free for just 7 days?

Thanks all.

 

[Jmg 300]

22 hours ago, Liz33 said:

1) could my responses to both removing and reintroducing gluten still be fitting with coeliac?

2) am I likely to get a false negative after only being gluten free for just 7 days?

Hi Liz and welcome

1) Yes, although it's very difficult to generalise as people's reactions are so different

2) Impossible to say, see answer 1

Sorry, it really is difficult to be sure. Even a negative test and biopsy doesn't categorically confirm gluten isn't an issue, that's what happened to me. I'd say 7 days would be very quick for the antibodies to disappear however so fingers crossed the test will be accurate. Just stay on gluten now till you know tests are finished. If you get an onward referral to a gastroenterologist you may be in for a wait.  You need to be on gluten for any testing to work.

Make sure you ask for a copy of your test results, some GPS won't, but they will read them to you so take a notepad. Also good idea to keep a food diary so you can spot any patterns between what you eat and how you feel. 

Check out more info here: 

https://www.celiac.com/forums/topic/115138-suggestion-faq-intro-post-for-the-diagnosis-board-input-requested/?do=findComment&comment=970127

On your symptoms, the lightheaded and vertigo I get, abdo yes. Burning feet new one on me, but a search of the forum:

https://www.celiac.com/gluten-free/search/?&q=burning feet

I wouldn't read too much into that. There's nothing gluten can't mess around with!

Best of luck! Hope you find your answers. 

Matt

[Liz33 0]

Thanks so much for your reply Matt. 

Just an update:

I've been back to get my test results today. My bloodwork was negative, however I tested positive for the gene. My iron, haemoglobin, CRP and all my other bloods were good too. I'm disappointed as a positive blood test would have just explained all my symptoms so neatly....now I have to worry about other diagnoses. I was so sure that gluten was the root of my problem. 

I've now been referred for a colonoscopy and endoscopy, so hopefully the endoscopy should shed some further light. I'm really worried that it could be something else more sinister! I'm only 30 so it's unlikely, but still....

I'm hoping that my 7 days off gluten might be to blame for the negative bloodwork.

[Victoria5289 0]

On 5/10/2017 at 8:04 AM, Liz33 said:

Hi all, 

I had blood tests done today (full coeliac panel) but am keen to hear your thoughts as I won't get the results back for a week.

I've been having a range of GI and other symptoms for 3 months now including mild diarrhoea each morning, bloating, excessive gas, churning tummy, loud stomach noises and general abdo discomfort. I've also had some spells of lightheadnness/vertigo plus have had my feet turn purple/red and burn uncomfortably each night. I had some bloods done in January for something unrelated and had unexplained high bilirubin, but everything else was fine.

I started to try a gluten free diet 7 days ago just to see what would happen and am interested in whether my response could still be fitting with coeliac. For the first 4 days I seemed to get immediate relief - I didn't have diarrhoea for the first time in 3 months and I had no discomfort whatsoever! But after day 5 I suffered a few of my old symptoms, albeit not as bad.

Today I resumed eating gluten and had 4 cookies + 2 slices of bread - but I still feel quite fine! There has been no reaction that I can glean so far.

So my questions are: 

1) could my responses to both removing and reintroducing gluten still be fitting with coeliac?

2) am I likely to get a false negative after only being gluten free for just 7 days?

Thanks all.

 

Check for a tumor then check for any gluten allergy like whey