SO... miserable

[RcKitty]

My blood test came back negative! I know this is actually good news but my reaction was shock, disbelief, confusion.. how could this be? is it possible that I could have a negative blood test and still have a postive endcsopy. I am in sorry shape right now... the gluten challneg has become unbearable ..but I still want to know with certainty if I have celiac or not.... or just a gluten sensitiviy

my symptoms are so severe as they were many years ago before i first went gluten free ...

I also did t=get a genetic test a few months ago and tested positive for that, so gi still thinks I should get the endoscopy, meaning another 2 weeks of gluten HELL!!!! ;( ;(

[purplewalker]

My blood test was negative and my camera results borderline but consultant told me to give up gluten and if symptoms eased he’d diagnose me as coeliac. Followed instructions and felt great. Consultant left by time of checkup and new one felt not enough evidence so told me to go back to gluten and repeat tests 😩. Negative but he was unhappy that clearly a gluten free diet has benefitted me so did a genetic test ( H something ) which came back positive so gave advice to stay gluten free. Since doing so, symptom free but an error does now mean a worse reaction. I am officially diagnosed st my GP as Coeliac despite the unusual results. Hope that helps.

[Hidden]

I feel for you. I desperately wanted a coeliac diagnosis to start to make some sense of my horrible symptoms. I had a lot of coeliac tests over the years all came back negative (I think maybe one came back with a borderline of 7 O vaguely recall). I was lucky to have a really sympathetic GP who referred me and the biopsy came back showing substantial villous atrophy, showing decades of untreated coeliac. A biopsy a year later still showed areas of damage although I am neurotically gluten free. I am still dealing with the consequences over 2 years after diagnosis, but think I'm (slowly) getting there. So don't despair - though I know this is no help with having to stay on the gluten for longer. Really good luck.

[Galixie]

I can sort of relate. I've had multiple tests done and only one ever came back positive (gliadin IgA), but that positive wasn't considered strong enough evidence of celiac. So I've been told multiple times that I don't have celiac, that it's nothing autoimmune, but that I might have non-celiac gluten sensitivity.

It messes with your head to not have a firm diagnosis. In my case it made me lax about cross contamination because NCGS is not supposed to be able to cause the type of intestinal damage that celiac can cause.

That lack of a firm diagnosis plus the difficulty of finding gluten free foods in my area got me really frustrated and lead to me just giving up and going back on gluten a few months ago. I started having ulcer-like symptoms about a month after going back on gluten and blood tests are now showing nutrient deficiencies that shouldn't be possible with 'just' NCGS.

The odds of me getting more testing done, or anything actually coming back positive are slim to none. If I do have actual celiac, all of the doctors I've seen have managed to miss it for the past *eight* years.

But I can completely relate to wanting to know for sure. Being in limbo is awful. You have my sympathies.

[Penel in reply to Galixie]

Have you tried looking for gf foods on line?

[Galixie in reply to Penel]

No. I don't purchase anything, including food, online. I guess I'm old-fashioned.

Part of my frustration is that I'm seeing the grocery stores in my area discontinue carrying a lot of gluten free products. It's not just one store. It's all of them. The weekend I got so fed up and went back to eating gluten was because I had just gone to four different stores and not come away with enough for an actual meal (what I would consider a meal, anyway). I wasn't mentally prepared for all of the stores in my area to stop carrying the gluten free products I had come to rely on all at once.

My symptoms are pushing me back toward going gluten free again (at least to see if the symptoms go away). I just need a different game plan.

I do hope RcKitty gets a definitive answer. I'm still looking for one of those, but I fear I may never get one.

[Penel in reply to Galixie]

Going gluten free can be a challenge especially if it means a radical change in your diet.

As you are in the USA, perhaps the book by Alessio Fasano called “Gluten Freedom” might be a useful read. He’s one of the experts in the field.

[Penel]

Sorry to hear you’re having a rough time. Unfortunately it’s quite possible to have a negative blood test but a positive biopsy.

coeliac.org.uk/healthcare-p...

[Hidden]

One possibility might be to try the low-carb/ high-fat (LCHF) diet that eliminates not only gluten but grains and starchy vegetables in general. Lots of people have had tremendous health turn-arounds with this, but of course it's more drastic than just gluten free. Just a thought.

[esteloca]

So sorry you're going through this!! From all the research I've read, I'd say yes you can still have a positive biopsy and even if you don't, the fact that you're so symptomatic along w the genetic testing results coming BK positive could mean you do have it.

There's always an oddball, I'm one myself. Everything they told me I definitely don't have, I ended up having.

Hang in there!!