Suspected coeliac no positive blood test

[TiddleTaddleTat]

I have had what GP diagnosed as gastritis (based on symptoms) since March this year. Had horrible stomach pain in left side underneath ribs, often after eating and drinking and especially after alcohol, spicy, fatty foods etc. Also had pale yellow poos, often loose, terrible farting and grumbly tummy.

I radically overhauled my diet and removed all potential triggers which after some experimentation included wheat and dairy. Lost 2 stone felt energetic and amazing.
Spoke to a dietitian who suggested I get tested for coeliac. Since I had only been eating a slice of rye bread here and there I then spent a very painful 5 weeks eating wheat but only managed about a slice of toast a day.

Blood tests just came back negative and I'm at a loss what to do next.

I don't feel I can go through increasing the amount of gluten up to the recommended - I now understand that it should be AT LEAST one gluten dominant meal per day ie a bowl of pasta plus a piece of toast. The amount of pain I get in the few hours after eating gluten is debilitating.

I have also recently worked out through experimentation that dairy is fine for me, but only lactose free. Normal milk causes terrible farts, diarrhoea etc. I understand there's a link between lactose intolerance and coeliac.

Am booked to see the GP but expecting him to rule out coeliac based on this, but I'm convinced that's what it is.

I really want to just give up gluten at this point. Any thoughts?

Then do it! You've figured out that it doesn't agree with you.

I have classic symptoms of coeliac disease but can't get a positive blood test, so can't get referred for endoscopy. No longer eating gluten has changed my life.

NaToth I'm tempted. But there's a nagging voice telling me I should try and pursue diagnosis because it makes it certain. This way I can never fully know if it is coeliac or non coeliac gluten sensitivity. I guess the lactose intolerance is a big clue.

The blood test for celiac is fairly definitive - you either have antibodies for gluten or you don't. The only test that would be more definitive would be an endoscopic biopsy.

Having some gluten in your diet makes the blood testing easier, but it's not a long term requirement. Have you tried a gluten free diet?

@MissConductUS I spoke to a dietitian at coeliac uk and she said that you need to have a 'normal' gluten containing diet for at least 6 weeks prior to the blood test - at least 1 meal a day based on gluten.
So I am concerned I had a class negative blood test due to not eating enough.
I have tried a reduced gluten diet (occasional rye bread) and felt fantastic but still had some symptoms

You absolutely don’t need a diagnosis. If removing gluten makes you better- then remove it.

An official label doesn’t bring anything with it

@SaltyMyDear ok! I am liking the consensus here. I thought that diagnosis would open doors to NhS stuff that may be beneficial. And getting my daughter tested?

If you felt that much better after eliminating gluten then that's what you should do. If you did get a positive test all they would do is say "don't eat gluten".

Just stop the gluten. That's everything, soy sauce and salt n vinegar crisps. It took me a couple of months to feel better and get in a new routine.

My consultant did two blood tests as he thinks I have coeliac disease but both came back negative . The dietician said there was no harm in cutting it out and seeing if it helped, it did.

The blood test for celiac is fairly definitive - you either have antibodies for gluten or you don't

Except lots and lots of people get negative blood tests and then go on to be diagnosed after endoscopy, so not that definitive.

Go to your GP appointment and see what they say, they might surprise you. Coeliac is being diagnosed more and more these days and is much better known about now.

One way or another you need to know if you are coeliac (an autoimmune condition which can lead to other issues) or allergic to wheat/gluten which although unpleasant isn't going to leave you at higher risk of other conditions such as bowel cancer and osteoporosis etc.

You've summed it up. If you aren't eating gluten then your body won't make anti-gluten antibodies and a test for them will come back negative. The only way to be sure is to eat gluten and be retested after a suitable interval.

I was diagnosed as coeliac earlier this year, first by blood test and then endoscopy, and am now in the NHS (England) programme. While my local CCG won't prescribe gluten-free food, it does mean that I will be periodically monitored and should be given a bone scan and vaccinations in case my spleen doesn't work properly. It does seem to grind very slowly though.

Without a diagnosis, you won't be eligible for such things. I'm not sure how important they are.

I do though have another concern. I was seeing a consultant doctor about another problem I have (which is under control but for which I have a hospital review each year) and mentioned by way of updating him that I had been diagnosed coeliac. He said that he had a number of doctor friends who suspected that they were coeliac but simply gave up gluten. It got me thinking afterwards that if people simply self-diagnose and avoid gluten, then the statistics for how many people suffer will be wrong and the problem will slip down in the list of NHS priorities.

So I think you would be better trying to get the diagnosis, but I appreciate that it is something only you can decide.

However, with the level of symptoms you report, I wonder whether you should be asking the GP to refer you to a gastroenterologist?

I will ask to get referred to a gastroenterologist, but I know that to pursue a coeliac diagnosis means reintroducing gluten properly - not just the odd piece of bread. So I will cut it out for now regardless, to see if I feel any better.
Would a week be enough to see results if I go totally gluten free?

@TalbotAMan absolutely - I don't think self-diagnosis is a good idea. I just don't know how I can stop myself from functioning for several months by eating enough gluten to do the full tests!

Gluten can stay in your system for 6 months. So no, cutting it out for a week isn’t long enough

My husband is in the same position.

We aren't trying to get a definitive diagnosis.

Diagnosis brings with it:

• prescription foods in some areas (tho availability reducing rapidly)
• increased vigilance if you think eating gluten may lead to increased cancer risk (the case if you're coeliac)
• increased premiums for travel and life insurance

We decided it's not worth it!

Glad you've figured it out and hope you sleep feeling well.

Thanks, really appreciate everyone's thoughts. This process has been really isolating at times because I have no definitive answers but am eating a very restricted diet because of the pain I've been having. Fortunately I have seen a strong relationship between the stomach pain and the foods I eat, which has helped me work this out on my own.
It may be of interest to others in a similar position to know that coeliac UK are working to develop testing that does not require people to be on a gluten containing diet although it will not be rolled out for a few years, it gives hope to people in future

My dd has Celiac. You're not supposed to change your diet before your tests.

The blood test doesn't work for everybody. If you also have IgA deficiency as well as coeliac disease, the blood test won't work for you. I can't remember the stat of how many people have both.

My blood test result was so low they should have suspected IgA deficiency and ran further tests. No other testing was offered. The doctor simply told me I could still have issues with gluten despite the neg test and to cut it out again (like you, I'd stopped eating it for a while then started having it again and all symptoms came back).

I've not eaten it for years, symptoms all gone. It would be nice to know exactly what I have but it's not worth putting myself through weeks of misery to find out. Interesting to hear about the possibility of a new test.

3 days into eating no gluten and I feel so much more energetic and awake, like a cloud has lifted. Amazing really!

Gluten can stay in your system for 6 months

Can you provide a research citation for that? Food passes out of the GI tract in 24-48 hours. Damage to the gut could take months to heal, and you will have antibodies circulating for several months after your last gluten exposure, but I don't think the gluten remains after digestion and excretion.

The blood test is known as having a very high false negative rate, as others have said, so it's very far from conclusive - which any medic would tell you. And anyway you weren't eating nearly enough gluten, you're right - we had to two main courses gluten-free a day for two months for our tests (never felt so ill ).

Another reason to pursue it is that coeliac is associated with a number of other autoimmune conditions like type 1 diabetes, thyroid conditions etc, so it's good to know if you have that genetic blip (and of course, also helps for knowing whether your kids are at risk).

But I completely understand not wanting to eat more of the bloody stuff in order to have the biopsy!

Perhaps the effects of gluten can stay in your body for six months might be better phrasing. Maybe a bit cheeky to be scientifically picky after giving somewhat medically inaccurate advice yourself

Just posting an update.
I'm so glad I gave up gluten despite not getting the positive coeliac test. I feel loads better, symptoms gone, I've been eating a more normal diet than I had for almost a year ... life changing!

Hurray! Welcome to the club, OP (gluten-free)

@JeanMichelBisquiat Thank you! It's been a revelation. I think I must have developed coeliac about a year ago when symptoms started. Am still lactose intolerant but have been assured that this will improve once intestines have healed.
By the way if anyone else is going through this I highly recommend calling coeliac uk and taking directly to a dietitian, it was so helpful for me.