Gluten Free Guerrillas
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Anyone had more than one negative blood test???

I just watched a video from the University of Chicago about what to do if you have a negative blood test:

The doc says that the antibodies they test are made in your stomach and have to be in large enough numbers in your blood to be detectable. Isn't it possible therefore that they might not be detectable for one reason or another, if they are not making it into your blood, or you are not producing enough of them? I assume this is why IgA levels make a difference - I can't think what other reasons there might be though! But still, we're only just learning things like people with Restless Leg Syndrome can have high blood counts for iron but that iron isn't making it to their brains. They tested RLS sufferers and found their brains were low on iron - hence iron working for some RLS sufferers (I'm one of them) despite them having perfectly normal blood iron levels.

This is just one of my many 'clutching at straws' posts, which I'll be getting famous for at this rate, but I just bit the bullet today and made an appointment with my doc with a view to further testing/seeing a gastroenterologist and I'm desperate to put the best case I can forward. (I've had no fewer than 3 negative tests, but I do have low IgA, so they maybe don't count! But I have also had an IgG test and that was negative too, so you see my problem!)

If ANYONE knows any reason/s, other that the usual offenders, for having negative test results, or if you had more than one negative test yourself then were found to have coeliac, I'd love to hear from you. I feel undermined already and I haven't even seen the man yet, so any info at all most gratefully received. Thanks!

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coeliac.org.uk/coeliac-dise...

ncbi.nlm.nih.gov/pmc/articl...

Quote: "Antibody testing, however, is not the absolute method of diagnosis. We present a case of an elderly man presenting with coeliac disease in whom the condition would not have been recognised without a second duodenal biopsy."

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I am now deeply conflicted, Frodo, thanks! I'm just teasing - that is a first rate article but I had already decided I was being an idiot and was going to cancel the appointment but now I am back to wondering if I shouldn't pursue it after all.

I found it hugely interesting, and a very strange coincidence, that the chief reasons I was thinking of coeliac again was because I had had steroids and they'd made me feel so well and because I developed oedema in my ankles and quite severe breathlessness, all after eating far more wheat than I normally do - this man had ALL 3 of these things, including the huge improvement on steroids and the oedema, just the same as me. What are the chances?

Incidentally, I just wrote to Coeliac UK and asked them if breathlessness and oedema could be caused by coeliac disease and was assured they could not - obviously they haven't read this study.

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Some further reading that may be useful (?).

sciencedirect.com/science/a...

Hope the doctors appointment was successful.

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Thanks Penel, that's a very comprehensive article. I'm going to give it a couple of read-throughs; there's so much info in it. I have, of course, considered NCGS, but it's not taken terribly seriously by doctors, and many of them think it's a fad out of women's magazines. My worry is that if I 'settle' for that diagnosis I'll never know if I have coeliac and, knowing me, will continue to have the odd bit of wheat when it's convenient, like eating out and on social occasions, which, of course if I had coeliac would be a disastrous thing to do. In other words I fear my own laziness!

I've not seen the doc yet - this is Scotland's NHS, no appointment less than 2-3 weeks away! I keep changing my mind about whether to ask him about coeliac or just consult him on the oedema/breathlessness. I feel very foolish (and cowardly!) about bringing coeliac up. I'm hoping all will become clear before I see him.

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Attitudes / knowledge about NCGS are at the stage that Coeliac disease was many years ago.

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Yeah, funny you should say that. When I first looked into coeliac, NCGS was really a big no-no; crazy talk. My doctor at the time of my first test had never heard of it and he did the eyebrow cock - you know, the one that says 'The next thing I say will be hugely patronising'. But I imagine my new docs, who are all younger, will not only have heard of it but might even believe in it. Isn't medical science wonderful? Except for the long-suffering patient, of course.

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P.S. I notice when I'm looking at studies and new research on both conditions, the new thing is for doctors to declaim they 'don't believe in the neurological effects of gluten'. Oddly enough, my trigeminal neuralgia was my prime motivator for driving my determination to be tested and retested for coeliac and every single doctor, from my GP up, all said 'What does Trigeminal Neuralgia have to do with coeliac? It's not a neurological disease.' I wouldn't be at all surprised if in years to come they discover gluten does have an effect on (rare) diseases like TN, even if it isn't causing them, per se.

Just as an aside, I remember my doc also asking me if anyone in my family had coeliac, the implication being if I didn't have a relative with it I couldn't have it. I told him no, they didn't, but my dad had suffered with gastric problems all his life (and worse - he died of colon cancer eventually, albeit at an old age!) so he could have had it, undiagnosed. I remember his look of utter disbelief, but my dad was born in 1918 - hardly a surprise if he'd never been diagnosed - people aren't diagnosed now! I do wonder sometimes what, exactly, goes on in doctors' heads when they trot out 'proof' arguments.

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Professor Marios Hadjivassiliou, from Sheffield University, has investigated the neurological problems caused by Coeliac and NCGS. Worth a google if you haven’t come across him before.

I fear that low levels of diagnosis have blighted many lives. My uncle had the same problem and outcome as your father.

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Yes, I was recommended to the Prof by people on here when I was being tested the second time. I did actually ask my doc if he could do a referral to the English NHS, but he didn't want to know. It would be positively wonderful to go to Sheffield and be tested/treated there, where the doctors actually a) believe in the diagnoses and b) don't have that blighting scepticism which makes them discount everything. Probably a couple of tests there and I'd have all my answers, be they positive or negative, but it's not to be. Thanks for all your help - I appreciate it.

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Regenerus Labs do the very intensive testing for Coeliac/Gluten intolerance - far more than the NHS. Was done by Cyrex labs in the US.

Surely - wouldn't it be best to just go Gluten Free and enjoy the benefits. Am sure I have mentioned Dr Datis Kharrazian before to you - so perhaps time to re-visit :-)

Oedema - sounds as if you are back to re-visiting low thyroid ?? :-) The body produces fluid when overheated in an attempt to cool the circulation ....

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Hi Marz, nice to hear from you. Yes, I remember good old Regenerus. And yes, you are absolutely right about going gluten free. If I chicken out and don't bring it up with my doc that's probably what I'll end up doing. It does have the advantage of costing nothing and giving you, hopefully, a clearer idea of whether you genuinely have a problem.

With the oedema, it coincided with the very hot weather we're having here so I put it down to that. Then it got worse, and worse, and the weather has cooled a little and it's still really bad. Unfortunately it has also coincided with a period where I hurt my back really badly so I have been largely chair-bound for more than two months. I do try to go out each day, but in the house standing for any length of time hurts, so I end up sitting to try and ease the pain. I tried (again!) to lie on the floor today with a view to putting my legs in the air and help them to drain but I can't lie on the floor. Even my bed hurts. I slept on the sofa for the first 8 weeks and am contemplating going back to it because I'm wondering if the bed's making all the other pain I have (my back now hurts from my shoulders to my hips - the original injury site) - it even hurts to cough or sneeze! SO it's quite possible that the oedema is at least being aggravated by this, if not caused. It was ever thus, trying to disentangle what's responsible for what.

Needless to say if I chicken out of speaking to the doc about coeliac I'll ask for a referral for my back. I think it's getting a bit overdue. More than anything I could do with some guidance of what to do to help it.

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Swollen ankles/legs is something that USED to happen to me when flying or sitting over long meals ! I always took elastic bandages away on holiday and kept them in the fridge by day and applied them at night ! Not a pretty sight !! Blood needs to return to the heart from lower limbs - if sluggish then the area overheats - fluid produced to cool the blood to aid the upward journey. Sadly Docs prescribe water tablets which does not address the cause. Have not ever taken them.

Back pain over a large area sounds more muscular. What was the injury ? Magnesium could help - sprays are good and B12 jabs. Have just increased mine. Gut inflammation from gluten sensitivity can cause widespread muscle pain too.

Please do not be influenced by the flip comments from Docs - patient experience is more valuable ...

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Yeah, I know gluten/coeliac can cause joint and muscle pain; it was another reason why I was worried, since I now have more pain than when I started! The original injury was me trying to pull a wheelie bin full of stones up a step. I pulled/ripped/popped something in my lower back - I felt it give. It was agonising. I saw an out of hours doctor and she said it was muscular, not a slipped disc. I ASSUME the comprehensive pain I'm now feeling is because all my other muscles are having to compensate for the damaged one, but it really is wearing. EVERYTHING hurts.

To further compound the issue (why is everything so damn complicated?), I've been using Movicol laxatives because as soon as I stopped Omeprazole my guts seized up like nobody's business. I assume Movicol pulls water into the intestine, so it's possible it's contributing to fluid retention. This is my pattern and has been for months now - whatever drug I use, no matter how allegedly innocuous, it creates a side effect that's often worse than the original complaint! It's like my body has decided it has had enough and is letting me know it, in spades. I've stopped the Movicol temporarily to see if that's the culprit. Might at least be able to rule that out!

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Instead of laxatives you can use chia seeds, flax seeds, probiotics, psyllium husk etc. draxe.com/natural-laxatives/

I have also used Slippery Elm powder made into a thin gruel with a stubborn stomach problem to good effect.

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Thanks Frodo, I already take probiotics twice a day, but I've never had great success with psyllium husks etc. That type of fibre tends to just build up in my gut and add to the pain & bloating rather than move things along. Wheat based fibre is even worse. The most successful laxative I've ever used was Lactulose, which apparently works by pulling water into the colon by osmosis - or something; I can't remember it clearly now! If it turns out the Movicol is playing a part in the oedema I'll ask my doc for Lactulose again and see how I get on with that.

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P.S. I have always meant to try Slippery Elm though!

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I have a referral to the prof as I tested negative but have a lot of neuro symptoms. I’ll ask them if they take non uk referrals. Where are you based?

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Hi Caroline, I'm in Scotland. I've had a look through your posts but I can't see whether you've been diagnosed with coeliac or not? I would love to see Prof Mario, if that's who you are talking about, but when I broached the subject with my then doctor in 2015 (I have a different one now) he didn't have the first clue and told me to write to the doc myself, but as you doubtless know, doctors, especially important consultant type ones, won't take a self-referral seriously.

I've never pursued it because I don't know if I genuinely have a wheat/coeliac issue, but of course that's a Catch 22 situation because without validation from a doc I can't get validation from a doc! Any assistance/suggestions most gratefully accepted...

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