Advice on coeliac test and symptoms please

[sulamaye]

Hi, I am hypothyroid and have been diagnosed with m.e for four years. A nutritionist has recently put me on dairy and gluten free diet to see if it helps with my m.e. I have been on a very restrictive diet some years ago for my m.e but found it hard to maintain.

Recently I found some test results an endocrinologist had taken when testing for addisons and cushings and unbeknown to me she had tested for coeliac disease, at least I think that's what the test was. This is what it says:

Tissue Transglutaminase 0.4 U/ml

TTG Comment Providing the patient was on a normal gluten containing diet, this anti-tTG result makes coeliac disease unlikely but does not completely exclude diagnosis.

The thing is if the silly woman had told me she was testing for this I would have told her that yes at that time I was gluten free! Does the result mean anything to anyone here?

My other question is that having been gluten free for three weeks last week a few hours after dinner I was suddenly struck with the most excruciating pain in my lower right abdomen. When I say it was painful, I've Ben through quite a lot pain wise in my time and this was the worst I've ever experienced that didn't involve a surgeons knife. I couldn't stand or move for some time and when I finally did get to my feet I threw up. I thought I might be having an appendicitis, but I had no temperature and about 10 mins after throwing up the pain lessened some what and then abated over the following hours and although tender the next day has now completely gone. I've been wondering if I had accidentally ingested some gluten could this be a possible reaction? Has anyone else ever experienced anything like this that wasn't an ovarian cyst or an appendix?

I'd appreciate any help.

[XDBB]

I'm sorry I can't help with the numbers. But this interested me - quote - 'The thing is if the silly woman had told me she was testing for this I would have told her that yes at that time I was gluten free! '

because if at the time she tested you, you were gluten-free, then its not surprising that you tested as unlikely to have CD. You have to eat gluten for at least 6 weeks before the test in order to avoid a 'false negative'. This can lead to a very uncomfortable 6 weeks!

There's a lot more info on 'The coeliac, DH and gluten free' message boards - I'll post the link when I work our how to do it.

[XDBB in reply to XDBB]

As promised members2.boardhost.com/glut...

[sulamaye in reply to XDBB]

thank you, yes that's what i thought!

[Thurgolady]

hi - as you've only been gluten free for a short time it is possible to get symptoms for a few weeks /months after going gluten free without having had gluten. I would suggest that as the pain was really severe you should see a doctor in case there is something else going on.

Really Im responding because as you have a thyroid condition it is likely that the ME is down to this and you are probably under medicated. There is a very good thyroid group who understand this sort of thing and also many of the members have gone gluten free as they have found it helps a lot - the site is thyroid patient advocacy and I think you will find a lot of help there.

[sulamaye in reply to Thurgolady]

Thanks I should have said I have explored the hypo side and many ppl tell me my m.e is badly treated hypo unfortunately this is not the case, NDT, t 3 only and taking hydrocortisone have no resolved my m.e. I think these are all parts of the picture but all interrelated and so no single thing is a cure. I am working with the optimum health clinic now, hence the dairy gluten free diet, having tried everything else you can mention including metabolic type diet fishing. The quest for recovery goes on.

[Thurgolady in reply to sulamaye]

Sorry to hear that but give the gluten free diet a chance to work as this made a huge difference to me and I have even been able to stop levothyroxine which is rare

- hope you get sorted - you're doing the right thing in going to that clinic.

[sulamaye in reply to Thurgolady]

Thank you 😊

[glutenfreemumuk]

Hi Sulamaye,

I'm sorry you've been so poorly. Years ago I had ME and the thing that got me better apart from combinations of rest and gentle exercise was intravenous magnesium injections from my GP for about 6 weeks. I just thought I'd mention it in case it helps.

Good luck with the diet. I have to eat gluten, dairy and egg free but I eat really well and most of it is delicious.

[sulamaye in reply to glutenfreemumuk]

thank you - wow was it a private GP? I injected magnesium under DR Myhill's guidance for about 6 months, and B12 but it didn't help. I think having hypothyroid for twenty years prior to it means it hit my endocrine system hard following some major operations. How long were you ill for?

[Chancery]

Hi Sulamaye. I would think that with the severe pain and sudden vomiting it does sound more like an appendix problem. I should think it's very dangerous to assume anything about this, because if it IS appendicitis or a bowel obstruction of some sort it can very quickly turn nasty. I absolutely don't wish to be a panic-monger, but people do die of ruptured appendixes (appendices!?) and bowel obstructions or if they turn septic. It's really not worth the risk when a simple doctor's visit should be able to clear it up.

I could see nausea and maybe vomiting, at a push, if it was a gluten reaction, but not severe pain. I would have it checked out.

[Chancery]

P.S. I should just add that it may have been an attack of biliary colic, i.e. symptomatic gallstones. Biliary colic is considered more painful than childbirth and as someone who was hospitalised by two attacks, I can vouch for that. It is excruciating. Biliary colic would also fit the vomiting but not having a temperature.

Gallstones are almost so 'de rigeur' for anyone who is hypothyroid (I am, for example) that it would be odd if you DIDN'T have them! So if you still have your gallbladder, that is a very likely culprit. Sad to say, once you start having attacks, it's generally all over for you, and you will keep having them and the gallbladder usually has to come out. But again, a doc can send you for an ultrasound and then you will know immediately if that's the problem. Good luck.

[sulamaye in reply to Chancery]

Thanks, yes it cd be gallstones, bother, because I really can't cope with more abdominal surgery, it was three previous ops that triggered my m.e and it's a scar tissue mess in there. Don't know if my body cd cope with another op.

[Chancery in reply to sulamaye]

If it's any comfort, the surgery is generally keyhole and it leaves minimal scarring. Mine's are REALLY small and barely visible. But an ultrasound is non-invasive, of course, and you will know straight away if that's your problem. Small comfort, I know, but it beats years of trotting round docs looking for a diagnosis.

Sometimes you can be lucky and your gallstones won't play up much, but you really have to eat a low fat diet to make that work, permanently. You'd have to decide if you were prepared to do that!

[sulamaye in reply to Chancery]

Unless the pain defers I don't think it can be as my pain was low near my groin and I looked up gallstones and higher, plus I had a liver scan two months ago they Wd have seen wouldn't they? Unfortunately the scar tissue inside me means I can't have key hole abdominal surgery, at least that's what happened with my last op for ovarian cyst, they had to do a cut from above belly button down because too much risk of puncturing bowel.

[Chancery in reply to sulamaye]

Oh dear, that's not good. I did wonder if that would be a problem when you said there was a lot of internal scar tissue.

You're absolutely right when you say that gallbladder pain is usually higher up. It appears in the breastbone and back mostly. That said, it CAN appear elsewhere in the abdomen. I know because they do check you for that and at least one surgeon told me it can pop up in strange places as an abdominal pain. But generally, no, I'd say it was much more likely to be in your back, chest or upper belly. The pain of biliary colic is a bit like what's actually happening inside. You get this sense of pressure, like you're being squeezed and squeezed. It does actually feel like VERY bad wind and once you know what it is you can tell it's a gallstone being forced out through a teeny duct and hurting like hell to prove it!

But it's not absolutely impossible that it's gallstones either, hence I feel you are probably best to rule it out. If you had an ultrasound for your liver they may well have scanned that area too, but if it wasn't an ultrasound then they won't have seen gallstones. Also there is the possibility that even with an ultrasound they may not have looked at the gallbladder. Sometimes doctors can be very focussed and miss the most glaring things.

If the pain was low in your abdomen then appendix or a bowel obstruction are the most likely (if it's your gut and not ovaries or something). It couldn't have been a kidney stone, I suppose? They give you backache low down, I believe, but I know the pain is supposedly excruciating and can cause vomiting, and, of course, it will pass when the stone passes, so that one is a possible fit.

Of course, you maybe just got VERY bad wind! I have had wind that has been like a knife in the guts, but that vomiting is not really appropriate for wind and is definitely a warning sign. Wind doesn't make you vomit. Instead of scaring yourself with possibilities go and see the doc. It will put your mind at rest much faster!

[sulamaye in reply to Chancery]

The health care in Wales is so bad, I'm not going to bother my GP unless the pain comes back. With m.e I'd rather stay at home and be in pain than go to A&E or see a GP because their attitude is so hard to take and its so exhausting to go. Thank you, if it comes back I'll go.

[Chancery in reply to sulamaye]

Oh, you poor thing. I get the exhausting part. I never go to the docs without feeling more depressed than when I went in! But you've got to remember it's their job; they're getting a nice big fat salary to help you - make them earn it.

I notice you use the expression "bother my GP" - you must drop that for the good of your health! You're not bothering anyone - like I say, it's their job. Change doctors if they are giving you too much grief.

The very best of luck, and take care of yourself. X

[sulamaye in reply to Chancery]

Thanks, to be fair my new GP is 100% better than the last, but when you've got m.e there's not much they can do for you. BUt some good news my new GP sent me to an endo and although it took 6 months to see him I saw him today and got at least half of what I wanted out of him, namely a script for 60mcg of T3 and a promise to see if he can prescribe me the other thing I am currently self medicating with. So i'm pretty shocked, but pleasantly surprised!

[Chancery in reply to sulamaye]

Ace! That's the kind of result I like to see. More power to you; you're obviously more assertive than you realise! X

[sulamaye in reply to Chancery]

Don't worry I am assertive, just don't waste my precious energy where the door is closed. It's amazing how transformative it feels to be able to discuss your health with a doctor who treats u as the intelligent human being you are. If only they could all manage it. You should have heard the argument I had last summer with the stupid GP who took my t3 and 50 mcgs of my t4 away last year! However in some ways I have to thank her for making me relapse it started me looking at the role my thyroid was playing in my m.e properly. I had hoped it Wd be the solution, but sadly only a part of the puzzle.

Thanks for the support, I do think health unlocked is a great advert for humans at their best helping each other. Especially welcome when the media insists on only showing us the darkness of human nature!

[Chancery in reply to sulamaye]

That's good to hear. I always worry about poor sick souls beaten down by the system, with no-one to fight their corner. Glad to hear you're not one of them and you're fighting back! It's really hard to fight doctors when you are ill; I think they rely on that.

And I know what you mean about meeting a doctor who listens and respects your intelligence. I've lost count of the times my doctor, who is far from the worst, has said something to me that is so profoundly stupid or insulting I am generally raving "Does he think I'm an idiot?" and variations on that theme, for the next four days!

M.E. is a horrible condition to have (you seem to have a full deck of autoimmune issues - is it Hashimoto's you have as well?). It's only been 'accepted' as a real condition fairly recently, and lots of doctors still don't believe it is. That sneering disbelief and disregard can permeate in a thousand horrible ways into their attitudes. But if you are fighting that and a thyroid problem at the same time, and possibly coeliac, you must be having a real struggle staying awake, never mind anything else. Hopefully, things will improve for you some day soon. X

[Polaris in reply to sulamaye]

I would be suspicious of a diagnosis of ME, Sulamaye, as nitrous oxide used in anaesthetics inactivates B12 if you are already low. My relative, who was vegetarian, was diagnosed with ME for years, at one time in a wheelchair. It turned out to be severe B12 deficiency after anaesthetic triggered neurological symptoms, which was then wrongly diagnosed as dementia. Monthly B12 injections have given her back her life.

b12deficiency.info/films

b12deficiency.info/signs-an...

cmim.org/pdf2014/funcion.ph...

[sulamaye in reply to Polaris]

Thanks, I started self injecting b12 under Dr my hills guidance about 6 months after I got ill. Same with magnesium. Still ill.

[Jacks]

If it is urgent enough to mention it on here then any low pain and associated vomiting should be investigated. Pain in the right side would not have you noticing faecal blood. Why wait for it to happen again when you could potentially have bowel cancer? Early diagnosis or elimination is essential.

Of course it could be ibs - as in slow transit of stools and subsequent constipation, both associated with hypothyroidism.

Just a thought.