Hi, I'm looking for some guidance. I have a disease called Trigeminal Neuralgia, a rare degenerative and incurable condition where your trigeminal nerve shoots electrical shock pains into your face at random moments. I read recently that unexplained neurological conditions might be a sign of gluten sensitivity (In Grain Brain by Dr David Perlmutter). Because of constant gastrointestinal issues, I was tested a couple of years ago for coeliac disease and found to be negative, but this new condition has made me concerned that maybe there is something to gluten sensitivity as a cause, as I know the blood test can give false negatives.
My symptoms that MAY be relevant are gastric pain, bloating, constipation, gallbladder problems leading to loss of gallbladder, oesophagitis, ridged, permanently flaky broken nails, (very) dry itchy skin, chronic urticaria, tiredness, depression, loss of cognitive skills and memory. I appreciate these may indicate other problems but I am trying to pin down a possible cause for my TN as it is important to me to at least stop further degeneration even if I can't cure the disease now. Is it worth being retested for coeliac, or am I barking up the wrong tree? I have never suffered from a runny tummy (quite the opposite) or weight loss (again, quite the opposite - chronic food cravings and addictions are more of a problem).
Any advice most gratefully received...
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Chancery
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Hi, I do not have Coeliac Disease, however I am gluten intolerant which is now more recognised. bmj.com/content/345/bmj.e7907
Also be aware that the TSH test used to test Thyroid disease is flawed, and symptoms are often ignored, the fatigue, the brain fog etc and also gall bladder problems are common with this. Also nail problems not unusual. Depression and poor cognition is common with an untreated Thyroid disorder. Also good to check your vitamin D, Iron and B. I have five autoimmune conditions, the gluten and Thyroid bit was the last piece in the puzzle. Thyroid UK is the best source of information , and they have a forum on here. MaryF
Hi Mary, thanks for the reply. I have considered thyroid as an issue and, again, that was tested many years ago and found to be "normal" but I never saw the results for that (I wasn't up on actually asking to see the results and checking them for myself in those days!) so I don't know how 'normal' they were. There is a family history of low thyroid so that's a possibility. I will try and pick up courage and ask for it to be tested. I'm always afraid of my doctor's scepticism when I try 'left field' testing but as I always say it's not him having to put up with this disease so he doesn't get to refuse tests!
Please be aware that many people fail that silly TSH test and are told they are normal when they are not, Thyroid UK has educated me, I went outside of the NHS and extensively tested and I am..... your symptoms probably fit. Also many with Thyroid have gluten sensitivity. Best of luck to you. MaryF
Yes, I remember reading that the first time I was tested but like I've said elsewhere here, I was diagnosed with gallstones shortly after the tests so everything else kind of got swept out the way. Now I don't have a gallbladder but I sure as hell have many, if not all, the same gastric problems I had before my gallbladder was removed in a supposed cure. So this time I won't be quite so happy to accept a doctor's word for it.
I have a completely irrational belief that there is an underlying cause that connects my TN to my gastric problems. I think there is a system breakdown and I want to know what it is. I'm on very strong, destructive medication and it's important to me to cure as much of me as I can and stop any damage that is permanent from getting worse. Unfortunately that's not how doctor's work on the NHS, or perhaps in Western medicine at all. Still, got to plough on...
Thanks for the links. I'm going to have a thorough research.
That is ok, I have five autoimmune diseases, the Thyroid was the last one that I worked out, by the way gallbladder problems prevalent with that. I went along to the recent TUK conference, very interesting and helpful for me for the forum I work on. B12 deficiency is often missed or the low levels ignored... and common with those with gut problems and Thyroid issues: omicsgroup.org/journals/216...
Thanks, Mary, that's a great article. I think I used an abstract of that in my dossier to my doctor (he took a LOT of convincing to treat me for low B12) but I haven't seen the full version. It's very interesting to see that they note in there that the testing for B12 helping TN stopped around 1954. I'd noticed that too (great minds think alike!). I have a theory that anti-convulsants were either discovered then, or at least discovered to help TN and the Pharma companies stood to make a lot of money out that so why research cheap B12? Tragic, but not unlikely. Thanks again; it cheered me up that I'm on the right course. Sometimes I feel like it's me versus the medical establishment!
Yes you will have to do it yourself, this guy.... spoke at the TUK conference and was excellent, a good contact and his book is on the net: martynhooper.com/ The reason he was booked is due to the connection. Also other sites to look at are the forums on the net for Dr Myhill, message me if you need any further help. I have lots of contacts. MaryFx
Hi Mary, yeah, I know of Martyn - I've read his book and belong to the B12 forum. I'm a bit of an 'outsider' there because I don't have pernicious anaemia, but they have all been great and very generous with their time, helping me out with links to everything I needed. It's always a bit rough when you don't have the classic symptoms and are afraid you are being the village idiot in thinking this might be your problem, but I feel sure these things are connected. I am a bit CIA when it comes to illnesses - "there's no such thing as a coincidence".
I am just going to look up Dr Myhill now. And thanks for the offer of help - I very much appreciate that; it's very kind of you. I'm just going to try and friend you right now (navigating these forums is not my strong point!) so that I can exploit your kind offer at every opportunity. No, I promise not to, but I shall definitely take you up on that should I need it. Thanks again.
Just do not lost sight of your Thyroid, there is a dire need for change across the world. thyroidchange.org/
and the petition from TUK, as of course if you are lucky enough to pass the test they give you Thyroxine, and in many cases the older medicine which is natural works better! epetitions.direct.gov.uk/pe... and do at least join TUK on here! as well as this one: youtube.com/watch?v=lyc8N_m...
I have autoimmune problems too, starting with RA at the age of 23, adding others as the years progressed! When I developed symptoms of CD I tested negative. However, it is obvious that I have a very sensitive intolerance of gluten, which is probably non coeliac gluten sensitivity. The treatment is the same, total avoidance of gluten.
If you think it may be an issue, you could cut out gluten for a month and see if you feel better. But, be warned - if this makes you feel better you may not want to eat gluten again thus making further testing impossible.
Perhaps it's better you get to your GP and discuss re-testing. If the results come back negative again, you've nothing to lose by undergoing a test period of being gluten free.
Hi Sally. Yeah, I've actually tried wheat-free in the past and found it very helpful, in that it gives me more energy and I get less food cravings and bloating, but my constipation always gets worse and I find it so VERY difficult to do. The world is really built around wheat! But yes, I think I need to bite the bullet and get some further tests done. I need to break my GP in gently to the idea, I think, and try and think up saleable reasons for the testing - he's a sceptic who always wants concrete evidence for why you need tested!
I agree with Mary F. I would also have your B12 tested urgently. The range in the UK is usually between 180 - 800 - although labs do vary. You may have a GP who thinks if you are in range then things are fine. Your B12 needs to be well above 500 to prevent cognitive problems or neurological ones.
When having your Thyroid tested ensure you have the TSH FT4 FT3 and Anti-TPO - Anti-Tg done. Also Ferritin - Folate - VitD - B12 - Iron. All need to be OPTIMAL and not just in range.
Your signs and symptoms certainly point towards being Hypo.... If your TSH is over 2.5 then your GP will say your are normal - sadly not. The under diagnosis of Thyroid problems is a scandal....
The main website of Thyroid UK will tell you everything you need to know....
Hi Marz, you actually know me from the B12 forum! I'm already on B12 injections, I'm just doing ongoing research for possible causes for my TN. I was tested for thyroid several years ago and passed as "normal" but unfortunately I don't know exactly how normal that "normal" was! It was a different doctor so I think I will have to have it retested. There are times when I wish I was American and could go for routine physicals where they test EVERYTHING. It would spare all this testing and more testing in bits and pieces to try and get to the bottom of things.
Incidentally, the B12 is proving very helpful. So helpful I'm afraid to say so out loud and jinx it.
So glad the B12 is working well - sssh Sorry I did not realise we had met before ! I would try to have the testing done I have detailed in the earlier post and ensure you obtain copies of your results ( your legal right ) - with ranges - and pop them onto a new post on Thyroid UK HU. So many people there ready to help and support. Finding a GP that understands blood test results for thyroid is a scandal as so many remain under or untreated.
Here in Crete we can walk in off the street and choose our tests and have the results within 2 days nicely typed up for us to keep. OK it's private but affordable We have a Guest House and a Studio so maybe cheaper to have it done here !!
Hey, no problem, Marz. I belong to 3 different forums and I have terrible trouble remembering who is on what forum, or where I've read things. Your testing on Crete sounds fab - I'm jealous. I find it quite gruelling to always be badgering my doctor for testing. To be honest I think it's a bit of a cheek that we have to. When something goes wrong, especially quite seriously wrong, I feel they should test everything and show some kind of interest in why you got sick. After all, just fixing you up with drugs isn't much of a fix in my book, but it's the sad norm. This means if you have any interest in curing yourself whatsoever you have to take charge and that's when you have to start badgering your doctor. It's a pain in the arse, but it's either that or sit and wallow in your decline!
You could have the Thyroid Tests done privately - through Thyroid UK main website - there are a couple of companies mentioned - Blue Horizon and Genova Diagnostics. You will receive a discount. At least you will get exactly what you want.
Also for in depth coeliac testing Cyrex labs in the States had good ones - these are now done by Regenerus Labs in the UK.
Money well spent for piece of mind.....
We do keep our own records here in Crete - which in a way makes us feel as if we are taking responsibility for our health.... I like to think all Docs here are descendants of Hippocrates - sadly not....
I have nerve issues but now you mention it,since going f/f I don't think I've had any trigeminal electric shocks,still get a feeling along the line of the nerve into the ear but no sudden pain.
Hi Beaton, yeah I've had - whisper it - great results with B12 so far, despite my doctor being insultingly sceptical about it. That said, he has gone along with me, despite my B12 only being in the 'grey zone'. I did have to have a few fights with him (and prepare a huge dossier to convince him) but I got loading shots and am now on monthly injections which, so far, seem to be making some impression, so fingers crossed.
Were you ever actually diagnosed with trigeminal neuralgia, or treated with anti-convulsants?
I have a lot of the same gastro symptoms as you. It can still be coeliac without diarhea or weight loss, some people can have few or no symptoms. I know 2 people who have had neg blood tests and then had positive biopsies. The blood tests can be neg if you have IgA deficiency, which they should test for when testing for C, but my NHS Trust don't do it! I'm going to push to have an endoscopy which perhaps is a good idea for you too, but you need to keep eating gluten for the test to be accurate. There's quite a lot of good info on the Coeliac UK website.
Hypothyroidism can cause those symptoms too. My TSH is at the top of the range which means I'm probably hypo but have gone undiagnosed for years. Get a print out of any blood tests you've had in recent years.
Hi Winegum, yeah, I've considered my thyroid a few times, but like I say up above, I was tested several years ago and apparently passed, so I dropped it. Afterwards I was diagnosed with gallstones so any other problems kind of got pushed aside while I was dealing with the gallbladder problems.
I'm really concerned with getting to the bottom of why I've developed neurological problems as it makes no sense to me. My grandmother died of Alzheimers so it's very much pressing to me. I don't want to go down the same horrific route.
My husband developed TM whilst on holiday last year and was in desperate agony. He described the pain as worse than childbirth! Whilst he was raging and moaning, I did some research and came up with a possible link with B12 deficiency, so I bought some 1,000 mcgs tablets of Methylcobalamin and dosed him with some fairly hefty doses to see if it helped until he was able to get back home, see his doctor and in the meantime try and salvage the holiday. Thankfully the pain disappeared almost overnight and he stayed on a maintenance dose until we returned home ten days later. I also bought some Hypericum tincture which may have contributed to soothing the pain too.
On our return from holiday, my husband saw his doctor who did further tests and pronounced the B12 levels to be completely normal and the "cure" to be the placebo effect! The TM twinges come back from time to time, and so he takes a B12 which sorts it out immediately. Placebo or not, it seems to work.
Hi Sally, your husband was spot on with the 'worse than childbirth' comment. I've had two attacks of biliary colic, which is described as 'the worst pain known to man', and worse than childbirth and it DEFINITELY is, but after the attack is over it is at least over; the TN pain is just constant, zinging you in more and more and more ways at random moments. After a while the sheer unrelenting terror of wondering when it is going to strike next really wears you down. Still, it's a toss up as to which of he two I'd pick for worst pain!
I'm already having treatment for B12 deficiency and, so far, fingers crossed, that does actually appear to be making a difference. As I said up above, I'm trying to get to the bottom of these neurological issues so that they don't get worse and I wondered if gluten sensitivity issues led to B12 problems which led to the TN. I'm afraid I'm one of those people that just HAS to know the reason why for everything!
Has your husband ever actually been diagnosed with Trigeminal Neuralgia and given medication for it?
Chancery I forgot to mention that as I am on a gluten free diet, my husband, by default, rarely eats anything with gluten either when we are at home. Whilst on holiday, he chose his own food, ate food with gluten and could possibly have triggered the onset of T.N. I doubt if we will ever know for sure but he mostly keeps to a gluten free diet now just in case.
He has not had Trigeminal Neuralgia diagnosed officially nor been given medication for it as it was just the one really bad attack and his diagnosis came really from elimination of all other possible causes by us (and the dentist) and the doctor would not give a diagnosis based on the one episode.
I hope that you manage to find all the answers that you are looking for. It does seem very likely that gluten is implicated and it is wonderful that you are responding to B12 treatment. I do wonder why so many people seem to be gluten intolerant nowadays.
Hi Sally, that IS interesting that he'd been hitting the gluten again before the attack - although you would think it might be a bit fast, since TN is a demyelination problem and I assume that couldn't happen in days?! But you never know...
I sincerely hope that your husband stays free of the disease and escapes a reoccurrence. He really does not want to have to take anti-convulsants. They are the spawn of Satan. Probably all that gluten-free clean-living is saving him. Remind him of that if he ever moans, and tell him I said he is a very lucky man to have you keeping him straight and free of their horrible clutches!
It is possible to get false negative blood test for coeliac disease either for lack of another blood factor whose name i forget or because you have not been eating enough gluten in the weeks before the test.
Either way you should have a look at the coeliac uk website for neutral up to date advice, or phone their help line, and note that coeliac disease can develop at any time of life so try to getanother test in case the condition has developed since the last test.
Dont start the diet until you have been diagnosed, or it will be very difficult to geta diagnosis.
Hi Gill, yep, I've added the test onto my list of things to badger my poor doctor with. It's the only way I'll have something concrete to go on - no point in conjecturing. Thanks for the help.
I have trigeminal neuralgia. My neurologist said he thinks I have an underlying cause.. I do have a blood vessel that is very close to the nerve however it is not touching it. My family doctor is also at a loss on what is causing the miss firing of my nerves. Many years ago I started getting really bad diarrhea and pain that felt like labour pains (yes that drastic) my doctor at the time didn't know why. I noticed it was after I ate McDonald's or this packaged noodle soup that it would get so bad so I stopped eating processed foods .. even tho it got better it didn't go away. It would even happen after eating too much soya sauce. I started to think it was sodium intake (my doctor at the time said no it couldn't be) I was tested for celiac and it was negative (at the time I didn't know what that was or didn't even look it up) my friend told me to try and cut out wheat she had read a book about it. I thought that was foolish but it got so bad I would try anything so instead of completely taking wheat out I only ate brown instead of white bread and pasta. I got better it barley happened anymore fast forward a couple years I started to have hormone issues and was diagnosed with TN at the time I was 26ish. How could I be so young and have these many issues. Something was wrong with me and no one could give me answers. I did a DNA test with a site called "23 and me " my results came back the other day and said I have the celiac disease gene and I'm high risk. Now that I have read about Celiac disease I now think I have had it for many years and that was my underlying cause this whole time. White bread has a substantial amount of gluten. So does brown obviously but I think switching only helped my symptoms not be so bad. When I would drink lots of alcohol with gluten I would puke so bad I would get so bad of pains I thought to myself that I swore I was allergic to it. (Sounded silly I never told anyone I thought that ) I get joint pain and numbness in my hands.. one time it was so bad I went to the hospital and the doctor told me I had raynods disease. I'm gonna make an appointment with my doctor. See what she thinks. But I feel like My TN is a result of untreated celiac disease or gluten issues generally.
Hi Kb, your symptoms certainly sound like undiagnosed coeliac disease. You can get false negatives to blood tests, so I would certainly ask to have them redone if I was you. Also, if you suffer from IgA deficiency (as I do, coincidentally) you are more likely to have coeliac disease, but it also gives false negatives with the testing they do and you have to have a different test. I used to know the names of these but I've forgotten them! Lots of GPs don't know about the IgA deficiency (mines didn't) so it's important to ask them to test it before they test for coeliac again. And, of course, it's important to keep eating wheat through all this, otherwise you will get a false negative. Good luck!
Thanks for the reply. I am seeing my family doctor tomorrow to get her opinion on what I found. And now that I have read about celiac I'm more informed and agree that I have undiagnosed celiac disease. I'm no doctor though I have been on a no gluten diet for a few days now haha so good to know about staying on gluten till testing is over. But I hope I don't get an episode as a result :s
Yeah, it's one of sufferers biggest bugbears, having to keep eating gluten for a diagnosis, but it's worth it. Without that diagnosis you'll never know, and it also encourages you to backslide! With the diagnosis you know it can kill you if you eat any wheat - it's good motivation to stay on the straight and narrow!
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Sorry I did not realise we had met before ! I would try to have the testing done I have detailed in the earlier post and ensure you obtain copies of your results ( your legal right ) - with ranges - and pop them onto a new post on Thyroid UK HU. So many people there ready to help and support. Finding a GP that understands blood test results for thyroid is a scandal as so many remain under or untreated.
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