Is Gluten Sensitivity causing your Fi... - Fibromyalgia Acti...

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Is Gluten Sensitivity causing your Fibro?

Chancery
Chancery

Hi, I wondered if anyone has ever suspected NCGS (Non-Coeliac Gluten Sensitivity) as the cause, or as A cause, of their Fibro. Mine has flared up recently, after I've been on a much healthier diet than I have in years, and I'm baffled by this. Why would I get sorer and tireder while IMPROVING my diet? The only thing I could think of as having changed was I am now eating much more (whole) wheat. When I'm eating junk it tends to be sweeties & ice cream, neither of which contain wheat, so I'm wondering if there is a potential relationship. I do have IBS and fibre can be a bit irritant, but I wouldn't say wheat, per se, makes my IBS worse, although it does seem to contribute to runny guts!

Have any of you ever tried a gluten-free diet? Did it help? Did it cure you? (I wish...) Or have any of you read any good research suggesting gluten/ wheat might be a problem in Fibro? Any info or feedback most welcome. Thanks!

P.S. I did read somewhere, although can't remember where now, that NCGS is one of the suspects in fibromyalgia, so I assume there is some research which suggests it could be a/the culprit. I know that in NCGS, proteins from the wheat get into the bloodstream and cause inflammation, so it's not such a stretch that it could be causing or contributing to fibro.

68 Replies
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Totally agree. I was diagnosed with CFS and fibro but think the CFS was gluten intolerance as that's totally gone now. Not all my pain has gone but I don't fit the fibromyalgia symptoms even thought that's what I'm told I have. I think I have chronic lyme disease, but don't have a diagnosis.

Chancery
Chancery in reply to lb003

Yes, I was diagnosed with fibro very quickly, and kind of half-assedly, by a rheumatologist in August, but I also have a diagnosis (I think! He really wasn't clear) of MCAS (Mast Cell Activation Syndrome) and I wondered, with the two things occurring together, that it might be a wheat issue. For years I suspected I had coeliac disease, because it fit so well, but tests always came back negative.

Hazel_Angelstar
Hazel_AngelstarAdministrator

I am wheat intolerant, so follow a mainly gluten free diet .... It helps with my ibs symptoms but does nothing for my fibro, and my fibro was triggered by childbirth so not a cause for me

That's a shame, Hazel, but good that it at least helps with the IBS. Fibro' really is a very difficult thing to pin down. It would be great if they could just make one breakthrough with what's causing it, but I suppose it's a major step forward that they just accept it exists!

Hi, I tried gluten free for a few of weeks to see if it would help..... Never again!! It actually made my stomach much worse and it took me a few months to get back to any regularity with a lot of unpleasant additional symptoms.

Saw a nutritionist after a couple of years and she was so helpful. Wheat only once a day (sourdough if bread), more nuts and seeds, more fruit and veg (7-10portions),live yoghurt /kefir daily, more legumes (I'm vegetarian), apple cider vinegar......

I'm definitely not trying gf again.

Chancery
Chancery in reply to moo196

Odd you should mention sourdough, Moo. I find that I prefer that to any other bread. It seems to agree with me better. Were you eating GF bread? I ask because there is a lot of crap in some of those loaves! (And they taste more like cake!)

moo196
moo196 in reply to Chancery

Some bread but used gf pasta, gf cereal and avoided anything else with wheat in eg sauces, biscuits etc

Hi I have been thru all the pain meds over the past 10 yrs and as people say they dont take away the pain they just mask it for an hour or so and make me lethargic an drowsy at the same time but 1 thing I find helps which no doc or specialist ever advised me on was my diet I done a lot of research and found diet plays a huge role in our chronic pain and illnesses so I started to be self aware of what I ate each day I wrote everything down that I thru in my body fluids foods supplements vitamins an prescription meds and after a while I started to notice all the different things I was consuming had a different effect on my body and mind and eventually I realised what things effected me an made my symptoms worse it’s a long discovery but I’m getting there by eliminating what I’ve found triggers my symptoms the most and it’s quite surprising what foods and drinks effect us because I can honestly say after a month of a certain elimination ( including wheat pasta rice pastry sugar salt caffeine lots etc even some veggies and fruits ) it works it just takes a lot of discipline tho being strict with our intake but it’s been the main thing that’s helped me this last year than all the pain meds in the 9 years before I wonder if anyone else has had any experience doing this eliminating of certain foods that trigger our symptoms just thought I’d share my experience food for thought so to speak it’s actually surprising how our foods effect our bodies and our mind... have a little research on it when you are on good day maybe worth your time but basically I answer yes to yr question good luck an best wishes I hope you find something that can help🙂

Chancery
Chancery in reply to StarLight75

Yes, elimination diets can be really great, but they are time-consuming and can be difficult - the modern world is wheat-dependent! I did Intuitive Eating for almost a year (it's to try and help with eating disorders & obsessive dieting) and I found that really helpful for the same reason: it helped me work out what I REALLY liked and what agreed with me and disagreed with me, but I've never been sure about wheat. I sense that my body doesn't love it, but I never get clear-cut symptoms that say definitely 'Yeah, you and wheat should get a divorce.'

Sorry I say yes as in wheat gluten can trigger My symptoms NOT a cause of fibro but then again who knows coz the docs don’t no no one seems to know what is a cause but I’ve deffo learnt what triggers My symptoms 🙂

Chancery
Chancery in reply to StarLight75

That's interesting, thanks, StarLight!

I have a sensitivity to Gluten, but not full Coeliac disease.

I think it is mainly due to the Industrialised breadmaking system, known as the Chorleywood Process, as I have found more trouble from that kind of bread than any other. Artisan breads give me less trouble, and if they are Sourdough based, no trouble at all. I can also manage Brioche with little or no trouble, probably due to the amount of butter used in it.

Oats give me problems, as does wheat, barley and Rye, so I have to avoid foods which use them. cakes, pies, pastries, breaded products, pasta..

Nowadays if I want a pasta dish, I use Rice noodles, and I thicken Sauces with Cornflour.

For cereal, I eat either Corn Flakes (which are Maize ) or a Rice cereal, suitably tarted up with fruit.

I also have a problem with things in the Pepper family, strangely not the dried spices, but the fruits themselves, Peppers, Chillies, Aubergines, although I seem OK with Tomatoes and smallish servings of potatoes.

I have no problems with Dairy, but a boiled egg can give me a problem with the sulphur in the yolk. Scrambled are fine.

I have always had a problem with Fruit drinks you have to dilute, due to the amounts of Sulphites in them, also when I used to make my own wine, the sulphites in them made me wheezy, so I have to allow them to breather for a while before drinking.

I took a Coeliac test last year, which was inconclusive, but the Phlebotomist told me it would be, as I was already avoiding gluten.

None of this in my case has any bearing on my Fibro, but it has eased the IBS.

Hope this might give a few clues to help.

Cheers, Midori

Chancery
Chancery in reply to Midori

Thanks, Midori, you and I have a lot in common. I have big problems with the pepper family, but the opposite way round - I can eat fresh, but not the dried variety. Paprika is like detonating a bomb inside me! And they all make me flush like mad. But likewise, I can eat tomatoes & potatoes with no problems at all. Oats et al can give me bad reflux, but otherwise I haven't ever had anything definitive with any of them. I can't drink wine at all, it makes me downright ill, and all alcohol makes me flush bright red and gives me reflux so I just don't bother any more. I have IgA deficiency, which is present in most coeliacs, so I have a strong indicator for it, but no test has ever been positive for me, unfortunately. I'd rather have something clear-cut, even if it meant giving up wheat forever!

I know quite a few people whom gluten-free helped. I did it for 2 months and it didn't... But I'm still sticking to some of it...

Ive had ibs for over 20 years and found eliminating different things helps. I am ill and in pain every time i eat bread and various other gluten foods and yet test came back negative for coeliac. Dr said im not doubting that gluten makes you ill, so a major sensitivity i dont know?

Since ive had lots of pain and episodes with major ear, neck, teeth, jaw pain. This went on for years. Eventually after an agonising 3 weeks in lockdown in April taking painkillers non stop going to emergency dentists/doctors they said i have trigeminal neuralgia (fibro) This all sems to have lead up to the fibro thing food sensitivity, gluten etc. Has to be all linked. Good luck wit it all :)

bookish
bookish in reply to erasurefan

Hi, I've read that trigeminal neuralgia can be associated with gluten related disorders and often improves with truly GF diet. I agree - more links than we realise. Best wishes to you

Chancery
Chancery in reply to erasurefan

How weird, Erasure, I have TN. I've had it for several years now. Recently, I've had terrible problems with my teeth on the other side, but it isn't 'electric shock' pain so whether it is TN or not, I don't know. Unfortunately lockdown has made dentists almost inaccessible, plus I have dental phobia, so I've been trying various things, like steroid spray, which gave me a bad allergic reaction, so not making much progress. There is some minor mentions around that TN could be a symptom of (advanced) coeliac/NCGS, but unfortunately it's a rather rare condition so not a lot of research there, but coeliac definitely causes neuropathies, so it's possible.

Hello there, good to see you my friend. I think for me it was probably a cause rather than the cause, but can't be certain. My Fibro symptoms started quite young (puberty) and I suspect that my gluten (and dairy) issues were from birth. So I have surmised that they were the triggers for the underlying genetics predisposing me to Fibro. I may be wrong! COMT (neurotransmitter and oestrogen imbalances) and inflammatory cytokines have been suggested as possible causes of/contributors to Fibro and I have SNPs on both. COMT is Catechol-O-methyltransferase and poor function will impact your methylation - another common SNP. You need good methylation to break down histamine. The other thing with histamine is that with poor gut function you may struggle. I found the following

" Interestingly enough, since starting on this MCAS journey I have met about a dozen or so other women who have both celiac disease and MCAS. Many of us have found that our MCAS/histamine symptoms seem to spiral out of control after getting accidentally "glutened." DAO, the enzyme in our bodies that breaks down histamine, is produced in our digestive systems, so it does make sense that the gut damage we experience from gluten may lead to a decrease in DAO (and hence, our bodies getting overwhelmed with histamine that cannot be broken down). My gut instinct (no pun intended) is that many of us with celiac disease and non celiac gluten sensitivity have MCAS going on to some degree."

(DAO isn't the only thing working on your histamine, nor is gut or villi damage restricted only to those with Coeliac).

Might turn out that my dubious oestrogen processing is behind the Fibro and it certainly causes a bunch of symptoms. Hormones also impact histamine. Fortunately magnesium speeds up my slow COMT enzyme function, and helps to improve histamine levels/lower mast cell response as well as balancing the oestrogen better.

This is about NCGS and Fibro

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

Histamine is complicated and there is some thought that imbalances between it and other neurotransmitters (which should be thyroid-regulated) might be causing some widespread issues. In case you want to delve chronicfatiguediagnosis.com...

I don't think the Fibro has significantly improved with my totally grain free diet, but lots of other things have. I did have increased symptoms when I first tried GF as I was eating (only quite moderate amounts) bought GF with potato/corn/rice flours, and found that I couldn't tolerate those either. Made me wonder if it was a lectin issue. Lectins can raise histamine reactions too, potentially. Bit on lectins here

greenmedinfo.com/sites/defa...

Still working on it all, but not giving in just yet!

Look after yourself x

Chancery
Chancery in reply to bookish

Wassup, Girlfriend! Lovely to hear from you. That is a terrific article on the NCGS - thanks for the link. Going to reread it and have a look on PubMed to see if there are more. I think a wheat-free diet might be worth a shot. It is the only thing that's changed in my improved diet, otherwise I'm eating what I always eat, so I definitely think it's worth looking into.

I think I did mention to you last time we spoke that I was (sort of, I think) diagnosed with MCAS. Believe it or not, I am STILL waiting for the doctor's report to be sent to my GP. That's since 5th August! Until then I don't know what he actually formally diagnosed me with. I've been taking antihistamines (Cetirizine) to deal with a bad allergic reaction to a nasal steroid spray. I had to put up with a doc at my practice doing verbal eye-rolling on the phone (she was sighing and being tetchy) because I was trying to get help with facial pain and the allergic reaction. She all but tutted when I asked for antihistamines and told me to buy my own! This is partly why I could do with a formal diagnosis. MCAS is badly enough understood without having to put up with docs disapproving of me. I always run into a lot of bad-tempered dismissals from docs because I react to meds all the time. It's as if I'm doing it to personally upset them. I always have to run the gamut of 'you're wrong' (she told me that antibiotics don't cause tendonitis - this because I got tendonitis from Ciprofloxacin. When I asserted it had, she said it must have been Carbamazepine. I took Carbamazepine for over a year - I know the difference between antibiotics and anticonvulsants.) They always behave as if I am drama queening and I must be overreacting. I also got told how strange it was that I got 'steroid rosacea' from a nasal spray - like I don't know that. It's rare, I get it, that's why the rheumatologist diagnosed me with MCAS. Anyone would think I love being anxious all the time about reactions and that I'm afraid to take most drugs now - and that there is nothing more enjoyable than trying to impress upon docs that waking up with a huge, round, burning red face and puffy lips is not drama queening, it's an allergic reaction and I didn't have it to pique you. The nasal spray really helped so it made it especially galling to have to stop using it; to then be tutted at for that was just the icing on a miserable cake.

Sorry for this venting; didn't know that was going to come out! Sometimes (frequently!) I hate doctors, but you I love. Thanks again for the link. Going to have a good rummage on Pubmed.

P.S. Haven't read the Lectin one yet, but definitely going to have a good read of that later.

bookish
bookish in reply to Chancery

Hi there, I get you (as usual!!). Sometimes I just don't want to go near a doctor ever again, and yet I try to be fair, because I have met a few genuinely kind caring people who have tried, just not got the time or the training, and the system isn't set up to keep us healthy, more to stick us back together. Why the daft woman said antibiotics can't cause tendonitis is beyond me, as clearly they can and do. I have avoided the meds reactions conversations by not taking anything, as the blank looks are more than I can handle, and trying to explain just how ill the MRI made me feel would/should/could have been funny....I think she thought I was mad. You are right to wait...and wait....for the letter, because you can't be sure that he will even mention the MCAS, but you really need some help with it. Just feels like we go round in circles, not knowing what is causing what.

Glad you liked the link. I found this about Fibro, which briefly mentions mast cells and neuroinflammation which you might like to see fmperplex.com/2019/12/30/fi...

Does make sense to ditch the wheat and whatever other grains cause you problems. Could well be undiagnosed coeliac, or NCGS but also worth thinking about the lectins, blood sugar effects or even pesticides.

You probably found this page about other people who've had steroid nasal spray rosacea, but just in case, here it is rosacea-support.org/rynacro....

I upped my quercetin to 3 a day, to try to keep it all under better control, as back, hips and rib cage all more painful and it does seem to be helping. Reluctant to do it full time, so will stick to times when hormones are changing, or weather, and histamine therefore higher so potentially also higher tryptase.

Vent as much as you need to! Love you too xx

Chancery
Chancery in reply to bookish

That's another great article, Bookish, thanks once more. I was struck, reading it, how like trigeminal neuralgia is sounds. They don't know what causes that either, whether it's compression by a vein (some people have this, but others don't; I'm a don't) or whether it's damage to the myelin sheath, like in MS, or whether it's just over-stimulation of the nervous system/pain receptors. Whatever, the end result - the body 'sensing' pain when it's not called for - is incredibly similar. Makes you wonder if me getting TN first was somehow symptomatic.

And I hadn't seen the Rosacea page, thanks for that I found 'steroid rosacea' on Google. Getting it with nasal sprays doesn't seem common, and the only mention of it I could find was on a New Zealand dermatological page, but I had had it before, in 2018, but from proper steroids, in tablet form. That was much worse though, probably because I finished the course of tablets, whereas with the spray I stopped the day after I was sure that was what was happening. Probably just as well, as on the second day my lips had puffed up too and I couldn't talk properly!

And Quercetin - I saw that listed yesterday as a natural antihistamine. Would you recommend that? I've been taking cetirizine to make sure this 'rosacea' doesn't do what it did the first time around and give me rashes for a full year (yep, it did, that's why I got my rheumatologist's appointment - for all the good it's done me so far...). I find that antihistamines are causing a couple of problems - the usual one of tiredness. Although these modern ones are suppose to not cause drowsiness, they bloody do. I feel tired all day, but worse in the mornings (I take my tab at night). But they also seem to have increased my pain. Possibly because my fibro plays up a lot if I'm tired or don't get enough sleep, so it could be as simple as that. But I've also noticed I'm a bit down with them, although that could be a side effect of the pain and tiredness - they don't exactly make you cheerful. So would you recommend I tried quercetin? Would it be better, do you think from your experience, than taking AH's? What dose would you recommend, if so?

Lastly, and maybe most important of all - tell me all about the MRI? Do you mean the MRI as in the big white machine you lie in while it bangs away and gives you claustrophobia? (Had mine for my TN, when I first got it, hence me knowing I don't have a vein compression.) Or is it an abbreviation for me showing my ignorance a new way? If it's the machine, then I am fascinated. Fascinated, I tell you. Reveal all.......

bookish
bookish in reply to Chancery

Good morning - glad it was interesting!

Quercetin now - I started taking this to help calm an obvious histamine overload at New Year 2018, along with olive oil (eaten and on skin), parsley, Vit C, and regular magnesium use (along with easing off high histamine and histamine releasing foods). I believe it is actually a mast cell stabiliser so even better than just an antihistamine, but there can be issues. Micki Rose of Pure Health Clinic (purehealthclinic.co.uk/trul...) says (1) don't use if having parasite treatment, until finished, (2) be wary if you have a legume or lectin sensitivity, (3) possibly could stimulate immunity and some consider it should be avoided if you have autoimmune issues, although we have few options for this rather important function.

The piece that is in her list of 'believed clean at the time of investigation (grain free etc)' is here

'Vitamin C is nature's anti-histamine so see Vitamin C section above – must be cassava! Otherwise, quercetin is also very effective. However, it used to come from apple or strawberry but is now from a legume plant Saphora japonica so is not totally suitable for Barrier Planners – although sometimes I feel the benefits outweigh the

lectin possible problems. Most quercetins come with other stuff. Here are my simplest ones:

Lamberts Quercetin

Oxford Vitality Quercetin

Butterbur can act as an antihistamine. NOW Foods have confirmed theirs contains corn so is NOT TGF safe, I am investigating others.'

I use Lamberts which is a 500mg. When things were 'just' the odd high histamine day, one taken at sign of flare was usually enough, but I find that my reactions are more frequent and since I found the connections to cartilage issues have been taking two, or even three as needed. My possible costochondritis is less painful when I do. I still find the magnesium essential alongside. For anti-inflammatory purposes, Micki suggests 600-1000mg max per day for 3 months, then 300mg daily if you need it longer term, so I am trying to keep it down, whilst balancing quite how bad I feel without it. Limiting the diet for too long (low histamine) doesn't seem like the best idea, as we need the range of fibres to keep the gut happy and the microbiome as wide as possible, so I try to balance olive oil, vit C, magnesium, quercetin and stress relief so I can eat a good healthy mix (now manage oranges and walnuts but haven't yet been brave enough to try an avocado! If I don't try to bulk cook and avoid leftovers it generally works ok).

I only ever needed antihistamines once growing up, in my A level year, and they just knocked me out. I suspect now that it wasn't an odd one-off hay fever thing, but a reaction to the large, flat roof that was being re-bitumened at school. I have considerable issues with petroleum products now. I did try them again for skin and allergy type symptoms 5 or 6 years ago, but didn't get on well, and decided it was the corn starch and other fillers, hence the super clean quercetin. They work for me, quite miraculously, but may not for you, so take it slow please!

This is long, sorry. MRI - yes big white box. Never had one before, this was a short one on a foot, no contrast, no expectation of issues (except claustrophobia - but it was just a foot...). Problem was I felt like I couldn't hold still - when I came out the operators were very nice and said I had been completely still, but I felt like someone had fastened me directly to an industrial pneumatic drill and couldn't stop shaking. Heart, chest pain, the most appalling headache, nausea, joint pain....and it lasted for a few weeks, reducing but not going. Now I find that vibration and noise, which I found horrendous, can be mast cell triggers and also that in particular metals can be moved (they use low level magnetic therapy to shift toxins and metals in some clinics I gather but they do it slowly and with binders), so maybe as I know I haven't been functioning well in that area (and have a metal hypersensitivity) ... two possible explanations. Certainly not keen to have another.

Talk soon xx

Chancery
Chancery in reply to bookish

Thanks for the info on Quercetin. That's all good and gives me a great starting reference point. I'll have a look on Amazon tonight and try some. I have some experience of your bitumen issue - when I was a kid the smell of petrol used to give me headaches. But I don't know if it still does - don't have a car! It used to contribute to my travel sickness as a child. And I don't know if it's related, but my skin doesn't love Vaseline and petroleum by-products. They tend to make me itchy and hyper-responsive about the skin area. It prefers lanolin, but it's surprisingly difficult to find that in skin creams. It's all plant fats nowadays.

And I was fascinated to read about your MRI experience. How strange was that? I was in a full body one and it was very claustrophobic, mostly becasue of the loud banging and the fact I was in for 45 minutes, I beleive it was. They have to do 'thin-slicing' for the brain. But I do have an issue with vibrations for my TN. When I had it full strength, shocks all day long, I could be triggered by bus vibrations or putting my foot down too hard, like coming down steps or 'falling' off a kerb. Don't get that now, fortunately.

I do have a metal 'sensitivity' but only connected with electricity, so maybe it's really an electricity sensitivity! Ever since I was a small child metal in my mouth used to set my teeth off. Ironic, as my TN felt exactly like that when I first got it - I remember telling my doc then that it felt like when you put your tongue on a metal pencil sharpener (that makes my mouth water and my teeth wince just writing it!). But I've had an electrical sensitivity since forever. Always getting shocks, used to fuse lightbulbs all the time till I was about 30. Doesn't happen now, except in shops where I still get shocked on a regular basis. Couple of places I've lived I would walk directly under an electric pylon (in Aberdeen I literally had to go under a huge one, humming above, and it always felt as if it was pulling my teeth out my head and would make my brain feel fried. It was always a strong, drawing, achy feeling. But I might not be unique in that!

Lastly, can I just say I admire you for the thoroughness of the work you do on your health. I don't know how you cope - and keep a track of - all the different things you try and do, and how you keep a handle on all the conditions you are struggling with defeats me. I think I'm doing well if I remember to take my Vit D each day and stick to a healthy diet! So kudos to you. I should think you must be running the gauntlet of docs accusing you of being a hypochondriac, so comprehensive is your regimen for all the onslaughts you are having to contend with. It takes guts to stick to your guns and take care of yourself like that; I salute you.

bookish
bookish in reply to Chancery

You are lovely, what a kind and cheering thing to say. I often feel like I have no clue and am missing the plot entirely, but am determined to keep trying! I can get a bit stroppy - red hair in the family may be to blame. I have only once felt it necessary to say to a GP that I don't believe that I am either idiot or hypochondriac and she looked a bit shocked and assured me that she wasn't thinking either - although she was acting like she was. The most recent is ok so far - probably actually getting a Neuro who found something tangible has helped.

Very interested in your electricity/metal issues. Reading that about the metal pencil sharpener has made my teeth hurt. Do you have a mouth full of fillings too, or has this been with you all along with good teeth? I used to make watches go wrong and always seemed to get more shocks from cars and supermarket shelving etc. Last summer I did get the most peculiar feeling walking under a row of humming pylons, somewhere I'd been before but hadn't had the same reaction. That fried brain, drawing, pulling does sound a bit like the MRI. I'm glad you don't have so many vibration issues now.

I used to use petroleum cleaners for work and can't go near them now - I wonder if using them a lot was one of my 'triggers'. I used to get a rash with Vicks as a kid and also avoid vaseline. Interesting that you get on well with lanolin, as it is sometimes an irritant, but used in baby creams etc and clearly good for keeping in moisture. Now I'm using so much olive oil I seldom need anything on my skin, but slop a bit of coconut oil on once in a while if dry. Generally only need it if I haven't washed fruit well enough and lips split on contact with chemicals on skins. I try to remember to wash them well!

Cheers x

Chancery
Chancery in reply to bookish

Oh God, yes, FAR too many fillings, and root canals now. But interestingly my TN runs between two teeth - the front one, is filled, but it's a small white filling, no metal involved and the molar it runs to in the back is also filled, deeper than it was when TN first struck. Like most people who get TN, we all think it's a tooth issue and go get dental work done. I was very lucky not to have it root-canalled. Fortunately I felt that something was off, Googled my symptoms and went back to the dentist and asked her just to refill it rather than root-canal it, and then it turned out I was right - TN, not a dental problem. But I remember loads of people on the TN forums who had had several teeth pulled or root-canalled trying to fix what was a neurological issue. SO glad I didn't do that.

However, the downside of TN (like it needs more!) is that when you then get pain in your teeth, as I now have on the other side of my face (had it since Nov' last year), you are VERY unsure whether you are seeing a dental problem or not. It makes everything so much more confusing, and as someone with a bad dental phobia, I can spend months of my life, as I have recently, in a constant state of anxiety. As you can imagine, that doesn't do my health any good. You have no idea how much I wish I hadn't been raised on a bad Scottish diet of sugar-in-everything as a child. I haven't actually lost any teeth as an adult. I lost them all when I was a child - a combination of said diet and a dentist who wasn't careful enough about removing teeth (I had several taken out as a child as a 'preventative' measure becasue my mouth was "overcrowded"). Unfortunately I grew up when some barbaric dentistry was the norm - hence the phobia!

bookish
bookish in reply to Chancery

Hi there. I'm really glad that you realised and didn't have more root canals. They do seem to cause issues. I'm lucky in that I have avoided those, but do have masses of metal. Most from childhood, like you, dodgy diet although now I suspect gluten/lectin weakening contributed. The dentist that took my wisdoms out wrecked the teeth next to them too, so big fillings and crumbling teeth. They got infected and I'd not long had EBV so wonder about trapped infection. Not something I can afford to do anything about either way. The TN sounds horrendous anyway but having that extra unsureness on top of understandable phobia is, as you say, not going to do you any good anxiety-wise. Take it gently x

Hi,

I have Coeliac Disease but it went undiagnosed in my life till I was in my 40’s. I had had the symptoms on and off from childhood but no 🇬🇧GP would take my symptoms seriously (I wasn’t even tested). I was told it would be IBS. I was fobbed off. Finally I was found to have Full Blown Coeliac Disease (aka as bad as it could get).

Anyway in the mean time, in my 30’s, I had developed symptoms of Sjogrens Syndrome and Fibromyalgia (which I’m convinced btw could be one in the same condition 🤷🏼‍♀️). So I live with all three conditions.

So I would say yes there is a connection to Gluten (which is found in Wheat, Barely, and Rye).

Btw it might be worth trying to get your doctor to have you tested for Coeliac Disease, but if you are in UK it is typically very difficult to be tested correctly or taken seriously, and I’d advise that you look on the Coeliac UK website for info, good luck.

Sadly however, all this said, medical science hasn’t joined the dots yet, though like you I think some low level studies are being done.

🙂

Chancery
Chancery in reply to Magkin

Oh Magkin, you poor thing. I don't know how you could resist punching a few people, or at least suing them. That would have made me FURIOUS. I have had coeliac testing, when I was in my 50's, so a good 7 or 8 years ago now, but it was always negative. I have partial IgA deficiency, which you probably know often goes hand-in-hand with coeliac disease, and I had to fight like the devil to get an IGg (I think?) test instead, but it was negative too when I eventually got one. I have read that you can develop coeliac disease, and it's not a given that just because you have been tested previously as negative you shouldn't be tested again, later down the line. So maybe I should contemplate fighting that fight again, just in case.

And I know exactly what you mean about Sjogren's. I've thought I had it loads of times because I have so many of the symptoms, but I think they do autoimmune testing for that? And I've never had any autoimmune markers. I DO have the intensely itchy eyes though, all the damn time. Only time I'm free-ish of it is when I take antihistamines, but AH's bring problems of their own, like being exhausted and sorer(er) all the time as I am just now. If I didn't know better, I'd say AH's were making me more painful, though why that would be I cannot imagine.

bookish
bookish in reply to Chancery

Me again! You may still have Sjogren's. Testing is about as useful as a chocolate teapot, like Coeliac. If, a big if, you get positive testing, everyone knows what is going on. But many don't, ever, get antibodies. With Sjogren's, some get them later, some don't. Those with neurological symptoms often get those before the more expected dry eyes and mouth, so don't even get tested. Bloods and eye and dental can all be clear, even salivary biopsy. Can't be ruled out just from negative testing, need proper history and symptoms and a good doc! x

Chancery
Chancery in reply to bookish

Oh say not so - I hope not. I would say I should be okay as the rheumatologist did bloods and they would have, assumably, been testing for autoimmune markers, so I'm hoping it's not the case, but as you say, the tests are far from foolproof so, sadly, you can never say never. However, in other news - and be ready for another vent - I actually GOT my rheumatologists 'diagnosis' from the docs today. Only took two months to arrive, after I chased it, and I can tell you, it wasn't worth it.

Turns out, not a problem for the MCAS - he diagnosed me with "probably" having that. However, what IS missing is a diagnosis of fibro. I couldn't beleive it. I didn't bring fibro up, nor did the doc who referred me, it was the rheumy's diagnosis. He handed me a leaflet and started talking about it and I interrupted him to ask him outright "Do you think I have this?" and he nodded and said yes and wrote down the name of the medicine I should try. Now, on his diagnosis, no mention of it, no medicine recommendations. His entire 'diagnosis' was as follows: "Mechanical low back pain. Probable mast cell activation syndrome. High ferritin - likely related to fatty liver disease." That was it, total. Not another word, other than an inaccurate past medical history.

Now, he didn't check my liver, that was done months before, and when I asked the radiologist she said I didn't have it. She said my liver showed "some brightness" but it "could be anything", but he's just pulled that out and slapped it on me. With the mechanical back pain, they did a back X-ray but it's not included and he doesn't say what they found. I ASSUME it found there was nothing abnormal, which is fine, BUT I have pain form top to bottom of my back, so I always find this 'mechanical low back pain' thing annoying. Also, it doesn't account for sore legs and feet and sometimes arms, i.e. aching all over.

So, in short, I no longer have fibro, but whether that's because he forgot he diagnosed me with it or he changed his mind, I do not know. I'm going to write to him this weekend and pin him down - ask him if he forgot he'd diagnosed me with it or if something in the bloods or back X-ray made him change his mind. I might also ask him to confirm that antihistamines and stabilizers are the treatment of choice for MCAS so that I can get help from my docs, if I want it.

I can tell you, after waiting 11 months to see him, having to chase this 'report' up to get it, and it taking more than 2 months to arrive, to be dismissed in 3 lines and have NO diagnosis of fibro at the end of it - WELL pissed off. I can see why people go mad and go on shooting sprees!

bookish
bookish in reply to Chancery

Well pissed off seems eminently reasonable - I'm so sorry! All that wait and then this. I am glad that he does at least mention the MCAS so you have a good excuse to write for confirmation about treatment which hopefully will stop the GP eye-rolling, virtual or otherwise. And with luck a mast cell stabiliser will help your back if any of it is due to cartilage. Odd that he has forgotten or ditched the Fibro as they seem so keen to pin all odd pain to that. I did once have a GP who simply said 'you don't have Fibro' but that wasn't what I was there for so I didn't think to ask him whether he didn't believe that it exists at all (there are some, I gather), or whether it was because he believed that there was an underlying issue (Small Fibre perhaps). He went off sick and left shortly after, so never got chance to find out. Could be that you have SFN, not Fibro and that the Sjogren's like symptoms are down to SFN too. MCAS or mast cell dysfunction common with SFN and Dysautonomia. That is pretty much where I think I fit. The liver issues, fatty or not, might be due to the hypothyroidism as some say there is a correlation. We need a functioning liver for good thyroid function but also need thyroid hormones for a functioning liver - bummer.

Happy letter writing and pinning-down - look forward to hearing what he says (eventually!) xx

Chancery
Chancery in reply to bookish

Yeah, did him a 2 page letter, with barely restrained sarcasm, asking him to clarify whether I have fibro' or not and asking for an outline of meds for MCAS (although I already know these, in all honesty. It's basically antihistamines. (In the US they get stabilisers. Here, the only stabiliser is in eye drops!!). I also asked him for a copy of the X-ray report and the blood tests. I did that just to make him work - I don't imagine they will reveal much, unless, of course, he is utterly inept and he's missed something on them. As I went around with raised ferritin for a year and no doctor even picked up on it, I suppose I shouldn't be surprised if he did miss something. After all, he forgot he'd diagnosed me with fibro', so anything's possible. And they tell us docs work hard to qualify, and that it's a calling. I think this one just stopped working after he qualified - obviously no calling involved. Me, bitter?

bookish
bookish in reply to Chancery

The 'barely restrained sarcasm' made me smile. We try to walk such a fine line, and then I wonder if they even read what we put. I tried to have this 'how do you go about putting the record straight when they've got your history all wrong and said lots that is completely stupid' conversation with a GP and she was clueless. The consultant is God and they couldn't have made mistakes of any import. She was wrong and so have they been, on more than one occasion, as with you. It is tedious. I am sure some of them start out with good intent but the calling seems to be status and pay more than care all too soon, for some.

Don't forget the trusty Vit C is a stabiliser, as well as my useful quercetin (I eat lots of watercress too which is high quercetin). If I'm getting histamine-y I eat parsley too. Here is a page to give you more ideas! mastcell360.com/debunking-m... and here's another healinghistamine.com/natura.... I was interested, re-reading the latter, to see that milk thistle prevents histamine release as well as inflammatory cytokines (which I am vulnerable to genetically). I've been taking it in a supplement for a while now but had not remembered that extra benefit.

Hang in there xx

Chancery
Chancery in reply to bookish

Oh yeah, I'm much more assertive in writing than I am in person. It's a female failing, but not without cause. I belong to an online dating site and the one consistent thing men say they don't want is "assertiveness", like it was a character flaw on a par with tattoos, which is their second most loathed female 'trait'. That tells you what the world thinks of assertive women.

Thanks for the tip about watercress. I've got into the habit of sticking some green salad leaves on top of as many meals as I can; I will now make that leaf watercress, which I fortunately like. I'm getting myself some Quercetin but I'll be skipping Vit C as it gives me a terrible runny gut and it's not very stable as it is, presently. I want to be able to leave the toilet occasionally. And thanks a bunch, as ever, for the links. If I can use natural methods to control my trigger-happy immune system then so much the better.

I'm just about to try a course of antibiotics (boo, hiss!) to see if the pain in my face/teeth might be an infection. Really don't want to do it, but I need to try different things to try and get to the bottom of it before I have to resort to yet another root canal. I've got my kefir and probiotics in to take immediately after, but not looking forward to it at all. I feel my poor gut never really gets a chance to heal before I'm forcing some other atrocity upon it.

bookish
bookish in reply to Chancery

We wouldn't b...y well need to be assertive if people would behave like humans. What a weird thing for men to dislike. How pathetic to only want people around them that will accept whatever is their whim. Can't we be equals or partners in any real way. Not like we are talking serial killer aggressive here, just 'fair'.

I can't say I'd ever eaten watercress prior to histamine issue but I'm rather partial to it too. It was spinach that tipped me over the edge, so never gone near that again! Chicory leaves are good too, especially red ones, but don't have many places nearby to get those. I can only eat a little bit at once, but makes a change.

Shame about the antibiotics, but you do need to know - and at least you are prepared and can offset some of the damage.

Take care and talk soon x

Chancery
Chancery in reply to bookish

Yeah, it makes you wonder if they are all on the dating site (and divorced) because they expect women to be some kind of unpaid moral support and obliging toy. And I absolutely love the idea that spinach "tipped you over the edge". I now have visions of you going on some mad rampage all puffed up, red and reactive, like a super-angry Hulk!

bookish
bookish in reply to Chancery

That made me laugh out loud and I'm still grinning! You have no idea how close you are - puffed up, red, reactive, itchy, hot and cold, shaky and pacing around the (small, very full of books so no space for a full- on rampage) living room, as walking is supposed to help use up your histamine, whilst slathering myself with olive oil! Sounds a bit more Popeye now...New Year 2018 was an interesting night!

(As a divorced woman I couldn't possibly comment........xx)

Chancery
Chancery in reply to bookish

Now that's a New Year I'd like to have been at. Not just for the good company & conversation, but so I could have paced the room with you and maybe done some slathering just so I could have the anecdote of talking (and walking) someone down off the ledge due to an excess of spinach.

P.S. I'm 'divorced' too, but am also assertive bordering on aggressive so have NO problem commenting on men and their self-serving relationship 'needs'. That's probably why I'm divorced....

bookish
bookish in reply to Chancery

And that would have been much more fun!! We could have sat on the sofa once you'd talked me down, like three wise monkeys. I wasn't doing much talking, just whingeing as my mouth went numb and lips burned. It was scary, even though I knew pretty quickly what it was and what I'd done wrong, so I have endless sympathy for those who have it badly or real allergic reactions to cope with.

I struggle to comment because I was told on getting married that my first priority was to my husband and his family and I should never criticise him publicly. Which kind of sums up how things went for the next 25 years, with me unable to do anything right for anyone, pulled between his family and mine, and being stuck permanently (still?) in fight or flight. Eventually I flit, but still dealing with the aftermath. I wish that someone had known me well enough to tell me he wasn't the right one for me, but I was a rather young 18 and more vulnerable than I realised. It could have been very much worse, but it wasn't good. Over the years I have suffered far more often at the hands of women than men (all girl school - pupils and teachers, mostly female workplaces and some appalling bullying managers/supervisors, even though I was much better at dealing with them by then) but often didn't have the wherewithal to deal with those completely shitty men who came my way. Many, unsurprisingly, doctors and consultants, who do seem to have their 'relationship needs'. I am lucky to have the man I love by my side. xx

Chancery
Chancery in reply to bookish

You are indeed. I think I'm rather more of the 'not sure I want one at my side - across the room would be better. Or another room entirely preferably' mindset currently, and I've ben like for 3 years now. Maybe when I'm 70 I'll feel like venturing into those waters again. I find it very contradictory that I suffer quite badly with loneliness yet feel very antipathical (right word?) about taking on another man. Mind you, in the time of Covid what are the chances of me getting the option!

So the rheumatologist phoned me today about my letter. Didn't apologise or anything but talked me through it and it turns out he doesn't think I have fibro. Instead he thinks I have MCAS (he only said "probable" because in order to be certain you have to do tests he can't do) and he brought up the fibro because MCAS produces "fibro-like-symptoms" according to some expert who he gave me the links to. So, it's official, I do not have fibro, but I do very likely have MCAS. I had a look at said expert's symptom list and with the exception of the heart issues some folks get, I have about 75%+ of them, so bully for me! Turns out my half-assed docs only gave me part of his diagnosis - this despite me asking the receptionist to double-check it was only one page. But there was also a letter, apparently, which I didn't get.

I asked him for a copy of that plus copies of blood tests & X-ray results. I still think he was a mumbling twerp but I actually agree with his diagnosis, so at least I'm happy on that score. He also told me I could have asked for a copy of the results and letter to be sent to me. Would have been helpful if he's told me that there. He says he gave me the fibro leaflet because there is no MCAS leaflet so that would give some idea of how to deal with my fibro symptoms. I don't know if I want to try his recommended Duloxetine. On my good days I do NOT want another drug. On my bad days, like they've been recently for some utterly inexplicable reason, I think 'I need to try SOMETHING just so I can get off this sofa.'

In positive news, I bought a small batch of what I assume are low-ish Quercetin tablets to try (500mg) based purely on the fact they're made from onion powder and onions and I don't get on, particularly, ironically, in powdered form. I can eat a small red onion in a big pot of stew, but if I have dried or powdered onion in a ready-meal it does for me. So I thought start small and low and that way I won't have wasted too much money if they don't work. If they are okay I'll get better dosing going.

The Americans seem to be SO much better off for meds for MCAS. They have stabilisers available and all manner of other things to try. Us, we've got antihistamines. I requested some Loratadine recently, for two reasons. One, becasue I felt very pissed off at the doc I spoke to who told me I couldn't have an antihistamine nasal spray and who told me to buy my own AHs and 2) because I find Cetirizine makes me really tired for most of the day (and sore). I went to pick them up today and was told they didn't have the prescription, so I called in at my docs on the way home and they have no record of it. I'm HOPING it just got lost in the dark world of the internet, but if I find out that the same doc blocked it - heads will roll. I've struggled for years with this undiagnosed MCAS and to be told that the only measly meds I can get for it I'm not getting becasue she has a bee in her bonnet about med costs, or whatever it is that's annoying her? Nope, not standing for that.

Incidentally, I was thinking about this today and for years - I mean a good five or more - I was saying to docs 'I react to everything' and giving them lists of symptoms including flushing and rashes and a disordered gut and nary a one of them EVER picked up on it. I was literally saying to them, and I actually used this expression, 'it's as if my body is attacking itself. It overreacts to everything.' I kept asking for autoimmune testing and it would keep coming up blank but I was just told I was the 'worried well' and sent off. That's just wrong. You'd think ONE of them might have heard of MCAS, or wondered why a woman who didn't have an autoimmune issue had so many clone autoimmune issues. You'd think they might pick up a book occasionally.

Oops, this looks suspiciously like another vent....

bookish
bookish in reply to Chancery

Morning chum! Yes I think everyone should pick up a book occasionally, then we might be able to make a living! (I might vent too, so shall stop there.)

I am sorry about the loneliness thing. I know having you and other nice people to talk to makes me less lonely and less conscious of the lack of more 'present' friendship. Sometimes you need people who get where you are and where you've been and I get that more on here. Having a man/partner/flatshare doesn't necessarily make you less lonely as I know you are more than aware. I was often desperately lonely with my ex. I hope that somewhere on that dating site, when/if you feel like it, there will be a man who actually doesn't give a damn about tattoos or anything else irrelevant, and definitely likes women who can think, care, act, be assertive and aggressive when needed and that he is honest, considerate and good company.

I'm impressed that the Rheum actually phoned you - less so with idiot doctors for not giving you half his report. I'd be interested in the MCAS specialist's link if that is possible. Didn't realise symptoms could be so similar. Incredibly depressing that you had been explaining so clearly for so long and no-one picked up on it. I've mentioned that I've been having histamine issues to 3 GPs, 2 Rheums and a Neuro so far with no interest, but shall persevere now I know more.

My quercetin are legume of some kind but also 500 mg which I think is normal. Dosage seems to be 4-600mg one to three times daily. I started with half one, once daily. Higher doses some say aren't a good idea long term, so I'm trying to reduce mine. At the moment I take 500mg with everything else, at breakfast, then another half tablet at lunch and evening meal, unless I feel like things are more itchy, tingly, hypersensitive, when I'll have a whole one. One place I read said you need to take them regularly, before you have a reaction (for allergies, I guess) implying that they wouldn't work once you were having a reaction - that has not been my experience. If it gets bad, extra quercetin and a good squirt of magnesium help a lot. Anyway, I hope the onion isn't a problem and they help you.

Best of luck with the Loratadine and the stroppy GP xx

Chancery
Chancery in reply to bookish

I'd forgotten you write! Do you ever do creative writing (I think you said you did academic writing work, is that right?), or ever want to do it? I often think if I could get back to doing creative writing it might help give me a purpose. Or maybe not...

Here's the link for said expert: drtaniadempsey.com/mastcell...

I suspect I was given this particular rheumy becasue he attended a convention wherein she spoke on MCAS last year. Lucky old me...

bookish
bookish in reply to Chancery

Oh how I wish I could claim anything so skilled! No, just a small secondhand bookseller with an addiction for the printed page (and a very full house!). Tried writing many years ago and soon found that loving reading didn't mean you could write. So many stunning authors and lyrical passages to make you weep. If I could cope with the smell of paint, I'd go back to that for a creative purpose, but I adore the smell of watercolour paints and don't want to find that it too makes me ill, so would rather not risk it until I can get things under better control. My dad's neighbour has been doing some creative writing and it has given him a real outlet and shown a new talent - so go for it!

Thank you for the link, some good stuff there, and some symptoms I hadn't associated. Bit surprised that she says that mast cells should test as mildly to moderately increased in number as the Dyasautonomia International people say they are commonly normal, as can be blood tests. dysautonomiainternational.o.... This is such a new area there are bound to be changes and varying opinions to confuse us more and make diagnosis even more tricky.

Incidentally, are you worse just now? The very high winds here yesterday, overnight and today seem to be correlating to new/increased hip and low back pain as well as more swollen joints. I have noticed a wind reaction before although generally more noticeably histamine. Histamine currently feels higher, but not really high. May be coincidence, but shall keep an eye on it xx

Chancery
Chancery in reply to bookish

Ah, sorry, I've mixed your career up with someone else's! I think maybe because you are articulate and have a bit of a way with words. I was a writer for most of my life. A spectacularly unsuccessful one. I would love to do one successful novel before I died, just to know what it felt like, or at least to communicate to more than a handful of people.

Yes, it is odd she said that, since the whole essence of MCAS is that it doesn't have mast cell irregularity. If it does, it's Mastocytosis - they have more than normal mast cells. MCAS sufferers just have the same old mast cells but they are all going bonkers.

And funny you should ask about being worse, because I was for the last week or two, yet today I could reach round behind myself without (undue) pain for the first time in forever. I also wasn't QUITE as out of breath as I normally am climbing the hill today (I live on a steep hill, so I have to climb one every day, effectively - the irony). I just generally felt better, except for my gut and appetite which has been atrocious for months. I'm hoping it's 'long Covid' and will eventually go away, otherwise I might fade away (I wish!). But no, I actually felt a bit better today other than being right off my food, and I thoroughly enjoyed a wild walk down to the shops in stormy Halloween weather.

So have you taken a turn for the worse? Perhaps we're on some horrible Gemini twin cycle - I feel a little better, you get worse. If you suddenly start feeling poorly around food when I say my appetite is a bit better we will KNOW there is something fishy going on; our psychic connection is strong, little one....

bookish
bookish in reply to Chancery

You say the nicest things. I do hope you achieve your dream - I'd like to read it!

We are like the people in a weather house....but I am glad that you've been a bit better when you've been having such a rough time. We too are on a hill although possibly not so steep. Does give us a nice view over the valley to hills the other side.

As I climbed it this morning, huffing and puffing, I was thinking of you and the irony was not lost. My hips/back eased a bit yesterday afternoon/early evening (the wind dropped) then had a poor night and all back with a vengeance this morning - pain, nausea, headache - and wind is tempestuous.

No sign of my appetite going yet, so keep me posted on your progress xx

Chancery
Chancery in reply to bookish

Where in the country are you, Bookish? I can't remember if you said. (Think I'm getting dementia on top of everything else!) I live on Corstorphine Hill in Edinburgh. I'm at the bottom of it really and have to climb halfway up it to catch a bus, or worse, I have to climb halfway up it to then go down it again to get to my big Tesco's. Shouldn't moan - probably stops me seizing up entirely.

bookish
bookish in reply to Chancery

That does sound nice and I'm sure it helps keep you moving although I wouldn't stand a chance. Sometimes I can barely manage our drive! Rossendale in Lancashire is home, been in Lancs for nearly 24 years.

Chancery
Chancery in reply to bookish

Ah, I know Rossendale. I lived in Manchester for 7 years and it was one of the places we looked with a view to buying a house there. All the little towns and villages around there are really cute. I still have some of the photos from estate agents of houses we really liked. We ended up in Morecambe, which I also liked but we only lasted 6 months because our neighbours were so awful and the town had worse crime rates than Manchester, which we were trying to escape, so that was a pointless endeavour.

Okay, I'll leave you in peace now. I've got medical overload. I'm 100% sure that illness wouldn't be nearly so gruelling if we didn't have to go through the - now Covid-mad - NHS. Doctors seem to make everything so complicated and difficult - bless them. See? Sure sign I need to back off and ignore doctoring and illness for a while. Take good care of yourself and stay well. XX

bookish
bookish in reply to Chancery

There are some nice bits but a lot of it is really struggling. You take care too. Sending good vibes for the writing and some appetite improvement XX

bookish
bookish in reply to Magkin

Hi. Sorry that you're having such a rough time. Symptoms of Sjogren's and Fibro vary so much between individuals I don't, personally, think that they are one and the same. That said, many with Sjogren's have Small Fibre Neuropathy, and some believe that SFN is the cause of Fibro for at least a proportion (possibly 50%) of sufferers. Epstein Barr Virus is also linked to Sjogren's, Fibro and Coeliac as well as some other autoimmune conditions. There is a lot that we don't yet know, I agree. Grain free has certainly made a big difference to me. I tested clear for Coeliac, but was already off gluten. (I have SFN and Fibro, possibly Sjogren's, and had EBV). Best wishes

Thanks so much for replying and to Bookish and yourself for all the information etc. You think its just you that has all these weird symptons etc and then i see other people writing what ive been experiencing for years. I have a complete lactose allergy (go into anaphalaxis) which ive had for about 20 years too, gluten thing an issue these days and convinced that menopause and hormones have made it worse too. The how to improve it part is the hard bit. I can barely eat anything these days without being ill, pretty well in constant pain with the TM which becomes unbearable as you will know with a flare up. So difficult to live with. But hey life goes on and its got to improve with something, im striving to find that thing. Sending hugs guys xx

Chancery
Chancery in reply to erasurefan

I know exactly what you mean, Erasure, about finding people who are going through the same thing. For literal years I had all these aches & pains and allergic reactions and I kept telling my then doc that it just felt wrong, that I shouldn't be this sore and tired, not to mention weird problems like not being able to wake up and go to sleep at the same time as the rest of the world, which I found very shaming because I thought I was just lazy, or depressed. He told me I was the 'worried well' and should stop going on the internet - like I did it for fun. When I was given my fibro' diagnosis recently, which I wasn't happy about (I wanted to hear that it was something more 'legitimate'), and I read the symptoms I thought 'Thank God, it's a real thing' so there was relief as well as depression (and anger). And I really feel for you with the food thing. I've struggled horribly with food and gut issues over the years (since my teens) - there's nothing worse than having problems with what other people do wIthout thinking.

Hi, I've been intolerant to wheat, and then Lactose, for more than 10yrs now and had to stop eating any wheat whatsoever. It's amazing how many bought foods have wheat in them! It got steadily worse, though I could cope with oats & barley but gradually, I could no longer eat Gluten in any form. My fibromyalgia has developed within that period so no, eating Gluten wasn't the cause, because I don't! I wish it were that simple, well, don't we all?!

Chancery
Chancery in reply to PurpleRoni

Yeah, Roni, it seems to be quite common for coeliacs to also have, or later develop, lactose intolerance, so there's obviously a relationship there. They say it might be to do with the proteins in both being hard to break down, or them both getting into the bloodstream from a damaged gut wall. I don't believe I have lactose intolerance, but I do know that if I have lactose free products, or drink A2 milk, that my gut is happier, so obviously it doesn't love lactose either! I know in the link to the study Bookish gave me above, some people were 'cured' of fibro from a gluten-free diet (they lost all their pain). But others weren't. It is possible that fibro is a multi-causal issue and for some people gluten is causing it. Of course, it's also possible that these poor souls had been diagnosed with fibro when they really had coeliac disease or NCGS!

Hidden
Hidden

Very interested I'm being tested cos of bowles and stools x

Chancery
Chancery in reply to Hidden

Sincerely hope you get a nice clear-cut result, Lola. Best of luck!

Hidden
Hidden

Thank u I've noticed since fibro my stools have changed as I now have ibs so I'm doing a fecal sample so hopefully will get some answers also mucas blood on stool I notice white bread and mushrooms and oats are a massive no for me there's just so much with fibromyalgia u get over one hurdle then another one gets chucked at ya I'm so good and juming over hurdles I should be a sheep 😜😁👍

Chancery
Chancery in reply to Hidden

Baaaaa humbug, eh?

Not sure if this helps but I have coeliac disease and was recently diagnosed with fibromyalgia also. As I am completely strictly gluten free, I can’t say that has relieved my fibromyalgia symptoms at all. I spoke with dietitian and he mentioned about a link between sugar and fibromyalgia. I have noticed if I eat a lot of sugary foods the next day my symptoms are worse. So I try to limit how much sugary foods I ingest. I’m not sure if that will help you but might be worth I try :)

Chancery
Chancery in reply to Poppy96

Thanks, Poppy, that's hugely helpful. If someone with coeliac isn't finding it makes a difference to fibro that suggests it's not necessarily a causative agent. Can I ask how long you've known you were a coeliac and how long you've been on a gluten-free diet? Just wondering if you've been gluten-free long enough for it not to have influenced your fibro or done damage, as in if you're 45 and only been gluten-free for 5 years then perhaps it could have done irreversible damage? (Sorry, that's not very cheerful!)

Poppy96
Poppy96 in reply to Chancery

Hi, I am 24 years old and have had coeliac disease for nearly 5 years now, been strictly gluten free about a month after formal diagnosis through an endoscopy. I am very strict as I hate feeling anymore ill, so I avoid eating out etc. I was diagnosed properly with fibromyalgia this February. So my proper fibromyalgia diagnosis came after coeliac (but I think I have had fibro for at least 10 years prior). I thought once I found out I was coeliac that would be the cure to the symptoms unfortunately that just wasn’t the case. Now nearly 5 years on, on a gluten free diet I can say it hasn’t helped in terms of the fibromyalgia symptoms :/. A lot of the symptoms can cross over with coeliac ones, however my mum is also coeliac and my sister so both houses that I tend to eat at are strictly gluten free also, so the symptoms that cross over must be that from the fibromyalgia. I hope that makes sense a bit :)

Chancery
Chancery in reply to Poppy96

Thanks, Poppy - that's really interesting. I imagine it's possible, given your family history, that you've all been coeliacs since birth so I'm wondering if you might find an improvement over time in the fibro' symptoms. I don't know how long your sis and mum went before being diagnosed, but in your case you had 19 years of the disease untreated. I'm wondering if it might have been enough to give you all your (or some of your) fibro' symptoms. Here's hoping, regardless, that it does get better for you over the years, whatever the cause. X

Hi Chancery

I have been under hospital for many of my medical conditions.

Not only do i have ME, Fibro but i also have Pyloric Stenosis ( narrowing top & bottom of stomach) so need endoscopic dilatations often but also have Colitis, underactive thyroid, type 2 diabetes, high cholesterol, GORD and GERD.

I have had absolutely loads of procedures and tests under gastro and am also under a dietician as all these conditions deal with diet.

My diet is so limited that the dietician actually said she has never seen anybody with such a restricted diet.

I have to say in answer to you that my very limited diet has absolutely no effect on my ME and Fibro.

I had to cut out all nice tasting food 😔😔so i live on chicken, yoghurt, bananas, lettuce, cucumber, Ben & Jerrys ice cream and soya & gluten free products, no caffeine, spices, herbs and many more, sugar & dairy included.

The dietician told me it takes 3 days to clear something that upsets your stomach completely.

I had to do an extensive food diary and it took months.

That is not to say that food intolerances will/will not make any difference to anybody else.

What i am trying to say is that every symptom you get with fibro may not be due to food.

I had to go on THE FODMAP DIET so GOOGLE it if you feel that your diet is not helping your fibro but please don't expect miracles.

Everybody is different, so you can only do what is best for you and your body.

Good luck and health to you all and keep well 😊

Chancery
Chancery in reply to MALC19

You poor thing, MALC - that's an awful lot of things to have to deal with. I really feel for you. I've never heard of Pyloric Stenosis. Can you tell me what symptoms you had for that? How did it present itself - were you having problems eating?

MALC19
MALC19 in reply to Chancery

Hi Chancery

I have got used to all these conditions now. I did get a lot of help from NHSand i try not to think about them.

My body loves to throw me curve balls at least twice a year 😂😂

Sp Pyloric stenosis is narrowing at top and bottom of stomach and is quite rare in adults, more common in newborns.

It is caused by scar tissue apparently.

It was diagnosed only when they did tests for diagnosing my colitis.

They did an endoscopy and colonoscopy and discovered it when they could not get their tubes into my stomach and intestines.

They said its usually due to stomach ulcers or hiatus hernias but i had none of these.

So the symptoms i get is no appetite, nausea, and food gets stuck in my oesophagus. This is going to sound gross, sorry, the food begins to congeal in my oesophagus and i throw it up in the end and its shaped like a long sausage.

We have a valve at bottom of gullet that opens and closes when we swallow to allow food into the stomach, my valve does not close and is narrowed due to scar tissue holding it open. The stomach acids come up my oesophagus and into my mouth and burns all the way up.

The pylorus allows food to enter your intestines and pass through.

I have the same narrowing here which gives me terrible stomach pains and i can go anything between 7 to 10 days without opening my bowels.

When i do eventually go i do not stop for the next 3 or 4 days and that is where the colitis comes in.

When it gets really bad i go into day surgery to have a endoscopic dilation. They pass a camera and a balloon down my throat and inflate the balloon to push the scar tissue out of the way. They can only do it very gently, bit by bit though.

I hope i have managed to explain this ok.

That is one of the reasons i try to stay happy and cheerful, otherwise i would forever be crying.

There is always a solution to everything, so i have a lot of faith and belief in the NHS, without them i don't know where i would be.

I have a lot of medical conditions and have had quite a few operations but i have to do my part too when it comes to my diet. I have to eat soft foods in tiny portions as i do not want to be tube fed as that would really get me down.

I should write a book really😂😂

That is why i know from having many tests and procedures done that i know my diet does not cause my fibro.

Everybody is different though.

Take good care and stay well 😊

Chancery
Chancery in reply to MALC19

That sounds like a horrible condition, Malc - I deeply admire you for getting through that day to day and still staying upbeat. If it was me I'd be feeling terribly sorry for myself. People like yourself always make me see my own problems in perspective. Very best of luck to you with your health. You deserve a break.

MALC19
MALC19 in reply to Chancery

I did go through a stage where i was fed up with it all but my mum always told me to stay strong.... she is no longer here so i write to her in a journal which really helps, as i feel like i am still sharing it with her...yes i do have a huge amount of medical issues but CBT helped me to see it all in a different perspective.

I wish i did not have medical conditions but i have to say that having ME and fibro are the hardest to deal with as they are invisible, people don't understand unless they really know you, and Doctors can be unkind, and there is no cure for them.

We all have a lot of issues to deal with and i see people worse off than myself.

My Mums words are what i do every day despite how much pain i am in.

Good health to you too and keep well 😊😊

Chancery
Chancery in reply to MALC19

You are absolutely right. I have trigeminal neuralgia, which is an invisible condition, and people don't get it - even some doctors. That's where these forums come into their own; the people on here all know what it's like to struggle on their own, even when friends and relatives have the best intentions they don't always grasp how difficult things can be. This place is a lifesaver!

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