Having observed many posts on this forum I am aware that I have not seen many references to diet and the food we eat. Hippocrates said - Let food be thy medicine and medicine be thy food. From my studies all illness stems from the gut. Whenever I ask about gut health on this forum - no answer is the stern reply Inflammation which starts in the gut can affect so much of the body including the brain.
The Vagus nerve leaves the brain through the brain stem and directly connects to the gut - and vice versa. The brain gut connection. Messages are going to and fro all the time. So what causes inflammation in the gut ? - it is GLUTEN. How many of you are on a gluten free diet ? The gluten we eat today is not the gluten we ate in the 50's or what our parents and grandparents ate. It has been hybridized to such an extent that our bodies do NOT recognise it. Wheat today is resistant to pests/drought etc. as the food industry cannot afford to lose out with a failed crop. Check out what is sprayed onto crops ! Wheat is cheap to produce and is used in places that even Heineken cannot reach The food industry is as corrupt as the Pharmaceutical Industry.....
When our guts sense the gluten - it sets up a reaction which can damage the gut wall - all 26 feet - and molecules can escape. The blood system then detects these molecules as aliens and anti-bodies are created. This is the beginning of auto-immune disease. There are 89 different auto-immune diseases throughout the world and affecting more and more people every year. We all know someone with IBS - which is just that - a syndrome - or Colitis - and I myself have Crohns - and so it goes on ....
I recently watched an on-line conference - The Gluten Summit - A Grain of Truth - 29 experts from around the world talking about gluten and its effects on the body. You do not have to be a Coeliac - you can just be gluten sensitive.
So what is the purpose of my post ? - why not try giving up gluten for a month and see how you all feel. I have spent over 40 years seeking answers - and having Crohns diagnosed over 40 years ago - I am aware of gut health which has helped my journey. As a refinement give up the Nightshades - tomatoes - potatoes - aubergines - peppers - et al - releasing them from your diet will help the aches and pains.....
Finally - check out your VitD with a blood test and do not accept NORMAL from your GP unless it is at the TOP of the range. Ask for copies and keep them so you can track you wellbeing .....the test is D3(OH-25)
Please ask any questions you may have..........
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Marz
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I am not sure about a gluten free diet but I like to keep an open mind. After months of problems I was diagnosed with a vit D deficiency, my score was 17. I think in the future we will see an epidemic concerning this. People think it is just a shortfall in your diet but it can cause numerous problems. Rickets are on the increase. Children are very vulnerable because we never let there skin be exposed to the sun just cover them in sun cream. The trouble is there has been so much spoken about skin cancer we have gone too far the other way. The further north in the UK you are the more at risk you are. I know bread has gluten, what else?
Yes you are correct about the VitD.. Hubby and I have lived in Crete for the past 10 years and our tests showed we are insufficient. Low VitD is evident in so many illnesses. The book by Michael Holick - The vitamin D Solution - is very revealing. Skin cancer in Oz has increased at the same rate as the sales of Sun Preps - from the 70's onwards. We must expose our skin daily without suncream to have the maximum benefits. It is the UVB rays that permeate the skin layers and then work with cholesterol to form VitD.....and so you find another link ! Taking Statins blocks the production of cholesterol in the liver and in turn blocks the production of VitD. Millions of people take statins - YIKES. Our brains are made up of cholesterol and 80% plus is made in the body - nothing to do with food - and so we NEED it !
If you want to learn more about the gluten and its negative effects - check out the following books - Grain Brain by David Perlmutter - and...... - Why isn't My Brain Working ? - by Datis Kharrazian. check them out on-line. I have read the latter book ! 600 pages of interesting stuff...........
You are correct that many people with Fibro have a low Vit D as do I. i would suggest any member who is wondering about their levels to speak to the doctor about checking it for you. It is advisable not to take supplements of any kind without consulting your GP.
Sunshine does help with Vitamin D but so do some foods, interestingly enough since we have been using cooking oils and not lard, it was researched that people are missing this out in their diet when it very high in Vit D.
Can I go back to safety in the sun? I was advised by Professor Davies team to have 5mins on each side in the garden without sun protection and then to use sunscreen. I would consider the other risks from sunshine too and use sun tan lotion to prevent skin cancer.
That sounds like common sense to me - again if people do their own research they will find out for themselves about safe tanning - if they don't already know. It may be worth considering adding to your advice on the VitD test that you mentioned - a test for Calcium and Adjusted Calcium as VitD increases the production of Calcium. Excess Calcium in itself could be a problem....so I have learnt from others.
Best to use an organic sun cream - lots of nasties in most sun preps - and the skin is our biggest organ - so in it goes - more toxins for the body to cope with
May I ask why it is not advisable to take VitD without a doctors consultation ?
Thanks for your reply, yes I would hope people do use common sense in the sun. I am sure they do.
I would always suggest considering discussing supplements with your GP as some medications have interactions with Vit D supplements and some conditions they may advise not to take them;
Cautions when taking vitamin D supplements
Care is needed with vitamin D supplements in certain situations:
*If you are taking certain other medicines: digoxin (for an irregular heartbeat - atrial fibrillation) or thiazide diuretics such as bendroflumethiazide (commonly used to treat high blood pressure). In this situation, avoid high doses of vitamin D, and digoxin will need monitoring more closely.
*If you have other medical conditions: kidney stones, some types of kidney disease, liver disease or hormonal disease. Specialist advice may be needed.
*Vitamin D should not be taken by people who have high calcium levels or certain types of cancer.
*You may need more than the usual dose if taking certain medicines which interfere with vitamin D. These include: carbamazepine, phenytoin, primidone, barbiturates and some medicines for the treatment of HIV infection. (Patient.co.uk)
Sorry didn't answer your gluten question ! Anything made with wheat/barley/rye and so on contains gluten - all the grains. It's also hidden in products as wheat is cheap and bulks out products or thickens them....can even be in your medicines as part of the filler ! Some people are also sensitive to oats. There is a Gluten Free forum on HealthUnlocked - Gluten Free Guerillas ! Love the name....am sure they will have loads of good information....
I think you're spot on! I have had trouble with my stomach and bowels for years. Colonoscopy and barium enema showed nothing so it was IBS said the docs. Fibromyalgia followed as did hypothyroidism, small fibre neuropathy and acid reflux. Then along came persistent thrush and lichen planus. Next was urticaria and such an itchy head that I wanted to shave my head to get to
the itchy scalp. Dermatologist thinks it may be dermatitis herpetaformis which is caused by coeliac disease!! I've had a scalp biopsy and am waiting for the results and GP has told me to do nothing until the results come through. If I'm not coeliac then I'm gluten sensitive as I can't eat gluten in a morning otherwise I'm really ill. Sorry to go on, but I often feel that gluten is the missing piece of my health jigsaw.
Listen to your body - handle it with care - step inside it with your mind - and then you're almost there.........one of my yoga mantras
I bet it's gluten sensitivity ! IBS is just that - a syndrome - how are your Iron levels ? They need to be high for a healthy gut.....if you want to know more please ask me ? I live in Crete and we are two hours ahead - so am off to bed !! Thank you for your reply..........
Re-reading your post this morning - I am wondering if some of your symptoms are connected to your thyroid. Do you have Hashimotos ? As that is auto-immune it could be the cause of other things going wrong. Have you had your thyroid anti-bodies tested ? Also it could be you are not being optimally treated for the thyroid. Do you have copies of your most recent blood tests ? Did they test the FT3 ?
Acid Reflux is often associated with a lowered metabolism - as the food is not digesting well due to LOW acid secretions into the stomach. It can remain in the stomach too long causing the undigested food to be troubling. The lowered metabolism affects every cell in our body - including the cells in the stomach lining.
The Gluten test is not extensive enough and many people are missed. From the on-line summit I learnt that the tests done by Functional Medicine Practitioners are more extensive. So even if your test is Negative I would still consider going gluten free....
With so many things to cope with it must be very debilitating. Oh by the way I used to have a very itchy scalp - now that I am on better treatment for my thyroid it has gone. Do hope you will soon have some answers.....
Just a quick update. Went to the Pain Clinic on Wednesday and the Specialist Nurse advised me to go gluten free immediately and not wait for my scalp biopsy result! I am to let her know my biopsy results next week but to stay GF until February and then report back to her on my pain levels. Today is the first time in a week that I've not had a headache! It's a learning curve but I've tried everything else so here goes! Thank you for your advice x
What good advice and it sounds as if it is one you are comfortable with too - onwards and upwards. Good about the headaches - they often associate gluten as a trigger with migraines etc...so fingers crossed. You can feel a little poorly after a few days as the body releases irritants - just hang in there !
Managed to get results from dermatology for my biopsies which show my symptoms are not dermatologically caused? My notes are to be put forward for a weekly meetingthat is held by pathologists and dermatologists to discuss my case and see if they can come up with any answers. On the meantime I'm. still ffollowing GF. Xx
Thank for letting me know. Hopefully something good will come out of the meeting. It may be you need your thyroid treatment tweaking a little - when did you have your last test and what were the results. I used to scratch my itchy bits on my scalp until they bled - can no longer find them ! Hope you are feeling stronger with the GF eating.
There is a problem with the meeting they will be holding - where are the Endocrinologists and the Gastroenterologists - the Neurologists ? - They all need to be there doing dot to dot on your case and the many symptoms you are presenting with and mentioned in an earlier post.. It is one of the problems with Medicine today - they do not get together but keep their individual specialities to themselves. All the individual symptoms are treated and the underlying causes neglected.
However they may just come up with something but I am putting money on your thyroid not being optimally treated ! Did you have your VitD tested ? You mentioned you have B12 injections - which should help the conversion of your T4 to T3. You also need optimal gut health for the T4 to convert into T3. It is the T3 that is the only ACTIVE thyroid hormone and is required in trillions and trillions of cells in our body. High doses of VitD are suggested for Crohns so it could well work on IBS. It is anti-inflammatory as well as being a steroidal pre-hormone - so has a very vital role in many systems within the body - and who knows may help those itchy bits
Am off to the UK on Wednesday so will be out of action until I hit base a week today. visiting children, grandchildren and friends en route to the far west !
TSH is 0.1 and ft4 is 18. I agree that all the health professionals should get togethether but that ain't going to happen under NHS! Vit D is good too. Enjoy your trip.
Folic acid was below range and I was advised by gp to supplement with OTC products. B12 is top of range as I have injections. Will check the other results and get back to you.
Morning Marz may I ask your qualifications that you are so apparently well informed? We have generally touched on diet but leave it for the site that is totaly used to cover all aspects. However, this site does as most do lite upon areas that affect fybronimtes particularly as when people request it. I ask about your back ground as we need to know from where you knowledge comes. You say you do not have a doctorate what do you have?
I think in one of my posts I did say that I was diagnosed with Fibro over 14 years ago....followed by the Hashimotos diagnosis in 2005. I also have Crohns - diagnosed 40 years ago. My knowledge comes from over 40 years of reading and learning to heal myself. Also the Thyroid UK HealthUnlocked forum has over 12,000 members many of whom are extremely knowledgeable - with very well researched information. I have been on that forum for two years and learnt a great deal. You can read my posts there if you need to learn more about me ....
I am also a yoga teacher and so my passion for anatomy and physiology can be indulged when learning asanas. I did an O/A level in Human Biology in the 6th form which started me off being interested in how the body works ! I have had 13 operations - again another learning curve ! From Ileo-caecal TB in my 20's - to Crohns surgery - spinal surgery - and a benign tumour removed from the hip area and the TFL opened up and pinned back....to name but a few ...
So in a nutshell I have had lots of personal experiences that have enriched my journey to wellness....and am blessed with a brain that wants to learn more and a desire to go around the next bend !
Thank you for replying so quickly to me. You have obviously have a wide and varied resource of knowledge. Thank you for reassuring me.
I am so sorry about your daughter I too have experience with people diagnosed with cancer.
I find myself quite in awe of your knowledge and I would request that you fill in your information details as this gives people the reassurance of your back ground.
I feel you are the person we could ask about spinal surgery but unless we can see this in your info how would we now we can approach you. So please fill it. Thank you so much xxgins
I have started to type up my medical history/profile many times - however it turns into a novel - and then I think who wants to read this ? I will however attempt a potted history...
Please could I suggest you may have been misdiagnosed with Fibromyalgia as symptoms of Fibro & problems with thyroid are quite similiar OR your diagnosis was correct of Fibro & could your body have been experiencing a prolonged period of stress due to an undiagnosed condition which now been treated decreases the stress therefore your symptoms are less now?
Mdaisy FIBROACTION
Hello Everyone,
My personal opinion is that Fibro could be be a precursor to thyroid problems. I would suggest that the Fibromyalgia causes problems with the hypothalamic pituitary adrenal axis (regulatory part of the body controlling the hormones etc) and therefore affects your thyroid.
It could be very likely people have Fibro before any diagnosis of Hypothyroidism and unaware at the time as they have similar symptoms to Fibro. I personally think that the person who thought they had Fibro then had Thyroxine tablets claiming they felt better after treatment, merely had the symptoms of Hypothyroidism (that are similiar) and not Fibro at all.
I would be interested to read any comments from Lindsey on this subject,
Thyroid issues should be ruled out (or isolated) before a diagnosis of Fibro is made. Does this always happen? No, so some people are mis-diagnosed. Does that mean that Fibro is hypothyroidism? No.
Having said that, having ANY chronic condition seems to increase your risk of having Fibro. This has been especially studied with the rheumatological conditions, such as RA or Lupus, but it also discussed by experts in relation to many conditions, from hypermobility to endometriosis.
Fibro is the end result of what can be a long process in some people. The over-stimulation of the Autonomic Nervous System - that leads to poor response from that system, central sensitisation, disturbed sleep, low levels of available dopamine and from there to the many symptoms of Fibro - can result from any extreme or long-term stimulation of this system (anything that triggers your body's fight-or-flight-type mechanisms). In some people this is linked to a long period of emotional stress, such as an abusive relationship, in others it is linked to compression of the cervical spinal cord, in others it is linked to trauma and in others to a pre-existing condition (even if the Fibro diagnosis came first). If you have a chronic condition, especially one that is uncontrolled, your body is under stress even if you are not aware of it.
I am so happy that you have such good health with positivity, however I personally think correcting any thyroid problems in Fibro is one piece of a jigsaw rather then the solution. Misdiagnosis of Fibro may happen and when people feel better after treatment for a diagnosis of Hypothyroidism, I would personally be thinking it may not have been Fibromyalgia at all
That's interesting the neurologist that dissed me last year said I had CFS and an autonomic nervous system problem and that amytriptyline would fix it.
Six months later I am diagnosed with Hypermobility Syndrome and Fibromyalgia Syndrome by my rheumatologist after I'd had IBS related surgery caused by constipation from the codiene etc. My Pain consultant reckoned I'd had both for quite some time so in truth I agree with the above however I'm now having thyroid related issues come to light so this is one to read more on for me. I find it interesting how everything connects like a jigsaw and its a good analogy to use. I've also been treated for long term anxiety and depression too.
I don't believe that either one causes the other but in fact they kick each other into place now and again to make us believe that they do. For instance what came first the chicken or the egg? For me that is the HMS or FMS and the answer is clear as HMS is genetic so I've had it since birth the syndrome level obviously not and unless FMS is genetic, which we're all wishing to find out also, then the question of which came first the chicken or the egg couldn't be answered as easily.
Hope I haven't confused anyone too much and this is my own opinion based on my own experience so please don't accept it to be the given truth.
I too am wondering about the thyroid debate so shall be educating myself on it as I confess I know very little about it.
Don't think I said it was a solution - but should be ruled out - as your colleague Lindsay says. Sadly the Thyroid Testing is woefully inadequate and simply thousands are missed. Also the TSH test that is mainly used in isolation is now under scrutiny. Again one size does not fit all.
My fibro was diagnosed by a Rheumatologist - OK so I didn't have it - that's fine by me too. I just know that when I started on T4 I still suffered with fibro in spite of a slight improvement. I was then on a T4/T3 combination - again more improvement. Now I am T3 only and even more improvement. I had spinal surgery which left me with damaged nerves/sciatica/numbness in the feet and so on - so yes there is still discomfort - but not the feeling that I am carrying a sack of coal on my shoulders and a concrete block in my lower body - sleeping for hours daily and so on ! Like you I have read and learnt from others the similarities of both conditions. I am presuming you have followed the works of Dr John Lowe - now sadly deceased - but a man very highly respected in his field. His book - The Metabolic Treatment of Fibromyalgia - is still available - but a huge cost - possibly a collectors item ! Removing almost all gluten and the nightshades has also taken me to another level.
Personally reading about how many pills some people have to take to enjoy any quality of life is staggering - if taking thyroid treatment, which isn't a drug - could reduce such an intake - then surely that has to be good. By the way I have had several lovely PM's from people which as always balances things !
Thank you for taking the time to write to me.........
In total agreement with Marzi about gluten, but I would also say look at the emotional stresses in your life too. We all have them but it's how you deal with them. Bottle them up, keep putting your needs last, keep going when you are beyond tired, over doing things when you feel good, can all add to ill health and thyroid problems. So sort that out too.
We have spoken about diet many times on the community forum, if you type gluten into the search bar you'll see how many posts there has been. We also did a poll and most people said they had tried certain diets and it made no difference to their symptoms, so they stick to a healthy diet now.
That's not to say Gluten free doesn't work for some , it probably does but again as with medications it is not a one fits all situation in my opinion.
It is great that you have read so many books and you feel you have taken so much from them. However, authors can write what they want based on their own experiences etc, have these books got any references to medical research papers? So is the statement that you are reading evidence based? I think in the most kindness way possible I'm saying 'don't believe all you read !'
Books I have read - The Thyroid and How to Keep it Healthy by Dr Barry Durrant-Peatfield - my UK Doc. Hashimotos Thyroiditis The Root Cause by Izabella Wentz PharmD, FASCP - The Hormone Solution by Thierry Hertoghe - a 3rd generation Endocrinologist - Guts and Psychology Sundrome by Dr Natasha Campbell-McBride - Paul Roninsons book - Recovering with T3. I am as discerning as anyone else reading a book - if you and I read the same perfect book we would have quite a different understanding of it I am sure. Look at the many interpretations of Shakespeare's work and others.... These are just some of the books and they are crammed with references ....and just bear in mind that evidence based medical research can be skewed too - depending on the funding !? - so don't believe all you read !
Please understand that my replies were just the other side of the debate. I agree you always have you evaluate what you read in the medical world. Medicine can change so quickly so keeping up to date is also important.
I personally agree that Thyroid testing needs more thorough testing using all the tests available to them despite if the first test shows a normal range. I have read some of late Dr Lowe's research and I personally think he possibly may have a piece of the puzzle of Fibro. I think it needs more research however,
I personally (not Fibroaction) think mitochrondial dysfunction needs more investigation for fatigue and the ATP synthesis feedback cycle and various other aspects too.
For now there are a few key findings that we have listed of the FibroAction website in our Factsheet range 'All about Fibro'
You know my partner i doing his degree in herbal medicine and I can also confirm that many so-called "scientific studies" are paid for by pharmaceutical and chemical companies to achieve the "correct result", or what we would call lies and money-making.
.....thank you Sistabliss ! I too am well aware of WIGO - what is going on - and yes you are right we all need to wake up if we haven't already ! Dr Tom O'Bryan - mentioned in your link - is the guy who organised the Gluten Summit - A Grain of Truth - that I mentioned earlier.... live well !
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Inflammation which starts in the gut can affect so much of the body including the brain.
Hi everyone, this is my first post. Can I ask does anyone else also suffer from cfs, candida or gluten intolerance as well as fibromyalgia?
To be or not to be – the fibro question
Newbie also!
My turn to be advised
