Gluten-free and Fibromyalga?

[Abby]

Sorry if this has been asked before, but I'm very curious, as most of my symptoms correlate with my mother's- with Fibromyalga, depression and IBS. I'm not skeptical about them, although there's no firm or proven diagnosis of any, I'm just curious. All my symptoms seemed to improve massively without gluten and dairy; I'm convinced I've got an intolerance, if nothing else. I'd just like to know if there's any evidence of this anywhere else that I can show my mother for her benefit, as she's just settled for being pretty much immobile and it's sad to see. Although I'm suffering the same pains, I'm fighting to do something about it and she's lost all hope really. I've also been referred to research a low Fodmap diet, what are people's thought's on this?

[Hidden]

Have you thought that she might have a thyroid problem which is often misdiagnosed as fibromyalgia? Thyroid blood tests as done by the NHS are OFTEN not reliable. You may want to check the Thyroid UK community on Health Unlocked and also their main website thyroiduk.org. Food intolerances can often also go hand-in-hand with hypothyroidism.

Jane x

[Lynxcat]

Hi Abby,

There has been a few pieces written about Fibromyalga and its link to Coeliac Disease so I am including some of the links in the hope that this may be of help to you:

celiac.com/categories/Celia...

ezinearticles.com/?The-Link...

thesavvyceliac.com/2009/03/...

celiac.com/articles/117/1/F...

glutenfreenyc.blogspot.co.u...

Diet for Fibromyalga:

celiac.com/articles/118/1/E...

This is from Youtube showing Low Thyroid Symptoms, Fibromyalgia, and Celiacs Disease:

youtube.com/watch?v=OefLrLF...(Not working as expected?)

Explanation of the pain from Fibromyalga:

youtube.com/watch?v=Dy9alrs...(Not working as expected?)

US Forum:

celiac.com/gluten-free/topi...

I hope that this may assist you a little.

[Lynxcat]

Hi Abby, Quite by chance whilst checking out something else I have just come across this on Gluten Free Works website. You may find it of interest:

glutenfreeworks.com/blog/20...

The website suggests that many have Vitamin D deficiency, Protein deficiency, inability for the kidneys to flush out phosphate build-up and to always start with going completely 100% gluten free.

"For those of you suffering with Fibromyalgia, first go 100% Gluten-Free…..then look into these other causes / treatments. I promise you, there is hope. You WILL feel better if you take the steps and have the discipline to do so."

Also a page about gluten mentions this:

"A high gluten load simply means we are eating a diet that contains too much gluten. Of course, the more gluten we eat, the greater is the risk of protein fragments entering our bloodstream."

To read the whole piece please see the following link:

glutenfreeworks.com/gluten-...

[ailsamary]

I have fibromyalgia and become defificient in several minerals, my rheumatologist thought i was coeliac and i had all the tests - plus a lot more, which came back clear, however on her advice i went gluten free and it makes a big difference to some of my pains, i also malabsorb so when my vit D drops my joint pain increases

I also have an underactive thyriod although those levels are within normal on my medications, i feel depresssed at times but this is more to do with what is going on rather than a clinical depression,

hope this helps on a personal side

ailsa

[Liana]

Hi Abby ... just to let you know ... you are not alone. I was first diagnosed with Fibromyalgia 15 years ago. I have since been diagnosed with IBS, Hypothyroidism, inflammatory osteoarthritis, gluten intolerance, chronic spinal pain (from 4 medical conditions) hypokalemia (chronic potassium deficiency), and depression... I have other medical problems too, but they are related to heart. I take vitamin C in theraputic doses, vitamin D, potassium in theraputic doses and magnesium. I eat a strict gluten free diet in addition to a special diet to address the IBS and my multiple food allergies and intolerances. I exercise every day, meditate and do music therapy. I don't take any drugs for pain because of multiple drug allergies and adverse reactions. The diet does help with the pain, but it doesn't prevent symptom flare ups with the Fybromyalgia or the IBS. Still ...I'm doing much better and hope to start a new job, part time, in the spring. For me, it's all about finding the tools that help me live a rich, happy and fulfilling life in spite of all my medical challenges! Each person is unique ... my advice... find what works for you. Take the best of each thing you try and throw away the rest. I have an amazing medical team to support me and provide answers. I hope you are able to build one of your own and find solutions.

[RusticRita]

Hi Abby, There's some great advice with the previous answers and as Janet B and others have stated, there are definite connections between hypothyroidism, gluten intolerance/ coeliac and fibromyalgia as well as Hughes Syndrome (I've been diagnosed with most of these) I think all the aforementioned can be auto-immune in nature, but they aren't always picked up by the limited NHS tests, especially hypothyroidism, until they are chronic.

Unfortunately because of the internal politics and structure of the NHS there isn't too much joined-up thinking about all these connections, but patients and private doctors have been making them for some time. There's a good link here that might be useful:

chriskresser.com/the-gluten...

I've only been gluten free for a few months but it's made an amazing, positive difference to many of my symptoms, especially joint pain, brain fog, IBS and energy levels. As Liana noted, it's also very helpful to take regular doses of Vit C (helps calm the immune system) and a good quality gluten-free multi-vitamin and mineral which has the B Complex (great for fighting depression) Vit D and Magnesium as well as Omega 3 oils.

It sounds as if your Mum would really benefit from a gluten-free diet, even as a trial to see if her symptoms improve, but definitely push her to get her GP to test for hypothyroidism too, as it sounds as if she might be getting to the stage where it could show up in tests.

[1stgls]

My GP does not believe in the "modern syndromes" fibro/syndrome x/chronic fatigue, so although have days which are horrendous ( a long list of stuff) He will not help in any way shape or form---it is my "age" and "empty nest" --although I have 2 children still at home and I have hormone replacement

[RusticRita in reply to 1stgls]

Hi 1stgis, That kind of attitude from a doctor both annoys and alarms me! There are plenty of medical studies and too many sufferers of these illnesses to deny their existence (even while the causes are still up for debate), and his attitude sounds very sexist! These symptoms have nothing to do with "empty nests" (what a misogynist comment!) and although there is a question mark over the age-factor (as there do appear to be big connections between hormone balance and thyroid disease and gluten intolerance), you should still be able to lead a full and healthy life if everything is in balance.

Unfortunately the onus seems to be on us to investigate and educate ourselves on our own health issues in order to push our GPs into giving us the treatment we need, and thankfully the internet used wisely is a great source of information. I'd seriously think about putting your symptoms in writing and challenging him on them or think about changing your doctor altogether. Best wishes.

[1stgls]

Hi RusticRita-- the only reason I got my CD diagnosis is through a locum!-- however things are-a-changing, the gps have changed their hours and he has gone part time= other doctors in the practice. Hurrah.

[katethebake]

Hi, I know I am late in answering this thread but i noticed that no-one picked up on the fodmap question you asked. I work with our community dietitian team, several of whom are currently following low fodmap, and in one case, low fodmap and gluten free diets. All of them have said they have vastly reduced their IBS-type symptoms as a result. it is not an easy diet to start but they have said that (much like gluten-free) once you are used to doing it, the diet is quite easy to manage. It might be worth checking out whether the dietitians in your area have been trained on the low fodmap diet yet - if they have, they will probably be able to guide you through.

I have fibromyalgia too and use magnesium malate as the basis for supplementation to help manage symptoms. I also take a targeted fibro supplement, which is expensive but, in a higher dose than on the box, helps me manage a flare up quite effectively. Message me if you want more info.

[Jill121 in reply to katethebake]

Can I ask are you not on strong pain killers for your fibro as im on tramadol and im sure its those that make me so tierd all day and im fed up with not being able to lead a normal life, get up do stuff, go to work i cant do any as im always tired or sleeping Jill