Fibromyalgia : Has anybody else been... - Gluten Free Guerr...

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Fibromyalgia

tetloww profile image
17 Replies

Has anybody else been diagnosed with fibromyalgia who is celiac diagnosed or in diagnosed celiac. I had severe joint pains. Shoulders in bed. Knees in the morning and going up and down stairs as we as getting up from crouching position. Ankles and wrists. I'm not over weight. My dr is going down the fibromyalgia route and so far the medication has taken the pain away. I have heard that it can run along side with celiac???? Any help in answering this question very welcome.

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tetloww profile image
tetloww
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17 Replies
Grew profile image
Grew

Look into triggers. I am same as you. Nightshade veggies and dyes are triggers for pains and inflammation. As long as no potato especially, I am good. No meds needed for me. Worth a try.

denisemilden profile image
denisemilden in reply to Grew

sorry if i sound daft but what is nightshade ? as i am celiac and have fybromyalgia

in reply to denisemilden

Hi there, heres a couple of links about nightshade foods and why they can affect our joints:

diagnosisdiet.com/nightshades/

paleoleap.com/nightshades/

And it's not daft at all it is a very pertinent question.

virgolizzy profile image
virgolizzy

Yep I agree with the previous comment, there will be triggers & again for me, nightshades, particularly potatoes. almonds & other grains also do it to me. concentrate on finding the triggers, eliminate them & concentrate on healing the gut fully. Maybe once that is done, you can look to try & reintroduce, but this is a long process. Good,luck.

Grew profile image
Grew in reply to virgolizzy

And even though it hurts like hell, start moving. I started by walking houses, then blocks, then riding bike houses, then blocks, etc. I jog 1/2 mile and walk the rest now. There are supplements (natural) that could possible help you. They helped me I believe. Give your body what it needs and it will reward you.

Stephpz profile image
Stephpz

Agree with other comments.

I'm undiagnosed (my kids are reason Im on this site plus Im gluten free for joint stiffness and pain) but Rhuematologist trying to pin fibro on my symptoms. Celiac is an auto immune disease and joint pain can be symptom. So itmakes sense that our systems also deveop other auto immunes.

Fibro is more nervous system and muscles than joints. Hemce why I am not satisfied with dx. My advice is read up online.

tetloww profile image
tetloww

I don't eat a lot of potatoes but when I do I rinse to remove starch. I eat veg (greens) to keep my iron levels up. Will be gutted if I have to start reducing/stopping the things I eat again. I'm gluten free as I'm gluten intolerance but don't absorb b12 folate and ferrous iron always low. My consultant can't diagnose me celiac as I can't eat gluten but he has gone through all procedures to rule out sinister causes. Thanks for the come back but I'm really gonna have to sit and think about this as my stomach is quite happy at the min and have got my weight back up to normal. X

mrsm49 profile image
mrsm49

Nightshades affect me too, in fact before i realised this I used to limp so badly with hip pain and I was only in my thirties. Now I can get away with occasional small amounts (eg when it's awkward to avoid when out etc esp as also gluten free) although that will make finger joints hurt and make me itchy but hips ok now and that was the worse pain as it made it hard to walk.

alicat1965 profile image
alicat1965

I agree with so many on here, I have been suffering from Fibromyalgia for around 25 years, I chose to move abroad where the air was drier (I used to live on the North East Coast of England) so even in the summer the sea fret used to affect me. I have suffered with joint problems for many years, but the last year I was literally crippled the inflammation was incredible, and nothing (I was prescribed morphine) was not taking pains away I had these pains in EVERY joint, not sleeping as the inflammation was so intense.

I was sent for MRIs on my knees as they were the most inflamed only to be diagnosed with GONARTROSIS OSTEO ARTHRITIS GRADE 4 Tendonitis damaged menisci, so I was given CONDROSAN to take so 800mgs a day, then I went to the TRAUMOTOLOGIST who told me there was nothing more to do as it is wear and tear and my age, he said to start Rehabilitation (starts in June this year and this was November last year) which was just rude as I have thankfully since moving abroad never stopped working.

Anyway I was going to my CHIROPRACTER weekly and he suggested that I look at my diet, to basically clean the blood, and get rid of toxins which had built up. I had already stopped ALL medications as I was on 8 different tablets total 12 a day.

I came home after being told nothing else can be done, so I came home felt sorry for myself for 2 days, then I thought I cannot wait until June for rehab so I went to the great internet and You Tube and started to type in what I needed to do for myself before June this year to start own rehab, I then came across information on taking in PURE ORGANIC TURMERIC for the inflammation (I use turmeric for my cooking but was not having the desired affect as was not taking it in daily) so I began to take it in daily (now I purchase pure turmeric with bioperine) it is the only way it helps literally cut down inflammation, I then found out about NIGHTSHADE and stopping ALL WHEAT, BARLEY, OATS, RYE, and no oils.

I can say since starting this I have improved by 80% however rebuilding my cartilage will take longer time, so am making my own Collagen Broth as well as taking it in powder form. I take a 4-6 tablets daily of GLUCOSAMINE/CHONDROITIN/MSM 1-3 PURE ORGANIC TURMERIC 5000mgs of VITAMIN C.

No NIGHTSHADE, POTATO, AUBERGINE, TOMATO, RED PEPPERS.

I am sleeping much better as I now drink 2/3 litres of water including Green Tea, and I make my own fruit juice which lasts me around 3/4 days, which has so many properties in it.

My suggestion is this go to You Tube and check out for yourself these NUTRITIONISTS (Peter Glidden, Joel Wallach, watch also John Bergman) and if you are not sure find one in your area that have all the qualifications, it should be around 30-40 pounds for information and help with what to take.

Sorry this is a long story but it is the only way I can explain that I no longer use crutches to walk I get twinges yes as cartilage still needs to regrow, so I am not 100% but I am so grateful for this information, also as I say you are more than welcome to email me for how I started and the eating habits I have done away with and what and how I now eat every day alibades_03@hotmail.com

I am happy to let people see the changes it has made, as I was a SKEPTIC and the biggest one of all.

Wishing you well, and hope some of what I say has helped.

Grew profile image
Grew

Potatoes (but not yams or sweet potato), tomatoes, peppers (bell peppers are huge triggers for me), paprika, eggplant, goji berries. I do okay for the most part if tomatoes are cooked but watch intake. I do better on red potatoes but definitely feel it with regular potatoes or things made with potato flour. It is so worth a try and give it time for the compound contained in these foods to be removed from your body. Give yourself three weeks to a month and see how you feel. That means a lot of g/f pre-made things are out but there are great substitutes. i found I can do spaghetti sauces and pizza sauces but not every day. Forme, just picking out green or red peppers out does not reduce affects. I steer clear away. That includes pimento. Google nightshade vegetables for more information. Let me know how it goes.

Grew profile image
Grew

Well said Alicia, I didn't know if you can get indepth with personal treatment here so I didn't. But still what works for one may be different for everyone else. And as previously mentioned, it comes down to your gut. And if it all starts with the breakdown of foods and release of enzymes, etc. your screwed. You can't absorb B12 if stomach is in dysbiosis, etc. you have to get to basics. Alicia listed many referrals. Plus dig more. Read everything on healing your gut. Bone broth is great. Probiotics and supplements. Feed your body and don't feel sorry for yourself. You are on a mission. Picture the day you are jogging or dancing and feel great. Don't let dx rule your life. You are just an appointment in the waiting room.

Grew profile image
Grew

Sorry, I refer to alicat..not Alicia.

tetloww profile image
tetloww

But I don't eat peppers I hate them. My fav veg is broc. Spinach carrots green cabbage cauliflower peas. Green beans. Red potatoes as roast or mash not very often. Ive been gluten free totally for 2 years but 3 years before I was majorly reducing due to stomach pains and I was also passed from pillar to post for 2and a half years. So taking on another challenge at the min seems daunting as I'm feeling so well. Dr has prescribed me a very low dose of amitriptyline 20 mg at night and so far this has really help with my joint pains. She has offered me X-rays on my knees but to be honest I am again fed up of more tests. I've had a dexa scan and that came back ok. I struggle with milk so drink koko milk. But can tolerate some dairy spread out in the week. Your comments are great but have shocked me a little in that I now have to look at the foods I'm eating again and that they are all gluten free foods. I'm quite an healthy eater but I do work full time as well as help out looking after my 3 year old nephew so I am always busy busy busy. Dr did say I need to slow down but easier said than done xx

Marz profile image
Marz

I was diagnosed with Fibro in 2000 and with Hashimotos in 2005. As my thyroid treatment improved and I learnt so much about what was needed - my Fibro disappeared. You also need good levels of B12 - VitD - Ferritin - Folate to feel good. Also have you had your thyroid tested ? When thyroid hormones are low - then everything slows down and things begin to go wrong.....

Having gut issues when the thyroid hormones are low is common. This can be due to there being so many receptors in the gut for T3 - which is the most needed thyroid hormone - and yet rarely tested by the GP.

tetloww profile image
tetloww in reply to Marz

I have my bloods checked every 6 months now and tft has been added on by consultant. I'm on b12 injections every 12 weeks and maintenance dose of folic. I try and control my ferrous with eating red meat as advised by consultant vit D in range but I'm taking a daily tablet to keep it that way. BUT last year it did crash and I started with joint pain. Went on vit D course and joints improved so think that deffo has something to do with it. There seems to be so much that runs along side celiac never know what gonna happen next :( thanks for info x

Marz profile image
Marz in reply to tetloww

Let's hope they test for the FT3 and the anti-bodies. The auto-immune thyroid condition is the most common worldwide :-)

Many chronic conditions start with problems in the gut. I have had Crohns for 42 years so have gained some knowledge along the way !

Also you will need good levels of stomach acid to break down red meats - I do not know your age - however as we age stomach acid is often low making this process difficult.

tetloww profile image
tetloww in reply to Marz

I'm 50 this year in June. My sister has crohns and my nephew. My 22 year old daughter is like me and struggles with gluten. My life of constipation. Anaemia bloating and tummy pains is all making sense now. I've always been quite an healthy eater but the final trigger was the job I'm in now for 6and a half years is one where there is always cakes and biscuits to be eaten and too tempting to walk past haha. Within a year of working there I was on the floor in pain and ended up in A/E with impacted bowel. I should be seeing the consultant again in the next few months so will be mentioning this new aquired joint pain to him. Thanks again for your info x

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