Anyone else out there diagnosed with small fibre neuropathy and a mixed connective tissue after coeliac?

Was wondering if there's any others out there with the same issues as me.

It started with painful feet and hands so bad I could hardly stand for any length of time. Then the fatigue hit and upset stomachs, after 7 months and many consultants I had coeliac confirmed. After starting the gluten free diet I did feel much better but the hand and foot pain was still there after a year and really affecting my daily life. Finally refered to a neurologist by my rheumatologist and had emg tests to confirm small fibre neuropathy-next challenge to find out the cause of it. Another 9 months have passed and my blood tests in rhuem eyes show lupus but neuro thinks its sjogrens hence been given the mixed connective tissue disease title. I have been having increased joint pain in knees, elbows, face pain, fatigue, sensitive to light and very anxious. On lyrica for the neuropathy and hydroxychloroquine for the lupus symptoms. I have custom orthotics now which I would be lost without, still can't stand for more than a few hours though. Eating gluten free doesn't phase me at all, its the darn nightshade vegetables I must cut out and dairy which increases my overall inflammation. Would be great to hear others situations if similar!

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  • Since I've gone gluten free 16mths now, my swollen joints in my fingers has just about gone back to normal now....and I no longer have any pain....it got so bad before I went gluten free that I couldn't pick anything heavy up..as I would end up dropping it because of the pain in my hands...

    It did take nearly 12 mths for it to get better, and I have to be careful what I eat, I eat very little dairy.......I eat lots of oily fish....

    Janie

  • Hi Jamie

    I can relate to the muscle weakness too, I could hardly open the large doors in my work with one hand and carrying shopping that was a no no too! Ive been gluten free 21 months now. I have my annual checkup next month with the gastro I wonder if he will want another pill cam this time to check I'm healing. It's all these other autoimmune conditions that I have to master how to deal with :0)

  • It seem to differ from person to person, my hair started to come out and it's only been the last 4/5 months that its growing back again, and my nails have grown long again.....first time in 6/7 years....my skin is loads better now, although if I get glutened I get a horrible red rash that breaks out on my face........being coeliac seems to bring a long list of weird symptoms....it's nice to know there's a reason for it all....and your not just goin off ya trolley...

    Janie

  • hi cath_c.

    with similar symptoms to yours (unable to walk or stand up due to foot pain, joint pain, exhaustion, hair falling out, sight problems including light sensitivity and inability to see at night, and anxiety symptoms), i was diagnosed with fibromyalgia.

    i was already gluten free but started to have allergic reactions to nightshade foods so cut them out of my diet. the best effect has been on my feet. i can walk and run now, i can feel when i have eaten something nightshade (which happened this thursday) as my feet become very painful and i get unmanageable exhaustion within a few hours.

    it isn't the easiest diet to manage but it has completely changed my life and for that, i am happy to tolerate it.

    buying off the shelf gluten free products is almost impossible as virtually every bread and baked good has potato in it but there are a couple that are ok:

    - "yes, you can" breads are potato free - and i think tesco stock them.

    - ds ciabatta rolls (4 for £1.80) are good too.

    You won't be able to eat anything made with Doves Farm gf flour blends so that also rules out almost all products from small producers and farmers markets.

    When i was diagnosed i designed the range of products that Kent & Fraser make so they should still be safe biscuits and cakes, but tbh, it is much easier and much cheaper to make things yourself.

    have a look at paleo diet websites, most of them have some nightshade free recipes.

    it is quite easy to make a passable "nomato" sauce for pasta etc.

    i have only just cut out dairy but after everything else, it has been a breeze (sorry if that sounds flippant) as things like pizza are already no-go areas.

    if you can't find recipes by googling, or have any other qs, feel free to message me.

    good luck!

  • Hi katethebake,

    Great to hear about all the bread options, to be honest I hardly eat any bread at all but will look out for the ciabatta rolls you mention. I did buy the yes you can bread last week and it actually toasted very well! As you say I hardly buy any sweet goods but instead make my own with the flours I gets on prescription. Would appreciate any advice re the nomato, sauce hadn't considered that! Its all trial and error but have found keeping a food diary again has helped too.

    Many thanks for your comments :0)

  • ncbi.nlm.nih.gov/pmc/articl...

    I have Hughes, Sjogrens, Hashimotos ans now looking at Lupus so looks like a mixed connective tissue dx for me too! Im also on plaquenil rather than the generic which actually makes a big difference (a lot of people say the same even though a generic is not supposed to be different). though being GF has helped my stomach it has not improved other symptoms.

  • Interesting as I have only been on hydroxychloroquine for a few weeks and have read online how others have said plaquenil is better. Where you always prescribed plaquenil? Is this something my gp can prescribe at my request or does my rheumatologist need to suggest it? My stomach has not been right since I started on it and its like being a newbie coeliac all over again not good :0(

  • Don't forget you can also pose your question to lupus group on HealthUnlocked. Some also have Coeliac and are happy to help discuss pros and cons of drugs they're on: lupusuk.healthunlocked.com/

  • yes, I have been going through hell for the last year. I was diagnosed with coeliac in 2004, but never really felt myself again and had probs with fatigue etc. Then last may I started having stomach acid probs so they ran a whole load of tests and I have tested positive for limited scleroderma, but don't have the classic symptoms. So they think it's some type of connective tissue disorder, but not sure what one. I suffer from a very tight chest and pelvic floor muscle, and have severe acid reflux and a leaky heart valve. I get joint pains, but is not that bad. So I haven't a clue what I have, but I am very ill. They are querying Lupus...

  • Terrible to hear you are in the same boat, with doctors not knowing what's going on. All my consultants keep calling me 'an interesting case' as I too don't have typical symptoms. This is frustrating as i have been put on the lupus meds and told I will be seen by the rhuematologists in 4-6months. It's hard just being left to deal with it...when you don't quite know how to deal with a mixed connective tissue disease and how to explain it to others how you feel so ill and have no energy.

  • Yeah, that's what they say to me - I also have polycystic ovaries but without the syndrome and they thought that was weird too. That's a long time to wait, I'm the same I have been ill for a year and the progress is very slow. Does the sun affect you? And do you get a rash? I only get a red face and it stings, but that could be anything, but that's why they are querying Lupus. I wonder if they could try me on the medication to see if it helps me. I'm trying to push for the antibiotic protocol therapy treatment, but it's not such a known thing in the UK.

  • Well when I last saw the rhuematologist in Feb this year that was the first time them mentioned lupus, as I have the neuropathy in my hands and feet that is most likely caused by the sjogrens but my blood tests point towards lupus with positive ana, dna increased and c markers reduced. I am very fatigued eyes sensitive to light, my cheeks get so sore which I think is my glands and have noticed I don't like being out in the sun at all these days. No rash to report as yet but I do have joint pains and get very cold extremities . especially when I go to the cinema the air conditioning goes right through me. I also have been very sensitive to sound every loud noise irritates me like my partner putting the cutlery away ugh! No one wants lupus and I don't appreciate the label of possible...likely.. Lupus..therefore mixed connective tissue title is given while they watch me and wait for deterioration.