Is it autoimmune or does ANA rule that out?

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I've had health problems on an off like a yo yo since I was 10 but despite my protestations I've always been told it's just ibs and stress/anxiety and to go away and get on with it. The last two years however I ended up being so ill I couldn't work as I had such bad fatigue, IBS/digestive symptoms, aching muscles if I did anything and various other lovely symptoms and was mostly either bored out of my skull on the sofa or asleep. As I could just about watch TV but wasn't even able to read/process large chunks of text etc because I couldn't concentrate and just felt like an imbecile (I have a 1st class degree and am usually reading 4-6 classic novels concurrently). Anywho... I finally got to see and endocrinologist who said he didn't think I fit the pattern on chronic fatigue syndrome, as not enough pain/headaches etc as although I do get them, apparently not frequently enough.

So I got a part time job again as I'd had enough and couldn't stand doing nothing anymore. I managed ok with my 20 hrs a week for the first few weeks as long as I did absolutely nothing else but then had to drop to 10 as my symptoms started returning, to the point that now, I've been off for weeks, with continuing fatigue, I was getting intermittent low grade fevers that made me feel awful, low ferritin (6-10), breathlessness on some days but not others when I go upstairs etc, as well as my last three BP reading being low on top of a consistently low white count (neutrophils specifically) and the odd finger joint randomly swelling up and taking over a week to go back down as well as my menstrual cycle suddenly becoming totally messed up and having symptoms like sore breasts which normally follow a very specific pattern before my period arrives lasting double the amount of time compared to normal (and no I am most definitely not pregnant as I've sadly been far too tired for anything like that in longer than 9 months!).

I then requested my blood results which the endocrinologist did last year that he said was normal.

The ANA result says Moderate Positive, and the pattern and titre say Speckled >1/100 (++) - I have no clue what that all means as underneath it says positive can mean nothing?!

However now, after several weeks of those symptoms, the fevers appear to have abated and I am back to not feeling like death (fingers crossed) but wiped out after doing hardly anything - I certainly don't feel able to work yet which is rubbish as I've been off so long, but have a rheumatologist appointment on 5th Jan. Does the fact that some of the symptoms appear to have disappeared mean it's def not autoimmune?

Sorry if it doesn't make much sense. Feeling pretty sleepy for a change....

 

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  • Posted

    My understanding is that if you have elevated then it's time to look at something autoimmune going on. However, ANA is a nonspecific marker and does not tell us what is the cause (could be Hashimotos, for example). 

    Your symptoms sound like symptoms that I had for many, many years. For me, it turned out to be undiagnosed Celiac disease (autoimmune gluten intolerance). I lived for many years with chronic fatigue, low grade fevers of unknown origin, low blood pressure and POTS (postural tachycardia syndrome due to autonomic dysregulation, which you indicate some signs of), digestive symptoms, etc. 

    I would encourage you to get a blood test panel for celiac disease (one in 100 people have it and most are not diagnosed due to the nonspecific nature of their complaints). And EITHER way the blood test outcome goes, put yourself on a paleo or autoimmune paleo diet and heal your gut microbiome and watch your health improve because that will likely help whatever you have going on.  A celiac panel will not be valid if you have already removed gluten from your diet, so if you are interested in that test, get it before making the dietary changes. 

    Don't let them deter you from believing that something is wrong with your body--clearly there is and they just haven't found the answer yet. 

    Good luck to you!

    --Suzanne

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    • Posted

      I completely agree with you Suzanne.  I think that removing gluten will make a huge difference.  There are so many gluten free foods out there now and I am finding it not nearly the challenge I thought it would be.  You have to completely give up gluten and can never have any again.  If you do have a tiny bit then you wake up the antibodies and everything starts up again.   I didn't get tested as I figured that giving up gluten was a good move anyway but I agree that the test would help with a diagnosis before starting a new diet.

      I think there are many undiagnosed autoimmune conditions out there but it seems that gluten is likely to be a problem for them all.

      Good luck from me too.

      Sue

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    • Posted

      Thank you for your reply and sorry it has taken me so long to get back to you.

      I'm excited as only 14 days to go till I have my first rheumatology appointment!

      Since writing everything above I've also found out I have a Vitamin D level of 34 so am now taking a supplement and trying to eat egg yolks (my ibs doesn't like all the other vit d foods!) and I have also had problems with realising that when sitting or lying down I really struggled to lift my right leg - left leg was no problem though! Saw a physio today who said my deep hip flexor muscle seems to have switched itself off - he doesn't know why - usually it's in response to pain, but the weird thing was I had no pain and haven't injured it. So have some exercises to try and switch the muscle back on and remind it what it's supposed to be doing.

      I have avoided gluten since 2004 - so all the tests and colonoscopy I've had wouldn't have shown any coeliac disease - last time I accidentally ate something with a decent amount of gluten in was 2008 and I had diarrhoea, gas, bloating and felt really awful for about 5 days!! Luckily I lived at work and was able to rush home regularly!! Although I do check ingredients etc on what I eat - I do share my home and kitchen with my gluten eating partner - so I guess I probably still get traces - whether it helps of not I don't know - but I even use toastie bags to use the toaster in an effort to protect my special bread from all the gluten bread and crumpets etc my other half puts in the toaster. No idea if it's necessary or if it works!!

      These symptoms confuse me so much, as without doing anything different - the last couple of days, I just felt a lot better - still in need of the odd nap - but have been able to do a lot more and loved it!! Trouble is trying not to get too excited and still pace myself as I don't know how long it will last! So enjoying it while I can!!

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    • Posted

      So glad that you are getting your vitamin D level up (so important for autoimmune issues!) and already know about your intolerance of gluten (I react similarly to accidental exposure to gluten, and I know that I have celiac disease). Glad also that you are seeing your rheumatologist soon--so important to follow up on that ANA and the fevers of unknown origin which sound autoimmune, too. Happy that you are in a better period right now. Please let us know what you find out at the doctors!  --Suzanne
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  • Posted

    Just wondering how you got on at your appointment?

    i also have had a "positive" ANA result.  My eye dr wrote to me saying it was positive and asked my GP to refer me to a rheumatologist, but my GP said the test is irrelevant and doesn't mean anything.  Confused!

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  • Posted

    I've had my appointment - I was terrified but she was really nice - I wrote a summary of my issues and my health history and family health history which she found useful, and she's done a load of bloods and a chest x-ray which I get the results for in about another 7 weeks - if she sees anything autoimmune she'll send me a follow up appointment, if not, she'll refer me and give me a diagnosis of chronic fatigue syndrom/ m.e./ fibromyalgia.

    She also told me I am indeed hypermobile and have neutropenia and a vitamin d deficiency, so am taking vitamin D.

    I'm still off work - it's been 2.5 months sad but sadly I'm still not ready to go back - I tried to get up and do things normally - though slowly - yesterday and I ended up so tired I couldn't cook a proper meal, couldn't eat half of what I did make as I was so exhausted and then slept for 10 hours straight and feel like I've been hit by a truck in the night and reversed over several times. So I'm thinking that's a pretty big indicator that I'm not ready yet... :-/

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    • Posted

      Hi--Just saw your reply. Thanks for updating us. What did the doctor say about the neutropenia and hypermobility? Glad that you're getting your vitamin D up. How are you feeling at this point? Did your doctor have any thoughts about the elevated ANA and difficulty lifting your leg? --Suzanne
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    • Posted

      Oops think I accidentally have two accounts on each of my email addresses!! :-/ I've got another 6 weeks before results, but she didn't say much about - ANA she said didn't matter as it's was borderline, and the leg didn't seem to register on her scale as I think she was so busy with my massive long list of symptoms - but I have a telephone consult with my gp tomorrow, so I'm hoping she will have something constructive to say, as even though I've been trying to use my leg more, it's still the same if I'm laying or sitting?! Am also doing as she suggested and eating gluten again for a few weeks to do another coeliac screening - as it would be helpful to know for sure (I've always been off gluten when I was tested before) - I'm almost 2 weeks in and my ibs isn't thrilled - but I've also not dropped dead from it, so that's nice - but some people with coeliac said that if you've been off it ages then your gut could have healed so it may take a while to undo the good to get the positive result and damaged insides....so we'll see - I'm keeping my fingers crossed that it's just been a massive misunderstanding and that I'll be able to eat bread and gluten things again! It certainly might help me get a tiny bit of fat on me!
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    • Posted

      Hmmm. Well, I hope that you'll keep an eye on the ANA, especially after adding gluten as that could lead to more autoimmune reactivity if you do have celiac disease. Still mysterious about your leg--worrisome!  Though i know that I have celiac disease, I also went off w/o being tested before going off of it 22 years ago. I had two huge GI work-ups over the years, and no one thought to do a small bowel biopsy among all of the GI tests that I had (they weren't really looking for it back then). I was very sick, and each time I encounter it, I get really sick again. Both my kids have now been tested positive for it, so we know where they got it. I went back and forth about reintroducing it a few years ago to validate my experience to my doctors. However, I read at that time that reintroducing it can increase the chances of lymphoma and other problems in celiacs. Then I thought that I didn't need to "prove" what I knew to my doctors (though they never question it now). But, if you think that you might actually not be gluten intolerent, that would be great news! I know that I can't handle it, so would just struggle through a reintoduction like that to get proof. Good luck--I hope that you can eat wheat again. --Suzanne 
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  • Posted

    Sounds like u could could be gluten intolerance. Try the gluten free diet for a week and see if u feel better. 

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    • Posted

      I've been gluten free for over 10 years - though have potentially been around a lot of contamination etc - so the consultant has just asked me to eat gluten again for 6 weeks to do coeliac screening - scary, but at least I'll have an answer one way or another! I'm almost 2 weeks in, so another 4 to go!

      My ibs isn't thrilled, but thinking about it, that could be because the two slices of bread a day I'm eating are wholemeal, so maybe it's not keen on that. I'm going to go to a nearby artisan bakery tomorrow- might as well enjoy it while it lasts!!

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    • Posted

      I have IBS yogurt really helps .  U could try keeping UR gut bacteria balanced with yogurt while having to eat gluten for testing purposes. Live bacteria in non flavored Greek yogurt will keep the tummy aches and D at bay. 

      There r many foods I cannot eat especially sugar and many foods with small seeds and veggies with skin on outer layers such a peas, tomatoes even lettuce.

      I cannot eat the yellow of the egg but the whites are fine. 

      Eveyone is different with celiac and IBS.. The biggest offender for my tummy was fried foods and eating out. When I did get really bad tummy cramps I drank hot tea and or just hot water really settles things down quickly. Suffered many years with this then 20 years ago started eating 2-3 yogurts a day. And badda bing all my D and cramps are gone. It was like day and night! Someone had flipped a switch!

      Good Luck to you and I hope u can get to the source of UR tummy issues. 

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