I’m worried dd has lupus or some other autoimmune problem.

[Stupiddriver1]

She’s 18yo and has been diagnosed as coeliac for a year. I know this can increase the risk of other autoimmune problems.

She’s obviously strictly gluten free, we’re aware of cross contamination and she has her own toaster, knives, chopping board, butter, jam, etc.

She’s fine most of the time......her last blood test (can’t remember the name of it) was 4 which is low/normal. If she was still frequently having gluten it would be higher.

So on going symptoms are mouth sores/skin sloughing off the roof of her mouth, bad joint pain....particularly her hips. Chest pain. She’s still anaemic/low ferritin even though she takes iron tablets twice a day. She also takes 3000 vit d a day. Her last vit d check had levels of 57, she was only taking 1000 of vit d a day then so we increased the dose as I know that even though 57 counts as normal it’s better to be over 70.

Sometimes she’s breathless. She has chronic fatigue. I mean totally exhausted. She’s spent nearly the last week in bed, she’s been unable to go to uni. She fainted on Thursday, but not out cold. She was staggering about, was disoriented, said her vision went and slid down the wall. Her Saturday job have just sent her home early as they said she appeared ill. I went to pick her up and she almost seemed drunk, I could barely get any sense out of her, she was struggling to stand.

She has an appointment with her gastro consultant next week. I have a big list of ongoing symptoms. Do you think I should ask for a referral to another specialist? Like an autoimmune consultant?

My daughter was diagnosed with lupus when she was 17. This was after a few years of trying to find out what was wrong with her. She started suffering with weak limbs, numbness in many areas, feeling faint, losing her energy, and suffered with Raynauds. It was an awful time and took the best part of two years to get the diagnosis. She had MRI's, many many blood tests and finally a week in Great Ormond Street where they finally delivered the diagnosis. They told us that in all likelihood she would not be able to have children as the antibodies would attack the foetus etc. I'm very happy to say that since her teenage episodes it hasn't recurred. She is now 37 years old, has two beautiful children and has fulfilled her dream of becoming a police officer.

I've got Rheumatoid Arthritis (autoimmune disease not arthritis) and Ehlers Danlos Syndrome and her symptoms are very similar, I'm also a suspected coeliac (ongoing diagnosis) . I think she needs to see a rheumatologist as they can advise on autoimmune and EDS.

In the interim, Deliciously Ella is a good source of gluten free vegan recipes.

Well I found the Beighton Hypermobility test online and just tested her and she scored 7 out of 9.

Glad to hear that your dd has gone on to be ok @ThroughAGlassDarkley. Think I’d always assumed lupus was a constant or even a progressive thing.

My ferritin are at the same level as your DDs (trying to get them up with supplements and red meat etc) and I have all of her symptoms and feel horrendous most days. I’ve been tested for pretty much everything you can think of and the specialists now think it’s the low iron causing it all as it can have nasty side effects being so deficient. They also said it’s a very slow thing to build up again and can take 6-12 months minimum of taking high strength supplements

I really hope it is just the low iron levels as that’s fixable even if it takes a while. She does have terribly heavy periods, flood everywhere. She went on the pill for a bit but put on weight so didn’t want to continue. She’s currently got her period so maybe that’s why she’s been feeling worse than usual the last week.

Hope you start to improve Caramel78

Some of her symptoms sound the same as chronic fatigue syndrome & Fibromyalgia, she needs a lupus factor blood test to find out if she has lupus. She needs a referral to rheumatology for proper investigations.

I don’t know why her GP hasn’t referred her for this then. She’s actually been and told the GP she thinks she has lupus! He just keeps fobbing her off by repeating her FBC blood test. He sent her to see the nurse for an ecg last week which was normal.

@Stupiddriver1 it can be a progressive and recurring illness but my daughter so far has never had any other flare ups.

Her gut won't have recovered enough to be absorbing the iron, you should push for her to have an iron infusion, my iron was low for ages after being diagnosed with coeliac disease the infusions helped me feel normal again

Right, have made a GP appt for a couple of weeks time and am going with her and will ask about a rheumatologist appt and also about iron infusion.

Apart from the sore mouth you could be describing my DD. Diagnosed coeliac in May and no real improvement in symptoms since cutting out gluten, but gastric symptoms were never dominant anyway. She has joint pain, chest pain, fatigue, Raynauds and feels unwell all the time. Had low vitamin D which has been corrected and is at the end of a 4 month course of ferrous fumerate. Recent Bell's palsy. Has seen a neurologist who thinks she has atypical migraine. Like you I'm convinced she has an underlying autoimmune condition other than coeliac but no one else seems to be joining the dots and I don't want her to be over investigated or become paranoid about her health. So hard to get the balance right.

Sorry to hear your dd is also unwell choirmum

I know what you mean about not wanting to make them anxious about their health. It is hard to strike the balance. I also think though if dd gets a diagnosis with possible treatment or ideas to lessen symptoms that would help.

Yesterday dd took a bite out a normal sandwich and swallowed it. First time since diagnosis that we’re aware she’s being glutened. And bizarrely she’s been fine. Hasn’t been sick, no diahorrhea, no stomach pain, no feeling unwell. Which makes me even more convinced when she is having a funny turn it isn’t gluten.

Keep a diary of symptoms to to take to her specialist, and yes ask for a referral.

Also ask for a referral to a dietician for specialist advice.

I have psoriatic arthritis which is a form of auto immune disorder, I also had low vit D, I can't remember the number but it was a single figure, I also have a hiatus hernia and I don't tolerate milk very well.

Strangely I used to also have nightmare periods, flooding, vomiting etc.

Virtual hug for your dd.

Back from seeing the new gastro consultant who agrees that not all the symptoms can be explained by coeliac. He's told us to go the GP and ask for a referral to an immunologist.

Has repeated bloods, given her pots for stool samples and is going to do an MRI. She's already had an MRI but the old hospital haven't sent the report over so he's repeating it. He reckons we've dreamt that we saw in her notes that she had a collapsed terminal ilieum but I know it said she did.

So he seems thorough in some ways of lots of tests being organised but he called me sweetheart throughout which unimpressed me and told dd that at some point she needs to accept that she just may feel ill and there's nothing which can be done about it. That they could spend the next 20 years finding different diseases which she has but at some point she has to realise she doesn't want to be spending too much time in a hospital when she doesn't need to because by the time shes in her 40s she'll be needing to but doesn't at the age of 18! [Hmm]

Hi,

Sorry about your daughter. My cousin had very similar symptoms in her mid to late teens - even ended up in a wheelchair at one point. Turned out to be a severe salt deficiency.

Did she have anything causing the low salt levels such as kidney problems @cantmovewont ?

Because google suggests it's either caused by vomiting/diarrhea or an underlying condition. I don't think that dd's diarrhea is bad enough for that.

I think she’d do better seeing a rheumatologist before an immunologist or else a consultant that covers both.

Has she had bloods done to test her ANA (titre and pattern), anti-DNA etc? The pattern of her ANA can tell you a lot and even if she is currently negative or only just borderline positive (1:80/160) don’t be put off because I fluctuated there for many many years before it became apparent.

I don't think she's ever had her ANA, etc tested so I guess that's the next step. Thanks, will ask GP about the referral. I don't even think out hospital has an immunologist any more as the only one retired!

Your daughter’s GP can arrange the ANA test as it’s a straightforward blood test. It has a distinctive pattern and that in itself can more or less confirm or rule out lupus when combined with symptoms (assuming it’s positive).

Most rheumatologists cover autoimmune conditions regarding joints as well as mixed connective tissue disease etc. Hopefully you can get a referral soon.

I think she just didn't have enough salt in her diet. I'll message her and ask her. They thought she had chronic fatigue. It went on for over a year. She was collapsing all over the place. In the end her mum was wheeling her between classes at college. I think it was a random blood pressure test that discovered that her blood pressure was on the floor. She was on all sorts of homeopathic injections because medical medicine couldn't figure out the the issue.

Hi,

The problem was blood pressure related. She increased her salt intake try and help and was also on a medication called fludrocortisone which helps balance out sodium/ water.

She's actually a DR now and said it's also important to get an ECG and have it carefully reviewed.

She reckons it was just her age and that most people just grow out of it as she did. It was an awful time for her.

Hope this has been a little helpful. I'm sorry you and particularly your daughter are going through this.

Thanks for messaging her and asking, really appreciate it.

DD's blood pressure is OK and she had an ECG last week which was also ok. I'm hoping she grows out of it, that would be amazing.

Haven't read the full thread through but maybe think about asking for her cortisol levels to be checked. I was diagnosed with Addisons earlier this year and had a host of symptoms leading up to this including extreme fatigue, weight loss, joint pain, cramps, hair loss to mention but a few! It's very common for it to occur in patients with coeliac and type 1 diabetes x

Has she had her thyroid levels tested ? Very common to have auto immune thyroid disease alongside coeliac .