Is anyone awake? I’m expecting bad news and I can’t sleep

[MyCake]

My dh is unwell and we have no idea what is wrong. We are getting scan results this morning but they were only to rule things out so probably not conclusive. However, I can’t see how this isn’t going to be something serious as he has declined so rapidly.

I feel sick. We’ve already lost most of his income through him being off work so I’m also worried sick about money. We have enough savings to manage another 2 months at the most.

My dc are already suffering, despite them
mot fully understanding how serious the symptoms are, as dh is pretty much housebound and I can’t physically drive them to all the clubs and places they need to go by myself.
I also work full time although thankfully I’m a teacher and break up this week.

My heart is broken just looking at him disappearing in front of me. The doctors are slow to take his symptoms seriously so sadly by the time he was sent to hospital he was already unable to work and very ill. It could of course be something very treatable but at the moment I feel suffocated with the fear of the worst case scenarios.
I am writing this as I’m lonely and scared and wondered if anyone is awake to say hello.

I have name changed in case anyone recognises me from this post. If you do, please don’t mention this as I am doing a great job of appearing strong on the outside.

Exactly, which is why I said a working diagnosis, and 'at this time', and that the picture can change as the pattern of an illness is shown over time.

Anyway it's enough about my situation. I just wanted to show some support for the op having been in a remarkably similar position a year ago. I wanted to share some things that I've reflected on and I shouldn't be dragged into discussion on any conditions as none of us are there looking at or treating her dh.

Mycake, I'm sure will continue to question and seek answers as she comes across as being very successful so far in being an advocate for her dh.

I am so sorry that mentioning FND has caused such a discussion.
The doctor hasn’t actually mentioned FND in relation to dh but I know 2 people who have been diagnosed with it. For one of them it fitted their symptoms very well (seizures/spasms) and they have improved with treatment. But the other one feels it was a diagnosis just given after eliminating other things, which is my fear for dh.

Obviously if that is what dh has then we will accept it but I am hoping they explore other things first. It has been a constant decline, not episodic, and there are definite physical symptoms such as lumps, high inflammation markers, protein levels raised etc.

They are now looking at coeliac disease. 3 of his family have it but it doesn’t show up on their blood tests. They’ve needed biopsies to diagnose so the consultant is pursuing that now with an initial
blood test and then hopefully endoscopy.
Coeliac disease can affect the lymphatic system and have neurological symptoms so it’s a possibility.
I have also mentioned B12 which has been mentioned on this thread a few times. The consultant says he is going to throw everything at dh to try to find answers. He also said there are not always answered and he is as frustrated as we are.
He is seeing dh on 20th for a full
review of his neurological symptoms and also referring him to gastroenterology.

I really hope you get answers soon @MyCake . I am sorry for the digression, I sympathise with your fears. I think you are doing a great job of supporting him

My friend's son was diagnosed with coeliac after developing myositis. Again doctors had told her for years there was nothing wrong with him - coeliac hadn't shown up on blood tests but it did show up on biopsies
It must be gruelling going through all the testing but it is worth persevering

Coeliac disease would be a big win.

I can't imagine the rollercoaster you are on, OP.

We get hot under the collar, those of us with the chronic illnesses that are exclusion diagnoses! Personally I live in a zone of swinging between trying a new multivitamin complex/diagnosis on for size, and accepting 'this is it,make the best of it!'.

Someone in my family got diagnosed with coealiac's only in their sixties and they were so ill we really thought we were going to lose them before the diagnosis. Good that the consultant seems determined now.

CD would make sense, especially with family members having it. I have it and when I’ve been glutened I feel like I’m dying, so tired and fuzzy headed, pain all over and night sweats.

The neurology consultant has moved quickly and rang dh up today with an endoscopy appointment soon.
Dh looks very grey today and his eyes are bloodshot.

I realise I didn’t answer the post about a possible ED. He isn’t eating due to nausea but he has actually started eating more in small portions throughout the day so has put a few pounds back on. He is still much thinner than normal but it was a relief that he is no longer under 10 stone!!

If it was CD, surely him not eating anything with gluten in it would see a big turnaround. So I don't think it's that, unless OP is still giving her DH food with gluten.

Have you tried giving your DH absolutely nothing whatsoever with gluten in it, @MyCake ?

I don't think that's a good plan before the biopsies @IAmWomanHearMeRoar1 I think eliminating now could lead to false negatives

He has cut out gluten and he is eating better and slightly less nauseous but the other neurological symptoms are no better. It’s only been 4 weeks.
I assume he will need to reintroduce it before the blood test though.

@SweetSakura I am worried about that now. I don’t think dh told the doctor he’s cut out gluten 🤦🏼‍♀️

@MyCake I don't want to claim to be definitely right about that but I would definitely seek urgent clarification from the doctor.

It's only from talking to a couple for friends who had coeliac diagnosis recently (one for her son, one for herself)

nationalceliac.org/celiac-disease-questions/diagnosing-celiac-disease-after-going-on-a-gf-diet/

This is an American site, but advice is not to cut out gluten pre-investigations. I had also heard this from friends undergoing tests and from when I used to work with gastroenterologists.

My DD has CD and we had to keep gluten in her diet up until we had the blood tests done and the biopsy, I would double check this was 3 yrs ago and may be different for adults

Hope you get some answers soon

Restart the gluten and check with the consultant. For tests to be successful follow a normal diet, I was told the equivalent of 2 slices of bread per day. I recommend something he enjoys in case it is confirmed coeliac.
Coeliac disease is diet controlled but after diagnosis and following a gf diet it can take awhile for symptoms to reduce/stop.
Coeliac is an autoimmune disease not just an allergy.
The neurological symptoms were a complete surprise to me before I was diagnosed www.coeliac.org.uk/information-and-support/coeliac-disease/conditions-linked-to-coeliac-disease/neurological-conditions/

I hope you get answers soon and treatment for whatever it turns out to be so your OH can feel better and then you can too.
Sending lots of good wishes your way x

If he hasn’t been eating gluten he will get a negative blood test. You need to eat gluten daily for six weeks beforehand.

The most common neurological symptoms in people with coeliac disease or gluten sensitivity are ataxia and neuropathy. Ataxia includes clumsiness, loss of balance and uncoordinated movements leading to a tendency to fall and slurred speech. Neuropathy causes numbness and tingling, usually affecting feet and hands, but it can affect other parts of the body. Other neurological symptoms can include headaches, sometimes associated with “foggy brain”, slow thinking and cognitive difficulties.

@MyCake are these some of the neurological problems he's experiencing?

I’m not a medic but I’ve never heard of Coeliac producing symptoms of DH’s severity. If he tests positive I think it’s more likely to be co-morbid with another auto-immune disorder than the sole cause.

My friend's son was seriously ill just as a result of undiagnosed coeliac - in hospital for months

Interesting - what were his symptoms.

If you look at the link I posted not too far back to coeliac uk, it will give you some insight.
Please don't try to explain or dismiss something you don't understand without having actually looked into it.

Potentially this could be a glimmer of hope for mycake and her husband. If coeliac is the diagnosis I can only assume that it would be a relief for them.

My young male cousin had coeliac in his early 30s took forever to diagnose.
He faded away to an alarming extent. His parents thought he would die.
Once diagnosed and treated he became 100% well again