Active discussions

Please or to access all these features

Talk
Autoimmune disease

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Anyone experienced with auto immune stuff know what could be wrong with dc?

137 replies

Ouchmyheadhurts · 31/07/2019 20:10

So my ds has had explosive diarrhoea since January this year. He can go up to 8 times in a day. Some days are worse than others. There is no pattern and have taken a food diary and no pattern there either.

He had stool sample sent off and I was told it was fine, no inflammation. Was referred to gastric paeds and the wait was massive with no appointment given so went back to gp. They arranged another stool sample (fine also) and bloods. Bloods were done and I had a call from the hospital the next day to say he had to be seen within 2 weeks. I got myself all scared and wound up, turned up at hospital for the consultant to ask if any bloods had been taken (despite me telling him we were called in due to the blood results) he said bloods fine, felt his tummy and said fine. He took history of ds and because he couldn’t have dairy as a baby decided it was an intolerance. Was told to do 4 weeks no dairy and then 4 weeks no wheat, 4 weeks no fructose.

Last 2 weeks he’s had no dairy at all. There’s been no change. Still having stomach ache and explosive diarrhoea. I then had a call last week saying some more blood results were in and that he needed to see the gp as his anti nuclear was abnormal. So today went to gp but I’m non the wiser. She said that his red blood cells were ‘smaller than normal’ and that his ferritin was at the low end or normal and that something was ‘speckled’ but she didn’t know what that was and hadn’t seen it described as that?? She said she could prescribe iron but I said I know it can bung you up a bit and I didn’t feel that was wise (he’s also autistic) and she agreed for now as we don’t know what’s wrong with him. She said the bloods indicated an auto immune disease but she can’t say what as it isn’t diagnostic (which I know). These blood results weren’t in when we saw the paed 2 weeks ago. Bloods said negative for coeliacs but i said I thought only really a biopsy could diagnose and she agreed. She has sent the results to the paed to await his opinion. I don’t trust the paed as he was so dismissive and barely looked up from his computer when we were there.

Is there anything they could be missing? He doesn’t have many symptoms of coealics but I don’t know what other auto immune problems cause his symptoms? He is also hypermobile but don’t think that’s relevant.

I’d be greatful for any experience or advice.

OP posts:
Original poster
Ouchmyheadhurts · 13/08/2019 15:21

thanks for answering that. So despite the fact he said to ‘repeat the bloods’ then does that mean he isn’t repeating them??

OP posts:
Original poster
Ouchmyheadhurts · 13/08/2019 15:22

It says under clinical chemistry UE, LFT and hematology says FBC.

OP posts:
Original poster
Ouchmyheadhurts · 13/08/2019 15:22

On the blood form it says that I mean. Oh and sample type VB. does that mean they won’t be testing the Ana again?

OP posts:
yikesanotherbooboo · 13/08/2019 15:31

Yes it doesn't look as if it is being repeated it is an expensive test so the paed would have to justify repeating it. It is possible that if conclusions haven't been drawn a few months down the line that it would be repeated but he/ she has to think about what would be Garden Ned by repeating it.vb is venous blood.

yikesanotherbooboo · 13/08/2019 15:31

GAINED !

Original poster
Ouchmyheadhurts · 13/08/2019 15:35

So what is he looking for if he isn’t repeating them even though he says they should be repeated?

What should it say for the Ana on there?

OP posts:
Original poster
Ouchmyheadhurts · 13/08/2019 16:05

@yikesanotherbooboo are you a medical person?

OP posts:
yikesanotherbooboo · 13/08/2019 21:16

I am medical although cannot claim any expertise here.

Original poster
Ouchmyheadhurts · 14/08/2019 06:26

@yikesanotherbooboo I wont hold you to anything Grin

What should it say on the blood form to include the Ana?

OP posts:
VivaLeBeaver · 14/08/2019 06:30

The big belly/being bloated is typical of someone with coeliac disease who is eating gluten.

Original poster
Ouchmyheadhurts · 14/08/2019 06:48

No one is concerned about his bloated belly. He is small for his age but quite stocky (not overweight!) so his belly does stick out like a beer belly? But there aren’t concerned ....

OP posts:
VivaLeBeaver · 14/08/2019 07:05

Interestingly someone on a coeliac fb group I'm on the other day said she had a negative blood test and a positive endoscopy. So looks like it does happen even if it's rare.

If he goes gf and improves you can always introduce gluten prior to a biopsy. He will need to be eating it for 6 weeks prior to biopsy.......and there's a long waiting list so if they decide to do it you will have time.

But I would really push for the genetic blood test first.

VivaLeBeaver · 14/08/2019 07:06

Coeliac U.K. have a free helpline as well and they may be able to give some useful advice.

Original poster
Ouchmyheadhurts · 14/08/2019 07:18

I have a phone apt at the gp this Friday about the repeat blood. Can they do the genetic one just like that? Won’t they need a reason to? No one in the family have coeliacs?

OP posts:
Original poster
Ouchmyheadhurts · 14/08/2019 07:26

I know that if I put him on a wheat free diet and he got better there is no way they would check for coeliacs due to the blood test..... interestingly the diet sheet says he can have oats and rye etc and all the other things you don’t have if coeliacs....

OP posts:
Original poster
Ouchmyheadhurts · 14/08/2019 13:01

He says often gets no poo but ‘pure mucous’ coming out. Iv seem the mucous so he’s using the correct term so knows what it is.....

OP posts:
jollyohh · 14/08/2019 14:03

I get the mucus only situation when I accidentally eat gluten for long periods. I was using a lipstick daily that had gluten in but didn't realise for months. It's caused irritation to the bowels, diarrhoea that I could barely hold in and mucus. All from a lipstick!

Who is the phone consult with?

Original poster
Ouchmyheadhurts · 14/08/2019 14:43

Wow a lipstick?!? Sorry I had no idea how badly it could affect you (as I’m not just food).

It’s only with the GP to check the Ana is being repeated. I want them to check what’s on the form as PP said it hadn’t been included? Bloods are on Monday.

OP posts:
Original poster
Ouchmyheadhurts · 14/08/2019 16:06

Maybe I’m clutching at straws with the coeliacs... I don’t ‘want’ him to be ill of course but I hated the way the paediatrician was to him and to me and just fobbed us off. I just want him well again.

OP posts:
jollyohh · 14/08/2019 16:42

The lipstick thing was 8 years after being gluten free, before then I ate gluten normally and had far fewer reaction which is why it's important not to remove gluten before diagnosis. When people cut it out, then try to reintroduce for the 6 weeks, they can become too ill to complete it and are then left in limbo. I was essentially lick gluten all day long for weeks, hence the tummy trouble.

Obviously no body want to have an autoimmune disease but if you do have one, it's better to be on top of it. Once you have one autoimmune issue you are more likely to get another. Poorly controlled CD leads to its own health implications.

The association between autism and CD is mixed. You may want to read around it a bit. You can ask the gp re: genetic testing but I suspect it would be the gastro peads that would request it. I would contact coeliac UK to discuss the blood tests and false negatives. They are v helpful.

Original poster
Ouchmyheadhurts · 14/08/2019 16:48

Thank you. Do you know what an abnormal Ana means? Apparantly it should be either negative or positive and no one can shed any light on it, not even the doctor.

OP posts:
VivaLeBeaver · 14/08/2019 16:59

Yes, if you can go to GP armed with info from coeliac UK about false negative blood tests they may listen more.

Original poster
Ouchmyheadhurts · 14/08/2019 17:00

It’s the GP who is listening, it’s the paediatrician who isn’t and there are the ones to do the biopsy... paediatrician doesn’t think there’s anything wrong

OP posts:
Original poster
Ouchmyheadhurts · 20/08/2019 17:16

So my gut was right not to trust the paed, he HAD missed off the Ana on the blood test so gp re did the blood forms and he had them done yesterday. Today is first day wheat free..... he has a really bad belly today.

I contacted the coeliac society and they agreed about false negatives and said how you have to have wheat in at least TWO meals a day for at least 6 weeks (same for be biopsy) and he wasn’t having that much. He definitely was having it every day but generally just breakfast. So I’m going to wait for blood results which could mean up to 3 weeks, in the mean time he is wheat free as per paed instructions but he is still having oats, rye, barely etc as was told not to exclude those. The whole situation is so draining and I just feel so sorry for him. No one can answer why his Ana was abnormal instead of positive or negative still.

OP posts:
yikesanotherbooboo · 20/08/2019 20:09

Poor little boy; I'm glad that blood has been taken and that you are working your way through the exclusions.
I have seen several ANA tests come back as speckled and the patients have not had autoimmune diagnoses so I wouldn't particularly worry about it. Much more important are signs of malabsorption eg low iron, anaemia, weight loss. It is very frustrating but medicine and diagnosis is often not clear cut and tests aren't always the be all and end all. Best of luck , Jane