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

[Ouchmyheadhurts]

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.

But what about his red blood cells being smaller than average? From what I googled can mean anemia?

Well that sounds like a low MCV which yes is a type of anaemia which can be iron deficiency. But I've never seen an MCV result not come back alongside a Hb result, odd. Hb is part of the Full blood count, as is the MCV. But appreciate it could be different in different areas/labs?

No idea what you just said there morgue

The staining pattern was speckled!!!! Iv just worked out what she said about the ana, that the staining pattern was speckled. Anyone know what that means?

@Ouchmyheadhurts As far as I remember, untreated SIBO can lead to an abnormal ANA but I'm not 100% on that. It can lead to a lot of other problems if left untreated. Unfortunately it's not as easy to treat as the NHS would like to think... it can take years and antibiotics don't always help. I've had 3 courses and still have symptoms, so am waiting to be tested again. But I have Joint Hypermobility Syndrome (JHS) so may always be susceptible to it because of that. Your son may also have JHS as opposed to EDS.

Lactose intolerance is diagnosed by breath test, but it is a different one from the SIBO test.

Coeliac can't be ruled out by blood test, it is notoriously inaccurate. A biopsy is more accurate, but even then not 100%, as it relies on biopsies being taken from damaged tissue. It's important to keep eating enough gluten until the biopsy.

Oh god what a nightmare.

We have 2 more weeks of no dairy and then it’s no wheat. GP said to keep with it (which I am) but if he goes no wheat and paed says do biopsy it won’t be accurate anyway... maybe I’ll worry about that in 2 weeks???

I have no idea what he has in terms of the hypermobility, it’s not diagnosed as such, a few years back when he was having an OT assessment she said he was due to how ridiculously bendy and flexible he is and the problems he has holding a pen and writing.... but don’t know if there’s anything else there.

My son was like this also autistic and hyper mobile , it was a blockage in his bowel all the way up paediatricians gps etc all missed it for 9 months , ask for a Scan ! We also had all the bloods stool samples etc x

Ok so a paediatrician just rang me.... said they aren’t that worried about the results. Said have bloods re done in 2 weeks.......

And there ‘too Busy’ to arrange a breath test

*they’re

Also what do I do at the end of 4 weeks no dairy? Stop wheat and still no dairy? So he has no wheat OR dairy or do I put him back on dairy and just no wheat??

Hi it's still possible that he has coeliac despite the blood test. If he's not eaten a lot of gluten it won't sure in the blood tests unless they test the genes. These will be conclusive that he has a predisposition for it. They would still want to do a biopsy though for a clinical diagnosis.

The paed isn’t bothered about the results though? Iv booked him in in two weeks time to have them rebooked. My issue with this is it took over 3 weeks for the anti nuclear result to come in so that’s potentially another 5 weeks of not getting anywhere and him suffering...

I'd be really unhappy with that tbh, think I'd be looking a second opinion. Especially when it's a child

I second asking for a scan OP. It’s not good enough that he’s having all these problems and all they’re saying is that bloods are fine. At least you could eliminate a mechanical gut problem if they do a scan.

The paediatrician who rang me wasn’t the one who we saw. He was a gastro paed but not ds’s one. I’m not happy with it but when I spoke to the GP earlier (before speaking to paed) she said she had done the right thing by referring the blood result to the paed and that they are the best person. I’m going to see what he’s like next week I think and go back to her if it’s the same. Bloods aren’t booked in for another 2.5 weeks, he can’t go on for another potentially 5 weeks with still no answer or at least nothing being planned. His follow up is in a YEAR! I get they are ‘busy’ it’s the nhs, we’ve spend years on various waiting lists but this isn’t fair on him. I wouldn’t be happy as an adult this happening to me but for an autistic kid who already has mental health problems and on medication for anxiety which is being exasperated (right word?) by all of this, it isn’t on.

What scan would I be asking for? I can’t see them willing do anything just because Iv asked.

Mechanically though what could be wrong that would show on a scan? I thought symptoms of an obstruction would be vomiting and constipation?

It was an X-ray my sons showed on , it wasn't even for that 🤦🏻‍♀️ my son showed no signs he has a high pain tolerance , he was constipated but because the blockage was there the runny stool was running down the sides of said blockage iyswim

It was an X-ray my sons showed on , it wasn't even for that 🤦🏻‍♀️ my son showed no signs he has a high pain tolerance , he was constipated but because the blockage was there the runny stool was running down the sides of said blockage iyswim

That makes sense. Just because the paed has felt his stomach he says it’s fine 🙄 interestingly, today he hadn’t gone at all this morning and my lunch time had bad stomach ache. Mid afternoon he went and he said it was quite painful and was quite hard. He also said half of the poo was white/see through. I didn’t see it as he’d already done it. Very strange how yesterday he went I think 6 times runny and explosive and then suddenly today looks like he’s now constipated???

It’s so strange. It’s alternating between him being what he’s calling constipated, which I think just means the poo is harder than he’s been used to (he’s calling it like burger meat?! ) and then too soft..:

He’s complaining of a bad taste in his mouth. Yesterday he said it tastes like poo and extra teeth brushing didn’t get rid of it so of course that really worried me. Today I asked him if it was still there and he said yes but couldn’t say what it tastes like... other than stomach ache he’s ok in himself. I can’t get his blood test brought forward at all.

He’s just had blood in the poo.... I haven’t seen it as he flushed as we have someone visiting. Should I be doing something?! Can’t get hold of any doctors to talk to...

Anyone?