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Autoimmune disease

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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:
Ouchmyheadhurts · 20/08/2019 20:24

Thank you Jane. It’s so hard as I don’t seem to be able to help him and it’s been so long now!

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yikesanotherbooboo · 20/08/2019 20:48

I totally understand, you are an excellent advocate for him though

LaBelleSauvage123 · 20/08/2019 21:00

I really feel for you. My son is 16 and autistic - we are lucky in that his paed always considers medical reasons for issues, but a large number of my friends have been told ( or its been implied) on various occasions that it’s part and parcel of autism and as such there’s no point worrying or treating 😡
We put our son on a gluten and dairy free diet when he was 4 - he had had frequent diarrhoea from about 18 months, with severe eczema and asthma. He also had the bloated belly. Removing gluten had an almost immediate positive effect on his bowels. He has a very carb heavy diet but we’ve found some good gluten free alternatives. It’s not as hard as it seems initially ( though he only has an intolerance and I’m well aware that if he was coeliac it would be much harder).

EggysMom · 20/08/2019 21:16

I know you've mentioned pro-biotics, but have you considered pre-biotics (e.g. inulin) to help develop a healthy gut?

Ouchmyheadhurts · 21/08/2019 08:42

I can’t remember what ones we have tried, pre or pro biotics. I need to check which ones. I went to the health shop and they gave me advice so I didn’t just buy one from Tesco....

Gave him a wheat free bagel for breakfast as that’s his current favourite and he ate half of it.... more than I expected to be fair!

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Ouchmyheadhurts · 26/08/2019 12:23

Sorry I’m back again. Now awaiting blood results. I spoke to a nurse and apparabtly his Ana was 1:1000 but I have no idea what that means and neither did she. Does anyone know?

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Ouchmyheadhurts · 01/09/2019 18:13

He now has a prolapse Sad

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UpTheLaganInABubble · 02/09/2019 12:18

Hi OP, I've no idea about the latest ANA result, sorry, but prolapse in young people is another sign of a Hypermobility disorder. You might be best pushing for a diagnosis of it, as that might make them take other problems more seriously once they realise there's an underlying cause. I don't have much faith in doctors in this area and have yet to find one who knows enough about it, but I'm in NI. If you're in GB then hopefully you won't have as much of a problem with diagnosis... there are actually clinics in England specifically for Hypermobility disorders

Ouchmyheadhurts · 02/09/2019 12:36

Iv really had enough of it all now worries and it isn’t even my body. Went to GP today but because they haven’t had the info from the out of hours at the weekend (despite them telling me it goes electronically instantly) they can’t yet go back to hospital Hmm she is awaiting the letter and then refer back to the paeds. They said to do send off another stool sample today which we’ve done but they’ve never shown any signs of inflammation which doesn’t make any sense. Still waiting for the second ANA result but the rest of the bloods are all normal.

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cathyandclare · 02/09/2019 12:58

They really need to check the inflammatory markers again. The diarrhoea, mucous, blood and prolapse really sound like Ulcerative Colitis. Who saw him for his prolapse? Are they being proactive and taking control of his case?

Ouchmyheadhurts · 02/09/2019 13:04

That’s why we’ve done another stool sample today to check again but they were fine on last 2 times, a few months ago now.

No that is my point no one is giving any answers or any pro active solutions. We’re all just sitting waiting! And waiting. Then waiting for someone else.

The paed said he does not have chrons, UC etc etc due to his blood and stool results and I should be ‘greatful’ which of course I am but that doesn’t help my son. All the paed have said is do this restriction diet which Iv done dairy free, no change, do wheat free which we are half way through and then low fructose. No change at all so far

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Ouchmyheadhurts · 06/09/2019 07:01

Third stool sample and all clear yet again?!

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