Anyone experienced with auto immune stuff know what could be wrong with dc?(138 Posts)
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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.
I think being hypermobile could be relevant. I'd be looking for a paediatric rheumatologist (sorry I don't know any) and ask your GP to refer you.
Has no one mentioned a bowel condition like ulcerative colitis or Chrohn's? Or were those ruled out by the early blood tests? That's what those symptoms suggest to me.
Not sure why you would decline iron as it will 'bung him up' if it might help and also given that he has the opposite problem at the moment? Can some gentler form of iron be prescribed? The standard stuff they prescribe can be hard on the stomach but talk to them about options and consider it.
Hypermobility could be relevant.
Does your DS have any other skin issues?
I know people with EDS (Ethler-Danos Syndromes) - the main thing they all said to me was their joint issues . There are about 13 types of EDS recognised and some EDS have digestive problems as a symptom. Hence you need to mention everything to your GP - make a list before you go to the appointment - and asking for a referral to a paediatric rheumatologist if possible.
Also if he isn't digesting things properly then it's not surprising he has low iron levels. You need to ensure he isn't vitamin and mineral deficient as it will effect his growth.
My son is autistic & we have been told that his bowel problems are part of his autism, he gets chronically constipated or like your son has explosive diarrhoea, he has also been diagnosed with hypotonia, we manage it with movicol for the constipation & diarrhoea capsules to stop the runs.
I would wonder about coeliac disease as it can cause Iron deficiency.
How old is your son? Mine is 15 now & takes gentle iron for the anemia, it doesn't affect his stomach.
He’s 13. GP agrees with me at the moment about not giving iron as she said it may well do him more harm. He’s not clinically aneamic she said his ferratin was at the low end of normal so I think 2 numbers off it? He has a good diet and also takes multi vitamins.
I asked about chrons etc and the paed said that all of ibd etc we’re all ruled out by the bloods?
I’m reluctant to give iron right now when he hasn’t been diagnosed with anything. I don’t want to be potentially hiding a symptom if that makes sense. He’s fine in himself, not tired etc and GP isnt concerned at this stage and said wait to speak to the paed.
I’ve just read about what smaller than average red blood cells mean. Why is GP not concerned about that?
There aren’t any skin issues as such, he gets itchy some times but that’s it. He’s never had any dislocations at all or broken bones.
OP, I am about to try to give my autistic son probiotic to manage his behaviour and also chronic constipation. Have you considered that? My other son has episodes of explosive diahorrea you see, but they are a result of chronic constipation caused in turn by too much lactose or carbs in diet.
He’s had probiotics, good bacteria etc and haven’t made any difference. Well not outwardly.
Unfortunately you need to follow each four week exclusion to the letter to reach a diagnosis. No variations at all. I know it's not what you want to hear.
If the bloods are coming back okay, it's far more likely to be an intolerance or allergy than something auto-immune. I have Crohn's and would expect to see a raised white cell count if inflammed.
The only other thing thar springs to mind is that a lot of products are removing sugar and using sweetners - many people find sweetners have a laxitive effect.
He doesn’t have any sweetners or aspartame etc, none of us do.
Bloods aren’t ok though if he has low ferretin and abnormal under anti nuclear.....
And I am following the exclusion diet, haven’t swayed off it once
I know, but you're only two weeks in to a twelve week run. Also his bloods and general symptoms do not presently suggest auto-immune.
I know it's bloody awful for all of you and if you have to read one more packet you'll want to scream - I very nearly did scream in ASDA some years ago but styled it out as a banged ankle.
And can you call the Gp and ask exactly what the ANA was (that's where the speckled comes from).
It’s a nightmare as he’s moaning so much. The dairy free I can deal with but the wheat free is going to be a nightmare as he does have a lot of wheat based foods so no idea how that’s going to work. He doesn’t want to be on any diet and says he will eat what he wants he wants to be well of course but doesn’t want to be told he can’t eat his favourite foods!
Do you know what the titre was for his ANA? Eg 1:60, 1:1280 etc?
Blood said negative for coeliacs but GP agreed onlyvreally a biopsy can rule it out. She just said it was suggestive of an auto immune disorder as anti nuclear was abnormal ..
I didn’t get any figures as she was sort of talking ‘at’ me. I know something was 47 and lowest normal was 45 but I think that was ferritin.
A proportion of healthy people will have a positive ANA but you really do need to ask what it was. You have every right to have that info.
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