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Autoimmune disease

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Could coeliac be the link?

7 replies

FloatingthroughSpace · 15/05/2019 19:36

My 12 year old ds has had intermittent loose stools and urgency since he was a baby. Every month or so he has an afternoon of rushing to the loo repeatedly. The rest of the time he tends to splatter the bowl (sorry tmi) and have urgency. As a baby his poop was never sausages or Play-Doh consistency like my other kids, but more like porridge. Often there was lots of mucus. I went to the doctor with him and he was tested twice for coeliac at about 2 ish and about 5 ish, but nothing was found. He is well grown. We use lactose free milk as we find it suits him better and seems to reduce his belly pain, but it doesn't solve the issue completely.
18 months ago he was diagnosed with an autoimmune blood condition called itp. This is low platelets as the spleen starts attacking them. Most children resolve spontaneously within 6 weeks; ds' did resolve but it took a year. He has just had a follow up test and his platelets are ok but they have now found his bloods looking at liver function show that his liver is probably stealing calcium from his bones and so they think he has low vitamin D, though he does take a multivitamin. He also, of my 4 kids, was the only one who has terribly soft teeth which have lots if cavities. None if his 3 sibs have any and he has multiple including in adult teeth within 2 years of coming through. He eats no more sweets than his sibs and we no longer buy fruit juice. He hates fizzy drinks.

Adding it all up I have asked the doctor if they will do another coeliac test, they said yes but I am worried the bloods will be negative again. Is there a particular test I should ask for?

For context 4 members of my family are diagnosed coeliac - my sibling, my cousin, a different cousin on same side's 2 children. My dad thinks he is coeliac too but never been tested. Lots of hypothyroid as well.

OP posts:
Buddywoo · 15/05/2019 19:43

I am coeliac and so is my daughter. It tends to run in families. It sounds as if he could be too so save the blood test. It doesn't always show in the blood so you could go privately for an endoscopy. My daughter was diagnosed that way after the hospital lost her bloods twice.

Buddywoo · 15/05/2019 19:44

have not save

sar302 · 15/05/2019 19:49

It does sound entirely possible. If he's having the coeliac test, he needs to be eating gluten at least 2-3 times a day for 6-8 weeks beforehand, otherwise you might get a skewed result.

sar302 · 15/05/2019 19:50

Oh, and your dad should get checked - there are unfortunately a number of possibly severe health complications for coeliacs if they continue to eat gluten

FloatingthroughSpace · 15/05/2019 19:56

sar he strictly avoids gluten, has for 15 years. No grains at all except rice. He would never eat it in order to get tested. Honestly, we are skeptical as all the identified coeliacs are on my mum's side. But if he is, he is certainly not risking getting glutened.

My concern is, wouldn't something have shown in the previous 2 tests?

OP posts:
FloatingthroughSpace · 15/05/2019 19:57

Sorry - I mean if ds was coeliac wouldn't something have shown in the bloods when he was little?

OP posts:
sar302 · 15/05/2019 20:00

Ah! Fair enough. In that case he's fine.

Re the blood tests, honestly I think the "gold standard" these days is considered to be the endoscopy. I had a colonoscopy thrown in for free too 😬

If you have concerns I would push for the endoscopy. They can do it under conscious sedation, so there will likely be no discomfort. I don't even remember mine!

(Remember the colonoscopy though 🙄)

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