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Experience of Chrons, coealiacs or bowel disease?

(67 Posts)
Wonderingwhyme Fri 10-Jan-20 13:04:24

Firstly apologies if any of those are spelt incorrectly. I just wanted to know if anyone has any knowledge or experience of any of those?

My 13 year old has been ill a year now. Poor care from a useless paediatrician (can’t be seen by anyone else as waiting lists too long) don’t want to drip feed but don’t want to make it too long but this is briefly the problem.

Started with awful diarrhoea. Then pain. Went on a while, very bloated. Stool sample all clear. Bloods clear other than low iron. Waited for paed. Then told it’s diet, followed 4 weeks off dairy, then 4 off wheat, then 4 off fructose. No change other than less pain on no wheat. Went back, did X-ray showed impaction, then found out he has a prolapse. Had movicol then failed op to repair prolapse

Left again by paed but chased the last stool sample done which was ocotober then showing calprotectin levels of 349, GP went back to paed demanding look into it.

With me so far? So he is booked in a few weeks to have small bowel mri plus OGD. I don’t trust the paed at all and don’t want him missing something and want him to take biopsies (still haven’t clarified this)

Symptoms are :

Constant mucous that comes out both with stools but on its own and he thinks he needs a poo but is just mucous. Very windy (both ends) gets pain but not as bad since the movicol. On the toilet up to 4 time’s a day. Tummy very distended, looks like a beer belly. Hasn’t lost any weight tho. Low iron (hasn’t been checked for ages) generally quite tired but ok. (He has SN so this isn’t helping). Still has the prolapse which bleeds. (Well I’m told it’s the prolapse bleeding as apposed to blood in the poo). He always has bruises but he is hyper mobile and quite clumsy and he doesn’t know where they come from. Not loads but he will always have generally one that looks quite bad on him. I don’t believe he has grown much at all in the last year or so (need to check with hospital as I only have this written done twice recently and they don’t write in his red book). Has been suffering reflux for the last 2 months and Gp has given gaviscon.

He had a breath test and that was negative. He was tested for that hylocampbactor or what ever it’s called and that was negative.

The calprotectin obv shows high inflammation and the only things that come up on google are the above mentioned. Blood for coeliacs came back negative but coeliacs society said that you can have false negatives and the GP agreed.

Any experience or any thoughts on what it could be and how these things are diagnosed and treated? I know no one can diagnose him on here but I’m very worried about getting no where and want to go armed when we go into hospital.

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TamingToddler Fri 10-Jan-20 13:26:39

No experience with the others but DP has Crohn's disease. Calprotectin levels fine, but stool samples etc usually come back clear. Doesn't mean he doesn't have Crohn's, just means it's not flaring up. Mucus in stools is a MASSIVE indicator of inflammation, he got diagnosed at 9yo after being poorly for a long time. She demanded they did a blood test to check for Crohn's, it is just a simple blood test but unless they're looking for it actively they won't see it. You have to really push for it.
The prolapse, is another sign. Tiredness too. He was told it was a 1 in 10000 chance and he probably won't have it, but he does and then he was able to get it managed.

Have you removed fibre from his diet?

AvaSnowdrop Fri 10-Jan-20 13:28:31

It won’t be coeliac if the blood test was clear. It would have shown up on the test.

Wonderingwhyme Fri 10-Jan-20 13:30:24

Thanks for replying I appreciate it.

I’ve had no advice whatsoever, just left! No haven’t taken away fibre. I don’t want to as he was compacted and told by the surgeon who did the prolapse surgery that he had been for quite a long time, or certainly had been in the past as the area was ‘saggy’.

I’m already really upset by that as from when he started school he was ‘soiling’ and due to his anxiety and autism I was told for YEARS there was nothing wrong and that it was about ‘control’ and was linked to his anxiety. I now know that was rubbish and that he must’ve been compacted (every few months he wold be in excrutiating pain) and the ‘soiling’ was over flow.

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Wonderingwhyme Fri 10-Jan-20 13:31:08

*@AvaSnowdrop coealics society said you get false negatives and only a biopsy can the true way to rule it out if you have symptoms.

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Toomboom Fri 10-Jan-20 13:46:42

My son was diagnosed with crohns when he was 8 [ now 19 ]. It took me over two years to get a diagnosis as we were fobbed off by the GP countless times. I had to up his fibre as the GP said that was the problem. That just made things worse and my son was in far more pain.
Bloods never show anything for my son. Calprotectin is what shows his inflammation. Your sons calprotection is on the high side. We have always been told anything over 50 is high.
Are you certain that it is a prolapse that your son has and not a fissure? My son had a fissure which was very painful.
Mucous is a big indicator of inflammation. My son was extremely tired and had foul breathe!

Has he had colonoscopies done? An MRI for my son didn't show up anything, but the colonoscopy showed massive inflammation in his large bowel and digestive tract. He also had massive ulcers all over his bowel too - no wonder he was in so much pain!
The only way they found he also has crohns in his small bowel was to do a camera test. This is where a small camera is put in a pill and swallowed and makes it's way through the body over a number of hours.

You need to keep pushing for tests to be done. If you aren't happy with who you are seeing ask to be refereed to someone else.

It is a horrible position to be in trying to get help for your child and getting no where. I have fought so hard for my son over the years with medical people.

We are now over 10 years down the line and he is doing well on medication and has a full time job smile Good luck. PM me if you want to chat.

Wonderingwhyme Fri 10-Jan-20 13:50:02

Thanks @Toomboom* he is having an OGD in a few weeks. He has mri of the small bowel a week before. They wanted it day after but I refused due to the process of both meant no food for 48 hours and his anxiety would not cope with in and out 2 days in a row etc. I’m scared the paed will just say yeah there’s inflammation and that’s it. No diagnosis, no treatment etc.

It’s definitely a pro lapse. He had surgery to fix it and the surgeon had the camera so was confirmed a prolapse.

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Apileofballyhoo Fri 10-Jan-20 13:56:06

It won’t be coeliac if the blood test was clear. It would have shown up on the test.

That's not true.

When did he have the test for coeliac disease? If he was off wheat at the time it would have affected the test.

Low iron, tiredness, bloated stomach, constipation/impaction scream coeliac to me, as does improvement when wheat was cut out of diet.

There's something that can be checked for in bloods that might indicate why the anti gluten antibodies weren't there but I can't remember what it is called. There also has to be sufficient gluten in the diet for a positive result on blood tests although a tiny amount of gluten is enough to upset the system.

Wonderingwhyme Fri 10-Jan-20 13:59:04

He definitely wasn’t off wheat when he had the bloods as even back then it was on my mind. I know if you are intolerant to something you need to be off more than 4 weeks as it takes a long time for things to leave your system but the Wheat free period, symptoms still there but he definitely had less pain.

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SigridTheHaughty Fri 10-Jan-20 14:04:59

IgA deficiency is more common in coeliacs than the general population, and it causes many of the blood tests to come back false negative. There are extra blood tests they can do, but you need the results of endoscopy and response to a GF diet and maybe even a gluten challenge to be sure. But you need to be eating gluten the whole time they're testing (except when doing the GF diet part).

Wonderingwhyme Fri 10-Jan-20 14:08:15

What’s a gluten challenge? I can’t see them agreeing to do anything ‘extra’ as the paediatrician is adamant nothing is wrong!

If I get nothing from then mri and OGD from the paed I will be making a complaint. Trouble is (having spoken to the GP who also agrees the paed is wrong) that my son would have to go back in the system and would take a while for someone new to take him on. The current ‘normal’ gastro wait at our children’s hospital is 37 weeks!

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Apileofballyhoo Fri 10-Jan-20 14:09:59

How much wheat does he eat?

If he does have coeliac disease he may also have a secondary lactose intolerance, that may or may not go away if gluten was cut out of his diet.

Some people can't tolerate gluten free oats either.

He should have an endoscopy. Coeliac disease can't be ruled out by blood tests, it can only be confirmed.

Apileofballyhoo Fri 10-Jan-20 14:11:22

A gluten challenge is when a person has been following a gluten free diet and then reintroduces gluten to see if it has a negative effect/get tests done.

SigridTheHaughty Fri 10-Jan-20 14:11:34

A gluten challenge is when you go off gluten for a while, get better, then you start eating gluten again to see if it makes you worse again. They don't usually bother with it any more.

Wonderingwhyme Fri 10-Jan-20 14:13:15

He does it wheat/gluten every day. For breakfast he has Cheerios or shreddies or a bagel, lunch is mostly at school but a cooked meal, at home I cook evening meal and pasta in some form twice a week (I can’t eat a lot as get belly ache) but will probably have gluten in it (gravy granules or in a sauce or cornflour etc) most days I guess? Don’t eat a great deal of pudding ever at home but they do at school every day. He can’t take a packed lunch to school as meals are included but if he was diagnosed with coealics it won’t be a problem for them to adapt as I know another child there is.

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Ifixbrokenthings Fri 10-Jan-20 14:14:09

He will probably get biopsies with his OGD. That is fairly standard. I've UC myself, whole family have crohns bar one parent. No diagnosed coeliacs in there but I FODMAP every few months for 3 weeks if I start to feel unwell or my stomach plays up(Exclusion diet, you'll see it on the Internet but may not be suitable for your son if he is very limited in his diet anyway??) my blood tests and biopsies for coeliac disease were negative but I find that minimising gluten and onions/garlic etc has helped greatly.
I hope he gets sorted soon. All of us were diagnosed with our IBD following red flag symptoms which led us to urgent colonoscopies.

MissElizabethLinley Fri 10-Jan-20 14:14:10

This is a long shot, but, has he always had a history of constipation?Maybe you should also consider Hirschprung's disease if you haven't already. Milder cases aren't always picked up in babyhood/early childhood, particularly if only a tiny segment of bowel is affected, I think. Even that is enough to cause impaction and the impaction can then cause a lot of other problems, including inflammation as you describe.

I know it's tricky when waiting lists are so long, but can you ask to be referred to a paediatric gastroenterologist as opposed to a regular paed? It might be worth the wait, given that currently he isn't getting appropriate treatment anyway.

SigridTheHaughty Fri 10-Jan-20 14:16:00

I hope they'll be doing the right biopsies etc. for coeliac disease as part of the endoscopy? You need a certain number of samples from particular places.

Wonderingwhyme Fri 10-Jan-20 14:16:53

The paed is a gastro paed! It’s him doing the OGD!

Iv heard of hirshprungs disease as both dc had reflux as babies and on meds. He had bad reflux until about aged 1, he would projectile vomit a whole bottle despite special prescribed formulas and medications. I know he was tested for that other thing that they look at on a barium X-ray. I can’t remember what it’s called? The muscle sphincter thingy.

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SigridTheHaughty Fri 10-Jan-20 14:19:20

I diagnose your paediatric gastroenterologist as a dick.

MissElizabethLinley Fri 10-Jan-20 14:21:59

Another few questions:
Has he got some sort of connective tissue disorder? There are a few flags in your post - bruises, clumsiness, hypermobility and a prolapse - and it's linked to certain types of bowel problems.
Have you talked to anyone about the bruising?
Have you discussed cutting the fibre right down and upping the movicol? (Disclaimer, I'm not a doctor and wouldn't do this without discussing it with your GP, but the fibre can cause a lot of problems- I speak from experience - and you can use the movicol to mitigate the negative effects of cutting the fibre out).

Wonderingwhyme Fri 10-Jan-20 14:22:31

@SigridThehaughty* I diagnose that too! I spoke to the admissions people and they said it’s only down as OGD and no mention of biopsies. I spoke to Gp who said they don’t routinely take biopsies as it’s an infection risk. I get that but he needs them. Currently awaiting paed secretary to get back to me to tell me!! Not holding my breath with current experience of her! Had to go through PALS to get the appointment with the paed where it showed the impaction in October!

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HildaSnibbs Fri 10-Jan-20 14:25:19

My niece has ulcerative colitis. I can't remember all the medical details but the main symptoms were blood and mucus in her stools. She was diagnosed after a colonoscopy. I do know that the charity Crohn's And Colitis UK was very helpful for my sister (her mum). I think they have a helpline, and it's worth looking on their website or ringing them for some advice, might be helpful. Wishing you luck and hope your son improves soon.

MissElizabethLinley Fri 10-Jan-20 14:25:50

Just saw your other message - that's a shame. I would do my best to move to someone else, however difficult.
Hirschprungs can still be missed even when it was previously considered, so it might be worth asking whether it's a possibility now.

Wonderingwhyme Fri 10-Jan-20 14:26:12

@MissElizabethLinley I have no idea. I spoke with the OT a while back when he was being assessed and found out about the hyper mobility and bruises and she wasn’t concerned, been mentioned to gps and no one is bothered. Him and I joke ‘what bruise have you got today?’ And he laughs. The bruises don’t hurt and He always says he doesn’t know how he got it as hadn’t hurt himself. The bruises go very dark like he’s had a significant bang? But they don’t hurt him to touch them. He doesn’t have loads, but will always have one, current one is on his thigh.

Got no sense from paed about movicol, I was just told if he doesn’t have a poo for two days give him movicol. That’s it! He hasn’t had movicol for ages as he is going. Some days he says it’s normal poo, other days he says it’s fluffy and other days blobby. Can’t get much sense from him and he’s fed up me asking him.

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