Experience of Chrons, coealiacs or bowel disease?

[Wonderingwhyme]

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.

Ok, can you ask for a referral to a bowel nurse? You should be able to get one to run concurrently, you don't have to be discharged from the consultant to get it. My experience of movicol is you have to be consistent for it to work, not just use it from time to time when it seems to be needed.

If you're looking into connective tissue disorders, start with Ehlers-Danlos Syndrome at www.ehlers-danlos.org. Classical EDS causes bruising. See also this article on bowel disorders in children with EDS: www.ehlers-danlos.org/information/gastrointestinal-problems-in-children-with-ehlers-danlos-syndromes/
I notice they suggest that 'as and when' treatment with movicol is unlikely to be effective - this fits my experience. I have what's probably hypermobility EDS and also have complications resulting from a previous bowel resection for something else - I'm on Movicol permanently as a result. In my case, fibre doesn't work, in contrast to the suggested approach in the article. I do find you have to be very careful with chronic constipation because unfortunately it's causing all sorts of damage you can't see, which then leads to other problems.
I'm sure this is true whether it's caused by previous surgery, EDS, Hirschprungs, Crohns or something else entirely.

Who would I ask for a bowel nurse? Gp?

Eds was suggested by someone to me before, I thought that had to be diagnosed by someone specific (can’t remember the title) and have to go down that channel?

My DS was on movicol and he had to keep taking it daily until he had liquid poo and then cut back gradually until we were happy he was regular himself.

Your DS might not be getting enough gluten in what you described - I think it's something 4 slices of bread every day for 6 weeks. I've read different amounts though.

I have Crohn's and also hypermobility. Interestingly, the hypermobility (hEDS in my case) is also a cause of some gastro symptoms with me and there are definitely cross overs between the Crohn's and hypermobility gut symptoms.

I think the problem with gut problems is that symptoms are very similar between the different diseases, so Crohn's, colitis, coeliac and even IBS share some symptoms in common. It's also possible to have say Crohn's and IBS together so some symptoms might remain even when 1 condition is treated, which complicates things.

Coeliac disease is an allergy to gluten so just eliminating wheat isn't enough. Was all gluten eliminated? If not, it still could be coeliac but the inclusion of some gluten in the diet is why not all of the symptoms resolved.

Are they planning on doing a colonoscopy? What explanation are they given for high calprotectin? Have you spoken to the Crohn's and colitis helpline?

when he was 4 weeks off wheat I know he was allowed to eat oats, can’t remember what else was excluded.

No colonoscopy, an OGD and a small bowel mri.

Nope no indications what so ever. I can not express any more times how crap the paed has been. He dismisses everything. Literally everything and there’s nothin wrong with ds. If it hadn’t been for the calprotectin suddenly shooting up to this high we wouldn’t even be waiting for the OGD and mri!

I got referred by my then colorectal surgeon but he was nice, not an awkward bastard. If you're wary of raising it with the consultant, I would ask the GP what the correct protocol is.
I think a lot of bowel nurses are quite practical people - they know a lot about medication and current research, and though they're not doctors, they've seen everything before. If you can get a decent one, they might have a good idea what they're looking at with your DS.

For EDS you need a rheumatologist. It can be difficult to get diagnosed. There is a specialist clinic in London and I think it may even take NHS patients but it might be tricky to get a referral, unfortunately. Maybe someone else can advise.

Agree that there can be multiple things going on at once. I have a degree of IBS, and I also have a fairly bad food intolerance that did affect my bowel function quite significantly but went undetected for almost a decade because everyone was a bit blindsided by the other more serious stuff that was going on with me. This is what the FODMAP diet is good for. In my case, a really good dietitian worked out what was causing the problem and helped me to get to grips with it - but I've found the quality of NHS dietitians is really, really variable.

Good luck. Hopefully it will turn out to be just a horrendous case of constipation that has run unchecked for so long that the damage will take a long time to heal. If so, I think it will heal, with a lot of patience and Movicol. But other things need to be properly ruled out first.

Sorry to derail slightly - @Hearhoovesthinkzebras, how do you tell what's due to which?
In my case I've been left with a permanent constriction after a bowel resection and I think it's due to the abnormal healing of patients with connective tissue disorders, and I've also been left with nerve damage that may be something of the same sort, but beyond that I often can't tell what's causing what.

My son was diagnosed with coeliac disease at 16 months old, i can't remember if he had mucous in his stools but he was anaemic with it.
My youngest son has bad bowel issues and is extremely thin, been tested for Coeliac disease four times but is is always negative.
The blood tests can come back negative and you can be a coeliac, before the blood test ideally you should be eating wheat at two meals a day for six weeks.

There's a private EDS/Hypermobility clinic at the hospital of St John and St Elizabeth in St Johns Wood London. That's a private hospital. NHS service at UCLH.

@MissElizabethLinley in my case it's been a process of elimination and treatment really. It got to the point where we knew the Crohn's was in remission but some of my symptoms continued. Tried the FODMAP duet which had very little effect. Finally I was referred to a neurogastroenterologist who specialises in EDS/hypermobility. He diagnosed me as having reactive glycaemia caused by the hypermobility and put me on a very low carbohydrate diet which really stopped the residual symptoms.

I know now that certain symptoms are only due to Crohn's (bleeding and weight loss) while the other symptoms can be caused by Crohn's and or hEDS. If a flare starts it's a case of trying to eliminate one or the other. Interestingly I also have a structure which they think was caused by a flare up.of Crohn's but then exacerbated by the hypermobility.

Op, as regards gluten - it's in so many things - gravy, sweets, oats, soy sauce, condiments... Just going wheat free isn't the same as going gluten free. It's very difficult if the consultant that you are seeing isn't helpful. You really need to know what you are dealing with before you can start treating it. Can the GP refer you for a 2nd opinion?

@Hearhoovesthinkzebras thank you - that's very interesting. I think that will be the same neurogastroenterologist who I was told I should see, but I don't really feel I have grounds to try to push for an appointment just now - and I have so much else going on and am already getting a lot of input relative to other patients. There's things I wish I could get the chance to discuss, though.
I'm glad you found it was helpful in your case.

Sorry, OP, derail over.

I don't have coeliac but I do have a gluten intolerance which is an allergy to gluten as opposed to coeliac where the small intestine cannot break down the gluten, my gp suspected one or the other and said a gluten intolerance won't show on a test only rule out coeliac.
I had this diagnosis in childhood so they may have different ways of testing now.

My intolerance are very similar to what you described.

I am only relaying my experience though I have zero medical knowledge so this may well be slightly outdated.

I have asked for a second opinion but after a conversation with the GP it was determined not a good idea as it would put him back at the beginning of the wait list and I can not afford a 37 week wait! Iv already been waiting a year for them to work out what’s wrong with him. I will have to see what comes up with the mri and OGD. If the paed says the same crap I will be hen demand second opinion/ iv just got to get through that first.... hence why I want to do forearmed to that appointment! I thought about going private but as I don’t know what’s wrong I can’t as I don’t have any money. I have a credit card but with an open ended situation I just can’t do that as we don’t know what’s wrong and just having a genera anaesthetic is £1000 without cost of doctor or the actua explorative process

Does anyone have an valid links about the amount of wheat you need to be having if you have coeliacs for it to show positive on a biopsy? I see 4 slices of bread is suggested up thread, but he doesn’t eat much sliced bread. I want to know equivalents of so I can get him eating enough as the OGD is in 3.5 weeks.

Breadfast is Cheerios (being autistic he goes through phases of always having the same things to eat for months)
Lunch at school is a cooked meal, at home it is 4 cream crackers plus other stuff of course
Dinner doesn’t always have wheat In it as I said upthread, pasta generally no more than twice a week, generally this sort of thing each week:
Spag Bol, Spanish chicken, pizza always once a week, lasagna (or macaroni, alternate that each week) always have a roast at the weekend plus a random ‘nice’ tea Saturdays that isn’t necessarily freshly cooked so a ‘treat tea’

What/how much should he be having of wheat and how/where should I be increasing? Obviously I have no control of what he eats at lunch at school as it’s cooked and they can’t have packed lunch so some days it’s wheat but not always so I need to rely on what he’s eating when he’s at home. Roast I could add stuffing and Yorkshire’s I guess but is that enough wheat in a meal?? I could add garlic bread as a side on some of the meals.... breakfast I could try to get him back with wheat but he gets stuck on having same thing..... maybe I could sway him back to bagels but he only eats that with bacon which isn’t good every day is it? I know when he was having bagels do breakfast he was complaining more at school of belly ache....

A lot of what you've listed there no doubt contains gluten - breakfast cereal, pasta, cream crackers plus there's so much hidden gluten in processed foods. It's only when you try to go gluten free that you realise how difficult it is. Maybe Google the test for coeliac and see what it says?

Thanks, I wasn’t sure what the equivalent was in 4 slices of bread I’ll try to contact coeliacs society Monday too.

Don’t know if anyone is about? In hospital, waiting for him to come back. Mri showed thickening of the rectum but surgeon says his bowel looks fine and healthy all the way through??? Taken biopsies but takes 6 weeks... if it looks healthy then what the hell is wrong with him?? I’m guessing as there is nothing to see then the biopsies are going to likely be fine.??

Oh dear, sorry you're no further forward. What has the surgeon suggested as next line of action?

If this surgeon has no more suggestions, I would really try to get on the waiting list for a second opinion. I know it will take some time. but if further down the line he's no better, you'll wish you'd got him on to the waiting list at this stage.

He just said wait for the biopsies. I just don’t understand how it can al look healthy?! Does this mean the biopsies will probably be clear? I will wait to find out results and then will be complaining/putting on someone else lists.

Are the biopsies looking for coeliac or other things? If so everything looked ok for my DD but biopsy results showed the damage

I asked specifically for them to test for coealics and Crohns... wether they have or not I don’t know, I just know they took 9 samples. I’m so upset. I haven’t protected this onto him of course but have to wait another 6 weeks. I had pinned all my hopes on them saying yes there’s obviously inflammation etc here’s some tablets and come see us soon type thing. How can he have cal protectin level of 350 and there be no physical signs of inflammation?? @jinxpixie thank you, fills me with a little hope...

Bumping

My daughter had no visible signs of anything wrong internally but her biopsies were positive for coeliac disease. Do you know if the biopsies were from your DS's bowel or intestines? Taking biopsies for coeliac is usually done via endoscopy rather than colonoscopy and looks at the top part of the intestine.

Our results came back in three weeks when they'd said it could be six, so I hope you get yours faster too.

Thanks for coming here @PragmaticWench makes me feel a bit better. I’m so tired and done in by it all. I know somethings wrong and I don’t know what.

They didn’t say where they took the biopsies from. All I know is they did gastroscopy and endoscopy and it all looked healthy but the mri showed a thickening in the rectum. Apparently that isn’t an issue and that they took 9 biopsies....

I completely understand, when you know there's something wrong with your child but it isn't being diagnosed it's dreadful. DD was very ill as a baby but I was told I was a neurotic first time mother. I also found it infuriating that hospital departments don't talk to one another and you start again with a new referral to each one, such a ridiculous system!!

You're doing the right thing not letting your DS worry about it all, but do be kind to yourself too. It shouldn't be a battle to have a child diagnosed but it can be and it's emotionally tiring!

Thanks for being understanding.

Ds had food allergies and reflux as a baby so this paed said it must be food intolerance and did 3 months of food exclusion but there was no change. Well when he was no wheat (but allowed oats) he had less pain but same symptoms.

If he had coealics wouldn’t he be very sick? As in losing weight etc? He hasn’t lost any