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ERIC
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Could constipation be coeliac disease?

Hi guysI have just discovered this forum and need some help. My 4 yo daughter has been a stool withholder for at least a year and movicol doesn't seem to really be helping. She has one sachet per day but still only has a bowel movement once a week. She is often screaming in pain too which is so heartbreaking and stressful and I am feeling so alone and overwhelmed with it all at the moment. I feel like our lives are dictated by her bowels. She won't sit on the toilet as she says it hurts her and no amount of offers of sweets, presents etc will convince her to even try so when she does have a bowel movement it is in a pull-up. We have tried making her sit on the toilet but she gets so distressed there seems little point. She has no trouble going for a wee on the toilet but does want to get off straight away.

I am going to take her to the doctor tomorrow to try and get a referral, should I request for her to see a gastroenterologist? Has anyone else had a referral and have they got answers / support? The other thing I have been looking into is coeliacs disease, a lot of the symptoms really fit with what she is going through. Has anyone else been tested/found a link between constipation and coeliacs disease? It seems more than just stool withholding but maybe I am reading too much into it.

Any advice or help gratefully received. Sorry for long post! Thanks x

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Hi there, sorry you’re having such a hard time! I’ve been on this forum for a few months and found it really helpful.

Might be worth asking dr for a different laxative. Movicol bulks up the poo with water to make it easier to pass. It’s great for keeping bowels moving but if there is some impaction then it might be worth trying dulcolax. When my daughter was really constipated it really cleared her out. It really pushes everything out and makes it very loose. Can be a bit messy but worth it!!

My daughter is 7 and has had constipation issues on and off since she was a toddler. It got very bad in the spring/summer and I’ve found that regular toilet sitting with the iPad has helped her do a poo every day. I was reluctant to rely on technology but if she sits on be loo for 20mins late afternoon she will go as tbh iPad helps her to do that!

Re: coeliac, my daughter was also recently diagnosed with that with constipation really the only ‘gut’ symptom. We’re still not totally sure it’s related but very likely and the gastroenterologist told me they are seeing constipation as an increasingly common symptom. We had no family history of coeliac so had been a bit of an adjustment. Might be worth an ask, it’s a funny condition with symptoms that really vary from person to person but it is under diagnosed!

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Thank you for your reply, I am glad I am not the only one going through these issues! I will ask the doctor for some dulcolax to try and clear the impaction and stick with maybe 2-3 Movicol for a while and then slowly decrease. The thought of suppositories or enemas brings me out in a cold sweat as I think they would be too traumatic for the poor little ones.

That's really interesting re the coeliacs disease, I think it would be best to check her out. I have had no offers of referrals, just been told to up the Movicol and this was after the last time she was impacted and hadn't had a bm for 18 days in the summer! I am definitely going to push the doctors a bit harder now.

Thanks again x

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My toddler was the same, very distressed passsing stools. We upped her movicol so her stools were softer and more regular. She had previously had anal fissures from passing hard stools and this made her relate pain to opening her bowels. We had a paeds referral expecting different answers. But after making her stool passing a happy time by singing and blowing bubbles, this helped relax her and change her psychological view of opening her bowels.

She does like to go in private most times and will ask you to move away or deny she is going. I reassure her that it's ok to poo and she doesn't have to be embarrassed and often give her a hug and let her know I am there for her when she would like me. But once she has finished she is happy to be changed. She has also done many on the potty. She is 23 months old now.

Can you offer the potty for your little girl to go on? Put it in a friendly safe place until she is comfortable using it, then you can try moving it to the bathroom and eventually she can make the change to the toilet.

I hope she gets some relief soon.

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Hi Aimee7, thank you for your reply.

I really like your suggestion of putting the potty somewhere safe then moving to the bathroom and on to the toilet and trying to make having a bm fun. At the moment I feel like we are so desperate for her to go we are putting too much pressure on her. We do try and stay relaxed but it's hard sometimes!

Like your daughter my little one has also had anal fissures in the past, which is probably what started the withholding and now seems to be a psychological block to going to the toilet. I know this is totally understandable but at the same time very frustrating.

I just don't want this issue to continue for years without resolution as it's so hard to watch my daughter suffering. x x

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We used to keep our daughters potty in her bedroom by her book shelf and although not ideal it was the way we got her to use it as she would generally go after her bath whilst not fully dressed in bed clothes. We then slowly moved it to the bathroom.

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That's a good idea, I will give this a try and see how she gets on. I have got the special 'family' toilet seats that have a child sized seat attached to the main seat so she feels really secure but think we might have to start with the potty before moving onto the toilet. X x

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Hello Emmys,

My daughter now aged 12 has suffered from severe constipation pretty much her whole live. It has has many different 'faces' in that time and we were recently referred to a new specialist. My husband asked him about the dietary link and his response was that if it is food related, it is most likely to be caused by gluten and she would have coeliacs (she had already been screened and doesn't) or the other big food cause is dairy. We had done an elimination diet when she was 3 but he thought it worth trying again.

I agree with Fiona that Movicol is good to maintain regular bowel movements but regular means daily. If your wee one is only having a movement weekly she is going to become traumatised by the toilet. She needs something different and may need a disimpaction to really clear things out.

Keep reading, there is some amazing info on this site and the more you read the better you are able to be your daughters advocate.

A really good paediatrician told me that pain is a terrible teacher. Forget the toilet and 'acceptable' toileting habits until she can have a bowel movement that does not cause her pain and distress. Sort out her body before you sort out the toileting.

Sending you and your wee daughter much strength and good health.

The Laundrymaid xx

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Yes in terms of starting pooping we used Tesco £1.50 nappies - she'd ask to poo and we'd pop one on, open, in her pants to catch the poo. Several months that way before we went on to the toilet!

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Thanks so much for your help Laundrymaid I totally agree with your advice of sort out her body before the acceptable toileting habits. I think I will definitely up the movicol doses and try and get some dulcolax as suggested by fionab23 although we have been given cosmocol (assume a cheaper version) to try and clear her out again first.

I just feel like we are going round in circles. She seems to go for a few weeks when things are going well and she is having bowel movements every other day but she started school in September and it has all gone out the window and we are back to square one with no answers and I feel like we are dealing with it all alone.

Oh I am EmmyS but must have registered before and completely forgotten about it under MabelsMama and it's automatically logged me in to the previous registration. I am officially a technophobe!

I am just glad I am not the only one dealing with these issues but it sometimes feels like it. x x

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Hi

My son has suffered since he was 1 (he's now almost 5), it took a lot of pressure on our GP to get a referral, you need to be really firm and push for one. Our paediatrician did in the end test for coeliac disease which initially is just a blood test (he was negative). My son used to withhold and we upped his movicol to 3 a day which has made a huge difference. He also used to have such a sore bum, completely red raw - it took about 12 different creams but we finally found one which worked and again that has made a big difference.

At the moment he's going almost every day which is amazing, its taken about almost 4 years to get him here and it seems to be a combination of things which has helped him. Sorting out the soreness, getting the poo really soft and finding the right motivation for him to sit on the toilet have been the key. I'm sure we'll have relapses but we're getting there.

Good luck with your daughter and I hope you find something which works for you!

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Yes - the sore bum thing can be a real problem. Mine has a small 'pile' which has shrunk thankfully. Indeed I think that is what started it all... she had a skin tag there as a baby which may have hurt when combined with weaning poo... and then got in a bad cycle.

We found melatanium and Child's Farm lotion (yes we do have a bum bottle and a after-bath bottle ... kept well apart) help with pink bums!

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I am going to push the GP for a paediatrician referral too now. I will look out for melatanium cream as well, anything is worth a try. I have been using Sudocrem or Vaseline so far.

I wish I had come on this forum a lot sooner, it feels so good to talk to and get advice from other people who are going through and have been through the same things.

I will definitely up the movicol dose for quite a while and hopefully she will get into a better cycle again. She is so wise to it and knows when a drink has it in and asks for water so we can't hide it! I like a tip of hiding it in jelly I read, will try that one next.

I am glad your son is having regular bowel movements now and it gives me hope that we will get there too one day.

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A couple of things - many kids need way more than one child sachet, especially to start with. They are too scared to pass normal poo so the cycle continues.

We followed this:

-Started with a clear out (our daughter was lightly impacted and did not leak, so was liquid at 4 sachets a day for a couple of days).

-Wound it down to 2 sachets a day (pretty runny!) for several days and almost 'brainwashed' her by looking at the soft/runny poo and going on and on about how it was soft and won't scratch or hurt anymore.

-During this time we gradually helped her poo. Step 1: cheap tesco nappies (it's less scary than a plop) twice a day and huge praise for pushing even once. Step 2: cheap tesco nappies when she asked for them PLUS the two set times a day and praise for pushing plus smarties for producing any poo. Step 3: As above with extra rewards for sitting on a toilet or potty in the nappy. Step 4: Trying without the nappy. Step 5: (we are here) 99% of the time without a nappy, now working on asking to use toilets which are not at home, and trying to poo at nursery/school - PLUS we keep the morning and evening poo session religiously and her instincts (which used to prevent her releasing) mean now even if SHE refuses, by 8pm we hear little feet trotting to the bathroom and muttering 'I have a poo poo to come out! Muuuum!".

Basic aim is to get the behavioural reflex of holding on re-trained so it's a reflex of letting go at times she is likely to be somewhere with a loo (after dinner, 1st thing in the morning).

-Gradually reduced (over months) to a dose of 1 sachet one day, 1 1/2 the next. This produces "Bristol 4" stools. However it took months for her to be psychological able to pass them: prior to this she would have simply held them in until they were hard as rocks even on medication!

However, I know of children on forums who are on 3 or 4 sachets a day to keep their stool at a "4" who just have constipation, no other conditions.

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Really great advice, thank you. I never really thought of it but I suppose everyone is different so may need different doses of movicol. I was seeing it as it had to be one sachet a day but will definitely I will be more flexible and stay on two a day once the imapaction is dealt with for a longer period of time.

Thanks so much for describing your method of how you got your daughter to use the toilet, this just seems like such a mountain to climb at the moment but I think we were trying to skip steps so we will take it really slowly again once the impaction is cleared. I am glad your daughter is doing really well and hope we are at that stage one day.

It feels great to hear other people have gone through it and survived, I don't know anyone else who is or has gone through it and it is quite stressful.

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Hi there, sorry to hear of your daughters troubles. My daughter was diagnosed with coeliac disease 4 years ago when she was 8. She had not not had a kidney operation in London, she had suffered a lot with constipation previously which she was on movicol for, to cut a long story short, after her operation, she became very poorly and lost so much weight, she was a tiny little thing anyway, she started feeling very sick too, she was suffering from extreme tiredness and mouth ulcers were really getting her down, I took her several times to the doctors as she was suffering from stomach cramps very low down, I thought for one minute she was starting her periods but after being fobbed off several times, the school were panicking as she was dangerously thin and they thought she had an eating disorder, they insisted that the doctors looked further into her unknown illness, do one brilliant doctor actually listened to me and after everything she had gone through with the operation and then this strange illness, he got her bloods done finally, and within 3 days it came back as coeliac disease, I was so relieved that finally we had an answer but obviously angry that we were fobbed off so many times but she had to have a biopsy done which also confirmed she had coeliac disease, she had also contracted a secondary intolerance to cows milk (lactose) but after going on a short 6 month dairy free diet along with a strict gluten-free diet, the milk intolerance is clear now. Obviously she still remains on a strict gluten-free diet for the rest if her life unless they find a cure but happy to say, she is now a very healthy weight, still tiny but all in proportion instead of bones sticking out bless her, it was hard at first especially with the dairy free as well but it's do much easier now and she probably eats better than the rest if the family, she still gets very tired but she is on vitamins to help with the lack of iron etc, good luck, hope you get some answers xxx

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Thank you for your reply, it is really helpful.

Sorry to hear of your daughter's suffering for so long before being diagnosed with coeliacs but very glad she is improving with a gluten free diet.

I am not sure whether my daughter has coeliacs or not but we are going to try her on gluten free for a month to see if there are any improvements before asking for a blood test. It may be a stool withholding issue on its own but whether there is an underlying issue it's difficult to say at this stage. It would be good to rule out though as there seems a definite link between constipation and coeliacs. My daughter is small for her age and has a 'Jekyll and hyde' personality but that could be caused simply by the stool withholding, it will be interesting to see what happens in the next month.

Thanks again x x

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