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Morning All,

Just an update, I got an urgent appointment through my contact with PALS. The doctor confirmed her levels were the highest possible so she likely had higher levels of inflammation.

Since the appointment, they ordered a second set of bloods, but as many of you confirmed he felt there was no doubt she was coeliac so asked us to start gluten-free.

Since starting around a month ago, we have had no vomiting and this is the first week that we haven’t had to give her movicol. She’s had a (currently) a two week break from winter colds which is unheard of for her as she used to have a permanent cold in the winter months. Her tummy is softer and deflating quite a lot and her faces looks a little rosier.

It’s wonderful and although I know we will have tough times in the future and difficulties with eating out, I feel so happy that we can make her better. 
 

Thanks all. 

Thank you. That’s all really helpful. I think it must have been something she ate as the poo colour has settled now. 
 

Starting to see improvements in her tummy, slowly but surely!

Hi there,

I have a few questions about my daughter who is 2 and has been gluten-free for two weeks following her diagnosis please!

She was originally diagnosed due to having faecal impaction and chronic constipation. Since starting the gluten-free diet, we are still on daily movicol but she is pooping a lot more than before. Could this finally be her naturally clearing out the backlog as her digestive system is actually starting to work again?

Secondly the colour of her stools has recently been a bit pinkish. It does not look like blood, but I wondered if this is normal again for a colour shift post diet change?

Finally, she has had a very large tummy due to the coeliac. How long does this take to go down?

Thank you!

Thanks. 
So something has come up on his blood tests and I have an appointment to discuss the findings on Monday.

My son has been soya free and dairy free for a while as we did York food testing to check for allergies intolerances. 
 

Just had my daughter diagnosed and am currently awaiting blood test results for my son.

As well as many bowel issues, mostly loose stools with mucus and lots of gassy moments sometimes leading to leaning stool, he has recently soiled himself in his sleep twice.

He has been toilet trained for a long time, but is not waking up with the poo. It’s not just a little, it’s a lot. 
 

We have had to make an appointment re his blood test results next week so will find out if it is coeliac too but I’m just wondering whether anyone else has had this?

Ive read online that it could mean he’s constipated, but he poos all the time and it’s often soft, never hard. 

Just to update you all, my daughter had her appointment and I was thoroughly impressed and satisfied. Her coeliac results were the highest possible so she only needs a further blood test, which they did there and then to confirm there’s been no lab mix up.

The doctor was convinced that the constipation was a result of the coeliac and felt that she may not be impacted, just slow moving. He felt the new diet will fix the constipation among many other things.

I’m so relieved! Thank you for your support.

Thanks.

My email to PALs worked last night and I have got her an appointment for tomorrow. I’m thrilled. Don’t think it’s with gastro, back with paeds, but like you say, might be enough for them to see that her results were so high so no further testing required. 
 

I’m hoping I can go gluten-free shopping tomorrow to celebrate. Would you recommend signing up to celiac Uk charity membership?

Thank you. Yes I’d looked into both of these causes. My only thoughts on a triggering event were when my daughter was born and she had breathing difficulties so was in NICU. 
 

It’s all quite fascinating. My husband shows signs of celiac. Low immune system, b12 deficiency, peeling skin and more recently severe and intermittent allergic rhinitis. 
 

We will all get testing, I’m sure. 

3 minutes ago, trents said:

Check my last post as I added some to it.

Thank you. This was my thinking too.

My son is actually undergoing celiac testing now too as he has been experiencing digestive issues most of his life at 5 years old. Not constipation, more loose bowels, flatulence etc. In a very strange way, I’m hoping that his will come back positive too so that we get some answers and can actually start to help him as he’s getting more aware. 
 

I had testing when I was 20 and it came back negative so I think my husband may have it. Just telling him now to get tested too! I’m happy for us all to go gluten-free in the house as I’ve got IBS too so it wouldn’t be a bad thing to avoid it. 
 

This, I do not know. She was diagnosed after almost daily vomiting in the evening in June/July. Her X-ray showed she was back up all the way up her digestive tract. Even then, she was pooing daily.

Possibly a delay, yes. I don’t know. It’s all a mystery, but the celiac disease must be causing this. 

13 minutes ago, Scott Adams said:

I'm sorry to hear your daughter is going through this—waiting for more answers must feel so difficult, especially with her symptoms intensifying. Given her confirmed celiac marker and her current diet, it's certainly possible her digestive system could be reacting to gluten. Even before a formal diagnosis and starting a gluten-free diet, celiac disease can cause a range of digestive symptoms, including malabsorption and slowed digestion, which might be leading to undigested food and the vomiting you're seeing.

Fecal impaction, along with increased Movicol, could also complicate things. Movicol is generally helpful, but it can sometimes cause mild nausea, especially if her system is already sensitive.

Given the visible undigested food and persistent symptoms, it could be worth checking with her healthcare provider about possibly adjusting the dosage or timing of Movicol to see if that eases the vomiting. If her symptoms escalate or you’re concerned about her nutrition or hydration, it may also be best to seek guidance sooner—some gastroenterology offices offer consults or advice in urgent cases.

Thank you. I’ve emailed PALs again tonight requesting relatively urgent referral. 

I can’t stand the suffering for her anymore. 
 

I’m going to try and do the movicol in the morning from now on like you suggest as it does seem to bother her in the evening. 

12 minutes ago, trents said:

Do you have information concerning the range for negative vs. positive for the celiac antibody blood test that was performed on your daughter? Different labs use different ranges. There is no industry standard in how these tests are constructed. The reason I ask is that it is becoming more common in medical practice to forego the gastroscopy/biopsy for confirmation if the results of the antibody blood testing is 10x normal or greater.

So our local testing says anything under 5 was normal. 5-10 required further blood tests and 10+ meant celiac is very likely and to refer to gastro. My daughter’s was 120. The paediatrician said it was some of the highest results she’d ever seen. 
 

The more I read on here the more I wonder whether we’ve been dealing with the celiac the whole time and yes she has been impacted (confirmed by X-ray) but she may have just been backed up due to the slow digestive process.

I will start giving her the movicol in the morning as that may help like you say. By the evening, she’s full up and bunged up. She’s pooping well though, every day, sometimes 2-3 times a day. I’ve always adjusted her movicol accordingly I.e if the poo looks too hard or bitty then I increase for a few days so I find it hard to believe she has a blockage again. 
 

I hate feeling like I’m poisoning her at the moment.

Thank you all. 

Thank you again.

We only upped the movicol due to the vomiting starting again. It’s been 3 times in the last two weeks. No other symptoms.

I’m just so fed up of the waiting and I just want her to get better. 

Sorry to clarify, my daughter is two. 

Thank you so much for replying.

Tonight, we only did one which is her usual maintenance dose and then immediately after she vomited. My gut tells me it’s not the constipation.

I have been waiting 3 weeks for a referral since her initial hospital appointment. I contacted PALs yesterday and the paediatrics department called but seemed clueless about her lack of referral.

I want to start her on gluten free asap as she’s obviously suffering and it would help me with answers. Maybe I will email PALs again tonight and see if they can continue to chase for me.

Can you just explain why the movicol could be exacerbating the issue please? I don’t quite understand. Thank you so much! 

In our experience, yes.

My daughter has recently been diagnosed and these are her main symptoms as well as a bloated tummy. 
 

Out of interest what’s the vomiting like? Is it intermittent? Just one episode? Day or night?

Hi there,

my daughter has been tested for celiac and in her initial blood tests she came up as a clear positive of 120+. We are still awaiting an appointment with the gastro team so are currently following a normal diet.

Her diagnosis came about as she was intermittently vomiting and it turned out that she had severe fecal impaction all the way up her digestive tract.

We disimpacted have been having movicol daily since July. In the past two weeks she has begun intermittently vomiting again. I upped her movicol for the past week and her poo was clearly fresh poo with recent food bits coming out. 

Tonight she’s just vomited again after her medicine. I’m at my wits end! Could this actually be the celiac rearing its head? So much undigested food came out. Scrambled egg from 11am for example.

Thanks!