Anyone have little DC with celiacs?

[DaisyDaisyAnyAnswerWillDo]

I am at my wits end with the ever increasing list of ‘minor’ symptoms my 3yo has. Over the last year we’ve been at dr and/or hospital probably every two months. Many doctors have agreed she has various unusual presentations but the outcome has always been ‘wait and see’. Things (symptoms) are now more severe and causing more distress and pain, and we cannot get seen for further investigation because of the pandemic.

I came across the nhs page for celiacs recently and realised DCs many and apparently unconnected issues are mostly on the list of symptoms.

Since I can’t pursue this til the autumn according to my GP, anyone else out there have a DC with celiacs (or any other bloody thing, I really am pulling my hair out now), with the following symptoms-

Extreme fatigue
Foul smelling gas and diahorrea
Abdomen pain
Bloating
Difficulty concentrating (which did not previously exist)
Problems with balance and coordination
Mood swings (taking into account DC is 3 so some are par for the course!!)
Difficultly sleeping
Muscle spasms

Reluctant to start on a gluten free diet without medical advise as 1) common sense and 2) it would queer her results when (if) I can eventually get a test for it

Thanks to anyone who’s made it through this screed. Any help or insight at all so gratefully received.

My son was diagnosed with coeliac disease aged three, by blood test. They used to do biopsy as well but have stopped putting kids through that, at least in my area.

A lot of the symptoms you mention could be coleliac, we were told it affects the body in all sorts of ways, not just the gut. Stunted growth is another symptom, also anaemia. Some of the behaviour you mention could just be his age, really hard to know sorry.

Has no medic thought about non IgE allergies or celiac yet, and they've just told you to wait and see?

These symptoms would fit with either - so it may be gluten or it may be another food causing the issues.

Look up the NICE guidelines on celiac and the NICE guidelines on childhood allergies, and have a read of the symptoms bits and diagnostic pathways.

Then go to the GP, tell them the symptoms need investigating, point to NICE guidelines if necessary, and demand a blood test for celiac. She still needs to be eating gluten regularly (like, twice a day is best), or any negative test could be a false negative.

If the celiac test comes back negative, it doesn't mean there's nothing wrong with her - it means she's not celiac. I would then look into non IgE allergies, which can present v similarly. Sadly no actual test for these, but you can try excluding the obvious candidates one at a time and then reintroducing, and see if symptoms abate and then recur. Most usual for issues would be gluten (sometimes Inc oats), dairy, soya, or egg (in our family, all of these, but my DC are extreme cases ).

The diagnostic timescale for these types of issues is recognised by medics who are expert in this area as being really terrible, so you're not going mad - those symptoms are all definitely worth getting to the bottom of, and might well be related.

Feel free to pm if you need any help.

@JeanMichel thank you for your response. No, despite being to the doctors several times over the last two years due to stomach issues no-one but me has ever suggested allergies or celiacs. First we were told ‘one of these things’ then later ‘toddler diahorrea’ then most recently ‘we can’t investigate this right now’.

All ‘non stomach’ symptoms have been treated as entirely separate from stomach symptoms and although there tends to be agreement that she is not quite right each time it’s been, as I say ‘wait and see’. Whether that’s been facial rash lasting four months, or balance problems to the extent that still at three she’s often not comfortable doing a small set of steps unassisted. The sleep difficulties and tiredness just keep being dismissed as ‘she’s a child’. But for example yesterday I couldn’t get her out of bed until 12. She just kept saying, I’m too tired to get up mum. All day every day she reports tiredness to me and asks to lie reading books rather than play. To me that is something beyond just being a kid.

I am really at the point where I can’t lose another nights sleep over this and getting myself wound up on Dr Google (which I KNOW helps nobody but it’s so hard to resist when you’re getting nowhere in real life!)

Well I think Dr Google is completely understandable when it's clear there's something wrong and no one's helping!

The list of symptoms you've written would all tally with non IgE - I reported similar symptoms for three years and was told categorically, even by consultant gastro, that totally unrelated to the gut issues. Then made it to a gastro consultant expert in non IgE allergies - I didn't even mention the weird additional symptoms during the consult as I didn't want him to think I was made, and then at the end he reeled of a checklist of weird and whacky non gastro symptoms to check if she had any. I was simultaneously so relieved and so angry!!

You're going to have to push, but just remember - you are absolutely NOT mad to keep banging on about this.

Have you tried different GPs within your surgery? If they're all crap, can any of your friends recommend a different surgery?

Problem at the moment is lockdown, so it'll be even harder to push things through right now, but I'd Def get your ducks in a row in terms of NICE guidelines etc, and you can write down a bullet point list of symptoms and state that they must investigate further, or you'll be lodging a formal complaint.

You could try removing foods from.her diet, as that might well give you some type of answer, but you really do need to know if it's celiac rather than non IgE, as celiac genetics also mean an extra risk of other auto immune probs like thyroid, type 1 diabetes, so that's useful to know. And going back onto gluten once you've come off is REALLY tough.

I would start by asking for a calprotectin test to be done. This is a stool sample that looks for inflammation. The symptoms you describe are similar to what my son had.
It took two years of going back and forward to GP seeing everyone in the practice and nurses also to finally get a referral to the hospital. He was eventually diagnosed with crohns disease. He was 8 and had had symptoms for over two years at this point.

Unfortunately with children you sometimes have to really push to get something done to help your child.

I think a three year old with balance and coordination problems who won’t get up till midday needs reassessing by a doctor. These are important symptoms which need looking at now, regardless of corona.
Maybe it’s coeliac maybe it’s not. But I’d call the GP again.

As @chinateapot says please talk to the GP again. The reason my son eventually became diagnosed as coeliac was that he became seriously ill first - and was very tired. He needed an emergency operation. Because being coleliac means the body is not getting the right nutrition it can cause problems elsewhere. But a small child being that tired is worrying.

@chinateapot @Intastellaburst thank you guys. Yes I am very worried by the tiredness. That part of it all is more recent that the stomach symptoms which have been since very early childhood. But it’s very troubling to see. I managed to wheedle her into a walk this morning and since then she’s lay on the couch in a blanket and refused lunch because she’s too tired. That’s now four hours since walking 20 mins or so. It’s also a worry as her muscle spasms (diagnosed recently as a benign automatism by doctor) are triggered by tiredness and so are extremely prominent at the moment. She can’t colour in for example due to the level of involuntary jerking of hands and arms.

I think I’ll try yet again for an appointment on Monday and say truthfully that the fatigue is worse over the weekend. I’ll try and demand the blood test. Thank you everyone.

Jerking to that extent? Jesus - and who's diagnosed this as benign automatism with no further investigation? The GP? I'm sorry, this is utterly negligent. I feel so angry on your behalf.

You need to put your foot down in no uncertain terms - present them with a bullet point list of symptoms, also setting out frequency and impact on her day to day life, and tell them you will bring a formal complaint, which replicates all this information, if they don't undertake all suitable investigations asap.

(For what it's worth, the spasms and balance problems might poss be caused by b12 deficiency due to gut malabsorption - but of course they could be other stuff. That symptom alone merits further investigation, not just a brush-off. My god, I could cry for your poor DD.)

OP, ring 111 urgently - she does not sound well...

If your GP's are negligent to the extent they are advising you wait and see then she needs to be seen by someone else. Can you get an urgent referral to primary care? Corona or not; this needs assessing as soon as possible.

With those symptoms, I genuinely don't think A&E would be unhappy if you brought her in and just said you're hugely concerned that she's deteriorating.

Ok Dd is a confirmed coeliac, but an older teen now.

She had a positive blood test but because she was a teen they said they wouldn’t diagnose coeliac disease until she had an endoscopy. There was a six month wait for this and she deteriorated during this time......you have to keep eating gluten while waiting for it or you get a false negative. She was so poorly I thought she was dying and kept ringing GPs, consultant, etc. So we made the decision to fuck the test off and go gluten free and then 3 days later we couldn’t properly wake her up, she was semi responsive. Dh carried her into the GP surgery and they said hospital now, we bypassed a&e and she was admitted.

The first doctor said she’d have been dead within another few days. She was so severely malnorished because her villi were so flattened she wasn’t absorbing anything. She was very anaemic, vit d was in her boots, b12 in her boots, potassium was very low and had to go in a potassium drip.

I’m saying this because it can be serious and the GP saying wait six months is unacceptable. A blood test can be done now surely? I guess for a kid so young it needs to be done in hospital? Which makes it trickier but if someone is ill they should be seen regardless of coronavirus. Another option for you is to buy a finger prick test from amazon....not sure how accurate they are but I’ve seen them for sale.

Dd had all the symptoms you listed. She also had a bad lactose intolerance and we had to cut that out for a while.

I’d take her to a&e. The extreme tiredness, muscle spasms, etc. Her electrolytes could be imbalanced.??

OP - I thought I might get jumped on for suggesting A&E, but other parents experienced in this area are also suggesting it. I'd just take her, seriously. She sounds so poorly to us outsiders who aren't dealing with it every day xx

@JeanMichelBisquiat yes for the last week the jerking has been near constant and at that level. It has however been something she’s done since a very young age; so in a sense although it is very unpleasant to watch now and upsetting of course (thank god for us, doesn’t seem to upset her aside from frustration at times) we are kind of accustomed to it?

The diagnosis was by a paediatrician who works in that area (unsure of his title) who saw a video of her having an episode. Because she has never lost consciousness and can always be brought out of an episode by touching her and speaking to her, he wasn’t at all concerned and said he was closing the referral off.

@jacobrees thanks for your reply, I’m so glad that your little one got that diagnosis in time and it got sorted out. We ordered the finger pricked test two nights ago, waiting on it arriving and thinking it may give us a bit of ammo for the GP if it shows something up.

To everyone suggesting 111 or A and E my mum actually suggested that today. I’m not sure.... I’m certainly not happy with how she is but the extreme tiredness aside there’s nothing ‘new’ and currently no acute pain in her stomach - hasn’t been for a good few days/last trip to GP who ‘wait and see’d’ me again. It’s a worry as well to go right now.... my hospital has a bunch of covid 19 cases as I’m sure most do.

Covid cases will be completely separated off, and A&Es are apparently really quiet - they're desperate for people to come who need to, as people are waiting until they're really poorly.

Sounds like paed ruled out epilepsy, but not any other causes. We found a lot of "that test's negative, so there's nothing wrong" rather than "that test's negative, so that rules that out, but symptoms are still there so what else could it be."

Seriously, I'd take her. She sounds very poorly.

Big hugs, OP

@jeanmichel thank you, I appreciate it. Pretty drained by it and feeling so sad for her these last few weeks.

My DD was poorly at the same age, and undiagnosed for three years. She is now 12, and the trauma (and I use that word advisedly) of having such a poorly child, and not being able to get to the bottom of it, still lives on in the family. You are right to push and push some more, but it is indeed draining and distressing seeing them like this and feeling helpless. You won't realise how much until you're out the other side. Hence big hugs!

I really would take her to A&E and refuse to budge until they either investigate or set up appointments for investigations, and make them tell you what tests they're doing for what (and take notes).

Whatever you decide, do feel free to keep posting if it's helpful and let us know how she's doing. X

Sorry, that was a bit imperious - obv you'll feel free, it's your thread

My GP missed my son’s illness and thought he just had a cold. Luckily a medical family member suggested A&E to me - he was then seen by several paediatricians and had all sorts of tests done before a scan of his heart identified the problem. Just mentioning this as an example of how in A&E they have specialists and equipment which can identify problems GPs might miss. So it could be worth going as previous posters have suggested, even if just to put your mind at rest.

I don’t think a&e will set up appts for investigations......they just (ime) assess whether anything needs doing now and if not tell you to go and see Your gp to sort out appts.

The question is whether she’s poorly enough to get some tests done now. They may well do blood tests as they will have an on call paved covering so even if you only get that done it’s one thing you don’t have to wait for. But if doing blood tests such as a FBC, ask them to do a coeliac screen at the same time.....save another venepuncture later on.

Sorry, I didn't really mean making appointments - I meant they might be able to get you direct to the appropriate specialism, but I may have been wrong about that... apologies if so!

The way funding works is that referrals need to come from primary care unless it’s an emergency.

So with my Dd because she was admitted yes she saw a gastro consultant that day. Skipped the queue. But if she’d been seen in a&e and hadn’t needed to see a gastro doctor that day they wouldn’t have set anything up.

Gotcha. We've only ever ended up with admission, too, so would have been same as you.

Currently sitting in hospital with doctors refusing to do bloods and trying to send us home having done nothing, to ‘wait and see’ and keep a food diary. Have just googled the nice guidelines to help try to persuade them. This shouldn’t be so hard!!!!!