Possible coeliac, brushed off by GP

[Mrsfancyfanjango]

Just taken dd2 (2.5) to the GP for investigation into coeliac and paediatrician referral. Spoke on the phone to GP prior to appointment and he said her symptoms sound like it could be coeliac and invited us in for an appointment for referral. I was reassured this would be taken seriously.

Dd has had a few issues since she was very small, since weaning really. She is very small (2.5years, currently wearing 9-12 months bottoms) particularly her lower half although she isn't very light so follows her growth chart perfectly! 7lb7oz at birth. She has always had a very bloated pop belly, has loose frequent stools everyday, some days it's horrendous for her. She fatigues very easily and will happily sleep 4+ hours in the day and another 14 hours at night. She also has very scaley excma (sp?) behind her ears and on her belly, as well as really OTT waxy ears - not an official sympton but apparently it's common amongst those with coeliac or so I've been told.

We have done food diarys and she is fine with dairy which is what had been suggested before.

Got to the GP this morning and feel like we have been completely brushed off! He listened to her stomach and looked at her growth chart and said if it was coeliac she would be considered failure to thrive when and she isn't and suggested swapping milk for soya milk (why?!). Off we go. He did however find she has a mild heart murmur which we are being referred for.

Do you think this is worth pushing? I know my daughter and I know somthing isn't right. is there anyone about with experience of coeliac or gluten allergy that can give me some advice?
Thanks for getting this far!

Oh and to add she can be very randomly sick, which can smell like very acidic poo. She's well when this happens and I'm not sure why it does. Usually in the night, no coughing or crying to explain it. She doesn't do this so much anymore but used too a fair bit

You can buy your own coeliac blood tests to do at home. But really, your doctor should just administer, or get the nurse to administer, the blood test.

My son's coeliac wasn't picked up until he was nearly 19. Sometimes they don't know what to look for and it's not always obvious. He was thin, had occasional stomach pains and found it hard to focus, unfortunately often during GCSEs and A level exams.

Persevere and do your own home test if necessary. They are accurate (I tested myself at home and the surgery did one on me and both showed that I did not have coeliac).

But do not take her off gluten until you have gone through the whole procedure. Usually that involves blood test and endoscopy. It's really important to keep on eating gluten until you have a diagnosis.

Failure to thrive is not a 'required' symptom. I know two people who were diagnosed as adults, both of whom seemed fit and robust until a couple of years before their diagnosis. One used to eat ridiculous amounts of food, yet remained lean, and everyone simply assumed that he had a very high metabolic rate. But as nobody discussed bowel movements he had no idea that it wasn't normal for food to appear to pass through virtually undigested, nor that explosive diarrhoea was not normal. Had he queried it, he might have been diagnosed 30y earlier.

Definitely push for a blood test. (Compare with my experience: 2dc with unexplained tummy cramps and nausea, I tell theGP that one grandparent is coeliac, and he immediately sends my dc for the blood test.)

You have pretty much described my almost 6 year old daughter. She has been investigated on and off since 11 weeks old. She is very small. She weighs 2st7lb, is over the 50th centile for her height. She is anaemic and between the ages of 2 and 4 used to sleep between 16 and 20 hours a day. She was barely awake. She has scaly eczema on her tummy, back and bum, always had loose stools, bloated belly most of the time, she does have way ears (but I've never thought about mentioning it to anyone) However she is in agony most days. She has a lot of pain in her tummy which can last anything from an hour or two to days on end.

She has had countless blood tests for coeliacs disease as apparently she looks like she has it, pale skin, dark rings under eyes etc However they all come back negative. She does have a milk allergy, diagnosed at 8 weeks old and follows a completely dairy free diet. We are now waiting on a procedure in GOSH but she has already had a colonoscopy, endoscopy, abdominal ultrasounds, Meckel's scan and barium meal scan and other procedures.

If you are not happy then I would take her back or get a second opinion. However blood tests can come back as a false negative and only a biopsy of the bowels can be certain.

Thank you for all your responses
I will definitely push it! It's so horrible not being heard, especially when it's your children's health.
lifeisgoodish she may have a paternal grandfather with coeliac which I didn't know about until now I'll call the surgery and request a different GP see her.

The failure to thrive thing is commonly used but so wrong. Absolutely go back to another GP. Describe her stools in detail to the GP - consistency, regularity etc. They are the key indicator something is wrong.

And yes as above - don't make any changes to her diet at all. She has to have been on a gluten inclusive diet for 6 weeks+ for any testing to be accurate.

thank you Juxta
I have just been looking at the coeliac UK site and it has change of mood and emotional distress listed as symptoms. Of which dd has, yes she's two but terrible twos does not explain her behaviour, she isn't naughty (well she is!) but she is emotionally distressed, a lot. I did mention this to GP but as expected I got 'terrible twos, doesn't mean she has a health issue'.

I am feeling more and more convinced that she has coeliac or atleast a gluten allergy.

Thank you for all your help!

My son puzzled me a lot as a child. I couldn't work out while he was so reactive. If someone teased him, there would be a meltdown. We are a very joshing family, so he was used to it at home and liked it, but at school there would be meltdowns. Nobody else in the family is like this. He found make friends very hard for some years because people knew they could press his buttons and get a great response.

Apparently the lack of proper nutrition can explain this.

The moody thing is quite interesting. DD1 began suffering from IBS in her mid teens, but tested negative for coeliac.she became ridiculously moody, totally unlike how she was as a young teen. I have always put it down to teenage hormones and being in pain a lot of the time though.

Anyway she is 20 now and for the last few weeks has been strictly following the FODMAP diet (which is gluten free). It is helping massively with her IBS and from the odd slip she has realised gluten is a major trigger. I have just realised she hasn't had a strop for ages.

It is so hard to not just remove gluten from her diet but of course we would never get a diagnosis if I did that.
Dd is definitely very emotional, some mornings she will wake up in tears and carry on grumling until lunchtime for no particular reason, everything becomes a meltdown. She is a miniature Jekyll and Hyde most days.

I really don't know where to go with this all, I am fed up of not being taken seriously.
All her issues individually don't point to anything specific and because of that no dr seems interested in even glancing at the bigger picture

As I said, it is fairly straightforward to get your own home blood test. Do it, see what it says and then go to the GP.

www.healthcheckshop.co.uk/store/coeliac-disease-test?gclid=Cj0KEQjwyum6BRDQ-9jU4PSVxf8BEiQAu1AHqo1azMRc4DSp08GR-kAX2-vImn8tneLPsraknj-3168aAgrt8P8HAQ

Hang on, you have to be over five, it says, but I don't know why.

This one doesn't specific lower age limit.

www.amazon.co.uk/Biocard-Celiac-Test-Gluten-Sensitivity/dp/B0013G6C6Q/ref=cm_cr_arp_d_product_top?ie=UTF8

Or just go and ask for another GP. They're supposed to be taking caeliac very seriously so just push.

I think you get a lot of false negatives with coeliac testing though.

OP my DH has coeliac. When he gets 'glutened', his main symptoms are depression, moodiness, inability to concentrate. He never cries, but when he eats something contaminated he often says he feels like crying and just needs to be left alone. A couple of years before his diagnosis he was suffering from mild depression, which we now believe was part of the coeliac thing. Sounds very similar to your dd. Hope you can get some help. If she is positive, you will also need to get family members tested - there is often a genetic element. A few other members of DH's family have it - his Mum, our niece, two uncles and (undiagnosed), probably his grandad.

I would go and get a second opinion, take with you a food diary and list of all the symptoms written down (specifying what appears on what day - even all of them on each day - you can never have too much detail!
My DD was diagnosed at 18 months, with similar symptoms, the worst part is that she received her diagnosis before I did- at the age of 32!
My DD didn't have "failure to thrive" but had slipped down her growth chart gradually and had all the other symptoms. She reacted so strongly to gluten that she came up negative in the blood test as I had to take her off gluten as she was in such pain, however, when I got my diagnosis they agreed to do a genetic test on her which came up positive, so with the symptoms they diagnosed her.
Personally, I was actually overweight when I was diagnosed (which happens as you constantly feel hungry). Also have experienced the moodiness, anxiety and mild depression that they are starting to link with the disease. Go with your gut feeling on this and push!!!!

You may be able to use the heart murmur referral to bring up the question of coeliac. If an appointment comes through fairly soon I'd try that route first - if nothing else they may be willing to order the blood tests. Around here we'd have to take a child up to the hospital to get blood taken anyway even if the GP ordered the tests.

Agree that you should keep her on a "normal" diet until tests have been done, otherwise you end up with a child getting so much better but needing to go back on gluten for definitive diagnosis.

Best wishes, story does indeed sound very suggestive to me.

Ate you checking her height growth?
It s how many cm she growing every three months
Yes my dd was v moody pre diagnosis .
Keep asking for the blood test

Push it please. My three year old was so ill and we went to our gp four times in a few months then took her a fifth time to another gp and my husband took her and demanded the get referred for blood tests. They said coeliac wasn't likely. By this point she wasn't barely eating. She tested positive for coeliac. Her two sisters were also tested and the eldest also has coeliac. My little girl has really suffered and is an incredibly sensitive coeliac. She barely eats now because of her association with food with pain.

Yes - go see a different GP.
It took me a year to get DD diagnosed (bowel problems for a year) and they only listened to me because she couldn't start school with no control of her bowels.

And after all that it was a blood test! That's all they need to do at this stage, it's not just about diagnosing it but also ruling it out if it's not. Means you can move on a look elsewhere or go get it sorted - annoys me now we had a year of hell for the sake of a blood test.

Also DD never had problem with thriving, she's always been on 75th centile for height and weight.

My Dd is 5 she was diagnosed coeliac at about 18 months. As well as frequent bowel movements she also was sick regularly. She was moody, disinterested and lethargic. Although she wasn't officially failing to thrive she was a very low weight and sliding down the centiles rapidly.
We had to push push push all the way for blood tests. And then when they came back on the fence push again for a biopsy. Biopsy results showed she was severely coeliac. We were on the verge of going private as GP and hospital were largely unhelpful and unwilling to listen to our input. We knew in order to get a positive biopsy result we had to continue to feed her gluten this was really hard as at that time I was more or less certain that it was the cause!
I would strongly advise you to keep pushing. See a different GP and demand a blood test. Then go from there. Good Luck!

Thank you for all your responses! I am writing a diary of all her symptoms day to day and I'm going to book her another aopointment with a different better Gp on Monday.

I will not be leaving the GP's office until they refer her, nobody seems willing to look at the bigger picture. I do keep wondering how seriously they would take it if we went private! Unfortunately that's just not an option for us.

I'll update once she's been seen again