WHAT on earth is this?! At my wits end

[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.

Hi

As a paediatrician, let me assure you that coronavirus has not stopped us accepting referrals to see children with illnesses. From your description, I would think it is best for you to be referred by your GP to a paediatrician but I should qualify that by saying that I am only going by your post and.yoir GP will be making the decision with actual knowledge of your child.

Please speak to your GP and ask if a referral to a paediatrician is warranted. If it is, your GP can refer you to your local paediatric service and they will assess your child. Ask them directly about coeliac disease. I never mind when a parent asks me about a particular diagnosis. Even if it's completely wacky, I'd rather know they are worried about something and I can hopefully put their mind at ease. And coeliac is not an unreasonable condition for you to be considering.

Good luck and absolutely agree with you about not going gluten free without proper advice and monitoring from a dietician.

Thank you for your response, and for the encouragement to keep chasing it. I will try for an appointment with a different GP I think, as the one we had this week although perfectly pleasant told me quite clearly that she has been asked not to make referrals to clinics or order investigations that are not urgent. I do appreciate that we are in unusual times and in truth it’s not ‘urgent compared to what’s happening. Selfishly it’s just incredibly difficult to see something be wrong with my child and not addressed.

A blood test would rule out/confirm Coeliac so I would push for this. My son has just had his bloods done during lockdown, it was not an issue at all. Good luck!

Yes a simple blood test can check for coeliac, your GP can do this even under the current circumstances.

Have you thought of just cutting out food containing Gluten for a few weeks to see if it makes any difference.

I can assure you that it is not hard to eat gluten free and providing you avoid ready meals etc the gluten will not be missed. The only times I buy “gluten free’ foods are if I fancy bread or pasta and there are lots of supermarket versions of those if needed. Warburtons, M&S, Waitrose GF bread is good, as is Sainsburys pasta.

If cutting out gluten helps you can then discuss the changes it has made when you eventually get to see someone.

My surgery won't do bloods on children so we had to go to our local children's hospital. The GP left me the paperwork and I just had to call up to outpatients and make the appointment. We were seen in less than a week.

Have you thought of just cutting out food containing Gluten for a few weeks to see if it makes any difference.
Please don’t do this. The blood test won’t work if she stops eating gluten. It will be very difficult to diagnose a condition that you’ve “cured” because if she gets better there won’t be any symptoms to observe.

Have you thought of just cutting out food containing Gluten for a few weeks to see if it makes any difference

I have thought of it! But my understanding is it would really impact on the ability to diagnose a gluten related illness because effectively I would have ‘solved’ the problem. It’s also not recommended to stop a food group for your young child without guidance/support of a dietician. Thank you though.