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.

Ask them what they think a food diary is going to show?

Because people eat gluten every day and for some coeliacs symptoms can have a delay of up to 48 hours so actually a food diary wouldn’t be helpful. She needs a blood test with a definitive, objective answer.

What jacobrees said. A food diary is NOT a diagnostic tool for celiac, and not even for non IgE allergies. Ask them to point to where in NICE guidelines for either celiac or non IgE allergies a food diary is suggested as a diagnostic tool. The symptoms in either case are prolonged, and not necessarily immediate.

God, you're encountering some right eejits. Keep going, OP, stand your ground. With her symptoms, surely someone should at the minimum be ordering full blood panel and celiac test, to screen for the reason for her lack of balance, jerking if nothing else!

You can also contact the hospital patient liaison (PALS) from within the hospital if you feel like getting shirty. I've used PALS to help push things along a bit before (though not within hospital) and it's always been a v.helpful process. Seems to help get things done!

Thank you both! I started down the NICE route and as if by magic a senior consultant appeared and we got bloods done. I understand they’ve to be tested for coeliacs, thyroid and anemia. May I never have to hold a three year old steady for bloods again..... 😢

Hahahaha (evil cackle) - glad my NICE trick worked. You really need to know stuff like B12 as well, but they well be doing full blood panel and covering it. It's a start, at least. And if you rule out celiac, you can still take a a look at non IgE allergies through structured exclusions.

Sorry the bloods were a trial - hope they gave her numbing cream beforehand?

Really, really well done, OP - not easy to hold your ground in those circumstances.

Let us know how you get on, won't you?

I appreciate it, I wouldn’t have known to mention it. They are just off the phone to say the ones they could test in house are all within the normal range. So liver, kidney, thyroid, all fine. They couldn’t test for anemia as the blood sample for that was clotted or had a clot? So that hasn’t been answered although they are saying her general presentation and colour makes them very doubtful she’s anemic. Will be up to four weeks for the coeliacs and immunoglobulin results as they have been sent to a lab elsewhere. Feeling very pleased with myself for getting us to bloods, although at the moment we are no further forward. No one has mentioned B12 and I’m not sure what that is?

B12 is a vitamin - quite common to be deficient if your gut isn't absorbing nutrients (eg celiac). Deficiency can cause, among other things, muscle weakness and ataxia (balance probs, shakes etc).

Don't worry - am sure you can push for that at a later stage if it's not been included this time. One step at a time.....

Have a peaceful rest of day xx