To think you shouldn't mistake potential Coeliac disease for Aspergers

[PrincessHoneysuckle]

A mum friend of mine has been taking her 2 year old dd to the drs a lot over the last few months with a lot of symptoms inc. Shaking,crying in the night,looking through her instead of looking up or answering when her name is called,rocking,not playing.

Gp was adamant that she might be somewhere on the spectrum and has put a referral through.Friends mothers instinct told her that she felt it might be something else so she did a lot of googling and cut out gluten,barley,rye, wheat and processed foods out of her diet.

In the space of a few days dd doesnt shake,slept through in the night for the first time in months and answered to her name and has played with her mother.
She is now having blood tests tomorrow to see if she is Coeliac

Are her symptoms of Coeliac rare does anyone know?

I just wanted to put this here to get advise from parents who have been through this or are going through the same.

The reason I put Aspergers in the title is because this is what the gp thought she was specifically

To my knowledge coeliac disease doesn’t present like that. It’s a gastrointestinal disorder, it doesn’t cause psychological or behavioural symptoms. The child may also have a gluten intolerance as well as autism and many people find that a gluten free diet helps autism. But coeliac disease on its own wouldn’t cause those symptoms, sorry.

Here are the symptoms of coeliacs
www.nhs.uk/conditions/coeliac-disease/symptoms/

It’s my understanding that test for coeliacs doesn’t work if the person has already excluded gluten.

People with Aspergers do have higher rates of gastric diseases.

If her mum has cut gluten out of her diet, the test for coeliac will now be ineffective.

ASD can involve a lot of gastrointestinal symptoms. In the mum’s shoes I would still want both assessments done thoroughly.

Oh right thanks.She is so adamant that the drs got it wrong as the symptoms pointing to Aspergers have gone.

Autism and stomach and digestive issues have a connection. A lot of people find eliminating certain types of food is beneficial to autistic people. My dd has asd amongst other diagnosi and limiting gluten works well for her. Shes not coeliac.

I'm surprised that when she said to the dr that it pointed to just Coeliac he didn't explain that to her.Her eldest had a mistaken diagnosis of autism a few years ago so she hasn't got much faith in them.

The coeliac test won’t work if she’s already excluded gluten. She needs to tell the doctor snd will be advised to eat gluten for at least six weeks before testing.

I'll tell her about the blood test needing 6 weeks of gluten

If a GP didn't refer a child with those symptoms to a specialist to check for autism-related issues, the parents (and the OP) would be complaining about that. The paediatrician the child sees will consider a wide range of possibilities, including things that might not have seemed obvious (my DS was referred for migraines and joint pain and the consultant very quickly determined that it might be coeliac disease - she was right).

It's perfectly possible to have both coeliac disease and autism. And for the gastrointestinal issues caused by one to exacerbate the issues of the other (because we're all less able to function effectively when we're in pain).

The thing about Dr Google is that it can actually make proper diagnosis harder. As in this case where a child on a GF diet will always test negative for coeliac disease. It's just not a substitute for an assessment by a qualified and experienced doctor.

The neurological symptoms of coeliacs disease are rarer than the gut symptoms and are pretty poorly known tbh. Until relatively recently I dont think they were even recognized.

Her eldest had a mistaken diagnosis of autism a few years ago so she hasn't got much faith in them

She wouldn't have got a diagnosis from the GP though. A referral yes. Getting an autism diagnosis is a long, hard process involving many different professionals.

You shouldn’t cut out gluten before being tested for coeliac. You should be eating a fair amount of gluten every day until the test is done if you want an accurate result.

Some people do test postive for Coeliac without having obvious gastrointestinal symptoms.

Lots of people with ASD have gut issues as well, they can sometimes feel better on a gluten free diet even if they’re not actually coeliac.
My Dd was diagnosed with Aspergers and she was once tested for Coeliac, test came back negative.

It's all such a minefield she just wants her daughter back ifkwim

It won't be the first time coeliac disease is wrongly thought to be ASD.

Coeliac disease can be responsible for so many symptoms, often differing between children and adults.

Many parents comment about positive changes to mood, behaviour, concentrations, alertness after being exhausted, easy to become bad-tempered/angry, sleep disturbance after a coeliac diagnosis.

It's known that adults with undiagnosed coeliac disease or badly managed CD suffer more with mental health conditions, including gluten induced psychosis. It can lead to depression too. It can cause ataxia, myoclonus and other neurological conditions, as well as vision problems.

Adults and children can easily become malnourished or vitamin and mineral difficient causing a huge array of symptoms.

There is a Facebook group, Coeliacs in the UK, check on there and you'll find quite a few who were being tested for ASD but actually have undiagnosed coeliac disease. (I'm not on Facebook so can't link to it, sorry)

@PIPESA so there is a chance it's just Coeliac and not anything else? Interesting

My niece has coeliac disease and changed a lot once she had her diagnosis, she was always very emotional before and not always quite ‘there’. She’s now far more regulated. My uncle gets memory loss if he accidentally eats gluten having been diagnosed as coeliac many years ago now.

Like others have said though, she would need to have been eating gluten regularly for the rest to work.

It could absolutely be just coeliacs, although problems w gluten and autism do often go together.

@PrincessHoneysuckle yes, it could be coeliac disease. Make sure, if having the blood tests/endoscopy, that they are eating gluten for a minimum of 6 weeks prior to testing as gluten is needed to cause the reactions they are looking for.

The Facebook group (Coeliacs in the UK) is very informative, as is the national charity, Coeliac UK.

I know being gluten free is a trend at the moment as generally people think it is a healthy way to eat - this Is only true if you either

a) you go gluten free and substitute for fresh ingredients and eat a well-balanced diet and not the specially (heavily) processed 'free from' foods which have very high salt and sugar levels or

b) there is coeliac disease or non coeliac gluten intolerance (NCGI) present or if the person has gluten ataxia or other health related gluten sensitivities (as in my earlier post)

I hope your friends little girl I soon helped and that she feels a lot better soon, whatever the cause. Please let me know how she gets on, I'd be interested to hear how she is.