Help back on gluten for test but don't think we can keep this up

[moosemama]

Hi

Ds1 was taken off gluten back in November last year on the advice of the gp to see if it helped with his digestive problems and poor growth.

I should also point out that at the time we were waiting for an appointment for assessment re possible Aspergers, but although I was aware of the possible link between gluten and ASD, that wasn't the reason for removing gluten from his diet.

Well the results were amazing. After an initial worsening of symptoms, both physical and behavioural, he really started to improve. He was calmer, less reactive, greatly improved eye-contact, generally more sociable and cuddly and went up two trouser sizes and a shoe and a half size (his feet hadn't grown for over a year previously).

I then came on here for advice as he seemed to slip back and had some problems with school. Subsequently we discovered that he had been inadvertently been eating gluten fairly regularly for the previous 3-4 weeks. We removed it and were extra vigilant and once again he improved.

He was seen by a paed in January and given an informal/verbal dx of Aspergers. We are currently waiting for his formal assessment with the local specialised ASD team.

While we were there, the gluten thing came up and the paed felt, based on the results of the exclusion diet, it would be appropriate to have him tested for coeliacs. His appointment for the test is 6 July.

Unfortunately this meant that he had to go back onto gluten for at least three months prior to the test, in order for there to be a high enough level of anti-bodies in his system.

BUT It has been a total nightmare. I feel like I have lost my lovely boy, having only just got him back via the exclusion diet. He is hyperactive, yet spacey, oppositional, defiant, rageful and has almost totally lost eye contact again. He has also been vile towards his younger brother who today came to both myself and dh separately sobbing that he doesn't like ds1 anymore because he is "mean and spiteful and hurts me". So sad when they have always been so close. To cap it all, he has even been mean to his baby sister today and he normally idolises her and wouldn't dream of upsetting her in any way.

I can honestly say that he is worse than he ever was before we did the exclusion diet and dh and I are struggling to cope with his behaviour. Life has descended into a sort of shift-work/rota type thing, with each one taking their turn until they can't cope any more and hands back to the other.

In short, the whole family has been hugely negatively affected and I see in quiet moments that he is suffering so much himself, as he doesn't understand what is happening to him, why he's behaving this way and why Mummy and Daddy are so cross/stressed all the time.

I don't know what to do. My instincts are to just take him straight back off the gluten, but I was told that undiagnosed coeliacs has all sorts of negative health implications and I must have him tested. Honestly though, I don't know how much longer we can carry on like this. Certainly not until July.

Has anyone else been through similar, or does anyone know what the implications would be if we just took him back off the gluten and asked to see a dietician instead of waiting to have the test?

TIA

Just want to say you have my sympathy and I'll be watching this thread with interest. I took my son off of gluten recently (not really expecting anything to happen) and it's obvious that it is an issue and so I need to put him through the testing process and I can hardly face doing it.

Thanks 4nomore.

I am totally shocked at how much worse he is now after being put back on the gluten. He is so much worse behaviourally now than he ever was before the exclusion diet, I barely recognise him.

I've not been in this position personally but a friend of mine has. They decided against reintroducing gluten (they had removed it themselves). The hospital at first had the child down as suspected Coeliac but after a while did change to a confirmed diagnosis as the evidence spoke for itself. The DC was a toddler and the family felt they could not knowingly give the dc something that was making them ill for the sake of having a confirmed test result.

I think from a clinical pov it sounds very easy - just 12 weeks of the gluten, have tests, get results. But they don't have to live with the fall-out from that (child in pain etc).

To turn it on its head, if you kept to the 12weeks of gluten and the test came back negative, would you keep gluten in his diet or remove it?

I have to say first of all that I don't know a lot about coeliacs but I thought that the only treatment was a gluten free diet. If this is the case (and no other treatment necessary) would it matter at this stage if you got a diagnosis or not since you intend to stick to a strict gluten free diet. It might be worth discussing this with the GP or better still the pead. stressing the big deterioration with the re introduction of gluten. Ask if testing could be put off till a (much?) later date if a positive test would just mean returning to a gluten free diet which you intend following anyway. Just a thought.

Good point, notfromaroundhere. Obviously with the severe impact the gluten is clearly having on his behaviour and emotional state we won't be keeping him on gluten after the test.

If he doesn't get tested though and is in fact coeliac, I just can't seem to get my head round the long-term implications.

I assume as long as he doesn't eat gluten, the health implications are negated, but I haven't got any firm evidence for that.

Unfortunately, many mainstream health professionals have a hard time accepting the link between gluten and ASD or behaviour and obviously removing gluten from a child's diet is a huge undertaking and has health/nutritional implications of its own.

I have tried to call the paed to discuss this, but haven't managed to reach him so far.

As you said, we are essentially having to poison him for the sake of getting a diagnosis and it just doesn't seem right to put him through it.

Thanks, NKfff.

Only problem is, as I said, a lot of health professionals won't accept the link between gluten and behaviour and they seem intent on a diagnosis being vital even though they know he was already gluten free.

I don't know if this will help but I removed gluten from diet die to bowel issues (nothing to do with ASD). Once the Dr found out my symptoms were nearly all gone whilst off gluten (and wheat) he said I should get a celicas test and do the "challenge" for 12 weeks.

I did it for precisely 3 days during which I literally couldn't walk/barley talk and was sick everything I ate.

I thought to myself what's the point. If it is celiacs disease I'll be cutting out gluten. If it isn't celiacs disease I'll still be cutting out gluten. The only advantage to a DR telling me I have celiacs is that you get food vouchers towards the cost.

Gluten and wheat are both essentially toxins that have no "real" nutritional value, it's normally found in processed foods and although a protein the processed-ness negates the good protein - far better to get protein elsewhere I feel. It's very different to removing dairy from a child's diet for eg IMO.

Thanks navyeyelasH.

The only complication I can see to removing gluten from his diet long-term is that we are all vegetarian, so its tricky to get enough protein into him as it is. We would definitely need him to be referred to a dietician to get the nutritional balance right in his diet and I'm not sure how supportive the doctors would be of that if we cancel the test iyswim.

If gluten hadn't been removed from his diet then the test would make perfect sense. But it was removed, you saw the results, you reintroduced it and have those results, so with that in mind I would be in the go back to gluten-free now camp. I know it makes it more difficult for the paediatrician to diagnose but it can be done - particularly as you have evidence of growth (think that was the main one for my friend's DC, they gained weight and grew in height etc). But ultimately, whilst we try and work with the professional's, in this instance, following their advice is possibly not right for your son and you all as a family.

TBH they probably wouldn't be supportive at all, but my experience of drs is very negative! Would it be worth asking your doctor or finding a private nutritionist?

I look after a little boy with autism and I know his behaviour is totally different when certain foods are removed from his diet. His parents have done this off their own bat not alongside their GP. But they aren't veggie.

You can still get protein from nuts, seeds, pulses, gluten free cereals, soya, milk, cheese and eggs depending on how veggie you are. Also some flours are fortified with protein so you can make bread, pancakes, cakes etc.

Protein is very important for a growing child so I can see why you are worried about this. I suppose it's a balance 9test v behaviour) that only your family can figure out.

cross-posted. Re dietician, as it was your GP who suggested Gluten-free could he not refer you? I would expect a reasonable paediatrician to refer you on, not sure they can refuse you for declining to persue a test.

Thank you for all your replies. You have confirmed what dh and I have been saying/thinking and reassured me that we wouldn't be being rash in taking him back off the gluten.

We were mainly worried that by not getting him tested and dx we would be exposing him to some terrible health risks, but as you rightly point out, even if he is dx they will just treat with a gluten free diet anyway.

I have just been discussing it with dh again for the millionth time and we've decided to take him back off the gluten. We will pay to go private for nutritional advice if we have to. We can't afford it, but neither can we watch or be the cause of his suffering anymore.

We are going to try and get hold of the paed again and asked to be referred on, he's a really nice guy, so hopefully will be sympathetic especially as he saw and assessed ds when he was gluten free and still dx Aspergers, so should appreciate how much worse his behaviours have become since then (we have kept a food/behaviour diary since the reintroduction).

That sounds like a good plan to me OP. If your son does have an allergy/intollerance to gluten it will be effecting his whole system which can cause massive long term damage. When I looked into it I just decided it wasn't worth the risk. I have been gluten free again for about 4 months now and I can still feel the effects of gluten on my body; it takes a good while for your body to shift it completely. It's pretty crazy.

Gluten intolerances/allergies are also usually tied to dairy. So maybe once you've got your head around gluten free it might be worth investigating diary. You can also get amazing probiotics (actual real ones not drinks from a supermarket) that help enormously.

When I was eating gluten I had such a weird brain fog, it really baffles me that so many people don't believe in a brain / gut connection.

I think the only benefit of a diagnosis would be that you'd get gluten free flour, biscuits, etc on prescription. I'm fairly sure that GP's are not allowed to prescribe these without a confirmed diagnosis. I'm not sure I'd put my child through 3 months of hell for the sake of a diagnosis even if it got him free gluten-free foods. Is it worth asking them to consider testing after a shorter period?

Whatever the reason for changing his diet it is still restricted and you are still entitled to consult a dietician. I would push for an NHS dietician appointment before paying for something you can't afford.

Been to bed. Couldn't sleep, so here I am back again.

Navy, we already give him proper pre and probiotics and supplements and whilst he was gaining weight (and height) nicely when he was off the gluten, he has gone right back to a skinny little wraith in just under two months of being back on the dreaded stuff.

Al1son, they won't test after a shorter period of being back on the gluten as false negatives are very common due to low antibiodies.

PipinJo, that's really interesting re the Sunderland Test. I had been mulling it over, but if truth be told am terrified of being told he has a problem with casein as, being veggie, I can forsee all sorts of problems if we had to remove dairy as well.

I suppose he would be almost vegan (except for eggs) then and I can't see him accepting that without a fight, although dh and I would be quite interested in trying a vegan diet ourselves.

I have been on their website, but couldn't work out how to arrange the test. Do you have to call them? Will they do it/will it work, even though he has only been back on gluten for two months? - Sorry, so many questions.

Ds didn't really have any obvious stims prior to going gf but he sensory seeks with his feet, which sounds irrelevant but can be a right pain (think constantly stroking his baby sisters' head and face with his bare feet, bare feet on the dining table at meal times, bare toes constantly prodding his brother etc etc). Since going back on the gluten though he has started really smacking himself in the head when he gets upset as well as hand flapping and 'dancing' (ie hoping continually from one foot to another). He also finds it almost impossible to stay still and calm. In fact about the only time he sits still is when he is on his Nintendo Ds, he even contorts and wriggles constantly when he's deeply engrossed in a book. Its pretty tought to get him to make eye contact now as well, he is almost always staring off into the distance and its hard to get him to focus and listen to what you are saying to him. Most upsettingly for him is that he has started bed-wetting again. He didn't wet once the whole time he was gf, but it started again the first week he went back on gluten.

I read the 8 month timescale somewhere as well. Its such a shame, as we were already halfway through with him and he was so much better and now he'll be back to square one.

Sorry to ask more questions, but, just out of interest, could you 'see' when your ds's gut had been affected? Ds seems to get this horrible green stripe, about 4 inches wide, right down the centre of his face. At first we thought it was only when he had a migraine coming on, but then we noticed it when he had they hiccup with eating gluten we weren't aware of over a three week period. I asked the gp about it and tried googling, but couldn't find any reference to anyone else having similar signs.

I've heard that with children who develop full-blown gut symptoms on very little gluten the test is more likely to show positive more quickly.

My son just had the Sunderland test and it cleared (more or less) him for casein which I was very pleased about. It suggested he does have a problem with gluten (I'm convinced of that anyway) but the only thing is there was a "peak" (some substance being excreted) that they couldn't identify) and if I understand their interpretation correctly they seem to suggest that eliminating gluten may not deal with behaviours linked to this substance. To be honest, although he's autistic and his attention etc could do with improving, it's not so much behaviour as the nasty bowel effects I'm looking to sort out.

Hi there, I chose to put DS (aged 3 -ASD diagnosis) on a gluten free diet as he was stimming a lot and hitting himself. I also felt I couldn't fully eliminate dairy so have swapped cows milk for goats milk (easier to digest apparently). He still has these tiny pots of fromage frais and some butter in his diet. However I reintroduced cheese last week after nine months and he broke out in eczema all up his arm. Not sure if its coincidence but have eliminated it from the diet. We were told by GP that we couldnt get foodstuffs on prescription as we had chosen to put him on this diet. We did request to see an NHS dietician who was really helpful. Sorry for waffling. I think you know whats best for your child and if that means changing his diet right now then so be it. As the other posters have said, a diagnosis of coeliacs means a gluten free diet. I would ask for a referral to a dietician as they can advise you if you need to supplement.

Thanks for your reply waitingforgodot, its interesting to hear about other's experience of the same thing. You didn't waffle at all.

I have just found out on the Coeliac UK site that you can buy a home testing kit which doctors say is 95% effective at identifying coeliacs and if you test positive then its worth going for further testing. I also read on the same site this morning that you need to have been eating at least two gluten containing meals a day for 6 weeks for the blood test to be effective, so not as long as we had been told.

Ds has been back on gluten since the beginning of March, but we were only introducing it gradually at first. In theory we could try and get them to do the blood test in about a fortnight and, given the severity of his reaction to the reintroduction, he may get a positive from that.

I think I might buy the test anyway (its £18.99) and see what the result is. If we got a positive test off that it might help us to get the medical/dietary help we need.

Hmm, am not sure what to do again now. Two weeks is just about doable, two months is definitely not.

Just to compound it we are having a dreadful morning. He wet the bed again, as he has 4-5 nights a week since being back on the gluten and has had a total uncontrollable meltdown that lasted ages and involved him screaming like he was being murdered, hyperventilating and running around the house in a total panic all because part of his lego model broke up as he was building it.

He is now running around being totally hyperactive, banging and crashing about, yelling at the top of his voice and tormenting his brother to the point of tears. Its like having a giant toddler about the place. Its not like him at all, he is usually a pretty quiet child, into chess, lego, reading, computers and maths. He has his moments, as all children do, but nothing even approaching this.

We are supposed to be going out for the day with my Mum today but I'm really worried about how he's going to behave.

I have never seen him like this, its breaking my heart.

Its a tough one moosemama.
Only you can decide on the best course of action. I personally, (and its only my opinion) would give up the gluten today.

I took DS2 off gluten and dairy when he was 3 and the results were fantastic. I tried to get the Drs to support but they were considerably worse than crap. I was told I needed to re-introduce gluten to get him tested for coeliac disease but refused.
The only down side was that I have to buy GFCF product but the prescription stuff was terrible anyway so I don't mind too much.

Have you thought of trying to get nutritional support from some of the groups /websites for parents doing the diet - like AiA and gfcf uk?

I have received much better support and advice from other parents than from any of the medical professionals.
BTW DS2 is 13 now and very healthy and happy

would really recommend treatingautism.co.uk

Hi, thank you all for your replies. Sorry I disappeared I had ds2's birthday party at the weekend and then gearing up for school, which in itself has been really difficult with ds1's current behaviour/mood.

We received a letter on Friday saying his appointment with the Paed (when they were going to do the test) has been put back a month to August. There is absolutely no way we could keep this up until then and we are actually on holiday on the new appointment date anyway.

Then on Saturday we got a letter from the ASD Assessment Centre saying he is on a long waiting list but not giving an indication of how long. I left a message for them asking if they could give me some idea of timescales and they called this morning and said realistically, it will be 12 months until he is assessed. Frustrating, as the paed told us we would definitely see someone before our next appointment with him. No point in getting angry with them though, they are massively oversubsribed having been set up initially to do 40 assessments a year, but currently having a minimum of 130 to do.

He ate pizza and garlic bread at his brother's party on Sunday (he had been really looking forward to it) and was so ill afterwards. Really explosive watery bowel movements, dizzy and lightheaded, followed by really low mood and lots of tears and anxiety in the evening.

So, I have a telephone consultation arranged with the gp that referred him for ASD assessment this morning. Am sat here now waiting for her to call. I'm hoping that as he has been eating some gluten every day since 1 March she will arrange for him to have the blood test in May.

Scratch that. The GP just called.

She was lovely, really understanding and supportive.

She recommended we test him now as he has been eating some gluten every day for 6 weeks. So has left a blood test form and prescription for emla at the reception desk. She is asking for the tTg Coeliac specific test rather than just the IgA + IgG test and said if its negative or inconclusive, she suggests keeping him on a fairly high level of gluten for one more month and retesting.

She did say that they would probably request a biopsy if its positive. Dh and I don't really feel that this is necessary though and I've read quite a bit online from an increasing number of doctors who also think a high tTG reading is enough evidence for diagnosis. Still, we will cross that bridge when we come to it I suppose.