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

thats good-definitely a step in the right direction!

Thanks waitingforgodot. He was delighted to hear that he has pizza for tea tonight. I have had to go to the shops especially to buy gluten laden food, as I had stocked up on lots of fresh fruit and veg thinking we would be taking him back of gluten at the end of this week.

Personally, I find it amazing that he still wants to eat the stuff when he knows how poorly it makes him, but he does. Fortunately he doesn't mind the majority of gluten free alternatives and is happy to have home made gf pizza when he is gf.

I'm not looking forward to next week, as we have to make sure he has plenty of gluten before the test and he will be back on normal bread for packed lunches, porridge for breakfast and something containing gluten for tea (probably a lot of pasta, which is his favourite food). We are bracing ourselves for a very difficult week, probably followed by a bad week the week after the test, but hopefully, if the test is positive we can cut out the gluten after that.

I'm sure I will have a fight on my hands when we refuse the biopsy, but there's no way I am going to keep him on gluten for several more months while we wait for an appointment. To be honest, I'm not happy putting him through a general anaesthetic for a procedure that just backs up the blood results. I have read several studies online recently in which they suggest that positive tTg results should be accepted as evidence for dx and particularly in children, there is no need for any further testing unless the initial results are inconclusive.

Hi mm, the reason why your ds likes to eat gluten foods is that in those affected they create addiction-like symptoms (undigested gluten acts as opioid on the brain), hence also withdrawal symptoms.
I hope the tests are conclusive for him, but bear in mind that the so-called gold-standard is based on severe symptoms and significant damage and there is a broad spectrum of gluten sensitivity that blood tests don't pick up. My ds blood test was negative, but it also came with an annotation from the lab that for under 16s, these tests are frequently inconclusive. We declined biopsy as my ds responded so well to the diet that I couldn't put him through gluten AND biopsy and paed agreed. We had then been referred to a nutritionist and have access to gf products, but in all honesty, you cannot live on them alone as they are all just carbs and highly sweetened and to be healthy you need balanced diet and here we try to eat low carb anyway.
Also, not sure of your reasons for being vegeterian, my ds was too, but this was b/c gluten suppresses digestive enzymes, my ds was restricting his foods to carbs alone. When tested for aminoacids, they were all deficient. We had to go back on proteins, starting with eggs. After 4 years of gf, he now eats small amounts of proteins and his aminoacids are just about in the normal range. The protein derived from quality meat is easier to digest and absorb than those in beans, nuts or grains. If you stay vegeterian, then you need to supplement quite a bit, vit Bs, Zn & others.
I am sure if you describe the symptoms your ds has when on gluten, any sensible dr will not force you to force it down his throat. Paed will probably be more understanding than GP.
Another brilliant book is here

My DS was eventually diagnoised via blood/biospy in October and settled down in about 2 weeks, if he has Gluten now (school are good at this - Playdough, chicks in class ) then he is out of sorts and ratty as hell for about 3 weeks.

The biospy also checks the large bowel and just how bad the damage is - they think my DS has been coeliac since birth but was just 7 when confirmed, since then he has grown 2" and a shoe size.

The doctors where crap (we where initailly private and got bounced back to NHS) Even now they don;t seem very clued up on it, found more out by forums/coelaic UK.

Hi nightcat. Thanks for your reply.

Dh and I have been veggie since we were very young and chose to bring up our dc's the same way. We have never forced our ethics on them though and figured that if at any point they asked to try meat we would let them, but ds1, being an avid reader has read about food/meat production (apparently there was a book on the bookshelves in his class at school ) and made his own 'very strong' views about meat production/consumption crystal clear to us. There is no way we could make him start eating meat he verges on the obsessive about it. (Ds2 is a different matter, he just loves food and would probably eat anything we told him to.)

He doesn't seem to obviously react to dairy products, but does tend to become intolerant to milk products following any bouts of illness.

We have a pretty healthy diet in general and eat eggs and dairy products as well as tofu, lentils, chickpeas etc.

While he was gf, we gave him the genius gf bread and the odd gf cake, but in the main we tended to make our own cakes/biscuits/pastry rather than buy the commercial stuff which seemed to be full of fillers, sweeteners and sugar. We did buy him the brown rice pasta though as it would break his heart not to have pasta.

We already give all the dc's a good quality multivitamin supplement, but would really like to be referred to a dietician to get more specific advice about our diet.

Fortunately the GP we see is brilliant. Her own daughter has similar problems to ds, so she is very sympathetic and supportive. Sheer luck that we saw her on the day we went to discuss having him assessed as we have a very large surgery with lots of GPs.

Thanks for the book suggestion. I will add it to my ever increasing list. (I currently have 6 books on ASD, Coeliacs and Nutrition on my bedside table. )

Hi notapizzaeater.

I'm still not convinced we should go for the biopsy if he tests positive. If you don't mind me asking, how did your ds cope with the procedure? Just the thought of putting him through it scares me. As far as I'm aware, the gut will start to heal after a few months gf anyway and there is very little, if anything, they can do about any damage that has already been caused, so it doesn't feel right for me to put him through a test which won't actually affect the treatment iyswim.

Ds grew astonishingly when he came off gluten. He went from barely going up a shoe size a year to going up a shoe size and a half in three months! He also went up two trouser sizes. He is the smallest boy in the Junior School, bless him and is towered over by some of the infants. It never bothered him being small when he was in infant school, but he's become quite self conscious about it since starting Juniors. (Not helped that his best friend is the tallest boy in the year!)

He has a pathalogical fear of needles (egg allergy and was pinned down for this at 2.5 yrs) so had a pre med. He was fine actually and bounced back straight away, so much so went to school the next day and had his 7th birthday party 2 days later !

Genius is the only bread he will eat. The rice/corn pasta is fab and we all eat this now.

He had to have the biopsy because they didnt think he was coeliac in fact the the doctor was very surprised about this, he is tall looked healthy but had continual diahorrea all the time - accidents at school, behavoir.

Our school needed the piece of paper to make allowances for him

Normally takes about 2 weeks from having gluten before he can tolerate milk again.

Thanks for sharing that with me. None of mine have ever had a general anaesthetic and I hate the idea of him being taken off somewhere biopsied and brought back afterwards.

I know its daft as children generally cope with these things better than adults and don't tend to dwell on them, but I can't seem to help it. I nearly lost ds2 to flu followed by encapsulated pnuemonia just before Christmas 08, when he was 4 years old and went through hell with him in hospital having to hold him down for canulas and medications etc. It was really traumatic for us both (in my case not helped by being 8 and a half months pregnant at the time) and I think its left me over anxious about medical procedures and my dcs in general.

Obviously if the test results aren't clear we would have to consider it, but as we will be putting him back on a gf diet anyway, I don't want to put him (or me ) through it unless its absolutely necessary.

Fortunately our school has been pretty accommodating of the whole gf thing despite him not being tested. I think having seen him both on and off gluten, they know its in their interests as well as his to support his dietary restrictions.