Not sure if I'm being neurotic about DS aged 3

[clucky80]

My DS is 3 and has always been quite a skinny child on the pale side with eye bags (his dad has them too). I had wondered about allergies before and he was tested for a few different allergies as he was reacting to tomatoes but grew out of it. Nothing came out of it apart from tomatoes but as far as I remember he wasn't tested for wheat.
He doesn't get ill very often, only the usual childhood illnesses from nursery and he hadn't actually vomited since he was a baby - if he had an upset stomach it would come out the other end (tmi!). In the past month though he has had 2 illnesses with vomiting a couple of times and high temperatures. He has recently also noticeably lost weight. We have noticed blood twice on wiping although it was bright red, small amount and we presumed a little tear. He has very frequent bowel movements - often on the softer side. He is currently extremely tired to the point where it is hard to get him off the sofa. He did however go to nursery yesterday and they said that he was his normal self and ate well. Today he is back on the sofa. We have noticed a change in his behaviour - he has been quite erratic and very up and down especially with my DH. For example, last night he woke up screaming and shouting and calling for my DH but when he went in DS was trying to hit him, saying he wanted to hurt him and the next minute asking him to stay in his bed with him. It has reached the stage now where he looks dreadful - like a child with anemia I think. His neck is full of glands too. He just doesn't seem right. All of these things can be logically attributed to something else but listed together may point to something ifykwim. We have a history of type 1 diabetes (me), coeliac (my dad), leukaemia (I have no idea if this is hereditary but my dad lost his sister to this when she was 18, my gran (her mother) also had it.
I took DS to the gp yesterday and I have to go back today with a urine sample. I also have to wait a couple of days for a letter for a pedeatrician who will arrange blood tests. The GP said he has a bit of tonsillitis and has prescribed him AB's. She dictated a letter and she listed the behavioural change as the first issue - I'm not sure if this is significant at all.
I'm having moments where I think oh he's fine just a bit run down but then other moments when I have a blind panic thinking 'what if he isn't?'. I'm not sure what I'm hoping for in writing this but it's good to get it down.

I am sorry I can't offer any advice but didn't want to read and run. You are doing the right thing trusting your instincts and getting medical advice and it sounds like the GP is taking you seriously. I think the chances are overwhelmingly high that it will be nothing or something simple that can be dealt with very quickly so try not to worry too much.

Thanks so much Booboos, we were meant to go to his friends' house and I was just getting the baby ready and he's fallen asleep. I'm going to do a bit of research to look for peadeatric consultants in London to keep me busy while I wait for the letter.

Get coeliac screen done

Let us know how you get on. It all sounds very stressful but keep remembering there are many simple explanations, don't panic about rare possibilities.

Thanks so much to both of you :) We have an appointment this evening to see a paediatrician and he should get bloods done there too. I will come back to update.

Sorry - should have said and not sure if it means anything, but he never ever touches bread, rolls, wraps, pasta or anything like it. He is often given it but won't touch it. He loves rice and potatoes. I mentioned this to my mum one day and was wondering if he is rejecting some gluten containing foods as he knows it doesn't agree with him. She pointed out that he would eat a cake though! Even with a cake he would only actually eat the top of it if it had some kind of icing etc, he would never touch the sponge. I think perhaps I am speculating too much and need to wait to get blood results!

I agree with booboo - coeliac screen should be done straight away (and don't change his diet beforehand, as the test won't work then).

Some similarities in your son and my DS who was finally diagnosed coeliac at the age of 4. He is a different child now - I often think how terrible it would have been if (after 18 months of seeing doctors) the last paediatrician hadn't added the coeliac screen to the list of tests. He would be in a terrible state.

Hope you get a resolution soon, OP.

Thanks so much Driven. My brother is currently also being tested for coeliac and with dad too it does run in the family. I'm so glad your son got a diagnosis. It must have been so worrying beforehand. My dad wasn't actually diagnosed until he was 50 and it was his dentist who picked up on the fact that the bone graft he was having for a tooth implant wasn't taking and that he should be tested for coeliac. I'm from an Irish background and I understand coeliac is quite prevalent in Irish people, particularly from the West of Ireland which is where dad is from. I've got type 1 diabetes which is another auto immune condition but I haven't got coeliac.

It sounds like your DS is pretty high risk for coeliac then, OP. Do you know which blood tests the paediatrician is getting done? Make sure the paed knows the family history, and check that the test includes coeliac screen and which one (there are different types of test).

It might be worth you looking at the Coeliac UK website. They have a lot of info about diagnosis. About 10% of coeliacs are deficient in the antibody (I think it's an antibody) that's used in one of the tests, so check out the info about that to make sure the right tests are being done. Also consider asking for an HLA-typing blood test (which looks for the "coeliac genes" HLA-DQ2 and HLA-DQ8).

Also, at your DS's age, the immune system is not fully developed and so a blood test can be negative but the child can still have coeliac disease. My second son began showing symptoms like his elder brother at about 2.5 - we were very quick off the mark getting him tested, but the blood test was negative. We went for a biopsy anyway, which was inconclusive. The consultant thinks he is coeliac, but we caught it so early that there wasn't enough damage for diagnosis. We have decided to treat him as coeliac, go strictly gluten-free (easy since we're doing it for DS1 anyway) and do a gluten-challenge and retest when he's older.

Finally - since your DS rejects a lot of gluten-containing food, there is a danger that he is not ingesting enough for the test to work. (Although from the way you describe him, it sounds as if he is getting enough to do the damage - if it is coeliac that is the issue.) You should discuss this with the paediatrician as well. In your shoes I would go for the test as soon as possible regardless - and then if it's negative, try and find ways to increase gluten in his diet (even if it is by sprinkling gluten powder into a something he will eat) and re-test in two months.

The good news is that if he is coeliac, the gluten-free diet is miraculous and he will begin improving immediately. Really important to get a diagnosis though - because (as you probably know from your dad) if you are coeliac it is essential that you do the diet properly, avoiding all cross-contamination and being very strict. It is very rare for people to live up to that standard if they haven't had the diagnosis.

The other good news is that I have found that diagnosis at a very young age like your DS's is great for the child's acceptance of the condition. It seems to be much harder for older children/teenagers/adults - I have met people with all sorts of emotional issues around the change in diet. My DC have none of these issues (so far at least) because it's just been normal to them from the start.

Sorry, very long post!

Thank you so much Driven, that's really helpful. I'm not sure what bloods will be done this evening and I wasn't sure which speciality consultant to find so we are seeing someone who covers general paed but specialises in allergies. My initial concern is that he is anaemic and then if he is, find out what the underlying cause of this is. I'm just hoping and praying that there isn't anything sinister behind his symptoms. Coeliac would seem a strong contender if he is anaemic. He is currently on AB's for tonsillitis so I hope that these don't sway the results. I'm presuming he will have a Full Blood Count screening but I'm not sure if Ab treatment will alter white blood count. I should know this as I've had a double organ transplant and so my WBC is often checked because of my immunosuppressants but I'm not totally clued up on the ins and outs of it.
I'm going to make a few notes from your post re particular blood screenings and I will definitely look at the Coeliac UK website.
It's funny you say about your DS2's symptoms - a friend of mine is coeliac and so is her DD1. She is convinced that DD2 is coeliac and it's been found that she has the gene but the test keeps coming back as negative. She is going back to the hospital on Monday as her DD is now losing weight and displaying other symptoms.
Yes, dad is very strict and if he has ever accidentally ingested gluten he can really feel it the next day. He said its like the feeling of having a very bad hangover with headaches, stomach pains and just feeling rotten. We get quite a lot of GF foods in for dad and it's amazing the amount of foods it's in. I bought chicken breasts from sainsburys sliced to have in a salad and they had a salt and pepper seasoning but they had gluten in! Dad also doesn't drink orange squash as he said that can contain gluten!
That's really positive and it seems like your DS is doing really well with it :) The difference in my friends' child who has been diagnosed and follows a GF diet now is immense. She has grown so much, filled out and has so much more colour in her cheeks. Thank you so much for your really helpful advice :)

Your dad's right about squash - it can contain barley and therefore gluten. You can tell from the ingredients though, so easy to check.

Your friend's second child sounds just like mine! My DS2's symptoms all went away once he was gluten-free. There is increasing research on 'non-coeliac gluten sensitivity' where people have coeliac symptoms to gluten but not the specific coeliac antibody response, so this is also a possibility.

As a by-the-by - both my DS's got tonsillitis constantly before they were diagnosed, and for the year following diagnosis. Now (two years post-diagnosis) they haven't had it for a year. I do wonder whether the effects of gluten-related damage to their immune system was making them more susceptible. They are hardly ever ill now.

That's interesting about the tonsilitis. I'm glad it's improved. I read something that coeliac will be in the genes but that there can often be a 'trigger'. DS1 had a viral thing about a month ago with rash, vomiting and high temperature. It was suspected scarlet fever. Since then I've noticed more of the behavioural change. When I developed type 1 diabetes when I was 12, I had just had an episode of strep throat.
That's interesting too about the non coeliac gluten sensitivity.
I'm not looking forward to the blood tests later! Have you got any tips?!

While your DS is getting a ceoliac blood test, request one for yourself!
You have a 1st degree relative with it, so should be tested (and you have type 1 as well which is also autoimmune so that's very relevant even if you have no overt symptoms).

Even if DS is rejecting many wheat foods, he will still be getting a lot of hidden gluten in almost everything he eats. I avoid even trace amounts and it is in almost EVERYTHING that's pre prepared. If he's eating enough to make him ill he's eating enough to test IMO.

Actually the blood tests have been no problem at all for my DC.

Our hospital gives them "magic cream" (local anaesthetic) an hour before the blood test. They get to play in the children's ward playroom while this is taking effect.

For the blood test, the DC sits sideways on my lap with one arm behind my back. One nurse shows him a book/toy, while the other withdraws the blood from the arm behind my back. Because of the magic cream, it doesn't hurt.

Then, on the way out, I let them choose either a comic or a small bag of Cadburys chocolate buttons (which are gluten-free) from the hospital shop.

They LOVE going for blood tests! I would check that your hospital does the magic cream - I am sure they do. Some sort of post-test treat that they know they're going to get is a big help, because you can keep mentioning it. Also - at our hospital the child gets to choose a 'well done' sticker to stick on their top after they've had a test - you could bring a sheet of stickers in case yours doesn't.

We saw the paed this evening and he is satisfied that there isn't anything serious going on. He is testing for coeliac but doesn't believe that DS has it as he is still growing along his height and weight charts.I'm still not convinced but will see what the tests show up and if he starts dropping weight I will be straight back. Typically DS was like a different child to how he's been for the past few weeks and was very lively and energetic! He did suggest that some of his behaviour change may be down to sibling rivalry. DS2 is 7 months. His nursery teacher also suggested this. We were away for the week last week and DH spent a lot of time with Ds2 and I think DS1 was a bit put out by it so perhaps that would explain some of the behaviour change. I do feel reassured that there isn't anything sinister going on but it will be interesting to see if the tests show anything up.

I've been tested for it before Rawcoconut and recently had an endoscopy where they biopsied for it again and it was negative thankfully.

Great tips for the blood test Driven. He had a magic spray as it works instantly. He didn't like it and howled a bit but I think that was more at the sight of the needle than the feeling. The nurse have him a certificate for bravery and a sticker :)

My DS1 was still growing and within the normal range on the height chart (although he wasn't where I thought he should be). I think it's quite outdated to think that a child needs to be actively losing weight to have coeliac, that only happens in a minority of cases. Unfortunately a LOT of doctors still seem to believe this (probably including the paediatrician who didn't bother testing DS1 for 18 months ...)

So I'm glad you're going ahead with the test. Hope you get the result you want - come back and post when you do. The certificate for bravery sounds fab!

xx

Thanks Driven, I will do and thanks for all of your help and advice :)

I read that it can take a week or so for the coeliac screening to come back, I was wondering why the paed said it would take so long to hear from him.

I'm so glad your DS got his diagnosis. 18 months is a long time to wait, especially when they are so young and you are concerned.

Thankfully there seems to be a lot of GF foods available now, I know M and S do a really good range. My mum really rates their pizza bases above others if you want something quick for dinner x

OP I notice you mention tonsillitis among other things and I had to post. My DS sounds remarkably similar to yours in many ways. Deathly pale, dark circles, skinny, incredibly lethargic, permanent swollen glands, night sweats, disturbed sleep and nightmares. I became convinced there was something terribly wrong.

We have a lovely GP who immediately recognised his huge tonsils were causing sleep apnea which explained every one of his symptoms.

A couple of months and one adenotonsillectomy later and he is a totally different child. I am letting you know this because our pediatric ENT told us that we had been lucky as many GPs don't pick this up as a possibility. Children with sleep apnea are often misdiagnosed with behavioural problems and even ADHD. Really they are just exhausted.

Anyway, sorry for the rambling post! This might be totally irrelevant to your DS and I wish you all the best in getting him well.

Wow thank you Mothering - that really rings true! It's funny as the paed looked at his tonsils and remarked that they were very big. Mine were always very big and I had tonsillitis and strep throat a lot as a child. I was meant to have them removed but at aged 12 I became diabetic so it was decided to leave them alone. For various reasons I had them removed a couple of years ago and have been much better since and no snoring!

DS does seem to have more colour in his cheeks today though and is more lively, although asleep on the sofa again!

It is definitely worth keeping in mind though, thanks so much for taking the time to post. I am glad that your DS is so much better :)

Hope it helps clucky. Does your DS snore or sweat at night?

I have been where you are, alternating between blind panic and looking at my healthy child and thinking I'm crazy. I also thought anaemia and leukaemia were possibilities and it was terrifying.

Hi Mothering, yes he does snore sometimes and often his entire top half is drenched in sweat.

I don't think that he necessarily has unsettled sleep though. He sometimes goes through a few weeks where he may wake up in the night shouting for me or DH but it's not all of the time. What were the other symptoms your DS had?

I had an email from the consultant yesterday to say that most of the bloods are back are are within normal range but the coeliac result isn't back yet.

My DS's main symptom was tiredness. He also was pale, had swollen glands in his neck, dark circles under his eyes and showed a general apathy to life. He preferred to sit on the sofa and watch tv rather than get out and do activities. This wasn't all the time though. Sometimes I'd see him bouncing around and think I was neurotic!

It was when his teacher (he's 5 btw) mentioned that he was in a daze most of the time that I took him for some investigations.

I didn't really notice his disturbed sleep either. Obstructive Sleep Apnea doesn't cause the child to come fully awake, but prevents them from ever reaching deep, restful sleep. My DS would snore, reach a crescendo, sputter, and go quiet. The sweating is caused by the child's body having to work excessively hard to maintain oxygen levels.

I'm glad your DS's bloods are normal. I was so relieved to lose that dark cloud of worry. Hope the coeliac result is the same.

I notice you were researching consultants in London . If you're private I could highly recommend Ben Hartley at The Portland if you do want to investigate further.

Hi all, I just wanted to update...I had a phone call from DS's consultant this evening and he said that the coeliac result has come back and DS's ttg level is abnormal. I don't really know what this means (had a crying DS2 on my lap at the time), but the consultant is going to email me tomorrow with all of the results. He said that he will need to see a Gastro dr and have a HLA test and perhaps an endoscopy. He said that he was very surprised at the result. I'm not really sure what all of this means and I'm a bit worried that DS is going to have a 'condition' at such a young age. This probably sounds really over dramatic but I just don't want him to end up like me. I think I just need to wait and see what the next steps are now. I will update again when I know more.

It sounds as if your DS may be coeliac, OP. When you get the email with the results, you could telephone Coeliac UK to help interpret them? My understanding is that a TTG reading of over 100 plus a positive HLA test (the one looking for a coeliac gene) is enough to diagnose a child without having to have an endoscopy. However, it's important not to change your DS's diet (i.e. don't cut out gluten) yet, in case an endoscopy is needed.

I would push the consultant to fast-track the gusto appointment, so that you can find out exactly what the situation is, and - if DS is coeliac - move on to the gluten-free diet as soon as possible.

If he is coeliac - don't panic. It is a lot to take in, but it makes the future very bright. My DS was diagnosed at 4, and it has been a wonderful thing for his health - I often think how awful it would be for him to have gone undiagnosed through his childhood. I also think it is a lot easier for children to accept when they've known about it from a very early age, rather than having to change their eating habits later in life.

Good luck, and please do update with further news - I will be thinking of you.

Thanks so much for your reply nomdemere, I got the results today and the TTG is 28 units which the consultant said is nearly ten times normal and the endomyseal antibodies are positive. I've left a message for the Gastro consultants secretary to call me with an appointment.
Thank you so much for the reassurances too that is so good to hear about your son. Do you mind me asking if he has any other autoimmune conditions? I've got type 1 diabetes and I ended up having a double organ transplant because of complications of it. I know that coeliac is associated with type 1 and I'm so worried that this may be a pre cursor to DS developing it x