Is there anybody with a gluten intolerant child who could help me please?(sorry, long)

[Sybella]

In Feb this year ds1 started a gluten free diet. This was after months of him being generally unwell and not sleeping and was a last resort as I didn't know where to turn.

He had never slept through the night and for the previous three or four months was awake every night for 4 hours (it was always about 4 hours). Sometimes he would cry or scream and be doubled over, finally as he started to talk he would shout hurting! hurting.

Other symptoms included very runny nose, dark circles under his eyes, very slow weight gain and his face looked drawn (iykwim). He had 3 or 4 tantrums a day (hed banging 0 the lot), seemed to ge aggressive and had 'difficulty' being with other children.

Anyway one day after 4 hours awake at night again (and bfing ds2) I took all gluten out of his diet. Amazingly that night he slept thru for the first time. After a few weeks runny nose stopped, dark circles cleared up and the tantrums stopped completely. After a few months he has a rosy glow and a chubby face and the kindest most sociable little boy with no signs af aggresive behaviour. Also his speech which had been slow to develop has come on amazingly well.

To get to the point (at last) through this the pediatrician and dietician have made me feel like an idiot. their answer to everything has been it's a virus. I have carried on the gluten free diet not without their approval but rather they say you can do it if you want. They say it can't be coeliac's because he is not wasted. I have left many appointments in tears not knwing if I am doing the right thing.

What has made it worse is that I took ds2 to the gp with a very bloated tummy and failure to gain weight (he seems very small with a huge tummy and very thin limbs). The gp phoned the paediatrician for advice (he was very concerned) who said that ds1 did not have a gluten intolerance or coeliac's disease so ds2 must have a virus. I feel awful, embarassed and am lost as to whether I am doing the right thing or not. My confidence over ds1's diet is shot to pieces and I think the paediatrician just thinks i am an over anxious idiot. Does anyone have any experience that could help me? sorry this is so long.

did you get your ds tested for coeliacs?

If not, to do so you would now need to put gluten back into his diet, so it is there to test for.

You have my sympathy. dd1 is gluten intolerant (she is ASD, and i got the sunderland test done on her - not that it is accepted by many professionals)

her dietician (and dd2's) thinks I am bonkers, but "allows" me to indulge my fantasy.

I have just had a letter written wrt to dd2's FTT, which states that I am insisting on keeping the girls on a low fat diet (they are dairy free too)

My niece was always poorly. Had several stays in hospital with drips of antibiotics that did nothing. She was not "wasted" but petite. She has now been diagnosed as coeliac. I think sometime doctors are reluctant to go for tests as it involves a biopsy of stomac lining(if I remember well what DS said) I tried to call DS to ask for more details to pass on to you. I will let you know what has been done in a bit.

You have received some bad advice. Coeliac disease can run in families, but even if DS1 doesn't have it DS2 could. Do you have any other relatives with CD? If so, your GP should offer a blood test to you (or your DP) and your children as a matter of course.

If I were in your situation I'd buy a biocard blood test - some chemists stock them or you can buy online. They are as accurate as the blood test your GP would offer and the result is instant - you have to wait a couple of weeks for results from GP. If the test is positive take it with you to the GP and ask for a referral to a specialist in CD, not just a general paediatrician. The test is unlikely to work on DS1 if he has been GF for a while, but if DS2 has been eating a normal diet the test should be reasonably accurate.

I should just say, this test is entirely different from the allergy type crappy test offered by health food shops etc.

HTH

There is a coeliac society which can be very helpful I think. A friend has a DH who is coeliac and has called them often for advice on BF/FF/weaning her DS so as not to make him more at risk. They have also been helpful to my recently diagnosed Aunt and FIL.

Trust your instincts, you are their mum and you know when something is wrong. Maybe the society can help you with some ammunition for GP/dietician etc.

No he wasn't tested because they felt that he wasn't gluten intolerant but have said that they will test him before he starts school next Sept. I am not looking forward to the sleepless nights or disgusting stools (this is way tmi but they smell very nutty when he has accidental gluten).

Do you think his symptoms are those of an intolerance? He also has leg pain which I am not sure is connected. He is dairy free also (along with dd and ds2).

Lol at indulging yor fantasy, that is how I feel too. As if I would want to inflict an awkward diet on him.

Thank you all so much for your replys it is very much appreciated as they are starting to make feel very foolish.

onthewarpath thank you so much that is very kind.

chopchopbusybusy - no family member diagnosed but DH aunt was having bowel problems and was advised to be wheat free. I really don't know the details. DH has had stomach problems for the last few years (D&V blood in stools etc) but the blood test from the GP came back as negative for coeliacs.

Do you think coeliacs uk would give me advice even if he hasn't been diagnosed?

Sorry, should say the paediatrician is making me feel foolish, not your replys.

I do think you should contact Coeliac UK. I think they will offer you good advice.

Many GPs (and general paediatricians by the sound of it) still believe that CD is a rare condition. It is estimated that 1 person in 100 has it with 1 in 250 diagnosed.

Many undiagnosed coeliacs are also lactose intolerant although this is often temporary and disappears as the gut heals.

Blood test can be negative and a biopsy gives a much clearer result. Maybe your DH should be pushing for more tests too.

I agree Abou DH chopchop but the gp seems to have discounted and won't take it any further.

I was wondering whether ds1's dairy intolerance was due to the gluten as he has a different reaction to dd (who has a severe, very fast reaction to dairy). thanks again for your advice. I will certainly consider buying the test for ds2, the sight of his swollen tummy always alarms me. For some reason I don't have the confidence to persue the gluten intolerance with ds2.

Thanks Kerrymum you are right of course, the symptoms did disappear and he has been gluten free for 8 months. My confidence has been shaken after the last visit to the gps.

Hi Sybella - I have CD as does my mum and even though it's in our family I am struggling to get DS tested.

he's now 18mths old and although his poo got more solid after weaning, it's got looser & looser since then and even the nursery have commented that it is not normal now.

he's also on a self-prescribed mainly lactose free diet as there is a recognised link between undiagnosed coeliac and lactose intolerance - this is because the enzyme which breaks lactose down is produced in the intestines, which if they have been damaged by gluten won't produce any.

DS's poo is much more solid on the LF diet and we've even had days were he's only been once.

DS doesn't have many of the classic symptoms, but i didn't either - just bloated tummy, very windy and although he has ut on weight he has slid down the %iles. he developed a bad cough last jan which he hasn't got rid of still, which has got worse again since it got colder & damper and this caused his sleep to go to pot as well - he also has reflux!!

Coeliac UK have lots of really useful info on their website. Although adults and bigger children are usually diagnosed with a blood test and biopsy, most docs don't bother with the biopsy on LOs.

Good Luck and keep perservering - I am even though sometimes it feels like we're getting nowhere.

Well just had Ds on the phone. Her DD had following symptoms :
-bloated tummy
-Permanent fatigue
-often agressive, even depressed at times.
-There are other syptoms like diohrea (she did not have it.
Not all the symptoms are always present, but from your OP it seems that it fits quite well.

They started with a blood test (she said not a big deal, just from top of finger). As test came positve with the presence of some antibodies that are a marker of coeliacs they did the bioppsy. She said bioppsy not a big deal either as it is done through the mouth with local anestetic, they take tissue from intestin.

She read somewhere that you can now do some genetic analysis but is not too au-fait with it.

Her advice : get the blood test done as it is a good indicator, (you have to say that you want her to be tested for coeliacs as it is not automaticly done.) She sais life of her dauhter has been transformed since being diagnosed properly.

I must add that she lives abroad and I do not know how it work in the UK for referal. If you are really convinced it is coeliac, insist insist insist. Become a pain in the back of your GP but you and the little one deserve to know what is wrong once and for all.

Sybella

My DS2 has huge intolerance to gluten and dairy which is not coeliacs disease but which is VERY VERY REAL none the less.

He has ASD as well and an inability to process gluten and casein properaly is very common amongst his peers. He also started to speak properaly after we took gluten out.And the sore tummy, dark circles and white complexion disappeared too. A much happier boy.
DO NOT suspend your own opinion to suit your Doctors and do not feel silly for doing something that has actively helped your child for many months.

Sit down. Take a deep breath. They do not know your child like you do and they can sometome be wrong.

Get your child tested for coeliacs but if you do not have any luck then go to www.autismmediacal.com. I know your child does not have ASD but there is great support for people using GFCF diet for their children and support and advice on how to get help- not angst- from your health professionals.

Good luck

Thank you all so much. I knew I wasn't making it all up but the "proffesionals" have made me feel that way.

onthewatpath - thank you, his symptoms do fit, I just wonder why the paediatrician does not think so. I would say that of all his symptoms it was the aggression that upset me the most because he was starting to get a reputation at my breastfeedingsupport group for being a bully - he was only 2! But like your dn the aggressiveness has gone.

Thanks pagwatch - I do know deep down I am doing the right thing despite what the say and will continue regardless (even though they make me feel like a freak).

Your advice has been fantastic and I have decided to do the home test on ds2. If that is positive then I will have the ammunition I need to push ds1's case. If negative then I am giong to insist he see someone because I know his tummy is bloated beyond what is normal. I will have him weighed again on thurs by hv and take it from there.

With regards to ds1 - he is not due to see the paediatrician again until next Aug but I am going to try to insist he seen as soon as poss (after christmas tho) to go onto a gluten diet and be tested. I don't know how we will cope with the symptoms but if they get too much or he gets distressed I will stop and revert back to gluten free.

I've been reading up about the home test in case our paed still refuses to do the blood test on DS and the one that coeliac uk "recommend" is not recommended for children under 5yrs - doesn't say why though

THanks Kazzal, will get ds2 weighed on Thurs and take it from there then. Good luck getting ds tested, can't beleive your having trouble even though you have it yourself.

the real test of whether you have a problem with food is what happens when you put it back into your diet. In can be coincidence if you get better off the food (because you've overcome the virus) but if you go back on the food and symptoms reappear then stop when you stop the food again you have a problem. Unfortunately to complicate the issue you can be fine for a short time after reintroducing a food - until your gut gets damaged again. The bigger the damage it is doing the faster symptoms reapper.

Personally I'd want to see a different paediatrician. Coeliac's are not all wasted, the paediatrician you saw sounds ignorant.

HI Sybella,

My husband is coeliac and our ds2 has diabetes T1 which is closely linked to coeliac.

Can't believe you're having trouble getting tested. I recently requested a blood test for ds2 as he had a few difficulties and they screened him without any complaint.

Good luck with your progress. Don't give up until you are happy with the answers you are receiving.

Sybella - didn't say it explicitly before but I think you're quite right to fight for your son as it sounds far more like coeliac than a virus. If you put him back on gluten and he gets ill again some doctors would accept that as proof without a biopsy. Don't think either the paediatrician or the dietician know what they are talking about.

Sometimes they will listen more to information form pressure groups - this webpage debunks the myth that coeliacs have to be underweight. www.coeliac.org.uk/coeliac_disease/default.asp

sybella - i am having exactly the same with my 9 mth ds. similar story, bf ,he refuses solids they make him ill , behaviour was similar, i went dairy free and gluten free and he improved drastically but is not gaining weight and neither am i. The docs and hv tell me to give him formula, and me to take anti depressants for PND! which i have got because of the stress and sleepless nights.

i took antibiotics when he was a newborn, which they told me were safe which i since found out ruins the intestines of babies. I think he has leaky gut. no one will take me seriously, and keep suggesting things which i know to be harmful to him.

I feel like social services will step in any minute.
Can we support each other?

I would see an alternative practitioner, it doesn't sound like your GP and Paed are helpful at all. If they haven't even done a test it's shocking and incompetent of them I would complain. I see a cranial osteopath for my dd's allergies it has made a big difference and the diagnosis has been spot on. Don't be bullied by these doctors, you are the expert on your child's health you see them everyday and know when there is something wrong.

Definitely request another doctor.

Bramblebooks - If ds2 has failed to gain weight again this month I will try to see a different gp at our surgery and request a test. He is not gluten free so hopefully gp will agree.

Tatt - I think I forgot to say that when he does have anything containing gluten unintentionally then the sleepless nights return (crying for around 4 hours) he is grumpy and has loose stools. I thought that would be proof enough for his paediatrician but apparently not. I feel that they just don't believe me.

Sorry to hear your having a bad time kalo12. Your poor ds (and you) sound as if you are really suffering. But as kerrymum said you know your own child. I completely understand when you say no-one will take you seriously, it's frustrating isn't it? I have lost count of the times I have left appointments crying and feeling like the biggest idiot. The sleepless nights were getting to me too but thankfully the did stop when he was gluten free.

Sybella,

My ds1 has coeliac and Type 1 diabetes. As bramblebooks (waves hello) says, the two conditions are closely linked. The coeliac was picked up by a blood screening at his annual diabetes review. Until then he had been symptom-free. He has always been the tallest in his class, and was certainly not wasting away! My father, who had been told for 10 years that he had IBS, was tested after ds1 was diagnosed and was also found to have coeliac. The change in him when he went gluten free was amazing. Ds2 and I have also been tested but are clear (though ds2 has some digestive problems and I think he is intolerant rather than a true coeliac).

You will need to re-introduce gluten into ds1's diet if you are going to have him tested. I think from memory it will need to be for at least 6 weeks. The main advantage of a diagnosis is that you can get the basics (bread, pasta, biscuits, pizza bases) on prescription rather than spending a fortune on free-from. But it sounds to me like you are doing the right thing by following your instinct. Don't let the doctors - who don't know your son as well as you do - undermine you.