Totally TOTALLY confused over coeliac/non-coeliac business. please help, and shed some light.

[misscutandstick]

DS5 who displays autistic symptoms, has a problem with gluten/wheat - i know he does. WHen he has it, he has raging stinky green diarrhea, gets panda eyes, and acts a little peculiar (looks out the side of his eyes, is withdrawn, will stare at wheels/turning things for an hour etc) He also has problems with dairy (chronic constipation/sickness), soya (same as gluten), eggs (violent sickness), and a few other things. We had the coeliac test done a few months ago, as well as a dairy one, both came back fine!?!

So his paed (originally referred because of faltering growth, which is still present @ 2.7 and weighing just 22lb, and then going back because of lack of mental developement) insists that he does not have food issues. Incidentally when we removed dairy, the dramatic change in personality was noticed within a week. When gluten was removed, he had terrible withdrawal for about 2weeks. Although he is still completely non-verbal he now understands a few makaton signs. And will respond to his name which he didnt before the restricted diet.

Now, for the last couple of years DS2 has had a 'stoned' look to him (for want of a better explanation) and has stopped all but basic thinking. As a small boy (aged 5)he would ask the most intriging questions, like how dinosaurs and men were never together, so where did men come from? and such. He is now 11 and gets the familiar panda eyes after pizza and pasta, we all complain about him not flushing the loo - which he does, but his floaty poo (TMI) 'just wont go', and it STINKS! (again TMI, sorry). So we organised blood tests for him, and put him on gluten free for a trial 3wks to see if there was a difference... OMG! ive got my son back!!! in the first week he was extremely sensitive, shouting and crying alternatly, then it calmed a little and 2wks later he was asking about the rotation of the moon in relation to the earth and wether we see the same side of it as australia! YAY!!! i have him back! We then did a challenge in the shape of a HUUUUGE dominoes pizza, which resulted in violent tummy ache, diarrhea, and thumping headaches all weekend he looked awful.

Then the test came back, again 'normal', shows no abnormality WRT gluten.

HOW CAN THAT BE??? HE VERY OBVIOUSLY HAS A PROBLEM WITH IT. WHY IS IT NOT SHOWING UP? DO EITHER OF MY CHILDREN HAVE COELIAC DISEASE OR NOT? IF NOT, THEN WHAT IS GOING ON? if anyone can shed any light, i would really really appreciate it. Thanks in advance. XXX

PS DS5's dieticians answer to his total lack of weight gain is to 'sprinkle sugar and pour butter on everything'... not sure his dentist would approve. And i certainly dont want that amount of sugar whizzing round his little brain. His Paed wont prescribe/offer anything as he said 'well he looks fine' he does not look 'fine' at all, hes in 12mth baby clothes and they hang off him, as hes only skin and bone.

Hiya, sounds like you've been having a very rough time of it.

Two thoughts: how long were they on gluten before the test? The other is that they simply may not be coeliac. My dh has never tested positive for it but definitely can't tolerate wheat. My ds (never even attempted to test him) used to have a real problem with both wheat and oats (which my dh can tolerate) but now seems okay with wheat, whereas oats makes his eczema flare up big time.

The annoying thing about not testing positive is that we have to pay for all the wheat-free products ourselves, whereas we'd get them on prescription if he had it. But other than that, it doesn't really make much difference; it sounds like they just need to exclude gluten for the time being.

Can you change dietician?

My son is the same.
the problem with ASD kids not being able to process gluten and dairy is to do with their inability to break these proteins down. It is not the same as coeliac diseases.

FWIW I was told that DS2 probably didn't have a problem but I removed it anyway. I don't give a shit if a bunch of professionals who do not know my son disagree. I am his mother.

I took him off gluten and casein at 3 and his speech came back , he re-potty trainned and his stomach issues disappeared. We have continued to keep him gluten and dairy free and he remains a much happier and more content boy ( and yes - less autistic than he was) aged 12. I would never give him gluten and dairy and on the odd occasion he has ingested it he becaomes a very unhappy young man.

Read Diet Intervention and Autism by Marilyn Le Breton for the reasons why your child can't tolerate G&C.

Contact the Autistic Research Unit at Sunderland University ( professor Paul Shattock) for the urine peptides test which will give you some evidence of your child gut problems to help you cope with the idiots professionals who refuse to believe your accounts of your sons problems.

Anything else I can help you with just shout.

Finally TRUST YOUR INSTINCTS AND STOP FEEDING HIM GLUTEN AND CASEIN

here

and here

My dd1 has definately got a very severe problem with gluten, before gluten was removed she was tiny, withdrawn, tired, so grumpy it is untrue, had the panda eyes, looked grey and was for want of a better word depressed (at 4 yo).
I finally asked for tests as this had gone on for so long,k we also had removed dairy and soa and various other things at different times all of which seemed to help. She tested negative to coeliacs, the doctor however was so amazed by the change in her in one week that e treats her as coeliacs and we tell teachers etc that she has coeliacs as it is easier and less likely to cause confusion.
DD2 has severe upset tummy and nappy rash for weeks if she has the tiniest amount of gluten, she has not been teted at all but I am treating her as coeliacs as it is fairly obvious to me. she has never had problems with her growth like dd1 as she has never really had gluten in her diet.
DD1 is now a healthy, happy thriving child (god I never thought I would say that). She has gone from a size 1.5-2 clothes in feb 08 to a size 4-5 now, she is by no means the smallest in her class at school, it was not that long agop that I didnt think she was going to be able to go to school as she was still having at least 3 hours sleep in the day.
The biggest change we found was with her eating, it was almost instant, she would eat nothing before, I would spend hours trying to coax a couple of spoonfuls of anything down hher, now we cant actually fill her up.
Anyway, sorry for the rambling, I am not sure what my point is except that things arent always as cut and dry as a test and I certainly have never looked back.
Good luck.

many thanks Pagwatch, it really gets to a point where the 'professionals' convince you you're wrong - then you let your guard down with diet and you end up with children who are thoroughly miserable.

Ahhhh, i see, (WRT protein problems)that would make sense - DS5 has ALWAYS had tummy troubles, so i assume thats why hes a little rake, and DS2 only seems to be having troubles in the last couple of years, so grew fine - but is now losing a little weight (tho TBH that could also be a consequence of his age/hormones/growing). So if its a possibility that DS5 cant process protiens, would enzymes help? And is it all manner of proteins (i naively assume that meat proteins are not the same as egg proteins etc) that he probably cant manage - judging by his reaction to foods, and his weight.

Sorry for all the questions, but the 'professionals' seem to be no use at all.

Tribpot - we live in a tiny village, which means we only have the one dietician. . incidentally the GP that i asked to prescribe a dairy/soya free formula (just to get better nutrients in him) didnt really have much clue about autism (shes in her 20's), and seemed quite disturbed about DS5 licking the chairs, table and carpet in her room

Monster of doom - OMG that is SOOOOOOOO DS5! i really can relate to all that you have said.

DS1, 3 & 4, all seem fine with it and dont seem have any problems at all. DH and I have some food intolerances: onions, mushrooms, peas, nuts. Maternal grandparents and her sibs all have gluten problems too. Professionals claims that its NOT hereditory .

When at toddler groups i have to explain that he cant eat the cheese and crackers or toast for snack and then they ask "why, what happens?" i always feel that they want something interesting to happen, and they are willing to risk it to see the results (surestart ). when i explain in short detail you can see the doubting look on their faces "oh, is that all?, whats she making all the fuss about?"

Sorry to whinge, its just nice to know im not on my own IYKWIM.

sorry forgot to mention: neither child had gluten removed before tests, but i had taken out the vast majority of dairy out of DS5's diet before the tests as he was so ill from dairy from being just a few weeks old.

Pagwatch: i thought that the sunderland test needed to be done before diet change?

I have the cookbook (its brill!), and have ordered the one you mention, thanks.

My son is currently undergoing assessment for asd and he has some behaviour problems, comes out with some really profound stuff like the OP's son (my son is 6), he also has huge dark circles under his eyes most of the time. I would like to try cutting out Gluten etc from his diet.

Can anyone give me advice as to where to start, how can I still give him a healthy diet?

Thanks in advance.

MumHadEnoughTinsel - I have numerous autistic traits and since toddlerhood have had issues with eating Wheat.
I would suggest starting with reducing wheat intake - personally I find I cope fine if I eat no bread and little pasta (I have one pasta meal a week). Phasing out wheat completely can be hard, as wheat is used in many products as part of flavouring. I also feel that phasing things out totally can be bad, as the body will never then learn to tolerate small amounts of it.
I find that reducing wheat is enough for me... I can have Oats, Potatoes, Rice, Eggs, Milk.
Breakfast: Typically Porridge made with Oats (not Readybreak, or other high processed oat) and Milk. For special treat I have a fry up - with sausages containing 90% meat (as then they contain very little wheat).
Keep a food diary, so you know what your DS has eaten. Also note down any adverse effects - eg. strange colour poo, diarrhoea, body rash etc. Each time you change something (such as removing, or minimising a food type) give it a couple of weeks, then change something else.

talk to Paul Shattock at sunderland.
He is well aware ofthe issues re our kids ingesting gluten and dairy and from memory DS2 had had G&C removed from his diet before we tested him.

TBH I was lucky enough to see such huge changes with diet that I never hesitated to ignore the professionals that wouldn't believe me. I even had a fuckwit NHS dietician threaten to report me to Social Services if I changed DS2's diet. So I just stopped engaging with them and worked it out on my own.
You can spend a huge amount of energy trying to convince people and ultimately life is too short.

You can investigate enzymes as an option but I would strongly recommend that you look at some of the yahoo groups and companies like Houston to get appropriate targeted enzymes.
this is interesting

Some kids seem to do well on enzymes - others not so good. Mine didn't cope at all.
But read up first

Thank you for your advice. I'm going to do some reading up on it as I definitely think there's something in it. x

I'm reading all this with interest, ds2 has a paed. appointment next week to look into his bowel problems - GP suggests coeliac due to awful, smelly, uncontrollable yellow diarrhoea. I'll post if by any chance I find out anything of interest!

Another very good book, which stresses good nutrition and links numerous symptoms with malabsorption issues.

None of the professionals we have come across took us seriously, so we also go it alone to a large extent.

Here is another family's story, which also talks about difference between gluten sensitivity & celiac, unfortunately gluten is not an allergy so it's unlikely to be picked up in an allergy test.

gluten family story

just remembered that I had this in my files(a very concise sytax of the book I mentioned earlier), it touches also why it's best to go easy on carbs

drs view

many thanks for those links, which i found extremely interesting - why dont more doctors listen to us mums?

There seem to be hundreds, if not easily thousands, that have the same problems with the same symptoms and still the GP's fob us off, treating us like idiots who know nothing... we may not know doctorates, but we KNOW our children!

You can get a negative blood test even if you are coeliac if you are IgA Deficient. This is explained about half way down the page here: coeliac.info/suppboard/viewtopic.php?t=796&highlight=iga

There is also dispute about how long you need to be back on gluten prior to the blood test - the recommendation used to be six weeks but I have seen recommendations that this should now be increased to three months.

My son was only diagnosed at 14 - I had been raising his digestive problems with our doctor for about 8 years and was constantly fobbed off as over anxious. When we finally saw the consultant (after he had a full allergic reaction to gluten and I had insisted on the coeliac blood test which was positive) the consultant asked why diagnosis had taken so long. I explained. He turned to the three junior doctors who were observing and said, "Always listen to the mother."