Coeliac test negative, but cutting out wheat/gluten has reduced symptoms!

[pawsnclaws]

I'd really appreciate any advice on ds2 (6)'s situation.

For the past three years he's suffered pain on eating, a horrendously swollen stomach, and constant diarrhoea. He tends to need the toilet urgently after eating, and when he goes it's pretty foul - loads of explosive wind and splattering of the toilet.

Three years ago he was tested for coeliac disease - came back negative. The consultant we saw diagnosed toddler diarrhoea and told us to reduce his fibre and prescribed immodium. This made no difference. I asked about allergies eg a wheat allergy and the consultant pretty much laughed in my face.

We saw the same consultant a year later, and he diagnosed constipation with overflow, and told us to increase his fibre and prescribed movicol! He also did a second coeliac disease blood test - again negative. Movicol made no difference - ds was still going to the toilet at least three times a day, and still suffering with stomach pain after eating.

In sheer desperation, a month ago I cut all wheat/gluten from his diet. Not only was it easy, but within three days he was producing a normal, solid poo once a day. No pain on eating.

So where do we go from here? My feeling is that he has some form of allergy, as the difference is so quick. The other thing we've noticed is that his constant runny nose has stopped.

On the one hand I'm delighted that three years of soiled pants and pain has ended. BUT we've cut a major element from his diet. Do we just carry on, or do we need to see his GP about this?

Sorry for the length of post BTW!

Your son may just be allergic to wheat, which is different than having coeliac disease. Did they test him for wheat allergies? There are various degrees of wheat allergy, so you should get a referral from GP to a pediatric allergy consultant to find out what is really going on.

No, the consultant's actual words when I asked about wheat allergy were (with a sardonic laugh) "if I had a pound for every parent that thinks their child has an allergy ...."

I didn't realise there was such a person as an allergy consultant, I was thinking that all roads led back to the same (unhelpful) consultant - thank you for that.

Nothing like that Pixie, the digestive symptoms are pretty immediate but nothing else. He looks better in himself though now - not nearly as irritable!

How did they test for coeliac - was it just blood or biospy. Took 4 years to get DS diagonised, doctors kept fobbing me off - only when I throew my toys out and got referred to a Paed Gastro doctor did they start taking me seriously.

Blood test and stool sample (twice though). Funny enough, a friend of mine just had a positive blood test on her son and a negative biopsy - why does it have to be so complicated?!

The best possible news TBH is that someone medical says "yes fine just carry on cutting out wheat and gluten if it alleviates the problem" - but I'm worried that (having been told not to do this before) I'm going to cause another problem.

Keep trying for a diagnosis. I had my DD tested and it was negative, but the GP said as she was young, it was worth not ruling it out, and possibly getting tested again when she's older (DH has it so she has a 1 in 10 chance anyway) if symptoms continue.

The nature of coeliac means it's a buildup of antibodies and the gut lining ickiness (to use the technical term) which I think may be a factor in late diagnoses in many sufferers.

And anyway it's perfectly possible for people to have wheat/gluten problems without having 'proper' coeliac.

What an awful thing to say to a parent. You can be allergic to wheat without being coeliac. Coeliac is not an allergy, but has same dietary restrictions (ie no wheat). Do some googling about wheat allergies and specialist in your area.
As an aside: I was having similar problems to what you describe about your son and thought that I had food allergies. I was referred to an allergy specialist/consultant in London who agreed it was probably food allergies (after a few non-conclusive scratch tests), gave me an epi-pen and sent me on my way. Problem kept happening with no apparent cause so I finally saw a allergy specialist in the usa who did challenge tests (they give you the stuff to eat) and discovered that I was in fact not having an allergic reaction (and also NOT allergic to clams and oysters, as I had been told by an allergy specialist years ago) and in fact was probably having episodes of irritable bowel which were brought on by fluctuating hormones. I have now got it all completely under control (on the pill) and get to eat whatever I want!

Thank you. Just hard to know what to do for the best when he is so obviously better. HaveAHappyNewJung how old is your DD? Is she suffering symptoms?

SofiaAmes well done on getting it sorted. I think there are lots of myths about IBS/allergies. The same consultant told me that people with coeliac disease barely have the energy to move and are pale and hollow-eyed - tell that to my friend's sister who was diagnosed in her 30s and the same year had just run a marathon in three and a half hours!

Thanks Pixie will read that.

Blood isn't always reliable - and the stool test will not show anything for this.

Biopsy is the "gold" standard and they can look for anything else whislt there. The Docs did not want to do the biopsy but I was soooo pissed off at being passed from pillar to post, my DS having 5-6 horrific poo accidents a day, school giving me grief - etc etc. He has and always has done eaten about 10 portions of fruit and veg a day and adores medium rare steak so always "looked" healthy, DH's side of the family are tall, so he was average height but when he was a baby he was 98th centil height/weight. Only started dropping back when he started eating gluten.

We got diag. last Oct - since then we have grown and are now back to the 85th centil and growing fast.... Gone up 2 shoe sizes and has a little pot belly !

I had started taking food out of his diet trying to track it down, I had tracked some of it to Tomatoes (or so I thought but the toms always came with gluten (pizza / pasta)

Did you friends DS eat lots of gluten before the test - easier said than done if they now it makes them ill.

Now I look back I see my son gravitated towards gluten free foods, subconsiosly (sp) he must have realised it hurt. I was so upset a few weeks after diag. when he told me how pleased he was as his tummy didn't hurt anymore - He had never told me it did as he obv thought that was normal ....

If you have any more questions just PM me

It seems to me that if he is better, then stick with it for now. And in the meantime, try to get a referral to an expert who can do proper testing so that if wheat is not in fact his problem, you will know that.
There is a general culture in the UK that food allergies are a load of nonsense, which is neither helpful to the people who have them and aren't getting treated, or to the people who don't have them who have something else but aren't getting diagnosed, or to the people who are just worriers and have nothing wrong at all. The latter category being the one that I have found everyone gets blindly dumped in.

notapizzaeater tell me about the school situation - luckily they have been really sympathetic, but at the age of 6 people are going to start noticing him changing his pants at school .

The friend's DS was told to eat a normal diet before the tests, apparently the consultant was astonished at the negative biopsy (the blood test was very positive) and has said it will need to be redone as they must have taken the sample from the wrong part of the gut?

School started out being sympathetic - he had changes of clothes at school for him to sort himself out (school refused to help clean him) - If it was really (and it was most days) I got a phone call to collect him, take him home shower him down and take him back. School seemed to think he was doing it on purpose

At first though they insisted he was off for 2 days each time as it was unexplained diahorrea - attendance was horrific that year. When they finally realised it was "ill" diahorrea he was allowed to stay after being cleaned. Some days he could get through 5-6 changes of clothes - he had no control at all of his bowel, he could be talking to you and it would start running down his leg ! We bought him cheap, tight boxer shorts (to try and hold it in IYSWIM)

Luckily He has only just become aware of the social side of it and only in the last couple of months has it become an issue for him.

The consultant did not think he was coeliac - if fact was amazed at the biopsy .....

notapizzaeater thank goodness you got a diagnosis - I mean it's not one I would want, but he must be such a happier boy now!

I've been reading this with interest. My DS is sensitive to wheat - negative result on a blood test for an allergy (although the consultant paed said this was in no way conclusive). We were told that for relatively young children the best test was our own eyes! So from that, I've happily cut out wheat, and used gluten-free alternatives, so I'm pretty happy his nutritional needs are being met.

On the allergy/intolerance distinction, for my DS, the obvious sympton was dry skin patches - immediately upon introducing wheat when weaning him at 6 months, especially on the face. He had no obvious abdominal symptoms. But when we cut out wheat and gluten (esp pasta) his dry skin improved and, in particular, his appetite really increased. Which we obviously weren't aware he was 'under-eating' before. And he seems to be more sensitive when he's under the weather with a cough or cold.

So to me he seems to have an intolerance, and we happily buy GF bread and pasta. He's 6 now, too. And he'll have GF food until we do a wheat trial again in due course, to see if he's grown out of the intolerance (which we were advised he may do).

There is a link to dry skin patches and coeliac - DS has a red inflamed patch of skin on his right knee about 2" across - GP thought exema but DS not bothered about it so we left it. When he has traces of gluten it glows red and is itchy !

Link www.coeliac.org.uk/healthcare-professionals/associated-conditions-and-complications/dermatitis-herpetiformis

Hope that worked - not good at these link thingys !

Thank you. I had read a bit about that, but had thought it was so rare to be unlikely. But we're continuing a GF diet and we'll be asking for further tests, including for the DH coeliac disease, in a year or two if there's no improvement.

There are so many allergies and intolerances - even those causing serious symptoms like the OP describes - that children then seem to 'grow out' of, it's really hard to get a proper diagnosis as doctors aren't interested. So we've, as suggested, 'used our eyes' and just cut out most wheat from his diet.

We allows the odd biscuit, sausage, gravy etc, as we'd also read that cutting a food out completely reduces the chance of building up a tolerance to it! But there is always the coeliac worry in my mind. But DS is otherwise healthy, so I hope we are doing the right thing.

My DD is 3, and had just turned 2 when tested. The very nice GP said as she was so young she may not have built up enough of the aforementioned ickiness on the intestines.

She's not really having symptoms now, though she's always had a bit of a weird tummy. GP suggested having another test at around age 5 if this continues.

Paws, you can either try and convince dr that diet trial helped and if you don' want to reserach it yourself, get referred to dietician
or you could try and make him more ill by feeding him gluten as the gut damage can be patchy and you have to be quite ill for it to prove the so-called gold standard, well, it can take years for damage to build up all along 6m of the gut (if you can face it).
I did what you did, stopped gluten despite blood being negative and opted for diet trial rather than more gluten damage. My ds is gluten intolerant / sensitive, ie not celiac and in his case gut problems were less obvious then neurological. Celiac is just the top of the gluten iceberg and as some of the gluten damage can be permament, I couldn't face going down the "gold" standard route (thank God).
Was also told that in under 16 celiac blood test can be unrelaible (ie false negative).

Don't worry about dropping gluten, as long as you don't intend to replace it with the same volume of substitutes. In fact gf diet is very healthy but you need to limit the substitute carbs and stick to good unprocessed foods as much as you can.
Here, all the effort has been worth it as the improvement has been staggeringly amazing (5+ years gf now).

Hi all we have been through the mill on this one too with DS2 (now 5).
About two years ago he started to get abdominal problems pooing five or six times a day explosively. GP did battery of tests all neg. Referred us to paediatrician as his weight was dropping off. Pead dismissed him with toddler IBS. Begged for and got dietician appointment.
Over this summer I took him off gluten and he got immediately better. Different dietician then said we should have a biopsy. GP disagreed. But i put him back on gluten infull whilst trying to sort it out. His symptoms returned.
Paid for a referral to paediatric gastroenteroligist who works at Addenbrooks. He repeated ceoliac blood test ( over eight weeks after going back on gluten) which was again neg (and all his other blood results (bone density, iron etc )where normal too). He said that advances in this blood test mean it is very unlikely he would have ceoliac disease. Esp as we have no family history of it. He said he would biopsy if any element of any blood test was in any way abnormal which they weren't. He has diagnosed a severe gluten intolerance. DS is now back on GF diet and although not 100% better is getting there...and his tummy doesn't hurt anymore. So he says.
It's fine cutting out gluten. I am under dietician but they don't add much really. I guess as long as you replace the calories and nutrients it's fine....I have been analy comparing nutrient and calorie levels of GF bread with normal etc and interestingly GF bread has more protein and calories!!!!

Nigthcat can you explain what you mean by "limiting substitute carbs" and not replacing gluten without the same volume of substitutes?