gluten intolerance??

[harrietv]

I wonder if I could pick your expert brains? DS2, 4 years, has anemia (folate levels low) diagnosed at xmas when he was so weak and wobbly after series of illnesses and a diarrhea bug. Dr watching and waiting to see if he gets right although last set of bloods showed folate levels lower. Celiac blood test negative.
But I've noticed that his belly is often really swollen (and I don't know how long this has been for, and feel dreadful I haven't really noticed - but certainly since xmas he's been skin and bones with this big sticky out belly). I noticed in it photos first (he looks fat but isn't) and now 2 children at school call him the one with the fat belly.
As of yesterday been looking at his poos and they float.
Do you think this could be gluten problems? I will ask Dr but be good to go armed with some advice.
This morning I gave him ham and eggs for breakfast (rather than egg on toast) and his belly looks less distended. Although I can't really believe it could be that instant. Perhaps he didn't eat as much.
Any thoughts? Thank you!

Some coeliacs have negative blood tests (but positive biopsies). Your DS's symptoms sound EXACTLY like my DS1's (he was diagnosed coeliac age 4). Pale floaty poos (steatorrhea), bloated, hard belly that fluctuates in size, stick thin legs, anaemic, lethargic

Telephone Coeliac UK /look at their website for help about getting diagnosed. Don't accept any delay. Here are the NICE guidelines about coeliac testing.
publications.nice.org.uk/coeliac-disease-cg86/guidance

If it was me, I would ask for another antibody blood test (as the coeliac may not have been advanced enough for antibodies to show up in the previous test, esp given your DS's young age) Check with Coeliac UK about exactly what tests should be done (10% of coeliacs are IGA negative and the ordinary coeliac blood tests don't work, so make sure the full range are done). I would also ask for a HLA blood test (which looks for the coeliac DQ2 and DQ8 genes - having them doesn't mean you are coeliac, but not having them rules it out). if the second antibody blood test was negative but he has a DQ2 or DQ8 gene then, I would ask to be referred to a paediatric gastroenterologist for biopsy anyway (we did this with DS2).

DON'T go gluten-free or reduce gluten yet - it will invalidate the testing. I think your DS will almost certainly improve on a gluten-free diet - but then it will be horrible/impossible to go back on to gluten for testing. If your son is coeliac, it is important to have the proper diagnosis - as it is a lifelong condition, and you won't have the full range of support without the diagnosis. Also, people without the proper diagnosis often don't follow the diet as strictly, and risk long term health problems as a result. Push to get all the tests / referrals done asap though. And finally, if the biopsy is negative, then I would go gluten-free, as strictly as for a coeliac (we did this with DS2 who had all the same symptoms but negative biopsy).

Both my DSs have been strictly gluten free for over a year now. DS1, who was in a similar condition to your DS at diagnosis, is a transformed child. Totally different shape (flat tummy, athletic rather than skinny build). Full of energy. Great appetite. Normal poos. Happy and not irritable any more (or only within normal 5yo bounds!) It has been wonderful, though also a big journey. It took us 2 years to get him diagnosed, and I wish we'd been quicker, but so glad we are now on the right path.

Wishing you all the best. Feel free to PM me if you need to.

Hi, my husband is a coeliac and your boy does sound quite like dh describes himself in childhood. The blood test is not 100% - so as you are still getting these symptoms I would consider asking for a gut biopsy. www.nhs.uk/Conditions/Coeliac-disease/Pages/Diagnosis.aspx

Sounds exactly like my DD who was diagnosed Coeliac at aged 2.5. The other indicator for us that was key in getting the GP to agree to a test was that she had dropped from the 75th centile where she had been from birth, down to the 25th centile as basically she had stopped growing since she wasn't absorbing the nutrients from her food. At that young age we still had the centile charts to refer to but although your child is older you may not have the charts to refer to. The other issue we had with her was lethargy which after 2 weeks on a GF diet changed dramatically. She is now almost 14 and a competitive swimmer at National level and one of the fittest healthiest kids you could meet!

wow- thanks! You guys are amazing :)
This is really great advice and gives me good reading material. I have a feeling this must be in the back of GPs mind as he is charting his height and weight as of xmas - I've just put his details onto his red book from an unrelated hospital appointment this week (adenoids and tonsils to be taken out) and he's on 80th for height and 50th for weight. Unfort I haven't really kept track of his weight before xmas as it wasn't a big concern, although I know his weight has dropped in the past year.
At Christmas he was terrible, couldn't walk anywhere, had to carry him to playgroup, and was def skinnier than he is now. But he's still v lethargic, never wants to do anything or leave the house, although has fun when I push it and we do. But has just started having lying on the floor in Tesco tantrums which I've NEVER had from him in the past. I've put it primarily down to his tonsils and adenoids and lack of quality sleep at night.....so hard to unpick what is what.
Can intolerance/coeliac suddenly hit? He was quite a chubby toddler. I'm going to go back through some old holiday snaps and look at when his belly started bloating.
x

Lethargy and irritability are both 'official' coeliac symptoms.

Coeliac just triggers - it can happen at any point in your life. You need three things to be a coeliac:-

1. The DQ2 or DQ8 gene
2. Gluten present in the diet (someone who has never eaten gluten won't be coeliac)
3. An 'environmental trigger' which switches on the DQ2/8 gene so that it tells your immune system to start producing antibodies when it detects gluten in the body. The trigger is not as yet fully understood, but can be a range of things, like a virus (rotavirus in particular, apparently), a physical trauma (like a car accident), getting pregnant or giving birth (unlikely to be your DS's trigger...), a mental trauma and so on.

Those antibodies attack your internal organs. (This is why coeliac is an auto-immune disease, not an allergy - allergies work completely differently). The antibodies destroy the villi in the small intestine, preventing it from absorbing nutrients in the food - that's why the pale poo (paleness is unabsorbed fats), the anaemia (failure to absorb iron from food), the 'starving third world child look' (bloated belly from all the gas produced by not breaking down food properly, skinny limbs from loss of fat).

There are tiny babies diagnosed coeliac and there are 80 year olds too. It really does happen at any time. Not everyone loses weight/stops gaining. 50% of diagnosed coeliacs are overweight at the time of diagnosis apparently - one response to the malnutrition is for the body to want more food, so you overeat.

Your son does sound a classic case. I would really push for the referral and the biopsy as quickly as possible. If that proves negative, I personally would then try a gluten-free diet to see if it is a non-coeliac gluten intolerance - there is increasing research that this does exist. But very important to rule out coeliac first.

Sorry for essay! There is a brilliant book about coeliac disease by a medical journalist called something like Alex Gazzola - worth getting.

As the others have said, the symptoms you describe do sound like coeliac disease and false negatives on the blood test are quite common (whereas false positives are virtually unheard of). The NICE guidelines do state that if blood test negative but symptoms strongly suggest coeliac disease then the patient should be referred to a gastro specialist for further investigation. The 'gold standard' test for coeliac disease is a biopsy. One very important point: please do NOT remove gluten from your child's diet until you are sure it's NOT coeliac disease (ie after seeing gastro specialist) as the tests will not be accurate plus reintroducing after a period of gluten free can be very traumatic.

Just wanted to add that my DD was diagnosed at age 9 after suddenly developing symptoms (chronic tummy ache and anaemia) out of nowhere. Until that point she was quite literally the healthiest child I'd ever known and certainly not under weight or short for her age so yes, coeliac disease can develop suddenly (I think some researchers believe that it can lie dormant in some people and be triggered by something but not sure what).