Possible coeliacs, symptoms returned after gluten free diet had cured symptoms

[Julia2132009]

I think 14 month old DS has Coeliacs disease, but our doctor was very skeptical because he has gained weight normally (he usually said ?it?s a virus? on the many occasions when we visited him over the past few months). We were given an appointment in 7 weeks time with a pediatrician, but because the symptoms are quite bad (diarrhea, bad sleeping, loss of appetite, blister-like rash) I didn?t want to keep him on gluten until then in order to get a diagnosis from a blood test. So about 3 weeks ago I put him on a gluten free diet, and within days all his symptoms disappeared and he started sleeping through the night for the first time in his life. Now they have suddenly come back (all except the rash). I have heard that lactose intolerance can develop from coeliacs, so I wondered if this could be it? Sound familiar to anyone? I was thinking of putting him on a lactose free diet, but my HV told me not to give soya formula to him or make any dramatic changes until I had seen a dietitian (who I should be referred to by the pediatrician). I could get lactose free cow?s milk, but this would lack all the added minerals and vitamins in his usual toddler formula milk (which I think he relies on due to being a fussy eater). Any advice as to what to do in this situation before I am able to see a specialist? I?m worried he has been quite malnourished for months and it is harming his development, so I?m not keen on just waiting.

I agree with your health visitor, I don't think it's a good idea to make any big changes to his diet without seeing a paediatrician first. Cutting out gluten and then lactose are too big food groups and is hard to do without specialist advice.

Coeliac;s is a potentially serious disease and should be diagnosed by a specialist.

What makes you think it is Coeliac's?

Can you phone the hospital and ask for a quicker appointment, if someone cancels their appointment?

Hi, I have had similar symptoms in my DGD it is so hard to know what to do. My doctor gave the same advice no to change the diet. I kept a diary of what had been eaten and reactions. It was lactose intolerance and she has lactose free formula not soya you can get it on prescription but I have purchased it from the chemist without one.I do think it is trial and error. Even when she had an appointment at GOSH they did not have any magic answers and basically told me to do what I had done. Good Luck

I think I'd try it, personally - try it for a couple of weeks and see. I don't think a couple of weeks will do much harm and it sounds like the symptoms are severe, poor lamb. You can get vitamin drops for toddlers that you could supplement with, just for the next few weeks, if you're worried.

I don't know. Obviously you don't want to go against advice unneccessarily, but I think in your position I'd probably give it a short go, and do loads of research on other foodstuffs I could give to replace nutrients from the missing ones, just in the short term.

Also agree with the idea of ringing the hosp and seeing if you can go on a cancellation list of some sort... worth a try!

Coeliac's disease isn't diagnosed by an exclusion diet (because total exclusion of gluten is very very hard) it's diagnosed by blood tests.

if you exclude gluten and dairy now, when you get to GOSH they will ask you to re introduce it, so the gastroscopy needed to 'officially' diagnose coeliac can be performed. By then reintroduction may well be very unpleasant for your child. Also, a lot of GF food is also dairy free as well. It may be that your son is only lacto intolerant, and you are cutting out gluten for no reason. Due to starting GF too early, I took the step to keep dd on GF even without a gastroscopy, because she has classic symptoms and doctors agree she is almost definitely Coeliac, and all symptoms disappeared on GF.
Personally I would keep your son on a normal diet until doctors tell you to.

Thanks for all your comments. It?s hard to know what to do ? lots to think about! Casserole, thanks for the idea about vitamin drops for toddlers. Lynli, good to know there is lactose free formula if we were to need it. I will call every few days for cancellations. Belgo, I think it is coeliac because when I first introduced wheat at around 7 months, he had an upset tummy. Was advised to wait a few months and reintroduce slowly. I did this and at about 10 months he seemed ok at first, so I put it out of my mind. Then we had months of health problems that looking back, I can now see all fit with coeliacs (according to Coeliacs UK website list of symptoms). He had a varied diet and gluten every day so it was difficult to tell the cause but I did begin to notice he was worse after having large quantities of gluten the previous day. When I put him on GF the symptoms disappeared within days and he was a completely changed person. A few weeks ago when he was really poorly I thought having an official diagnosis was not so important to me if it meant continuing to give him the food that hurt him and subjecting him to blood tests and endoscopy. I thought if the diet made him better than that would be all that mattered. With the possible lactose complication I?m beginning to see maybe I was wrong, and I should have waited for expert help. I think I was unlucky to have a doctor that knew nothing about the latest research into coeliacs - he categorically denied it could be that because DS had been growing fine, but Coeliacs UK website says it is a myth that all sufferers are underweight, most are normal weight and have normal growth. That?s partly what made me take matters into my own hands!

Julia,

I have two boys both diagnosed with Coeliac Disease at 3 and 5. Both had the blister rash which seems quite rare.

My youngest was skinny, bloated stomach, pale lethargic, disturbed sleep, poor appetite, diarrhoea and wind but initially thought it was viruses from starting nursery.

My eldest didn't really have any symptoms apart from the rash.
We didn't cut anything out before the blood test and they both came back positive though the youngest had higher antibodies.

They suggest you have gluten for 6 wks before the test so that would fit in with your appointment date. I realise 7 weeks iis a long time in your position and I know it's absolutely horrible to give them gluten when you know it is making them ill. I used to loathe putting a bowl of pasta down in front of them but I would really recommend you keep gluten inyour sons diet and get a proper diagnosis.

If Coeliac Disease is diagnosed your child will then be under a paediatrician and you can obtain help from a dietician. They have regular weight and height checks with the paediatrician, attend Coeliac clinics and also you can order gluten free food on prescription.

Good luck

Thanks Booner, it would be a great help to be under all that specialist care.