Coeliac and mood swings in children

[praia]

Hello my son was diagnosed coeliac two months ago at 22 months. He displayed most of the symptoms for CD - was very bloated, not gaining weight, had low energy, greasy stools, vomiting, and generally very bad temper tantrums . We started seeing improvements in his bowel movements as soon as he started the GF diet. His energy levels and mood also improved very quickly and we were so happy with the initial results. We have also been supplementing him with iron and a multivitamin. Unfortunately he got sick last week with a strep throat and was prescribed antibiotics (Augmentin) for 7 days. His stools became mushy again and we noticed that his mood and energy levels are quite low once again. He is hypersensitive and gets upset very easily. He is still following a strict GF diet so I am not sure why this is happening. His strep throat is clear now but he is not his usual self. He seems quite withdrawn and irritable. Any idea why this is? I am taking him to the doctor tomorrow but was wondering if someone could shed some light on this? Feeling quite down as I don't know how we can help him get better:(

My youngest DS was diagnosed coeliac at 22 months so I remember the relief when he went GF. As he's only been GF for a few weeks his villi won't have healed yet. The bug will make him feel low and antibiotics are known to kill off healthy bacteria in the gut, which is probably why you are seeing what looks like a return to coeliac symptoms. I used to give my DS probiotics (I used optibac) when he was first diagnosed as they are supposed to be beneficial to the gut.
Both my DCs are coeliac and for both of them appeared back to 'normal' after 2-3 months go everyone else, but I felt it was 6-9 months before I felt their systems had recovered. My youngest DS has been GF for almost 2 years now and is perfectly healthy (as long as he steers clear of gluten!).

Oh thank you so much for your reply Charmingbaker. It is reassuring to hear. I will try to find optibac in Dubai where we live. I read a lot about refractory celiac disease and it worries me that for some people a gf diet alone does not stop the symptoms. I so hope that it is a question of months, that our life will go back to normal and my son will be his happy self again. Did your children stop lactose as well initially?

We haven't gone dairy/lactose free though I'm pretty sure it bloats my youngest. When I spoke to his dietician she said that it's hard being GF and DF so the benefits have to outweigh the difficulties, and he isn't in pain or uncomfortable do we kept dairy in his diet, though don't let him have excessive amounts. He still has some problems with his bloods (including low iron, but no coeliac antibodies so we know no gluten is getting in) so his consultant did the hydrogen breath test to check for lactose intolerance and the results were clear.
But even though his bloods aren't 'perfect' he is absolutely fine in himself.
Just to add his antibodies were raised until I removed codex wheat (labelled as GF, it contains what is considered safe levels of gluten and is in many GF products, especially prescription ones), I have also kept him off oats, even GF ones, as our dietician is doing research into how well coeliac can tolerate oats and is seeing villi damage in patients who report they have no outward effects when consuming oats.

My DS1 was diagnoses coeliac age 4 - similar symptoms to your son and with hindsight he'd had it at least 2 years.

Irritability is a known coeliac symptom. My DS age 3-4 was quite highly strung, easily upset / flew off the handle. Two years of gluten-free and he still has those tendencies, but considerably reduced.

Interestingly, he also had a strep throat problem after diagnosis - ours went on recurring every few weeks for over a year. Each time he would be absolutely wiped out and exhausted by it, and very irritable. Eventually a doctor worked out that it was being passed back and forth between him and his brother, and gave them a simultaneous long course of antibiotics which cured the problem. Now on the rare occasion either of them gets ill, they're not irritable with it and not exhausted either.

You should be getting regular (6 monthly or annual) blood tests for your son to check the gluten antibodies. In refractory coeliac disease, these will still be high despite a gf diet. If the antibodies are reducing (and they should reduce to zero within a couple of years) then you don't need to worry about that.

I don't know how bad your DS was at diagnosis. Mine was level 3c on the Marsh scale, so very badly affected. The gastroenterologist said it would take 2 years for his body to recover. His last blood test (at the 2 year point) showed a slight positive for antibodies - hopefully at the next one that will be down to zero.

It can take a long time for full recovery from the villi damage, and I think that until then, any illness can really wipe them out because they're still not absorbing the full amount of vitamins etc. to help deal with the illness.

I don't think your DS will have refractory disease if you saw improvements straight away - it is more likely that being ill is sapping his energy.

Hopefully in 2 years you will have the same feeling as me - every time I look at my strong, flat-stomached, bounding with energy, full of enthusiasm DS, I feel so grateful that we got the diagnosis when we did, and transformed his childhood.

May I ask how you knew it was coeliac and not a delayed allergy problem?

Not sure what a delayed allergy problem is, Shine. I didn't have the faintest idea what the problem was. We were referred to a paediatrician who didn't have the faintest idea either. Eventually another paediatrician ordered a coeliac test, and bingo! Problem found.

Are you the OP on the thread about wheat-free oats? If you suspect that you might have coeliac disease, then it's important to have a test. But you do need to be eating gluten to have the test, unfortunately.