Low ferritin despite supplements and healthy diet? Any experience?

[lamado]

Just wondering if anyone else has experience of low ferritin in their DC despite supplements and a healthy diet.
Background - 6yo DS has coeliac disease, diagnosed as a toddler, follows a gf diet. He is a normal healthy boy - academically bright, bit grumpy at times, very well behaved at school.
He gets blood test yearly and ferritin levels are always on the low side, (and platelets always on the high side). This hasn't improved as his gut has healed, last blood test showed ferritin levels of 30. I think in the past they have just assumed his diet is poor and said to give him iron rich foods. Today we saw the dietician, I gave her a detailed account of what he has eaten in the past 2 weeks. He also has daily supplements which alone give the daily iron requirements for his age. Dietician felt his diet was good and easily gives him all the nutrients he needs. Also said he doesn't need any additional supplements above what I currently give him. She just said some people have low ferritin.
Just to add his folate, b12, hb and iron saturation levels are all good.
I'm not sure if I should be worried or not. He is due to have his bloods tested again in a few weeks by his gastro team, but as they are happy with his diet I'm not sure they'll do much unless his bloods get worse and I don't know if I should be pushing for more?
Any advice or experience would be greatly appreciated.

How good are his folate, vit D and b12 levels? Coeliacs suffer from malabsorption so often need extra supplements. Taking vit c with iron helps with absorption.

Thanks for your reply.
His folate is well above the minimum level, b12 towards the higher limit and vit D comfortably above a low level (he has had low vit D before and I give him daily supplements).
His body is absorbing these well, he's been GF for over 4 years now so everyone is confident his gut has fully healed.
He takes vit C with his iron, and I make sure he doesn't have dairy around this time.
In theory his ferritin levels should be higher, but they're not.

Perhaps he's only on a maintenance dose then? I guess it's hard to know what dose young kids should take, but i went from 1000mg of vit D to 3000mg to resolve low vit D. My level went from 40 to 88 at that dose in a few months.
Could his dose be increased safely? Or could that doctor do other tests to investigate why iron isn't being absorbed?

I give him a daily supplement which has iron in it, and that gives him the recommended daily amount for a child. On top of this he has a diet which contains iron-rich food (dietician felt he gets sufficient iron from the food he is eating), they felt he doesn't need any further supplements as the amount of iron he gets from his diet and current supplements exceeds what his body uses on a daily basis, therefore his body is not storing the 'excess'. The dietician said she feels he has reached his maximum storage level, and his maximum is just a low level.

How low is his ferritin and does he have symptoms of a deficiency such as feeling the cold, tiredness, poor concentration? If you are concerned, you could get a second opinion or get refetred to a paediatrician.

I would doubt the advice that his maximum storage is just a low level!

Thank inbetweener, the low level/ maximum storage doesn't feel quite right me either.
His current ferritin level is 30, normal range is 30-340. His platelets are 530, normal range is 140-400.
I've spoken to my GP a few times about his ferritin and platelet levels but she just says their are always children above and below the normal levels.
He's a healthy child, great concentration, enough energy, rarely off school. He does get cold hands and feet but he never complains.
He has a paediatric gastro consultant, but I'm getting a feeling their department is stretched, it's been hard work getting his yearly appointments (NICE guidelines state he should be seen at least once a year).
If I make enough of a fuss I get somewhere, I'm just trying to figure out in my own head if I should be making a fuss. On the one hand I have a boy who on the surface is happy and healthy. But on the other hand his blood tests are consistently not quite what we would want them to be.

Please do make a fuss. You are his advocate☺. He can't speak for himself. I think you should insist on seeing a hematologist?
I know from bad experience that doctors can overlook things they don't fully understand in children. Ranges are usually very wide so being out of range should be explained or investigated. A ferritin of 30 seems very low indeed.

Hi, i know this is an old thread but just wondering if you had a resolution to this?
You could be describing my son - 6yo, coeliac but -ve TTG, and always low ferritin which isn’t addressed. He’s been very lethargic recently so had blood tests which showed ferritin of 23. Have been given Sytron and been told to come back in 3 months if he’s still tired. He has a fab diet imo - always at least 5 a day, not too much processed food (being gf helps this!), and is v bright but tired. Came home crying after school a few times as he’s too tired to join in with football in the playground..
did you pursue this with his paediatrician?

Wow sleeplessi, my coeliac DS is 8. He's been diagnosed for 18 months and just got his TTG down to 10 but his ferritin is also 23 and he started a 4 month course of Sytron a fortnight ago. It was 25 six months ago and has now dropped to 23.

He also eats well and has been reviewed by the dietician so I'm at a loss. He's not a fussy eater and eats pretty much anything we put in front of him.

For now I'm hoping the Sytron and a big push on iron rich foods helps him turn a corner. He's not complaining too much but he looks pale and very tired a lot of the time.

I do worry about him.

Hi, I can't really say yet if we've addressed the issue as we went down a different path.
During his annual gastro appt last spring it was decided to test him for fructose malabsorption and that test came back positive (we'd known for a while that apples would make him very bloated and he had started to complain regularly of tummy pain).
The biggest change since we have been addressing fructose malabsorption (for him that is mainly limiting fruit, limiting sugar and avoiding sweeteners - these in particular are a real issue for him) is a big improvement in his mood.
He hasn't had his bloods tested since his new diagnosis, that will happen in a couple of months. One down side to his new diagnosis is I can't find any vitamins or iron he can have as anything like that in liquid form gives him tummy ache.
It will be interesting to see if there is any improvement.

Does the consultant think he has full villi recovery now?

If this hasn't happened, he will still be only absorbing a % of nutrients.

In terms of my DS’s coeliac, the consultant is happy that it’s under control. His TTG is negative and has been for over 2 years. She doesn’t seem concerned about the iron and he’s only on annual review now.

Since his last appt in July, he’s become increasingly tired and pale. The GP yesterday was very nice but didn’t inspire us with confidence- we asked for Sytron which she was happy to prescribe and then asked us what we wanted to do from there so we suggested to come back once the Sytron course is over. She said her colleague should have tested folates and re-tested TTG so said maybe we’d do this in the spring. All just seems so vague. He’s a brilliant eater - I’ve gone heavy this morning on beans, pistachios, eggs and dried apricots which he’s wolfed down. He’s eats much better than his 4yo sister who isn’t coeliac but is absolutely fine so I think it must be the coeliac rather than diet that’s causing the iron issue..
That’s interesting Lamado - do they think the fructose intolerance affects iron absorption? Interesting about his mood - my DS is lovely but gets v irritable when he’s tired..
Good luck Jammy George, it’s such a worry isn’t it and I worry about it affecting his schoolwork.

From what I've read fructose malabsorption does result in poorer absorption of iron, so it will be interesting to see what his levels are when he is tested next. There is also a link between fructose malabsorption and low serotonin, so it was definitely affecting his mood.
I've always described my DS as a Jekyll and Hyde type character. He is really good at school, but would literally have a meltdown as soon as we walked out of the gates - he just couldn't it together any longer.
I do think he is more anxious than other children (I work with children so have some experience) and I believe this is linked to his diet. It has improved a lot this year but
I think that my DS will always have a sensitive gut - when he gets stressed he complains of tummy ache.