Daughters iron level 5 and only rose to 9 with supplements

[lucylocks]

Hi

My daughter was treated by Dr. S last year.

She always knew she had low iron and her G.P. gave her supplements.

When she Saw Dr. S he doubled the supplement.

She has just found out her iron level was 5 before supplementing and still only rose to 9 after taking the iron.

She does not know her ferritin level. She also has a low calcium level.

She was diagnosed with ceoliac disease 5 years ago and sticks to a strict gluten free diet but she has not been well since then.

Can anyone throw any light on this please.

Many thanks browny

[Jessiepup]

Hi, I can't eat Gluten and my ferritin level was very low for years. My Gastroenterologist thinks it was caused in my Gluten eating years.

I have had an iron infusion because the tablets didnt work , so you could ask for one? I think a consultant needs to prescribe it though. It would be a start to address the fatigue.

[lucylocks in reply to Jessiepup]

Hi, Many thanks for your reply.

I think you are right, I think she could do with an iron infusion. Do you see your Gastroenterologist regularly as my daughter has not seen hers since she was diagnosed.

She saw a dietician who gave her info. sheets on gluten free food.

She did ask her G.P. if she needed to take any additional supplements (this was before she found out she had iron deficiency) and he said No you should get all you need from your gluten free diet.

I thought this strange as there are lots of iron and B vitamins in wheat which she obviously cannot eat.

[Jessiepup in reply to lucylocks]

I was refered to gastro after bone scan showing osteoporosis (also caused by gluten Intolerance) to make sure my gut is working properly and to make sure I was no longer malabsorbing.

she would have been malabsorbing nutrients before being diagnosed Coeliac due to damage to bowel.

She will be getting everything she needs on Gluten Free but some nutrients - especially iron may have been so depleted they struggle to get back up to correct levels on their own.

[lucylocks in reply to Jessiepup]

Thank you, I understand now how the iron could be depleted. Do you mind me asking what your iron level was before the infusion.

[Jessiepup in reply to lucylocks]

My iron was 11, also lots of people don't absorb iron well from supplements which is why other tests look ok.

[lucylocks in reply to Jessiepup]

Many thanks

[Hidden in reply to lucylocks]

do you get iron from wheat(carb) or protein?

[lucylocks in reply to Hidden]

Hi

I think iron is in both but I thought if you stopped eating wheat you may

not be getting as much as your body would need.

[Hidden in reply to lucylocks]

Sadly Wheat isn't what it used to be, fiddled with, I avoid it now too, just the occasional sandwich if hunger overtakes - it's a bit of a minefield really.

Back to original question, iron, - you can't beat Liver and onions, (

Pâté?) simple with allsorts of goodness - yet if not brought up on it, pretty tricky to acquire a taste later in life.

E.g. I never could .. never...ever.. drink milk yuk (I saw it raw as farmer's daughter) but a little research..... and a little perseverance - I now drink a little milk (but I will readily throw Yoghurt where it deserves to be!) J x

[Jackie]

Hi This is really Endo`s field.

Make sure she has the test also done for % for absorption. This is not automatically done NHS. It should be very high. If she has an absorption problem,, somehing like autoimmune, pancreas, Caeliac problems etc, it will effect her absorption of the iron. In that case she will need a very high doe, ferrous fumerate is the strongest. However. GP`s generally do no understand this. Also, as I expect you know, iron must always be taken with a vit C tablet, low dose only.

Jackie

[lucylocks in reply to Jackie]

Hi, Many thanks again Jackie.

[poing]

You can't diagnose iron deficiency on the basis of serum iron alone. You need to also know the ferritin and transferrin. Your daughter might also have a disorder where she's got enough iron but it's not available for her body to use. Serum iron can be low for all sorts of reasons, but the main one is inflammation, which could be from the coeliac disease.

Standard iron supplements inteferes with other important nutrients for absorbtion, so you need to be sure that there's an actual deficiency before supplementing, otherwise you risk creating new deficiencies, and those can have serious consequences too. Copper, zinc and calcium compete with iron for absorption, and deficiencies in these are really hard to diagnose because there aren't the same simple tests.

Is your daughter's gluten free diet as strict as you would like it to be, free from cross contamination and hidden sources of gluten as well as treats provided by people that don't know enough about it? Gluten gets everywhere, even into things like shampoo. I am gluten free and I know how hard it is to eliminate all sources. There is also a form of coeliac disease that's not put into remission with a gluten free diet, so hopefully she's been checked to make sure her diet is working.

[lucylocks in reply to poing]

Many thanks for your reply, do you happen to know the name of the coeliac disease that does not go into remission so I can google it.

thankyou

[poing in reply to lucylocks]

Yes, it is called refractory coeliac disease. I think it's very rare, but they would check for it when someone does not get better on the gluten free diet, and they are sure that no gluten is sneaking in. I think they run the coeliac diagnostic tests again, first by checking for auto-antibodies, which should disappear after time on a gluten free diet, for anti-gliadin antibodies (which should disappear when there's no gluten in the diet), and might also do another biopsy to make sure that the villous atrophy has healed.

[lucylocks in reply to poing]

Many thanks for that, my daughter bloods never showed she had coeliac disease, it was from having the endoscopy that they saw the villous atrophy to confirm diagnoses. She did have another biopsy a few months after she was diagnosed which showed some healing.

Thank you again for your help and advice.