Coeliac Disease in children

Has anyone got children who have coeliac disease who despite following a strict gluten-free and oat-free diet still are experiencing fatigue, headaches and aching pains even 2 and a half years after diagnosis. She is 10 and has been tested for vitamin B and D and K deficiencies, thyroid, iron, calcium etc as well as other auto-immune diseases like rheumatoid arthritis and lupus. She has also had MRI scan. We can't figure out what is still wrong with her. Do some children's bodies just take a long time to heal? (we have tried going dairy free in the first year and it didn't make a difference - if anything this last 12 months her pain seems to be getting more severe and some days she just can't manage school).

13 Replies

  • Have you actual copy of blood test with b12etc on it. Many drs tell you things are ok despite being borderline, b12 is a notorious one.

  • Thanks I will ask for the results but how will I know what to look for?

  • Try to get a physical copy of results which have a reference range on them. That way you will know whereabouts level wise where everything is.

    You can do a picture post of it on here or the PA forum. People there will no doubt be able to give advice even though none are medically trained.

  • I suffer terrible with wind. (Trapped). I have just started on lepicol. It is soluble fibre gluten free of course and must admit it has helped a lot. I suffer with constipation so it has helped with this too. Please have a look at lepicol information. It is very very interesting x

  • My son isn't coeliac but gluten intolerant. He had similar symptoms and developed an autoimmune disorder during that time even though he was gluten free. His symptoms have been transformed by a low FODMAP diet. I would recommend anyone who has unresolved symptoms by just going gluten free to try it for a short time as it's made such a huge difference for us. Good luck

  • when you get the B12 blood results ask for advice from the pernicious anemia group on face book! they are wonderful and will really help direct you to better health care for your daughter.

  • My daughter was perfectly healthy then suddenly (literally overnight) became very ill and it took a year to find out she was coeliac, she's severe. She didn't improve so they did more tests and another year later she has a diagnosis or fibromyalgia and chronic fatigue syndrome too. She has regained her weight but she will never be the same. We try to follow a whole food plant based diet which helps massively. Keep pushing for answers, you must both be sick to death of being fobbed off, so frustrating when you know there's something wrong but feel that doctors aren't really interested if it's not obvious :-( wish you both lots of luck xx

  • That is my worst fear; whilst looking on the Internet those are the 2 names that best fit her symptoms and unfortunately both my aunt and cousin had chronic fatigue. I'm really hoping that she doesn't have it, but I do just want an answer so that we can start dealing with it better.

    I feel for you both - it is heart-breaking watching them and not being able to do much. She just came back from a school trip 2 nights away and had to go to bed early - she could barely get undressed and get into bed, she had the electric blanket on, some Calpol and a cold-pack for her headache. She was like a little old lady.

    Worst part was that the girls in her room wouldn't listen to her when she wanted to go to bed and laughed at her when she cried because she was panicking that without sleep she wouldn't be able to enjoy the trip. I had even had a chat with the teachers about all her problems and making sure she was OK at night. She shouldn't have to be worrying about sleep at 10 - she should be having midnight feasts and just being young.

    I'm sure you and your daughter would have similar stories. Do you have any tips on staying positive as much for me as her?

  • What exactly do you feed her?

  • Nothing with any gluten or oats (even if GF oats), nothing with barley malt extract even if it is in the Coeliac UK book, nothing on prescription with Codex Wheat Starch even though that's supposedly GF and nothing that has been made in a factory which may contain gluten etc. Also our kitchen is gluten free.

  • Perhaps it would be helpful to get in touch with Coeliac UK for some advice?

  • Tried that back in January, but they gave good advice as to cutting out codex-wheat starch and barley malt extract and maltodextrin if you are really sensitive. Thanks

  • We have a diagnosis now - unfornately she is also suffering from something unrelated called hypermobility syndrome which can lead to chronic pain and fatigue. At least now we are in the right place and being treated by the pain management team.

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