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Child coeliac disease ( 2 years into being gluten free and she is still sick)

Posted , 4 users are following.

antpring
antpring

My daughter was diagnosed with coeliac disease end April 2014 and since then we have taken her completely off gluten.  She is now hyper-sensitive to even trace amounts of gluten and can be sick for days if she eats the tiniest of crumbs.  Her tests for gut damage were 300+ and she is down to around 18, but doctors would like her levels to be 7 or below.  We have been seeing a chiropractor and pysiotherapist to help with her muscle spasms and aching over the last few years (back and legs).  She has been tested for lupus, rheumatoid arthritus, anaemia, vitamin D deficiency, thryroid problems, calcium deficiency and she came off lactose for a month.  Everything has come back negative - although in January this year the consultant put her on calcium supplements to be on the safe side.

However, she is in constant pain which gets worse by the evening (she rates most evenings as 7/10, 8/10 if she has a headache and saves 10/10 for how she remembers it feels when glutened) - her joints and muscles ache (no swelling).  She has to have her legs and back which are the worst affected parts, rubbed at bedtime and she goes to sleep with heat packs to ease the pain.  She gets a headache as a result of the neck pain about 1 a fortnight.  She can get very tired and last Friday she was sent home from school as she was tired, headachy and achy.  She came home and spent the day in bed.  She used to be so active and was able to swim 4 x a week in a squad - if anything she seems to be getting worse not better and cannot attend as much training.  It's horrible to watch her walking around like a little old lady at age 9.  In the last three months even during the day - her best day was 3/10 pain.  Naturally it really gets her down. 

I have been told that the gut in some people can take 2 and half to 3 years to recover - but surely malabsorbtion wouldn't make her feel worse??

Has anyone got any experience of something similar or any suggestions.  

 

1 like, 5 replies

5 Replies

  • laurie99463
    laurie99463 antpring

    Posted

    Yes, yes and YES! This disease is incidious. All of what your daughter is experiencing is experienced by thousands of us; we've just learned to keep it quietly to ourselves. People simply do not understand. MOST DOCTORS simply do not understand. Delayed reactions, lingering reactions (mine for 6-weeks), new and seemingly unrelated attacks from totally NON-gluten foods are not unusual. Lingering muscle and joint pains can be relieved (somewhat) by massage - as you have found. On average it takes 18 months to begin adjusting to the diet and diet requirements. HOWEVER, for many of us it is a daily adjustment. I derived much of my protein from peanut butter. Recently, we discovered my body has developed an intolerance to it. And so, we press forward being cautious, accidently contaminated, sickened, revived, cautious. Hang in there. Enjoy all the more the things most people take for granted, AND DECIDE TO LIVE LIFE TO THE FULLEST! Prayers coming your way!
  • lynda01728
    lynda01728 antpring

    Posted

    Hi, so sorry to hear about your daughter.

    Firstly she must NEVER EVER have gluten.....NOT even a crumb, Everytime she does this is activating her immune system to attack an invader and this is debilitating her further.

    I was diagnosed 2 years ago and suffered many of the symptoms you mention. I have multiple allergies now too but I am starting to feel better. My dietician recommended FODMAPS and although quite difficult initially it is proving to be worth it. 

    Hope your girlie feels better soon.

    Lyn smile 

    • laurie99463
      laurie99463 lynda01728

      Posted

      You are absolutely correct Lyn. FODMAP diet for me too. And no coffee, onions, garlic ... the list continues. ..BUT, so do we! Thanks for you insights.
  • tm62
    tm62 antpring

    Posted

    HI Antpring. I wrote to you yesterday but my post which had a link to a hospital in Sheffield seems to have prevented my post from being published, no idea why, so I will try again.

    I am so sorry to hear about your daughter’s health and her not improving with the GF diet.  I am in my early 50's and was diagnosed with both CD and DH in 2011. I didn’t have the normal symptoms of CD before diagnosis, I had mild stomach problems, skin rashes, awful headaches and generally didn’t feel well.

    Once I found out I had CD I thought that I would start to feel wonderful as I am incredibly strict with the diet, but in fact I did feel worse.  We don’t have any gluten in the house and I could not work out why I felt so bad,  I had an episode where my cramp was bad that both of my legs seized up while I was on the stairs and I could not move either up or down.  

    I assume that your daughter has prescription bread etc. if so does she have the ones which have codex wheat starch in them, if this is the case I would change to the bread which doesn’t have this additive in it.  Also make sure that avoids foods with maltodextrin in which may be made from wheat (according to CUK there is so little gluten in these foods they are classed as gluten free and therefore should be suitable for coeliacs, however I still have issues with gluten free Knorr stock cubes.  The best scenario would be to give up on these types of foods altogether if at all possible but I understand that this is not easy.

    I only started to feel better when I gave up dairy as well.  I would really urge you to try her on a dairy free diet even if it’s just for a fortnight to see if she feels any better, as other people have mentioned the normal doctors don’t seem to be able to help much.  In my case I am of the opinion that my body thinks dairy foods are gluten and reacts in a similar manner.  You should be under the care of a dietician, if so ask them to help you monitor her foods (elimination diet). 

    If she still doesn’t feel any better after you have looked at her diet I would ask to be referred to a specialist, I don’t know where you live but there is a coeliac specialist clinic in Sheffield and I would ask my GP to refer your daughter to this clinic

    https://www.sheffield.ac.uk/news/nr/gluten-related-diseases-1.259247

    Good luck, I really hope you find a solution and she starts to feel better soon as she is so young to not be in good health.  Please let us know how you get on 

  • ladyyak
    ladyyak antpring

    Posted

    Some possible things come to mind which you might choose to consider?

    The body needs time to heal, so the withdrawal of gluten means the healing process can start which takes energy.

    300+ means her gut wall was like a sponge in tatters. ANY food she's eaten in the past could have made its way through the holes into the bloodstream and elsewhere and be causing an intolerance. So you might choose to get some blood tests done to seek out any food intolerances and avoid those 100% (read every label) for at least 2 years. Any slip and go back to day one.(For me, garlic, milk, yeast were the culprits.)

    Milk, I was told to avoid this (my son & I are both coeliac) for 18 months. I understand it is the tips of the villi which absorb milk so are the last to heal.

    Possibly this is a major withdrawal reaction following the introduction of a gluten free diet. 

    Keep every last crumb away from her, watch where the gluten travels and if in doubt leave it out. My most recent reaction was D&V for 3 days, incapacitated I lay on bathroom floor. A friend blacks out. Sothe effects vary and it seems the longer we stay GF, the more severe the reaction.

    I went to a Dr from BSAENM, now Optimum Nutrition I think (?) who was exceptional. Son & I were diagnosed several years apart. Each time we focussed on eating healthy foods, fish, masses of green vegetables to build calcium levels especially, all the colours of the rainbow. No sugar at all. The name of the game was to build a healthy body from the sorts of nutritionally dense foods that could grow in the garden or live there.

    The inflammation feels like having tonsillitis inside. It can hurt.

    Malnutrition casues weakness and inflammation.

    Joints felt better with rub in Devil's claw gel (get from equine store in big jar.)

    I also went for staying at home to facilitate:

    Lots of sleep.

    Lots of love.

    Lots of being and tackling this together.

    Co-sleeping to be as aware as possible of what's going on and to be there to physically comfort my son. 

    I've no medical training so these are just some things I believe might have a positive benefit to you and your gorgeous girl. I wish her best health.

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