Worried about my daughter

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My daughter is 17 and was diagnosed 3 months ago. She has went down to a size 6 from a size 14 she doesn't like anything, I'm trying to get her to eat properly but she says it all tastes horrible and everything makes her sick. I got her to eat a gluten free roll today but it still made her sick and gave her cramps. She just lies in bed crying in pain and will barely eat anything as she is so sick all the time. I'm worried sick and seem to get nowhere with doctors and when I take her to hospital they give her morphine and send her home.

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  • Posted

    This is a scary time for anyone let alone a 17year old, Why don't you suggest a trip to McDonalds.......yes McDonalds !!! I have fairly recently been diagnosed too, I went onto one of the forums and they said you can have a beefburger as they dont put rusk or anything with gluten in them, they also cook their chips seperately so they are not contaminated from anything else.  I went into McDonalds with my two grandsons and the nicest young man said I will prepare your burger in a seperate area and would I like garnish mayonaise etc, I took in two slices of my GF bread, they were fantastic and I was able to enjoy my meal with my two grandsons.  Both you and your daughter have to be scrupulous about cross contamination, using her own chopping board,not using a knife after someone else has used it to spread butter on glutenned bread etc, she has to understand that this is not an option she can ignore. if she has a prescription for GF products get her to pick what she wants and change them the next month till she finds something that is pallatable. the equation is simple GLUTEN HURTS HER. once she gets into the mindset of that she will get better. Be careful of hidden gluten- in sweets, gravy , sauces etc.  also check out whether or not she has developed a lactose intollerance since going gluten free.  It happened to me, I could'nt understand why I was sick I knew I had eaten only GF cereal with cows milk, that was the culprit, whch I found out through a process of elimination.  Good luck hope your daughter improves
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    • Posted

      Thank you I'm just so worried about hershe getting to stage she just won't eat at all. It did cross my mind it was lactose funny enough so will push docs to get her allergy testing to find out.
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    • Posted

      you could try her out with lacto free milk and cheese etc, check for lactose in anything that she is eating too, If lactose is the problem she will find her own level of tolerance.  It can be temprorary too. There are lots of alternatives, I make sauces with cornflower and lacto free it just tastes the same. Custard, cream of tomato soup etc. its on special offer just now at Tesco 3 for £3, generally about £1.35per litre. I got lactose in some anti inflams and threw  up after one tablet, you have to be so careful.  
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    • Posted

      Well we spent today in hospital but no further forward apart from giving her anti sick meds and morphine they can't do anything so need to wait for appointment but going to speak to doc about lactose intolerance 
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  • Posted

    How about sweet fruits and vegetables? Does she like those? I ate a lot of fruits and I gained weight sad but in your case it might help..
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  • Posted

    Sorry to hear about your daughter's problems. I've only gone gluten-free fairly recently after many years of gastro intestinal problems, and the diet has made a huge difference thank goodness.  So persevere, and although some GF products are indeed horrible there is a lot of good products around, and more are appearing all the time. Can I suggest a few things that I have found especially good:

    "Nature's Path" breakfast cereals (particularly Mesa Sunrise and Maple Sunrise);

    "ds" (Dr. Schar) products such as White Ciabatta Rolls, from all main supermarkets;

    "Eat Natural" Fruit and Nut bars, Darker Chocolate;

    Marks and Spencer are brilliant for things such as sausages, (virtually all their sausages are gluten-free), GF burgers, GF quiches, and GF pasta, which all taste as good as regular stuff;

    Sainsbury and Waitrose also have decent selections of GF products.

    It's really a matter of trial and error. Some things will be a success and others won't, but she shouldn't be discouraged.

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  • Posted

    You can get problems with dairy if you are coeliac, because the part of the gut which digests dairy has been damaged. In many people this heals after they have been on gluten free diet and the gut gets better. It seems to me that your daughters gut is still very delicate - making all food a problem. In time this should improve.

    Before diagnosis my son, who was only 2 at the time, could not hold down any non-pureed food for more than an hour, even tiny lumps in baby food for 7 month old babies was projectile vomited after an hour. 

     

    It must be really difficult for you, could you phone Coeliac UK? I guess just eating anything at this stage would be OK, eating 'properly' may take a while - small tin of heinz tomato soup, or home made gluten free chicken or veg soup, may be easier to digest than 'solid' food - then perhaps gluten free biscuits, cakes or crackers - fruit juice - scrambled eggs - baked potato - rice noodles - boiled rice or risotto (make sure the stock is gluten free) - oven chips with heinz ketchup - gluten free sausages - or even a Macdonalds burger!?

    In your situation I would ask whether you could see a dietician to help, but perhaps start with small, easy to digest meals and gradually increase volume and introduce new things as and when you daughter feels ready, keeping in mind her stomach lining probably needs time to heal. I can remember the agony of my son refusing to eat anything, it was horrendous, so i can feel for you.

    Get your daughter involved in the decisions - let her take the lead - I think this is really important for girls in particular - although it is very, very hard for parents!

    I would suggest forget about gluten free bread for the time being - it's generally not very nice, overpriced and really only a 'convenience' food for holding sandwich ingredients. Once she is well then start looking again - get all the free samples from companies and find your favourite, get what you can on prescription. (If you can find the DS breakfast rolls, which are sweet and more like brioche/cake than bread, they may be the easiest 'bread' for a delicate stomach.)

    I hope she gets well soon. This is really difficult for you both - hang on in there!

     

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