Daughter needing to go gluten free?


I'm wondering if someone can help me out. My daughter has just turned 6 and is suffering terribly with lethargy and emotional outbursts, headaches, feeling sick, 'stinging' tummy aches which are usually relieved one she has been to the loo. She often has wind. she has some days where she experiences these symptoms worse that others. Since being put onto solid food she has always been a very low weight and struggles to put weight on. all of which seem to be symptoms frequently mentioned in relation to gluten free. She has been seen by pediatrics who are telling me she cant be gluten free as she doesn't get diarrhea and because the ceoliac blood test came back as negative. Should I give up on this or go with my gut and try her on a gluten free diet?

Any other suggestions would be gratefully received! 

8 Replies

  • Hi. Sorry to hear your little one is not very well. There is no reason why you could not try a gf diet for her for a couple of months and see how she feels. If no better then you know you have tried it. But I think wirh most people who have a gf diet they feel less sluggish and more lively. Also vitamin d and calcium supplement  for her bones.  Good luck xx

  • It is possible to be 'Non Coeliac Gluten Sensitive' which is a whole lot better than being coeliac, but still requires a gluten free diet. The only difference is that there is less permanent damage done to the gut.

    You should know within a week or two if it makes a difference as it takes just a few days for the gluten to be out of the system. It would be longer before she is totally well, once the gut has healed. 

    If going gluten free doesn't work then you could try eliminating dairy from her diet. As with gluten, it means reading every single label because milk in its various forms is hidden in some very unlikely foods! 

    I am reading an excellent book on IBS (which is what I suspect your daughter's illness would be classed as if she were older) 'The Digestive Health Solution' by Benjamin Brown. He goes through all the research in a very straightforward and readable way, and ends the book with a simple plan for sorting it all out. 

  • A trial of gluten free may help you to find out.  My son had similar and going gluten free really helped. He was well for a couple of years but after his symptoms increased he is now gluten and lactose free and on a low fodmap diet. He is hypermobile and we saw a specialist who was fantastic. A probiotic and children's vitamin supplement including vitB and D may also help.  Good luck. 

  • You have not idea what is causing the distress.  Perhaps putting her on an elimination diet and reintroducing foods would go along way to investigating whats wrong?

  • I agree with the replies so far, it will be a lot of trial and error, but nothing worse than having a child who is violently sick and feeling so lethargic. I personally have no time for Doctors (personal experience of being sick for 25 years) I would suggest eliminating one thing at a time, maybe every few days, but also eliminating foods with gluten, sugars refined..salt..refined, and then milk, cows milk and basically all animal milk is meant just for what they were created for animals, If you are worried as she is only 6 maybe find a good nutritionist but one who is fully qualified and like Medical Doctors they will not agree with the same treatments or elimination process.

    Check out Dr Axe, Peter Glidden, Joel Wallach type into you tube some of your daughters problems and or Dr Axe has his own web site.

    Wishing you and your daughter well.

  • Hi please retake the blood test as it can give a false negative and if it is coeliacs then giving up gluten is important but it it very important to get the bloods retested how is her Iron levels etc ask for a full blood count as well it is important that she eats at least two portions of gluten a day prior  to the blood test as the gluten causes the antibodies to apear  in the blood so avoiding prior to the test will give a false reading. it's very frustrating but get it identified as a short courses of gluten free won't help if it is coeliacs, as it can take up to two years to heal the vilia in the stomach.

  • It's a very fine line here between doing the right thing for your daughter and venturing into the realms of appearing to causing distress to a minor.   What does the doctor think it is?   You sound as though your are in the system so ask for their help.   It could be a food allergy rather than an autoimmune disorder (like coeliac disease).    It really could be anything and needs investigating.   Ask to see the notes - you might be surprised, they may feel it is akin to IBS.   No offence but you could cause malnutrition and make her vulnerable to infection.  Eliminating key food sources is hard enough for adults, let alone the growing young.    If you get coeliac bloods repeated ask for the 4 key ones.  Good luck.  

  • hi I'm in a similar position as yourself my daughter is 6 and gas always had feeding n tummy problems from birth. . She gas very low IgA antibodies which affect coeliac blood tests although I'm told special bloods were done and stil no confirmation yet she continues to suffer .she has been on tummy medicines from birth n has continuous difficulties with constipation n has various daily medicines fir that too .she has to take antibiotics 3times a week for low IgA . Her dietitian believes she is coeliac but bloods are not showing coeliac only way to do this is by biopsy. I myself am coeliac and have the rare complication of coeliac disease Refractory coeliac disease I was not diagnosed as a child and years later damage was too severe too little too late. I'm convinced my daughter is coeliac all the symptoms r der poor weight faltering slow growth tummy pains lethargic emotional outbursts even very low moods etc I would put my daughter on gluten free tomorrow but I was advised this would affect any chance of a diagnosis of coeliac n my daughter s being investigated by a gastrointestinal consultant I may have to go ahead reluctantly n agree to a tummy biopsy as this is the only way coeliac condition can b truly diagnosed. Bloods do not always show coeliac disease especially in kids n there are varying syptoms diarrhoea constipation etc so push for further investigation ask fir a dietitian their input is excellent and be firm with GP to follow with tests n more investigation even ask fora medicine to help ur child eg Buscopan to help with pains etc meanwhile whilst you wait for more investigation. Don't give in I certainly won't . I hope you get some help . Push ur Gp to get ur child seen by gastrointestinal consultant n dietitian to get necessary test n monitoring done. I feel for you my child doesave a bowel condition and the hospital agree as she has been in hosp many times just not getting coeliac diagnosis which I believe it is so biopsy is way forward.good luck n hugs to ur child give food little n often snack foods n try jeep eating time happy keep sugar levels up wen der r outbursts. Let ne know how u get on x

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