should my 2 1/2 yr old have a full diagnosis?

My little man had a blood test but it came back negative, Gp still thinks he may be coeliac though as he has such a strong reaction to gluten and to anything that has been contaminated. He has advised not to get a biopsy as it could be very stressful for him. He has diagnosed him as having partial coeliacs so he can still get a prescription. My only issue is if we class him as coeliacs then he will never have gluten but if it is only a intolerance that he may grow out of we may have given him a life sentence for nothing. sorry for rambling but this is all very new to me and a bit of a shock

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  • Hi Dani, I would ask your GP to refer you to a gut specialist because either the little fellow is a coeliac or he isn't. Because saying he's partially a coeliac is like likening someone to being partially pregnant.

    Now one reason that his blood test has come back negative could be down to the fact that you are keeping him off gluten and if he were to have a biopsy he would have to eat gluten for 6/8weeks.

    I think that you need to pursue this and just because you do, does not mean that he has to have a biopsy. So a Gut specialist is in my opinion the person that you need to consult over this for a more definitive diagnosis.

    Feel free to ask any questions that you like as there are other parents of coeliac toddlers on here some diagnosed others not, here's one who has a 3 year old son and here's her website it may interest you:

    feedingmyintolerantchild.com/

    Good luck and let us know how you get on.

    Jerry

  • My 3 year old had the biopsy and was jumping on his bed within.half an hour of returning from theatre! I think you are right, you need to get a proper diagnosis for him as this is for life. Also, another point is its easier to go thru the necessary glutening while they are still in nappies, it protects our children's dignity which I feel is important. Good luck, let us know how you get on.

  • get a proper diagnoses!!! there are all sorts of health implications here---- for example ,,,If he is NOT coeliac he needs treatment for whatever IS wrong

    i agree with the other poster who says that you cannot be partially coeliac, there is no such thing as partial type 1 diabetes, pregnancy,arthritis, appendicitis, etc, etc

    good luck and remember this is YOUR child no-one else knows him as well as you and more importantly no-one will fight for him as strongly as you.

  • My daughter was diganosed at 2 1/2 her blood test was normal but the peadiatrition said she had to have a biopsy, and her gut told a different story, ask to be refered to the peadiatrition,

    Lynne x

  • thanks for your advice, I'm taking him to our GP today to request a biopsy, might be a battle though as he said he wouldn't do it to his dog!

  • Definitely get a proper diagnosis! Where is your GP coming from?????? To delay diagnosis is only going to cause your wee lad far more problems further down the line.

    And actually, an endoscopy and biopsy is now a really easy test - the way they do it these days under good sedation you don't feel a thing and don't end up with the sore throats you used to 20 years back when endoscopes were a lot lower tech than now.

    I'd insist that your GP refers him to a pediatric gastroenterology service though, rather than just ordering a biopsy himself - your boy does need to be under a gastroenterologist anyway if he has coeliac, so its not just about the GP getting the biopsy result.

  • I also question the fact that your GP could continue to give him gluten free prescriptions without a formal diagnosis - everywhere I know of you have to have the biopsy proven diagnosis or at some point or your NHS/PCT could just stop supplying gluten free presciptions. A friend of mine had hers stopped for that reason.

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