Coeliac in 7 year old

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Hello.

My son has recently had positive blood tests back for coeliac's from the GP. We are awaiting a referral, how long does this normally take?

Also my GP didn't think he would have an endoscopy because of his age, is this right?

His skin has always been bad due to eczema, but in the last week or so he has really bad dermatitis all over his chest and tummy, is this related?

Thanks

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5 Replies

  • Posted

    Oh, boy! Our sons sound so much alike!

    My younger son is now 8, and was diagnosed at age 6. He was 5 at the time of the blood test, but turned six between the results and the endoscopy. Yes, he needs to have biopsies and endoscopy done. You'll probably have to wait a few weeks for the procedure date and another few weeks for the results. 

    My son's gut has since healed but his eczema persists, I'm sorry to say. If you think your son has DH, that will resolve after sufficient time on a strictly GF diet, which you can't yet start.  You may want to have his rash biopsied.

    Continue with his typical diet with plenty of gluten until all tests are complete. I wish this weren't necessary, but it is...

    Good luck to you both and please keep us posted!!

     

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  • Posted

    It depends on the digestible health specialist if he has an endoscopy but I would think they would for further confirmation and to know exactly what the intestines look like now. While you wait for his next appt I would suggest you take wheat/gluten out of his diet immediately. Read everything you can on celiac, and get prepared for real life changes in the diet. If the rash clears up, which it just might, you'll know it's from wheat intake. Good luck☺
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  • Posted

    This is what confuses me as the GP has told me to start gluten free, which we have done whilst we wait for testing, as she thinks no further biopsy/endoscopy will be needed, whereas NICE guidelines suggest carrying on with gluten until all testing has been done, however it does state that that can be age dependant, and will depend on the specialist.

    The reason he was tested initially was due to weight loss and loose stools, they then found he was anaemic. His eczema has always been bad but has got worse in the last year, and this rash is very new but definitely more of a dermatitis type rash.

    It is a bit of a waiting game, I was hoping I would have heard from hospital as his referral was done coming up 3 weeks!

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    • Posted

      It sounds like your doctor doesn't know enough about coeliac disease or DH if he/she is recommending a gluten free diet already. If an endoscopy is done, your son must eat gluten for at least 6 weeks on a daily basis otherwise the result will come back negative (you need to do this to get the auto immune response). It varies from hospital to hospital and different districts, how long it takes to get seen. You could try ringing the hospital you are being referred to and speak to them in the endoscopy department to ask how long it usually takes to get referred.
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  • Posted

    Hi lalala, 

    I fully agree about the endoscopy.  Referral is not a matter of, "how long" it is a matter of, "WHO?"  Make certain you are working with someone who has many patients with the disease.  The rash takes time; unfortunately years.  That portion of the disease lives within us.  In a way it becomes a monitor of whether we have a true contamination or a false contamination.  In other words, in my case, I have the extreme breakout, blistering, cracking and bleeding when I have truly been glutened not when my body temporarily (4-6 days) goes into what looks like a gluten attack because of all the other symptoms.  In my case my illness lasts 6-weeks almost to the day.  It is a delayed reaction often taking 24-48 hours to begin.  Those of us on this string are so happy and eager to help others.  Let us know whatever questions you have.  My caregiver is one of the worlds foremost experts at Stanford who also has the disease.  Look for the best for your child.  Blessings!

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