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Advice Re Biopsy Please!

CoeliacinSydney

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CoeliacinSydney Newbie
CoeliacinSydney
Posted

I'd love some advice here. My youngest son age 10 started becoming symptomatic around Christmas time. I immediately took him for blood tests because my eldest son has been Celiac for four years. Of course his blood were positive.

He went gluten-free straight away and has been so for approximately a month (since the results). He is also having some issues with lactose (although not intolerant) but we are trying to cut back on that until he has healed. His symptoms are improving although he is still getting stomach cramps, but not as many. So my GP has recommended we see a Gastroenterologist for advice. The Gastro has sent me an appointment letter for mid May, saying that he must go off the gluten-free diet TODAY before the appointment and has scheduled a biopsy for the same week. Given that the biopsy for my elder son just confirmed what we already knew (his symptoms were not as bad as what we are going through now with my younger child) and she literally walked out from the theatre and said "yes he has it" and then we were pretty much on our own, I am incredibly reluctant to put him on gluten again.

Has anyone else had a similar dilemma when it comes to biospy? Sooooo frustrating! Why would I want to put him through 2.5 months of hell to get a diagnosis that we already know given it is genetic and his brother has it??? Should I try to find another Gastro who can see us sooner or am I wasting our time and money?

Thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Personally I would not put him through over two months of poisoning to have the doctor tell you what you already know. Plus if he has been gluten-free for a month already he could become seriously ill during the challenge. I would ask your ped why he thinks this is needed when you already have one diagnosed child and your son's blood work is positive.

rosetapper23 Explorer
rosetapper23
Posted

This is sheer ignorance on the part of that doctor! Celiac expert Dr. Alessio Fasano has stated vehemently that a biopsy is no longer considered the "gold standard" for diagnosing celiac. As a parent, you need to stand up to this ignorance--your child needs to be protected in this instance. Good luck!

mushroom Proficient
mushroom
Posted

I agree with the pp's. The biopsy in your son's case is not necessary, and will only cause him needless suffering. I would eliminate the lactose for your son altogether until he is at least six months gluten free and that may well take care of his stomach cramping. Almond milk, while more expensive, is delicious, and you can give him sherbet instead of ice cream until he is healed. You can also use rice milk although some people have problems with Rice Dream due to their filtration process with barley. But I have used both rice and almond milks (and hemp although I am not sure if it is available in OZ - it is not in NZ) for baking. Also coconut milk is a possibility. I actually gave up lactose before I gave up gluten (not knowing about gluten :rolleyes: ) and it made a big difference. I was, however, able to eat cheese and yogurt since most of the lactose is digested by enzymes and cultures in these prodoucts. The fact that he is lactose intolerant is a pretty good indicator that his biopsy would be positive.

If he is improving on the gluten-free diet (especially with the removal of lactose), you may be able to get a celiac diagnosis from the GI without the biopsy. Best wishes for you and your son.

CoeliacinSydney Newbie
CoeliacinSydney
Posted
  • Author

Thank you SO much everyone. I had already decided the biopsy was just cruel, but needed some backing! We've switched to soy milk and he seems alot better. I've just had the gene test so it will be interesting to hear the results, because the blood tests were negative.

mushroom Proficient
mushroom
Posted

It was my understanding from your initial post that his blood tests were positive - perhaps I misunderstood. I believe you said he had been gluten free "since the results". At any rate, I am glad he is doing better. I personally do not recommend soy milk for any gluten intolerants as so many of us have problems with soy as well as gluten. There are many delicious milks like rice, almond, hemp, coconut.......

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