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As Close To A Diagnosis As We're Going To Get

October3

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October3 Explorer
October3
Posted

Finally got a call back today from the clinic where we took my son for a second opinion. The doc made a bold statement and diagnosed him as "potential celiac". I think that's about as good as we're going to get at this point, so I'm pleased.

The scope he had a year ago had previously said everything was totally normal. Then I had heard from this clinic (they re-examined the biopsy slides) that the review also showed his biopsy was totally normal. However, when I got the GI's official response he said there was a mild increase in intraepithelial lymphocytes in the villous epithelim which apparently by itself isn't adequate to diagnose celiac disease just like my son's persistant iron deficiency anemia isn't enough to say celiac disease and a moderately elevated tTG isn't enough to say celiac disease, but put all of them together and I guess its enough for this doc to say "potential".

The result is the same. We're back to gluten free. I guess if the symptoms don't resolve off gluten (meaning his tTG stays high and the anemia doesn't resolve) we'll re-evaluate, but it seems unlikely that will be the case. So I'm thinking this time its for good.

Thanks to everyone who held my hand or hit my head against the wall when I needed it. :P I feel like we're finally somewhere stable.

Any advice for this weekend. Better to make it low key and not a big deal or do we have a last gluten party?

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mushroom Proficient
mushroom
Posted

Yay, October3, a sensible decision by the GI by the sound of it. I am so happy for you. Here's to your son's health. I don't think a gluten party is a good idea as it will just reinforce to him what he is losing. I would do a transition, low-key. Give him perhaps one of his favourite gluteny foods but don't even tell him you are removing the gluten. Just do it bit by bit and then you can :"lay it on him" that this is how it will be from now on.

October3 Explorer
October3
Posted
  • Author

Yay, October3, a sensible decision by the GI by the sound of it. I am so happy for you. Here's to your son's health. I don't think a gluten party is a good idea as it will just reinforce to him what he is losing. I would do a transition, low-key. Give him perhaps one of his favourite gluteny foods but don't even tell him you are removing the gluten. Just do it bit by bit and then you can :"lay it on him" that this is how it will be from now on.

Thanks Mushroom.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Any advice for this weekend. Better to make it low key and not a big deal or do we have a last gluten party?

Why not have a Gluten Free Party? You could make a delicious gluten-free cake or cupcakes and celebrate a "new" healthy beginning? Most of the gluten-free cake mixes are really good, and the Betty Crocker devil's food is delicious! I would try to make it as positive of an experience as possible. Better to focus on what he CAN have rather than what he CAN'T. ;)

October3 Explorer
October3
Posted
  • Author

Why not have a Gluten Free Party? You could make a delicious gluten-free cake or cupcakes and celebrate a "new" healthy beginning? Most of the gluten-free cake mixes are really good, and the Betty Crocker devil's food is delicious! I would try to make it as positive of an experience as possible. Better to focus on what he CAN have rather than what he CAN'T. ;)

That's a fantastic idea! Thanks!

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