"My body hurts so I can't play" (age 3) update pg3

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amother

DarkYellow

Wed, Jul 24 2024, 11:59 pm

amother OP wrote:

I'm just beating myself up for not following up on this sooner. a whole school year of pain... and now I have to keep giving him gluten because our appointment is in another month...

Is there a way you can get an earlier appointment through an organization like Refuah etc.?

amother

↑ Honey

Thu, Jul 25 2024, 12:02 am

amother OP wrote:

I'm just beating myself up for not following up on this sooner. a whole school year of pain... and now I have to keep giving him gluten because our appointment is in another month...

would you cut or at least minimize gluten until the appointment?

Thisisnotmyreal

Thu, Jul 25 2024, 12:11 am

amother Honey wrote:

would you cut or at least minimize gluten until the appointment?

Maybe even for two weeks now and then resume later. Don't beat yourself up, the medical field is a nightmare to deal with, getting bounced around from doctor to doctor each a month apart. Ugh.

amother

Nectarine

Thu, Jul 25 2024, 12:20 am

It sounds like you may have figured it out, but he could also have serious vitamin deficiency.

↑ giftedmom

Thu, Jul 25 2024, 12:24 am

If it does turn out to be celiac you need to educate yourself on a gluten-free diet, cross-contamination etc.
also keep in mind he might have trouble digesting dairy until his stomach heals. So minimizing that can also help ease his symptoms.

kiwi strawberry

Thu, Jul 25 2024, 12:35 am

OP when you say your appointment is in a month, is that the initial intake appointment with a GI? Because that is not the appointment that you need to be on gluten for. That one is the endoscopy which doesn't happen right away. First you have an initial appointment where they do their own bloodwork. Then (if the bloodwork shows celiac markers) you schedule an endoscopy, which can be months away. So technically you can go off and go back on. That's what we did.

amother

↑ Mintcream ↓

Thu, Jul 25 2024, 12:36 am

amother Honey wrote:

would you cut or at least minimize gluten until the appointment?

Please don’t!! You have to be exposed to gluten in order for the celiac test / endoscopy to show the reaction.

Don’t do anything without asking your doctor please. Iyh a refua sheleima to your son. Celiac can be difficult but if that’s what it is it’s manageable and iyh he should regain his koach.

amother

↑ Mintcream

Thu, Jul 25 2024, 12:37 am

Any way to get a quicker appointment? I’ve had luck on cancellation lists. Dropped everything and ran for next day appointments

amother

Magenta

Thu, Jul 25 2024, 1:31 am

kiwi strawberry wrote:

Also,
Initial gi appt they will ask about his diet.
If you can, keep a diary of what he eats and how it correlates to pain etc. it will most likely be helpful to log it all to give an overall picture of what he eats and symptoms of that day etc.

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