Celiac diagnosis in my daughter

[Lindsey Clark]

I was worried my 12yo had anemia so she’s just had a blood test and it’s apparently clear cut celiac. The doc said it was the highest levels she’d seen for ages. The iron levels were ok but I understand that doesn’t necessarily mean she’s able to absorb it properly so still could be anemic (is that right?). Also low neutrophils. This is all very new to me - we found out yesterday. 
so, apparently she now has to have an endoscopy, and has to continue normal diet for now. That’s going to be really hard - I’m going to feel like I’m poisoning her at every meal - knowing it’s causing so much of her problems - GI issues, low mood, poor concentration, fatigue- . 

Surely if we switch to gluten-free diet and symptoms go, then case is proven?
what is the value of an endoscopy in this scenario?

And any advice is warmly welcomed, start of a long journey 

[GFinDC]

Hi,

It is much easier to get the correct test results by staying on the gluten-free diet before testing.   Going off gluten and then intentionally going back on gluten for testing can cause very unpleasant symptoms.   Some people say it makes them feel worse than before.

You could ask the doctor if it's ok if she cuts back gluten to a lower level, like a single slice of bread each day.  Another thing that can help symptoms is to stop all dairy.

Peppermint tea can help with bloating.

There is something called a 504 plan that can be done in schools to assist her with her condition.  But she might need a formal diagnosis for the school to create a 504 plan.  https://www.understood.org/en/school-learning/special-services/504-plan/what-is-a-504-plan

Edited July 7, 2020 by GFinDC

[Awol cast iron stomach]

4 hours ago, GFinDC said:

 Some people say it makes them feel worse than before.

Yes.

[cyclinglady]

Please do not think of gluten poisoning your daughter yet!   Just like getting vaccinations or a blood draw, sometimes medical requirements/procedures are tough on your child and you, as a parent.  An endoscopy can be very valuable.  Not only can it confirm celiac disease, but the GI can check for other concurrent issues like SIBO or an ulcer that would require additional treatment. The GI will determine the severity of the damage caused by celiac disease.  This benchmark will be useful in the future.  A repeat endoscopy can determine complete healing.  I had one and it was invaluable for me.  There was no doubt that I had celiac disease.  Made adhering to the diet a lot easier.  
 

Your daughter may be slightly anemic.  Ferritin levels (stores can be checked), but the reality is that she seems to be processing iron well based on your comments.  Once gluten free, any potential signs of anemia should resolve fast.  Iron supplementation might not be needed at all.  I have two anemias.  One is genetic.  But my iron-deficiency anemia was so severe that my doctors kept recommending blood transfusions.  If her anemia was severe, you bet her doctor would have recommended iron supplements or blood transfusions right now, before the endoscopy.  Know that iron supplements can be hard to digest.  And does she need more stomach upset right now?  I think you need to weigh all this with her doctors.