Symptoms

[Tabitha1723]

I found out I had celiac one year ago. It was refractory they said likely I have had it since I knew I was anemic when I was little. I’m 32 now went through three pregnancies and nursed for too many years. Felt terrible the whole time. Finally went for a physical and told him how I never had energy and was anemic. I told him about all these other weird symptoms the reason I went in. Curious if anybody else has this. I have pain that comes and goes in my veins on the skin and sometimes in my bones. Stabbing pain, a pinching squeezing pain or just plain needle poking pain. It comes on whenever it wants like flares and goes away. Going to the doctor again really would like relief. Wondering if it’s just from the damage of celiac or something else or what I should ask to be tested for. 

[plumbago]

Your pain and other sensations sound like it could be a neuropathy and/or paresthesias. Yes, get them checked out. I would recommend tests for vitamin deficiencies, like B12 especially (unless you've already had those?). If you are known to have anemia, is your medical provider putting you on a supplement to get your iron and/or red blood cell count back up? Anemia is a complicated condition, and it's critical to know precisely what the cause is, as there are different types of anemia, so that treatment can be efffective.

Plumbago

[trents]

Welcome to the forum, @Tabitha1723!

One thing that doesn't compute for me is that you say you were told you likely have refractory celiac disease. Refractory celiac disease does not have to do with having it since childhood. Refractory celiac disease is celiac disease which does not respond to a strict gluten free diet. Are you now on a strict gluten free diet and if so, how long?

Edited November 25, 2023 by trents

[Scott Adams]

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.