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Reny (@reny)

Celiac Disease (refractory type)

Digestive Health | Last Active: Oct 16, 2019 | Replies (22)

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Hi , I have been diagnosed with celiac disease since three years. Though I am off gluten still I have so much fatigue that I cannot stand even for 1 min.I have been tested throughly and my WBC is low always and keeps on fluctuating between 2000-5000.I have extreme fatigue that I feel like dying .What should I do

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Replies to "Hi , I have been diagnosed with celiac disease since three years. Though I am off..."

Hello @iiqquu, Welcome to Connect. There is another discussion where you can meet other members who share your symptoms. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion:

> Groups > Digestive Health > Celiac Disease (refractory type)

Here’s a Mayo Clinic article that might also interest you:
– Classification and Management of Refractory Celiac Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861306/

@iiqquu, may I ask if you are taking any medications to manage the celiac disease symptoms?

This is so hard. So many of us have been just where you are. When the villi is so damaged it takes years to get any significant healing. The nice thing is…healing is possible.
How is your thyroid function? Hashimotos is common along with Celiac Sprue. I would think about that or other autoimmune diseases that might be in play.
This disease like any other really, is such a mental game too. Not like mental illness and not depression, but simply mental exhaustion. Go with the exhaustion, don’t fight it, that in and of itself is exhausting. But…also do what you can…when you can. Like a short walk inside the house…or stand for a bit…or sit and move your arms and legs.
Look into the AIP diet. The foods are so healing and lessen inflammation in your body. Every bite needs to be nourishing. Nothing processed for now is best. You will be amazed at how a few changes and learning about what your body needs does to speed healing.
Smile often, for mental energy. Read everything you can about Celiac and food choices. Get your body working with simple moves. Ask for help from everyone who can and will. Get good passionate medical help, demand tests and answers. You are not depressed, you are sick and need help.
You can make it past this stage, keep a diary to see your progress.
Every food might seem to bug you, keep eating right and it will get better.
Many of us can’t do oats, no one mentions this, grains of any kind are hard to digest when you are in this storm.
Keep fighting… never give in…live and smile and laugh. Surround yourself with loving caring people.
Someday soon you will be better❤️