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Negative Test Discouragement

Gettingtothebottom

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Gettingtothebottom Newbie
Gettingtothebottom
Posted

I have been dealing with a lot of symptoms for years and have within the past month learned about Celiac. I feel like I fit the profile for Celiac but my blood test came back negative today. I am at a loss.. I feel like I really need to be gluten free but I also really want to know for sure what is going on with my body. I am having a lot of trouble finding a physician who will see me through to the end of this. I am sick of dead-end testing and puzzled doctors. I have general pruritis, fluid filled blisters on my fingers and on the inside of my lips, chronic constipation and bloating with gas, arthritis/tendonitis (I'm 27 years old!), my periods are way out of whack and I am infertile. I have text book childhood Celiac dental issues. I have the mental fog and constant fatigue. I feel like I am an old lady. I am struggling with whether or not I mentally need that medical diagnosis closure and was hoping someone may have some advice or encouragement. Thank you!

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kareng Grand Master
kareng
Posted

Have you had the skin next to an active blister biopsied for DH? A DH diagnosis is a Celiac diagnosis. Someitmes the blood tests aren't as sensitive as they should be. Get a copy of the actual tests. You never know. Some on here have had the wrong tests read as Celiac tests.

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ravenwoodglass Mentor
ravenwoodglass
Posted

If I had to have positive blood tests before diagnosis I would have been, as my current GI puts it, 'diagnosed celiac by autopsy'. I was repeatedly blood tested and repeatedly false negative and I was very, very ill (understatement of the year lol)

Since the blood tests were negative no doctors thought to do a biopsy.

I did finally get my diagnosis from the doctors but it was after years of searching and progressive disability.

My current doctor suggests all his patients with symptoms of celiac do the diet after testing for at least 2 to 3 months strictly. As he said sometimes the body can tell us what the tests cannot. After you have finished all celiac related testing then give the diet a good strict try for a bit.

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