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gilly31

Newly Diagnosed And Feeling Worse Than Ever. Is This Normal?

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Hi everyone,

I was diagnosed 2 weeks ago by biopsy. My GI told me that I hadn't suffered a LOT of damage and that both he and the pathologist who did the biopsy were under the impression that we had caught this pretty early. He also suggested that because of this, I should start feeling better relatively quickly once eliminating gluten from my diet. My issue is that I am feeling worse than ever after 2 weeks gluten free. I'm being very careful, so I know I'm not accidentally consuming gluten. It just seems like I keep reading so many stories of people feeling better instantly, and I am certainly not experiencing that. I'm sure I'm just being impatient, but did anyone else have the experience of feeling worse before they felt better? Could this be gluten withdrawal?

Thanks in advance for your help! This site has been so useful as I have been going through the process of getting diagnosed.

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When I went off gluten, the withdrawal was so bad that it reminded me of scenes from movies showing addicts kicking heroin. I had chills and sweats, insomnia, irrational thoughts, inappropriate anger, etc. That said, many people on the board report experiencing withdrawal, and the withdrawal looks different by individual. So, yes, you could be experiencing withdrawal. (Ever given up sugar? Or caffeine? Also, substances that cause withdrawal.)

Just bear with it. You'll start experiencing the benefits. It's comforting that you have a diagnosis and know that this is the right thing to do for yourself.

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Being new to this diagnosis as well, I can say that while there is an initial thrill associated with some symptoms resolving, there have been some unexpected symptoms too. There are ups and downs...

For example, my bloating has improved pretty steadily, but I began experiencing night sweats (for the first time in my life) pretty consistently for the two weeks or so after I went strictly gluten-free. Dreams returned in an incredibly vivid way, so much so that I had to wonder what my poor brain was working through! :)

Also, a lot of my brain fog lifted fairly quickly, but then I began experiencing new, really unsettling neurological symptoms like lightheadedness, vertigo and ear fullness, and I've had a continuation of some mild speech disturbances.

My theory is that, in addition to my body healing, it is already getting more sensitive to gluten, and since I've still been moving along the learning curve, I think I was getting some cc. However, ever since I made some additional adjustments in our kitchen - like creating better systems for how my husband prepares his gluten lunches and does the accompanying dishes - I have noticed an additional improvement.

So, maybe that is my longwinded way of saying that ups and downs are normal, but also use this as an opportunity to identify any cc you may be experiencing. Good luck!

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