Detox - Help Me

[Brackett]

Hey All,

 

Don't know why I waited so long to join this forum - so many questions...

 

I was diagnosed with Celiac Disease one year ago. First with blood work and then ultimately a biopsy. Hard at first to make the adjustment, lots of cheating, lots of telling myself it wasn't so bad, sometimes I actually felt or at least convinced myself I felt better WITH gluten than without.

 

Not until I read a book called "Jennifer's Way" had I ever even heard of the term "Gluten Detox" and I am wondering if my current state is an example of this, or not. The last time I made a serious effort to finally eliminate gluten, I feel as though I felt the same way, but can't remember entirely as I was going down so many rabbit holes to try and figure out what was wrong with me. It went from sinus infections, to tension headaches and to my personal favourite - anxiety (I say this, because in the two years it took to get a diagnosis for Celiac, 4 doctors were all convinced I had an anxiety disorder and nothing else).

 

Anyway - the main thing I am dealing with is a constant feeling of being drunk. Head numbness/pressure. No pain, but just this awful feeling in my head that I can't shake with meds, exercise, anything. On top of which I have so much fatigue. I wake up and within the hour feel like I could sleep another 8 hours. It's awful. Gets worse in the evenings. 

 

Like I said, I had this happen a few months ago and had all sorts of tests - full blood work, a CT scan on my head to make sure it wasn't a brain tumour of something, and everything came back normal. It went away eventually - not sure if that was the natural course of it, or if it was because I introduced gluten to my diet again (something I am strongly considering trying at this point because nobody/nothing is helping). But part of what I read in the book what that it could get worse before it gets better and to fight through it. I'm here because I'm questioning whether or not I am fighting through a gluten detox or perhaps there is something else seriously wrong. I had a neck injury that seems aggravated and wonder if that could be it. I wonder too if it really IS anxiety. 

Has anybody else experienced this before. It's not "brain fog" as traditionally described. I can think pretty clearly when I'm not going insane with the physical sensation. Mostly my forehead feels numb with pressure (can still feel it all). Always there, but can come in stronger waves. Seems to be ok when I go to sleep and when I first wake up. 

Was gluten free 100% for two weeks, felt like a million bucks and now WHAM. Is it normal for it to happen like that if it's going to happen at all?

Anything insight would be so appreciated. Losing my mind.

[kareng]

When you say "Was gluten free 100% for two weeks, felt like a million bucks and now WHAM. "  are you saying you aren't any longer?

[Brackett]

When you say "Was gluten free 100% for two weeks, felt like a million bucks and now WHAM. "  are you saying you aren't any longer?

Nope. I still am. Trying to stick with it and fight through. Giving up the gluten is easy. This drunk/head numbness feeling is AWFUL.

[kareng]

Nope. I still am. Trying to stick with it and fight through. Giving up the gluten is easy. This drunk/head numbness feeling is AWFUL.

Good.

A few thoughts:

You want to make sure you are eating....and enough of different foods, too. Sometimes, people suddenly cut out whole grain bread but don't replace it with gluten-free whole grains ( bread, quinoa, etc). Can mess up blood sugars and give that feeling.

If you are taking any medications, as you heal, you may be absorbing them better than before and need a smaller dosage.

Perhaps you are vitamin deficient? B12? Iron? D?

[cyclinglady]

You have to stay gluten free FOR LIFE! Each time you cheat, you are most likely causing damage. And when your celiac disease symptoms affect your brain or nerves, that damage can be damaged forever or if, you are lucky, recovery is possible. It is kind of like diabetic neuropathy. Maintaining good glucose control may allow the nerves to heal, but for some it is too late!

It takes a year to three years to heal. You might have some good days after being gluten-free for a few weeks, but it really takes much longer to heal.

I am a Mom. So hear me out and take no offense. Your brain (anxiety is a big celiac disease symptom) is obviously not working to it's fullest capacity.

Stop eating gluten!

That said, welcome. Read the newbie page under the coping section.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Ask more questions. We are here to support you!

[nvsmom]

It could be a withdrawal. A minority of people seem to experience withdrawal when they go gluten-free - I did. It's unknown if it if withdrawal to the gluten, wheat or what. My carb lad didn't change much when I went gluten-free so something else was at play.

I was very tired and cranky, and I had a headache that was truly impressive, for about a week or so. Most people who experience withdrawal hit it in the first week and are done by week three.

In Jennifer's book, she talks about a "detox" that lasts a year or so. I think what she calls detox, most people would call recovery. Recovery is usually 2 steps forward and 1 step back... Some months are 2 or 3 steps back but the overall trend, if you stay gluten-free, is always forward.

Good luck. I hope you stick with the diet from here on out. Try to remind yourself that the diet is mandatory and not something a celiac only follows periodically. Best wishes!