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Withdrawal Symptoms

Lkjoy930

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Lkjoy930 Newbie
Lkjoy930
Posted

I've been completely gluten free for a few weeks. I started initially going gluten free at the end of March but gave in a few times and it was NOT worth it, really bad headache and fatigue. But because I don't have the "official" diagnosis yet I'm not sure if what I'm feeling is normal. My overall symptoms have not improved much. Even after being gluten free for 3 straight weeks my symptoms are not better, I just notice I feel worse after eating gluten. And lately I've been experiencing even worse fatigue and sometimes sort of blurry vision at night. Also I get a headache every single night. Does this seem like withdrawal symptoms? I expected some symptoms for the first week but didn't really get any until now. I am deficient in iron and vitamin d. I've started a prescription strength vitamin d and take OTC iron, b12, magnesium, riboflavin, and coq10. Any thoughts or input? I am awaiting test results although my doc seems pretty convinced it's gluten related.

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kareng Grand Master
kareng
Posted

Have you had all the Celiac tests you will be getting? The tests are the most accurate if you are eating gluten.

Lkjoy930 Newbie
Lkjoy930
Posted
  • Author

Have you had all the Celiac tests you will be getting? The tests are the most accurate if you are eating gluten.

For some reason, my doctor has only ordered the blood test along with several other allergies

nvsmom Community Regular
nvsmom
Posted

Try to have as many celiac blood tests done as possible; sometimes the tests miss people so the more tests the better.

These are the most common celiac disease tests:

TTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

Total serum IgA (a control test)

AGA IgA and AGA IgG (older and less reliable tests)

It is recommended that one consumes gluten (1-2 slices of bread per day or equivalent) for 8-12 weeks prior to testing, so if you think more testing may be in your near future, do not top eating gluten yet.

Allergy testing will be focused on the IgE portion of your immune system.

I experienced a withdrawal when I went gluten-free. I am not sure if it was from cutting carbs (I doubt that) or from gluten... Regardless, I felt really poorly. Withdrawal hit me after about four days gluten-free and lasted a good ten days, I was feeling better by about three weeks gluten-free. Withdrawal usually seems to last a week or so but I do remember one poor soul who suffered through a month of it - yuck.

Withdrawal for me, consisted of a really serious migraine, fatigue, and a crankiness that put pms to shame. ;)

I hope you feel well soon!

Lkjoy930 Newbie
Lkjoy930
Posted
  • Author

Thank you so much :)

Galixie Contributor
Galixie
Posted

My really dumb question for today: What is withdrawal (as it relates to gluten)?

 

I was asymptomatic before going gluten free but, after 5 weeks, I developed GI issues (which haven't gone away). Could that be withdrawal or is that something totally different?

 

I don't know what is causing my GI issues. After 6 weeks I have started adding gluten back in (stupid, I know) in the hope that something will make me feel better. I'm at a loss for a better alternative. I didn't know withdrawal was even possible except on an emotional level (and boy was I also going through that!).

GF Lover Rising Star
GF Lover
Posted

In your other thread, it looks like you tested positive for celiac.  Even low positive is positive, did I miss understand that other thread.  I would suggest not eating gluten if your Celiac.  

 

Colleen

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Galixie Contributor
Galixie
Posted

At the time I was tested, my doctors were very adamant that I did not have celiac. I tested positive for gliadin IgA but negative on the rest of the bloodwork and biopsies. If I understand correctly, my results are more likely to indicate non celiac gluten sensitivity.

 

When the GI issues started I thought it was no big deal and that it would naturally run it's course and be over with. After two weeks, when that didn't happen, I started adding gluten back in to see if that would make any difference even though it theoretically shouldn't. That was four days ago. It hasn't gotten worse but, otherwise, there has been no change.

 

I've never heard of physical symptoms of gluten withdrawal before. I'd like to know more about it.

Lkjoy930 Newbie
Lkjoy930
Posted
  • Author

Well Ive read a lot online that people can experience headaches and fatigue along with some other symptoms when stopping gluten because the wheat actually contains a substance that acts like an opiate to the brain, kind of like quitting caffeine, the body needs time to adjust. So I guess Im curious to find out how other people felt after quitting gluten and how long their symptoms lasted.

Lkjoy930 Newbie
Lkjoy930
Posted
  • Author

I don't know what other thread the person was talking about? But I don't need a test to tell me I need to avoid gluten but I am waiting for some blood work results. I guess Im just curious about what kind of withdrawal symptoms everyone experienced and how long they lasted

Lkjoy930 Newbie
Lkjoy930
Posted
  • Author
In your other thread, it looks like you tested positive for celiac.  Even low positive is positive, did I miss understand that other thread.  I would suggest not eating gluten if your Celiac.  

 

Colleen[/quot

Which thread?

Lkjoy930 Newbie
Lkjoy930
Posted
  • Author

Have you had all the Celiac tests you will be getting? The tests are the most accurate if you are eating gluten.

Apparently yes because I refuse to eat gluten again haha

GeorgeDaniel Rookie
GeorgeDaniel
Posted

My withdrawal took a very long time. I would even tremble and feel like fainting the first few days. Hold on! It is worth it! 

kareng Grand Master
kareng
Posted
I don't know what other thread the person was talking about? But I don't need a test to tell me I need to avoid gluten but I am waiting for some blood work results. I guess Im just curious about what kind of withdrawal symptoms everyone experienced and how long they lasted
  

I think she was talking to the poster infront of her comment - Galaxie?

GF Lover Rising Star
GF Lover
Posted

  

 

I think she was talking to the poster infront of her comment - Galaxie?

 

 

Karen, Thank you.  Yes I was talking to Galaxie.  

 

Colleen

Lkjoy930 Newbie
Lkjoy930
Posted
  • Author

Ohh okay :)

Galixie Contributor
Galixie
Posted

I googled gluten withdrawal and found a couple of articles like this one:

Open Original Shared Link

 

and this one:

Open Original Shared Link

 

It sounds like withdrawal symptoms usually come on in the first few days and can last as long as six weeks. My GI issues must be something else since they didn't start until five weeks later.

Glutens gotta go Newbie
Glutens gotta go
Posted

Well Ive read a lot online that people can experience headaches and fatigue along with some other symptoms when stopping gluten because the wheat actually contains a substance that acts like an opiate to the brain, kind of like quitting caffeine, the body needs time to adjust. So I guess Im curious to find out how other people felt after quitting gluten and how long their symptoms lasted.

I have been recently diagnosed with Celiac and ive been gluten-free for around 4 weeks now.  i have had a headache Every single day.i have always gotten headaches quite frequently, but Nothing like this. my doctor put me on a ton of supplements which i have now stopped for 2 weeks. He suggests taht i start 1 back at a time, for 3 days to rule out headache causes.

So my queston is, is this just something i need to get used to. i am miserable! even more so than before my diagnosis. and nsaids (i take too many, i know) upset my stomach so bad now. Do i just suffer through the headache and take nothing? 

nvsmom Community Regular
nvsmom
Posted

I have been recently diagnosed with Celiac and ive been gluten-free for around 4 weeks now.  i have had a headache Every single day.i have always gotten headaches quite frequently, but Nothing like this. my doctor put me on a ton of supplements which i have now stopped for 2 weeks. He suggests taht i start 1 back at a time, for 3 days to rule out headache causes.

So my queston is, is this just something i need to get used to. i am miserable! even more so than before my diagnosis. and nsaids (i take too many, i know) upset my stomach so bad now. Do i just suffer through the headache and take nothing?

Give it a bit more time.... That headache is a doozy but I have never met anyone whose pain did not go. Hang in there, and drink extra fluids in the meantime.

  • 1 month later...
BLM44 Newbie
BLM44
Posted

Wow...withdrawal?  I didn't realize that many people experience this.  I am scheduled for an Endo on 7/9 and plan on going gluten free soon after.  All my labs came back positive ("really" positive).  So evenif I end up with a negative Endo biopsy, I'm pretty sure gluten-free is going to be recommended by my doctor.  

 

But if I get any more tired/fatigued while going through withdrawal, I may collapse into a coma.  Glad I've been perusing all the topics here.  Withdrawal wasn't even on my list of questions.  It is now.  :blink:

Steph1 Apprentice
Steph1
Posted

BLM- I did nap whenever possible during withdrawal.  I also had a constant headache for 3 weeks.  It is the worst just waking up with a headache every day.

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