Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Withdrawal Symptoms


Lkjoy930

Recommended Posts

Lkjoy930 Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

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

Lkjoy930 Newbie

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

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

Thank you so much :)

Galixie Contributor

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

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Galixie Contributor

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

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

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
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

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

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
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

  

 

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

Ohh okay :)

Galixie Contributor

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

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

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

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

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,699
    • Most Online (within 30 mins)
      7,748

    RelievedP
    Newest Member
    RelievedP
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      @Gigi2025  Thank you for your interesting post.  Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you  - they will eat normal wheat baguette there without issue, for example.  His theory was he thought it might be to do with the locally sourced wheat being different to our own in the UK? But I have to say my own experience has been quite different. I have been to France twice since my diagnosis, and have been quite ill due to what was then (pre-2019)  poor labelling and cross-contamination issues.  My TTG test following my last visit was elevated - 'proof of the pudding', as we say in the UK!  It was not just a case of eating something like, say, shellfish, that disagreed with me - gluten was clearly an issue. I've also been to Italy to visit family a couple of times since my diagnosis.  I did not want to take any chances so kept to my gluten free diet, but whilst there what I did notice is that coeliacs are very well catered for in Italy, and many brands with the same ingredients in the UK are clearly marked on the front of their packaging that they are 'senza glutine'.  In the UK, you would have to find that information in the small print - or it puts people off buying it, so I am told!  So it seems to me the Italians are very coeliac aware - in fact, all children are, I believe, screened for coeliac disease at the age of 6.  That must mean, I guess, that many Italian coeliacs are actively avoiding gluten because, presumably, if they don't, they will fall ill?        
    • deanna1ynne
      Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. Doc said we could biopsy in another six weeks because my daughter was actually way more upset than I anticipated about the idea of eating it for years before doing another biopsy. It doesn’t hurt her, but she’s afraid of how it may be hurting her in ways she can’t feel. She’s currently eating mini wheats for breakfast, a sandwich with lunch, and a side of pasta along with every dinner, so I’m hoping we’re meeting that 10g benchmark mentioned in that second article!
    • knitty kitty
      Have you tried a genetic test to look for Celiac genes?  No gluten challenge required.  
    • knitty kitty
      Hello, @ElisaAllergiesgluten, Have you tried going on a low histamine Paleo diet like the Autoimmune Protocol diet?  A low histamine AIP diet would help your body rid itself of the extra histamine it's making in response to allergies.  Are you Celiac as well?   Since we need more thiamine when we're stressed, adding Benfotiamine, a form of Thiamine Vitamin B 1, can help the body calm down it's release of histamine.  Benfotiamine improves Sailors' asthma.  
    • knitty kitty
      Don't skimp on the gluten daily while undergoing the gluten challenge!  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.