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
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.

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

Celiac.com Sponsor (A8-M):


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

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

Celiac.com Sponsor (A8-M):


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.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.