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

How Bad Can Withdrawl Get?

Applegirl

Recommended Posts

Applegirl Rookie
Applegirl
Posted

I seriously I hope I'm having withdrawl issues and not something else. I felt pretty good today (day 2) then starting tonight I started to feel a bit of anxiety. Thought maybe my sugar was low so I ate a banana had some fruit juice. Its just continued thru the night. Its now 1 am I can't sleep I'm having episodes of sweating, dizziness, muscle weakness and some shakiness. Skin is breaking out on face a little and I did have some itchiness earlier. I had a headache earlier in the night too which has eased some. This is all very frightening and I don't know if this is normal or if I should be worried! I'm drinking a lot of water hoping to flush stuff out but I didn't think I could feel this sick when I already felt bad to begin with. PLZ tell me someone went through this I'm really scared right now!

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

Celiac.com Sponsor (A8-M):


George Knighton Apprentice
George Knighton
Posted

Doesn't sound like you ate anything big today.

Applegirl Rookie
Applegirl
Posted
  • Author

Doesn't sound like you ate anything big today.

?huh? I ate quite a lot today including fish salad rice and vegetables for dinner and to be certain I wouldn't get low blood sugar before bed I had half a banana and a cup of juice

AVR1962 Collaborator
AVR1962
Posted

Did you get enough water? You really have to make sure of your water intake. Itchy is something I did not have in the detox phase but I did get it afterwards from eating tomatoes, cucumbers, green olives, raspberrries, zucchini.....which are all high salicylate foods. You can look that up easy enough and see if that could be a possible connection to the itching.

Are you also off dairy? People can have a reaction to the proteins (caesins) in milk and one of the symptoms is itching. Keep the diet balanced, eat lots of greens to put vitamins into your system. Limit your meat intake to 3-4 oz per serving.

Have you had a blood test to find out where your vits are? Insomnia can suggest that you may be vitamin deficient in some areas. Areas you need to watch are B12, magnesium, calcium, d, e, iron. Many of the symptoms listed could benefit from those vits. Make sure the vits are taken with food to help absorb. You need vit D to absorb calcium. You need vit c (greens, fruit) to help absorb iron.

If insomnia persists, and it might for awhile til you start feleing better, there is melitonex on the market that helps. It has magnesium and vit B3, take it with vit E just before bed and it should help.

Applegirl Rookie
Applegirl
Posted
  • Author

Thank u . I dunno if it's an itch as much as a skincrawling perhaps .. I've had no dairy today mostly fruits veggies and fish. I have been reading some medical articles about gluten withdrawal/detox and I'm stRying to believe this is what's happening. Oh and I had 5 bottles of water today. I do not get blood tests done till Tuesday when my docs office opens

AVR1962 Collaborator
AVR1962
Posted

Thank u . I dunno if it's an itch as much as a skincrawling perhaps .. I've had no dairy today mostly fruits veggies and fish. I have been reading some medical articles about gluten withdrawal/detox and I'm stRying to believe this is what's happening. Oh and I had 5 bottles of water today. I do not get blood tests done till Tuesday when my docs office opens

Skincrawling.....does it feel like you have something under the skin that might be moving or hairs on top of the skins that are really not there? That is from a lack of vit D, numbness/tingling you described could easily be a B12 deficiency. Are you also having Charlie Horses, restless leg, or muscle spasms? Potassium and magnesium can help these.

Fish? Hum? Do you eat alot of fish? Because you are having outbreak issues and have not been able to relate to anything yet you almost have to look at everything to figure out what is causing it. There is mercury in fish and not all people tolerate mercury well. Open Original Shared Link

5 bottles of water is good.

kwylee Apprentice
kwylee
Posted

I eliminated gluten first and then about a week later eliminated dairy and soy. Within a week of that I went through what you did, including one especially scary night when I awoke nauseous, dizzy to where I couldn't walk with severe anxiety and shaking. I've never really had something like that happen to me and I thought I was a goner. The worst of it lasted about 10 minutes and we were about to load me in the car to take me to the hospital when it started to subside so I held back and ultimately I was fine. I knew before I went to bed that my husband had forgotten and put butter in our dinner and I was obviously overly sensitive to the casein. I remember telling him, oh well, let's see what happens. Well, I saw!

I was really shaky in head and stomach for the next couple weeks but it was better every day.

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

Celiac.com Sponsor (A8-M):


Jenniferxgfx Contributor
Jenniferxgfx
Posted

My gluten withdrawals were scary. They were so uncomfortable I actually don't remember most of it. I remember the worst headache of my life, crawling skin, and anxiety/antsiness. All to an extreme... I literally (and melodramatically) felt like a heroin addict going through detox. It was hardcore.

Hang in there and hydrate! If it doesn't subside, it's time to see a doctor, but it may last a couple weeks. You should feel WAY better after!

Applegirl Rookie
Applegirl
Posted
  • Author

Thanks guys! Yes I seemed to have had "moments" last night on and off where I would get a slightly pounding heart, anxiety, sweats, crawling skin etc etc. then it would go away slightly then come back I seem to be okay today but a it tired, still shaky some (mostly in legs) but dizziness has gone away for now. I'm making sure to hydrate TONS and take walks to help move this along. I even noticed my skin has become oily (once again I think that is the toxins pushing out) but I have an all natural soap I am using to help with that. I feel like if I'm having these withdrawls then perhaps I'm on the right track. I see my doc tomorrow anyways for blood draw and vit check so I will bring all this up to him.

Applegirl Rookie
Applegirl
Posted
  • Author

My gluten withdrawals were scary. They were so uncomfortable I actually don't remember most of it. I remember the worst headache of my life, crawling skin, and anxiety/antsiness. All to an extreme... I literally (and melodramatically) felt like a heroin addict going through detox. It was hardcore.

Hang in there and hydrate! If it doesn't subside, it's time to see a doctor, but it may last a couple weeks. You should feel WAY better after!

wow thats insane, im reading it can have an opiate effect on ur brain and the withdraw can be like coming off heroine. I'm so glad ur okay

kwylee Apprentice
kwylee
Posted

Just be prepared that some GI's out there are dubious that you can experience withdrawal symptoms from removing gluten from your diet, I've had more than one doctor tell me there's no such thing. My own experience and what I read on this forum would be enough to convince me otherwise. Some people don't experience much of a detox at all, others have stronger symptoms. Maybe I had a rougher time because my symptoms were mostly neurological to begin with, unsure. In any event, the good news is that you only have to go through it once to get to the other side of gluten, so just hang in there.

Applegirl Rookie
Applegirl
Posted
  • Author

Just be prepared that some GI's out there are dubious that you can experience withdrawal symptoms from removing gluten from your diet, I've had more than one doctor tell me there's no such thing. My own experience and what I read on this forum would be enough to convince me otherwise. Some people don't experience much of a detox at all, others have stronger symptoms. Maybe I had a rougher time because my symptoms were mostly neurological to begin with, unsure. In any event, the good news is that you only have to go through it once to get to the other side of gluten, so just hang in there.

I have quite a bit of the neurological problems too but I feel as tho I'm possibly on the upturn however I'm not foolish enough to realize I can go through phases.. I've been very sick for 7 years so I know its gonna take more than 1 day to resolve itself. I find it surprising I'm having regular bowel movements since starting (I usually only went twice a week) . Thats a big change for me I think . I'm taking pictures of my tongue ( I have a previous post in the pre-diagnosis forum with pics of what it looks like) every day so I can check back on progress and see if some food aggrivates it more than others. You've all been so helpful! I really appreciate it

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank u . I dunno if it's an itch as much as a skincrawling perhaps .. I've had no dairy today mostly fruits veggies and fish. I have been reading some medical articles about gluten withdrawal/detox and I'm stRying to believe this is what's happening. Oh and I had 5 bottles of water today. I do not get blood tests done till Tuesday when my docs office opens

If you haven't been tested yet you really shouldn't be trying the diet until all your testing is finished or you risk a false negative and false negatives can be common even on a full gluten diet.

If you are only two days into the gluten free lifestyle then yes you could be going through withdrawl.

adab8ca Enthusiast
adab8ca
Posted

Hey

If you are going for more testing, you need to stay on gluten as sucky as that sounds. I'm sorry, I didn't have a chance to look at your history. June 2010 I went off gluten and by the end of July, my depression and anxiety were SO bad I thought I was going crazy. I felt like I had the WORST flu ever. I then realized I had to go BACK on gluten before my biopsy, so back I went and felt no worse...I think withdrawal is a real thing, I felt SO sick off gluten. Good news is that one year later, I am MUCH better and approaching normal-ish life again...

Applegirl Rookie
Applegirl
Posted
  • Author

oh sorry I should have clarified I'm having my blood drawn to check my vitamin levels and potassium level not for a celiac test! I had a blood test for that a while ago that came out neg. I was still going to doctors getting tested etc etc. My rheumatologist was at a loss for my constant state of inflammation (sores on tongue fingers etc) and asked if I had ever tried a macrobiotic diet or any sort of elimination diet. I said no so she said give the no gluten diet a try to see if I see any kind of changes. They said if not then I'll be sent to a GI but if so then he thinks he'll have a better grasp on what they're dealing with so this is my trial run. :blink:

gailc Newbie
gailc
Posted

Yes you can get withdrawl symptoms, a doc once told me you get addicted to things you eat and withdrawl can be nasty. My withdrawl from gluten was not as bad as withdrawl from beef and eggs many years ago. Because some of my symptoms went away with the first meal I had more motivation to stay gluten-free, also it made me very happy I found the answer. Little did I know symptoms kept disappearing for many weeks. Some I didn't even notice untils I heard other people had the symptoms like unexplained bruises, mine went away too.

It sounds like you had an anxiety attack, keep saying to yourself "this may make me better" lots of water to detox sounds good.

Have you also eliminated canola oil? My symptoms came back when some canola got into my food.

For myself I would like to know how to flush a bad thing out of my system.

lucia Enthusiast
lucia
Posted

I also felt like a heroin addict during withdrawal from gluten - it was INTENSE.

Btw ... I've noticed that my tongue turns black a few days after I accidentally ingest gluten. It seems to indicate that the toxins are passing out of my body. Perhaps you'll notice that as well.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.