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 Wars


ScionTC

Recommended Posts

ScionTC Newbie

First off, its really nice to meet all of you.

I was diagnosed around the middle of October '09. So far, I've been on the gluten-free diet 3 different times, and failed twice, due to accidents. My last accident was, of course, over the holidays, probably December 26th or 27th. This time I'm determined to succeed, and I've been gluten-free ever since, but the withdrawal symptoms are destroying me! In the last week, I've been having a lot of head aches, brain fog, difficulty concentrating, some eye and temple pressure (almost a passing out sensation), some assorted flu-like symptoms, insomnia, and a few day bout with the big D. Minus the D and insomnia, these are all new symptoms for me (longest I've been gluten-free so far!) While still on gluten, I mainly suffered with chills/shakes, severe stomach cramps, fatigue, and constipation.

I have also cut out soy and lactose to be on the safe side, but I know for a fact lactose cramps me up really badly. My questions are: 1.) Are these symptoms at all typical of withdrawal? 2.) How long have some of you experienced withdrawals? College just started back up (thankfully I commute, makes eating easier), but these symptoms are really destroying my ability to focus in class and on homework/studying, which is really the last thing I need at the beginning of a fresh semester. I welcome everyone's input!


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

First off, its really nice to meet all of you.

I was diagnosed around the middle of October '09. So far, I've been on the gluten-free diet 3 different times, and failed twice, due to accidents. My last accident was, of course, over the holidays, probably December 26th or 27th. This time I'm determined to succeed, and I've been gluten-free ever since, but the withdrawal symptoms are destroying me! In the last week, I've been having a lot of head aches, brain fog, difficulty concentrating, some eye and temple pressure (almost a passing out sensation), some assorted flu-like symptoms, insomnia, and a few day bout with the big D. Minus the D and insomnia, these are all new symptoms for me (longest I've been gluten-free so far!) While still on gluten, I mainly suffered with chills/shakes, severe stomach cramps, fatigue, and constipation.

I have also cut out soy and lactose to be on the safe side, but I know for a fact lactose cramps me up really badly. My questions are: 1.) Are these symptoms at all typical of withdrawal? 2.) How long have some of you experienced withdrawals? College just started back up (thankfully I commute, makes eating easier), but these symptoms are really destroying my ability to focus in class and on homework/studying, which is really the last thing I need at the beginning of a fresh semester. I welcome everyone's input!

I could be wrong but the symptoms I bolded are the symptoms I get from a glutening. Is there any chance you may have been glutened? Gluten can be sneaky, are you eating many processed foods? Have you eliminated gluten from your toiletries and checked all your meds? Are you doing baking with gluten flours for others? Have you replaced your toaster, scratched pans, wooden cutting boards and spoons etc.?

I did go through withdrawl but it was in the week or so after I quit gluten and the symptoms were increased anxiety, depression and irritability. Everyone is different but the withdrawl does not usually include D, that is more commonly caused by accidental injestion.

bluebonnet Explorer

i am 12 days into gluten free while still waiting for labs to come back and i am feeling some of the symptoms you are. yesterday seemed particularly difficult and i thought maybe i accidentally ate gluten because i was feeling anxious and a little irritable the whole day. i got bloated and my joints were hurting pretty bad too. i still haven't slept good so i'm hoping that continuing on will benefit me there soon!!! no doubt i'm feeling better but i too am curious if this is "withdrawl" or accidental glutening. sorry i can't offer advice but can tell you, you aren't alone! hope you get to feeling better!

ScionTC Newbie

Thanks for the replies. The only non-whole food I'm consuming is Heinz Ketchup (I'm the only user of it, no cross contamination). Everything else is fresh fruits, veggies, lentils and unprocessed meats. I do take Centrum Liquid Multi-vitamin, which is supposed to be gluten-free, and take regular tums for calcium. I drink nothing but water, use a variety of Tom's toothpaste, use dial hand soap and prell shampoo. I was using listerine, but for some reason after using it I was getting shortness of breath, so I've been away from that for two days now.

mindwiped Rookie

Thanks for the replies. The only non-whole food I'm consuming is Heinz Ketchup (I'm the only user of it, no cross contamination). Everything else is fresh fruits, veggies, lentils and unprocessed meats. I do take Centrum Liquid Multi-vitamin, which is supposed to be gluten-free, and take regular tums for calcium. I drink nothing but water, use a variety of Tom's toothpaste, use dial hand soap and prell shampoo. I was using listerine, but for some reason after using it I was getting shortness of breath, so I've been away from that for two days now.

Check your Tums...there was one type we'd had in the house that had wheat in it. I hope it's not the type you're taking.

ScionTC Newbie

Check your Tums...there was one type we'd had in the house that had wheat in it. I hope it's not the type you're taking.

Ah, you probably mean the smoothie or whatever type. Nah I don't take those, and according to their website, the rest of their products are gluten-free.

sandsurfgirl Collaborator

You might just have a stomache virus. Not everything is due to celiac. The flu symptoms, headache, achiness and D are pretty much standard for a stomache virus. If you are sure you haven't had gluten, then I would just keep hydrated and you're probably contagious if you are feverish so stay home a few days.


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



Celiac.com Sponsor (A8-M):



ScionTC Newbie

You might just have a stomache virus. Not everything is due to celiac. The flu symptoms, headache, achiness and D are pretty much standard for a stomache virus. If you are sure you haven't had gluten, then I would just keep hydrated and you're probably contagious if you are feverish so stay home a few days.

I really hope you're right! Thanks for the support everyone :)

sandsurfgirl Collaborator

I really hope you're right! Thanks for the support everyone :)

One of the most frustrating things about this disease for me is that the symptoms mimic so many other things. The attacks that I had prediagnosis that sent me to the E.R. always seemed like a heart attack. Scary!

My kids have had so many stomache viruses over the years I feel like a stomache virus expert. :) You sound like you are so careful and strict so it just doesn't make sense that you got glutened.

  • 3 weeks later...
muchmalignedminx Newbie

Hi...I was diagnosed last friday the 5th feb 2010. I started being gluten free straight after my visit to the doctor (biopsy positive for villious atrophy) From late evening I started with a general feeling of being 'not quite right', increased thirst, feeling as if I couldnt think straight, found it difficult to find the right word when in a conversation...became withdrawn, craved something sweet to eat, tearful and irrational. These symptoms increased over the weekend. I devoloped abdo pains and couldnt sleep. Sunday night I'd had enough and went to my local a & e but was sent home when I explained about my diagnosis and symptoms. Told it would get worse before it got better and to hang in there! not helpful really. Its tuesday now and I feel a little more clear headed and most of the other symptoms have faded away. Still very tired and pale but Im feeling confident it will get better over time. Knowledge is power really I guess and you've done the right thing by looking at forums like this...it does make a difference. Fingers crossed you feel better soon.

Raleigh333 Newbie

Hi...I was diagnosed last friday the 5th feb 2010. I started being gluten free straight after my visit to the doctor (biopsy positive for villious atrophy) From late evening I started with a general feeling of being 'not quite right', increased thirst, feeling as if I couldnt think straight, found it difficult to find the right word when in a conversation...became withdrawn, craved something sweet to eat, tearful and irrational. These symptoms increased over the weekend. I devoloped abdo pains and couldnt sleep. Sunday night I'd had enough and went to my local a & e but was sent home when I explained about my diagnosis and symptoms. Told it would get worse before it got better and to hang in there! not helpful really. Its tuesday now and I feel a little more clear headed and most of the other symptoms have faded away. Still very tired and pale but Im feeling confident it will get better over time. Knowledge is power really I guess and you've done the right thing by looking at forums like this...it does make a difference. Fingers crossed you feel better soon.

Hello. I was also officially diagnosed via endoscopy Feb 5 2010. Started gluten free Jan 13 2010 after the doc's office calling about the positive serology. It's rough but I was mentally prepared since I thought this was a possibility for the past few years. Wish I would've been more persistent in following up. Also not sleeping well at all this week...slight migraines by the end of the school day, dizzy, and some heartburn which has steadily increased over the past year. Irritability i'm blaming on the stress this is bringing on with explaining this to coworkers and shopping and cooking for myself. I don't think symptoms are going to completely go away until the intestines can heal and the antibodies get out of our system...but I don't know for sure. Bloating/loose stools etc have cleared up...now i see what normal is again...couldn't tell with gradual changes over the years. These forums are comforting! Good luck

Archived

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

  • 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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.