Jump to content
  • 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):

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. - Russ H replied to coeliacmamma's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      New diagnosis

    2. - Ginarwebb replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      Test interpretations

    3. - coeliacmamma posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      New diagnosis

    4. - BelleDeJour replied to BelleDeJour's topic in Dermatitis Herpetiformis
      12

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

    5. - Jmartes71 commented on Scott Adams's article in Summer 2026 Issue
      5

      Court Ruling Raises Big Questions About "Gluten-Free" Food Safety in Retirement Communities (+Video)

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,119
    • Most Online (within 30 mins)
      10,442

    coeliacmamma
    Newest Member
    coeliacmamma
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      Hello, and welcome to the forum. Getting use to gluten-free eating is a struggle, but it is worth it. Your daughter should begin to feel much better and the fatigue will fade but it can take some time. I am sure you will get lots of suggestions from forum members - we have a few from the UK. I am a bit pushed for time just now but will come back later. Russ
    • Ginarwebb
      thank you so much for this information .. if I'm reading the results correctly I believe the range was  <15.0 Antibody not detected > or = 15.0 Antibody detected
    • coeliacmamma
      My 16 year old has just been diagnosed with coeliac, she loves food and is now struggling with the diet. She has a variety of different co editions and thos one just tops the list, she is a musical theatre student at college and loves what she does but fatigue gets in way alot of the time, are there any good amd tasty meals I can k make that will help?  Thanks for reading.
    • BelleDeJour
      Thank you so much @suek54 How are you doing today? I spoke too soon yesterday. Something (I can only think gluten-free sweets or a can of soft drink) set me off yesterday. Had a bath, applied some cream, still itching so applied some steroid and was awake until 3am. It's so frustrating. Always 2 steps forward, 1 step back. I am at work now and going to play it very much on the very safe side with food for the next few days.  My derm appointment is less than a week away. I will update on here because I do feel it important to help others. 
    • Scott Adams
      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
×
×
  • Create New...