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

Gluten Withdrawal?

sweethome

By sweethome
in Coping with Celiac Disease

Recommended Posts

sweethome Newbie
sweethome
Posted

Hi everyone, I'm pretty new to this. I was diagnosed with coeliac disease (blood test and biopsy) just over a month ago and tomorrow I will have been gluten free for 4 weeks.

I'm having some trouble though. Although I do feel some improvement in my gastro symptoms (definitely less bloating and discomfort) I am really struggling with fatigue, dizziness/lightheadedness, and tired, aching muscles. It almost feels like I have a virus or the flu, although I don't think I do as no cold symptoms or sore throat or anything.

I felt fine the first fortnight of being gluten free, but weeks 2-4 have been really hard. Could this be from removing gluten from my diet. So far I haven't been eating any 'substitute' items, e.g. I've not had any gluten free bread, etc. I've just been eating things that are naturally gluten free.

I didn't expect to feel worse rather than better and I'm just hoping this is a phase. Anyone experienced anything similar? The dizziness/lightheadedness in particular is becoming really upsetting to me. :-(

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Healing from any illness or damage takes extra sleep and calories.  Are you eating enough?  Sometimes, people make a drastic change when removing gluten from their  diet and are missing important nutrients or fiber.  

nvsmom Community Regular
nvsmom
Posted

I had this.  Big headache and big faigue... and big crankiness.  LOL It lasted about a week or so.  Hang in there.

I also experienced increased autoimmune flare-ups for a while.  I would feel flui-ish, get achey muscles, increased hair loss, mouth sores, and joint pain.  That settled down after about 6 months (for me).

I agree with Kareng that you should also make sure your calories aen't going to low.  Make sure you are replacing gluten-free items with other good foods. Whole foods if you can manage it.

Best wishes. I hope you feel better soon.

squirmingitch Veteran
squirmingitch
Posted

I had big time gluten withdrawal! Some people get off lucky & don't go through it but plenty of us get to experience it. Looks like you're one of us who doesn't get off lightly. The good news is that it usually doesn't last more than a month -- less for most people. Mine lasted about 2 months. Everyone is different.

Hang in there. 

notme Experienced
notme
Posted

yeah, withdrawal is a thing - some people get it, some don't.  it feels like the flu (mine lasted 2 weeks) so, i just treated it as such:  nap when you can,(many, many naps!)  lots of fluids, etc, i think i took some tylenol for head/body aches.  it should go away soon, or your days should start getting progressively better.  hang in there :)

sweethome Newbie
sweethome
Posted
  • Author

Thank you all so much for your input. My mum thinks I may not be eating enough now that I've eliminated gluten. I've got a 3 year old so busy most of the day working and running around after him, so that may not be helping. I'm not getting much time to just rest even though I'm feeling off. I'm hopeful this will pass soon but it's reassuring to hear that others went through similar in the early weeks.

I've been so so tempted to eat some bread to see if I miraculously feel better, but know that would just be stupid and I've got to keep going. I was walking upstairs today and my knees just felt like I was 100 years old (I'm 33). Ah well, onwards...! :-) Thanks again!

squirmingitch Veteran
squirmingitch
Posted

Just keep going forward girl, keep going forward. This will end. But don't be surprised if you get another withdrawal symptom which is stark raving starving hungry, hungry, hungry 24 hours a day. It was part of the withdrawal for me as well as many others. If that happens just go with the flow & eat your fool head off. That too will pass. LOL!

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

Celiac.com Sponsor (A8-M):


nvsmom Community Regular
nvsmom
Posted

Hang in there. It will be getting better soon.

@squirmingitch I had that crazy hunger too. I ate so much, but I remember losing weight at the same time.  I enjoyed that!  LOL

BoJo Newbie
BoJo
Posted

Week four was the worst for me. I was grouchy and mean for several days. I was not fit to be around. That was years ago and I still shudder when I think of how I acted. 

sweethome Newbie
sweethome
Posted
  • Author

Well I think I can safely say it must have been withdrawal. I'm nearly 6 weeks in now and feeling okay. The dizziness lasted about a week, but I didn't get sick or come down with a bug or cold or anything, so I'm positive it was down to my changing diet. I have started to eat a little more as well so maybe that it also helping.

I'm noticing too that I feel a lot less bloated. If I have a big meal and feel really full, it's a strangely different - more comfortable - feeling of being full. It's hard to describe I guess. I *am* noticing that I'm REALLY hungry a lot of the time now!

It's amazing how much cutting something out of your diet can have so much effect...

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. trents
      - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases...
    2. McKinleyWY
      - McKinleyWY posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Accuracy of testing concerns

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast. All my life I have avoided bread and most products containing enriched flour as they contain yeast (when making the man made vitamins to add back in to the flour). Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat...
    3. trents
      - trents replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you...
    4. Peace lily
      - Peace lily replied to AristotlesCat's topic in Super Sensitive People
      118

      Gluten Free Coffee

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
    5. Teaganwhowantsanexpltion
      - Teaganwhowantsanexpltion replied to Teaganwhowantsanexpltion's topic in Introduce Yourself / Share Stuff
      4

      A little about me and my celiac disease

      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,238
    • Most Online (within 30 mins)
      7,748
    tcpb
    Newest Member
    tcpb
    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

    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
    • Teaganwhowantsanexpltion
      A little about me and my celiac disease

      By Teaganwhowantsanexpltion · Posted

      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore 
×
×
  • 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.