Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Help Celiac.com:
    eNewsletter
    Donate

Day 2 Gluten Free - feeling super sick?!


JenDF

Recommended Posts

JenDF Newbie

Hi all, I'm new here and have been learning a lot from everyone.

I am in the early stages of being diagnosed, just got a positive antibody test this monday after feeling progressively terrible for the past 3 years. Some background, I have had very mild GI symptoms forever, nothing I ever bothered to see a Dr about. I wouldn't have ever thought celiac but I've been having progressively worse neurological symptoms (tingling fingers, dizzy spells, fatigue, brain fog) and my inflammation marker blood test came back super high so my Dr ran a bunch of tests thinking Lupus or something but now it looks like Celiac.

My Dr suggested I start a strict gluten free diet asap so I began yesterday morning. Felt fine all day, but now this morning I've woken up feeling truly terrible. I had very mild stomach problems before but now I'm having massive cramps and severe diarrhea. I'm incredibly dizzy and nauseated and feel like I need to lay down.

Is this normal? Should I stick with this? I'm kind of at a loss, I expected at least my stomach to feel a little better, not significantly worse!

Thanks for any advice!

 

 

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

Is your doctor going to order a biopsy? If so you need to stay on gluten until that is done.

But to answer your question, yes it is normal to feel worse before feeling better. Gluten withdrawal is a real physical thing. Headaches, dizziness, raging hunger, mood swings, and a general uneasy feeling almost as if you are expecting something really bad to happen. That usually lasts  few weeks.

It took a long time to do the damage so it's going to take a long time to heal. You will find yourself going back and forth between feeling better and then feeling worse again for a while. It's best to stick to plain, simple whole foods at first. Cook your veggies so they are easier to digest and try to avoid gluten-free substitutes for a while. The more ingredients in a food, the better the chance of something making you feel sick, even if it IS gluten-free.

I was wondering if you could post which tests you had, the results and the ranges, so some of the folks here who are good at interpreting the tests could chime in.

And by the way, welcome to the forum! :) Go check out the Newbie 101 thread pinned to the top of the coping section. You'll learn a lot about the diet.

Link to comment
Share on other sites
JenDF Newbie

Thank you bartfull! I'm at least glad to know this is normal. Also glad you posted hunger, I'm not a huge eater and just ate half a chicken... :)

I don't have the lab results yet. I see my Dr in two days, she just called to discuss my tests and said that my antibody test was positive but didn't give me hard numbers. I do know my C-reactive protein was 11.9. I'll post all my results as soon as she gives them to me on Friday.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Help Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to djmu's topic in Related Issues & Disorders
      5

      Peripheral Neuropathy

    2. - Tlbaked13 replied to djmu's topic in Related Issues & Disorders
      5

      Peripheral Neuropathy

    3. - trents replied to djmu's topic in Related Issues & Disorders
      5

      Peripheral Neuropathy

    4. - shadycharacter replied to Linedancegal's topic in Introduce Yourself / Share Stuff
      5

      25 year biopsy confirmed/ate pizza with no ill effects?

    5. - Tlbaked13 replied to djmu's topic in Related Issues & Disorders
      5

      Peripheral Neuropathy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,467
    • Most Online (within 30 mins)
      7,748

    MorticiaCat
    Newest Member
    MorticiaCat
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi Tibaked If you are diagnosed with coeliac disease, you may find that all sorts of symptoms will be alleviated by a gluten free diet.  GERD and lactose intolerance can be greatly reduced if not eliminated once the gluten-free diet is adopted.  However, if you want to be tested and officially diagnosed you will need to have been consuming gluten until your blood test/endoscopy.   Although I don't have the same sensations you describe before my diagnosis, I frequently woke up with numb arms and numb fingers.  I could feel pins and needles in my extremities.  Weirdest of all, the sensation that drops of cold water, like rain, were falling on me, even though the sun was shining or I was indoors. It took time but things got much better after after following a gluten free diet for a while. Of course,  some neuropathy is caused by malnutrition, common in coeliacs when first diagnosed,  so make sure the doctor checks your vitamin (particularly B12) and iron levels. Cristiana
    • Tlbaked13
      Not officially diagnosed yet I goto the doctor a week from today but I'm 110% that will be the diagnosis I honestly can't believe my doctors/health care team hasn't put it together before I mean I'm basically the live and walking definition straight from the book haha I don't think I've ever been so sure on anything before I'm just reqly concerned for this diet I will be living on or diets I guess due to type 1 diabetes, gastroparesis, gerd, celiac disease, and lactose intolerance...what is left? A sand salad with a side of rain water?!? I definitely see a tough future
    • trents
      Welcome to the forum, @Tlbaked13! Have you been officially diagnosed with celiac disease? It is well-known that celiac disease can result in peripheral neuropathy but so can diabetes. 
    • shadycharacter
      Lactic acid bacteria start to develop as soon as flour and water are mixed, so I assumed that in a yeast dough with long proofing time there could be some effect of fermentation and gluten break down. 
    • Tlbaked13
      I am COMPLETELY new to this celiac disease however I have had the same feelings and then some with my feet for years now and been diagnosed with peripheral neuropathy myself but they blamed and attempted to treat due from my type 1 diabetes and none of the treatment has helped at all so far so possible from celiac disease? Just sharing MY thoughts on this I've had zero confirmation 
×
×
  • Create New...