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

Newly Diagnosed - Is This Normal?

Lisa8439

Recommended Posts

Lisa8439 Newbie
Lisa8439
Posted

Hi everyone,

I was just dx with celiac on Friday of last week. After taking the weekend to do some research, I took the plunge to the gluten-free way of life today.

I feel a lot worse than I did when I wasn't gluten-free :blink:

Around lunchtime, I got a terrible headache, almost borderline migrane. Upset stomach, nausea, diarreah, and I can hardly eat anything now. I know I didn't eat anything with gluten in it today, I was very careful to plan out my meals today and double check everything.

Is there such a thing as die off when you go gluten-free? Is this just my body trying to plead with me to *please* just eat some cupcakes? :) Or is this not really normal when you are going off of the gluten? I guess I expected to feel a little better... or at least not have a pounding headache and diarreah. All my doc told me was that I would feel very tired and worn out for a month or so... but she didn't say anything about feeling so yucky. It's so bad I am even questioning whether or not I can do this (I know I have to... but when you feel worse than you did in the first place, it's hard to justify why you can't just go ahead and have the foods you are giving up)

Thanks to anyone who answers... I am still very new at this so I am doing a lot of poking around on the message boards for tips!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted
Hi everyone,

I was just dx with celiac on Friday of last week. After taking the weekend to do some research, I took the plunge to the gluten-free way of life today.

I feel a lot worse than I did when I wasn't gluten-free :blink:

Around lunchtime, I got a terrible headache, almost borderline migrane. Upset stomach, nausea, diarreah, and I can hardly eat anything now. I know I didn't eat anything with gluten in it today, I was very careful to plan out my meals today and double check everything.

Is there such a thing as die off when you go gluten-free? Is this just my body trying to plead with me to *please* just eat some cupcakes? :) Or is this not really normal when you are going off of the gluten? I guess I expected to feel a little better... or at least not have a pounding headache and diarreah. All my doc told me was that I would feel very tired and worn out for a month or so... but she didn't say anything about feeling so yucky. It's so bad I am even questioning whether or not I can do this (I know I have to... but when you feel worse than you did in the first place, it's hard to justify why you can't just go ahead and have the foods you are giving up)

Thanks to anyone who answers... I am still very new at this so I am doing a lot of poking around on the message boards for tips!

Hi and welcome to the boards. One of the first and most important things you need to know is that gluten reactions are often delayed reactions. So even though you didn't eat gluten today your body will still be clearing out the gluten you had last week. In addition there also is the addictive nature of gluten and you may also be going through withdrawl. This will end. During these first few weeks you may also want to avoid dairy, many of us are sensitive to it until we heal a bit. It is best to try and eat as simply as possible at first. Try to go with fruit, veggies, meats (unless your a vegetarian), rice, pototoes. The folks on the board are a great resource and make sure you read lots of posts so that you can learn what toiletries and shampoos and such are safe. Again welcome to the board and hang in there things will get better.

jerseyangel Proficient
jerseyangel
Posted

Hi Lisa, I wanted to welcome you to the board, and I would agree with Ravenwood--it sounds like you are going through healing/withdrawl. It's not a fun thing to go through, but it will end (hopefully soon) and you will begin to heal and feel better. :)

CarlaB Enthusiast
CarlaB
Posted

I felt like I had the flu for the first couple days off gluten. It was really bad. After a couple days, I had what your doc described. It will get better. Hang in there.

TCA Contributor
TCA
Posted

don't expect results for a few weeks. It was 3 weeks for my son for the D to even stop. We've tried to start a new thread to help. Open Original Shared Link

Hope you're feeling better soon.

Lisa8439 Newbie
Lisa8439
Posted
  • Author

Thanks everyone for the replies...

I figured that it was just my body trying to heal, I guess it's just tough mentally starting out when you are still feeling so bad, and yet eating the way you should be.

I will hop on over to the other thread and take a look there too!

:)

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. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse. But it is important not to stop the treatment. Regarding your problems with anxiety, again that is another symptom of a B12 deficiency. I didn't know...
    2. Jmartes71
      - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do...
    3. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, ...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're...
    5. Scott Adams
      - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back u...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748
    GR82BNTX
    Newest Member
    GR82BNTX
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      still struggling with cravings

      By Scott Adams · Posted

      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Oh my goodness medication causing pain !!!!

      By Scott Adams · Posted

      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Knowing what to do when feeling unwell.

      By Scott Adams · Posted

      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, 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.