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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,827
    • Most Online (within 30 mins)
      7,748
    Rebecca Hurst
    Newest Member
    Rebecca Hurst
    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

    • Colleen H
      Stomach burning and neuropathy

      By Colleen H · Posted

      Hello  I'm not sure what to think . Seems no matter what I do I get sick. I had some yogurt with only 2 grams of sugar and is labeled gluten free ...the strawberry version seemed to really set me off My jaw is burning as well as my stomach and my feet.  Horrible pain..plus acid reflux and nausea... sensitivity to touch pain. ..yikes !! I don't know if it's from the lactose in the yogurt or if I'm getting an ulcer  This condition can make you question yourself quite a bit.  Then if you are not sure the anxiety comes 😞 Does any of these symptoms sound familiar to anyone? The neuropathy is quite intense.  What do you eat or drink after this happens  Open to suggestions  Thank you 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Of course my son is on a 100% gluten free diet.  I wish his symptoms were not debilitating as there are right now.  He cannot work, even when a miniscule of cross contamination occurs.  It's not just GI distress, but intense fatigue, brain fog, depression, anxiety, insomnia, etc.  It's literally neurological inflammation.  Not to be taken lightly here.  We have sought out many other possible ways to cope during this window of time (8 months!!!!)  without success.   AN-PEP does not help and seems like studies on this are not well researched.  So, we are trying this out because research shows some promising results.  And, all participants showed no cravings afterwards, no signs of addiction.  The patch is different than the oral route such as smoking, vaping, gum, pouch, etc. 
    • Scott Adams
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By Scott Adams · Posted

      Have you tried AN-PEP enzymes, for example, GlutenX (who is a sponsor here)? A lot of research has shown that it can break down small amounts of gluten in the stomach, before it reaches the intestines. It might be a better approach than risking nicotine addiction, and the questionable research around this. I also hope that he’s trying to be 100% Gluten-Free.
    • Me,Sue
      Nausea

      By Me,Sue · Posted

      Hi all  I was diagnosed Coeliac a few years ago and follow a gluten free diet. The list of foods that I can eat without a problem grows shorter on a weekly basis. [I also have diabetes and asthma also].  BUT the reason I am posting this is because I seem to struggle with nausea quite a lot, which is really quite debilitating, and I was wondering if others suffer from nausea, even if following a gluten free diet. 
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      @fatjacksonthecat I have been doing some digging about the topic of nicotine and celiac.  I came across many studies that showed that the nicotine patch helped many with long covid and chronic fatigue syndrome.  I have a son who was diagnosed with celiac and his symptoms are severe when he is glutened.  He shows a lot of neurological inflammation and suffered with fatigue, brain fog, depression, anxiety and insomnia. There have been studies revealing that nicotine smoke actually masking celiac symptoms.  I also read that microdosing with a nictoine patch prevents one from addiction.  We are currently trying this out and so far it has lifted the brain fog and helped with anxiety and mood.  One of the studies I have read showed that it's not so much the dose, but the length of time a person is on the patch that showed improvements.  Many showed significant improvement as early as week 3 and continued through week 12.  We are taking 3 day breaks in between to make sure we don't down regulate the nicotine receptors.   How have things been for you?  Are you still chewing nicotine gum?  Perhaps, try the patch?  And how long did it take to ease up on your symptoms when glutened?
×
×
  • 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.