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:
    Support Our Content
    eNewsletter
    Donate

Newly diagnosed and feel awful

Aimee G
 Share

Recommended Posts

Aimee G Newbie
Aimee G
Posted

I hope someone can relate and help me. I was diagnosed with celiac a week ago and went gluten free last Monday (1 week today). My daughter was diagnosed 4 years ago so we know the drill really well and our house is entirely gluten free. But since going gluten free I am feeling really terrible. I’ve been extremely dizzy, feel hungry all the time but then feel nauseous if I try to eat, I’m extremely bloated and gaining weight even with limited eating, my legs ache, I feel jittery, and get lightheaded if I try to get up and do anything. I’m terrified about what is going on with me. My doctor just keeps telling me to stay hydrated. Has anyone felt this way after going gluten free? Is there anything I can do to help! I’ve been out of work for a week now barely able to get off the couch. Help, please!

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

Celiac.com Sponsor (A8-M):


Fenrir Community Regular
Fenrir
Posted

A lot of people actually have worse symptoms for the first two weeks to a month after going gluten-free. Part of it, the GI stuff, is a combination of healing and also change in diet goofs up your GI tract. 

You may have anxiety too, that can cause all of those symptoms. You can get dizzy from a low blood sugar as well if you're not eating.

 

cyclinglady Grand Master
cyclinglady
Posted

Many, many members report withdrawal symptoms that last a week or two.  Hang in there!  

P.S.  You can use the forum search box and enter “withdrawal” and I bet you get lots of hits and can verify what I said.  

Aimee G Newbie
Aimee G
Posted
  • Author
1 hour ago, Fenrir said:

A lot of people actually have worse symptoms for the first two weeks to a month after going gluten-free. Part of it, the GI stuff, is a combination of healing and also change in diet goofs up your GI tract. 

You may have anxiety too, that can cause all of those symptoms. You can get dizzy from a low blood sugar as well if you're not eating.

 

Thank you!

48 minutes ago, cyclinglady said:

Many, many members report withdrawal symptoms that last a week or two.  Hang in there!  

P.S.  You can use the forum search box and enter “withdrawal” and I bet you get lots of hits and can verify what I said.  

Thank you! Seems like my symptoms are consistent of withdrawal. They are just so severe. I really wasn’t expecting this at all since my daughter seemed fine when she went gluten free (although she was 3 years old, I’m 36.)

Felix Nuts Tomcat Apprentice
Felix Nuts Tomcat
Posted

I felt just awful for two weeks after going gluten-free.  I just laid in bed feeling bloated and with pain under my ribs.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,092
    • Most Online (within 30 mins)
      7,748
    Buy Diazepam Online Truste
    Newest Member
    Buy Diazepam Online Truste
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Options - 7 year old boy - Helicobacter pylori and serology

      By cristiana · Posted

      @Kathleen JJ  I am based in the UK and the vast majority of sweets produced by Haribo are in fact gluten free, and I think they are the principal manufacturers of gummy bears.    The following link is to a website for UK based consumers but even post-Brexit, we are still importing and exporting a vast array of mainland European-manufactured goods, so chances are some of the products mentioned in the link are from the same factory.  So what your son eats would likely be the same product that I eat when it comes to eating sweets. https://libereat.com/2021/07/gluten-free-sweets/#:~:text=Haribo Gold Bears are gluten,Starmix   But always check the ingredients lists first.  When doing this, what you need to avoid (usually printed in bold in the ingredient list) are: Wheat, barley and rye. These grains all naturally contain gluten. Coeliacs must also avoid products which also state, "May contain traces of wheat, barley and rye" or products where the statement occurs: "Made in a factory which also handles wheat, barley and rye"    However, one other thing to think about:  oats.  In the UK, we do produce quite a few cakes and some candy which contains oats.    Oats do not naturally contain gluten, but as the crops are often grown alongside wheat, barley and rye, or processed in the same plants, cross-contamination can occur and they pick up gluten 'en route'.   The good news is that some food producers now grow oats away from these crops, and process them in oat dedicated plants, so you end up with a product called "pure oats" which are suitable for the majority of coeliacs (a minority react to avenin, the oat protein, in the same way they would to gluten, but I won't go into that here - just making you aware in case down the line you think it could be a problem).   So increasingly, in the UK at least, manufacturers are now printing oats in bold.   In candy production, you might find vegan chocolate which contains oat milk, hence I mention it here.  Unless such a candy bar stated that it was suitable for coeliacs,  your son would have to avoid it.   Incidentally, I think the idea of having a party after your holiday is a very wonderful, positive start to your son's gluten-free diet journey.  I was symptomatic by the time I was finally diagnosed with Coeliac Disease and was quite keen to start the diet straight away.  But just a few days after my endoscopy I was due to visit Normandy.  My consultant said to me, "Don't bother about taking up the diet until you get back".   I did try to start it in France but back then French catering establishments didn't seem to appreciate coeliac customers (something my gastroenterologist seemed to know something about!) so I was so glad he told me not to worry until I came home!
    • Kathleen JJ
      Options - 7 year old boy - Helicobacter pylori and serology

      By Kathleen JJ · Posted

      @cristiana Do you have any suggestions for the gummy bear type of candy? Because that is what is getting passed around. Someone told me "you will have to read all labels thoroughly from now on" but to be honest: I don't know what I'm looking for that should or should not be there? And is the notion "gluten free" trustable? And what about "may contain residual gluten"? Is that safe?
    • Kathleen JJ
      Options - 7 year old boy - Helicobacter pylori and serology

      By Kathleen JJ · Posted

      @trents The first thought indeed I had was 'thank god it's not cancer' and of course, there are many, many, many worse diagnoses to get. But this doesn't mean it doesn't come as a shock. I read a lot of the time 'the most common symptoms are...' and then all the things he doesn't have, but never do I find a list of less common symptoms (bar @Wheatwackeds examples - and also non of these are present). I get that severe pains can be a symptom, though the fact that they were omnipresent for 10 days (the exact time his viral values were up) and then 6 weeks later 1 episode also when the family was going through a stomach bug, and since then (nor ever before) none, this logically seems more related to a virus then a symptom of Coeliac, as I'd think this would have to be more present on a regular basis? He always has loved gluten-containing food and at that time was rather having less of it (due to the bug and feeling a little under the weather so eating more yoghurt and the likes then cookies) then more of it. It just doesn't sound all that logical. That being said, I comprehend AND accept that things can not always be logical.   I am trying to understand what you are saying about the tolerance - so as long as he eats gluten, he will have some tolerance to it, but when he stops, and say accidentally ingests something, he will react more as the tolerance is lower? It sounds so illogical (hmm, I see a pattern with myself: really looking for logic in a very illogical condition). And how do you interpret the values very 6 months as you maybe don't know there has been an accidental intake?  Do the values ever go down to zero or is it a question of getting them mainly lower and can they never go down to normal rates?   Normally results of his biopsy are coming in on monday, a little chance they come in today. I've been checking my mail every 10 seconds 🤦🏻‍♀️, this will not be a productive working day I fear 🙄. Then we know the values, but we only have an appointment with the specialized pediatrician and dietitian on December 6d (which in Belgium is a children's holiday comparable to Santa Clause). So we'll get the full "introduction" to the disorder and approach then.   I did talk to the pediatrician and gastrointestinal doctor who did the gastroscopy asking their advice about a plan I was having: to wait to start the diet after the holiday season, we will be abroad in a hotel and to start there in this very new world feels quite stressful for us, but even worse: it will start this journey in a lot of negativity. So our plan is to have a "yummy" party after we return from our trip, during Christmas holidays, inviting some of his friends and buying and making a vast array of gluten free goodies and having them sample and score it. This way it feels like a festive thing AND we can immediately find some things (hopefully) he genuinely like.   Both doctors agreed with this approach as this was truly an accidental find and hadn't we tested his blood 2 weeks ago chances were we'd only have found out in a year or 2 so those extra few weeks will not make the difference.   So now I'm gathering information, talking to people to know where there's good stuff...     But what keeps on being quite ununderstandable to me (I hope this will get explained on December 6th) is how it works. So it's auto-immune, meaning gluten trigger an immune response. Is this a black and white thing? Does 1 grain of wheat trigger the same response as a full bowl of spaghetti? And I mean this on a bowel and organs level, not on a symptoms level, as I gather (is this correct?) that not having any symptoms does not mean that his bowel doesn't get attacked?   I know it all could be worse, I truly do, but to be honest, this is the 4th "anvil falling on my head out of a clear blue sky" diagnosis that I got for one of my most loved people. First my mother was diagnosed with presenile dementia without anyone in the family having it. Then my unborn daughter turned out to have a chromosomal defect that made that she could only live inside of me and died when she was born, then my sister turned out to have (a tested non genetic 🤯) form of presenile dementia as well, with me being her only caretaker as my mother passed away a few years ago and she has no family of her own. And now this. And this is absolutely not only the least of this row but of course not even in the same ball park. But for my resilience and bearing capacity this just feels not little as it affects the life of my little boy...    
    • Wheatwacked
      Has anyone found Ozempic affected their symptoms?

      By Wheatwacked · Posted

      Could be the Ozampic is masking your expected symptoms.  Like an analgesic masks pain.  Qzampic slows digestion to lower the rate glucose enters the intestine to slow its effect on glucose level.  It seems it might also slow down the gluten entry into the intestine, reducing its trigger level for the antibodies.  Ultimately the damage from gluten is the same, just not as fast so the pain is less.  Sourdough bread has less gluten.  Ozampic siows its entry.
    • Wheatwacked
      Options - 7 year old boy - Helicobacter pylori and serology

      By Wheatwacked · Posted

      You can sell it better if the whole family does gluten free.  If he does have Celiac Diease, it is genetic so either you, your spouse, or both have a 40% chance of also having Celiac.  There are over 200 non classic symptoms also caused by celiac disease not often considered by doctors. Joint pain, muscle pain, muscle cramps, osteoporosis, and allergies for starters.  
×
×
  • Create New...