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

Feeling So Horrible

Ys255

Recommended Posts

Ys255 Rookie
Ys255
Posted

I know, it's only been 3 days without gluten but I find myself hard to keep up.

Stomach troubles have no issue which is nice for once, but physically and mentally I'm struggling with. My eczema has flared up big time, more redness, itchy, irritating, dryness. I've had a headache for 2 days, not like a migraine though, but it's there... I'm extremely tired to a point I can't do simple things like chores, and my anxiety, depression and OCD has really made a bigger impact.

The best way to describe is I'm plain miserable, and finding it very hard to keep going. I've been eating very healthy - yet I feel like I'm on one long hangover with more negative thoughts running through my head.

Whats going on? Am I doing something wrong?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Maybe gluten isn't your problem? I remember you posting your test results and they were negative? I would hate for you to miss a problem while you are assuming it is an intolerance to gluten.

nvsmom Community Regular
nvsmom
Posted

That sounds like it could be withdrawal; about a third of celiacs go through it.  :( When I went through it I as so exhausted no matter how much I slept, I was incredibly cranky and irritable, and I had a migraine that lasted for days. Overall, I was out of withdrawal after about two and a half weeks.

 

Give it time to pass, but as karen suggested, keep an eye out for other causes too - it could be a coincidence.

 

Best wishes. I hope you feel well soon.

Ys255 Rookie
Ys255
Posted
  • Author

Yeah, they were negative, but mentioned my thyroid level was something to look at. My doctor said it was at normal levels, so I'm not sure whether to go for a thyroid test or not. I guess I'll keep going with the gluten free diet for a couple of weeks and see if the symptoms fade out?

nvsmom Community Regular
nvsmom
Posted

My thyroid symptoms felt a LOT like celiac disease symptoms, and low energy was top of the list. I would get it checked. Don't accept "normal" unless they ran all thyroid tests like TSH (should be near a 1 regardless of the range), free T3 and free T4 (ideally in the 50-75% ranges of your lab's normal reference range), and TPO Ab.

The problem with thyroid testing is that the normal range is set up to include 95% of the population but almost 10% of the population has thyroid problems... And half of them will fall in the normal range.

Good luck.

Ys255 Rookie
Ys255
Posted
  • Author

Oh right, I guess it can't hurt to get it checked out. Do you need to be on gluten or anything for testing?

1desperateladysaved Proficient
1desperateladysaved
Posted

I had troubles a few months after I went gluten free.  I got worse before I got better.  I believe I did experience withdrawal and or problems with cross contamination during that time.  I would recommend continuing the diet for at least 6 months while still considering other options.  Make sure to refine your gluten free diet, other gluten product use, and work on possible cross contamination issues to get a fair trial.  Keep on!

 

D

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

Celiac.com Sponsor (A8-M):


tryme Rookie
tryme
Posted

Hi ys255,

I went through similar withdrawal. My GI symptoms disappeared in couple days but my energy and mood went really down and my anxiety up. It took about good 2 weeks for them to start stabilizing. I also started noticing my eczema on my hand return (I didn't have it for 3 years). All of that is setteling down now. I am roughly a month into my diet as well. Please hang in there . Starting is always the hardest part. The people here are very suportive and have wealth of knowledge. They can really empathise with you as they have been through similar struggles.

Also as everyone said, it will be a good idea to get your thyroid checked. I have hyperparathyroidism and it can cause similar GI symptoms and neurologic symptoms as celiac.

nvsmom Community Regular
nvsmom
Posted

Do you need to be on gluten or anything for testing?

 

No, just celiac tests require a gluten challeng of two months. Thyroid testing can be done at any time and is a separate issue.

 

Good luck!

Tbolt47 Newbie
Tbolt47
Posted

Ys,

 

For me 11 months gluten free the GI symptoms cleared up first, followed by the neurological, clumsiness, unsteady   like you were walking  on a boat etc. Lastly the Brain fog, depression and anxiety. I experienced the fatigue throughout the process.

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
      131,870
    • Most Online (within 30 mins)
      7,748
    KRISTENE
    Newest Member
    KRISTENE
    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.