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

Feeling So Horrible


Ys255

Recommended Posts

Ys255 Rookie

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

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

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

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

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

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

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

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

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

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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - thejayland10 replied to thejayland10's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      TTG IgA and IGA elevated mildy

    2. - HilaryM posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      New onset constant gas

    3. - knitty kitty replied to Bindi's topic in Super Sensitive People
      43

      Refractory or super sensitive?

    4. - lizzie42 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Gluten free and oat free bars not sugary?

    5. - knitty kitty replied to MagsM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Inflammation and Menier’s disease link?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,770
    • Most Online (within 30 mins)
      7,748

    R633
    Newest Member
    R633
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • thejayland10
      my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening  thank you for attaching this, could this happen randomly even after being gluten-free for so long ? my ttg iga was 16.5 3 months ago and jumped to 30.1 last week. my iga was 415 and jumped to 455. This was done at a different lab though than the first test for ttg iga one had units as ml the other as cu... so not sure if they really jumped as much as shown. i am so strict on my diet and have no clue why this is happening 
    • HilaryM
      Hi all, I’ve been following a strict gluten-free diet for 1.5 years since I was diagnosed. The last few weeks though I’ve suffered almost continual bloated stomach and flatulence. It literally is almost constant - and I was never this way before. I can’t think of any change to my diet, activity, etc. I’m dying - it’s so uncomfortable and embarrassing to feel like I have zero control over this. Any ideas? Thank you!
    • knitty kitty
      @Levi, How are you doing?  Sorry I missed your posts.   How's your thyroid?  Did your Vitamin D stabilize?  Do you have long hauler syndrome after Covid? Consider switching to Vitamin D 3, the natural form of Vitamin D.  Vitamin D 2 is the synthetic form of Vitamin D which the body can have difficulty changing to an active form.  Also, Thiamine is needed to active Vitamin D.   Hypothyroidism can be caused by Thiamine deficiency.  The thyroid is an organ that uses lots of thiamine.  sometimes thyroid deficiency can also cause hyperthyroidism, or swings between both hyper- and hypo-thyroidism. We need more Thiamine when we're sick with an infection (like Covid) or injured.  We need more Thiamine when we're physically active.  We need more Thiamine when we're emotionally stressed or worried.  Our brain uses the more Thiamine just thinking than our muscles do while running a marathon.  Thiamine is extremely important in fighting infections.  Covid patients and long haulers have found taking Thiamine has improved their survival rate and long term symptoms.   Consider taking a Thiamine supplement like Benfotiamine which has been scientifically shown to promote intestinal healing.  Damaged villi need thiamine to grow back.   Be sure to take a magnesium supplement, too.  Thiamine and magnesium make life sustaining enzymes together.  You also need magnesium to keep calcium in the bones.  The thyroid regulates calcium.  A wonky thyroid can lead to reduced bone density.   Remember the B vitamins all work together in concert so adding a B Complex to Benfotiamine and magnesium supplements and Vitamin C would be great in improving absorption of nutrients while we're dealing with celiac disease. Namaste
    • lizzie42
      I'm looking for bars or non perishable snacks for my 2 kids. They are 5 and 3. The 3 year old seems sensitive to oats also. We do a lot of long hikes and bike rides. They eat mostly fresh foods but for these rides and hikes we need easy and non perishable. Also that taste good! We do a lot of larabars and freeze dried apples but those are getting old. Any ideas? 
    • knitty kitty
      Oh, @MagsM, Sorry you had that happen with Niacin.  500mg is the maximum amount of Niacin one should take.  Niacin works hand in hand with Thiamine, so a big influx like that can imbalance thiamine if not supplemented at the same time.  All the B vitamins work together in concert.  Niacin in doses at 500 mg or above have been used by doctors to lower triglycerides levels and raise HDL, the good cholesterol.  Pharmaceuticals to do the same thing are more expensive and thus more profitable for physicians. Has your doctor tested you for H. Pylori?  An infection by H. Pylori can be tested for by your doctor.  H. Pylori can cause low tTg IgA results, too.   I would hold off on the microbiome test for now.  Your microbiome is going to change when you go gluten free.  Your microbiome will change when you start taking Thiamine.  Thiamine supplementation influences which microbes grow in the intestines, encouraging beneficial bacteria and getting rid of the bad ones.  Thiamine in the form Benfothiamine promotes intestinal healing, too.  Adopting the Autoimmune Protocol Diet (by Dr. Sarah Ballantyne, a Celiac herself) after diagnosis will also change your microbiome.  This is the best diet to heal and recover, IMO.   If you're going to have more testing done for vitamin deficiencies, don't take vitamin supplements beforehand, otherwise the tests will measure the vitamin supplements in your bloodstream and give false results.  Same thing will happen if you take B vitamin shots.  The supplements you mentioned (Arterosil HP and Vascanox HP) are herbal support and do not contain all eight B vitamins.  There's no harm in taking them, but I prefer a B Complex that contains all the B vitamins in activated forms like Life Extension's Bioactive Complete B Complex.  All the B vitamins work together in concert.  Magnesium is important to supplement as thiamine and magnesium make life sustaining enzymes together.  Do not buy supplements containing Thiamine Mononitrate because it is not biologically active.  It is very hard for the body to utilize.  Most of it (70%) passes out unused.    Yes, my Meniere's disease has not returned.  I was deficient in Vitamin D.  I took high doses of Vitamin D 3 to correct the deficiency quickly.  I also took TTFD (tetrahydrofurfuryl disulfide) which is a form of thiamine different from Benfotiamine.  TTFD can cross the blood brain barrier without a carrier, so it can get into the brain very easily.  TTFD helps the Vagus nerve function.  The Vagus nerve regulates the ears and balance, and also the digestive system.  I like Allithiamine by Ecological Formulas.  I also like Thiamax by Objective Nutrients.  You should have improvements within a hour with TTFD.  TTFD is much stronger, so lower doses will give amazing benefits (50-200 mg).   I hope this helps give you some direction to take on your journey!
×
×
  • Create New...