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

Still Spaced Out


ndw3363

Recommended Posts

ndw3363 Contributor

I've been gluten free for about 2 weeks. However, I still have a very spaced out feeling. I've triple checked everything I've eaten today (including supplements), but my head is still all fuzzy. Am I just adjusting to the new diet? I've changed my bathroom products, my hand lotion, got rid of my chewing gum that had gum base in it...not sure what more I can get rid of at this point. By the way, this forum has helped a newbie like me SO much. Thank you all!!


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



Celiac.com Sponsor (A8-M):



love2travel Mentor

I've been gluten free for about 2 weeks. However, I still have a very spaced out feeling. I've triple checked everything I've eaten today (including supplements), but my head is still all fuzzy. Am I just adjusting to the new diet? I've changed my bathroom products, my hand lotion, got rid of my chewing gum that had gum base in it...not sure what more I can get rid of at this point. By the way, this forum has helped a newbie like me SO much. Thank you all!!

Me, too! I've been strictly gluten-free about 18 or so days and am not myself. I felt much better on gluten as I did not feel ill at all and now I do. Not bad, just yucky. Plus my short-term memory is atrocious - I struggle frequently to find a word when I am speaking. Sooooo unlike me. Hope this ends soon as it is sort of disconcerting!

IrishHeart Veteran

I've been gluten free for about 2 weeks. However, I still have a very spaced out feeling. I've triple checked everything I've eaten today (including supplements), but my head is still all fuzzy. Am I just adjusting to the new diet? I've changed my bathroom products, my hand lotion, got rid of my chewing gum that had gum base in it...not sure what more I can get rid of at this point. By the way, this forum has helped a newbie like me SO much. Thank you all!!

Boy, I know that spacey feeling and it is very scary and depressing. I had it for 2 years and am happy to say it is disappearing!!. (I used to say to my husband that I felt like my brain was dipped in vaseline :unsure:) I had a really hard time with all that. Thought I was going mad sometimes.

It took me about 3-4 weeks to start to see that sensation diminish and I am greatly relieved and encouraged! I am not as sharp as I once was YET, but I hope that returns in time. Everyone on here says it will and to be patient.

As for the feeling worse after going gluten-free---I did too. It's withdrawal and it passes, too. Drink a lot of water -- hydration is essential. Try to exercise, take walks and clear your head. I couldn't really walk I was so bad before, so I just kept going outside and putting my face up to the sun. Stick to pure, whole foods. Try to relax. Soak in a tub. Be good to yourself. Your body is healing.

... Everyone is different and symptoms go when they go...I know, it stinks.

I never thought I'd be this clear again--I was fumbling for words and my short term memory suffered greatly and I was terrified I would never read and comprehend anything ever again, but I do now!! Hang in there!

pondy Contributor

I've been gluten free for about 2 weeks. However, I still have a very spaced out feeling. I've triple checked everything I've eaten today (including supplements), but my head is still all fuzzy. Am I just adjusting to the new diet? I've changed my bathroom products, my hand lotion, got rid of my chewing gum that had gum base in it...not sure what more I can get rid of at this point. By the way, this forum has helped a newbie like me SO much. Thank you all!!

I don't feel like myself either! I also get that "spaced out" feeling - plus zero motivation, memory lapses, extreme fatigue & anxiety.

I saw my GP today - when I told her these symptoms, she said that they are likely due to very poor absorption of essential nutrients. Doc also said that it can take 6 month to 2 years or so to heal.

My blood test confirmed my Celiac just about 1 week ago. I haven't been gluten free for long & they tell me not to expect instant results. I'm trying hard to be patient with my body & do it no further harm.

Just a note on the body lotions, etc... - I should change those too? I had no idea! Can anyone recommend some safe brands?

I know there is hope and that we will heal, and I agree that this forum is a great place to find support! I thank all here as well!

IrishHeart Veteran

I don't feel like myself either! I also get that "spaced out" feeling - plus zero motivation, memory lapses, extreme fatigue & anxiety.

I saw my GP today - when I told her these symptoms, she said that they are likely due to very poor absorption of essential nutrients. Doc also said that it can take 6 month to 2 years or so to heal.

My blood test confirmed my Celiac just about 1 week ago. I haven't been gluten free for long & they tell me not to expect instant results. I'm trying hard to be patient with my body & do it no further harm.

Just a note on the body lotions, etc... - I should change those too? I had no idea! Can anyone recommend some safe brands?

I know there is hope and that we will heal, and I agree that this forum is a great place to find support! I thank all here as well!

Hi Pondy--I think I talked with you on another post!!

I use Savonnerie gluten free products. Check the Internet. But that's because I have some problems with soy (often in beauty products) and I cannot seem to figure out what I am reacting to (I have burning, red skin and itching).

AVOID shampoo and hair spray with HYDROLYZED WHEAT PROTEIN.

There are some threads on here that have "safe"beauty products listed. Mostly I find, some people think you have to change all the beauty products, others don't. (I do because I am sensitive to them.)

Hang in there. It really does get better!! :)

healinginprogress Enthusiast

Pretty glad to read that others are feeling like this...the foggy-head, memory loss...yeah, just all around not feeling like myself! Really can't wait for things to get better.

With regards to shampoo... I guess I should really change mine. The thing is, I JUST dyed my hair pretty much platinum blonde, so I'm using a purple shampoo so it doesn't get brassy...and I have a pretty strong feeling that nobody makes a gluten-free purple shampoo lol. But maybe if I used gluten-free most of the week and then the purple just once a week and be very careful?

IrishHeart Veteran

Pretty glad to read that others are feeling like this...the foggy-head, memory loss...yeah, just all around not feeling like myself! Really can't wait for things to get better.

With regards to shampoo... I guess I should really change mine. The thing is, I JUST dyed my hair pretty much platinum blonde, so I'm using a purple shampoo so it doesn't get brassy...and I have a pretty strong feeling that nobody makes a gluten-free purple shampoo lol. But maybe if I used gluten-free most of the week and then the purple just once a week and be very careful?

um...I'm not sure. I know some people use the Garnier line?

I had to stop coloring my hair because my hair fell out and my scalp was peeling and had sores on it...this nasty disease! anyway, I am happy you have good hair!!

I pray mine returns and I can look pretty once more... :)


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



Celiac.com Sponsor (A8-M):



healinginprogress Enthusiast

um...I'm not sure. I know some people use the Garnier line?

I had to stop coloring my hair because my hair fell out and my scalp was peeling and had sores on it...this nasty disease! anyway, I am happy you have good hair!!

I pray mine returns and I can look pretty once more... :)

Wow, that's terrible, I hope it does, too! I had only been gluten-free for about 4 days when I got it dyed and it was blindingly painful, my scalp was soooooo sensitive and I ended up with scabs and dry scalp...I hear that can happen with bleach sometimes...but I can put up with a lot of pain and it was pretty much unbearable. If I don't start feeling better on the very limitied diet that I'm on now then I imagine I won't be dying again and will be changing shampoos and scrubbing my house from top to bottom I guess :P

Not only is this disease nasty, painful, and a lot of time just plain gross...it is also a LOT of work!!! :blink:

IrishHeart Veteran

Wow, that's terrible, I hope it does, too! I had only been gluten-free for about 4 days when I got it dyed and it was blindingly painful, my scalp was soooooo sensitive and I ended up with scabs and dry scalp...I hear that can happen with bleach sometimes...but I can put up with a lot of pain and it was pretty much unbearable. If I don't start feeling better on the very limitied diet that I'm on now then I imagine I won't be dying again and will be changing shampoos and scrubbing my house from top to bottom I guess :P

Not only is this disease nasty, painful, and a lot of time just plain gross...it is also a LOT of work!!! :blink:

That's what happened to me. I have been coloring my hair for years, no problems, but during the last year, my scalp went crazy. Sores, beet red, itchy, peeling...gosh, I hope yours "behaves" for you. the real bummer is...it grew in gray/white :blink: YUCK and it's so thin right now from malabsorption...I'm not happy about it at all.

I hear you. I just had to eliminate MORE foods. Pretty soon, I'll be down to lettuce and water. :angry:

This disease sucks.

I try to focus on how much better I'm going to feel in the coming months after years in agony... :unsure:

Anything will be better than the way I was! :)

Fire Fairy Enthusiast

I had that spaced out feeling for years. Thankfully mine is gone now that I've been gluten free. I hope yours passes soon.

That's what happened to me. I have been coloring my hair for years, no problems, but during the last year, my scalp went crazy. Sores, beet red, itchy, peeling...gosh, I hope yours "behaves" for you. the real bummer is...it grew in gray/white :blink: YUCK and it's so thin right now from malabsorption...I'm not happy about it at all.

I hear you. I just had to eliminate MORE foods. Pretty soon, I'll be down to lettuce and water. :angry:

This disease sucks.

I try to focus on how much better I'm going to feel in the coming months after years in agony... :unsure:

Anything will be better than the way I was! :)

One of my friends thought a picture of me with my new natural hair color was a photo of my mom (she's in her 70's I'm in my 30's). Another friend said, "When are you going to dye your hair again, you look old?" Oh well at least now I don't feel old! :)

IrishHeart Veteran

I had that spaced out feeling for years. Thankfully mine is gone now that I've been gluten free. I hope yours passes soon.

One of my friends thought a picture of me with my new natural hair color was a photo of my mom (she's in her 70's I'm in my 30's). Another friend said, "When are you going to dye your hair again, you look old?" Oh well at least now I don't feel old! :)

The spacey thing is gradually subsiding for me...thanks for telling me it has gone away you-- :) it's encouraging! As for the hair, I can learn to accept the grey/white thing IF it would just grow in some more!!...sigh...

and yes, I am all for not feeling like I'm older than my very active Mom (she's 84 and still goes to the gym 3X a week, cardio kick boxes, uses a stair master & lifts weights!!.. ):blink: ..I'm so weak I can't lift a bag of potatoes and climbing stairs is exhausting....oh well, time will heal me!!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,817
    • Most Online (within 30 mins)
      7,748

    Terry49
    Newest Member
    Terry49
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @Kiwifruit, I agree further testing is needed.  Disaccharidase deficiency is a symptom of Celiac disease.   On your test results, this line  "IgA: 0.9 g/l (norm 0.8 - 4.0)" is referring to Total IgA and it's very low.  People with low or deficient Total IgA should also have DGP IgG test done.  Low Total IgA means you are making low levels of tTg  IgA as well, leading to false negatives or "weak positives".  Maybe a DNA test for known Celiac genes.   Anemia, diabetes, and thiamine deficiency can cause test results like these.  Get checked for B12 deficiency anemia and have your iron (ferritin) checked.  Vitamin D deficiency is common, too.   Might be time to find a gastrointestinal doctor who is more familiar with diagnosing Celiac Disease.   Best wishes on your journey!  Please keep us posted on your progress.  
    • trents
      Yes, there is a trend in the medical community to forego the endoscopy/biopsy and grant an official celiac diagnosis based on high tTG-IGA antibody scores alone. This trend started in the UK and is spreading to the USA medical community. And yes, 5-10x the normal level is what I have been seeing as the threshold as well. Here is the relevant section dealing from the article above dealing with the importance of the total IGA test being ordered. See the embedded attachment.
    • hmkr
      Ok, interesting. Not what I was thinking that meant. I'm reading the article and trying to understand. I see this “According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy” My IgG is 90, which is 6 times. So to me that means it's highly likely I do have it. 
    • trents
      It just means you aren't IGA deficient, i.e., that IGA deficiency cannot have given you artificially low scores in the individual IGA celiac antibody tests. This is explained in the article Scott linked above.
    • hmkr
      Normal range: 70 - 400 mg/dL, a little above middle of the range. So what does that mean? Thank you! I will check out that page you linked. Appreciate it! 
×
×
  • Create New...