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

Gluten Sensativity Help?


csad859

Recommended Posts

csad859 Newbie

This is my first post

 

Hi I have been struggling/frustrated with my health for the past two years now. I feel like I've seen every doctor out there and no one has been able to give me an answer. To start off I have had ever changing symptoms over the past 2 years, it all started and still seems to circulate around fatigue. Up until this last year the symptoms have taken on some neurological traits like hand tremors, hand circulation/tingiling, eye/face twitches, and feet tingling. The one thing I’ve usually been able to notice is these symptoms tend to be worse after I eat, (The other night I ate a burger had two beers and felt super bloated)  

 

I have had my blood tested for celiac and it came out negative but many things I have read say that you can still be gluten sensitive. My main point of this post is just wondering if anyone else has had symptoms like me and tested negative for celiac before I attempt to go gluten free.

 

My main symptoms are

  • Fatigue
  • Hand Tremors
  • Leg Tremors
  • Hand/Leg Tingling/circulation
  • Exercise resistance
  • Stomach Bloating at times
  • Eye Twitches/Facial Tremors
  • Sometimes in the afternoon at work the fatigue will hit so bad its hard to focus my eyes and keep them open
  • Teeth Chattering constantly

 

 

Any posts/opinions help

 

 

Thanks so much

Frustrated C. :wacko: 


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



Celiac.com Sponsor (A8-M):



1desperateladysaved Proficient

Hi Frustrated,

 

I hope you figure things out. Did you have your nutrient levels checked?

 

First I am celiac.  I have experienced shakes.  That was solved by a magnesium supplement. There may be other reasons for the shakes, but that was my reason.  I also had twitching eye at times.  I haven't had this recently and do not know why it is gone.

 

I have trouble with numbness which I am trying to solve with Vitamin B.  I have read this can also be perceived as pinprick sensations or tingling.

 

Fatigue or fogginess was my greatest symptom.  Bloating was another of my symptoms for 30+ years.

 

Have you started a gluten free diet?  Did you have all of the celiac panel tests done?  I would suggest you look into the gluten free angle further.

 

Let us know how it goes.

 

Diana

nvsmom Community Regular

Welcome to the board.

 

I can't add any personal experiences except to say some of your symptoms are similar to mine (but I had the positive blood test).  If you give this some time, I am sure some serological negative celiacs or NCGI's will chime in on their experiences.

 

From what I have learned, Non-Celiac Gluten Intolerance has pretty much the same symptoms as celiac disease minus the small intestinal villi destruction. If you are going to give gluten-free eating a try, please give it at minimum 3 months (6 is better) as the symptoms that are not intestinal in nature tend to take longer to improve (I still have some issues at almost 1 year gluten-free).

 

Have you had your blood sugar tested for diabetes or hypoglycemia? I used to get the shakes when I was undiagnosed but I'm unsure if it was caused by celiac disease or from hypoglycemia (from a diet higher in starches). It could be something to consider.

 

Best wishes.

csad859 Newbie

As of today I have started the Gluten Free diet to see where it goes. After a little bit on the diet I think I plan on seeing a dietician to figure out what type of vitamens I will need to take (I understand going Gluten-Free can limit ones intake of certain vitamens.

 

1Desperateladysaved - Yes I get the pinprick and numbness sensation. My hands also model. change colors, get spotty do yours do that?

 

Nvsmom - I have tested my blood sugar on and off for 3 months and never found it to be lower than what is considered average.

 

Thanks for the support!.

cyclinglady Grand Master

As of today I have started the Gluten Free diet to see where it goes. After a little bit on the diet I think I plan on seeing a dietician to figure out what type of vitamens I will need to take (I understand going Gluten-Free can limit ones intake of certain vitamens.

 

1Desperateladysaved - Yes I get the pinprick and numbness sensation. My hands also model. change colors, get spotty do yours do that?

 

Nvsmom - I have tested my blood sugar on and off for 3 months and never found it to be lower than what is considered average.

 

Thanks for the support!.

Going gluten free (gluten-free) won't make you vitamin deficient.  Most people who have intestinal damage may need additional vitamins and supplements until they heal.  As long as you eat whole natural foods and vary your diet, you won't have a problem.  Stay clear of processed gluten-free foods -- they're the ones with little fiber and nutrition (i.e. cookies, breads, etc.)

Pauliewog Contributor

I tested negative too. But after doing two gluten challenges where I ended up vomiting for 12 hours each time, my doctor just said, "avoid gluten." I went 100% gluten free a year ago Feb. By April I had tons of energy and felt a million times better.  I had all sorts of odd symptoms that disappeared. I strongly believe that you have to eat good food. I never eat processed anything. I make all my meals. I also started following a primal diet which I found easier to follow. I never eat out either. It isn't easy but it is more of an inconvenience than anything. Once you start to feel better you realize you never want to feel bad again!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,021
    • Most Online (within 30 mins)
      7,748

    maltawildcat
    Newest Member
    maltawildcat
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.