Jump to content
  • 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):

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
      134,082
    • Most Online (within 30 mins)
      10,442

    Joe B
    Newest Member
    Joe B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...