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

Lets See Who Can Answer This One?


whattodo

Recommended Posts

whattodo Enthusiast

2 weeks ago i started on the gluten free diet. The only problem i was having then was constant stomach bloatness with a dull pain, and sometimes a numish side of my face. 2 days ago i have been starting to feel very strange in my head and hands. I feel very empty and almost as if i have the shakes on the inside. I keep looking at my hands to check to see if they are shaking but they arent. When i pick things up it almost feels like i have no control with the items i have picked up. This all feels very strange and almost like im drunk. the only thing different i might have done is starting taking vit B compount and some calcium. I have never had these symtoms before the gluten free diet.

The only problem i started off was a sore stomach and no it is all going wrong. my stomach no longer hurts as much on the diet.

Can someone explain to me what on earth is happening to me. it almost feels like i have no control over my hands.


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



Celiac.com Sponsor (A8-M):



Dandelion Contributor

I wish I could give you an answer. I had the same symptoms but it was prior to be gluten free. It has something to do with neuropathy I think. Someone who is a more advanced member can fill you in on that. Maybe that's what is happening to you?

I hope you feel better.

gfgypsyqueen Enthusiast

The numbness in the face and sensation of shaking hands without them actually shaking is concerning. I would have to say go get checked out by a doctor - nuero would be best. Celiacs symptoms can be pretty strange, but when it comes to nerves acting strangly I would go make sure you haven't found some other diisease that you body is battling.

jerseyangel Proficient

I had something very similar to this. I think it was you who I answered in another thread?

Mine got much worse after about a week on the diet, although it began before I was diagnosed. I had the zig-zaggy feeling in my hands, trouble knowing exactly where to put my feet down sometimes when I walked, tingling on my legs especially when resting, and numbness that spread from my face on down--mostly on the left side.

I also had burning sensations in my mouth and on my feet.

These things were definately gluten related for me--but if you aren't sure, or just to be safe, you may want to check with your doctor.

Mine got better very gradually over months. I was glutened on Monday :angry: --first time in a while. (cross contamination from a product I thought was safe) The facial numbness on the left side of my face has returned--milder, but definately back. And this is after nearly 2 years gluten-free.

Nantzie Collaborator

I do have neuro symptoms, but haven't had the numbness or feeling like I'm going to drop something. I do get the internal shakes that you're talking about if I'm glutened. It's most noticeable at night and makes for a horrible version of insomnia.

I did get a feeling of head emptiness at first, but for me it was because my daily headaches went away. It was a weird feeling of lightness. I also wasn't getting the cycling anxiety thoughts that I used to get all the time. So there was a quietness that I had never had before either.

I would try going off the new supplements. They can have gluten in them just like anything else.

If you want to know for sure, stop taking them for a week, then take them again and see if the symptoms return.

I've had a reaction before to a supplement. It wasn't declared gluten-free, but there were no suspicious ingredients, so I took it and ended up having a reaction.

You could also be getting hidden gluten somewhere else. Reactions tend to increase after you're on a gluten-free diet. Your body has basically been used to getting what it thinks is poison and had been forced to build up a tolerance. Now that it knows that the gluten is optional, it's fighting tooth and nail against it.

Before I found out that gluten was causing the problem for me, I was eating gluten all day long. Now, I get sick as a dog from the most small amounts.

You said you're new to the diet, and it does take some time to get it all figured out. Some people have the option of going full-bore immediately; replacing kitchen items that are no longer safe and replacing personal care products (haircare products, cosmetics, soaps, etc.).

Also, if you're living with people who are eating gluten, there's an extra level of careful that you have to be. If someone uses the butter to spread on a piece of gluteny bread, just the knife going back and forth from the gluten bread to the butter is more than enough to make you sick, even if you don't see any crumbs. If your spouse or significant other eats gluten and then kisses you, you'll get a reaction.

It's a lot to get used to, and all you can do is keep moving forward.

Please don't ever feel like you're being a nuisance. We're happy to be able to help people who are in the same spot that we were a few months or years ago. We all came here with the same questions that you have. The only reason we know the answers is because we once asked the same questions.

So kick off your shoes and make yourself at home.

:D

Nancy

sickofit Newbie
2 weeks ago i started on the gluten free diet. The only problem i was having then was constant stomach bloatness with a dull pain, and sometimes a numish side of my face. 2 days ago i have been starting to feel very strange in my head and hands. I feel very empty and almost as if i have the shakes on the inside. I keep looking at my hands to check to see if they are shaking but they arent. When i pick things up it almost feels like i have no control with the items i have picked up. This all feels very strange and almost like im drunk. the only thing different i might have done is starting taking vit B compount and some calcium. I have never had these symtoms before the gluten free diet.

The only problem i started off was a sore stomach and no it is all going wrong. my stomach no longer hurts as much on the diet.

Can someone explain to me what on earth is happening to me. it almost feels like i have no control over my hands.

Are you eating anything new that you had not eaten before the gluten-free diet? This could be a food intolerance or a yeast die-off if you've eliminated sugar and flours. You could try fasting or eating things you are not now eating for a few days (at least 3) to see. We all seem to get the strangest symptoms, I now have what feels like water sloshing in one ear, I've had this off and on before and when I had a doctor she never could see anything in my ear. I have not had gluten but I have lots of food intolerances. I've had the drunk feeling and once slurred my words all day. Thought I was having a stroke! I'd give it another week and if still doing this see your doc.

Nantzie Collaborator

Forgot about that one. I get word slurring if I'm glutened really bad too. Don't feel drunk though, just sound it.

Nancy


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



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

Speaking of word-slurring, when I get glutened (like now), I sometimes have trouble spitting out the right words! It's almost as if my tongue is too big for my mouth! :unsure:

Nantzie Collaborator

Yep. That's exactly how I would describe it. I think it's a DQ1 (gene) thing. More odd neuro symptoms with that.

Nancy

Archived

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

  • 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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,024
    • Most Online (within 30 mins)
      7,748

    Sunset Blue
    Newest Member
    Sunset Blue
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.