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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,048
    • Most Online (within 30 mins)
      7,748

    Leah Gallagher
    Newest Member
    Leah Gallagher
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Diana Swales
      A nutritionist typically focuses on general wellness, lifestyle guidance, and preventative health. A dietician allowed to provide medical nutrition therapy. When i was diagnosed there was zero support and few dieticians and Dr understood celiac disease.  I typically guide a newly diagnosed celiac to a whole food diet to easily transition to the gluten free lifestyle  
    • Scott Adams
      Your gluten-free journey sounds like a lot of trial and error—especially working in a deli where gluten exposure is constant! The eye-watering issue could be an airborne gluten sensitivity (like flour dust irritating your eyes) or even a mild wheat allergy, since you’re around it daily. A daily antihistamine (like Claritin or Zyrtec) might help if it’s allergy-related, but avoiding airborne gluten as much as possible (masking, washing hands/face often) is key. It’s great you’re tracking triggers—high-fiber foods and certain gluten-free substitutes (like those tortillas or PB pretzels) can sometimes cause similar symptoms due to additives or digestive adjustments. For travel, pack safe snacks (protein bars, nuts) and research gluten-free translation cards for Aruba. On flights, opt for packaged gluten-free meals or eat beforehand. Many gluten-free foods and baking mixes contain xanthan gum or other gums like guar gum. Although they are both gluten-free, they may cause IBS-type issues in some people with celiac disease or gluten sensitivity:   You’re doing all the right prep—trust your research and enjoy your trips! 
    • Scott Adams
      It’s scary how hidden gluten can be—even in non-food products like hair care! Your experience is a great reminder that topical products with gluten can cause systemic reactions in some people with celiac disease, especially if they’re accidentally ingested (like when shampoo runs down your face). While not everyone reacts to external exposure, your symptoms—joint pain, brain fog, and GI issues—clearly show your sensitivity. It’s frustrating that companies aren’t required to label “gluten-free” on cosmetics, so ingredient checks are a must. Don’t feel stupid; many of us learn this the hard way! Thanks for sharing your story—it’s a wake-up call for others to scrutinize everything, from lotions to makeup. Hope you’re feeling better now that you’ve ditched the culprit!
    • Scott Adams
      It’s possible—though not extremely common—to develop a wheat allergy in addition to celiac disease. While celiac is an autoimmune reaction to gluten, a wheat allergy is an IgE-mediated response to wheat proteins, which can cause allergic symptoms like hives, swelling, or even anaphylaxis. Your recent anaphylactic reaction strongly suggests a true wheat allergy has developed alongside your celiac disease. Research on this overlap is limited, but some people with celiac do develop other immune-related conditions, including allergies. Repeated gluten exposures may have sensitized your immune system over time, leading to this new allergic response. Since wheat allergy involves different proteins than celiac, you could now be reacting to both. An allergist can confirm this with skin prick or IgE blood tests. Moving forward, you’ll need to avoid all wheat (not just gluten) and keep your Epi-Pen handy. Many in the celiac community report similar experiences, so you’re not alone. Glad you’re okay after that scary reaction—thanks for sharing your story, as it’s an important reminder of how complex these conditions can be.
    • Scott Adams
      Congratulations on the new qualification as a Nutrition Coach. Can you tell me if this is the same qualification as a registered dietitian?
×
×
  • Create New...