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

A Question For The Neuro Folk - Women


Kamma

Recommended Posts

Kamma Explorer

Hi. I have a question for the women who are affected primarily neurologically:

During your healing process did your symptoms get really intense just prior to your period and a few days after getting it?

I am ingesting only meat, vegetables and fruit so I know that I am not getting any gluten by accident. However, my vertigo has ramped right up and I notice that it's always in the week before my period and for a few days after.

Does anyone else experience this or other symptoms during that time? Does it ever stop?

Thanks!

Kamma


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

I've always noticed my DH was worse on certain weeks of my cycle. I also had neuro issues but never noticed a cycle with them.

I'm pretty sure the whole ai thing screws up our hormonal balance.

Skylark Collaborator

I was getting menstrual migraines until I started getting them all the time. :blink:

ravenwoodglass Mentor

I used to have more problems before my period. I don't know if that would have changed gluten free since celiac took my period away early.

One thought. Are you on the pill? If you are some have the pills with the hormones in them then a week of placebo pills. Maybe your system doesn't like something in the those?

Kamma Explorer

Nope, not on the pill. Had my tubes clipped since I was 28.

I've been watching my symptoms for the past three months since going gluten free. The vertigo and exhaustion/brain fog slowly lessened but always returned with a vengeance prior to and after my menstruation. It's to the point where my head is bobbing and I'm having the torso rotations and lurching sideways when I walk.

I can't understand the connection and am trying to wrap my head around why the hormonal fluctuations would cause this or like in your cases, the headaches and DH.

Ugh! I hate not knowing or not being able to understand what's going on. I feel like I'm at the mercy of some great force that decides to throw a monkey wrench into things and mess me up. Again!

pricklypear1971 Community Regular

Nope, not on the pill. Had my tubes clipped since I was 28.

I've been watching my symptoms for the past three months since going gluten free. The vertigo and exhaustion/brain fog slowly lessened but always returned with a vengeance prior to and after my menstruation. It's to the point where my head is bobbing and I'm having the torso rotations and lurching sideways when I walk.

I can't understand the connection and am trying to wrap my head around why the hormonal fluctuations would cause this or like in your cases, the headaches and DH.

Ugh! I hate not knowing or not being able to understand what's going on. I feel like I'm at the mercy of some great force that decides to throw a monkey wrench into things and mess me up. Again!

Have you tried natural progesterone cream to see if it helps? I was low for a while and knew it was progesterone because my period wouldn't stop, but I'd use the cream and it would for 12 hours. Took 2 doses per day to stop that for a few months. Then, I needed it for the second half of my cycle for about 6 months (sore boobs)- then I felt worse with it so I stopped and sore boobs went away. Read a Dr. John Lee book for info on how to use it.

Kamma Explorer

Have you tried natural progesterone cream to see if it helps? I was low for a while and knew it was progesterone because my period wouldn't stop, but I'd use the cream and it would for 12 hours. Took 2 doses per day to stop that for a few months. Then, I needed it for the second half of my cycle for about 6 months (sore boobs)- then I felt worse with it so I stopped and sore boobs went away. Read a Dr. John Lee book for info on how to use it.

I will look up Dr. John Lee, Prickly. Thank you.


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



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

I will look up Dr. John Lee, Prickly. Thank you.

In the end it was iodine causing my DH flare (after gluten-free), but there was definitely an ebb/flow of rash based on my cycle.

My ND is also treating/testing me for adrenal issues...so maybe that's another area to look?

dilettantesteph Collaborator

My glutening symptoms definitely get worse just before and at the start of my period.

Kamma Explorer

Have been doing some more reading and apparently it's common for women with any kind of autoimmune disease to experience a worsening of symptoms just prior to and for a few days after their menstruation. I'm trying to read why but that requires a clearer head than what I've got right now to go through and understand the scientific research papers.

:lol:

pricklypear1971 Community Regular

Have been doing some more reading and apparently it's common for women with any kind of autoimmune disease to experience a worsening of symptoms just prior to and for a few days after their menstruation. I'm trying to read why but that requires a clearer head than what I've got right now to go through and understand the scientific research papers.

:lol:

Would make sense since some believe that all ai stems from the same root.

I don't know ai is the cause or effect but when I help my hormonal and endocrine system (progesterone, DHA) I see rapid and obvious improvements.

Exercise helps me tremendously. That may be the sugar factor for me, or it may be because exercise helps stabilize hormones, or because it helps rid the body of stuff my ai body can't process (according to one book).

It's hard as heck to exercise but I've learned it helps so even if it's a short walk, do it.

Kamma Explorer

Would make sense since some believe that all ai stems from the same root.

I don't know ai is the cause or effect but when I help my hormonal and endocrine system (progesterone, DHA) I see rapid and obvious improvements.

Exercise helps me tremendously. That may be the sugar factor for me, or it may be because exercise helps stabilize hormones, or because it helps rid the body of stuff my ai body can't process (according to one book).

It's hard as heck to exercise but I've learned it helps so even if it's a short walk, do it.

Totally with you on the exercise part. On my good days I walk three to four miles with the dogs. I used to be a cyclist/winter cyclist and have taught yoga for 25 years. On my really bad days, like the last three...I can't walk a straight line and my torso is rotating. Ugh.

I'm really going to look into this progesterone stuff. Apparently the last few days before you have your period is when your estrogen and progesterone levels fall.

pricklypear1971 Community Regular

I'd look into adrenal issues, and also keep a food diary to try to find out if something triggers the vertigo in general.

I was getting vertigo episodes before gluten-free - they have stopped now...it's possible there's something else triggering it. Even environmental allergies (I get headaches and ear fluid when allergens are high, but nothing like they used to be).

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,037
    • Most Online (within 30 mins)
      7,748

    cbattiato
    Newest Member
    cbattiato
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is an older article, but may be helpful.  
    • gfmom06
      I have had orthodontic work done. The 3M invisalign material was no problem. BUT my retainers are another matter. They seemed okay for a few months. Now, however, they cause a burning sensation on my tongue, gums and insides of my lips. The burning sensation is now spreading to my throat. I notice it when I breathe. This is annoying and interferes with my enjoyment of eating. I am visiting with my provider tomorrow. We'll see where this goes from here.
    • Beverage
      Exactly which blood tests were done? There are a few different ones and some docs don't do them all. Also, your results and reference ranges for each?
    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
×
×
  • 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.