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
      132,097
    • Most Online (within 30 mins)
      7,748

    Ann Den
    Newest Member
    Ann Den
    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

    • trents
      Your DGP-G is also high. The thing to do now would be to trial the gluten-free diet for a few months to see if there is improvement in symptoms.
    • trents
      Welcome to the forum, @Roses8721! How long were you off gluten before getting the celiac blood testing done? The testing is not valid after having been gluten free for a significant period of time. Many of your symptoms align with celiac disease.
    • rei.b
      Hello, I am feeling frustrated. I have hEDS and lifelong digestive issues but my GI PA is very focused on my celiac panel and I just want to make sure that she should be focused on that because completely changing my diet seems to have worsened my symptoms.  Symptoms are constipation, diarrhea, and acid reflux with spicy foods and certain foods like tomatoes, bell peppers, and onions. I also don't have a gallbaldder as it was removed almost a year ago. This also exacerbated my symptoms. I did have joint pain from hEDS but that was already treated with low dose naltrexone about 4 months prior to going completely gluten free. Endoscopy was abnormal but inconclusive; basically showed some inflammation - which common with hEDS. I don't have any vitamin deficiency.   Celiac Panel Results: TTG-A <0.5 U/ML Reference Range: 0.5-14.9 U/ML NEGATIVE: <15 POSITIVE: =>15 DGP-A 72.0 U/ML Reference Range: 0.2-14.9 U/ML NEGATIVE: <15 POSITIVE: =>15 TTG-G <0.8 U/ML Reference Range: 0.8-14.9 U/ML NEGATIVE: <15 POSITIVE: =>15 DGP-G 24.0 U/ML Reference Range: 0.4-14.9 U/ML NEGATIVE: <15 POSITIVE: =>15 IgG-A-M Results: IMMUNOGLOBULIN A, QN, SERUM 165 MG/DL Reference Range: 87-352 MG/DL IMMUNOGLOBULIN M, QN, SERUM 164 MG/DL Reference Range: 26-217 MG/DL   What are your thoughts, internet? Are there any questions I should be asking the PA? Thanks!
    • Roses8721
      Help. I’m spiraling. Years of extensive symptoms:  What could this be? Years of: Mildly elevated alk and alt Fatty liver Random days of feeling like I’m coming down w flu but no fever and nobody else in house sick Intermittent diarrhea Severe abdominal distension Long history of cavities and enamel deficiency Sound sensitivity Anxiety and depression Low libido Sun skin allergy Frequent fatigue ended up seeing PCP because I looked 8 mo preg. Started gluten-free diet then celiac serology negative. SW GI Dr dx me w celiac as I had been in bed for 3 days after eating gluten after cutting. GI said not to do biopsy because it was clear what was going on and added to chart. My spiral is not seeing anywhere this is done and want to see if anyone else has dealt w this. If not celiac idk what else I will do. Family history or celiac as well as a death related to this. 
    • miguel54b
      I get canker sores one hour after eating Oats, and pimples in my butt. 
×
×
  • 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.