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.

  • 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 commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    2. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    5. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

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

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.