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

Suddenly Bad Headaches! Anyone Else?

mick66

By mick66
in Related Issues & Disorders

Recommended Posts

mick66 Newbie
mick66
Posted

Hi everyone,

went to ent a couple weeks ago cause of sudden severe headaches, dizziness(vertigo), loss of balance, sensitivity to light, sound, buzzing in my ear.(these are still bothering me today) She did some balance testing and a hearing test( which I'm not sure I did so well) She did not tell me the results, but had to turn up the sound and had to be repeated. Also have blurry, double vision can't read much and no memory. I ask someone a ? they answer less than 5 min. later I ask again ( not realizing, is this the brain fog or something else like stroke?

I can't remember the last time I had a headache, they don't run in my family. She suggested I see a ent neurologist, which I did. He told me to get an MRI of my brain and then come back to see him about the

results.

He did ask me about my symptoms and family history, which I told him. He asked if i had fallen or banged m,y head and did mention stroke or tumor in my brain. He used another word for the tumor, but i looked it up.

I am very nervous about this as my grandmother had many mini strokes (TIA's) and then a few regular

strokes ( she was in her 60's, I'm 40) as well as a couple of heart attacks.

Anyone had these problems?

Are these symptoms or diagnoses related to celiac disease? Or is it just my bad luck? Please help, Mick66

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

Celiac.com Sponsor (A8-M):


laurelfla Enthusiast
laurelfla
Posted

please keep us posted!! my sister (diagnosed with Celiac in September or so) is having these same exact symptoms, plus numbness in her feet. her idiot of a doctor scared us all to death when he told her he liked to start from the worst case scenario and work backwards; he told her it might be MS, so they did an MRI and found out she has a healthy brain. the symptoms are still, there, though, and she's not sure what to pursue next.

a friend of hers said that she had a friend who had the same exact symptoms and it turned out to be polyps in her sinuses and she had surgery to correct it. (?) not out of the question, i guess, but i think we've all grown used to these friends who tell us they have friends who have exactly what we have! :P

anything you find out would be helpful. i hope you feel better soon!!

mick66 Newbie
mick66
Posted
  • Author
please keep us posted!! my sister (diagnosed with Celiac in September or so) is having these same exact symptoms, plus numbness in her feet. her idiot of a doctor scared us all to death when he told her he liked to start from the worst case scenario and work backwards; he told her it might be MS, so they did an MRI and found out she has a healthy brain. the symptoms are still, there, though, and she's not sure what to pursue next.

a friend of hers said that she had a friend who had the same exact symptoms and it turned out to be polyps in her sinuses and she had surgery to correct it. (?) not out of the question, i guess, but i think we've all grown used to these friends who tell us they have friends who have exactly what we have! :P

anything you find out would be helpful. i hope you feel better soon!!

Laurelfla,

I go for my MRI of the brain Tues., so when the results come back I will post on the board. You guys are so nice on this board and what a quick response, I am impressed, thank you! I hope your sister's symptoms go away, I would rather have all the D and itching and cramps compared to these other symptoms from the brain that I am experiencing right now and have been for a few weeks now.

Keep me posted on your sister's health, I wish her luck and all my best-I know what she must be going through, why do they get you worked up about the worst scenerios? Afraid of law suits for not mentioning!?

Mick66

Rachel--24 Collaborator
Rachel--24
Posted

I had all these symptoms (except vertigo). I had all kinds of tests...including an MRI on my brain. Everything came back normal. The symptoms mostly go away when I eliminate processed foods but come back if I start to eat processed stuff again. I'm thinking its msg causing the symptoms for me.

2kids4me Contributor
2kids4me
Posted

after several visits to the doctor, for neurologic symptoms... headaches, fatigue, sudden numbness on one side of the face and scalp, drooling on one side, dizziness, dropping things, stumbling, tingling extremities, forgetfulness, klutzy... you name it.. it was initailly blamed on my diabetes.

The GP gave me a B12 shot - ALL the symptoms went away. I now take B12 injections once a month.

B12 deficiency can occur from poor absorbtion (gut damage) or from pernicious anemia because the parietal cells in the stomach that absorb the vitmain have been destroyed by the immune system.

The blood work did not show really low levels but I did respond to the B12...just like people who have neg biopsies or tests yet respond wonderful to the gluten-free diet.

B12 injectioncannot hurt you if given and you dont have the problem, but not getting it when you are depleted WILL cause problems. Oral B12 doesnt work becasue the parietal cells have to be normal.

The symptoms of MS are similar to B 12 deficiency because B12 is required for normal functioning at the neuromuscular junctions

mamaw Community Regular
mamaw
Posted

MY DAUGHTER SOUNDS JUST LIKE THE FIRST POSTER!!!!!!!!!!!

iT REALLY MAKES LIFE DIFFICULT...

jennyj Collaborator
jennyj
Posted

I have developed a headache that occurs everyday at about 1:30 pm. This just started a week ago the same time I stopped taking Asacol(doctors order to stop). I don't have any other symptoms.

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

Celiac.com Sponsor (A8-M):


lapetit8 Explorer
lapetit8
Posted

In what region of your head is the headache?

  • 2 months later...
laurelfla Enthusiast
laurelfla
Posted

mick66, i was away from the board for a while this summer but was just wondering if you are feeling better. my sister is feeling the same, i think -- my parents are upset because she seems to be refusing to go to the dr. about it. she has had a couple of headaches recently and also sees things ("floaters" is what i think they are called, not sure). also her feet are still numb. i will mention the B12 to her and also the processed foods thing. thanks to all of you for posting your ideas!

Archived

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

Go to topic listing

  • 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
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.