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

TIAs/Neurological Testing


Mothering3

Recommended Posts

Mothering3 Apprentice

I got diagnosed with Celiac Disease on Friday through a positive blood test after I started having liver problems.

About 3 years ago, while pregnant, I had a TIA (ministroke). They never found the cause of it, so (rather foolishly) diagnosed it as a migraine because of my age (25 at the time), and my being pregnant, even though my symptoms were classic TIA, and very atypical for a migraine.

A little over a year ago, I had another. This time I was at a better hospital. They admitted me for stroke care, did way more testing, and still found nothing. They diagnosed it as a TIA, with underlying cause unknown. They put me on aspirin therapy.

Now that I have been diagnosed with Celiac, I am wondering: Is there a test I could do to see if my TIAs are related to Celiac? If they are, I could probably stop aspirin therapy. Should I see a neurologist in addition to my GI?

Thoughts?


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



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

Yes, I would. If you can see a neurologist they may be able to help you now that you have been diagnosed with Celiac. That is too serious to make the decision about stopping aspirin therapy on your own. But I wouldn't hold my breath that you will be able to find a neurologist knowledgeable about Celiac. But maybe if you can find a smart one, they will be willing to get up to speed on it to help you in your situation.

That is incredible that they called it a migraine. And that you had to suffer it again. Thank god you didn't stop looking for answers. Stay strong and yes, I would see a neurologist. They should be able to monitor such a thing with scans or something.

Mothering3 Apprentice

Yes, I would. If you can see a neurologist they may be able to help you now that you have been diagnosed with Celiac. That is too serious to make the decision about stopping aspirin therapy on your own. But I wouldn't hold my breath that you will be able to find a neurologist knowledgeable about Celiac. But maybe if you can find a smart one, they will be willing to get up to speed on it to help you in your situation.

That is incredible that they called it a migraine. And that you had to suffer it again. Thank god you didn't stop looking for answers. Stay strong and yes, I would see a neurologist. They should be able to monitor such a thing with scans or something.

Well as far as the TIAs, they do not show up on a scan even if I have had one. They diagnosed it based on self-reported symptoms. I was curious if there is some kind of test that people do to check for Celiac-related neurological damage. I don't know if that is possible or not.

Jade

Mothering3 Apprentice

That is incredible that they called it a migraine.

I know. Don't you love when doctors diagnose an individual based on broad health data rather than the person in front of them???

I've heard this happens with celiac disease a lot. Just heard of a woman who was told by her doctor that she did not have Celiac or need to be tested for it because she was overweight, and "Celiacs are underweight".

Seriously, if you are going to be an MD it is important to understand how medical statistics work. And that is not how they work.

ravenwoodglass Mentor

Do you have balance issues? If you do mention them to the neurologist if you do see one. Have the TIA results sent to him or her also. They can do an MRI that looks for brain lesions, UBOs, that are found with celiac that has attacked the brain. There are tests they can do to see if you have had a TIA including a CT scan of the brain. There is also the possibility that what you had was indeed a migraine as that is something quite a few of us suffer from. The most important thing is for you to get right to an ER, calling an ambulance if needed, if it happens again.

Mothering3 Apprentice

Do you have balance issues? If you do mention them to the neurologist if you do see one. Have the TIA results sent to him or her also. They can do an MRI that looks for brain lesions, UBOs, that are found with celiac that has attacked the brain. There are tests they can do to see if you have had a TIA including a CT scan of the brain. There is also the possibility that what you had was indeed a migraine as that is something quite a few of us suffer from. The most important thing is for you to get right to an ER, calling an ambulance if needed, if it happens again.

I did have those tests done at the time of both of my TIAs and have not had any neuro symptoms since then. They did not find anything. I think they would have seen lesions if that's what was causing the activity, but I don't know. My understanding is that it is common for TIAs to not show up on a brain scan, though sometimes they do. But what defines it as a TIA as opposed to a stroke is that there is no brain damage. If there is brain damage, even slightly, it is considered a stroke. I guess sometimes there are some other signs on the scan that some activity has happened, but oftentimes there is not. Also, since I went straight to the hospital at the onset of symptoms, they could also potentially see a migraine on the scan, but did not.

Migraine has not been ruled out.

Migraines are typically: accompanied by a headache or visual disturbances, last an hour or more in length, come on gradually, if numbness is involved it is typically bilateral numbness.

TIAs typically: come on suddenly, no headache or visual disturbances, last 1 minute-1/2 hour. come on suddenly, if numbness is involved it is typically unilateral.

My episodes fit all of the criteria for TIA and none for migraine. (Also involved aphasia, common TIA symptom). But it is definitely possible to have a migraine aura with no headache that seems like a TIA, it just seems less likely than a TIA to me given my symptoms.

ravenwoodglass Mentor

Hopefully a good neurologist will be able to get to the bottom of what is going on. It must have been a very scarey experience and I hope it doesn't happen to you again. I agree with the other poster that you shouldn't stop the asprin until you have gotten an ok from a good neuro.


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



Celiac.com Sponsor (A8-M):



Mothering3 Apprentice

Oh yeah, I wasn't intending to stop the aspirin without talking to a doctor. I was just thinking one reason to see a neurologist is that if we could find a connection, it might make sense to stop the aspirin. Wouldn't mind having one less pill to take!

Hopefully a good neurologist will be able to get to the bottom of what is going on. It must have been a very scarey experience and I hope it doesn't happen to you again. I agree with the other poster that you shouldn't stop the asprin until you have gotten an ok from a good neuro.

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 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

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

    • Total Members
      133,335
    • Most Online (within 30 mins)
      7,748

    johnfreirefr
    Newest Member
    johnfreirefr
    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

    • knitty kitty
      @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
      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
      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
      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
×
×
  • 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.