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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,928
    • Most Online (within 30 mins)
      7,748

    Grams H
    Newest Member
    Grams H
    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

    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
    • klmgarland
    • DebJ14
      I only went on the multi vitamin AFTER a couple of year of high dose, targeted supplementation resolved most of my deficiencies.  I was on quite a cocktail of vitamins that was changed every 6 months as my deficiencies resolved.  Those that were determined to be genetic are still addressed with specific doses of those vitamins, minerals and amino acids. I have an update on my husband and his A Fib.  He ended up in the hospital in August 2025 when his A Fib would not convert.  He took the maximum dose of Flecainide allowed within a 24 hour period.  It was a nightmare experience!  They took him into the ER immediately.  They put in a line, drew blood, did an EKG and chest Xray all within minutes.  Never saw another human for 6 hours.  Never got any results, but obviously we could see he was still in A fib by watching the monitor.  They have the family sign up for text alerts at the ER desk.  So glad I did.  That is the only way we found out that he was being admitted.  About an hour after that text someone came to take him to his room on an observation floor.  We were there two hours before we saw another human being and believe it or not that was by zoom on the TV in the room.  It was admissions wanting to know his vaccine status and confirming his insurance, which we provided at the ER desk.  They said someone would be in and finally a nurse arrived.  He was told a hospitalist was in charge of his case.  Finally the NP for the hospitalist showed up and my husband literally blew his stack.  He got so angry and yelled at this poor woman, but it was exactly what he needed to convert himself to sinus rhythm while she was there.  They got an EKG machine and confirmed it.  She told him that they wanted to keep him overnight and would do an echo in the morning and they were concerned about a wound on his leg and wanted to do a doppler to make sure he did not have a DVT.  He agreed.  The echo showed everything fine, just as it was at his annual check up in June and there was no DVT.  A cardiologist finally showed up to discharge him and after reviewing his history said the A Fib was due to the Amoxicillan prescribed for his leg wound.  It both triggers A Fib and prevents the Flecainide from working.  His conversion coincided with the last dose of antibiotic getting out of his system.  So, make sure your PCP understands what antibiotics you can or cannot take if susceptible to A Fib.  This cardiologist (not his regular) wanted him on Metoprolol 25 mg and Pradaxa.  My husband told him that his cardiologist axed the idea of a beta blocker because his heart rate is already low.  Sure enough, it dropped to 42 on the Metoprolol and my husband felt horrible.  The pradaxa gave him a full body rash!  He went back to his cardiologist for follow up and his BP was fine and heart rate in the mid 50's.  He also axed the Pradaxa since my husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation.   Oh and I forgot to say the hospital bill was over $26,000.  Houston Methodist!  
×
×
  • 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.