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
Mothering3
Posted

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
eatmeat4good
Posted

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
Mothering3
Posted
  • Author

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
Mothering3
Posted
  • Author

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
ravenwoodglass
Posted

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
Mothering3
Posted
  • Author

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
ravenwoodglass
Posted

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
Mothering3
Posted
  • Author

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.

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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
    2. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    3. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in...
    4. SilkieFairy
      - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash...
    5. catnapt
      - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      learned I had a high PTH level in 2022 suspected to be due to low vit D got my vit D level up a bit but still have high PTH I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    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

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

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

      By catnapt · Posted

      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • 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.