Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Doctor Ordered Mri Of Brain


MyMississippi

Recommended Posts

Rachel--24 Collaborator

I'm joining this thread a little late.

I had a brain MRI early on in my illness....when my neurological symptoms were at their worst. Thankfully, nothing showed up. :)

Since then I've come accross many people who have had the UBO's show up in their MRI.....which later turned out to be caused by Lyme Disease. Most were previously misdiagnosed with MS....and the symptoms (including the UBO's) resolved with treatment. MS and Lyme both cause identical looking UBO's....there's no way to differenciate between the 2 diseases from MRI results alone.

In neurologic Lyme Disease, approximately 15-45% of patients may have white matter hyperintensities. These are sometimes also called UBOs or "unidentified bright objects".

In some patients, antibiotic treatment results in a diminution or disappearance of these hyperintensities. Certain MRI sequences are best able to detect hyperintensities; these include FLAIR sequences and Magnetization Transfer methods. These MRI images in Lyme Disease may appear similar to the demyelinated areas seen in the "white matter" of the brain MRI of patients with multiple sclerosis.

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



  • Replies 63
  • Created
  • Last Reply
ShayFL Enthusiast

Get a serum B12 and an MMA. You sound spot on for B12 deficiency which is very common in Celiac. Have they tested your Ferritin? Low iron stores can also cause neurological problems.

You need a lot more tests. Cheap blood tests. But can tell you a lot. Perhaps a new doctor. One that knows more about Celiac.

georgie Enthusiast
So far I don't think any of them have ordered vit/mineral deficiency tests when I brought up malnutrition with my GI he said "yes, yes, there are lots of things caused by the celiac but you are not eating gluten and they will get better"

I plan on going back to my general care Dr (an Internal Med Dr) after my apts with specialists are done and ask her to test for deficiencies and my thyroid.

Its important to know there are two major reasons to have low B12. One is malnutrition ( caused by Celiac or leaky gut damage) but there is also Pernicious Anemia which is an autoimmune disease. PA will not simply 'get better' with a new diet. If you have one autoimmune disease you at greater risk of others - so always consider that aspect as well. There are tests for PA but they are not more than 50% accurate .... so let your instinct be the guide. When you have the Thyroid tests - make sure its the full panel - especially Free T3and Thyroid Antibodies.

mslee Apprentice

thank you for the advice!

I had my liver biopsy and am waiting on results, have more apts to make, tests to order, and new books to read.

thanks I appreciate the input!

mslee Apprentice

I saw my Internist and requested all these tests, I was happy she seemed fine with ordering them based on my condition...so now just waiting for the results. Going to have my immediate family request the same plus celiac tests.

Lyme is something else worth looking into too, good grief!

Thanks again!

Amber M Explorer
Thank you Deb,

But that thread has no expertise or scientific backing of ANY kind. Just a few people talking about B12 levels and one person Mr D giving advice to cut back without any support for his recommendation.

Absorption of dietary B-12 takes place in the very last part of the small intestine, right before the colon. Absorption requires a biochemical helper molecule called

ShayFL Enthusiast

Amber you may have reacted to something in that B12 (a filler or excipient). Try a different brand. Jarrow is very good and is gluten-free. They come in 1000 mg. Hold under tongue until completely dissolved.


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



Celiac.com Sponsor (A8-M):



  • 3 weeks later...
georgie Enthusiast

Has anyone dx you with Hashimotos Thyroid. You have had Antibodies since 2001.... Do you take meds for Hashis ?

Do you by chance take a B12 supplement already ?

mslee Apprentice

No they never did and now I'm realizing that I probably do have Hasimoto's

I posted results here also:

Open Original Shared Link

& no had not started any regular supplements at time of testing

...will start B12, D, & calcium daily

You know I have not been going to Drs for 14 years for fun, I'm not happy with how much has been overlooked! :angry: That last set of Lab you guys suggested glad I had them run!

thanks!

ShayFL Enthusiast

IT took me 12 years to get dx with hypothyroid......but I cant let myself dwell on those years. Looking forward to the future. :)

mslee Apprentice

yes no point in dwelling on the past, I am just glad the celiac and everything else is being caught at a point in my life where I might be able to get better. Maybe someday I can say "i used to be sick" rather than "i am sick"

it is very exciting to think i can get better & move on with my living my life!

  • 3 months later...
Magician Rookie

I've had many MRIs and each one of them is interpreted as MS despite having no symptoms. It is going on 11 years. Funny thing, never once was a single mimic ruled out. Is Celiac considered to be one?

ravenwoodglass Mentor
I've had many MRIs and each one of them is interpreted as MS despite having no symptoms. It is going on 11 years. Funny thing, never once was a single mimic ruled out. Is Celiac considered to be one?

Celiac disease can cause lesions in the brain that doctors call UBO's (unidentified bright objects). These lesions are very similar to the lesions that are found with MS but are not located in the same areas. If you put celiac and UBOs into a search engine you may be able to find more info on this. When I was at my sickest I was thought to have MS, they found multiple lesions but my clueless neuro just shruged his shoulders and said they meant nothing. It wasn't until after I was finally diagnosed celiac and many of my neuro symptoms went by the wayside that I started doing some research and discovered that these lesions were actually diagnostic of celiac. Just not in the US.

Magician Rookie
Celiac disease can cause lesions in the brain that doctors call UBO's (unidentified bright objects). These lesions are very similar to the lesions that are found with MS but are not located in the same areas. If you put celiac and UBOs into a search engine you may be able to find more info on this. When I was at my sickest I was thought to have MS, they found multiple lesions but my clueless neuro just shruged his shoulders and said they meant nothing. It wasn't until after I was finally diagnosed celiac and many of my neuro symptoms went by the wayside that I started doing some research and discovered that these lesions were actually diagnostic of celiac. Just not in the US.

I have been seen by 4 neurologists. One said definitely MS. The others have said not MS and struck the diagnosis down. I have PCOS, heavy thyroid issues in family. Also have a brain tumor which has caused me tremendous grief over the years.

Is rouleaux a common finding with celiacs? My CBC always shows rouleaux with normal platelet counts. I must be the surprise in the Cracker Jack box!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,791
    • Most Online (within 30 mins)
      7,748

    PamelaMayot
    Newest Member
    PamelaMayot
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • thejayland10
      That is a very good point I do not know if they truly ever went down. With my nutrient levels all being good, CBC, metabolic panel I assumed everything was fine over the years. Now Im worried this is refractory celiac or something else 
    • RMJ
      I don’t know how common it is, but it happens.  Total IgA going up is not necessarily celiac related.  The body can make IgA antibodies against all sort of things.   But if I understand correctly that until recently you haven’t had a celiac blood test since diagnosis, how do you know that your recent blood tests are a mild rise, vs never going down to the normal range? That also can happen, although not too common. Some people with celiac disease do react even to purity protocol certified gluten free oats. Removing oats from your diet for a few months and retesting is probably a good idea.
    • thejayland10
      interesting I did not know that was that common or could take that long.  When I was diagnosed 15 yrs ago I was told just follow gluten-free diet and follow up with primary care doctor (who never checked celiac panel again). I felt way better and all the major symptoms went away. It wasn't until recently at 25 (14 yrs after diagnosis) that I thought to follow up with a gastro doctor who then did a celiac panel and noted those minor elevations 3 months ago then I got them checked again by another doctor the other week and were showing roughly the same thing.  I am very strict with what I eat and dieitican was maybe thinking it could be oat flour. I do eat a fair amount of processed food but I will not touch anything unless it is certified gluten free.  Do you see this pretty commonly with others? Having mild rises in TTG IGA and IGA who have been on gluten-free diet for years? 
    • RMJ
      Do you have any other results from either of the two labs where you’ve been tested recently?  If so, are the newest results from that lab elevated over previous results? It took me 5 years to get all of my antibodies into the normal range. Then 3 years later one went up into the positive range.  I realized that I had started baking with a different brand of gluten free flour.  When I stopped using that flour the level went back to normal.  Has something changed in your diet, environment, activities, medications or other areas where you could possibly be exposed to gluten? 
    • thejayland10
      Thank you for the clarifcation, how can I get to the bottom of this as to why they may be elevated even on a super strict gluten-free diet? 
×
×
  • Create New...