Jump to content
  • 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):

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.

  • 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. - Aretaeus Cappadocia replied to Jmartes71's topic in Dermatitis Herpetiformis
      2

      Skin issues

    2. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    3. - trents replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    4. - nancydrewandtheceliacclue replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

    5. - Russ H replied to nancydrewandtheceliacclue's topic in Introduce Yourself / Share Stuff
      4

      Celiac flare years after diagnosis

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

    • Total Members
      134,046
    • Most Online (within 30 mins)
      10,442

    Urquhart
    Newest Member
    Urquhart
    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

    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
×
×
  • Create New...