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
Rachel--24
Posted

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
ShayFL
Posted

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
georgie
Posted
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
mslee
Posted

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
mslee
Posted

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
Amber M
Posted
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
ShayFL
Posted

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
georgie
Posted

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
mslee
Posted

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
ShayFL
Posted

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
mslee
Posted

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
Magician
Posted

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
ravenwoodglass
Posted
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
Magician
Posted
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,338
    • Most Online (within 30 mins)
      7,748
    jojocle
    Newest Member
    jojocle
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Neurologic symptoms - Muscle Twitching and Hand Tremors

      By cristiana · Posted

      I'd like to second supplementation.  Around the time of my diagnosis and for a good while afterwards I had twitching muscles, including my face, as well as pins and needles and numbness.  We do have tremors in my family anyway, regardless of being coeliac, so I can't really comment on that. If you can find out where you are with your iron levels and B12, that's a good start.  I am not sure where you are posting from but in the UK normal lab results for B12 are quite a bit lower than in other countries, so you might find if you are borderline you will get some improvement by continuing to supplement that.   I found taking magnesium also incredibly helpful against facial twitches. I don't know about you, but all these symptoms increased my anxiety levels as I was worried about them.  That only served to make the symptoms worse.  So it might be worth looking into addressing any underlying anxiety issues.   I still notice that if I'm nervous, or worried, my blood sugar levels are down, some of the symptoms comes back temporarily.  It's like there is still a bit of a weakness there.
    • knitty kitty
      SkinSafe

      By knitty kitty · Posted

      Hello, @Itsabit, Your journey sounds very similar to mine.   I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins.  Nutritional deficiencies go along with Celiac Disease.  Blood tests are not accurate measurements of deficiency states.  The body robs stored vitamins from organs to circulate in the bloodstream to supply the brain and heart.  You can have deficiency symptoms before blood levels change. I have a hypersensitivity to sulfites, so much so that I had to switch my toothpaste to one that doesn't contain Sodium Lauryl Sulfate.  SLS can cause oral irritation as a side effect, too.   My mouth would burn and I avoided certain foods.  Dapsone contains sulfites, as do antibiotics.  Treatment with sulfites can precipitate a Thiamine deficiency disorder because sulfites cut thiamine in two making it useless. https://pubmed.ncbi.nlm.nih.gov/35506963/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10506142/ I have an allergy to nickel, also.  Zinc helps keep other metals in balance in the body.  Zinc is also terribly important to skin health and oral health. https://pubmed.ncbi.nlm.nih.gov/8445075/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11274920/ https://pubmed.ncbi.nlm.nih.gov/1977254/ Thiamine (Vitamin B 1) deficiency disorder symptoms and altered thiamine metabolism can occur after radiation or chemo.   Thiamine and Niacin B 3 are important in nerve conduction.  When I was very malnourished, I had paresthesia that made me feel itchy all over, and made my dermatitis herpetiformis extremely unbearable.  The form of Niacin that causes flushing, Nicotinic Acid (not the same as nicotine in cigarettes) is beneficial because the flushing helps open the small capillaries in the skin which allows the antibodies to be cleared and disposed.  Pellagra can occur in Celiac Disease.   I had it, and my doctor didn't properly diagnose it, either.   I had a rash around my neck, Casal's Necklace, along with a blistering rash on my arms and any skin exposed to the sun.   https://pubmed.ncbi.nlm.nih.gov/8445075/ https://cgp.iiarjournals.org/content/10/4/169 https://pmc.ncbi.nlm.nih.gov/articles/PMC11722086/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6780714/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10229844/ https://pubmed.ncbi.nlm.nih.gov/1977254/ You should be checked for more than just B12 deficiency.  The eight B vitamins work together, and we need more of them when we're trying to heal.  They are water soluble, so the body can easily excrete them if not needed. Have you had your Vitamin D level checked?  Vitamin D regulates the immune system and lowers inflammation.   I hope you can find some benefit from my experiences.  Keep us posted on your progress.   P.S.  When trying not to itch the dermatitis herpetiformis, if you press gently on a large area (press with your whole hand) above the itchy spot, the itchiness goes away.  The bigger area of stimulation drowns out that one jangling dermatitis herpetiformis itchy nerve in the brain. For skin care products, I use tallow balm which is absorbed better into the skin than petroleum products or plant products.  Tallow balm (Vintage Traditions is my favorite) helps my Dermatitis Herpetiformis spots look and feel better quickly.  Tallow soap and olive oil soap is beneficial as well.
    • knitty kitty
      What should I do with these test results?

      By knitty kitty · Posted

      Hello, @Jack Common, I know how frustrating health mysteries can be. Perhaps you're having a reaction to the medication you were given for the giardiasis you mentioned in another post. The giardiasis infection would account for the high Igg results.  Have you been reinfected? The site I've linked below has lots of information about the long term consequences of being treated with a medication frequently prescribed for giardiasis infection.   https://hormonesmatter.com/metronidazole-toxicity-doctor-denial/ https://hormonesmatter.com/?s=metronidazole https://pmc.ncbi.nlm.nih.gov/articles/PMC3870550/ Please let us know if your symptoms may be due to this reaction to the prescription for giardiasis. Best wishes.
    • knitty kitty
      How many grams is there in one slice of wheat bread?

      By knitty kitty · Posted

      Hello, @Jack Common, I know how frustrating health mysteries can be. Perhaps you're having a reaction to the medication you were given for the giardiasis. The giardiasis infection would account for the high Igg results.  Have you been reinfected? The site I've linked below has lots of information about the long term consequences of being treated with a medication frequently prescribed for giardiasis infection.   https://hormonesmatter.com/metronidazole-toxicity-doctor-denial/ https://hormonesmatter.com/?s=metronidazole https://pmc.ncbi.nlm.nih.gov/articles/PMC3870550/ Please let us know if your symptoms may be due to this reaction to the prescription for giardiasis. Best wishes.
    • Itsabit
      SkinSafe

      By Itsabit · Posted

×
×
  • Create New...