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

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

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.