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Doctor Ordered Mri Of Brain

MyMississippi

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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.

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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.

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  • 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:

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& 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!

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      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
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      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
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      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
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