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Mri Abnormalities

AMom2010

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AMom2010 Explorer
AMom2010
Posted

I am having the celiac panel done later this week, I am really hoping celiac disease is the answer. I was previously evaluated by a neurologist last fall (both my mother and aunt have MS). I had him send me the medical records and his diagnoses upon the intial evaluation were 1) incontinence 2) paresthesia 3) ataxia

After my MRI, lumbar puncture (which was negative for MS), and electrodiagnotistic exam the diagnoses were 1) urinary incontinence 2) abnormal brain MRI 3) tarsal tunnel syndrome

My bladder control issues have really improved (I had a baby 14 mos ago, vaginal birth). He explained my MRI showed 2 or 3 lesions (I can't remember) but there weren't enough lesions to be considered MS. The tarsal tunnel is the equivalent of carpal tunnel in ankles. Paresthesia is the medical term for pins and needles/tingling sensation. Ataxia is trouble with balance, which I have read celiac disease can cause.

He noted "Cranial MRI negative for MS though a couple of T2 abnormalities were noted". Does anyone know what T2 abnormalities may be indicative of? What does this mean?

Thanks for any insight!

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cahill Collaborator
cahill
Posted

I am having the celiac panel done later this week, I am really hoping celiac disease is the answer. I was previously evaluated by a neurologist last fall (both my mother and aunt have MS). I had him send me the medical records and his diagnoses upon the intial evaluation were 1) incontinence 2) paresthesia 3) ataxia

After my MRI, lumbar puncture (which was negative for MS), and electrodiagnotistic exam the diagnoses were 1) urinary incontinence 2) abnormal brain MRI 3) tarsal tunnel syndrome

My bladder control issues have really improved (I had a baby 14 mos ago, vaginal birth). He explained my MRI showed 2 or 3 lesions (I can't remember) but there weren't enough lesions to be considered MS. The tarsal tunnel is the equivalent of carpal tunnel in ankles. Paresthesia is the medical term for pins and needles/tingling sensation. Ataxia is trouble with balance, which I have read celiac disease can cause.

He noted "Cranial MRI negative for MS though a couple of T2 abnormalities were noted". Does anyone know what T2 abnormalities may be indicative of? What does this mean?

Thanks for any insight!

T2 refers to the type of imaging you had (MRI)

T2-weighted MRI

Main article: Spin-spin relaxation time

"T2-weighted scans are another basic type. Like the T1-weighted scan, fat is differentiated from water - but in this case fat shows darker, and water lighter. For example, in the case of cerebral and spinal study, the CSF (cerebrospinal fluid) will be lighter in T2-weighted images. These scans are therefore particularly well suited to imaging edema, with long TE and long TR. Because the spin echo sequence is less susceptible to inhomogeneities in the magnetic field, these images have long been a clinical workhorse."

When I had imaging done there were white spots (for lack of a better description) on my brain.Testing for MS (spinal tap ) was done and came back negative. The diagnosis (at the time )was the white spots were a result of (caused by?) my migraines .

Later I was diagnosed with gluten ataxia .

Marz Enthusiast
Marz
Posted

Definitely could be gluten intolerance, especially since MS runs in the family. Seriously - so 2 lesions are "not enough" to diagnose MS? It's not like lesions are normal right?

Anyway, even if the celiac panel comes back negative, I'd highly recommend you try out a strict gluten-free diet for a few weeks, if not a month or so, to see if it helps with the ataxia and other issues. Neurological problems do take longer to clear up than stomach issues, but you may see an improvement early on that will encourage you to try the diet for longer.

You can also try a gluten challenge after a few weeks, if you're feeling better, and see if symptoms come back.

That's the "old-fashioned" way of diagnosing gluten intolerance. To be honest, the bloodwork doesn't always pick up certain gluten intolerance issues, especially the neurological ones. They're aimed at celiac disease, which is a highly specific form of gluten intolerance where gluten antibodies target the intestine. If you feel better off gluten, that's enough proof to never eat it again!

Roda Rising Star
Roda
Posted

Maybe Raven can chime in. I thought she had abnormal lesions show up on an MRI and they were caused by gluten. Might want to get your mother and aunt tested for celiac too.

ravenwoodglass Mentor
ravenwoodglass
Posted

If the lesions are white lesions they are called UBOs or unidentified bright objects. In MS the lesions surround the myelin sheath. In gluten ataxia they are scattered in different places. Those UBOs, in a bit more celiac savvy countries, are diagnostic of celiac disease that is attacking the brain. If my neuro had known this I would have been diagnosed years before I was. Since he didn't I continued to get worse for another 5 years and it took many more years to recover than it likely would have if he had diagnosed me when they were found instead of shrugging his shoulders and telling me they meant nothing.

After you are done with all celiac testing do go gluten free. The parasthesias may get some relief from sublingual B12. In my case it took about 6 months gluten free before I really noticed a difference in my ataxia but I had gotten to the point where I couldn't walk unaided and had a great deal of trouble with speech before I was finally diagnosed. You may notice some difference sooner but be patient. It takes time for the damage to progress and it takes some time to heal the nervous system.

cahill Collaborator
cahill
Posted

In addition to going gluten free,I would also encourage you to be cautious of Soy.

My reaction to soy is neurological with a bit of C (constipation)

AMom2010 Explorer
AMom2010
Posted
  • Author

Thank you all so much for the wonderful, knowledgable advice!

I have other GI symptoms too. These days it's more constipation, with only occassioanl D. In college I suffered tremenduosly with D regularly until I was at least 25. It was always worse after eating a fatty meal. The last time I had a dish made with cream was at a fancy steakhouse 3 years ago, let's just say before we left my meal had been rectally deposited in the toilet completely undigested (sorry for the TMI). GI symptoms have really improved, I am very careful about what I eat based on bad past experiences, although my diet does still include gluten. Both my maternal grandparents and aunt (the one with MS) have had their gallbladders removed. I've been reading gallbladder disease can be secondary to celiac disease. My grandmother was also always aniemic. Most of my family has GI problems... My younger brother has schizoaffective disorder along with lots of tummy trouble. I have struggled with severe anxiety, bordering on OCD. It all just seems to fit :huh:

What do ya'll think about all my symptoms - gluten intolerance or celiac???

I am now 32, and I was first seen by a neurologist when I was 19, with pretty much the same outcome as the most recent experience...

I would really like to try the gluten-free diet, but I am so worried people (friends and in-laws) will think I am absolutely nuts. Oh well, I guess I need to get over that.

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AMom2010 Explorer
AMom2010
Posted
  • Author

I forgot to add that I have defective tooth enamal, brain fog (oh my gosh it's bad), crazy bad itchy breakouts all over my body (they aren't blisters though), and keratosis plaris. I am also 20 lbs overweight, no matter what I do I can't loose the extra weight. I have twice lost the weight, but it was during my chronic D years...

I am beginning to get gray hair, although I know this isn't a celiac disease symptom, it would be nice if going gluten-free would make the gray go away too, lol!

mushroom Proficient
mushroom
Posted

Welcome to the board, Amom2010. Every symptom you mention is highly suspicious for celiac disease. In fact I would be amazed if your tests were not positive. However, just one word of caution: some whose symptoms are primarily neurologic for some reason do not test positive, so if yours come back negative do not believe that your problems are not caused by gluten. Do the diet anyway :)

RollingAlong Explorer
RollingAlong
Posted

Did you see this recent study on celiac disease in patients with MS AND their first degree relatives?

Open Original Shared Link

AMom2010 Explorer
AMom2010
Posted
  • Author

Yes, Rolling Along, I did see that study and it is what made me look into celiac disease as a cause for my symptoms. I came accross this site while looking for answers for my daughter's steatorrhea. She's 14 months old and had D for a month. I am seriously going to get a plastic shower curtain to put under her crib, it's that bad. Once I began reading about celiac disease I became CONVINCED I have it and that she does as well. Her celiac bw was negative btw. We were referred to a pedi GI and she wanted me to get tested too as she mentioned the bw is useless in little ones.

Mushroom, you mentioned that people with neurological symptoms commonly don't test positive. Were you referring the the bw, biopsy, or both? Just curious.

Thanks!

mushroom Proficient
mushroom
Posted

I was referring to the blood work, since most doctors won't do the biopsy with negative blood work. It may also be true of biopsies, which are measuring the GI damage, not damage to the rest of the body from gluten.

AMom2010 Explorer
AMom2010
Posted
  • Author

One more question for all of you (you are so smart)!! Who gives you a diagnosis of gluten ataxia, a neurologist or GI? How exactly is GA diagnosed if bloodwork is negative?

My neuro wanted to follow up with me in Feb, but I never made an appt because nothing had really changed. He also wanted to do another MRI in a year to see if the damage was progressing. This is going to get expensive as we have a awful high deductible plan, have to pay 5000 out of pocket before ins. kicks in. I'm so confused as how to proceed.

ravenwoodglass Mentor
ravenwoodglass
Posted

One more question for all of you (you are so smart)!! Who gives you a diagnosis of gluten ataxia, a neurologist or GI? How exactly is GA diagnosed if bloodwork is negative?

My neuro wanted to follow up with me in Feb, but I never made an appt because nothing had really changed. He also wanted to do another MRI in a year to see if the damage was progressing. This is going to get expensive as we have a awful high deductible plan, have to pay 5000 out of pocket before ins. kicks in. I'm so confused as how to proceed.

Symptoms and their relief on the diet and the UBO's on an MRI would be what is used for diagnosis. It would be diagnosed by a neurologist but not all are familiar with it.

Once you have been gluten free for a while the ataxia should get some relief. Something that may help you recover quicker is a script for a few visits with a physical therapist. Your GP might be willing to give you one and if the GP knows of your balance issues you could try calling the office and speaking with a nurse to see if the doctor will call in the script to the PT's office so you can avoid the doctor's copay for a visit.

cahill Collaborator
cahill
Posted

One more question for all of you (you are so smart)!! Who gives you a diagnosis of gluten ataxia, a neurologist or GI? How exactly is GA diagnosed if bloodwork is negative?

My neuro wanted to follow up with me in Feb, but I never made an appt because nothing had really changed. He also wanted to do another MRI in a year to see if the damage was progressing. This is going to get expensive as we have a awful high deductible plan, have to pay 5000 out of pocket before ins. kicks in. I'm so confused as how to proceed.

My neurologist diagnosed me with ataxia awhile back but did not make the gluten connection until after I was diagnosed with hashimotos and celiacs and I had a lot of my symptoms resolve after going gluten free.

I still have not been able to convince them ( my GI and Neurologist) that soy also causes neurological symptoms for me. <_< ,,

If your blood work comes back positive for celiacs your neurologist needs to have that information,( with the hope he/she is more informed than most .)

Either way I would encourage you to go gluten free after your testing is completed.

AMom2010 Explorer
AMom2010
Posted
  • Author

UPDATE: The nurse called today with my results and the celiac panel was negative, everything was in the normal range... :huh:

I am really kind of bummed out, I was just positive that it would be positive and that I would go gluten free and see my symptoms improve. It would sure beat the heck of an MS diagnosis. I talked with my husband about it and I've decided to give the gluten-free diet a shot anyway, if the end result is the same (improvement) who cares if I have an official diagnosis. The Dr. also tested my B12 (normal) and Vit D, which was low (33). So he wants me to start taking Vit D supplements. Ugh...............

Takala Enthusiast
Takala
Posted

Hi, didn't catch this thread earlier.

I'm another one who ended up with the "bright spots" or brain lesions, complete with the neuro from hell

ravenwoodglass Mentor
ravenwoodglass
Posted

UPDATE: The nurse called today with my results and the celiac panel was negative, everything was in the normal range... :huh:

I am really kind of bummed out, I was just positive that it would be positive and that I would go gluten free and see my symptoms improve. It would sure beat the heck of an MS diagnosis. I talked with my husband about it and I've decided to give the gluten-free diet a shot anyway, if the end result is the same (improvement) who cares if I have an official diagnosis. The Dr. also tested my B12 (normal) and Vit D, which was low (33). So he wants me to start taking Vit D supplements. Ugh...............

Glad to hear you are going to go gluten free anyway. It may take some time to see improvement. Some of us just never show up on blood work for some reason. If I had kept listening to the doctors who said 'celiac tests are negative so just get more fiber (wheat) and keep taking your tackle box full of meds' I would be dead by now. Also if your doctor uses the 250 level for the low end of the B12 range, and hasn't compared your number to previous tests to see if your levels have been slowly dropping over time it would be a good idea to take some sublingual B12.

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