Neuropathy & Neurological Presentation

[Spazoid]

Your Brain on Gluten

This is interesting. ..gluten can actually cause UBO's (unidentified bright objects) on the brain that show up in MRI scans. It can also cause "pins and needles" or "crawly-like" feelings all over the body...something a lot of us struggle with. - PH

Your brain on gluten: Should you lay off the gluten before it's too late?

There is reasonable evidence of neurological problems in Celiac disease even those well treated on a gluten-free diet should undergo periodic neurological screening. Peripheral neuropathy is found in almost half of people with celiac disease. Previously, neurological complications in Celiac disease were reported to be as high as 36% or more than a third.

Some unexplained neurological problems are present but not recognized by the patient or their doctor in many patients and some have several problems. Unfortunately, since brain imaging is not routinely done or recommended in those who are newly diagnosed with Celiac disease we don't really know how high these numbers may be really be. More staggering is the fact that we are still learning about people who fail to meet diagnostic criteria for Celiac disease but are being found to have gluten related neurological problems that respond to a gluten-free diet.

The symptoms of neuropathy are paresthesia (numbness) or dysthesia (burning, tingling, heaviness, "pins and needles" sensation"). Many of my patients also describe hypersensitivity of their skin such that they do not like air blowing on them or their children or spouses against their skin. Some admit to "bug crawling" sensation on their skin, something called vermiculation in medical terms but rarely asked about or given much thought by most doctors.

Odd muscle movements under the skin that some call a "bag of worms" medically known as fasiculations are also very common but dismissed by many doctors. My wife, a physician with Celiac disease, actually had these occur while undergoing an EMG (electromyleograph, recording of muscle activity by placing needle electrode into the muscle) exam by an older neurologist. Despite observing these occurring visually and the monitor showing "static like noise" the neurologist dismissed them as "normal".

Many patients with Celiac disease also have what the radiologists and neurologists call "UBO's" on MRI exams of the brain. These unidentified bright objects (think UFO) are white spots that show up on images of the brain. When found in certain locations of the brain they are highly suggestive of multiple sclerosis (multiple scarring spots in the brain). However, though many people with Celiac disease have MS like symptoms and these symptoms often respond to a gluten free diet when started early enough, the UBO's seen on MRI of the brain are typically not in the classic areas of MS. Instead it is common to find them in areas of the brain associated with migraines or balance difficulty (ataxia).

Personally and professionally I have observed all of the neurological complications of Celiac disease and most of them I have also noted in patients in whom I have not been able to confirm Celiac disease but who have what I believe are objective signs and/or genetic risk for gluten sensitivity. I have patients with MS-like symptoms, chronic unexplained neuropathy, headaches, attention difficulties, autistic behaviors and developmental delays who have responded to gluten-free diet but if they had listened to doctors who maintained such a "restrictive, expensive, hard to follow" diet should only be "imposed" on those with a established diagnosis of Celiac disease.

If you have neurological problems get testing for Celiac disease before starting a gluten-free diet. If you test negative for Celiac disease, make sure they test you for the complete HLA DQ genetics that includes the high-risk white blood cell patterns DQ2 and DQ8 for Celiac disease AND get your Celiac disease blood tests include IgG and IgA gliadin antibodies. If your blood tests, including gliadin IgA and IgG antibodies, are negative or normal then consider stool testing for gliadin antibodies in the stool ($99, www.enterolab. com).

The evidence continues to accumulate, though often ignored or missed, that gluten is toxic to some people's brains, even if they do not have Celiac disease. If you do have Celiac disease it is likely you already have neurological problems and may be at risk despite being on a gluten-free diet.

Borrowing from the old advertisement against drug abuse "this is your brain on drugs" maybe we should be getting the word out "this is your brain on gluten". Despite your test results, consider a trial of gluten-free diet after you have your testing done if you have unexplained or unresponsive neurological problems. You owe to your brain. Like my seven-year-old son said to one of our friends, "maybe you should lay off the gluten".

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I don't know what to say...  I have been through almost all of the same stuff.  I get tingling, numbness, in my nose, arms, and legs - sometimes my whole body when I wake-up.  My family thinks it's psycho-somatic.  (I was diagnosed with rapid-cycling bipolar disorer, ADHD and PTSD around age 16 or 17)  So they completely dismiss all my symptoms.  

 

I have 4 "lesions" in my brain which the ER doc seemed very concerned about, telling me to get tested for MS and brain cancer.  My subsequent neurologist did a spinal tap - and I'm clean!  She diagnosed me with paresthesias, ataxia, and headaches...  But she said the lesions are most likely normal or from drug use...  What drug use?!  The pills I was prescribed as a teenager (and have taken religiously ever since)?  I'm 31... The few times I've smoked weed in my entire life? lol!  

 

I ate a bunch of chocolate one night because I was so depressed and woke up the next morning unable to feel my LEGS (completely separate from the weed times)!  I was sleeping elevated.  Then the next morning, as I hadn't assigned blame to the chocolate yet, I couldn't feel the side of my body that I was sleeping on.  Like literally a "harlequin" parapalegic.  So anyway, if you're a celiac - don't eat Ghirardelli - Twilight squares.  The vanilla in there doesn't say what kind of malt they used to produce it...

 

Random "celi" history - I was a little girl/preteen with a big belly and badly bruised legs (the hindered vitamin-K absorbtion)...  High ANA and leukopenia on my blood tests.  Hypothyroid.  Tons of psych pills (prolly not gluten-free binders in some).  Attention probs.  Weight probs.  The aforementioned brain-lesions, and neurological symptoms.  Hand tremors my whole life.  Psoriasis on my face. Eczema on my hands.  Gastroparesis -Unidentified cause.  Peripheral neuropathy (like above). Clicking joints. Popping and snapping sounds in my brain area.  2 knee surgeries.  No cartilidge in one of my knees.  And total ACL replacement in the other.  VertigoBladder issues - totally long time to pee.  Ovarian follicular cysts.  And let's not forget the vomit:  after coca-cola, after cheesy peanut-butter crackers, after smores, and 3 way popcorn. Nausea.  My feces is ALWAYS different.  Missed periods.  Oh yeah, I hallucinated as a child on my flour tortilla and broccoli dinner!  Saw worms on them...  Spent an hour in the bathroom terrified!

 

Soooo, I'm guess after all this s$#&...  Celiac disease seems the likely cause...  BUT, my intestinal biopsy came back negative!  So my fam is just convinced I'm a psycho.  My doctor thinks I have Lupus.  But I feel way better on a gluten-free diet, so he said to keep following it.  

 

Any suggestions aside from the at home test?  (I just don't want the results dismissed by my fam... especially since my Dad suffered colon cancer -and celiac disease is genetic)  Are their gluten ways going to catch up with them, too?  My grandma died of leukemia!  And my Dad's sister just died of breast cancer...  I'm feeling a little panicked that they won't put any stock into my potential celiac disease.  They won't even read the book I highlighted!

 

When will they believe me?  When I'm unable to move?  Or when they are dying of cancer?  Sorry I am rambling, but it should be known that my mom had skin cancer, bad bruises, and is always complaining of constipation.  Oh yeah - she's bipolar too - along with my bro and sis.  Can I throw-up now??!!!

[GF Lover]

Hi Spazoid and Welcome to the Forum.  

 

I have split your post off of the original thread as it was old and you will most likely get more comments with a new Thread.

 

Colleen