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”.
Copyright © 2008, The Food Doc, LLC, All Rights Reserved.
www.thefooddoc.com
References:Del Giudice, E. "Subclinical Neurological Involvement in Treated Celiac Disease: The Dark Side of Gluten-related Encephalopathies" Journal of Pediatric Gastroenterology and Nutrition 2007; 45:290-292.
Dr. Scot Michael Lewey
“Dr. Celiac, the food doc”
www.thefooddoc.com
info@thefooddoc.com
1699 Medical Center Point
Colorado Springs CO 80907
7 comments:
I strongly agree with this. I figured out my gluten sensitvity with the help of Enterolab because I was trying to find something to help my peripheral neuropathy, fatigue, depression and many other symptoms. Going GF 4 years ago has given me back my life. No, actually it has given me a life I never knew I could have. Happy and energetic.
I am concerned about one thing. You mentioned only DQ2 and DQ8. There are other genes that are associated with gluten sensitivity. Not having DQ2 or DQ8 does not rule out a problem with gluten. Enterolab is the only lab I know that looks beyone DQ2 & 8.
Thanks for the article Dr Lewey. I found it rather interesting. I know someone who has issues with gluten commenting about a few symptoms that sounded to me at first to be that of heavy metals in the nervous tissue/brain, something like mercury. It is interesting most that Alpha Lipoic Acid has been found in studies to useful in helping those with Peripheral Neuropathy, this same fatty acid is also useful in getting a heavy metal like mercury to leave the nervous tissues as well.
Thanks,
Mike
I mention DQ2 and DQ8 as the Celiac disease risk genes. Other DQ patterns are associated with non-celiac gluten sensitivity (see my several other articles on this published on ezinearticles.com and at celiac.com e.g). but only DQ2 and DQ8 are thought to be present in almost if not all autoimmune based Celiac disease. Other labs provide complete DQ typing including the Lab at Bonfils in Denver CO (who actually do Enterolab's genetics but only limited DQ2 typing), Labcorp, and Kimball Genetics. The Enterolab genetics unfortunately may be missing some partial DQ2 and DQ8 positive individuals because it appears they only test for and report the beta subunit or dimer and there is an alpha unit that can be present. I will be writing a new update on the genetics of Celiac disease and non-Celiac gluten sensitivity (NCGS) also now called the gluten syndrome by some, especially my colleague from New Zealand, Dr. Rodney Ford.
I look forward to reading the update on genetics - sure can be confusing for me.
You mention the symptoms your patients have had with PN. I had all of those. The only thing I am left with now is some numbness in my feet and fingertips. I am not on anything for pain. I can walk without difficulty.
My feet started to hurt me 40 years ago. I am not sure they will ever feel "normal" because I have done so much damage. Interesting to me is that my younger son who is in his 20's was having problems with foot pain. When he went off gluten all his foot pain disappeared.
Anne
I notice you said nothing about seizures. I have read that a ketogenic diet is sometimes helpful for some who suffer from seizures -- and have always wondered if it is the lack of gluten in this diet that is often what is helpful.
Have you come across any information to suggest that gluten has any role in tumor generation (associated with the brain, as well as other tumors)? I had a sizable meningioma removed, and have a history of many other benign tumors in all kinds of places in my body.
I have reason to believe that a close relative may have died of gluten ataxia -- although the doctors all insisted that he did not have celiac disease or gluten sensitivity, and refused to entertain this as any possibility.
Thank you Dr Scot for an excellent discusion of neuropathy associated with gluten sensitivity.
A recent patient presented with similar symptoms of unusual neuropathies for many years and many previous doctors. Nothing helped. The Neuropathies are exactly as you describe in your article, unusual sensory changes, and were unresponsive to high dose B12 injections..
Although her TTG and EMA Abs are neg, her neuropathy is improving on a gluten free diet, and supplementation with Benfotiamine, a lipid soluble form of thiamine (B1)which is known to benefit diabetic neuropathy.
To read more, click here:
Celiac and Gluten by Jeffrey Dach MD
my web site
Fab. site, I have been told I do not have celiac accordingly to doc.test. But have suffered extreme and various allergies to all grains. How can I have the Enterolab test. I am in the U.K.
If anyone can tell me - please respond. Doctors just look away when I begin to say I have this re-action. Sheila
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