We all know the most common symptoms of celiac disease being mostly digestive symptoms including bloating/gas, bowel changes and fatigue. When I am talking about celiac disease to some people I have had them confuse it for something like lactose intolerance which does have similar symptoms with one big difference.
Celiac disease is an autoimmune disorder – the body attacks itself. There are a lot of celiac disease symptoms related to malabsorption due to the intestines not working correctly and depending on which nutrient and/or mineral the body is lacking in.
I have been reading about neurological symptoms of celiac disease and in one study it found that 10% of people with celiac disease suffer from an associated neurological condition including burning, tingling in hands and feet, the loss of feeling in the hands, feet, or face. It has even been said that the neurological symptoms (gluten ataxia) of celiac disease mimic those of multiple sclerosis and can cause damage to the cerebellum, the posterior columns of the spinal cord, and the peripheral nerves.
What are some of the uncommon symptoms that you or someone you know has experienced related to celiac disease?
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{ 11 comments… read them below or add one }
I have exhibited neurological issues since I was pregnant with my first child (he will soon be 11). My feet have been hot ever since then. I have numbness in my left foot and both hands. I have been told that this could have been damage caused by B12 deficiency … which I was (and anemic) when it was finally figured out that I had celiac disease. I have had nerve conduction tests and EMGs done 3 times; twice when symptoms first started (to rule out neurological disorders) and once recently (10 years later). I had muscle cramping everywhere … when I yawned my neck cramped, when I wrote my arm cramped, when I tried holding mascara my hand cramped. I could not extend any muscle it would cramp as a result of it. I could not point my toes; this would cause instant cramping. Fortunately all symptoms except the numbness have corrected; I have been GF for almost 7 years.
I am so glad the majority of your symptoms have gone away since being GF! I have been reading studies on the neurological symptoms and unfortunately they are showing that most of the neurological damage from celiac disease seems to be permanent. I have met a lot of people with celiac who are saying they have experienced numbness – in toes/feet, hands and face – including myself.
My neurological issues seem to relate to brain stem damage. I have issues with short term memory that did not improve upon a gluten-free diet. I have read that Celiac related memory issues often don't improve on a GF diet. I was hopeful I would kick the trend.
My daughter gets a bloody nose when she comes in contact with gluten – she's had nasty nosebleeds all her life. Last summer, after 2 glutenous weeks she came back to her gluten free home and had a 3 or so hour nosebleed.
Will be getting her tested for Candida too though, as she still has asthma symptoms etc.
Hello to all the sufferers!
I was diagnosed with CD 3 months ago but have had gastrointestinal symptoms (mostly alternating diarrhoea and constipation along with abdominal pains and bloating) for at least 2 years. About a year before the diagnosis I started to get the pins and needles senation, burning and cold senation in my arms and feet and painful chills all over, migraines, fatique. I saw a neurologist then who said after performing an EMG that I had very mild neuropathy on my legs and arms. It certainly didn`t feel like a mild one. Anyways, I was still having all the other GI symptoms that I didn`t find very comforting (saw a GP at least 5 times before they referred me to a gastroenterologist-they kept saying i was too young for any chronic disease, it`s STRESS and reflux). When my Dad was diagnosed with stomach cancer, that was the time when I urge the doctors to finally refer me. And they did. The referral letter got lost but the hospital people told me I had to wait because of the waiting list. I waited for 3 months and then they actually found out they received the letter but it was not scanned or whatever so nobody was going to give me an appointment. My GP had to re-refer so I lost another months before getting the diagnosis. My upper endoscopy only revealed a moderate gastritis and colonoscopy was fine. Then I had a call from the specialist who said the gastroscopy was fine, but the biopsies showed some glutenoenteropathy and atrophy on my duodenum which is typical of CD. I had a blood test then for TTG level, which came back negative. I had another examination called capsule endoscopy that confirmed the diagnosis. I have low ferritin and B12 levels and hypothyroid.
I`ve only started with glutenfree diet 3 months ago and found out that it certainly helped! I love it! My main problem is, that after I eat something with gluten(unintentionally), I will get these pins and needles again. They usually start in my hands, arms and then goes to legs. I get painful joints and am achy all over, can`t concentrate becuase it`s so unpleasant and painful, and if I try to explain to my boyfriend he just can`t relate to what I`m going through. It feels like a poison in my body. Then it goes away after a couple of days, after my body cleans out from gluten. The last time I got glutened was about 5 days ago and still have some tingling…I just wish for this to go away. Does anyone else have the same thing after they eat gluten? I try to strictly follow my diet but surely I keep making mistakes.
PS My lovely Dad didn`t live for long, died almost a year after his diagnosis and I suspect he might have had CD because he suffered from severe diarrhoea (he would go like 7 times a day), bloating and gas ever since I remember but noone would test him for it. I wonder…had he been tested, would he still be with us now?
I pray for everyone to feel 100% again!
Hi, I was just diagonised with G-I borderling CD. Lifestyle change and all really hard. Most family members don’t believe it. Really hard and I am soooo sorry for the loss of your dad.
This is addressed to Eva ‘s problem..had same thing only it began 1 yr on gf diet..just after my neuropathy started going away. I suspected gluten too, but eventually narrowed the pain to hot peppers, and other gluten like symptoms to potatoes & tomatoes. Similar issue with peanut butter, soy and lentils. Also gf Chex and some brands of coffee and tea.
hi eva i am having the exact same issues with pins and needles and its fustrating like did yours go away in the end??? how are u getting on with it now? im awating blood results now myself and kinda started gluten free diet cause when i eat gluten or drink carlsburg it seens to flare up again have the pins and needles now near 3 weeks was going away till i ate taytos and all that shit reply if u can would be great to know thanks
Hi there,
I have had neurological symptoms since the birth of my daughter 21 months ago and have yet to find a doctor who can help me out. I was diagnosed with fibromyalgia in 2009, then diagnosed with a gluten sensitivity days before I found out I was pregnant, but at the time it wasn’t too severe.
Two weeks after she was born I had a migraine with an aura (diagnosed in the ER) and was told I was just stressed. The migraines persisted and even when I didn’t have a headache I kept getting stroke symptoms and visual disturbances that would come and go. At the same time I was suffering from horrible PPD, but was not on medication since I had not been diagnosed yet.
After 3 months I went to a neuro doctor who at the first visit told me I could have MS. I was devastated as a new, severely depressed mom to consider that possibility, but tests quickly ruled that out, and I couldn’t bring my self to keep seeing him.
Since then my gluten allergy has gotten worse to the point of having reactions to trace amounts of it, and my food allergies have expanded to include dairy, eggs, oats, and all chemicals and preservatives found in foods. Symptoms to all that include debilitating migraines, muscle weakness & spasms, GI pain, extreme fatigue, trouble sleeping, trouble focusing, panic attacks, depression, flashing lights, nightmares, and pain on the top of my head. Not like a headache, like a pressure pain that I can feel into my sinuses.
I’m currently seeing a nutritionist/allergist/chiropractor, trying to get my symptoms under control. He’s told me he’s sure I have leaky gut syndrome and some type of autoimmune disease, but as an alternative medicine doctor he doesn’t typically send out for diagnostic tests.
Does any of this sound like CD?? I’ve never been tested, but I have so many of the symptoms and my uncle has it. I’m terrified that it is actually something worse like MS or lupus or Lymes, so please help, but please don’t give me any more ideas of what else it could be :/
Thank you!
Twitter: AccustomedChaos
May 3, 2013 at 8:14 am
Hello
Certainly sounds like it *could* be from celiac disease. I was being tested for a while for MS and it turned out to be all due to celiac disease. I’m a little surprise the test hasn’t been offered to you, especially since someone in your close family has been diagnosed. Do go get tested, it starts with just a simple blood test.
all the best!
It surprises me too, and it’s so frustrating how doctors seem to always start with the worst then work their way back and ignore diet and nutrition all together! :/
Thanks Devan!