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Another study links nerve damage to gluten sensitivity. Gluten has been identified as a potential neurotoxin, and many with gluten sensitivity do not manifest symptoms of classic celiac disease, but instead develop nerve damage. In this study, the average age for nerve damage to develop was 55. A correlation was found between patients with idiopathic neuropathy (nerve damage of an unknown cause) and the presence of gluten intolerant HLA-DQ genes.
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36 Responses
Great post. I’m always looking for great blogs and I really like yours.
I’ve had terrible facial pain for the last 15 years, upper teeth, around the eyes and it’s really debilitating and hard to live with. When I’m gluten free, the pain is barely there, if at all – I just need to stick with it.
Will, I was diagnosed with trigeminal neuralgia about two years ago. My eyes hurt all the time and I had facial pain. It was horrible. I went on gabapentin which helped a lot. I have had migraines for 20+ years also. I had MRIs and the doctors couldn’t come up with a reason for the pain. I always suspected a gluten intolerance but never went GF. The eye and facial pain forced me make the change to a GF diet. It took about 10 months of healing, but I haven’t had migraines, eye pain, or facial pain once my gut and the nerve damage was healed. It took a long time but was completely worth it. I no longer take the gabapentin too, which is amazing (you have to take it three times a day for it to be effective). There have been a couple times when I have accidentally eaten gluten and it never fails…. I get the symptoms back again. And GF isn’t as hard as you would think. I have found many great substitutes.
Will
I have developed debilitating right sided facial numbness, pins and needles and stabbing pain in my face, lips and teeth . I just started a gluten free diet and some other vitamins. How long before you had any relief . I’m at 1 1/2 weeks and no relief. I’m finding myself very discouraged . My neurologist called it idiopathic nueralgia and prescribed gabapentin which I have yet to take . Any thought?
I have numbness and weakness all over left hand side of body including face. Following years of doctor visits I had a blood test diagnosis of celiac, which test has now been lost in m
I am 55 yrs old, a blood test and biopsy diagnosed celiac, 2 years now. Also hypothyroid and psoriatic arthritis. Had an episode of optic neuritis, followed by an MRI of brain. Several lesions discovered, so spinal tap done. Negative for MS. Continue to have neurological symptoms. Now I am wondering if gluten has caused this damage? How would I know? Is is reversible? I am totally GF, only eat what comes out of my GF home. What do I do now?
Phyllis,
It is very possible that gluten did indeed cause your nerve damage. If this is the case, a True Gluten Free diet will possibly reverse the damage. Make sure you watch the first video so that you are eliminating all gluten from your diet.
All the best,
GFS
Is it realistic to suggest that a gluten free diet if embarked upon now can reverse nerve damage that has occurred over a lifetime of 55 gluten-consuming years?
Lisa,
Yes it is realistic. The body is dynamic and has the ability to heal provided you give it the right environment, nutrients, etc. Clinically speaking, we have treated thousands of patients with nerve damage and seen reversal of long term damage. It won’t happen overnight, but it can happen. Keep your hopes up!
All the best,
Dr. O
How long does it take to feel better
I have RSD. I have found a lot of relief when I went gluten free just to support our daughter (age 3) who was going gluten free. Does this mean I probably have celiac or just a sensitivity? My father in law has celiac and we suspect our children do and we assumed this was because of my husband’s genes. Thanks.
Jennifer
Jennifer,
Remember that gluten sensitivity causes many problems (celiac and RSD included). Different people react differently to gluten. Check out this post as it helps delineate the differences:
https://stg-gfsociety-testing.kinsta.cloud/gluten-sensitivity-not-just-for-celiac-disease/
Also, watch this video tutorial on the topic:
https://stg-gfsociety-testing.kinsta.cloud/video-tutorial/gluten-sensitivity-what-is-it/
All the best,
Dr. O
Is it possible for a gluten free diet to reverse atypical facial pain/trigeminal neuralgia? I have tried all the meds…was muscle tested and was told I was gluten intolerant….is there hope?
Pam,
Not only is it possible, it is common to see neuralgia recover in gluten sensitive individuals.
All the best,
Dr. O
Dr. O,
Your comment a few years ago to Pam is encouraging. I’ve had TN for almost 2 years. An allergist diagnosed me with gluten intolerance. Going gluten free, the symptoms disappeared.
However, now 2 months later I have ddifferent symptoms. It’s no longer the shock, but a tapping jg of the nerve, like it flutters hard, along with pressure. Is it possible that pain has come back because the nerve is healing/regenerating? Please email me back. Seeing that post is the most encouraging thing I’ve seen in my research in almost 2 years! Thanks
I was diagnosed with TN in December 2009. I experienced three months of shock pain in my face (primarily the lower two branches of the trigeminal nerve). In March 2010, having nothing to do with the TN, I went gluten free (and have remained so). I’d been struggling with stomach issues for months, I have a sister diagnosed celiac (so I knew there was a genetic component), and I just decided to go for it. Not only did my stomach problems disappear, but — totally unexpectedly — the pain in my face was cut in half within a week of going GF. I experienced three more months of residual facial pain, but it was nothing like the cruelty of the first three months.
In September 2010, the TN flared up again, but I had only a few days of intense shocking, and a total of about six weeks of pain.
Since then, there have been occasional days of intermittent shocks, but nothing lasting. However, five days ago (January 2016), the TN kicked in again. The intensity of the pain is VERY LOW (but still super annoying). It has been pretty constant over the last five days, but it is not increasing in intensity, and I’m not willing to start taking drugs (other than ibuprofen) to deal with it.
Over the years, I’ve wondered: Do I really have TN? (Three neurologists think I do; one neurosurgeon thinks I’m crazy.) Has my TN behaved unusually because I happened to go GF in the first bout? I don’t know. All I know is that my experience of TN has been far less severe than I’d been warned it would be, and I am extremely grateful that I haven’t repeated the initial horribleness of shocking facial pain.
On a side note, I used to get debilitating migraines about 2X per month. In my 6 years GF, I’ve had four migraines, all of them low-grade.
I have dx for gluten sensitivity (double dq1, non-celiac variety), plus positive tests for sensitivity to soy, casein & yeast. I also have a dx for peripheral neuropathy, which started about two years ago. After finding the link between gluten & neuropathy, I’ve been eating gluten free for 5 months and soy, casein and yeast free for about 2 months. Lately I’ve noticed my symptoms for peripheral neuropathy have changed. For the past 2 years I’ve had progressive numbness in my feet, and more recently tips of the fingers. No tingling, more that “altered state” like you’re wearing a sock. Occasionally I’d get those electric shocks up the legs, too. But in the last few weeks I’ve noticed more burning on the bottom of my feet, more shock-like pains in my toes, and my feet are aching much more than they used to.
I’m encouraged by GFS. For one thing, the fact that going gluten free can reverse symptoms is so powerful! I have been tested as not celiac, but SEVERE intolerance to wheat and MODERATE intolerance to gluten/glaidin. When I eat wheat/gluten I get really bad symptoms I call gluten neuropathy 36-48 hours later: dizzy/off balance, left food numbness, tingling, and puffy eye lids!
Sadly, many Dr’s, even natural health Dr.’s blow it off and have even had some perscribe supplements w/gluten/wheat! UGH!
I am a 61-year-old woman who is just now exploring the possibility that I may be gluten-sensitive. My niece and nephew have both tested positive for the genetic indicator, so it would stand to reason that the symptoms that have no relief may be connected.
My question is whether my tinnitus could be just one more on the ever-growing list of chronic issues. I see it in the list above, but wonder how strong the link is. I’ve been dealing with it for a number of years and have been told it is not something that can be treated. GF diet, perhaps?
Hi Lorna,
I have clinically seen tinnitus improve with a gluten free diet in multiple patients. That being said, there are many factors involving this condition, so I wouldn’t declare gluten free a cure all for it. All in all, I would encourage you to go gluten free and send me feedback on how it goes.
All the best,
Dr. O
Thank you for the great article and website. I am trying to figure out the cause of my recent balance/ ataxia symptom. It’s been going on for about a month now, and is only the second time in my life this has ever happened. It happened for a few months last year around this time and just went away, and I never knew what it was or why it went away. Anyway, I have been eating gluten-free for a little more than a year and a half. However, this past Christmas when I was making cookies as presents for my neighbors, I completely wasn’t thinking and ate some of the batter (because that’s what I’ve done my whole life!) Could that have caused this month-long ataxia symptom? I have no idea if it’s gluten-related, I’m just so desperate for answers, I’m analyzing every possibility.
When this happened last year, there was also an incident of having eaten gluten.
Is this possible, even with no previous neurological or balance symptoms?
Thank you for your time and any input/ideas.
Yes. The dough exposure can be behind your symptoms. Small quantities of gluten exposure are known to contribute to lengthy neurological detriment.
All the best,
Dr. O
Doc, long story short of it; 1998 optic neuritis with fatigue/vertigo = MS right? Lumbar and MRI negative.
2000, heart palpitations (not an MS symptom!) with brain fog, numbness in feet. Lumbar and MRI negative.
2002, double vision, vertigo, Miniere’s (left ear) Lumbar and MRI negative.
2010, double vision, Miniere’s (right ear). Lumbar and MRI negative.
2012, fatigue, abdominal pain, diarrhea, tinnitus, blurred vision, extreme weight loss, herniated discs. Lumbar negative, Brain MRI positive for lesions. Given DX of MS. Tested positive for IgE wheat allergy and positive for gluten sensitivity. 7 months after gluten free, endoscopy was negative (wouldn’t it have to be?) but lesions are going away.
I am convinced this was celiac, just not caught by the hospitals or medical staff. Grandfather died from failure to thrive before celiac DX days and my son has tested positive. It is unfortunate, but this seems to be the traditional DX route.
How can I be tested for gluten sensitivity ?
Genetic testing is your best option >>> https://stg-gfsociety-testing.kinsta.cloud/genetic-testing-for-gluten-sensitivity/
I had all-over neuropathy diagnosed as lupus. It was everywhere–hands, arms, feet, legs, spine, trigeminal neuralgia on both sides, plus severe “brain fog.” I was in so much pain, I wasn’t sure how much longer I wanted to live. Naturopath put me on anti-inflammatory diet–no grains, beans, nightshade family (tomatoes, potatoes, eggplant, others), dairy, sugar, and–for me–eggs. She also gave me curcumin to reduce inflammation & high doses of fish oil, accompanied by Vitamin E. The neuropathy started to get better within 2 days, and completely disappeared after about 6 months, except in my finger tips, which took a year and a half to heal. When I eat ANY grains or nightshade family veggies, the symptoms return. If I go off the supplements for over 3 weeks, the symptoms return. I am not a doctor and can’t make specific recommendations, but as an individual, this is what worked for me. You have to be ever-vigilant about foods containing gluten, and you have to keep with it to obtain the longterm results. There is hope!
I also had neuropathy in hands and feet, among some other symptoms such as heart palpitations and pains in chest and back; with little answers. I had an MRI and all sorts of cardio testing and blood work. I had one off thyroid test, but the rest were normal. I have little support from my docs, but after some research of my own, decided to go GF as I thought it may help a potential thyroid issue. After about a month of GF I was back to my normal self. I finally saw a neurologist and she said it could be a gluten related nerve sensitivity since I am now feeling better. However, I was recently on vacation and went off my strict GF diet quite a bit. It’s been about 2 weeks since the vacation, and I had some tingling in hands and feet again, but I am feeling pretty bad now with heart palps and body aches. I just wonder if it could take that long for the symptoms to appear again or if something else is going on. I don’t really know where to go from here as far as physician support. My primary care offers little in support and I just don’t know who to turn to. Everything I have learned about gluten has come from books and online resources and speaking to someone who knows facts and information would be so helpful.
@Korinne. I went gluten free in 2008 after decades of unexplained and undiagnosed health problems. All my symptoms really peaked after the birth of both my children. After going gluten free in 2008, most of my health issues cleared up (but it took 3+ years of being gluten free before most of them resolved) and then going dairy free as well really helped resolve almost every symptom that remained. As someone who is EXTREMELY sensitive to gluten, I feel somewhat qualified to answer your question especially because my children are gluten sensitive as well and we’ve been through a lot regarding this subject over the last seven years.
I never found any doctor that really supported or helped me. My philosophy is this: What other thing could effect you more than something you are putting in your mouth/body five to seven times a day (FOOD)?
The answer: Not much. (Unless you are only some type of daily drug.) When you think about it, the amount of food we consume and more importantly WHAT we consume is the most powerful driver of our overall health and wellbeing. I personally think it’s preposterous for doctors NOT to ask us what we eat every day. They want to know if you are on any medications (and that is a good question to ask) but why don’t they also ask, “What else are you putting into your body everyday, 4-6 times a day (food)?” That answer would probably explain a lot in terms of why people aren’t feeling so good.
After being diagnosed as pre diabetic in 2008 while being 5′ 6″ tall and only weighing 106 pounds, being an active mom of two with NO family history of diabetes, I knew something was seriously wrong. I had come off of a few years of really feeling bad everyday… chronic hives, gum problems (despite always brushing, flossing and going for regular cleanings), joint pain, reoccurring mouth ulcer (more like a painless bubble) in the same spot every month, symptoms of PCOS, sores on finger tips, iritis so bad that I almost lost part of my vision in one eye, sores on the joints of my fingers, extreme fatigue, brain fog, and many other symptoms, all the while having NO digestive issues (which is the most common symptom listed for gluten intolerance/Celiac).
I can tell you from years of experience (and I figured out my health issue on my own without the help of any doctor) that even a little gluten can effect you. If I get “contaminated” with gluten, I can experience symptoms as soon as 24 hours later or they can take up to 1-2 weeks to develop. My daughter’s experience is a little different, if she accidentally ingests any traces of gluten, although her stomach usually feels bad that same day, it can take up to 1-4 weeks for joints to stiffen and for her other symptoms to appear. For her, it is a slower reaction time and this often lead to her not understanding the correlation at first. Mostly because once the damage is done (you get some gluten) it takes months of strict avoidance again before the symptoms resolve and then if she makes another mistake, we’re back to square one again. It’s been a slow process but it’s been proven to her enough times now that she gets it and she knows it will make her sick (she’s a teenager and it’s hard for her in some situations to stick to the restriction).
One thing I do know is this, if you get “contaminated” with even a very small amount of gluten, it can take months to years (6+ months and more) for your body to be cleared of the negative effects and begin to start to heal itself again. I am convinced that my mom’s alzheimer’s is directly related to what her body could tolerate and what it couldn’t. She had every classic symptom of celiac and tested negative for it but no one ever checked her for gluten sensitivity so she continued to eat it all her life. I think the pervasive inflammation from consuming something that did not agree with her body ultimately lead to the destruction and build up of plaques in her brain. One day, scientists with make the connection.
Keep doing what you have been doing. Look for any websites and blogs that deal with gluten sensitivity and celiac. Those are your best bets resources for support, relatable stories, and knowledge on how to deal with the many facets of living a gluten free (healthier) life. Good luck and be strong! It’s worth the sacrifice.
Did the scientists do any Controlled Experiments or Research using totally Organic Wheat Gluten? i.e.) Not contaminated by Round Up, Herbicides, Pesticides,etc. And not from GMO Crops. Also they need to make sure the Wild-Grown wheat crops have not Cross-Bred with any Monsanto GMO wheat that wind or birds may have spread those contaminated GMO seeds….
Hello, I am a 44yr old woman with idiopathic neuropathy, I have been tested for vitamin deficieiency, diabetes, had cat scans, nerve conductions test, etc. And they have not found anything that points towards the neuropathy in my hands and feet. I also have schizoaffective disorder, depression, anxiety and my weight goes up and down all the time.
I am wondering if a gluten free diet will help me? We are looking at getting a referral to a dietician to learn more about a gluten free diet.
Since I am younger then most people in the study I am wondering if I’m on the right track?
Edith
Edith,
Yes a gluten free diet might be very helpful for you.
Read this article on gluten and the brain – https://stg-gfsociety-testing.kinsta.cloud/schizophrenia-and-gluten-sensitivity-is-there-a-connection/
Watch this video on gluten sensitivity – https://stg-gfsociety-testing.kinsta.cloud/video-tutorials/gluten-sensitivity-what-is-it/
All the best,
Dr. Osborne
I am having continual symptoms of tingling in the extremities, muscle pain, tinnitus and visual problems. My allergist said my blood test showed a slight sensitivity to wheat but was negative to gluten. Could I still be suffering from gluten?
I am a celiac diagnosed when i was a baby. I have been on a gluten free diet most of my life but eating oats and corn, i have had rhuematoid arthritis for past 10yrs and recently have terrible muscle wasting and nerve pain in arms legs and hands and only weigh 40kg am 5,1 (seems worse since going grain free?). i am now grain free, dairy and soy free for the past five weeks and hoping it will make a difference but my hands and arms feel very nervy and i was wondering how long you think it might take for my gut to heal or to see a difference am taking probiotics, eating organic paleo and glutamine?
My son has severe CRPS from three serious bike accidents that really wrecked his spine in a few places and has 3 or 4 implants from three super major surgeries . I keep telling him to try going gluten-free for the awful pain he suffers at times, which is so excruciating that people can’t stand to watch! I’m wondering how CRPS symptoms can be lessened by going gluten free. Thank you.