ID-100122591

My, Oh My, Peripheral Neuropathy

I spent a good chunk of last Christmas Eve in an MRI scanner, getting my spine analyzed for the white matter lesions of multiple sclerosis (MS). Mike, the MRI technician, piped George Winston’s “December” CD through my MRI headphones, but the music did little to drown out the loud hammering sounds of the MRI and the thoughts that were racing in my head. I prayed and bargained while I was in the scanner, with thoughts such as, “If I do have MS, please let it be relapsing-remitting and not primary progressive,” and, “If I am going to become disabled from MS, please let it happen after my 4 babies have been raised and are out of the house.”

I developed a peripheral neuropathy (nerve damage) last fall, about 2 and a half years after going gluten free for my Celiac Disease diagnosis. In September 2012 I felt better than I had in quite a while and was training for my first half marathon after having Claire in March. Then, the first week of October, I had a pretty bad “glutening” episode (thanks to Trader Joe’s) which took me quite a while to bounce back from. Two weeks later, while visiting family in Boston, I developed persistent numbness and tingling in my hands, feet, tongue, and right upper lip, followed by extreme fatigue and difficulty concentrating/lapses in my short term memory. I went to see a neurologist after my symptoms had persisted for about a week and a half. My full neurologic exam at this point was unremarkable. My brain MRI was normal. I was evaluated for Lyme Disease, lupus, diabetes, sarcoidosis, and several other autoimmune and vascular diseases. My Vitamin B12 and copper levels were normal. My thyroid function was assessed (I have Hashimoto’s Disease and take daily levothyroxine) and everything thyroid-wise was normal as well. My neurologist told me that based on recent research, as well as in his experience, Celiac Disease is the third most common cause of the development of a peripheral neuropathy, behind diabetes and alcoholism. He told me that if my neuropathy was indeed Celiac-related, that it should resolve in 3-6 weeks. And it did. I was out running one day and I finally felt like my feet were back to normal after weeks of running with numb feet (which, looking back, probably wasn’t the smartest thing to do!)

We took all gluten out of our home at this point to avoid exposing me to any inadvertent gluten cross-contamination. I stopped eating GF processed foods entirely. But then Thanksgiving came, and I know that I got a hit of gluten somewhere, and about one week later my neuropathy returned to me. I was in the middle of watching my daughter perform in a Christmas ballet routine with Martina McBride and I had a sudden onset of numbness in my hands, feet, tongue, and upper right lip. Again, the symptoms lasted for days which turned into weeks. I returned to my neurologist and he ordered the rest of the testing for multiple sclerosis: a retinal exam to look for optic nerve thinning, visual evoked potentials, and the Christmas Eve spinal MRI, all of which were normal. The numbness and tingling slowly resolved and were gone by New Year’s. I was grateful to not have MS.

Since December, I have had the neuropathy symptoms return only twice, once in January and once in July. They have both occurred after traveling, the only time that I am really ever taken out of my gluten free home (aka safe haven) and been exposed to cross-contamination. Fortunately,  for reasons that are still unclear to me, my neuropathy symptoms lasted just days, instead of weeks, these last two times.

I started this blog last fall as a way of coping with my new neurologic symptoms from Celiac Disease. I had truly under-appreciated the effects that small amounts of  gluten cross-contamination could have on my body until I developed the peripheral neuropathy. Although I did write about the neurologic effects of gluten last fall (see link), I was not prepared to share my personal experience until now.

In conclusion, many patients with Celiac Disease will go on to develop peripheral neuropathies, even while on a gluten free diet. If you have Celiac Disease or non celiac gluten sensitivity and develop symptoms of a possible peripheral neuropathy, please be evaluated by a neurologist to make sure that something treatable, such as a vitamin deficiency or Lyme Disease, is not going on.

For more information on Celiac Disease and peripheral neuropathy, please check out the following links:

1. Peripheral Neuropathy. National Foundation for Celiac Awareness. Accessed 9/10/2013.

2. Celiac Neuropathy.  The University of Chicago Celiac Disease Newsletter. Spring 2010. Accessed 9/10/2013.

3. Chin, R. and Latov, N. Peripheral Neuropathy and Celiac Disease. Current Treatment Opinions in Neurology. 2005; 7: 43-48.

45 thoughts on “My, Oh My, Peripheral Neuropathy

    1. Jess Post author

      Hi Tracy,
      Thank you.
      Do you also have Celiac Disease? Does your neuropathy come and go or is it persistent? I look forward to checking out your page!
      Jess

  1. Vik

    Jess, thank you for writing about this topic. What a swell last Christmas Eve you had. Not. (Which was the same day I had the test that coincidentally led to the diagnosis of celiac.) I did have an MRI over a decade ago for the same reason you did, and like you was relieved that it was not MS. No ideas from the doc at the time what it was though. Here is what the doctor recommended: go get a hobby so I wouldn’t be so anxious about it.
    I’m glad to hear that your latest episodes were of a shorter duration. That cross-contamination thing, argh. If I could, I would take ALL my food with me when I travel.

    1. Jess Post author

      Hi Vik,
      I think the fact that we both had medical testing on Christmas Eve must mean that we were supposed to connect with each other!
      Did you get a hobby? My hobby is running, which was extremely challenging to do with numb, tingly, and burning feet…My favorite advice from a doctor is still from the GI doc who I saw during college who told me to eat whole grains and get psychiatric help for my irritable bowel syndrome.
      Thanks for stopping by my page. I hope that the transition is getting smoother for you. Thanks also for introducing me to your friend Stephanie’s page!
      Jess

  2. Jen M

    May I ask what it was from Trader Joes that ended up being contaminated? I’ve only recently starting trusting them again and after reading this am second-guessing that.

    1. Jess Post author

      Hi Jen,
      It was their Three Cheese Pomodoro sauce. I had eaten it multiple times without an issue. It is on their “no gluten ingredients” list and does not have a “made on shared equipment with wheat” disclaimer on the jar. We made it with GF rice pasta in a gluten free pot and I developed almost immediate GI symptoms after eating it (I am the only Celiac in my family and my husband and kids all ate the same meal without any symptoms). I contacted Trader Joe’s and found out from them that it this sauce is indeed made on shared equipment with wheat containing products. I no longer eat any boxed or jarred foods from Trader Joe’s.
      Jess

  3. Bonnie Helzer

    Thank you for sharing. This was the last symptom that developed prior to my going gluten free and it took a while to get better. I do also have recurring symptoms which I now know must mean I am dealing with being glutened. From you symptoms, i consider myself lucky that it is just in the ends of my feet. So hard to be safe 100% of the time. I have resolved myself to always be the Party giver on holidays so that I prepare ALL the food and know that it is safe.

    1. Jess Post author

      Hi Bonnie,
      Thank you for stopping by and sharing your experience. I am so amazed by how individual all of our neuropathies are…different parts of the body, different intervals between ingestion of gluten and onset of symptoms, etc. I interacted with one women who has an almost immediate onset of her numbness, mine takes almost a week to kick in.
      I agree with you that it can be much easier to be the hostess. I have gotten in the habit of bringing 1 or 2 dishes with me to every event that I can, so that I can be sure to be able to eat safely (I just always make sure that I plate it up first so that people don’t cross contaminate my GF dish(es) if a buffet is put out).
      Jess

  4. Martin

    I had a minor gluten and dairy triggered neuropathy and and my experience was that while on gluten free diet it always came back after inadvertent gluten ingestion. What helped was going to an autoimmune paleo diet that helped heal the intestinal mucosa, be prepared for a lengthy process though – complete disappearance of food allergies took over 6 months.

    1. Jess Post author

      Hi Martin,
      I find it interesting that the paleo diet has helped your neuropathy. What I did not mention in my post is that I did cut almost all dairy out of my diet in January 2013. Although I had attributed the improvement in my neuropathy to minimizing inadvertant gluten cross-contamination in my household, perhaps the decrease in dairy has also played a role.
      I did try to go the full Paleo route in February and I really struggled with keeping weight on as I lost my appetite and never felt hungry. I am not sure if others have experienced this. So I found a happy medium in which I keep my diet dairy and grain light (and soy and sulfite free), and it is working well for me, at least for the time being!
      Jess

  5. Cherish

    I came across this blog post, and I thought it was rather interesting as you’d mentioned that soy was a trigger for you. I’m not clear on all of the chemistry aspects of what he’s discussing, but it seems like it jives with some of the things I’ve been reading and that you’ve mentioned in your posts. I’d like to get your take on it. (Yeah, it was written by a vet, but apparently he thinks this applies to people, too.)

    http://dogtorj.com/what-is-food-intolerance/gluten-vs-glutamate-vs/

    Incidentally, I found that potatoes (both regular and sweet) are a good thing to eat that most paleo people tend to shun. I lose my appetite, too, but for me, that’s a good thing. I know that my weight stalls out when I eat them, so maybe they’d help you to not lose?

    1. Jess Post author

      Hi Cherish,
      Your comment did not need to go through moderation, since I’ve approved your posts in the past, so I somehow missed it and am just seeing it now! The article about glutamic acid-glutamate is interesting, and makes me wonder if some of us may have this going on in addition to Celiac Disease (sort of like how I think some of us also have mast cell activation disorder going on as well). Research about gluten-triggered neuro symptoms is really lacking, but the author’s hypothesis does make sense. I’ll let you know if I come across any other papers on the topic.
      As for sweet potatoes, I love them and ate them throughout my entire last pregnancy with Claire and I use them to carb load before running too. I am always open to suggestions for recipes to include them in. I usually bake or microwave them or make them into fries.
      Jess

  6. Lisa

    I have found very little on this topic. Thank you for sharing.

    I think the doctors my husband goes to think he’s nuts when he tells them that within minutes of eating he gets stabbing pains, muscle twitching and/or numbness. I don’t know if he’s reacting to gluten or to many of the other things he can no longer tolerate. He can not eat: dairy, soy, beef, chicken, pork and corn.

    We are not a G Free house. I think we are headed in that direction though. My children have multiple food allergies and a limited diet already. I thought I was being vigilant with my husband, but that may not be the case.

    Thanks again for sharing!

    1. Jess Post author

      Hi Lisa,
      Your husband is definitely not nuts! I have interacted with quite a few others who also have a Celiac Neuropathy, including a doctor who has Celiac Disease and gets the neuropathic symptoms immediately after being exposed to gluten (similar to your husband).
      If you do decide to make your entire home GF, and your husband’s symptoms improve, that may help to answer the question of which foods are causing his symptoms. Also, if he is drinking coconut milk or almond milk, another thing to beware of is carrageenan (I’ve been finding it with increasing frequency in milk alternatives and it causes inflammation and, I believe, is dangerous for those of us with Celiac Disease).
      Jess

      1. Virginia

        Hi Jess,
        Lisa’s post is the first to mention twitching in this thread, which is something I have that comes and goes. Are twitches lumped into peripheral neuropathy or does that just mean numbness and tingling?
        I seem to notice it is much worse if I have a lot of soy like I did yesterday in a Starbucks coffee. I will admit I’m basically a half-effort gluten free gal, probably due to being in some kind of denial. I don’t eat gluten on purpose, but will eat things that say they used shared machinery or that say there may be traces. I think I’ve probably been glutening myself since going on the diet two years ago. Interestingly like you, I did not see the muscle/neuro symptoms until being on the gf diet for over a year.
        Thanks for sharing your stories!
        Virginia

        1. Jess Post author

          Hi Virginia,
          The neuropathy is from nerve inflammation, so it is usually associated with numbness and tinglng and/or pain. Twitching is usually not a part of neuropathy (although, I have learned from practicing medicine for a while that you can never say that two symptoms are not related). It does sounds like your twitching is triggered by soy or something else that you are ingesting.
          I really wish that I could give you a better answer, but as you can probably tell, I am just trying to figure all of this out too. I am thankful that there are many of us who are able to connect and share stories, it definitely helps me to know that I am not alone in being an adult with food intolerances and issues!
          Jess

    2. Andrea Ronertson

      I also have the stabbing pains and itching immediately after eating an increasing number of foods. Did your husband find out the cause or a way to stop the symptoms? I had the symptoms when I was diagnosed with CD but they went away for two years and the returned a year ago.

  7. Diana T

    Greetings,
    I have been having neuropathy. I discovered my numbness was there when on several occasions it went away. It hasn’t been away since I went gluten free about 18 months ago. I keep wondering if it will ever go away again. I have been checked for lymes and vitamin levels have come up since November. I still feel like I am transitioning perhaps it will clear one day.

    Well, if you get to Minnesota let me know. It is so nice to realize that this is not “All in my head.” and other people have experienced it. Home does seem to be the safest place for me.

    1. Jess Post author

      Hi Diana,
      I do hope that your neuropathic symptoms improve. Have you been seen by a neurologist for this? I did not put this in my post, but one of the GI docs who I consulted with a first told me that there was no way that my symptoms were related to Celiac Disease (despite all of the research and evidence showing tha the two problems are definitely related!)
      I will definitely be in MN in 2014 for a race or 2. Are you near the Twin Cities? I would love to meet you in person someday!
      Jess

  8. karen

    Thank you for sharing all your research. Celiac for 3 years( positive biopsy, 125 on tests). Last year I started having celiac symptoms despite what I thought was a pretty strict GF diet. Retesting showed I was still having a gluten response. I keep trying to remain GF but like you it sometimes comes in accidentally. Now have SIBO (treating flares on and off with Xifaxan) and food allergies. I developed all over hives (even in my mouth) for 3 months last spring. Testing for inflammatory disorders ensued with no positive results. Interestingly inflammation score was a 2.

    Skin testing showed food allergies to histamine rich roods(never had this before). Soy, garlic, avocados, nuts, peaches etc. Prednisone and antihistamines reduced the hives a bit. Eliminated all allergic foods from my diet and on the 10th day the hives were gone. Immunologist wanted me to challenge each but I haven’t been able to successfully bring any back in.

    I now have hand and feet pain that appears to be getting worse.. My hands get red, sore and tight as if pressed in a vice. The feet feel like plantar fasciitis. It comes and goes. My GP put me on Curcumax and Glutamine for inflammation. Again my test in May showed a 2. Yesterday I developed a raging UTI ( treating with cipro) which I believe can only be related to these other symptoms. I’m beginning to thinking mast cell activation disorder but I don’t think my drs are aware of it. I need some advice on where to take this. Thinking of going vegan just to get my body to calm down. HELP!

    Suggestions???

    1. Jess Post author

      Hi Karen,
      I am so sorry to hear that you are experiencing all of this. I know from my personal experience how difficult it can be to sort everything out. I am living gluten free, sulfite free, soy free, and dairy light to keep my system in equilibrium and be able to be active and feel well.
      The website for the Mastocytosis Society of Canada has one of the most comprehensive lists of the possible symptoms of Mast Cell Activation Syndrome. Here is the address http://www.mastocytosis.ca/signs.htm.
      From my reading, discussions with others, and the workup that I went through with my own allergist, in order to be diagnosed with MCAS/MCAD you must have all of the following:
      1. Adverse symptoms after being exposed to foods, drinks, odors, and other things that can stimulate your mast cells to degranulate and release histamine (or high histamine foods)
      2. Abnormal lab results after a flare-up of symptoms on 2 separate occasions (elevated plasma histamine and tryptase and or elevated urine methyl histamine)
      3. Symptoms you are experiencing are not from another disorder
      4. Symptoms improve with treatment (first line medication given is usually some sort of antihistamine, such as loratidine). My symptoms improved right away after I started Claritin last spring for hay fever
      I am writing this all from memory right now, but I am going to do a comprehensive overview in one of my upcoming posts. If you Google “Dr. Janice Joneja” you will find a lot of information. “The Low Histamine Chef” has great suggestions for dietary changes to make.
      And you’re right, many doctors are not aware of MCAS because the first case reports were just published in the medical journals in 2007 or 2008. I’ve had the luxury of being able to email back and forth with one of the U.S. experts in MCAS and according to him, this diagnosis is skyrocketing. In Germany, there is pilot data showing that 14% of the population apparently has this problem going on! No one knows what the environmental trigger is, but most of the people who I’ve encountered with it are women with either Celiac Disease or non celiac gluten sensitivity.
      Good luck. I hope that you find answers.
      Jess

    2. Jill House

      Cipro or any antibiotic makes gut leaky and kills good bacteria and food problems get worse. Take a good probiotic and try D mannose for UTI with cranberry instead of cipro, if ciro isn’t working well.

  9. Susan

    I was wondering if you are aware of any tests or information about people who have a gluten intolerance, not necessarily Celiac? Do they develop this type of neuropathy also? My daughter had a negative Celiac test, but has most certainly improved with the removal of gluten. My mother has symptoms of neuropathy and I’m pretty sure would be negative on a Celiac test and then assume that gluten was not the problem. Thoughts?

    1. Jess Post author

      Hi Susan,
      A lot of the early research on non celiac gluten sensitivity (NCGS) has shown that neurologic symptoms in NCGS are associated with elevated anti-gliadin antibodies, which are the antibody that used to be used routinely to test for Celiac Disease. Anti-gliadin antibody testing isn’t used anymore for Celiac diagnosis because there are a lot of false positives (people who have elevated anti-gliadin antibodies but normal bowels on biopsy). But, perhaps those with elevated anti-gliadin antibodies are reacting to gluten, only it may be attacking other parts of the body than the gut (at least that’s my take on it).
      At the ICDS conference in Chicago last month, there was some research showing that there is a type 6 tissue transglutaminase antibody (TTG-6) that has an affinity for the nervous system. TTG-2 is the antibody that attacks the intestines and is what is currently used in the diagnosis of Celiac Disease. TTG-6 may be elevated in non celiac gluten sensitivity as well, but as far as I know, no one has researched this yet! Hope that this makes a little bit of sense. I think that your daughter and mother’s bodies are showing something that future research will hopefully prove is actually happening.
      Jess

  10. Tiffany

    Just happened to see a post about your site on Facebook, and am completely relieved to find this article.
    Diagnosed in 2003 with celiac, 2/ 2013 with Hashimotos, and have been experiencing pain, numbness and tingling in my arms, hands, legs, and butt for over a year. It may come and go a bit, but for the most part I am ignoring 1 symptom or another continuously to make it through each day. I have been chalking it up as just another ‘thing’ that I have to deal with.
    Tomorrow morning is my first brain MRI. I had to pull some strings and actually talked to my psychologist (for OCD) after visiting my primary doctor and was laughed at. My primary told me that nerve damage was just something that happens and, when I told her that I paint for a living she wrote a referral for an upper extremity Ortho. I am frustrated that I have been doing my own research, and scared that this could be a tumor, diabetes, or ms.
    A nerve conduction study was eventually ordered by the Ortho, and that happens next week.
    Since I am the most proactive person in the search for the cause of my nerve issues, what would you suggest my next step be if nothing is found in either the MRI or the EMG ?
    Thanks,
    Tiffany

    1. Jess Post author

      Hi Tiffany,
      I am glad that you wrote. I cannot give you true medical advice on here as we cannot enter into an MD-patient relationship, but I can advise you as a “friend” if that’s okay with you! First of all, it may be worthwhile to get connected with a neurologist at this point, as it sounds like your primary care physician is not being an advocate for you. You may also want to consider getting a new primary care physician who is not going to laugh at your symptoms.
      As for the neuropathy symptoms, as I’ve learned, these are a common neurologic manifestation of celiac disease. I did not know this until I had my neurologic work-up last fall and winter. Some things that you will need to have ruled out (that can cause or contribute to a neuropathy) include multiple sclerosis (MRI of brain and spine, eye exam of optic nerve, visual evoked potentials +/- a lumbar puncture), Lyme Disease (blood test), making sure your TSH and thyroid function is okay, amyloidosis (blood test), electrolyte and vitamin levels (especially Vitamin B12 and Vitamin D).
      There is another condition that I have recently learned about called Mast Cell Activation Syndrome that can also be associated with a neuropathy. I recently found out that I have it and will be writing about it soon, when I can find the time!
      I hope this helps and that you find answers. Once I removed all possible sources of gluten contamination from my household the neuropathic symptoms have only returned after getting cross contaminated while traveling. For me, that is answer enough that it’s Celiac-related (plus I had all of the other disorders I mentioned earlier ruled out). Good luck!
      Jess

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  13. nina

    I just read your post and honestly I feel like I could have written it. As I write I have facial parastesia and prickles in my head and arms that is intermittent . Started with a numb lip 2 weeks ago and then moved to tip of nose and cheeks, waxing and waining , changing place and intensity. Called doctor and they want to ” wait it out”-I have had years of weird neuropathys that have come and gone. Been to the nero with unremarkable findings- no MS/Stroke/Tumor. The odd thing is that I started a diet a month ago that uses SOY Isolate in its products for protein. I am starting to think there is a link here to my symptoms. I also read that soy is bathed is Hexane (sp) a toxic substance that the FDA has approved, but workers who use it have developed polynueropathys among other things. I think I am going to remove all soy as best I can and see if there is an improvement. Thank you for your story.

  14. Sallie

    Just wanted to make a quick comment about your neuropathy. I was dx with Celiac 18 mos ago – had severe neuropathy (among other sx) before dx which almost completely resolved shortly after going gluten free. At that time I also limited my dairy as I thought I may have possible lactose intolerance. After a year I started adding dairy back into my diet and the neuropathy reappeared. I’ve been dairy free for 2 months now and the neuropathy is gone. There were a few times during the first year that I thought I might have been affected by cross-contamination but couldn’t figure out how – I only eat what I prepare and very little processed food – but now looking back I can trace those incidents to times that I had consumed dairy. Now trying to figure out if I’ll ever be able to add dairy back into my life.

  15. Megan

    Can anyone explain why neuropathy symptoms started about 10 days after I went gf in June 2015 & have persisted for the most part all this time? I have Hashimoto’s but not celiac. I was reading how gf diet could be very beneficial since I couldn’t lose an ounce since my Hashi dx & my glucose number was slowly climbing to borderline normal. I have lost almost 30 lbs & 2 clothes sizes but am most happy that my glucose number is normal. However, I have had terribly sleepless nights over these muscle or tendon aches, some twitches and the neuropathy numbness mostly in pinky/ring fingers. I have seen PT who thought it was systemic, been to the ER for numbness, gotten a dose raise on my thyroid med to get those numbers optimal, and added b-complex & magnesium to Vit D supplement. No relief. Have a neuro appt scheduled but it’s at the end of Feb & I am at my wits end about this. Please help with ideas! I am ready to add gluten back.

  16. Diana

    I too have small fiber peripheral neuropathy but no known cause. I discovered I had a gluten sensitivity this past May and then my symptoms (severe itching, severe burning, severe heat and sun sensitivity, numbness, sudden onset of Ranauds, and autonomic issues not to mention a lot of other odd symptoms). I did take gluten out of my diet yet the symptoms got worse and worse and worse. Endless tests culminated with a skin biopsy on Christmas Eve as well. There must be something in the air to cause so many of us to be in doctors office’s or hospitals on the worse day of the year for medical care. I am so much discomfort that some days I want to scream, then on other days I am OK. Any thoughts? I take Gabapentin but it does not seem to be doing much.

  17. Nina

    This has been a really interesting conversation. I also have Hashimoto’s and idiopathic small fiber peripheral neuropathy (mainly burning in my feet). It was sudden onset last summer. I thought it was related to my breaking some toes but now think it might have been due to nutritional changes as we had just moved back to the States from Europe. Last week I started Medifast to lost 30 pounds. It is mainly soy protein and my feet are burning way worse than usual. It never occurred to me that soy could make things worse. I have never had problems with any food group before and now am unsure of what to eat. Any thoughts?

    1. Lorie

      Nina,
      I just read your post and am interested to know if you are still on Medifast and experiencing neuropathy. I started Medifast in January, and had a sudden onset of neuropathy late in April. I have seen a neurologist and so far all tests have been negative yet the pain/weakness is actually getting worse. I never thought it could be from the soy from Medifast, which I am still on. I am now starting to question going off of Medifast to see if my symptoms stop.

  18. Daniel Fuqua

    It appears this post is very old, but I found it desperately googling symptoms as they relate to Celiac disease. I was diagnosed Celiac in 2007 after becoming severely ill and malnourished. I have been on a strict GF diet for years without any significant issues. Last October, I was served wheat pasta by mistake and suffered a severe, reaction unlike anything I had experienced. The next last seven months were pure hell for me. From that day forward, I have suffered from extreme fatigue, muscle weakness, dizziness, brain fog, eye pain, insomnia, heart palpitations, numbness and tingling in hands and feet. I have been to more doctors and had more tests than I ever thought I would in a lifetime. They also diagnosed me with sub-clinical Hashimotos, but the levothyroxine did not seem to help my symptoms. Most symptoms have improved slowly over time, so I gave up with the doctors; however, recently I began to have severe tingling and numbness in my hands and feet. Lately, it has become painful. I was given a brain MRI for MS that was clear. Your experience seems to be similar to mine in that it was triggered by a gluten exposure. Were you ever tested for any thing called AA Amyloidosis? I am looking for anything that might help me point the seemingly clueless doctors in the right direction. Any advice you can share would be appreciated.

    Thank you,
    Dan

    1. Jess Post author

      Hi Dan,

      I was tested for a lot of conditions when I developed the neuropathy, but not amyloidosis (which I’m certain I don’t have because I’m able to associate the development of the neuropathy, and subsequent relapses, with gluten exposures and have no other symptoms that could be connected with amyloidosis).

      My neurologist knew a lot about celiac disease, as it was an interest of his, and was pretty confident that my symptoms could be attributed to celiac.

      I’m not sure if this helps or not, it’s just been my experience. I hope you are able to find answers. Also, did you have an additional testing for MS besides a brain MRI (i.e. optic nerve EPs, spinal MRI, LP, etc)? Because that’s a diagnosis that you definitely would not want to have missed. I had to have everything, except the LP, before I had MS ruled out.

      Jess

  19. Jill House

    Cyrex Lab array 4 is a great test to determine if you have any reaction to the most common cross reactive foods, meaning foods that when you eat them, makes your body think you just ate gluten. Same reactions

    anyone unsure if they have a gluten issue should do array 3 as well.

  20. Tom Murphy

    Hi Jess,
    Thanks for taking the time to design and maintain this website!
    A question I have is what do I do once I get exposed to gluten (I get excruciating electric like shocks in my feet).
    Is there anything you know of that can counter act the gluten once exposed?
    Thanks
    Tom

  21. Lori Stevens

    Hello Jess,
    You seem to be quite the go-to girl! What a plethora of info you and others share, and i thank you!
    Have done all the tests you and others have mentioned and finally diagnosed w idiopathic PN. Grr! Looking at gluten sensitivity per your info and setting up for the diet to give GF a try.
    Question:
    Do you (all) have a confirmed PN diagnosis, ie nerve conduction is verified slow, or do you “only” have PN symptoms? In other words, can gluten CAUSE PN? Do you think?

  22. Sarah

    I was diagnosed 7 years ago with Celiac from my neurologist then officially, from my GI. My only presenting issue was neuropathy: burning sensations, twitching, tingling, and stabbing sensations all over my body, even in my face/head. It was unrelenting. Going on a strictly gluten free diet didn’t improve the symptoms automatically..it took several years for 80 percent of my neurological symptoms to go away. I want to give others hope that THEY WILL LESSEN but it can take time. It was a confusing time since none of the specialists, even those I consulted at mayo clinic, could give me a time frame of healing. I’m glad I came across this website as I have “flare ups” but have not been able to connect it to anything I’m eating. I even had a repeat endoscopy recommended by my GI to confirm my gut was healed (which it was). I’m wondering if I will have these flares due to permanent nerve damage. I also did the Cyrex Cross Reactive Gluten test which basically said I was having an autoimmune reaction to corn, oats, etc. Despite eliminating those from my diet, I haven’t gotten relief from flares. I just want to give others hope that a majority, if not all neurological symptoms to dissipate after a length of time on GF. I’m just trying to pin point the cause of my flares!

    1. Sallie Rivera

      Almost 2 years after I was diagnosed with celiac I was still having occasional neurological issues and so I gave up dairy and they went away. I didn’t consume any dairy for 16 months then slowly added it back into my diet and have not had any neurological issues related to my resumed dairy intake. I still use almond milk as I like that it gives me extra calcium, but otherwise eat dairy routinely without any symptoms.

  23. Shannon Gawell

    I came across your site this morning and I am so glad I did. I spent 8 months with a GI doc trying to find the cause of my GI disturbance. He initially thought it had to do with my gall bladder but after a pill cam, he told me there was damage to the small intestine and I should go gluten free. He did not do a biopsy but autoimmune diseases affect every female on my mother’s side of the family so I am assuming it is Celiac.
    I went GF 2 months ago and it has been such a struggle with my diet. My depression and anxiety have become worse and my neuropathy is worse now than when I ate gluten! I have severe arthritis in L3, L4 and L5 and have had persistent chronic pain in my lower back and both legs with weakness and numbness in both since December 2013. I am now having persistent numbness and tingling in my left forearm and hand (I’m a lefty) to the point where I drop things 6-10 times daily. I have been going to the Ohio State University Comprehensive Spine Center for a few months and have seen a CNP there twice. I am in the process of getting Radio Frequency Ablation to the nerves in my back. I want to set up an appointment with a neurologist there to have some testing to see what is going on neurologically. I feel it is something in addition to my spine issues at this point. Honestly, sometimes when I talk to any of my many doctors and start talking about my symptoms, I feel crazy. I have severe itching on my feet and ankles daily, I sweat profusely with the slightest exertion (my primary doc thinks that is hormonal but I ended menopause in 2012 at age 46) and I feel this is all related to one cause.
    I’m sorry if this makes no sense. It is early and I was just so excited to see your site.

    1. Betsy

      Wow. Thank you for helping me to “connect the dots”; I have had Ideopathic Nauropathy for decades, as well as worsening scoliosis, fibromyalgia, arthritis, and am gfighting cancer. I spent a year on the AIP Paleo Diet (which google; AIP stands for Auto Immune Protocols). The diet reversed all symptoms and I felt great!!! It is interesting to note that neuropathy is just another autoimmune disorder, and so is cancer, and Hashimoto’s…interesting too that the AIP diet is gluten free (and also at first egg, seed/nut/grain, dairy, nightshade free) and designed to heal the gut, which in turn makes the symptoms disappear, and health return. I found this blog today because my neuropathy symptoms have returned, and I had no idea why – I was “well” for so long…but I am also pretty sure I had multiple exposures both to gluten and casein (I actually ate some milk products on purpose, because I have a blood type that is supposed to be able to tolerate milk – and because I crave it- and because I am an idiot.) Now I see more clearly the connection between the neuropathy and the food allergies. I am going to restart the AIP and use a lot of green smoothies; I would urge anyone wiuth celiac to do the AIP for a while, then live on the Paleo diet and forget those GF packaged foods forever! God bless us all.

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