Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Pain In My Arm Again After Getting Glutened. Does This Sound Like A Neurological Symptom?


Sarah8793

Recommended Posts

Sarah8793 Enthusiast

The first time it happened I couldn't tell if it was related to gluten. But now after being glutened and having it happen again I believe it is related. My whole right arm, starting under my armpit and going down into my forearm aches. I don't have any numbness per say. If you have ever put your arm in one of those blood pressure machines in stores and had it begin to ache while waiting for the cuff to loosen, that is kind of what it feels like. It doesn't feel like it is falling asleep, it is more like an arthritic feeling along the entire arm, not in just one joint. It isn't sharp pain. And I have periods of the day when it isn't bothering me. Taking Ibuprofen doesn't seem to make a difference. It kind of freaks me out. About a month ago, I saw a neurologist about a heavy sensation I was getting in my legs and arms (comes and goes along with my period :huh: ) and mentioned the arm thing to him. He didn't blink twice and had nothing to say. After examining me, he said he couldn't find anything wrong and told me to come back in 2 months for a follow-up.

Any ideas?

Sarah


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



clover Rookie

I've only been gluten-free for 3 months and in that time I have had pain similar to what you are describing. It is pretty much the first time I've ever felt that kind of pain & I have read somewhere that arthritic-like pain is a symptom of gluten in the system. Even if it is just another symptom, it's no fun & worries me too. I have spoken to a few people who recommend that I see an acupuncturist. Maybe you could give that a shot too. Acupunture is supposed to do worlds of good for those who have intestinal disorders/intolerances. Good Luck!

plantime Contributor

I had that feeling before. It was caused by immobile vertebrae in my neck. The rest of my cervical spine was trying to compensate, and it was causing pain in my right arm. Stretches worked wonders for it!

As for the heaviness in your legs, I had that when I was taking Lipitor. It seems statin drugs cause a problem with the nerves. I quit the Lipitor, and the heaviness went away. It never showed up on any tests, so the docs don't believe that it was the Lipitor. I know better than that, though.

Sarah8793 Enthusiast
I had that feeling before. It was caused by immobile vertebrae in my neck. The rest of my cervical spine was trying to compensate, and it was causing pain in my right arm. Stretches worked wonders for it!

As for the heaviness in your legs, I had that when I was taking Lipitor. It seems statin drugs cause a problem with the nerves. I quit the Lipitor, and the heaviness went away. It never showed up on any tests, so the docs don't believe that it was the Lipitor. I know better than that, though.

Dessa,

Did you do stretches for your neck or your arm? I'll try anything to get rid of this. Thanks!

Sarah

I have spoken to a few people who recommend that I see an acupuncturist. Maybe you could give that a shot too. Acupunture is supposed to do worlds of good for those who have intestinal disorders/intolerances. Good Luck!

Thanks for the idea. I haven't tried acupuncture before but have often wondered about it.

jerseyangel Proficient

When I first went gluten-free, I would often wake up with that kind of ache in my wrists and hands. It gradually stopped happening.

Sarah8793 Enthusiast
When I first went gluten-free, I would often wake up with that kind of ache in my wrists and hands. It gradually stopped happening.

Interesting. I hope that it is just a matter of time like yours. I have only been gluten free since May, and I have already glutened myself about twice a month since then. :rolleyes:

Thanks,

Sarah

frustratedneicey Apprentice

I have Multiple Sclerosis, so those kind of sensations are the norm for me. But, my neurologist told me that Celiac disease and the reaction to gluten actually causes similiar symptoms, which in my case, makes them twice as bad. But I just wanted to let you know straight from my neurologist, they are normal occurences and I hope your neurologist studies up before you go back again!!! Good luck!!

Denise


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Sarah8793 Enthusiast
I have Multiple Sclerosis, so those kind of sensations are the norm for me. But, my neurologist told me that Celiac disease and the reaction to gluten actually causes similiar symptoms, which in my case, makes them twice as bad. But I just wanted to let you know straight from my neurologist, they are normal occurences and I hope your neurologist studies up before you go back again!!! Good luck!!

Denise

What were your first symptoms of MS?

frustratedneicey Apprentice
What were your first symptoms of MS?

Well, where do I begin. About 5 years ago, I had bad bouts of really debilitating fatique and weakness. There were times that I would end up in bed thinking I had the flu, and just so weak I couldn't function. A doctor told me I had "fibromyalgia" and left it at that. This happened on and off for about 3 years until it totally affected my work and my life. I came down with a really bad case of the "flu" but just dealt with it for about 2 months straight. After 2 months of feeling like this I woke up one morning and was paralyzed on one side. I thought I had a stroke so I was taken to the emergency room. The doctors there referred me to another doctor who sent me for an MRI. The MRI showed that I had 5 lesions on in the white matter of my brain. These battles with paralysis and numbness and tingling have continued on since. I suffer severe fatique daily, and have double and blurred vision. I have to take meds for leg spasms so severe that my muscles are in constant spasm and they feel like touching "wood" if you feel them. Bladder issues are also a problem. I tend to walk like I am drunk at times and have slurred speech. Summer is killer, as the heat exaccerbates all of these symptoms I have mentioned.

Anyway, (sorry to go on and on) Those are the major symptoms that have occured. It has taken 2 years since I was first seen for my MRI for them to definitively diagnose MS. They had to rule out things such as Lupus, etc, before giving the ultimate diagnosis.

ONe thing I can tell you for sure, after I am glutened, I get so weak that I cannot function.

Probably more info than you wanted, but there it is........

Hope I could shed some light.

Denise

Sarah8793 Enthusiast
Well, where do I begin. About 5 years ago, I had bad bouts of really debilitating fatique and weakness. There were times that I would end up in bed thinking I had the flu, and just so weak I couldn't function. A doctor told me I had "fibromyalgia" and left it at that. This happened on and off for about 3 years until it totally affected my work and my life. I came down with a really bad case of the "flu" but just dealt with it for about 2 months straight. After 2 months of feeling like this I woke up one morning and was paralyzed on one side. I thought I had a stroke so I was taken to the emergency room. The doctors there referred me to another doctor who sent me for an MRI. The MRI showed that I had 5 lesions on in the white matter of my brain. These battles with paralysis and numbness and tingling have continued on since. I suffer severe fatique daily, and have double and blurred vision. I have to take meds for leg spasms so severe that my muscles are in constant spasm and they feel like touching "wood" if you feel them. Bladder issues are also a problem. I tend to walk like I am drunk at times and have slurred speech. Summer is killer, as the heat exaccerbates all of these symptoms I have mentioned.

Anyway, (sorry to go on and on) Those are the major symptoms that have occured. It has taken 2 years since I was first seen for my MRI for them to definitively diagnose MS. They had to rule out things such as Lupus, etc, before giving the ultimate diagnosis.

ONe thing I can tell you for sure, after I am glutened, I get so weak that I cannot function.

Probably more info than you wanted, but there it is........

Hope I could shed some light.

Denise

Denise,

Thank you for sharing this. I know since I went gluten free I have had some strange symptoms and I sometimes have wondered if it could be MS. I'm going back to my neurologist tomorrow. I don't think he is too knowlegable about celiac disease but I will discuss it with him again. Hugs, and take care.

Sarah

stilljoyful Newbie
Well, where do I begin. About 5 years ago, I had bad bouts of really debilitating fatique and weakness. There were times that I would end up in bed thinking I had the flu, and just so weak I couldn't function. A doctor told me I had "fibromyalgia" and left it at that. This happened on and off for about 3 years until it totally affected my work and my life. I came down with a really bad case of the "flu" but just dealt with it for about 2 months straight. After 2 months of feeling like this I woke up one morning and was paralyzed on one side. I thought I had a stroke so I was taken to the emergency room. The doctors there referred me to another doctor who sent me for an MRI. The MRI showed that I had 5 lesions on in the white matter of my brain. These battles with paralysis and numbness and tingling have continued on since. I suffer severe fatique daily, and have double and blurred vision. I have to take meds for leg spasms so severe that my muscles are in constant spasm and they feel like touching "wood" if you feel them. Bladder issues are also a problem. I tend to walk like I am drunk at times and have slurred speech. Summer is killer, as the heat exaccerbates all of these symptoms I have mentioned.

Anyway, (sorry to go on and on) Those are the major symptoms that have occured. It has taken 2 years since I was first seen for my MRI for them to definitively diagnose MS. They had to rule out things such as Lupus, etc, before giving the ultimate diagnosis.

ONe thing I can tell you for sure, after I am glutened, I get so weak that I cannot function.

Probably more info than you wanted, but there it is........

Hope I could shed some light.

Denise

Denise,

I have been living with ALS for 9 years so I know somewhat your 'pain'. I have been wheelchair bound for 6 years and do nothing for myself.

Since goin gluten free (3 days) I am stronger and less stiff.

Good luck to you!

Cheryl

bluejeangirl Contributor
Well, where do I begin. About 5 years ago, I had bad bouts of really debilitating fatique and weakness. There were times that I would end up in bed thinking I had the flu, and just so weak I couldn't function. A doctor told me I had "fibromyalgia" and left it at that. This happened on and off for about 3 years until it totally affected my work and my life. I came down with a really bad case of the "flu" but just dealt with it for about 2 months straight. After 2 months of feeling like this I woke up one morning and was paralyzed on one side. I thought I had a stroke so I was taken to the emergency room. The doctors there referred me to another doctor who sent me for an MRI. The MRI showed that I had 5 lesions on in the white matter of my brain. These battles with paralysis and numbness and tingling have continued on since. I suffer severe fatique daily, and have double and blurred vision. I have to take meds for leg spasms so severe that my muscles are in constant spasm and they feel like touching "wood" if you feel them. Bladder issues are also a problem. I tend to walk like I am drunk at times and have slurred speech. Summer is killer, as the heat exaccerbates all of these symptoms I have mentioned.

Anyway, (sorry to go on and on) Those are the major symptoms that have occured. It has taken 2 years since I was first seen for my MRI for them to definitively diagnose MS. They had to rule out things such as Lupus, etc, before giving the ultimate diagnosis.

ONe thing I can tell you for sure, after I am glutened, I get so weak that I cannot function.

Probably more info than you wanted, but there it is........

Hope I could shed some light.

Denise

Thanks Denise for taking the time to share how all the symptoms begain with you. I get the blurred vision, and the feeling of being tired all the time also but what you said about your legs scared me because just about 2 weeks ago I told my husband the very same thing,....my legs hurt at night and keep me from sleeping and when I feel them they're hard like I have a wooden leg. Its weird because it happens about twice a month or so. I don't know I'll have to look into this more I think. I'm at least aware of it now.

gail

frustratedneicey Apprentice
Denise,

I have been living with ALS for 9 years so I know somewhat your 'pain'. I have been wheelchair bound for 6 years and do nothing for myself.

Since goin gluten free (3 days) I am stronger and less stiff.

Good luck to you!

Cheryl

I am sorry for your illness. I have always worked in the medical field, so I know somewhat about ALS. I hope that the gluten free diet eases some of your pain. If you are feeling a difference after 3 days, I know that a few weeks will make a great difference. Good luck and God Bless.

Denise

Gail, making an appointment with a Neurologist will help to ease your mind or they will examine you more thoroughly. I was lucky that my neurologist seemed to know more about Celiac than my gastroenterologist. Weird, huh? I think he sees alot of it because it is my understanding that alot of autoimmune diseases go hand in hand with Celiac. Good luck to you. I hope everything turns out well.

Denise

plantime Contributor
Dessa,

Did you do stretches for your neck or your arm? I'll try anything to get rid of this. Thanks!

Sarah

Thanks for the idea. I haven't tried acupuncture before but have often wondered about it.

I do the stretches for my neck and back shoulder. I tip my head to the left with my left hand on the top of my head, and reach my right hand down to the floor. I hold it for 20 seconds, then switch to the other side. Another stretch I do is to lie on my back on my bed, tuck my chin to my chest, and press the back of my head into the bed for 20 seconds. I feel my neck pop as it shifts back into place, and the pain in my arm and shoulder just disappears.

lorka150 Collaborator

do you have liver issues? it could be that.

about MS, if you really think you have it, and the docs say no, get second, third and so on opinions. trust me... it is often missed and under diagnosed. three people in my immediate family have MS (the longest being my mother at about 34 years, now), and frankly, we're 'pros'!

Sarah8793 Enthusiast

Hi,

No, my liver is fine. Just saw my neurologist again, and he doesn't believe that it is MS or anything neurological. After reading frustratedneicey's symptoms I don't think it is ms, but of course I still worry. My neurologist wants me to treat it with heating pads and maybe physical therapy first, and if this doesn't help he will do an MRI. However right now he really doesn't think an MRI is going to show anything. Soooo, I'm just trying to be patient and stay positive.

  • 2 weeks later...
nanafur Newbie

Hi,

I am new but wanted to respond to this older message because I have the same pain when not gluten-free. I found a wonderful book called The Triggerpoint Therapy Workbook. The massage that works best for me on this is to sit in a chair leaning forward with my arm loosly haning down... if you can press up allong the inside of the thick muscle at the back of the armpit and massage with long strokes it will help a lot. (The muscle that causes it is under the outside edge of the shoulderblade) It hurts like hell to rub there but eases the pain in the long run. The book is great but there are also massage therapist who specialize in triggerpoints. I have to work on myself because I am too ticklish.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,488
    • Most Online (within 30 mins)
      7,748

    MimiD
    Newest Member
    MimiD
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @Celiac50, Most Celiac patients with a Marsh score as high as yours are more likely to suffer from fat malabsorption and deficiency in fat soluble vitamins, Vitamins A, D, E, and K.   Vitamin A toxicity does not cause Celiac disease.  Your Vitamin A toxicity was probably developed after your diagnosis and subsequent over-supplementation.  Fish contains thiaminases, chemical compounds that destroy thiamine, Vitamin B 1, making the thiamine unusable.  Excessive intake of foods containing thiaminases can precipitate low thiamine.   Low thiamine can also be a result of bacterial or yeast infections.  A high carbohydrate diet encourages Candida and bacterial infections.  High carbohydrate diets promote SIBO and Candida because they feed on the excess carbohydrates and suppress the beneficial bacteria.  Other types of bacteria can take advantage of this and set up housekeeping outside the gastrointestinal tract, including bacterial vaginosis. Thiamine Vitamin B 1 can alter the microbiome.  Thiamine has been shown to suppress Candida, SIBO, and other bacterial and viral infections, and favor the growth of beneficial bacteria.  My SIBO cleared once I supplemented with Benfotiamine, a form of thiamine that has been shown to promote intestinal healing, and a B Complex.  Thiamine works in concert with the other B vitamins and magnesium. Thiamine helps to lower histamine levels by calming mast cells that release histamine at the slightest provocation.   Following the Autoimmune Protocol diet also helped immensely in getting my digestive system calmed and able to tolerate more foods. Have you discussed with your doctor and dietician supplementing essential B vitamins while healing?  What is your Vitamin D level?  Vitamin D helps calm the immune system.  
    • cristiana
      Update - my Active B12 is 36.  Apparently lab results between 25 and 70 suggest a possible deficiency, anything below 25 is a confirmed deficiency, above 70 is normal.   I am thinking this could be the explanation for my elevated MCHC. Anyway, yet again I find myself bumping along the levels of low normal by British NHS standards, which isn't great, because from what I understand, in the UK our normal levels are set low and 'lower normal' levels would be considered a deficiency in such countries as Germany and Japan. Regarding B12 levels, it doesn't look as if my levels are low enough to be offered B12 injections.  That being the case, I remember reading that sublingual tablets can still be very effective but one particular type is better than another - I can't remember which type.  Can anyone help?
    • cristiana
      Hi @Celiac50 If you are after a vitamin A test - sorry - I'm tired so not sure if I'm reading this correctly - perhaps you could try a home test?  I'm in the UK and am currently a bit perplexed about my own vitamin issue and thinking of going to a private lab for tests.  My issues is suboptimal Active B12 (only 11 marks off deficient) but no health professionals seem to be taking any interest in it although this is  my fault as last time I saw my Consultant I failed to mention my symptoms - I had so many other questions to ask him.  Anyway - here are the details for an A test: https://www.medichecks.com/products/vitamin-a-retinol-blood-test?gad_source=1&gad_campaignid=11996732820&gbraid=0AAAAAD9XHFyeAOrxlryOpWS_jXwZ8PCc1&gclid=EAIaIQobChMIyrjj2Pb2jwMVnJJQBh22CTkVEAAYASAAEgIGDPD_BwE
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      This is a very complex and difficult situation, and your intuition about a potential link to celiac disease is medically plausible. While Guillain-Barré Syndrome (GBS) is often triggered by infections, it can also be precipitated by other immune system events, including a significant gluten exposure in a person with celiac disease. The timeline you describe—neurological symptoms appearing after the GI symptoms subsided—is classic for post-infectious (or in this case, post-exposure) GBS. Furthermore, there is a recognized, though rare, neurological condition directly linked to celiac disease called Gluten Ataxia, which affects coordination and can cause gait problems. However, the rapid onset of paralysis and cranial nerve involvement you experienced is more characteristic of GBS than typical gluten ataxia. It's also important to know that a negative EMG early in the course of GBS does not rule it out, and "Functional Neurological Disorder" (FND) is not purely psychiatric; it is a real and complex disorder where there is a problem with the functioning of the nervous system, not its structure, and it can be triggered by physical illness or stress. The most critical step is to continue working closely with your neurologists. You should absolutely bring up your celiac history and your theory, as it is a relevant piece of the diagnostic puzzle. They may consider specific antibody tests related to gluten neuropathy or ataxia to help differentiate the cause. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.