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

Nerve Pain - Celiac Disease?


CTabb44

Recommended Posts

CTabb44 Newbie

Hello,

I would never have found this site if it wasn't for a friend who told me to look into Celiac disease, because he has the condition. I mentioned to him some of my symptoms and he told me to get tested. I am of Irish decent - basically 100%. Over the past 8 years or so i have suffered from very bad heart burn and IBS, off and on. The IBS hasn't been with me for a while now though was really bad when it was and the heart burn has been around very consistently. Recently, past 1.5 years or so, i have begun to develop strange, neurological symptoms. I originally experienced some tingling in my hands and fingertips. This has gone away, only to be replaced by sharp shooting pains in my nerves. The are almost like quick, sharp pin pricks, and can occur anywhere on my body. The symptoms usually come along and progress in intensity as the day goes on. I always notice them after lunch and dinner. Usually, breakfast isn't tooo bad. I am wondering if there is any chance that this could be related to Celiac disease. I have never tried to eat a gluten free diet, and I don't want to - haha. But, if it helps to get rid of the symptoms, I would be all for it.

I appreciate any help and feedback from you guys.

Thanks,

Colin


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

I haven't had those exact symptoms myself. But I do have ringing in the ears, occassional muscle twitches, eye lid twitches or tick, dizzyness, loss of balance, joint pain, that's eough, there's more of course. Anywho, most of my symptoms improved or lessened after going gluten-free. Some of the neuropathy issues are supposed to be caused by vitamin levels being too low. Others may be caused by actual nerve damage. I can't say I know which is which myself. Other people have reported nerve pain on the forum in the past though.

I almost forgot the most important thing! I am of Irish descent also!

CTabb44 Newbie

I appreciate the reply and based on other people's responses on the board, I will look into eating a gluten-free diet for a couple of days. Not east to do though when I look into the cabinets. But, maybe this will give me an idea of whether or not there is any relationship.

ravenwoodglass Mentor

A couple of days is not likely to produce any results. You really need to give it a month or two. It can take a while for the nerves to heal and one thing that may help speed the healing along is to get some sublingual B12. You really should get a blood test at the least before you go on the diet but even if the test is negative that doesn't mean that gluten isn't an issue. When celiac effects the nerves the damage can be progressive and if it goes on long enough may not be completely reversable. One other thing that should be mentioned is that uncontrolled diabetes can cause the same type of neuropathy that you are experiencing so it would be a good idea to have your doctor check you blood sugar levels as well as a celiac panel. Having one does not exclude the other and in fact celiac disease is often found in folks with diabetes.

RiceGuy Collaborator

The advice given by ravenwoodglass is good. Besides the sublingual B12 (make sure it's methylcobalamin), I'd recommend magnesium. These two are very important for nerve health. A B-complex would probably be a good idea too.

Besides going gluten-free, there are a few other things you can do which can help you heal faster. Nightshades have toxic alkaloids which impede motor nerve function, so if you have intestinal damage from Celiac, those alkaloids may get into the bloodstream more than usual, thus effecting you more. For me, one serving of potatoes would literally render my legs basically useless for almost two weeks. Another thing may be dairy, because intestinal damage often makes it harder to digest until there has been sufficient healing.

We all know how it is to have to avoid favorite foods, but it can make all the difference in the body's ability to heal. Some find that they can add dairy back in once they've healed, and like all of us, you'll find new favorites too.

Though the prospect of dietary changes may seem daunting now, rest assured you'll get through it, and the fine members of this board will always be here to help you along the way.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,901
    • Most Online (within 30 mins)
      7,748

    tessycork47
    Newest Member
    tessycork47
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.