Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Celiac And Peripheral Neuropathy

rickops

Recommended Posts

rickops Newbie
rickops
Posted

Hi, I have an update and a question:

As I posted before, my daughter has a rather severe peripheral motor neuropathy, and though we've been to the Mayo Clinic, we have no explanation for the cause, or a plan for a treatment. Basically, Mayo said they thought that she'd recover the use of her hands and feet. That this was not progressive.

We have an app't with a gastroenterological clinic in 2 weeks to test for celiac disease. We went to a naturopath last week, and were told that she has severe issues with her large and small intestine (sounds like celiac) and were given digestive enzymes, vitamin/mineral supplement, immune system booster, and detox formula. They said that if we took care of the digestive and maladsorption issues, the neuropathy would take care of itself.

Now to my question:

Her hands seem to have stabilized regarding loss of strength, but the muscle atrophy is alarming. Does anyone know of any help to speed up the healing of the neuropathy? Will healing the celiac disease damage reverse the neuropathy by itself, as the naturopath suggested, or would some medical intervention such as IVig aid in her recovery? There is so little information that is clear, and it is hard to decide what to do. We have a follow up appt. with the OHSU neurologist scheduled 2 weeks after we see the gastro clinic doctors, but I was wondering if any of you have first hand experience that speaks to this question. Thanks.

Rickops

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

Celiac.com Sponsor (A8-M):


Sophiekins Rookie
Sophiekins
Posted

Rickops,

I can't personally answer your question, but I recommend that you visit this site:

Open Original Shared Link

as there will be people there who can. . .they are the experts when it comes to celiac disease and its neurological side effects.

Best of luck, (and please, I know how hard it is to do this, but please keep your daughter on gluten until you see the GI. . .if you're lucky, the doc can test for celiac disease then and there, and then you can take your daughter gluten free)

Sophie

Lisa Mentor
Lisa
Posted

Rickops:

I am so glad that you have returned. I have thought alot about your situation and hoped that you would find the answer for you child.

GFMemphis gave you some leads. I hope you followed up on those.

There are many parents here with children with celiac and I am sure that they will be here soon. I have heard that testing small children is not always reliable. Some upt to go gluten free and to test at a later age.

My thoughts go out to you.

Lisa

rickops Newbie
rickops
Posted
  • Author
Rickops,

Thanks for the link Sophie! That is an awesome site with lots of info. I posted my question there, but no replies yet. Folks seem to answer here much more quickly. I appreciate it. It is good to read of other's experiences. Lots of wisdom in personal stories. Take care and thanks again.

Rickops

I can't personally answer your question, but I recommend that you visit this site:

Open Original Shared Link

as there will be people there who can. . .they are the experts when it comes to celiac disease and its neurological side effects.

Best of luck, (and please, I know how hard it is to do this, but please keep your daughter on gluten until you see the GI. . .if you're lucky, the doc can test for celiac disease then and there, and then you can take your daughter gluten free)

Sophie

mamabear Explorer
mamabear
Posted
Hi, I have an update and a question:

As I posted before, my daughter has a rather severe peripheral motor neuropathy, and though we've been to the Mayo Clinic, we have no explanation for the cause, or a plan for a treatment. Basically, Mayo said they thought that she'd recover the use of her hands and feet. That this was not progressive.

We have an app't with a gastroenterological clinic in 2 weeks to test for celiac disease. We went to a naturopath last week, and were told that she has severe issues with her large and small intestine (sounds like celiac) and were given digestive enzymes, vitamin/mineral supplement, immune system booster, and detox formula. They said that if we took care of the digestive and maladsorption issues, the neuropathy would take care of itself.

Now to my question:

Her hands seem to have stabilized regarding loss of strength, but the muscle atrophy is alarming. Does anyone know of any help to speed up the healing of the neuropathy? Will healing the celiac disease damage reverse the neuropathy by itself, as the naturopath suggested, or would some medical intervention such as IVig aid in her recovery? There is so little information that is clear, and it is hard to decide what to do. We have a follow up appt. with the OHSU neurologist scheduled 2 weeks after we see the gastro clinic doctors, but I was wondering if any of you have first hand experience that speaks to this question. Thanks.

Rickops

Rickops,

I am concerned with your assessment of alarming muscle atrophy. I urge you to get an appointment early this week with your daughter's pediatrician. He or she can run interference with the GI and neuro doctors, and make appropriate calls to expedite her care. Please keep us up to date.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired. I haven’t been to an allergist in a few years, I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young...
    2. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply
    3. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways. I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux. Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following...
    4. trents
      - trents replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
    5. Scott Adams
      - Scott Adams replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      5

      Anyone else get a lot of upper respiratory infections?

      Yes, some people with celiac disease do seem to deal with frequent infections, especially if they have ongoing inflammation, nutrient deficiencies, asthma/allergies, or another immune issue going on. Low vitamin D can also affect immune function, so it would be reasonable to ask your doctor to recheck vitamin D, iron/ferritin, B12, folate, zinc, and possibly...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,124
    • Most Online (within 30 mins)
      10,442
    HelloFlowersGoodbyeFlour
    Newest Member
    HelloFlowersGoodbyeFlour
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways.  I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux.  Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following a holiday to France in 2019, where I had been exposed to gluten.    The reflux continued into the autumn and winter, my throat itched to begin with, particularly after meals, but it then that feeling of irritation seemed to spread to my lungs.  I even found it difficult to breathe on occasion. What stopped it in its tracks was using a wedge pillow at night, following a reflux diet (you can find them online), not eating 2-4 hours before bed and also having a dose of Gaviscon Advanced at night, which forms a barrier so that acid/food can't go back up your esophagus.  The throat irritation faded, and then I found it easier to breathe again. Just mentioning in case it could be a contributing factor.
    • trents
      Anyone else get a lot of upper respiratory infections?

      By trents · Posted

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
    • Scott Adams
      Anyone else get a lot of upper respiratory infections?

      By Scott Adams · Posted

      Yes, some people with celiac disease do seem to deal with frequent infections, especially if they have ongoing inflammation, nutrient deficiencies, asthma/allergies, or another immune issue going on. Low vitamin D can also affect immune function, so it would be reasonable to ask your doctor to recheck vitamin D, iron/ferritin, B12, folate, zinc, and possibly general immune markers if this keeps happening. Also, people with celiac disease can have reduced spleen function, or hyposplenism, which is one reason some celiac organizations recommend pneumococcal vaccination or making sure you are up to date on pneumonia-related vaccines. Since you are getting bronchitis, pneumonia, and frequent colds in your late 20s, I would not just brush it off, especially if symptoms are lingering after a week and a half. It may or may not be directly from celiac, but repeated respiratory infections are worth documenting and discussing with your doctor, and possibly with an allergist/immunologist or pulmonologist.
×
×
  • Create New...