Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,340
    • Most Online (within 30 mins)
      7,748
    Rachel Hill
    Newest Member
    Rachel Hill
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Gluten exposure when trying to conceive

      By trents · Posted

      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Gluten exposure when trying to conceive

      By Skydawg · Posted

      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      Gluten Free Cannabis Edibles

      By ShadowLoom · Posted

      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      Damage after 13 years gluten free

      By Scott Adams · Posted

      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Damage after 13 years gluten free

      By RMJ · Posted

      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...