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Celiac And Peripheral Neuropathy

rickops

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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

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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.

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    • trents
      is my cleiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
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      is my cleiac disease gone?

      By numike · Posted

      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      is my cleiac disease gone?

      By trents · Posted

      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
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