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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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