CD and foot pain/neuropathy

[Guest guest]

My son has the very unusual presentation of painful neuropathy with his

cd/gluten intolerance. I have done all of the reading/researching online

regarding it, and know that they are finding out that the 2 are definitely

related. I was just wondering if there is anyone out there with first hand

experience of the neuropathy accompanying the stomache symptoms. My son has to

take alot of medication just to stay pain free.

We have been on the GF diet for 9 months now. I wish I had found this board

earlier. We were feeling pretty alone out there.

thanks,

susan

[Guest guest]

I know exactly what pain your son is in becuase I had it, too. Severe

nerve pain, large muscle weakness, insomnia, etc. - all due to a

severe vitamin B12 deficiency. First I was diagnosed with that, then

the doctors went looking for the source of the deficiency and found

the gluten intolerance (not officially celiac because after feeling so

much better GF I refused to start eating gluten again to have the biopsy)

Have your son tested for a vitamin B12 deficiency, and **make sure the

doctor is familiar with the latest research that shows the old normal

range of 250 - 700 is too low!!!!!** My nerve pain quickly comes back

if my level goes below 500. One high dose B12 per day, no nerve pain

for me.

Maureen

> My son has the very unusual presentation of painful neuropathy with

his cd/gluten intolerance. I have done all of the reading/researching

online regarding it, and know that they are finding out that the 2 are

definitely related. I was just wondering if there is anyone out

there with first hand experience of the neuropathy accompanying the

stomache symptoms. My son has to take alot of medication just to stay

pain free.

>

> We have been on the GF diet for 9 months now. I wish I had found

this board earlier. We were feeling pretty alone out there.

>

> thanks,

>

> susan

[Guest guest]

,

My daughter Shelby, age 12, has the neuropathy disease Reflex Sympathetic Disease, also known as Complex Regional Pain Syndrome. It affects her left leg. She suffered horrific pain for a year and a half before they found she had Celiac Disease quite on accident. She was having stomach pain and horrible chest pain. They did an endoscopy to get a good look inside and found Celiac. We immedately took all wheat and gluten out of her diet and she was pain free in 4 days. It was like a miracle. She had been on crutches or a cane for over a year. Because of the pain level and all of the Dr. appts. and physical therapy, she was homeschooled. We are very, very grateful for the Celiac dx. We were then all tested and all 5 of us, my husband and myself included, were positive. Explained a lot! We are all thankful to be gluten free. Shelby still experiences stomach pain. Was even hospitalized for 4 days and had another endoscopy last spring. She has tried many medications but we found over the counter Pepcid to be a life saver. She was taking 2 in the morning and 2 at night but has now weaned down to 2 at night. If her stomach is bothering her she just takes a Pepcid. The school even keeps a bottle for her.

What medication is your son on? Glad you found this wonderful group.

Cari

CD and foot pain/neuropathy

My son has the very unusual presentation of painful neuropathy with his cd/gluten intolerance. I have done all of the reading/researching online regarding it, and know that they are finding out that the 2 are definitely related. I was just wondering if there is anyone out there with first hand experience of the neuropathy accompanying the stomache symptoms. My son has to take alot of medication just to stay pain free. We have been on the GF diet for 9 months now. I wish I had found this board earlier. We were feeling pretty alone out there.thanks,susan

[Guest guest]

Maureen,

Thanks so much for your reply. My son was tested for B-12 deficiency, but all I

can find in his medical records is that he was " negative " for the deficiency.

I can't find what his range was. I am going to follow up with his doctor and

see if I can find out.

Right now he is taking 900mg of Neurontin, 40 mg of Pamelor and wears

Prescription Lidoderm patches on both feet at night just to stay " relatively "

pain-free. All the medication scares me, but he could not continue to live his

life in excruciating pain. He is only 10!

If there is no down-side to the B12 supplement, I would rather have him on that,

especially if he got relief and could get off of some of the prescription drugs.

Thanks for the tip. I am going to call the dr. tomorrow to see what his B12

range was.