Possible Celiac Nerve Pain
 

My daughter was diagnosed with Celiac 2 years ago. She is now gluten-free according to blood tests. But..when she stopped eating gluten she developed a nerve pain in her upper back near the shoulder blad which has increased to the point that she can no longer sit for more than 10 minutes. She also has leg pain (like sciatica) on the opposite side. She has seen 3 neurologists, chiropractors(cold laser), sports medicine(lidocaine shots in muscle) and has had CT scans and MRI's. They can find no specific cause. She is allergic to most pain meds and cannot take OTC due to her Celiac problems. Since we live in Hawaii we don't have a vast choice for doctors and my daughter cannot handle a 5 hour flight to the mainland:confused. The Celiac community and web sites have been queried with no good results. Does anyone have any suggestions? Thank you.

Welcome to NT

Although I don't understand celiac nerve pain, with all the testing, it is a comfort to know the things it is not. With all those tests being negative, I can assume there's no structural causes for the pain, like scoliosis, bulges, herniations, fractures, tumors, masses... that's great.

I have found alternative methods to help me. I went through 7 years of hell. 24/7 pain due to an auto accident in October 2000. the last couple of years keep getting better.

These are some of the things that helped me.

Meds: they changed from time to time ... actually, they changed a lot. constant tweaking...

I did take muscle relaxers (Baclofen daytime, Flexeril nighttime), Darvon 65 for pain, Neurontin, Celebrex-with Nexium, Lidoderm 5% patches (topical), and tried many others.

Physical therapy:

E-stim, trigger point therapy, hot/cold packs, myofascial release, stretches, whirlpool, home exercises

other things I found helped me

Miracle Ball Set http://www.amazon.com/Miracle-Ball-M.../dp/0761128689, LED/infrared light therapy pad (I can sell those-I do believe in them-this is my upline's webpage) http://www.healthlightz.com/ , TheraCane http://www.theracane.com/, Twist Board http://images.google.com/images?rlz=...N&hl=en&tab=fi, oversized tennis balls, Back Magic Board http://www.qvc.com/qic/qvcapp.aspx/v...ite=BACK_MAGIC , yoga, relaxation techniques, Kinesio tape - I really recommend you look into this Chinese taping technique) http://images.google.com/images?rlz=...N&hl=en&tab=wi (with a little understanding and instruction, you can do this. Putting my hairdryer on a stand. Vitamins. Activa yogurt. Neurotalk Communities - It's just a great place for us.

I would be happy to give you more info about any of the above...

oh, yeah. and inhale water, then drink some more.

See you around the board.

No question is too silly here, so just let us know what your concerns are and we'll try to give you some ideas to work around the problems.

Hello shirljean
 

Welcome to NT..... :Wave-Hello:

I'm very sorry to hear of your daughter's struggles....:(
You've found a wonderful place for encouragement and support tho!

I would encourage you to check out the Peripheral Neuropathy forum
here is the direct link to click on:

http://neurotalk.psychcentral.com/fo...aysprune=&f=20

There is much information there on how to deal with neuropathy.....many folks there with very good knowledge on how to combat the pain and what to look into as possible causes.....

I know how frustrating this is for you....
Truly Caring
Rae
:hug:

Welcome to Neurotalk--
 

--though I'm sorry about what brings you here.

Uunfortunately, nerve pain/damage can definitely be a consequence of celiac/gluten sensitivity, and the sad part is that not many doctors, even the gastric specialists, are well-versed in this, depsite the increasing research literature on it. It can come directly, from cross-reaction of celiac/gluten antibodies to nerve, or secondarily as a result of vitamin/nutrient deficiencies caused by malabsorption, and even when one stops eating gluten, recovery is quite varied.

You already have the link to our Neuropathy forum, I also suggest looking at the celiac/gluten forum, particularly those posts by jccglutenfree, who has created the Gluten File, perhaps the most comprehensive database on the subject extant:

http://neurotalk.psychcentral.com/fo...prune=365&f=13

http://neurotalk.psychcentral.com/thread1872.html

Welcome shirljean