Please Help ---nerve Pain

[jjtj]

Please help,

My Mom was recently diagnosed with Celiac. The doctors are not 100% sure she has the disease. They think she has it because they performed an endoscopy and a colonoscopy and saw a damage on her intestines.

She has been on a diet for almost a week now. Her simptoms do not improve. She has a sharp dull pain in the abdomen and goes to the back and seems to hit a nerve in the hips and then the leg.

Maybe it is a nerve in her leg similarly to Sciatica.

If anyone experiences that pain, please let me know. I heard that a lot of people with Celiac has nerve problems. No doctor seems to tell my mom what to take for the pain and she hates to take pills. Please advise which doctor to seek for her problems.

My mom is very depressed. I'm very concern about her health. She does not want to live.

Thank you,

[ShayFL]

This can help:

Benfotiamine

It is a dietary supplement. Comes in pills. But you can try it transdermally as well:

Open Original Shared Link

[Juliebove]

She might also try Evening Primrose Oil, 2,000 mg each morning and night. And she might try a chiropractor.

[kbtoyssni]

She may also want to try acupuncture. I've done it for nerve pain that my regular docs couldn't figure out, and just a few sessions, and I can use my arm again! (after 18 months of pain...) Try googling "community acupuncture" in your area - it's often cheaper than the non-community clinics since it's often not covered by insurance.

[Ginsou]

Your mom should consider being tested for lactose intolerance,and allergy to soy and milk /casein. My lactose intolerance symptoms are very painful....abdominal pain that radiates to the back and sometimes between my shoulder blades.

My soy allergy also causes back pain and nerve pain in my left hip and leg.......very strange!

Doctors do not like to prescribe pain killers to a patient when they do not know what is causing the pain. Covering up the pain will hinder a diagnosis. Your mom may still be eating something that has gluten in it, and doesn't realize it.

My recent blood tests showed many other food allergies....corn,potatoes,carrots,yeast,and many more. Blood tests are not accurate; scratch tests for food problems may be more accurate. Has your mom's doctors suggested additional tests??

Before my diagnosis, I also was very depressed....migrated from the couch to the bed for about 6 weeks until I could see a doctor. Diagnosis was IBS, or diverticulitis. Blood tests for celiac were negative. I discovered this forum, and spent many days reading about celiac. I had Enterolab tests done and the results were positive. I solved the pain problem myself and next month will have medical coverage and can finally see a gastro dr.

Mom should try rice, bananas, applesauce....as much as she can stand for a few days to see if the pain goes away.Pedialyte may help keep her strength up......it sounds like she may have malabsorption.

Let her know about this forum......very good info here. Give her a hug and encouragement from us.

[RiceGuy]

I got rid of all pain by avoiding all nightshades, and taking magnesium and a sublingual methylcobalamin (B12) supplement. This may or may not help, but it's certainly worth a try, and can't hurt!

[evilette13]

First, please let your mom know that she is experiencing normal symptoms and feelings associated with celiac following diagnosis.

During my first year after diagnosis, I had intense nerve pains in all limbs, severe depression and could not understand why I was not improving more quickly. Unfortunately, research suggests it takes children six months and adults up to two years for intestinal damage to heal. This does not mean your mom will not improve before two years, but symptoms do not go away quickly.

I have been gluten-free for two years. I no longer have constant pain in my right abdomen, mostly due to my involvement with pain management. I too did not want to live a life of medication, but the pain was hindering me in so many ways I felt it was the best option. I'm sure most people do not want to take medication. But diabetics need insulin and I need pain medication, it is that simple. Likewise, your mom might need to take something for a short time or her joining a support group might be enough.

By introducing her to a local support group, your mom's spirits will improve; she will gain knowledge about the disease and helpful information about managing her life. Please, introduce your mom to this forum. At first, I was not sure that I COULD live with the diagnosis. Time helps but your mom needs support now. She is lucky to have you and the wonderful members available on this site. Please let her know that she is not alone. In the beginning, I would often visit this site in the middle of the night just to tell SOMEONE else who understands how miserable I felt that day. I always met the most amazing people and only received the warmest thoughts about my feelings.

Today, I feel much better. However, I still love the support of this internet community.

Good luck!!

--

Please help,

My Mom was recently diagnosed with Celiac. The doctors are not 100% sure she has the disease. They think she has it because they performed an endoscopy and a colonoscopy and saw a damage on her intestines.

She has been on a diet for almost a week now. Her simptoms do not improve. She has a sharp dull pain in the abdomen and goes to the back and seems to hit a nerve in the hips and then the leg.

Maybe it is a nerve in her leg similarly to Sciatica.

If anyone experiences that pain, please let me know. I heard that a lot of people with Celiac has nerve problems. No doctor seems to tell my mom what to take for the pain and she hates to take pills. Please advise which doctor to seek for her problems.

My mom is very depressed. I'm very concern about her health. She does not want to live.

Thank you,

[SherriOlson]

Hi all,

I am a new member on the forum. Thank you to everyone! I can tell what a great place it is! And the amount of support being given is so inspiring and gives me lots of hope! :-) I have also had several surgeries, MRI's and many doctor visits, ER visits and meds. I actually figured out on my own about a year ago (at age 39) that I had celiac. (My mother and sister have both had it forever.) I made a big adjustment to my diet but not near enough. I got rid of most of the bread in my diet, but not completely. Now I know I need to get rid of all gluten (and no cheating, unless I want to suffer) and I will also look into the supplements everyone has suggested.

What finally pushed me to do something (i.e. search the net to find a site like this) was some new really bad neurological symptoms. (My health picture is a bit confusing with diagnoses already of lupus, fibromyalgia, early osteoarthritis, endometriosis, sleep apnea, and mild allergies and asthma.) But I had been having some hip pain which just kept getting worse and worse until I could barely walk at all and was experiencing excruciating pain unlike anything I had ever felt in my life! So after spending 5 days in the hospital last week at Cedars Sinai and the medical doctors being unable to find the cause of my pain, I think I have just found it here! (I sure hope so any way!) I still have so much reading to do on this bulletin board. There is so much info here! But I am already so relieved, because I just know I am going to get better soon!

I have a dr appt tomorrow so I will have them test me for celiac. Then I will start my 100% gluten-free diet right away after the test is done. I will keep you all posted as to how everything goes on the new diet!

Thank you all and God bless!

:-) Sherri

[ChristyGlutenAtaxia]

I had severe pains from nerves and a vibration feeling in my arms which I later found out by watching a video from Dr. O'Brian on "unlocking the mysteries of wheat and gluten" (I think that is the name) that a study had been done that showed the gluten actually deteriorates the nerves. I also found that dairy played a role too. I have eliminated both. My pains are gone but if I slip up and have dairy I can usually expect shooting/stabbing pains in my muscles the next two days. Since I have gluten ataxia it actually attacks my cerebellum causing brain damage. (Yeah, my family has had some fun with that one.) So I took L-Glycine to build the sheaths up around my nerves.

I also had problems with a severe pain in my mid back where I collapsed and couldn't use my legs for about 15 minutes. I could barely breath. I attributed it to having been hit by a pickup truck as a pedestrian 18 years ago. While the gluten may have done damage to her nerves and made them more sensitive, I would suggest that she go to a good D.O., one that manipulates. I suspect that something is out of place and aggravating her already sensitive nerves. I know a great D.O. in Chicago area, if your not in this area you will know the good ones because they won't be able to get you in for a month.

Dr. O'Brian also talks about the depression on his DVD. I was surprised to find that the gluten actually cuts the blood flow off to the brain and then you have an overwhelming blood flow to the frontal lobe which causes anxiety and depression. My neurologist actually caught the blood flow on a SPECT brain scan returning to my frontal lobe and asked me if I was depressed or felt anxious before I was diagnosed. When I shared the DVD with him he found it most interesting.

Just keep in mind you have a lot of damage in your body and it won't heal overnight. Especially when you consider that her intestines are damaged and she still is not getting all the nutrients that she needs to heal. I would consult a good holistic certified nutritionist that is experienced with celiac and gluten intolerance. You have to get her gut healed and then the rest of the body will follow. God Bless, it gets better really!!!

[mslee]

Yep.

Joint pain was my first symptom it just kept getting worse, I'm hoping gluten free will help.

When I was working I started dropping things and loosing control of my hands. I still do at home, in the Kitchen especially.

I've seen a couple neurologists had MRI's, had nerve testing, and Brain scans...all showed nothing, no abnormalities. Dr. just says I have a migraine disorder.

at the same time I was diagnosed with Celiac (about a month ago) they also found I have 2 types of Colitis.

I think Celiac, and colitis both cause joint pain. I think Nightshades do make it worse.

Arthritis, Joint pain, sciatica, allergy & gastro problems run in my family.

Experimenting, watching and waiting... It will take time for my insides to heal. In the mean time trying to pin point other problem foods

* I will say this, in my 15 years as a human guinea pig, alternative/holistic med/natural/diet/exercise...have helped so much more than Modern Western Medical has been able to.... ex. If I had not eaten wheat for the past 28 years I wouldn't have most of the problems I have today. Problems no Dr's until now, have been able to give a cause.

I used to say "yeah natural medicine seems to help, but there has to be some major root to all of this some Dr will find."

they found it ... it was in my diet and the meds they kept giving me

[ChristyGlutenAtaxia]

Hi all,

I am a new member on the forum. Thank you to everyone! I can tell what a great place it is! And the amount of support being given is so inspiring and gives me lots of hope! :-) I have also had several surgeries, MRI's and many doctor visits, ER visits and meds. I actually figured out on my own about a year ago (at age 39) that I had celiac. (My mother and sister have both had it forever.) I made a big adjustment to my diet but not near enough. I got rid of most of the bread in my diet, but not completely. Now I know I need to get rid of all gluten (and no cheating, unless I want to suffer) and I will also look into the supplements everyone has suggested.

What finally pushed me to do something (i.e. search the net to find a site like this) was some new really bad neurological symptoms. (My health picture is a bit confusing with diagnoses already of lupus, fibromyalgia, early osteoarthritis, endometriosis, sleep apnea, and mild allergies and asthma.) But I had been having some hip pain which just kept getting worse and worse until I could barely walk at all and was experiencing excruciating pain unlike anything I had ever felt in my life! So after spending 5 days in the hospital last week at Cedars Sinai and the medical doctors being unable to find the cause of my pain, I think I have just found it here! (I sure hope so any way!) I still have so much reading to do on this bulletin board. There is so much info here! But I am already so relieved, because I just know I am going to get better soon!

I have a dr appt tomorrow so I will have them test me for celiac. Then I will start my 100% gluten-free diet right away after the test is done. I will keep you all posted as to how everything goes on the new diet!

Thank you all and God bless!

:-) Sherri

Sherry,

Just wanted to make sure you are aware. False negatives and positives are common and the only real way to tell is through the scope. Some doctors won't do it without a positive blood test. I have talked to a lot of people in supports groups that had false negatives and some were able to get the scope and it showed damage. Others decided they would start the gluten free diet on their own. My neurologist urged me to just start the diet without the tests since it was doing actual damage to my brain. You may already know this but just in case.

Christy