Need Your Help

[Carol McLemore]

Hello..I have never posted like this before, so please forgive me if I do this wrong. I have recently been diagnosed with celiac about 4 months ago. My symptoms have been terrible lower back pain, numbness is legs (I trip and fall alot cause I can not seem to pick up my feet very well) bad cramping in my legs and feet, had diarea for about 5 years, gas, anxiety, depression. I had spoke to my primary care doctor about 5-6 years ago about my back pain & leg problem, and he kept telling me I was out of shape and over weight, and would not take me serios. Finally, he decided to do a lower spine mri and found nothing wrong. He sent me to a neurologist. He tested for MS and did a nerve conduction test. He ordered the upper and mid spine mri and did find that my spinal column was narrowing in my upper spine that was pinching my spinal cord, and also had 2 bulging disks. He sent me to a spinal neurologist surgeon. This doctor told me that I did need surgery on my upper spine, but he did not think it has anything to do with my lower back and legs. He said there was nothing wrong with my back. I did have the 2 surgerys for my upper back, but nothing had helped me with the lower part. I changed primary care doctors. And she actually listened to me. She ran the blood test to test for celiac, and it came back extremely higher than normal. The gastrologist told me he did not want to waste my time or money by doing the biopsy because I definetly had celiac. I have been on a gluten free diet since. My diarea has gone away, but, my lower back pain, leg problems, and cramping are still going strong. I still stumble and sometimes fall. I think people think that I am drunk. I can not do stairs unless there is a rail or someone to help balance me. I am getting very discouraged with the lasting symptoms and feeling very alone. The people I have talked to with celiac never heard of having back or leg problems associated with celiac. I know that I read it somewhere, or am I just crazy? If anyone would have a moment to talk to me, I would be eternally grateful.

Carol

[The Fluffy Assassin]

...I have been on a gluten free diet since. My diarea has gone away, but, my lower back pain, leg problems, and cramping are still going strong. I still stumble and sometimes fall. I think people think that I am drunk. I can not do stairs unless there is a rail or someone to help balance me. I am getting very discouraged with the lasting symptoms and feeling very alone. The people I have talked to with celiac never heard of having back or leg problems associated with celiac. I know that I read it somewhere, or am I just crazy? If anyone would have a moment to talk to me, I would be eternally grateful.

Carol

You are suffering from ataxia: Open Original Shared Link which is frequently a result of B12 deficiency: Open Original Shared Link (scroll down to the second item). B12 deficiency is often a result of celiac disease. It should straighten itself out on the gluten free diet, but sublingual B12 supplements should help a lot. After a certain age (some time in the 60s apparently; I can't find a source that will specify), the body stops producing intrinsic factor, making it unable to process B12. If you are a senior citizen, you might want to talk to your primary care physician (the one who listens to you) about B12 injections: Open Original Shared Link But otherwise, the sublingual B12 should help a lot. A multivitamin might help, too; you're probably down on a variety of vitamins and minerals; one or more of these could be causing your leg cramps. (One mineral that celiac disease causes deficiency of is calcium; that could have something to do with back pain. I'm certainly hoping so, because I still have chronic back problems as well.)

Welcome to the board and best of luck to you.

[Takala]

Hang in there. It really can get better, slowly and surely.

I have ongoing spinal issues (stenosis big time in my cervical spine, blown discs) and have regained the feeling in my legs and feet and can now do stairs. It is a good idea, however, if I use the handrail while going down.

The lower back severe pain has mostly resolved to medium/mild and I can mentally block it out for hours, however, I don't hesitate to change positions or lay down or sit or stretch whenever I need to.

I have had sciatica down the backs of my legs for my entire adult life, starting around age 19, and that seems to be a permanent feature that isn't going anywhere. That is because with spinal arthritis (spondylitis) one gets that as the lower sacrum tailbone area slowly gets pinched nerves as it tends to narrow and fuse up first. This is a secondary disease to the gluten intolerance and it's made a lot worse by the digestive problems screwing up absorption of vitamins and minerals.

Take supplements. B complex, calcium, magnesium, vitamin D, iron if you are female and pre menopausal. You must do this to get your bones back into solidity. Make sure they are gluten free, also.

Get physical therapy. If you cannot find a doctor to proscribe you a round of physical therapy, try to find somebody who can at least give you a consult and a few sessions paid for out of pocket. Or go to the bookstore and get a book on doing yoga or other balance exercises. You can regain your balance and coordination if you stick with the diet and work on your exercises regularly. I also do a few yoga poses that require me to balance on one leg. One of the ways I work on this is with my horses, as I had the good fortune to have been able to take training lessons along with my horse with a natural horsemanship trainer who was extremely patient- if I can get through an on the ground warmup with a horse and not splat on the ground, (and this takes a lot of concentration, strength and coordination to pull this off for me) then I'm good to go. Some horses have physical issues and also benefit from the practice of bending and moving front and back ends and become more supple. Yes, this hurts afterwards, but so does everything else for me, so what's the difference.

The first time I tried resuming skiing into this, it was pretty funny as I was going along on my stronger leg and hoping the weaker one wouldn't mess me up, and I traversed the beginning of the hill and went to turn right.... and nothing happened. I mean nothing. I still couldn't feel my right foot and the message wasn't getting there that it was that foot's turn to do something so the rest of me could pivot and head the other way. I'm standing there near the top of the run thinking

Oh, $%^&*($%^&. Maybe this wasn't a good idea yet.

But I eventually learned to do all my steering/edging on the left leg, while the right one just slid along next to it, until I got a bit stronger on the right. I do use my abdominal muscles quite a bit more than the average skiier to make turns. I thought, if these handicapped skiers can do this on one leg why can't I fake it.

I do know that people sometimes are watching me try to walk in ski boots up or down the steps and carrying my skis over my shoulder, to where you put them on to get to the lifts and they're thinking No Way but once on the skis it all comes back.

I was hit by another careless, out of control, much younger skiier from behind and went down pretty hard 3 winters ago, and it is this past winter and this summer that I am finally getting over that injury, which screwed up my better leg, and doing more.

About 9 years ago I was so bad off, with bouts of ataxia and dragging one leg and catching my foot, numbness in feet and hands, plus my vision was soooo screwed up, I encourage you to stick with this because anything is possible.

The idiot moron (it probably was outsourced to another country) who read my last scan on my pelvis/sacrum lower lumbar spine about 2 years ago pronounced it "normal," so I give up on them. They're hopeless. Maybe when I hit Medicare age they will acknowledge there is a nerve issue going on there, but I still don't expect anything from them on it. I do carry actual images of my c -spine with me to new doctors so they don't give me any grief, if they look and pretend it's normal, I know they're quacks and are not worth keeping as doctors.

If you don't get better on a regular gluten free diet you may want to try a grainless SCD diet for at least a while, that is what I did and then I slowly added back in some grain carbohydrate, but overall I'm much low carb than a normal person. Beware also some manufactured gluten free foods may not be as gluten free as one would wish, be aware also that spondylitics are extremely sensitive to dietary starch (modified food starch is just plain evil nasty stuff ) even if it is supposed to be from sources that are "safe."

Don't forget to look for other hidden sources of gluten cross contamination, such as lipsticks or lotions or pet foods.