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Celiac Or Other Nutrient Deficiency And Nerve Pain?

daniella

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daniella Newbie
daniella
Posted

About 3 months ago I thought I developed what was an overuse injury to my inner ankle/foot from exercise. I stopped the exercise but it didn't get better and so after a week then of being in bed with extreme pain I went to the orthopedic who put me in air cast and did bone scans/xrays that showed nothing. I was the refered to a neuro who did mri of brain/spine,doppler,emg all showed nothing.I had bloodwork which did show high liver enzymes which is most of my life and low white blood count but no one was concerned with that being an issue. Mean while months are passing the pain is worse and bed ridden. On a good day a few errands. I also went to the foot ankle specialist who thought it was tarsal tunnel I got 2 nerve block shots. I was started on lyrica,then to cymbalta,now to elavil. My pain is unbarable and gets worse each day as I spend more time laying even sitting hurts. This is through vicadin. Now I was refered back to the ortho who sending me for another mri onTues of my foot/ankle which the other was of brain/spine. I had for 12 years severe anorexia and was hospitilized many times. This past year I have become the healthiest I have been weight and behavior wise .All the docs are aware of the past . I'm wondering if its damage from the past now showing like a deficiency . The neuro did order a new set of bloodwork testing for nutrient deficiency on Mon.Could it be something in my diet that is building up now and causing issues like a gluten issue?I have ibs-c but always its been to the extreme sometimes had to stay in from the cramping,bloating,nausea.Some days from stomach pain and pressure I even have to stay in bed.I also drink so much like non stop but the bloodwork like I said just showed high liver enzymes and low blood count. I have low blood pressure too. I'm loosing my mind and the only thing all the meds and docs have done so far has made things worse. My pain is the inner ankle/foot. I sometimes have tingling and knife pains in the bottom of foot. Around the ankle feels like no circulation sometimes with small swelling. It also goes up to my calf where its tight. The inner ankle bone to even touch hurts and same with the foot/toes.I'm really worried. I'm 28 so not old. If I can help you all in any way let me know. I thank you regardles for your support. This is so lonely and confusing.

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ravenwoodglass Mentor
ravenwoodglass
Posted

It sounds like you may have a problem with gluten and that can effect the nerves. Have you been of the gluten-free diet? Do you take sublingual B12, if not get some and start on it.

The type of pain you are talking about, escalating burning pain also sounds a lot like a nerve disorder that can set in after even a minor injury. I had it after a knee surgery can't remember the exact name something like parasympathic dystrophy. I can greatly sympathize it took a long time and lots of PT for it to go away. I don't know if I would have healed quicker if I had been gluten-free, it would be another two years after this before I was diagnosed.

The B12 won't hurt but let them know you are taking it if they are doing vitamin levels checking on you again.

daniella Newbie
daniella
Posted
  • Author

Thank you. It has just been so long and basically I'm in bed most days from the pain.Thats why I feel its more then from an injury. They tried pt once with me and it made it so much worse so till they no the exact cause of this we stopped. I am taking a b complex pill.I just started that 2 weeks ago the foot/ankle specialist told me to.Is that the same is b12? I have bloodwork tomorrow. As for stomach issues like last night I was up all night in severe stomach pain as well. Always so much pressure and bloating with constipation though. I thought most celiac people have diareah. Could it maybe not an intolerance but sensitive? Also I was looking online but maybe a wheat but not gluten issue? I have no idea I'm so desperate for answers. So you have nerve damage from eating gluten or yours was from the injury? Maybe a combo? Anyways take care and thank you very much.

RiceGuy Collaborator
RiceGuy
Posted

As ravenwoodglass mentioned, the B12 should be sublingual. The methylcobalamin type is the one to get, just make sure it's gluten-free. Your B-complex isn't going to be as effective for the B12. Another thing which helped me with some of the issues you've mentioned is magnesium, so I'd highly recommend that too. A powder or liquid form will be better absorbed than a tablet.

HTH

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you. It has just been so long and basically I'm in bed most days from the pain.Thats why I feel its more then from an injury. They tried pt once with me and it made it so much worse so till they no the exact cause of this we stopped. I am taking a b complex pill.I just started that 2 weeks ago the foot/ankle specialist told me to.Is that the same is b12? I have bloodwork tomorrow. As for stomach issues like last night I was up all night in severe stomach pain as well. Always so much pressure and bloating with constipation though. I thought most celiac people have diareah. Could it maybe not an intolerance but sensitive? Also I was looking online but maybe a wheat but not gluten issue? I have no idea I'm so desperate for answers. So you have nerve damage from eating gluten or yours was from the injury? Maybe a combo? Anyways take care and thank you very much.

In the earlier stages especially people will often have C or alternate between C and D. I have wondered if this is the body trying to make up for nutrient malabsorption by hanging on to everything it gets for as long as possible.

If you have gluten intolerance or celiac the same area of your intestines that makes B12 and that is responsible for producing the enzyme needed to digest milk gets damaged. That is why you need a sublingual form, the vitamin needs to be absorbed through the mucous membranes of the mouth and bypass the intestine. I found one that had both the B12 and the magnesium in one tablet but I don't remember what brand it was, I just remember the silver box.

The nerve damage that I have that is permanent is from gluten. I have had ataxia since childhood along with other brain problems and was once thought to have MS as well as all the other nasty stuff I had been diagnosed with. It has gotten a lot better since I have been gluten free and I no longer have numbness, tingling or pain but the ataxia, although much better, is still there. The extreme reaction I had from the surgery on my knee was definately not helped by the undiagnosed celiac, whether it caused the PSD to set in or not I don't know.

daniella Newbie
daniella
Posted
  • Author

Thank you. I know in my blood work it said b12 test so will see. Like I have been up all night again with extreme bloating,cramping,but constipation.I'm so uncomfortable with the pressure. The constipation issue does make sense from what you say. I'm just waiting for the test results and my other mri result. I don't think my nerve issue would be so localized if it was a nutrient deficiency only but was thinking that it may have been a nutrient deficiency that made me more suspetible to injury and then super slow healing.Thank you again. I hope your all feling better. I see you guys have been through a lot as well and many misdiagnosis which is scary and frustrating I often wonder about docs.

Nantzie Collaborator
Nantzie
Posted

Before I went gluten-free, I had pain that was like sudden electric shocks in my hips and back. For the last 2-3 years of my pre-gluten-free years, I developed this to the point I could barely walk. If it wasn't for finding out about celiac as a possibility, my next doctor appt would have been to find out how to get a handicapped placard for my car rather investigating the gluten connection.

Now, the only time I get it is when I'm glutened. It's definitely directly related to gluten for me. I have some back problems now and then because I've got a little bit of scoliosis. But it's NOTHING like those shock pains I used to get. I don't even classify them in the same category. The scoliosis is structural and can be improved upon with physical therapy and/or chiropractic. Those shock pains were something else entirely.

When I'm glutened bad enough to get them, it makes me jump and gasp when it happens. I'm not used to them happening all the time so I'm not prepared for them coming on anymore.

I hope you figure out what's causing your nerve pain. It's surprising at first how many people have neuro issues here. After a while though, you realize it's relatively common around here.

Nancy

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mftnchn Explorer
mftnchn
Posted

I've had a lot of joint pain, but it isn't a major issue currently. I am new to gluten-free diet so not sure if this will improve yet again in the future.

What I noticed is that lyme disease was not ruled out in your story. That can cause both joint and neurological very severe symptoms.

But your severe intestinal symptoms seem to suggest gluten free might help. Perhaps you could consider a screening test for this. Both the fecal tests and blood tests take awhile. So maybe do one or more, then try the gluten-free diet? The response to diet may not be immediate either, but could be.

mftnchn Explorer
mftnchn
Posted

(posted twice by mistake)

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