Recently Dx - A Ton Of Neurological Symptoms

[justChris]

So I was Dx 2 weeks ago. Been trying to figure out the root of all my problems over the last 6 months and I hope this is it. Started with just getting tired walking up the stairs or doing something part of my everyday routine to where it has progress with all the neurological symptoms I mention below. However, I find myself a little skeptical that this disease is causing my muscle pain, joint aches, muscle wasting, muscle spasms, twinging, numbness, fatigue, and general feeling of not wanting to do anything outside of sitting in the house and relaxing with my wife and 9 month old. Not having any of the stomach issues and GI problems I'm sure is a blessing, but has anyone else just exhibited these severe neurological symptoms? Same day I was also Dx with extremely low testosterone (dr said it was lowest he's ever seen for someone my age [36]). My theory is the low vitamins/minerals caused problems with the pituitary gland thus not producing enough testosterone and thus compounding the neurological problems I'm having from the celiac.

I expect that I have a ton of vitamin and mineral decencies due to the celiac and have started taking a gluten-free multi-vitamin for the last few days. Really want to see if others with these neurological symptoms can shed any light into this for me.

Thanks in advance,

Chris

[Sarah1122]

I am very new to the world of Celiac Disease and I am positive many others here can shed more light on this topic than I can. But I will say, in a short period of time, I have found that this disease will do unbelieveable things to your body, especially if you have had it for years (as many of us did without even knowing it!)the damage done is amazing.

I have experiance ALL of the symptoms you are describing - getting out of bed is a challenge, I am so exhausetd. My legs feet and hands are constantly numb or tingly, and my muscles and joints are so sore, just brushing my teeth is painful and exhausting some days. Just this weekend, everything hurt so bad I simply could not move - my boyfriend said that when he looked in my eyes that day, they looked like they were 100 years old; he could read how much pain I was in.

I was only diagnosed 5 months ago - many symptons have improved (GI mainly) and I am seeing a specialist in 3 weeks to discuss all of this more in depth, so I cannot tell you for sure they are all linked. But I have read on this site that so many other go through these same things you are describing, so I would not be surprised if your symptoms are all linked too. Either way, you should talk to a doctor about this (A celiac specialist if possible, since so many others just do not understand this disease!)

Good luck on your road to recovery!

[justChris]

Thank you. When you said "My legs feet and hands are constantly numb or tingly, and my muscles and joints are so sore, just brushing my teeth is painful and exhausting some days." this could not have hit home for me. Good to know all those trips to the neurologist were not me being crazy - b/c I'm sure they think I am.

These neuro symptoms are so brutal. Im such an outdoors person in the summer and I can count on 1 hand the amount of time I have spent in the yard or at the park etc. I just want to get back to normal. Don't care about dealing with the diet - it is a change, but one that can't hurt.

Like you said - who knows how long I've been dealing with this - could be months or years to get to the point I'm at.

Either way glad I found this site - going to spend a lot of time reading.

Chris

[cadillac19]

I have spent my entire life feeling exhausted, literally. I thought that when I was diagnosed with sleep apnea, my fatique would go away, it hasn't. I thought when I was diagnosed with Celiac (last September) and stopped eating Gluten, I would feel better and have more energy. For the most part, I don't. I have headaches, neck and shoulder pain, memory loss, clumsiness. I have peroneal nerve dysfunction in both legs, and the muscles in both calf

[Sarah1122]

Wow - JustChris, again I am feeling the same way as you described - I am a summer girl, always spending every possible moment outside, soaking up the heat and the sun and I LOVE summer nights - the crickets, the stars, the warm breeze - it is heaven! Two weeks ago, my dog had to go

[dilettantesteph]

I also experienced neuro issues. Fatique, joint pain, muscle weakness, numbness, couldn't think straight, couldn't remember anything, plus half crazy, irritable, blurred vision, my eyesight went from 20/40 to 20/20. I also had GI symptoms. The neuro symptoms took longer to go away than the GI ones. Maybe a couple of months. Hope you'll be feeling much better by then.

[ravenwoodglass]

I had neuro issues since childhood but they got really bad after my last child was born. I didn't have much gut wise that I considered an issue just occasional constipation and a constantly grumbling tummy. That did change though and as things progressed both neuro and gut wise I don't know how many times I heard 'there's nothing wrong with you here have a prozac'.

I even had multiple brain lesions that in other countries would have diagnosed me but here my neuro said 'lots of people have those they don't mean anything'.

I am glad you got diagnosed finally, it took a total of over 40 years for me. The last 15 were hell on earth. Do be patient with your body and be sure you are strict with the diet. Read as much as you can here about what you need to do to keep safe at home and go with fresh, unprocessed foods for awhile as that will help prevent CC issues which could set you back. Sublingual B12 can be helpful in getting the nerves to repair but it does take time. It was about 6 months gluten-free before most of my issues were resolved but I did see some progress before that.

[justChris]

thanks everyone. kinda nice knowing others are going through the same neuro problems. well maybe "nice" is the wrong word. Lets go with "comforting". Happy to hear there is chance these symptoms will go away. Can't wait. I've got a lot of vacation time i want to use. im most look forward to doing anything outside - even if its in december shoveling 2ft of snow - id be thankful for that.

continued luck to all - not easy but def much better than the alternative....

[ReikaMindy]

I too had many of the neuro symptoms mentioned above, including incontinence. Many of my symptoms (muscle/nerve pain, fatigue, possible Reflex Sympathetic Dystrophy, memory problems) were attributed to a bad car accident 10 years ago that did indeed leave me with soft tissue damage (including documented damage to the root of the sciatic nerve). I got better but very slowly, but then got worse about 4 years ago. I then additionally had panic attacks and severe depression (which improved with taking massive doses of fish oil).

To make a long story short, once I went off of gluten, my neuro symptoms disappeared first, and really quickly too (possibly because they were the last symptoms to show up?). During my worst years of pain (the first two after the accident), I had noticed that glucosamine supplements helped.....a lot, and I had severe pain every time I tried to stop them (the brand I was taking was rather expensive at the time).

One of the books I had read (The Gluten Connection: How Gluten Sensitivity May Be Sabotaging Your Health--And What You Can Do to Take Control Now by Dr. Shari Lieberman Ph.D. CNS) was most helpful when discussing supplements, and she recommends taking glutamine (the amino acid which is precursor to glucosamine). I decided to also supplement with glucosamine since it had worked so well in the past. She explains that glutamine is necessary for proper function of various parts of the GI tract.

Here's another piece of information that I found on Wikipedia:

Producing and consuming organs

Producers

Glutamine is synthesized by the enzyme glutamine synthetase from glutamate and ammonia. The most relevant glutamine-producing tissue is the muscle mass, accounting for about 90% of all glutamine synthesized. Glutamine is also released, in small amounts, by the lung and the brain. Although the liver is capable of relevant glutamine synthesis, its role in glutamine metabolism is more regulatory than producing, since the liver takes up large amounts of glutamine derived from the gut.

Consumers

The most eager consumers of glutamine are the cells of intestines, the kidney cells for the acid base balance, and activated immune cells

While going gluten free helped my muscle pain, taking glutamine and glucosamine made an even bigger difference. I did also discuss this with my internist. He admits that he is not knowledgeable about Celiac Disease at all, but he is happy that I run stuff by him. So far he has not been negative about anything that I've tried. I sometimes wish he were more aggressive with treatment and/or referrals, but the upside is that he is very willing to listen to me and to try alternative treatments.

One other thing, I stumbled across something this week (I thought I had bookmarked it but can't find it) that reported a study which showed that recovery of the intestinal lining may take longer than previously thought. It was thought that it took 6 months for children to recover and 1 to 2 years for mature adults. However, indications are that it is 1 year for children and 2 to 3 years for adults.