Neurological Symptoms

[SueC]

Hi Everyone,

I am new to this web chat stuff but I have been doing alot of reading in here lately. It has been very helpful!

My celiac was found quite by accident and out of pure desperation to find a reason as to why I feel so lousy! I have absolutely no digestive problems. Mine is totally neurological.It started with tingling in my hands and feet, muscle pain and burning, fatigue and severs headaches. My doctors first response was it may be MS. Why do they go there first?? My MRI was negative so we found celiac quite by accident. My bloodwork was positive(ttg=178, IgG=136, IgA=70). My endo confirmed it with complete villous atrophy.

My question to all of you who suffered with neurological symptoms, did they ever go away and how long did it take. I have beed gluten-free for 9 weeks and dairy free for 3 weeks. I feel ok some days but others it seems like it will never go away...especially the headaches.

sorry for rambling but wanted to share my background. Any positive advice is welcome. I am seeing a rheumatologist next week as my GI doc thinks I should be doing better by now.

Thanks for any imput.

Sue

[Guest nini]

I'm 2 years gluten-free and not all of my neurological symptoms have completely gone away YET, but I am hopeful they will. They are much improved. I haven't had a single seizure since going gluten-free, and I don't have the "brain fog" anymore. I still have numbness and tingling in my extremities... but it's not as bad. I guess what I'm trying to say is that it does get better, it just might take a while! Be patient and stick with the diet. This board is a very good place to go for support.

[Merika]

wow, it's great they found the cause of your trouble. My grandmother was tested again and again for MS, but the docs never found the celiac. My mother and I were diagnosed several years after her death.

9 weeks is just too short to see anything, IMO! I've been gluten-free for over a year now and still have mental and physical symptoms. I am much better, but I'm not 100% restored.

Give yourself lots of time. Mine got better, then worse, then better, then worse, and it was all very discouraging. But it's like that "2 steps forward and one step back" saying, though it did take 2 or 3 steps back on occasion. Overall I am better

This is a great board for info and stuff

Merika

[Guest BellyTimber]

Am still getting intermittent numb spells, slight loss of grip in one hand, and dizziness is if anything slightly worse.

BUT!!!!!

Am told by lots of people (including doctor) that I am better at communicating, and far more relaxed.

So on balance that's very good news.

(After 2 and a half years gluten-free)

Hang in there, we're all different, but life will be better perhaps in ways you can't forecast.

[BellaSara]

What about people with autoimmune problems? I am 22 and am diagnosed with sjrogens and rheumatoid arthritis. I also show signs of lupus, fibromalagia, and graves disease. After months of inconclusive blood tests I t stopped eating gluten. The fibromalagia was the first thing to go away, but I am still very tired and have lots of brain fog. I know gluten is the problem because when I eat it my joints get very achy and I get a low grade fever. Is there anything to speed up the process? Should I consider myself a celiac or do anything different?

[Guest imsohungry]

Bella Sara,

Hi there. I can truly relate to you. I'm in my late twenties, and I have a dx. of: lupus (SLE), secondary Sjrogen's, celiac...and the list goes on and on.

It is not uncommon with autoimmune diseases to come up with dx as "probable" or "inconclusive." Often, my bloodwork comes back "out of whack" in a different way each time! And my symptoms range the spectrum...seizures, memory probs, joint/muscle pain, dermatitis, migraines, allergies, food intolerances, intense fatigue, sleepiness, dizziness, weight loss, mouth ulcers, bloating, constipation, diarreah, esophageal spasms and ulcers and narrowing, optic neuritis, and the list goes on and on...

Do you have a family hx of autoimmune probs.? This may also give you a clue into your autoimmune difficulties. Even though your bloodwork came back "inconclusive" for Celiac, listen to your body. If you are experiencing a positive response by going gluten-free...follow that. Improvement in symptoms will take time.

Also, since I have gone gluten-free, many of my symptoms have improved, but NOT all of them. So, if being gluten-free makes some of your symptoms get better, just try to focus on having one less "pain" on your body. Hang in there!

[debmidge]

this is a puzzle for us: about 18 mos after going gluten-free; after being misdiagnosed fr 27 years, my husband developed pheripheral neuropathy in feet and legs, and now it's spread to arms......He's not getting any gluten in his diet and I know that as he eats basics and stuff like gluten-free Pantry that I make in dedicated bread machine, plain fish, chicken, potatoes, etc.

I guess the puzzle is why now AFTER he's been gluten-free? He had endoscopy 6 mos ago and villi are back to normal.

[watkinson]

Hi debmidge,

Are you 100% positive that he is completely gluten-free? What about shampoos, lotions, toothpaste, Medications? Maybe he also has a food allergy to something. I know corn makes my fibromyalgia and peripheral neuropothy act up. I had PN very bad for many years in my hands and feet. Numb and tingly like they were asleep. After being diagnosed a celiac and going gluten-free, it got better right away. It didn't go completly away for many months but got progressively better. Now it only happens once in a geat while. Like when I accidentally eat somthing with corn in it, or have accidentally been glutened. Example: I take Metimucil every night for colon health. I ran out and went to target to get more. I started having horrible fibromyalgia attacks and the Peripheral neuropothy came back. I couldn't understand what was going on until after about 6 weeks of this, I looked closely at the metamucil container. I had accidentally gotten sugar free without knowing it. It had aspertame and maltodestrin in it!! I stopped that night and by the next day was fine again. Check all his products.

Hope you get some anxwers soon,

Wendy

[blueshift]

A couple of things need to be mentioned here..

First, the brain fog is being dealt with very well in my case because of an experiment that I have tried and it is working out great..

The following experiment was suggested to me by an M.D. who runs a health store in my area and he is going to be getting me the paper work of the scientist who first discovered it.

Get a slow cooker. I have a Rival crockpot that is about 8 inches in diameter.

Go to your super market and buy some femur soup bones. They come in packages of 3 for about $1.35.

Put the bones in the slowcooker and JUST cover them with water. Too deep is no good. Your are going to marry the marrow with the water and make a jelly out of it. When 24 hours are up (no less), you take out the bones and put the remaining water into a tupperware container and set it into the fridge overnight. The next morning there will be a layer of white lard that will be right on top of the jelly and you pry it off and discard the lard. The jelly will be brownish somewhat but still transparent. One heaping tablespoon after each meal and make sure you use it all up by 5 days...Then get some more bones and do it again.

A couple of weeks after starting this my energy level went through the roof with my exercise routine and I finishing up things that I started with a passion..It is like a new toy.

I have been able to design some of my own experiements in connection with Einstein's field equations and the Schwarzschild geometry in General Relativity where before it seemed like all fog to get through..All my grey areas in my studies are disappearing faster and faster each week...

For the neuropathy? That does take a while. The neuron gaps have widened and the tissue in between needs to be destroyed..I invested $400 in a Rebuider kit from www.rebuildermedical.com . The idea is to send pulses of small electrical current through your feet via a foot bath and two probes sitting in water hooked up to a hand held generator. What is supposed to happen is that the pulses will burn through the fleshy gaps and burn a pathway for the neuron to grow back into. It has three settings. One for the nerves. One for the muscles and another for healing swelling due to turned ankles and other injuries.

I just bought it last fall and it is still too early to tell how well it is working. I do feel better but a lot of the cardboardy feeling in my feet is still there...just not as intense. I do not wake up with severe twitches anymore. I do think it will still take a while on this experiment. Plus, I have been dragging my butt on it due to the brain fog but I am recently been getting on with it again thanks to the bones experiment.

The bone thing? Wow! Everything is getting done and meny things at once to top it off! Headaches have not occured since the big kick set in a week ago..I really recommend it..

The scientist was investigating its effects on blood circulation and wasn't aware that it would go after the brain and the gut as well. This comes on the heels of anthropologists investigations into the possibity that human brains evolved very rapidly right after tool development aided ancient homonids in the capability to scrape out the rich fats of bone marrow..While they concede that other processes and causes were at work, they feel strongly that bone marrow is great brain food..

[cdford]

Check with your neurologist to see about how long he believes it will be before you see real progress. I was fully wheelchair bound (and sometimes bed bound) until the celiac disease was diagnosed.

I began to see real progress with the neurological symptoms after several months. The doc told me that we would have a good idea of how much regeneration there would be after around two years. Unfortunately I was severely glutened by a well meaning person and was set back by at least a year. Even so, the brain fog is better and I can feed, clothe, and bathe myself again. I rarely have to have assistance doing the basics of life now. I am beginning to use a walker some again and hope to someday walk. The neuropathy was the last thing to mediate but it was also my worst symptom.

Of note is that my endocrinologist has told me absolutely no soy. According to him current research appears to be leaning toward a soy component being the problem in celiacs with neurological concerns. That was a harder transition that getting rid of the usual four grains. The effort has been worth it.

Now if I can just get the fatigue and FMS under control...

[blueshift]

Of note is that my endocrinologist has told me absolutely no soy. According to him current research appears to be leaning toward a soy component being the problem in celiacs with neurological concerns. That was a harder transition that getting rid of the usual four grains. The effort has been worth it.

cdford,

Thanks for the information. These comments about soy might be worth looking into on my part since I was a vegetarian for years and downed soy products by the tons. I have even noticed a reaction to soy milk I have been getting that I may have falsely attributed to something I ate prior to drinking it down.

[cdford]

Yeah, I know about using the soy a lot. We used soy protein drinks and meal replacements, our vitamins were soy based, etc. Being "that age", all the women's products are soy based. Oh well, hot flashes are not nearly as bad as neuro problems.

[dancer5678]

Hello,

My brother was diagnosed with celiac disease one year ago. He was suffering from all the GI symptoms and is finally feeling much improved after being gluten-free for one year. My parents and I all had the genetic testing and it came back that my dad, brother and I all have the DQ8 link and its positive. They told me that I have a high potential for developing celiac.

For the past 9 months or so, I have felt horrible. My symptoms include back aches, burning pains in my low back and knees, shooting pains all over, light headed, periods of vertigo, blurred vision, pain in my eyes, tingling in my feet and calves (mostly left side), Muscle twitching all over, and heart palpitations. I also have rippled finger and toe nails.

I have been tested for everything under the sun, such as MS, and I have had every possible MRI done. I have had lots of blood work and also the celiac blood work. My blood work came back negative for celiac but my IG levels were all extremely low, and I never had low IG levels before in my life. (I am currently 20 years old)The dr. told me that can happen when your IG levels are very low the celiac blood work will throw false negatives. He told me to stick to a strict gluten free diet. My next step is to see a GI doctor.

I have been gluten free for 13 days now and feel hardly any improvement. The only thing I have noticed is the heart palpitations have stopped. The last few days I feel that the symptoms are almost worse.

I was wondering how long it takes too feel better after going gluten free having neurological problems? My brother felt better improvements instantly with his GI symptoms. If anyone can relate to this or has any input please reply!!!

Thank you!

[lucia]

Interesting conversation ... as someone with peripheral neuropathy, I've been paying attention to medical research about it in celiacs. Medical research supports that it exists in celiacs, but have no idea how or why it goes away - or not, which is sometimes the case for people.

After 3 and 1/2 months on a gluten-free diet, I was still suffering painful neuropathy. I've started a modified elimination diet that includes no processed foods and no major allergens. In just a couple of days, my neuropathy cleared substantially for the first time. Then, last night, I broke down and had "just a little popcorn" -

today I woke up and the digestive issues AND the neuropathy is back. It must be that I'm reacting to CORN.