Well I'm Back

[GirlScout]

I haven't been on this board for quite some time. Mostly because I was having some very interesting symptoms that stemmed from a very bad fall on ice this winter. My Dr, Internal Med Specialist and Neurologist all suggested I might have MS. I also remember reading about how people with MS are mistakenly diagnosed as Celiac. I figured I was one of those. But finally after all my MRIs, I do not have MS (or what my Neuro said, you have not yet developed MS - I'm guessing to cover her butt in case I do). However, I have classic symptoms of another condition that I'm being tested for, Peripheral Neuropathy. I decided to google it and Celiac together and found multiple articles of the relationship between the 2. I have to admit that I never thought I had MS. I had read about peripheral neuropathy when I was first introduced to MS, and felt that the symptoms I have are more in-line with it. So now I've decided to come back to the Celiac boards once again.

So, has anyone else found/read/or have Celiac and Peripheral Neuropathy or another condition? For me the symptoms co-related with car accidents, work stress, pregnancy/childbirth, and now this bad fall. And I'm finding it so interesting that undiagnosed Celiac can lead to all sorts of other conditions. And I'm glad that there is so much more information available even from the last couple years! I've been gluten-free for 4 years now (when I was 1st diagnosed), and I'm amazed at all the gluten-free sections in grocery stores, and gluten-free menus in restaurants.

Anyway I just wanted to say hello again! I'm back! And wishing everyone well!

Amanda (aka GirlScout)

[sreese68]

Peripheral neuropathy is what lead to my diagnosis of celiac. I've had bouts of tingling on and off for 20 years. The last 2 years have been bad. I had carpal tunnel surgery in both wrists due to the intense pain in my arms. (Before I found my current neurologist who was the one who diagnosed me with celiac.) My GI symptoms are relatively mild. When I eat gluten, I react neurologically for the most part.

The neuropathy can be from vitamin B12 deficiency or it can just be from gluten attacking your nervous system. It's a good idea to get your vitamin levels checked to be sure. If they're on the low side of average, supplementing may still help. My neurologist says that the minimum acceptable level is too low for some people.

[GirlScout]

Hi sreece68,

Thanks for the reply. I had never heard of peripheral neuropathy till this year. Looking back, I've probably had it for a while. I too had carpal tunnel syndrome in both wrists in my late 20s. However new symptoms started showing up after having my kids & seemed to get worse... maybe with age? I'm 42yo. I'm sure my last Dr thought I was a hypochondriac, and the Internal Med Specialist he sent me too was a complete quack. Glad I moved from BC to Alberta (Canada) so I got a new Dr that took me seriously. I think the hardest part is I use to be very athletic, but now I can barely run, and I loved to run. I walk now with hiking sticks for balance, and do lots of core exercises. I do what I can to keep muscle tone, but it's just not the same... I get so tired so easily. I'm also big on my supplements. I take calcium/mag, multi-v with 18 mg zinc, 5,000 ui D3, and B12 & pre-biotic & pH balance. I've been tested for all deficiencies, and they always come back within the proper normal ranges. Thanks for asking. I know how important it is to be on top of your vitamins & minerals with Celiac (or any autoimmune disorder). Do you take any other meds? They have me on Amitriptiline that helps with the numbness and tingling. I've been dealing with this constant numbness/tingling/pain from face to fingers to toes this time for a steady 6 mths now.... it's getting a more than a little annoying , but just gotta keep pushing on.

Wishing you all the best,

Amanda

[ravenwoodglass]

Hopefully you have checked all the meds and supplements you are taking to be sure they are gluten free.

What is your diet typically like? If you haven't tried going with a pretty much whole foods unprocessed diet for a while you might want to do so. Those of us that have neuro problems from celiac, like the folks who were mistakenly diagnosed with MS when it was really celiac, usually need to be very strict to stop the antibody reaction in the nervous system. It can also take some time for the nervous system to heal. It is not unusual for celiac symptoms to become worse after a severe stress like an accident or illness. So that is pretty normal for us.

You may still be getting small amounts of gluten somewhere, the reason for the suggestion to go with whole unprocessed foods for a bit. Not all companies put in plant CC risks on the labels of foods and even small amounts of CC can keep the antibodies active.

[GirlScout]

Hi Ravenwoodglass,

Thanks for your concern over hidden gluten in my supplements. As my business deals with natural and holistic therapies, I am very well aware that there are no hidden glutens in my supplements. I do not buy my supplements from vitamin stores. Both my MIL and I are in the health and wellness industry and deal directly with the naturalceutical companies that provide us our supplements. Also my diet consist of whole foods. I bake my own breads (I don't eat a lot of bread or crackers etc) with gluten free ingredients & uncompromised baking dishes. I actually follow the Eat-Clean diet (gluten-free) by Tosca Reno. I haven't had problems with Celiac disease so much as lately with the Peripheral Neuropathy, which can relapse due to in my case, the bad fall on ice I had. They also found herniated disks in my C-spine, and I'm sure they'll find the same in my back when that MRI comes around in Nov. But Peripheral Neuropathy and Celiac go hand in hand, as do many other conditions, as we are becoming more and more aware of.

Thanks again, and wishing you well,

Amanda

[Kim69]

Hi girl scout. I have been scouring the ms forum since I feel that my symptoms are suggestive of ms. I have had tingly, weak and sore fingers (all of them) and now my hands are affected.

I also have bad neck and shoulder to head pain.

And what I believe is triginal neuralgia (intense nerve pain) in my ear.

And fatigue. Sooooo tired and heavy.

celiac disease isn't a problem I think. I feel I am getting on top of my diet at last!

What are your symptoms Amanda?

[Kim69]

Forgot to mention that lately I have been having leg and body spasms that wake me up at night.

[adab8ca]

My main symptoms are peripheral neuropathy that go SO bad in my feet, I thought I was going to end up in a wheel chair. It felt like I was being stabbed by ice picks, my feet couldn't touch tbe bed nor could the covers touch my feet, I had a complicated system of pillows to prop my legs up.I do not believe that mine is vitamin deficiency, I tend to get flare ups when very tired or stressed but I have seen HUGE improvement, although I have been 10 months gluten-free. I even get it in my tongue, it burns and hurts and feels wrong.My celiac was diagnosed by accident by a neurologist who ran 1,000,000 tests to rule out stuff and shockingly, my Celiac antibodies were off the charts and after the biopsy, the GI doc said he saw damage with the naked eye, it was definitely celiac.

Interestingly, I had terrible panic attacks and anxiety and there is some school of thought out there that Celiac is a neurological condition.

About 50% of neuropathies have no obvious cause but I believe about 15% of those are actually from Celiac.

Have you been tested for Celiac? Are you gluten free? If you google gluten and peripheral neuropathy, there are lots of articles indicating that gluten can be a cause for some people.

Good luck!

[erinecox]

I've also had issues with peripheral neuropathy. MS came to mind when I was researching but I just tried b12 injections first. I had some bloodwork done last week and my b12 levels were off the chart high BUT if I go more than a week or so without it, the neuropathy comes back. So, that said, just because it shows "normal" doesn't mean it's enough. Plus, my research shows sublinguals are no more effective than pills in someone with malabsorption issues. I'd go for the shots.

I buy mine from an place online. Message me for the site, I don't want anyone to think I'm posting to push a website since I'm new here. They have a dr on-staff who apparently will give you a Rx with a brief survery. I did 1ml once a day for 2 weeks before the neuropathy went away. I now have to do 2 doses per week to keep the neuropathy at bay. Don't worry, you can't take too much, it passes out in your urine.

[Kim69]

B12 - that's really interesting. Am glad it has worked for you. My b12 is normal and it didn't occur to me to take supps. Not sure if my dr would agree to b12 shots.

I am booked to see a rheumatologist in a couple of weeks. I will certainly keep your story in mind. Thanks!