Perhaps I was a bit hasty? Numbness, Tingling?

[Ender]

I received my test results last week. I don't have celiac, but I know not everyone here is celiac. I thought perhaps someone else might have experienced the same issues. Has anyone else dealt with numbness and tingling in their hands, feet, and legs before going to gluten-free? How long did it take for it go away? Mine isn't due to low B12 like I thought. My B12 is great after 3 weeks of injections, and my blood counts are better. So what is causing this and how do I treat it? My doctor is no help at all.

After getting back the blood test results, I assumed my troubles were due to food since I do better for a day or two, then I'm ill again (with the numbness/tingling and insomnia and sometimes D). I assumed the culprit might be soy. I bought all soy-free stuff at the grocery store and added wheat back in, telling myself all this crap with wheat/gluten was in my head. I got sicker the same night. Really sick. Since I'd been keeping a food diary, I tossed all my data into Excel and plotted each symptom against foods (like soy, wheat, milk, nightshades, etc.). The only thing that fits (with a subset of my symptoms) is wheat/gluten. I have symptoms for about 2-3 days, then I feel better (symptoms begin with stomach pains, then gas, numbness, tingling in limbs, then D, etc etc etc). That progression held up again, since it took from Saturday night until Monday for [most of] my symptoms to fade. Monday kind of sucked though since the numbness/tingling moved from my hands/feet to my FACE! Basically my right ear, skull, jaw, and lower lip felt like I'd had dental work and the numbness shot was wearing off. I've never had it in my face before. It scared me a little.

In any case, I've eaten gluten-free since Sunday morning. I thought it really was helping, but today I'm not sure. My symptoms have been milder in the last few days, but last night, it felt like my hands/feet might fall asleep again. Only my leg did (I woke up to it). Now, that's a heck of a lot better than it has been, but today, my fingertips and feet seem like they're on the verge too. So...I don't know. Maybe I'm not getting better at all and it's going to hit me again. I can't help thinking it's not gluten that I'm allergic too, but something else I'm reducing by cutting out the gluten. Sulfites? Corn? Every time I look up numbness/tingling and food intolerance, I get little else but gluten hits. Wouldn't all this numbness and tingling be gone by now if I was gluten sensitive?

This weekend I'm going to the store and buying nothing but potatoes, meat, salt, and fresh vegetables to steam. If it doesn't go away after that, then I don't know what else to do. My doctor just wants to give me an IBS med, two inhalers (for my intermittent breathing problems), sleeping meds, and an ultrasound of my abdomen "just in case." It's so frustrating. I've told her several times, I don't want to cover up my symptoms. That's all she seems to want to do though. None of that is going to do anything for the numbness/tingling I'm experiencing. She hasn't addressed it at all.

So...follow-up question. What kind of doctor do I go to next that will know what to do?

[sarahluther]

Hey there, just wanted to send over a quick reply. I was diagnosed back in May. One of my symptoms was in fact numbness and tingling in my hands, legs, feet, etc. I actually have an awesome doctor, she isn't one to throw drugs at you, she wants to figure out what is wrong. So, before my appt, I did research, wrote down all the problems I had been having for 3.5 months, and what tests I wanted to be done. I really thought I had a thyroid issue, runs in my family. Gluten was the very last thing that I put on my list, because I was sure that wouldn't be it. Turns out, that IS what it was. Now, I don't have any of my health problems, I have returned to my normal life (except for that whole pesky watching what you eat stuff). I DO get the numbness back though now when I have been accidently glutened, and it is almost always my jaw. So, yes, that does happen.  I hope that you are able to find a solution to your problems, living like that really is terrible. Maybe it is time to find a new doctor instead? Good luck!

[mommida]

Are the areas of numbness cold?  Do you have any other signs of poor circulation.  (fine "mushy" hair, messed up fingernails, cold feet/hands that turn blue/purpleish)?

[Ender]

sarahluther, thank you for responding. How long did it take for the numbness to go away? What kind of doctor did you go see? I've been going to a regular, family doctor, but I don't know if I should find another general doctor or some sort of specialist instead.

mommida, thank you for responding, too. I do tend to have cold hands and feet unless I have my heater on (my heater is usually on ). I don't know what "mushy" hair is, but my hair has always been fine (it runs in the family). My fingernails are strong as hard plastic though and none of my skin turns purplish or blue. Nothing "looks" wrong with any part of me that does this numbness/tingling thing. No swelling or redness or anything. I can move the body part too even if my finger or whatever are completely numb. I do have control of them, it just wakes me up when they go dead so my sleep is awful as a result. I will say that I have noticed that the tingling is a warm kind of tingling. I suspect I notice it now because they aren't actually falling asleep as much and I'm trying to be more specific for my food/symptom dairy.

[sarahluther]

Ender, you know- I can't really tell you how fast that symptom went away.  Honestly, it was the least of my worries- I had been nauseous, exhausted, having vertigo spells, & was severely arthritic for 3 months straight, so the numbness went away without me really noticing.  It was one of those lightbulb moments - "hey, my extremities aren't falling asleep anymore!"  It has been 6 months now and really, life has gone back normal.  I have almost shed the 50lbs I mysteriously gained and things are good.  I just have a regular doctor, started seeing her for depression issues.  Guess what I also don't have a problem with anymore now that I have cut out the gluten, yeah- the depression.  Amazing how something can really wreak havoc on your body.  I feel like a lot of doctors just don't know that much about it.  My mother has a ton of the same symptoms.  I told her that she needs to be tested, seeing how there is a genetic component to it.  When she asked, her doctor said "Do you have frequent diahrea?"  When my mom said no, her doctor simply told her that she doesn't have it.  I didn't have the D, I was just always constipated.  So, maybe just kind of do some research, find a doctor that might work a little better for you.  If it takes someone that specializes in digestive issues, then so be it!  I wish you the best, Ender! =)

  

[bartfull]

Studies have shown that folks with non-celiac gluten intolerance are MORE likely to have gluten ataxia and other nervous system problems from eating gluten than folks with actual celiac. And it takes a long long time for those problems to go away. On top of that, the folks who have these problems are much more sensitive to gluten. You need to be really really strict and avoid cross-contamination at all cost.

[Ender]

sarahluther: Thanks for your personal story and well wishes. I'm glad you're feeling better.

bartful: Well, damn.  Supposing this is a gluten issue, then I guess I should be glad that I'm having any sort of relief then and give it some time before I decide it has to be some other food causing my issues. I'm lactose intolerant, so I just assumed that this would work more like when I have a bit too much dairy, though maybe the symptoms would ease in a week rather than a few hours.

I started this gluten-free experiment on Sunday by being rather strict, far more strict than I thought I needed to be. However, I did make one mistake that I know of. I looked everything up on celiac boards before I went to the grocery store, including this board, to see if things were safe, but some bbq sauce slipped past me. Ergo, it had some Worchester sauce and distilled vinegar in it. I got ill that night (thought it was far more mild than it has been). Everything else I ate that night was safe according to what I found online. I chalked that one up to me making a mistake. I don't have a reason for the numbness and such today though. I'm doing some reading up on gluten neuropathy now. Thanks for the information.

[Ender]

I had a really good day today. I felt perfectly fine actually, for the first time in....ages.

I don't want to jinx this, but In case someone is reading this in the future looking for info, it took about a week of gluten-free eating for a lot of my symptoms to fade. The caveat is that I only experienced the worst of this for the last few months and I'm not actually celiac. 

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ETA: I shouldn't have jinxed myself. *sigh* I'll come back and update this post when I've managed to go an entire week without symptoms.

[Ender]

Sorry for the spam in this thread. I can't seem to edit my last post and add this.

Turns out my issues towards the end were that I'm also sensitive to corn. Gluten-free cereal (made of corn meal) triggered the first reaction on Thursday. I triggered another one the next day by consuming orange juice with calcium lactate. If you came to this thread looking for information about own troubles, then I hope this info helps!!!