Numbness, Tingling in limbs & Joint Aches

[Ender]

Six weeks ago, I went gluten-free. I only eat veggies (except nightshades), fruits (except bananas), and meat.  Most of my symptoms have resolved on this eating plan. I'm fairly regular now. My stools look normal compared to the Bristol Stool Chart. My intestinal gas is now mild and rare. My mild and intermittent abdominal pain is gone. I'm sleeping eight hours a night. I no longer have any shortness of breath or breathing problems. My memory problems are no longer so awful, and I can concentrate just fine again. My period seems to be getting back to normal, too. It was still light this month, but it lasted 5-6 days rather than 3-4 and my cramps were back in full force.  I'm almost off the bipolar meds too, which is good, since I'm pretty sure I never had bipolar in the first place and they are the major cause of my low sodium levels. 

I still have a couple of problems though, and I'm not sure what to do about them. I'm still having some mild, intermittent numbness and/or tingling in my left quad, both hands/fingers, and both feet/toes. Don't get me wrong, it's a LOT better than when I was ingesting gluten. But at times, my hands/feet will feel kind of warm and tingly...or cold...like they *might* fall asleep, even though they rarely do these days. On the other hand, my left quad still falls asleep nearly every day. However, the muscle isn't so horribly dead like it used to be when it happens and I get sensation back quite soon. I was trying to connect it all to food I've ingested, but I'm starting to wonder if it's not just background radiation (so to speak) until my body heals up.

A second troubling symptom has appeared recently too. I seem to have developed some joint aches and pains in my fingers, wrists, elbows, knees, and ankles. They're SORE and weak, especially when I wake up. My muscles are a bit sore too. Is it even gluten-related? Is it something else?  

I guess my questions are these:

1. Is continued mild neuropathy and/or the joint pain a sign of ongoing damage?

2. I've believed that being glutened is much worse than what's going on with me right now. This seems rather mild, so I'm not being glutened somehow, am I? I ask because I live with three roommates, and though we do not share ANY food or cooking pans/utensils, they don't clean up after themselves in the kitchen. I've been careful.

3. Could this just be background noise as my body heals, and should I stop trying to associate it with the foods I'm eating (unless it's a incredibly obvious bad reaction)?

4. Is it normal for joint pain to just appear after gluten-free? I thought gluten-free diets relieved joint pain!

5. If it's not normal, what other sorts of things could it be? I really don't think I have MS, lupus, or Lyme disease.

[cristiana]

Hi Ender

When I was diagnosed with celiac disease I had terrible tingling and buzzing going on in my extremities, particularly in my left foot.  It very gradually got better after sticking to a gluten free diet but also supplementation - iron (ferritin); B12 (sublingual methylcobalamin) and vitamin D.   I would get those levels checked if I were you as if you are out these can cause all sorts of weird symptoms.  I have been told B12 in particularly shouldn't just be borderline normal but in the 500s to avoid tingling.  I got muscle twitching too and read that I should be supplementing magnesium and I think that probably helped.   

The odd thing is from time to time these things come back and I really don't know why.  I live in Britain and our national health service, which is free to all, is under a lot of pressure and so there isn't a lot of money to spend on lots of proactive investigations.  My private health policy isn't that brilliant either in this regard so I don't know whether I will ever find out why I get these symptoms returning - sometimes for weeks or months at a time.  It has been suggested to me that it could be thyroid related.  

But having read around it a lot on dr google I think what might be happening in my case is cross-contamination, as careful as I try to be.    I also have just found out that my iron levels have dipped again so perhaps I am still not completely healed and need to supplement a bit more again (and I was dx'd in 2013, although as a woman low iron can be due to other factors).  

I would say it is early days yet but if you can get your levels tested at least you can see if you have any deficiencies - a good starting point.

 

 

 

[Ender]

Thanks for the information. I had some blood testing back in July. 

TSH: 2.680 (.450-4.500)

T4, Free (Direct) 0.81 (0.82-1.77) [It's a tad low, but none of the doctors who looked at my tests have been concerned.]

Iron (ferritin): 34 out of a 15-150 reference range. 

Magnesium: 2 out of 1.6-2.6

My B12 was low normal, but after 3-4 weeks of B12 shots, my level is now around 800. Unfortunately, the shots didn't help at all (in fact, my numbness/tingling got worse during that month). It did fix my anemia though (I had B12 related anemia).

My vitamin D was really low at 23%, but my doc had me supplement 4000 units a day from July to October. I only stopped when I went gluten-free since I didn't know what sort of extra junk might be in them. I have no idea what my level is now, but it should have gotten better. Just like with the vitamin D though, the numbness/tingling in my extremities appeared during this time (though my left quad had already been having issues for a year and a half).

In any case, I'm supposed get my B12, vitamin D, and blood tested again on Dec. 7th.

Sorry you're having problems with doctors. I don't really understand the British system of private insurance, but you'd think they'd be smart enough to invest in preventative care (not that our system is any better with that). Spend a little upfront to save a lot more later. I don't understand why these people are so short-sighted. 

[cristiana]

Hi Ender

Yes, a stitch in time saves nine as we say here - maybe you do in the States.   My cousin is a medical rep and says the billions that could be saved if money was spent trying to catch things before they became big problems....  I think I would be more proactive in trying to find the reason for all this myself if it weren't for the fact that the symptoms wax and wane.   At the moment I have no symptoms but a few weeks ago I could feel tingles and buzzing and thought if I held a light bulb it might light up!  

I am hoping here that someone else with a bit more knowledge will chime in but if someone has been starved of, say, B12, I am thinking that it may take some time for the nerves to mend.    

Can anyone else help here?

 

 

[icelandgirl]

Hi Ender,

Although you didn't get a complete thyroid panel, from what I see you are hypothyroid.  Most Dr's only care about TSH and yes yours is in the range, but when mine is that high I get terrible joint aches.  I feel best with mine around 1.  Your free T4 isn't just a tad low...most people feel best with it around 50% of the range.  I think you could benefit from some thyroid replacement medication.  You should also get a full thyroid panel...in addition to what you've had done a free T3, TPOAB and TgAb.   The last 2 are antibody tests.  Hashimotos is found fairly frequently with celiac.  

Low vitamin D can also cause aches.  It would be really good to have your levels checked again.  Until you are healed you may not absorb it well enough so it's good to keep supplementing.  It took me a year and a half gluten free to get mine to an acceptable level for my Dr and he's keeping me on 2000 daily for maintenence. 

For the numbness and tingling my Dr had me add magnesium as I was having horrible tingling in my feet and my B12 was good.  I have to say it has helped a lot.

I hope you are able to get this figured out...I would definitely start with a complete thyroid panel and recheck of Vitamin D.  Here's a bit of reading on thyroid stuff if you have time.  Hugs!

 

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[Ender]

So, my joint pain/aches, muscles soreness got worse after I wrote my original post. I  even ended up having breathing issues too for a few days (hard to describe). The breathing problems finally faded late last night though my chest still feels a little sore. My joints are feeling a little better too.

Unfortunately, I don't know what is going on with me. I've gotten similar joint pain/aches before recently, but it's been milder (perhaps a day or two at a time). It happened for over a week this time.  

At least I already have a doctor's appointment tomorrow. If anyone has an idea between now and 11/30 12pm CST, let me know so I can bug my doctor about it.

On 11/25/2015, 2:35:30, icelandgirl said:

...from what I see you are hypothyroid.

Thanks for the information, IcelandGirl. I found several articles on pubmed confirming the sort of numbers you mentioned (at least, where doctors should aim for when medicating patients!). I'll be sure to ask my doctor about my test results, perhaps she'll order a full panel.

[icelandgirl]

Hi Ender...I don't know if you get this in time, but push for the Vitamin D and full thyroid testing.  Ask for thyroid meds....with a free T4 below range you need it.  The only other thing I can think of is lupus.. I have a cousin who has it and I know that there can be a lot of pain involved.   But I'm not sure about anything else.  Do stress to your doctor how bad this feels, how severe it is.  Good luck and please let us know how it goes.

[Ender]

Well, since I mixed up the date of my appointment, I definitely got it in time.  

I go NEXT Monday. Luckily, I figured it out before I left! Oops!

My doc will already testing me for Vitamin D, B12, sodium/chloride, and doing a CBC or CMP (to check my anemia). I'll mention the thyroid test, etc. Hopefully, I'll see her BEFORE they take my blood.

In any case, I have a question about Lupus: does it just come and go? Same with thyroid now that I think about it. I'm feeling a lot better now. 

[cyclinglady]

15 minutes ago, Ender said:

Well, since I mixed up the date of my appointment, I definitely got it in time.  

I go NEXT Monday. Luckily, I figured it out before I left! Oops!

My doc will already testing me for Vitamin D, B12, sodium/chloride, and doing a CBC or CMP (to check my anemia). I'll mention the thyroid test, etc. Hopefully, I'll see her BEFORE they take my blood.

In any case, I have a question about Lupus: does it just come and go? Same with thyroid now that I think about it. I'm feeling a lot better now. 

Any autoimmune can flare up or calm down and that includes lupus.  

I would send an email requesting lab testing prior to your going.  It is worth a shot and I always do it.  Save time and it is documented.  

[icelandgirl]

Completely agree with cycling...email the Dr's office a list of the thyroid test before going...that way it's in there and you don't have to remember to ask about it.

[manasota]

Ditto to the idea of sending an email to get tested prior to the appt.  Love the documentation and it makes the appt. more valuable since you can discuss the results in person.  Cyclinglady rocks!