Weird Symptom: Tingly Legs?

[buffettbride]

DD has been gluten-free since May and only a few glutenings since then. Most of her symptoms before were non-GI related and mostly behavior related and leg pains. Going gluten-free has taken care of most of this.

Until this week.

She has complained of her legs feeling tingly and in pain, as though her legs had "fallen asleep" a lot of the time.

She has had a bit of a cold with headache and ear pain, but we just treated it with Jr. Tylenol Meltaways (grape) and Children's Sudafed liquid and that part seems to be doing better today.

Has anyone's kiddo experienced "tingly legs" even after being gluten-free with no recent "glutenings"?

I keep thinking perhaps the table where she eats lunch at day camp is contaminated from the person who ate there before (or any number of surfaces she touches away from home w/ gluten) and maybe isn't being as good a hand-washer as she could be and is getting CCd that way. No gastro symptoms, but could be enough to trigger tingly legs. I dunno. That is just a mom's guess of course!

[Guest Doll]

Assuming this is not due to CC or lingering neuro issues from Celiac, she needs to be tested for:

-Pernicious Anemia (an autoimmune disease more common in Celiacs that requires B12 injections)

-Vitamin and electrolyte deficiencies (oral B12, bananas, and Gatorade can help here).

-Autoimmune hypothyroidism. Again, more common in Celiacs.

Her doctor may also want to test her for other neurological conditions *if* this becomes a larger issue and all other tests are negative.

All of that said, rule out things like "mechanical" causes, such as sitting with crossed legs, etc.

Even a lack of oxygen (allergies, anxiety, asthma, a cold, etc) can cause tingling in the arms and legs.

[buffettbride]

Assuming this is not due to CC or lingering neuro issues from Celiac, she needs to be tested for:

-Pernicious Anemia (an autoimmune disease more common in Celiacs that requires B12 injections)

-Vitamin and electrolyte deficiencies (oral B12, bananas, and Gatorade can help here).

-Autoimmune hypothyroidism. Again, more common in Celiacs.

Her doctor may also want to test her for other neurological conditions *if* this becomes a larger issue and all other tests are negative.

All of that said, rule out things like "mechanical" causes, such as sitting with crossed legs, etc.

She's been reporting the tinglies for about 3 days now. The first day being the worst and gradually subsiding through today. I s'pose I'll keep my eye on it and head to the doc if it persists, even mildly. She was actually at the Dr. today just to have her ears and throat checked after week-long cold symptoms, but we saw a PA that I'm not super fond of so trying to broach "tingly legs" with him would have been a moot point.

[buffettbride]

Even a lack of oxygen (allergies, anxiety, asthma, a cold, etc) can cause tingling in the arms and legs.

Certainly could have been "cold" related or even seasonal allergies (although she's never been tested).

I'm so worried about all the "extras" that come with Celiac sometimes it's hard not to be sure it's something Celiac related especially since the first night with the tinglies was very reminiscent of the nights she spent crying most of the night because of leg pain (pre gluten-free).

[Guest Doll]

She's been reporting the tinglies for about 3 days now. The first day being the worst and gradually subsiding through today. I s'pose I'll keep my eye on it and head to the doc if it persists, even mildly. She was actually at the Dr. today just to have her ears and throat checked after week-long cold symptoms, but we saw a PA that I'm not super fond of so trying to broach "tingly legs" with him would have been a moot point.

I wouldn't *worry* at this point , but I would if it keeps up or gets worse. The above are just possible causes aside from CC. You might want to give her paper plates to eat off of from home. I can only imagine how hard it is for you to keep her gluten-free while not at home! Kudos to you and know you are not alone! I know how hard it is for me, and I am aware of what I need to do!

Could she also be having "growing pains" but describing them as "tingly"?

I hope she feels better soon!

[EBsMom]

Has anyone's kiddo experienced "tingly legs" even after being gluten-free with no recent "glutenings"?

I can't remember - is your dd dairy free as well? I was just talking to someone whose child had joint/leg "issues", which resolved after removing dairy from her diet. Not that I'd advise removing diary unless you HAVE to....I find it more restrictive in my dd's diet than no gluten!!!

Rho

[blueeyedmanda]

I noticed this happened to me when I started to take Allegra last year when we got our long haired cat. Eventually I got used to the cat and didn't need the Allegra anymore and the feeling went away. This past spring my allergies were acting up again so I started the Allegra and a day later there was the funny feelings. For me it was linked to a medication.

[katerimom]

I could be wrong, but are Tylenol Meltaways gluten free? I haven't ever seen them on a gluten-free list. I know the regular chewables are gluten-free but thought the meltaways contained gluten. Does anyone else know?

[Lisa]

DD has been gluten-free since May and only a few glutenings since then. Most of her symptoms before were non-GI related and mostly behavior related and leg pains. Going gluten-free has taken care of most of this.

Until this week.

She has complained of her legs feeling tingly and in pain, as though her legs had "fallen asleep" a lot of the time.

She has had a bit of a cold with headache and ear pain, but we just treated it with Jr. Tylenol Meltaways (grape) and Children's Sudafed liquid and that part seems to be doing better today.

Has anyone's kiddo experienced "tingly legs" even after being gluten-free with no recent "glutenings"?

I keep thinking perhaps the table where she eats lunch at day camp is contaminated from the person who ate there before (or any number of surfaces she touches away from home w/ gluten) and maybe isn't being as good a hand-washer as she could be and is getting CCd that way. No gastro symptoms, but could be enough to trigger tingly legs. I dunno. That is just a mom's guess of course!

Doll had some very good answers. I am having the same symptoms currently. Is you daughter very thin, with little padding on her legs and bottom. This is me. When I sit for a short period of time of cross my legs, I get the "falling asleep" feeling. It is a nerve problem and in my case some weight gain will help me.

[buffettbride]

I wouldn't *worry* at this point , but I would if it keeps up or gets worse. The above are just possible causes aside from CC. You might want to give her paper plates to eat off of from home. I can only imagine how hard it is for you to keep her gluten-free while not at home! Kudos to you and know you are not alone! I know how hard it is for me, and I am aware of what I need to do!

Could she also be having "growing pains" but describing them as "tingly"?

I hope she feels better soon!

I might not have mentioned home is gluten-free as well, with rare exception when her little brother has oatmeal but we essentially put him into confinement when he does.

[buffettbride]

I can't remember - is your dd dairy free as well? I was just talking to someone whose child had joint/leg "issues", which resolved after removing dairy from her diet. Not that I'd advise removing diary unless you HAVE to....I find it more restrictive in my dd's diet than no gluten!!!

Rho

We don't restrict dairy with her at all, but she's not fond of dairy products. Doesn't really care for milk or yogurt and eats cheese when cooked w/ a meal but won't touch string cheese, etc. Fortunately she's a good veggie eater and eats broccoli while it's going out of style.

[buffettbride]

I could be wrong, but are Tylenol Meltaways gluten free? I haven't ever seen them on a gluten-free list. I know the regular chewables are gluten-free but thought the meltaways contained gluten. Does anyone else know?

I had the same concern but did find (on this site I believe) I'll see if I can find it. It seems as though there has been some discussion/concern about those but I'm positive I've read something to help quell that.

My general feeling has been that the Tylenol company is difficult, at best, about disclosing their gluten. Ish.

[buffettbride]

Here are a few links to threads about the gluten-free status regarding Tylenol Meltaways:

June 2006

Open Original Shared Link

March 2007

Open Original Shared Link

[buffettbride]

Doll had some very good answers. I am having the same symptoms currently. Is you daughter very thin, with little padding on her legs and bottom. This is me. When I sit for a short period of time of cross my legs, I get the "falling asleep" feeling. It is a nerve problem and in my case some weight gain will help me.

Oddly, she's not super skinny at all. I think we caught the dx before she started having severe weight loss and such (although she is about 45% for height for her age).

Sometimes with DD (the drama queen) I have to ask the question the right way to make sure she's stating her answer the way I need to figure it out. I think for now she's simply crossing her legs or sitting on a chair putting pressure above her knee which could cause circulation issues and the "falling asleep" issues.

She said she feels it mostly in the morning when she wakes up that her legs feel the most tingly.

[Terri-Anne]

My gluten-free son also started to complain of tingling/almost-pain in his feet when he was old enough to describe the feeling. At first I suspected they were falling asleep from his position on the chair. But when the problem persisted, and occurred on and off, regardless of position I assumed it had something to do with diet. I contacted my dietician who advised me that, though it was rare in our society, some people with vitamin B deficiencies experienced this tingling feet sensation. The reason a person on a gluten-free diet would be vitamin deficient, is that they are not ingesting the same "vitamin-enriched" wheat foods that the mainstream diet offers. ie, "enriched" white bread, "enriched" cereals, etc. She suggested I put him on a daily gluten-free multi-vitamin, ensuring it contained the vitamin B that he was missing. I followed her professional advice, and as long as I ensured he took the vitamin daily, his tingly feet stayed away, regardless of accidental glutenings. His severe "cradle-cap" and resulting bald patches also resolved themselves, too!

Please take your daughter's complaint of tingly legs seriously, not as a symptom of her "dramatic-nature." I would recomend you try giving your daughter a gluten-free multi-vitamin to see if this resolves the problem. I'm willing to bet it will!

[buffettbride]

My gluten-free son also started to complain of tingling/almost-pain in his feet when he was old enough to describe the feeling. At first I suspected they were falling asleep from his position on the chair. But when the problem persisted, and occurred on and off, regardless of position I assumed it had something to do with diet. I contacted my dietician who advised me that, though it was rare in our society, some people with vitamin B deficiencies experienced this tingling feet sensation. The reason a person on a gluten-free diet would be vitamin deficient, is that they are not ingesting the same "vitamin-enriched" wheat foods that the mainstream diet offers. ie, "enriched" white bread, "enriched" cereals, etc. She suggested I put him on a daily gluten-free multi-vitamin, ensuring it contained the vitamin B that he was missing. I followed her professional advice, and as long as I ensured he took the vitamin daily, his tingly feet stayed away, regardless of accidental glutenings. His severe "cradle-cap" and resulting bald patches also resolved themselves, too!

Please take your daughter's complaint of tingly legs seriously, not as a symptom of her "dramatic-nature." I would recomend you try giving your daughter a gluten-free multi-vitamin to see if this resolves the problem. I'm willing to bet it will!

Wow. That sounds exactly like what she feels. It's definitely in the feet/ankles/calves area. I have the Gummy Vites but I'll be more religious about making sure she gets it every day. She loves taking them every day, I just forget. Perhaps I'll pack one in her lunchbox (hooray for laptop lunches) so that way I know she's getting it.

With her it's hard to weed-out the drama vs. real symptoms. Like taking her to the dr. yesterday for some barely-there cold symptoms for an ear/throat check and spending $25 to hear "it's viral." Of course, had I not taken her, she'd have full on strep by Friday or something. Ohhh Murphy's Law.

I think that's why her daily tummy aches were sometimes swept aside as drama. Fortunately, the diagnosis probably couldn't have been made much earlier because there just wasn't enough "damage" says the GI who did her endoscopy.

[Alex Vale]

Hi All,

I am SO happy to finally find some others with Celiac that have tingling in their feet/legs. My 3 year old daughter was just diagnosed last week, and one of her main symptoms was tingling feet (she would tell me that she felt "needles and knots" on her feet, or that they were "falling asleep"). She has been mostly gluten-free for a week, but this morning she woke up limping! She said there was some pain in her calf (yes, she is very verbal). I am totally panicking because I'm worried about nerve damage. Some of you are saying that it could just be a symptom of ingesting gluten, but does anyone know if it could be permanent nerve damage? I have been noticing that no one (even doctors) really knows!

I'm stumped. I don't want to traumatize her anymore with all the blood drawings and tests, etc. Should I take her to a neurologist? Would they be able to tell anything?? I have had such problems with Doctors leaving me with no answers (I diagnosed her myself, and then all the blood tests and endoscopy proved 100%). I realize that this is a newer epidemic in our country, but I hate sitting here without any solid answers.

If anyone has info or advice, I am ALL ears!

Thank you, thank you, thank you!

Alex

[AliB]

A also would add my voice to the low nutrient level 'camp'. If your DD is not getting a balanced quota of nutrients then things like tingly legs/'growing pains' will manifest (contrary to popular opinion, 'growing pains' are not normal - they are indicative of a deficiency).

Certainly B complex in a multivit if you can find a decent one that is not full of gluten or sugar! (why, oh why do these manufacturers think that the only vitamins children need is A, D & E (money for old rope!) ????? If we adults need a balance of many vitamins and minerals, don't growing children need them even more than we do????)

Another thing that was mentioned is hypothyroidism. I noticed, about a week or so after I dropped gluten, that my hands kept going numb and I kept getting tingling/prickling in my legs. I had my blood tested for B12/folate deficiency but that came back ok. Hypothyroidism can cause identical symptoms. I mentioned that to my doctor and she agreed that sometimes even 'sub-clinical' levels can create a problem.

I went out and got some kelp tablets and take a few each day and have not had the problem since. Iodine is present in fish, seafood, seaweed and eggs. If your DD doesn't eat much of these then her levels may well be low.

If you are able, one possibility in order to check would be to see if you can find a practitioner of some kind who would be able to get a full check of her nutrient levels done so that you can see where any deficiencies lay. Bear in mind that the levels that are considered to be 'normal' may not necessarily be accurate as a proportion of those who have been used as controls in order to measure those levels, may actually be deficient themselves - it is in no way an exact science!!! Any level that is even just on the low side of normal may need to be addressed.

Unfortunately doctors don't look for deficiencies until they get so bad they manifest as diseases.

[crittermom]

Katharine complains of leg pains when she gets glutened as well. However if you are sure she has not been glutened...I don't have Celiac however, I actually get tingling numb toes and I spoke to my chiropractor about it today. He said that SOMETIMES the muscle that goes around your sciatic nerve can get very tight from sitting, standing, or even sleeping certain ways. He said the following: lay on your back, put both feet on the floor with knees bent. Take the ankle of the "tingly" foot or leg on the opposite knee. Pull the knee and thigh that is up on the opposite knee up to your chest at an angle, not straight back, so it stretches your outer hip and upper outer thigh and buttock. He said this stretch will help to release the muscle and help to get rid of the numbness. Maybe give this a try and see if it helps. If nothing else the stretch feels good!

I hope she is feeling better soon.