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Old And New Symptoms

bellis

By bellis
in Coping with Celiac Disease

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bellis Rookie
bellis
Posted

I went gluten free 7 months ago, and symptoms went away almost immediately. Lactose free for a while but have been slowly bringing it back. In the past, i have felt dizzy from time to time, but lately almost dailly. Fingers and toes have begun tingling and numbness in toes for the past 3 weeks. left calf and knee are sore alot. went and had blood work done B-12 was normal, Iron was high, hemoglobin count was high. ANA positive,Range negative? at blood test, Speckled titer 1:40( WHatever all of this means ). Have been taking b-12 supplements and Multi's (without iron) all along. Never officially diagnosed other than elimination diet confirmation.

Am i still getting gluten somehow? i have had eggs at resturaunts here and there over the last month. Can and does gluten cause tingling and numbness even without a b-12 deficiency?

I'm nervous and frustrated. I may need a new doctor who gets it. they told me to come back next month, for more blood work and office visits. I could sure use some guidance, thanks...

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katifer Apprentice
katifer
Posted

I went gluten free 7 months ago, and symptoms went away almost immediately. Lactose free for a while but have been slowly bringing it back. In the past, i have felt dizzy from time to time, but lately almost dailly. Fingers and toes have begun tingling and numbness in toes for the past 3 weeks. left calf and knee are sore alot. went and had blood work done B-12 was normal, Iron was high, hemoglobin count was high. ANA positive,Range negative? at blood test, Speckled titer 1:40( WHatever all of this means ). Have been taking b-12 supplements and Multi's (without iron) all along. Never officially diagnosed other than elimination diet confirmation.

Am i still getting gluten somehow? i have had eggs at resturaunts here and there over the last month. Can and does gluten cause tingling and numbness even without a b-12 deficiency?

I'm nervous and frustrated. I may need a new doctor who gets it. they told me to come back next month, for more blood work and office visits. I could sure use some guidance, thanks...

katifer Apprentice
katifer
Posted

hmm not sure why it didnt post what i wrote--but i had the same thing dizziness often/daily tingling down my arms and legs, numbness--in short my nutrtionist said that my blood sugar was a mess and i needed to stay off all sugar cane/evaporated cane syrup whatever they like to call it:)----it helped tremendously. He had me take chromium( it isnt expensive at all) and that has leveled my blood sugar --i also do not have gluten/ or dairy---hope you feel better soon you are not alone:)

katifer Apprentice
katifer
Posted

hmm not sure why it didnt post what i wrote--but i had the same thing dizziness often/daily tingling down my arms and legs, numbness--in short my nutrtionist said that my blood sugar was a mess and i needed to stay off all sugar cane/evaporated cane syrup whatever they like to call it:)----it helped tremendously. He had me take chromium( it isnt expensive at all) and that has leveled my blood sugar --i also do not have gluten/ or dairy---hope you feel better soon you are not alone:)

P.s. He said it was Reactive Hypoglycemia...every doctor acted like it wasnt a big deal but it helped me so much to keep sugar out.

cleanfreak73 Newbie
cleanfreak73
Posted

Some people get that feeling when their thyroid is out of whack too. Like carpal tunnel and the like.

Mack the Knife Explorer
Mack the Knife
Posted

My fingers and toes go numb when I accidentally eat gluten... but only on the left hand side of my body. It's kind of weird.

gf-soph Apprentice
gf-soph
Posted

I went gluten free 7 months ago, and symptoms went away almost immediately. Lactose free for a while but have been slowly bringing it back. In the past, i have felt dizzy from time to time, but lately almost dailly. Fingers and toes have begun tingling and numbness in toes for the past 3 weeks. left calf and knee are sore alot. went and had blood work done B-12 was normal, Iron was high, hemoglobin count was high. ANA positive,Range negative? at blood test, Speckled titer 1:40( WHatever all of this means ). Have been taking b-12 supplements and Multi's (without iron) all along. Never officially diagnosed other than elimination diet confirmation.

Am i still getting gluten somehow? i have had eggs at resturaunts here and there over the last month. Can and does gluten cause tingling and numbness even without a b-12 deficiency?

I'm nervous and frustrated. I may need a new doctor who gets it. they told me to come back next month, for more blood work and office visits. I could sure use some guidance, thanks...

I've had similar problems at times. For me the worst time was due to low B12. You say it is normal, do you know the exact amount the the reference range? These ranges are often totally inadequate, e.g. in Australia the miniumum is 145, in some countries it's several hundred points higher. From 18 months of yo-yoing B12 I know I feel unwell if I am below 300 (but to be clear the tingling was only when it was below 130 or so)

Blood sugar is a good suggestion, get them to order a glucose tolerance test. They take your blood glucose and insulin levels, then make you drink a bunch of a glucose drink, then recheck your blood glucose and insulin at 1 and 2 hours after.

It could also be a food allergy, I've had lip tingling etc from this, but yours sounds pretty widespread and consistent, so it sounds less likely. Could still be worth keeping food diary to see if you can spot a pattern. Have you introduced or incrased any foods around the time the tingling started?

Final thought, have you even seen a chiropracter? Trapped nerves can cause tingling and weakness depending on where the spine is out of line. I have had carpel tunnel-like sensations in my wrists and hands a couple of times over the last 6 months, each time they have been much better after a chiropractic adjustment, and generally gone after a few. I see someone who is very gentle, never cracks my neck etc.

Good luck, and hope you get to the bottom of it.

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  • 10 months later...
kcmaru Newbie
kcmaru
Posted

OMG!!I am crying as I read your posts. I finally know I'm not crazy. I had been having horrible abdomininal pain, bloating, headache and chest pain in Dec and was hospitalized on Dec 23. They released me after a chest xray, a CT scan of my chest and abdomin but could find nothing wrong.Before I left that day, my nurse told me, on a hunch, to stop all starch of all kinds and see how I felt. I immediately cut it all out of my diet, including rice, potato and corn as well. Within 3-5 days, with no medicine, I was completely symptom free. I stayed gluten-free until a week ago when I was scheduled to have a blood test to check for Celiac. I was told that I should add some gluten back into my diet or the blood test would come up negative. So I did. I felt ok for two or three days. I had my test and it was negative. I figured since it was negative, I had no gluten problem so I added it ALL back in. Within three days of doing this I started having pain and numbness in my left calf, my fingers, toes and parts of my left leg have been numb, I have a dull pain in my chest and in my back and my hip joints are killing me. The numbness is on both sides of my body but the left is much worse. I have been to my primary care doctor 3 times this week. I had a chest xray, spinal xrays, blood work, echocardiogram and ALL have been normal. My doctor and I thought I was cracking up. Finally, today we were talking about other reasons I could be feeling this way. I mentioned I have a lot of stress and I have gone back to eating gluten. I had NO IDEA this could be a reaction to gluten. He snapped his fingers and said "I bet that's what this is". He told me the blood tests can be negative and you can still have Celiac. He's having me go back off of gluten and see how I feel. I'll post and let you know in a few days. Thank you so much for posting your symptoms!!!

mushroom Proficient
mushroom
Posted

Welcome kcmaru.

If you had not been eating gluten since December, your celiac tests would almost certainly be negative, because you need to be eating a full gluten diet right up until the time of testing. You definitely sound like you have major gluten intolerance, with both gastrointestinal and neurological symptoms. Adding gluten back in for two or three days would make no difference - you need to be on gluten for at least two months to get an accurate test result.

That was one smart nurse - smarter than the doctors :P Good luck with your gluten free life. :)

Edited by Mushroom to change "use" to "nurse" :D and "our" to "your" :lol:

Korwyn Explorer
Korwyn
Posted

OMG!!I am crying as I read your posts. I finally know I'm not crazy. I had been having horrible abdomininal pain, bloating, headache and chest pain in Dec and was hospitalized on Dec 23......

Welcome kcmaru! I'm so glad you found out you aren't crazy! I had my first 'think I'm having a heart attack' 20 years ago. They told me it was stress. Then too much caffine. One time I was told, "You just need to get more excercise." I was in my martial arts classes 14 to 16 hours a week!

I too (as so many others have) had CT scans, x-rays, nuclear stress tests, drugs, pains in my abdomen, pains in my neck, numbness, tingling, muscle spasms, myoclonus, panic attacks, depression, insomnia, etc, etc, etc. My Doctor told me not long before I went gluten-free that she didn't know what to test for any more so she was going to send me to some specialists. I think she was starting to think I was a severe hypochondriac.

All these things turned to be food related (not just gluten) for me!

I'm so glad to know you know you aren't crazy!

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