Muscle Weakjness / Twitching / Neurological Symptoms?

[cbur53]

I've been told, "If it twitches, it needs Magnesium". I use a lot of it, as well as what others have recommended. I was really low in Vitamin D. I've not been tested for other deficiencies, but I know I need a lot of supplements, like potassium and salt. Does anyone know what a normal therapeutic dose of potassium is? I often take at least 500mg. a day, especially if I've had a lot of heart skips and/or wake up shaking like I'm shivering badly but I'm not cold.

[bny06]

I'm having so many of these symptoms as well- my hands and wrists feel so weak! It's hard to type as fast as I usually do.. and i feel like the symptoms have gotten a little worse since going gluten free as well (3 weeks) anyone else get worse symptoms when they went gluten free at first, if so how much longer did the worsen (the thought of this getting a lot worse scares me - i need good dexterity for my job and kids), and when did it finally start turning around and improving? Thanks!

[Marilyn R]

There was a great article in "Living Without" (August/Sept 2011). Dr. Allessio Fasano (expert on celiac disease) stated that 25% of people with celiac disease have secondary hyperparathyroidism, which is in part part of why so many Celiacs get Osteoporosis.)

I was diagnosed with Primary Hyperparathyroidism before I went gluten-free. A number of those symptoms (fatigue, twitches, tingling, neuropatathy) can be attributed to Hyperparathyroidism. But I had other neuro issues too...

You might want to request a simple blood test at your next doctor visit. Have them check your calcium and PTH levels. And if you haven't had one already, see if your insurance will cover a bone scan.

I'm absolutely convinced I would not have had to have the surgery if just one of my doctors had done a celiac disease screen on me.

By the way, the article strongly suggests that people with celiac disease NOT go on drugs commonly prescribed for osteoporosis/osteopenia. They're to stick with the diet and use supplements.

[AVR1962]

There was a great article in "Living Without" (August/Sept 2011). Dr. Allessio Fasano (expert on celiac disease) stated that 25% of people with celiac disease have secondary hyperparathyroidism, which is in part part of why so many Celiacs get Osteoporosis.)

I was diagnosed with Primary Hyperparathyroidism before I went gluten-free. A number of those symptoms (fatigue, twitches, tingling, neuropatathy) can be attributed to Hyperparathyroidism. But I had other neuro issues too...

You might want to request a simple blood test at your next doctor visit. Have them check your calcium and PTH levels. And if you haven't had one already, see if your insurance will cover a bone scan.

I'm absolutely convinced I would not have had to have the surgery if just one of my doctors had done a celiac disease screen on me.

By the way, the article strongly suggests that people with celiac disease NOT go on drugs commonly prescribed for osteoporosis/osteopenia. They're to stick with the diet and use supplements.

Marilyn, my doc also thought originally that I had hyperparathyroidism, my calcium levels were at 10.9, PTH 23 and I was a mess. I was tested for EVERYTHING, went thru all the endo testing (I have stones).....bone loss was found, etc. In the meantime I went on a gluten-free diet which was suggested by a family member. It took a little while but my calcium levels went from hyper to almost hypo at 9.0! That is absolutely amazing!! PTH still in normal range. Did they take a parathyroid out or did they go in and see nothing? Are you improving?

[AVR1962]

Yes, Celiac could explain the symptoms. The issues Celiacs have are due to a lack of absorbtion by the villa in the intestines. Most of us end up with vitamin and mineral deficeincies which cause our symptoms, primarily B12, magnesium, calcium, and vit D. I too really thought my MRI was going to come back and docs were going to say I had MS, I was fully prepared but as the picture was put together I was diagnosed with Celiac. What I can tell you too is that a persistant diet will pay off. I have had to do alot of supplementing and at this point I am 5 months t=into a gluten-free diet and finally feeling myself.

[Marilyn R]

Marilyn, my doc also thought originally that I had hyperparathyroidism, my calcium levels were at 10.9, PTH 23 and I was a mess. I was tested for EVERYTHING, went thru all the endo testing (I have stones).....bone loss was found, etc. In the meantime I went on a gluten-free diet which was suggested by a family member. It took a little while but my calcium levels went from hyper to almost hypo at 9.0! That is absolutely amazing!! PTH still in normal range. Did they take a parathyroid out or did they go in and see nothing? Are you improving?

My surgeon from an esteemed college clinic removed 3.5 of my parathyroid glands. I had to have a nuclear scan of my neck before the surgery. I asked the surgeon to forego that, but he wouldn't.

When I didn't have significant relief from the surgery, the endocrinoligist from the same esteemed clinic kept telling me that maybe it would take some time. I kept getting progressively worse.

You should thank the bejesus out of the family member who suggested gluten-free.

BTW, I did send a letter to the endocrinoligist about screening for celiac disease and tried to be civil (didn't talk about living hell or anything).

I am improving, thanks for asking. I'm actually doing pretty good!

(Wish I had my other 3.5 parathyroid glands though, darn it.)

[AVR1962]

My surgeon from an esteemed college clinic removed 3.5 of my parathyroid glands. I had to have a nuclear scan of my neck before the surgery. I asked the surgeon to forego that, but he wouldn't.

When I didn't have significant relief from the surgery, the endocrinoligist from the same esteemed clinic kept telling me that maybe it would take some time. I kept getting progressively worse.

You should thank the bejesus out of the family member who suggested gluten-free.

BTW, I did send a letter to the endocrinoligist about screening for celiac disease and tried to be civil (didn't talk about living hell or anything).

I am improving, thanks for asking. I'm actually doing pretty good!

(Wish I had my other 3.5 parathyroid glands though, darn it.)

I am sorry you had to go thru all that. When my doc thought parathyroidism my thought was 'finally a relief' but I was very confused when that it all of a suddent could not be especially reading all the literature on James Norma's site. Way back in those mega pages on his site he talks about this very thing with Celiac and in there says that calcium can go high but that is due to the parathyroid being enlarged to try to safe itself and starts producing more calcium. However, put on a gluten-free diet these patients improve and their calcium levels go back into normal range. I can send you the link if you are interested. I am also in a group on FaceBook for parathyroidism and there is a huge debate going on there right now on this very subject. If you are interested I can send you the link top that as well.

[Marilyn R]

Wow. I thought I had read everything on Dr. Norman's site before I had the surgery. It's so bizzare that it never dawned on me until I got uncontrollable diahhreah and daily nausea about six months after the surgery that it could be gluten. Maybe because of the brain fog? IDK.

My mom had celiac disease. My sister found in her diary that Mom had a calcium level of over 12 and her doctor told her they'd hold off on doing anything until she got up to 14. (Mom was on and off compliant with the diet, mostly off.) My calcium level was 11.3, PTH just over the normal limits.

Please do send the Norman link. I'll hand deliver a copy to all the local surgeons that specialize in HPTH surgery. (My PCP is married to one.)

Question about the FB discussion group. If you post something on the discussion, does it show up when your friends sign on? (I have some issues about FB & privacy.) If activity on the forum does not show up when friends sign on, I'd be interested in the forum. I don't want to join a discussion group where my posts are viewed by friends when they sign on.

I joined a yahoo hyperparathyroidism group before the surgery. There were other posters (some from the UK) that went to Dr. Norman and said that several months post op, they still felt horrible. Dr. Norman and his staff were unkind to some of them. I posted a suggestion about checking into celiac disease and a moderator removed my post. I questioned the removal and was advised that the forum was strictly limited to topics involving HPTH! I fought back and didn't win. I haven't revisited that forum, but feel guilty about it in a way.

The other strange thing is that I had another high calcium level after eating quinoa. I knew I was having a food reaction and told my gastro that I wanted to delay blood tests for a week. He insisted that I head straight to the lab, and I did as he asked. He called me (himself) and told me he thought I had a failed surgery when he received the blood test results. I asked him if he was telling me he thought I had cancer. "No, I don't think it's cancer." I told him if it wasn't cancer it had to be quinoa, and he said, "Marilyn, food cannot affect blood tests."

I delivered a copy of the "Living Without" article to him this week with a note that I thought he'd be interested. The great thing is that he's a wonderful doctor and I know he'll read it. And he may make his son read it, a new gastro in town. If we can educate people on this wierd disease (or intollerance), some people may have an easier run in this world than we have.

[AVR1962]

Wow. I thought I had read everything on Dr. Norman's site before I had the surgery. It's so bizzare that it never dawned on me until I got uncontrollable diahhreah and daily nausea about six months after the surgery that it could be gluten. Maybe because of the brain fog? IDK.

My mom had celiac disease. My sister found in her diary that Mom had a calcium level of over 12 and her doctor told her they'd hold off on doing anything until she got up to 14. (Mom was on and off compliant with the diet, mostly off.) My calcium level was 11.3, PTH just over the normal limits.

Please do send the Norman link. I'll hand deliver a copy to all the local surgeons that specialize in HPTH surgery. (My PCP is married to one.)

Question about the FB discussion group. If you post something on the discussion, does it show up when your friends sign on? (I have some issues about FB & privacy.) If activity on the forum does not show up when friends sign on, I'd be interested in the forum. I don't want to join a discussion group where my posts are viewed by friends when they sign on.

I joined a yahoo hyperparathyroidism group before the surgery. There were other posters (some from the UK) that went to Dr. Norman and said that several months post op, they still felt horrible. Dr. Norman and his staff were unkind to some of them. I posted a suggestion about checking into celiac disease and a moderator removed my post. I questioned the removal and was advised that the forum was strictly limited to topics involving HPTH! I fought back and didn't win. I haven't revisited that forum, but feel guilty about it in a way.

The other strange thing is that I had another high calcium level after eating quinoa. I knew I was having a food reaction and told my gastro that I wanted to delay blood tests for a week. He insisted that I head straight to the lab, and I did as he asked. He called me (himself) and told me he thought I had a failed surgery when he received the blood test results. I asked him if he was telling me he thought I had cancer. "No, I don't think it's cancer." I told him if it wasn't cancer it had to be quinoa, and he said, "Marilyn, food cannot affect blood tests."

I delivered a copy of the "Living Without" article to him this week with a note that I thought he'd be interested. The great thing is that he's a wonderful doctor and I know he'll read it. And he may make his son read it, a new gastro in town. If we can educate people on this wierd disease (or intollerance), some people may have an easier run in this world than we have.

It is so good to find someone who has been dealing with the same issues. Yes, you can join the group and your posts will not go out to your friends' pages. It will show on your page that you visited so if you do not want that to be seen just delete it from your page, that's what I do. There are several in that group whose docs have said their situation my be celiac instead but of course that gets real confusing to think it's one thing and then told it might not be that at all. I read some testimony from some of those who had surgery with Dr. Norman that did not improve the patients symptoms, one that even said that she had a scan which doc claimed had a growth and then at surgery nothing was found, nothing removed and she still had to pay for the surgery. How frustrating! Here is the link to the FaceBook group. I really feel there are some in the group that could benefit from your personal history on this subject. Open Original Shared Link

Here is the link to Dr Norman's page on Celiac, scroll down til you get to the celiac part: Open Original Shared Link

**There is a growing group of patients who have dramatic life-long problems absorbing calcium in their diet. These patients are now illustrated on our graph in the purple area. These patients have a problem with their intestines that prevent them from absorbing calcium well. Since they don't (can't) absorb calcium from their diet, their NORMAL parathyroid glands will do what they are supposed to do... maintain a proper calcium level in the blood. There is only one thing these normal parathyroid glands can do... all four glands enlarge and produce lots of PTH which removes calcium from the bones--its the only place to get the calcium. The blood calcium is therefore maintained appropriately in the normal range (usually low normal between 8.2 and 9.2, but can be as low as 7.0) at the expense of taking calcium out of the bones. Thus these patients have very significant osteoporosis, high PTH levels, low normal calcium and high alkaline-phosphatase (shows increased bone destruction). These patients do NOT need their parathyroid glands removed. They have developed a total-body calcium deficit due to a longstanding inability to absorb calcium through their intestines.**

[Marilyn R]

Likewise, AVR. (And I'm glad you saved your little parathyroid glands). Thank you so much for the links, and info I requested. It's interesting that Dr. Norman never mentions wheat consumption with the Osteopenia or Osteoporosis and malabsorbtion. I really think if I'd seen a reference to wheat, it would have connected with Mom's disease. Dr. Norman has a little gold mine over there in Tampa. People from Saudi Arabia and all over the world go there. (That isn't where I went, but I considered it at length.)

BTW, I had a hematoma from the surgery. In retrospect, I understand why that happened. At the time, the prestigious surgeon was so surprised it happened and apologized all over himself. I haven't sent him a letter yet. I reckon I should.

Again, thanks for the links. Good for you for checking things out before moving forward. How are you doing? Are you getting better? (It takes awhile.)

[cougie23]

I have celiac and had for a while just found out last year My problem is my feet twitch and keep me up, i put a heat pad on feet to help,i try to stay on the diet, is there any relief from that,any thing you can take?

ZANEX...wHILE ITS MOSTLY GIVEN FOR ANXIETY...iT WAS PRESCRIBED TO ME BY AN er DOCTOR WHEN i WAS TAKEN TO THE HOSPITAL AFTER i HAD A SEIZURE. zANEX IS A MILD SEDITIVE AND MUSCLE RELAXER...MY REGULAR dOCTOR NOW PRESCRIBES IT FOR THE MUSCLE SPAZMS...TWITCHES..TICS...AND THE SUDDEN PAINFUL LEG CRAMPS(LATE AT NIGHT OR EARLY MORNING) THAT i GET IN EDITION TO ALL THE other BIZZARE SYMPTOMS THAT SEEM TO BE NEROLOGICLY ASSOCIATED TO CELIACS!!!

Sorry guys ...I'm typing this in the dark....everyones asleep..except me...THANKYOU CELIACS ...and I hit cap lock by mistake!!! I refuse to type this over!!! Anyways Zanex relaxes the muscles enough to stop the spazms and twiches...1/2 during the day...or awhole one if you want to be knocked out and sleep(twichless)...LOL!!!! otherwise 1/2 one at night works just as well especialy if you have kids and need to sleep but still rouse in the middle of the night...if you know what I mean!!!

[AVR1962]

Likewise, AVR. (And I'm glad you saved your little parathyroid glands). Thank you so much for the links, and info I requested. It's interesting that Dr. Norman never mentions wheat consumption with the Osteopenia or Osteoporosis and malabsorbtion. I really think if I'd seen a reference to wheat, it would have connected with Mom's disease. Dr. Norman has a little gold mine over there in Tampa. People from Saudi Arabia and all over the world go there. (That isn't where I went, but I considered it at length.)

BTW, I had a hematoma from the surgery. In retrospect, I understand why that happened. At the time, the prestigious surgeon was so surprised it happened and apologized all over himself. I haven't sent him a letter yet. I reckon I should.

Again, thanks for the links. Good for you for checking things out before moving forward. How are you doing? Are you getting better? (It takes awhile.)

Marilyn, drat a hematoma. I am assuming you are on meds to dissolve it? I have had them, they slowly dissolve. I am doing much much better. 5 months now into my gluten-free diet, supplementing and changes in my diet have made a world of difference for me. I can look back now and see how awfully sick I was and in some ways very frightening. When my calcium went high topped with everything else that was going on I was an absolute train wreck. I just wanted to hide. The high calcium made me very hormonal and doc at the time kept saying it was female issues. All of a sudden, overnight? Did all the tests with GYN and was cleared. It was a long journey, made lots of mistakes but I am so thankful to be where I am today. I even went for a jog yesterday, did an hour walk with my dogs the day before. I remember barely having energy to clean my floors and get myself ready for the day, sleeping 10-12 hours a night and being in just terrible pain.

How about yourself? How long have you been gluten-free? By taking the glands out....how does that now effect how your body regulates calcium to your body? I would assume you'd be on a pretty good dosage of calcium and vit d?

[AVR1962]

I have celiac and had for a while just found out last year My problem is my feet twitch and keep me up, i put a heat pad on feet to help,i try to stay on the diet, is there any relief from that,any thing you can take?

Mandopicker7, more than likely your body is defiecient in magnesium. Look up a list of high magnesium fruits and foods and try to incorporate them into your diet. Suppelemnts help as well. Try to stay as natural as possible, meds can have side-effects. Docs will hand out prescripts in a heart-beat. I stay away from perscription meds as they can polute the liver.

[bny06]

I tried the magnesium the past couple of days and it defintely seems to be helping the muscle spasms! however I still have pretty crazy hand weakness - typing feels like i have lost some of my dexerity and I'm totally freaked out by that! (did yall have anything like that??) did magnesium or the gluten free diet seem to help with those type of sypmtoms too??? I'm almost 4 weeks into gluten free... ugh.. i just wish things happened faster!!! I can't wait to go on a jog again!!!