Beyond Frustrated

[renee711]

Hi! This is my 1st posting. Thank you for taking the time to read it. The reason why I put up this post is because I am so frustrated and wanted to know if anyone else has experienced these symptoms . I do not know if they are related to Celiac or not. Apparently Neither do the doctors!!

I have had celiac disease for 6 years now. I follow the diet to a T. In May of 2008, I was at work and all of a sudden my hand started shaking (tremor) and I was slurring my speech. My general practitioner thought I was having a stroke. I was hospitalized and had every test from MRI to Spinal Taps and a ton of blood tests. THE DOCTORS FOUND NOTHING! I had to stop working because of my speech problem. I could not be understood when it got to a certain point.

Now this is November, my symptoms have become much more pronounced and different ones have appeared. My speech problem, has been diagnosed as Laryngopharyngeal Reflux , which is causing my vocal cords to swell to the point where they are unable to vibrate. I was put on Zegrid, 2 months ago.. still not helping. The new symptoms have appeared over the last 4 months. I have severe muscle spasms in both my neck and my back. The pain is so bad that I can't sleep. When I am full blown, my hand is shaking, my speech is inaudible, my head starts to bob and my back and neck are in spasms so bad that I am in excruciating pain. 3 Nuerologists and still THE DOCTORS CAN NOT FIND ANYTHING.

Sorry that this is such a bla bla post. I do appreciate all of you that have taken the time to read this. If any of you have any suggestions or similiar problems, I would be grateful for any responses. Thank you!!!

[ShayFL]

Renee,

I wish I could offer you something other than I am praying for you and hope you recover soon. Neurological issues ARE frustrating as that is what I have dealt with myself for the past 12 years. Like you, I had oodles of tests. The gluten-free diet HAS helped me in this area.

Just double check your toiletries and food items (manufacturers do change formulations periodically) to make certain it is not CC. And are you eating dairy? Some have had neuro issues with dairy as well. I know it is but a crumb.....

I really hope you find an answer soon.

Shay

[renee711]

Shay,

Thank you for responding. How have you dealt with neurological problems for 12 years? Did they find out what is wrong with you? I am just tired of all this and wish I could get back to feeling like myself. Thanks for the prayers and I hope you are doing well.

Renee

[ShayFL]

My symptoms waxed and waned and I learned coping mechanisms. I did go to physical therapy for the vertigo where they taught me exercises to teach my brain to compensate. I also took up kickboxing and the like to regain my balanced. A lot of falls on my bum, but over time, I did get better. So much so that I could teach kickboxing. It was a hard journey though. I still have it some, but it is mild since gluten-free. Just a bit of disequilibrium that is constant. For the neuropathy in my hands, I sometimes wear gloves. I find an alternate sensation can help me not think about it. Or I paint which takes my mind off of EVERYTHING else in the world. Just me the canvas and he paint. IT is very freeing. The migraines were awful and I would get them at least 2 times a month and was out for a good 2 - 3 days each time. I just iced my head periodically, stayed home and did what I could around the house until it passed.

Have they tested you for nutritional deficiencies? Calcium, Magnesium, Iron/Ferritin and B12????

A lack of B12 CAN cause all of the symptoms you are describing.

[frec]

I've been on the diet for six years and I have chronic problems with reflux damaging my vocal cords. Are you taking any antacid or proton pump inhibitors--Prilosec, Prevacid, Protonix, anything like that? I won't take them anymore though I did for years. They help with reducing stomach acid but the lack of acid keeps you from digesting as well, especially calcium and magnesium. And they are crucial to normal muscle function. I've had muscle and joint pain for years--fortunately I can still work. I found recently I was low on calcium, magnesium, and B12 despite my gluten free diet. I've been taking calcium and magnesium, sublingual B12, and a weekly magnesium/B complex shot and I think it is helping.

Have you tried acupuncture? How about a naturopath?

I am so sorry; I hope you find out what is going on.

[rumbles]

Renee,

Not as extensive, but I've had many of the issues that you have. For me, the hand tremors, speech problems and muscle spasms are under control with (gluten free) sublingual B-12 two to three times daily. I've been on the B-12 for a couple of years, - the symptoms don't return now unless I forget to take the B-12 for a couple of days. For me, taking B-12 also stops middle of the night leg cramps most of the time (sometimes magnesium, calcium and/or potassium is also needed to stop the leg cramps, but usually it's B-12).

The laryngopharyngeal reflux (LPR) took a bit longer to figure out and get under control. My husband and I both suffered with this for quite a few years. In addition to taking two to four purple pills a day, plus Gavison, it got to the point where I couldn't control it, and was absolutely miserable. Doctors weren't able to help much, so I turned to the Internet, and found some really interesting information. As you referenced, taking antacids and acid blockers caused an imbalance in the stomach, further complicating the real issue, which is actually low stomach acid. As we get older, we produce less and less acid, which eventually causes the churning, splashing and discomfort.

Doctors had given my husband and me prescriptions for multiple drugs to control the "excess" acid, but none of them actually tested me to find out if the problem was really excess acid. I found a simple home test on the Internet, which I took the next morning: before eating or drinking anything except water, I mixed a quarter teaspoon of baking soda in eight ounces of cold water, and drank it. According to the directions, I timed how long it took to belch (not the little ones that noone else notices, - the true belch) for five minutes after drinking the solution (anything after five minutes doesn't count), - I didn't belch at all. According to the article, if you don't belch within two to three minutes, your stomach isn't producing enough hydrochloric acid (early and repeated belching could indicate excessive acid). That morning I picked up gluten free 10 grain Betaine HCL (NOW brand), taking one every time I ate protein, which after a few days stopped the reflux problems, but apparently was too strong, as it also caused "the runs," so we switched to 250 mg Betaine HCL with Pepsin (Solaray brand), which we've been on ever since. Our reflux, acid indigestion, rapid heatbeat at night, hoarseness problems haven't returned (plus most of our allergy problems have cleared up, which I'll briefly explain below), - it's been about six months so far.

The condition is known as hypochlorhydria, and it's also known to cause malabsorption problems, particularly with vitamin B-12 and iron, along with bacterial and Candida overgrowth, gas & bloating, allergies (fascinating, - because protein enters the intestines undigested, it causes a release of histadine/histamine, which creates the food allergy cycle - often sinus allergies) which don't usually appear until many hours later) and an increased risk of stomach cancerIf you want to learn more about this, search dr debe + stomachacidtest, and hypochlorhydria on the Internet.

Hope this helps!

[renee711]

  ShayFL said:

My symptoms waxed and waned and I learned coping mechanisms. I did go to physical therapy for the vertigo where they taught me exercises to teach my brain to compensate. I also took up kickboxing and the like to regain my balanced. A lot of falls on my bum, but over time, I did get better. So much so that I could teach kickboxing. It was a hard journey though. I still have it some, but it is mild since gluten-free. Just a bit of disequilibrium that is constant. For the neuropathy in my hands, I sometimes wear gloves. I find an alternate sensation can help me not think about it. Or I paint which takes my mind off of EVERYTHING else in the world. Just me the canvas and he paint. IT is very freeing. The migraines were awful and I would get them at least 2 times a month and was out for a good 2 - 3 days each time. I just iced my head periodically, stayed home and did what I could around the house until it passed.

Have they tested you for nutritional deficiencies? Calcium, Magnesium, Iron/Ferritin and B12????

A lack of B12 CAN cause all of the symptoms you are describing.

[renee711]

Shay,

Hi! Gracie is cute. Thank you for you information. I did just go to a Celiac doctor and she ran all the tests for vitamin deficiencies. I have started physical therapy and it does seem to be helping. I will have to try and wear the gloves to see if that helps my hands. Kick boxing is out of the question right now due to my condition but good for you! I hope that this post finds you feeling well. Renee

[renee711]

  frec said:

I've been on the diet for six years and I have chronic problems with reflux damaging my vocal cords. Are you taking any antacid or proton pump inhibitors--Prilosec, Prevacid, Protonix, anything like that? I won't take them anymore though I did for years. They help with reducing stomach acid but the lack of acid keeps you from digesting as well, especially calcium and magnesium. And they are crucial to normal muscle function. I've had muscle and joint pain for years--fortunately I can still work. I found recently I was low on calcium, magnesium, and B12 despite my gluten free diet. I've been taking calcium and magnesium, sublingual B12, and a weekly magnesium/B complex shot and I think it is helping.

Have you tried acupuncture? How about a naturopath?

I am so sorry; I hope you find out what is going on.

[renee711]

Frec,

Hi! Thanks for responding. I am glad to hear that someone else has had a problem with vocal cord issues, sorry you do but it made me feel better to know I am not alone. The doctor put me on Zegrid to help reduce the swelling of my vocal cords. It hasn't worked yet. I just got tested to see if I am lacking any vitamins. What is a naturopath? Also how did you find out that you were low on calcium, was that from a vitamin blood test? Thanks again for you advice and support. Renee

[renee711]

  rumbles said:

Renee,

Not as extensive, but I've had many of the issues that you have. For me, the hand tremors, speech problems and muscle spasms are under control with (gluten free) sublingual B-12 two to three times daily. I've been on the B-12 for a couple of years, - the symptoms don't return now unless I forget to take the B-12 for a couple of days. For me, taking B-12 also stops middle of the night leg cramps most of the time (sometimes magnesium, calcium and/or potassium is also needed to stop the leg cramps, but usually it's B-12).

The laryngopharyngeal reflux (LPR) took a bit longer to figure out and get under control. My husband and I both suffered with this for quite a few years. In addition to taking two to four purple pills a day, plus Gavison, it got to the point where I couldn't control it, and was absolutely miserable. Doctors weren't able to help much, so I turned to the Internet, and found some really interesting information. As you referenced, taking antacids and acid blockers caused an imbalance in the stomach, further complicating the real issue, which is actually low stomach acid. As we get older, we produce less and less acid, which eventually causes the churning, splashing and discomfort.

Doctors had given my husband and me prescriptions for multiple drugs to control the "excess" acid, but none of them actually tested me to find out if the problem was really excess acid. I found a simple home test on the Internet, which I took the next morning: before eating or drinking anything except water, I mixed a quarter teaspoon of baking soda in eight ounces of cold water, and drank it. According to the directions, I timed how long it took to belch (not the little ones that noone else notices, - the true belch) for five minutes after drinking the solution (anything after five minutes doesn't count), - I didn't belch at all. According to the article, if you don't belch within two to three minutes, your stomach isn't producing enough hydrochloric acid (early and repeated belching could indicate excessive acid). That morning I picked up gluten free 10 grain Betaine HCL (NOW brand), taking one every time I ate protein, which after a few days stopped the reflux problems, but apparently was too strong, as it also caused "the runs," so we switched to 250 mg Betaine HCL with Pepsin (Solaray brand), which we've been on ever since. Our reflux, acid indigestion, rapid heatbeat at night, hoarseness problems haven't returned (plus most of our allergy problems have cleared up, which I'll briefly explain below), - it's been about six months so far.

The condition is known as hypochlorhydria, and it's also known to cause malabsorption problems, particularly with vitamin B-12 and iron, along with bacterial and Candida overgrowth, gas & bloating, allergies (fascinating, - because protein enters the intestines undigested, it causes a release of histadine/histamine, which creates the food allergy cycle - often sinus allergies) which don't usually appear until many hours later) and an increased risk of stomach cancerIf you want to learn more about this, search dr debe + stomachacidtest, and hypochlorhydria on the Internet.

Hope this helps!

[renee711]

Rumbles,

Hello! Thank you for writing! I did go see a celiac doctor and she tested me for vitamin deficiencies. I was curious, for the hand tremors you stated that you are taking b12 , how did you figure that out? Is it a vitamin that is over the counter? I asked my celiac doctor but she said that the tremors were not associated with celiac, that none of my symptoms were. Thanks for listening. Hope you are feeling well.

[ShayFL]

You can get B12 at any healthfood store. I like Jarrow 5000 mcg sublinguals. You want to dissolve it under your tongue so it is absorbed directly into he bloodstream. It is non-toxic. You can take mega doses and whatever your body doesnt need gets removed into your urine.

[ang1e0251]

I'm not sure how your dr. knows your tremors are not from celiac. I also have had increased hand tremors that have decreased dramatically since going gluten-free a year ago. They really kick up again if I'm glutened. Of course I don't know about your tremors, but it's hard to discount anything as not being related to Celiac. It seems like the symptoms are far ranging and so different per individual. The great thing about this forum is that you can pose a problem, and you are likely to come up with someone who can help!

[renee711]

  ang1e0251 said:

I'm not sure how your dr. knows your tremors are not from celiac. I also have had increased hand tremors that have decreased dramatically since going gluten-free a year ago. They really kick up again if I'm glutened. Of course I don't know about your tremors, but it's hard to discount anything as not being related to Celiac. It seems like the symptoms are far ranging and so different per individual. The great thing about this forum is that you can pose a problem, and you are likely to come up with someone who can help!

[renee711]

Dear ang1e0251,

Hello! I appreciate you comment. I have been thinking the same thing. When I went to the celiac dr. , she said that she had never known of anyone having tremors from celiac disease, but as we all have seen by people's postings..it seems common. Also my other symptoms of muscle aches, spasms and the reflux disorder ( which is causing my speech problems), I have read on this site that others have had the same problems! This doctor is a specialist in NYC and I am bothered that she said that none of these symptoms are related to celiac.

[renee711]

To all my friends who have been kind enough to respond,

I do want to thank you and all of my new friends on this website for making me feel sane! The doctor's certainly aren't helping, but just being able to vent and have people actually listen and respond, means the world to me. I am trying so hard to deal with all that is going on and having all of you take the time to show you care, I can not thank you all enough! THANK YOU! THANK YOU! THANK YOU! Renee

[Lizz7711]

Chronic mercury poisoning from amalgam fillings is being found to be an underlying factor for alot of neurological issues (among other issues)...so i'd defintely look into that if you haven't already. The website iaomt dot org has alot of good scientific information on mercury issues and how to safely remove them. Mercury should not be in our heads inches away from our brains, and all day long mercury vapor is being released and we breathe it in if we have fillings.

hope you get well soon,

Liz

  renee711 said:

To all my friends who have been kind enough to respond,

I do want to thank you and all of my new friends on this website for making me feel sane! The doctor's certainly aren't helping, but just being able to vent and have people actually listen and respond, means the world to me. I am trying so hard to deal with all that is going on and having all of you take the time to show you care, I can not thank you all enough! THANK YOU! THANK YOU! THANK YOU! Renee

[ptkds]

Did they do an MRI w/Contrast? Some things show up with contrast and can't be seen without contrast.

Have they checked you for MS? Lyme Disease? You need to keep getting tested and don't give up. Don't let them tell you it is all in your head or that you are fine. Something is wrong, and the answer is out there somewhere.

[spunky]

I don't know what could be wrong, but I'm just throwing this idea out there for whatever it's worth.

I used to host a monthly radio show and one time we had Cori Brackett as our guest... in a nutshell, becuase of her own struggles to try to overcome MS, she'd done a huge investigation and made a documentary film on how artificial sweeteners, especially aspartame, affect some people...

...so... I don't know if you drink diet pop or use any aspartame products, or even if that could be the cause, but I'm just saying it could possibly be something to investigate if you do use those types of diet products. In Cori's documentary, a lot of people had vast improvement in weird, unexplainable symptoms very shortly after removing aspartame from their diets.

Whatever is going on, I hope you or your doctor are able to identify the cause and get it resolved very soon! Hang in there!

[renee711]

  Lizz7711 said:

Chronic mercury poisoning from amalgam fillings is being found to be an underlying factor for alot of neurological issues (among other issues)...so i'd defintely look into that if you haven't already. The website iaomt dot org has alot of good scientific information on mercury issues and how to safely remove them. Mercury should not be in our heads inches away from our brains, and all day long mercury vapor is being released and we breathe it in if we have fillings.

hope you get well soon,

Liz

[renee711]

  Lizz7711 said:

Chronic mercury poisoning from amalgam fillings is being found to be an underlying factor for alot of neurological issues (among other issues)...so i'd defintely look into that if you haven't already. The website iaomt dot org has alot of good scientific information on mercury issues and how to safely remove them. Mercury should not be in our heads inches away from our brains, and all day long mercury vapor is being released and we breathe it in if we have fillings.

hope you get well soon,

Liz

[renee711]

Hi Liz,

Thanks for the idea, but the one area I never had problems with is my teeth! I say with pride, that I have never had a cavity...perfect teeth lol

[renee711]

  ptkds said:

Did they do an MRI w/Contrast? Some things show up with contrast and can't be seen without contrast.

Have they checked you for MS? Lyme Disease? You need to keep getting tested and don't give up. Don't let them tell you it is all in your head or that you are fine. Something is wrong, and the answer is out there somewhere.

[renee711]

ptks,

The doctors did do mri's w/wo contrasts back when this started. I have to check if they can do it again. They did check me for ms and lymes disease. My legs have started to give out on me and feel very spongy..hard to explain. When it happens, I need assistance walking. Doing my own research it sounds like ms, but the dr. said it's not.

Thank you for telling me not to give up and that it is not in my head! I am trying very hard to stay positive.

Renee