[Elizabeth Ann]

Hello, I am new to this. To make this as short as possible I had my gall bladder out in Jan 08. Bloating issues, severe nausea, and alot of Multiple Sclerosis symptoms. After numerous tests including MRI's and Lab Test I was put on a Gluten Free Diet first of July. I was wondering if anyone had problems with their central nervous system, including heart palpataions, eye issues, light sensativities, balance prbolems, numbness. I do feel better after starting the diet, but I have these episodes, usually after eleven at night. I ate Gluten free Vinegar and Cucumbers last evening and I had a major attack last night. They scare me so bad. I know some Celiacs cannot tolerate vinegar. I was just wondering if anyone had similar experiences. I am from WV and doctors where I live are not up on the latest on Celiac information. I have had symptoms since June 07, at least. As above I am feeling better, but I need some pointers and input please. I have no confirmed diagnosis, lab test were negative and biopsy negative also. Then after receiving the results the doctor went on to say, "I don't completly trust our lab," and I am thinking I cannot believe this, try to get results from a lab that isn't dependable. I am so frustrated at this time. Please help.

[hollyres]

The anwser to all of your questions are YES! They also thought my symptoms were MS-like. it takes a long time to get all of the gluten out of your system, so be very careful and read, read, read. I also didn't come up positive, but there is no doubt that I have it. I got "glutened" yesterday and had a night terror last night - waking up screaming - gluten is the only thing that does that. When I have gluten, I have trouble balancing and walking. After two years on the diet, I can say that I am so much better, with almost zero symptoms - but when I get even the smallest amount, the symptoms all come right back. Kepp the faith and maybe even a diary of what you eat so that you can see patterns of what is bothering you. Vinegar also makes me feel sick - but not gluten symptoms. Good luck - and don't cross contaminate (CC)! I did that for a year and it held up healing like crazy. I can't even breathe it.

[RiceGuy]

You may be one of many who suffer from nutritional deficiencies. The symptoms you describe can be due to deficiencies in magnesium, B vitamins, and/or various other things. Until the gut heals, some supplements can make a real difference.

[Elizabeth Ann]

hollyres, on Aug 29 2009, 05:54 AM, said:

The anwser to all of your questions are YES! They also thought my symptoms were MS-like. it takes a long time to get all of the gluten out of your system, so be very careful and read, read, read. I also didn't come up positive, but there is no doubt that I have it. I got "glutened" yesterday and had a night terror last night - waking up screaming - gluten is the only thing that does that. When I have gluten, I have trouble balancing and walking. After two years on the diet, I can say that I am so much better, with almost zero symptoms - but when I get even the smallest amount, the symptoms all come right back. Kepp the faith and maybe even a diary of what you eat so that you can see patterns of what is bothering you. Vinegar also makes me feel sick - but not gluten symptoms. Good luck - and don't cross contaminate (CC)! I did that for a year and it held up healing like crazy. I can't even breathe it.

[Elizabeth Ann]

Thanks so much for your imput. I feel like I am losing my mind sometimes. I would love to correspond with you. I have so many questions and no answers. I know every person is different, but I have no on that know alot about the issue.

Thanks again.

[Elizabeth Ann]

RiceGuy, on Aug 29 2009, 08:23 AM, said:

You may be one of many who suffer from nutritional deficiencies. The symptoms you describe can be due to deficiencies in magnesium, B vitamins, and/or various other things. Until the gut heals, some supplements can make a real difference.

Thanks for the heads up on the deficiencies. I need all the info I can get. I appreciate it sooo much. How long does it usually take for the gut to heal? I know everyone is different. I was just curious.

[RiceGuy]

Elizabeth Ann, on Aug 29 2009, 12:37 PM, said:

Thanks for the heads up on the deficiencies. I need all the info I can get. I appreciate it sooo much. How long does it usually take for the gut to heal? I know everyone is different. I was just curious.

You're very welcome.

Many begin to feel markedly better in a few weeks. Some even in just days. For others it takes months, or even years. However, the sooner you give your body what it needs, the better.

Additionally, many on this board have found that it helps a lot to stick with whole, natural foods, and avoid the prepackaged/processed stuff. Buy plain, raw veggies, fruits, whole grains (e.g. brown rice instead of white, etc), and so forth. If you eat meat, buy that plain too. Do watch out for other intolerances and allergies to show up, as it is common, especially once you're gluten-free. Dairy is perhaps the most problematic of these. If you do find dairy to be a problem, there are many alternatives (Rice Dream has gluten).

Reading labels will become second-nature to you. Contact the company before eating any questionable product. The members here are wonderful at pointing out the best products, helping with recipes, and practically anything else you need to know.

[hollyres]

RiceGuy, on Aug 29 2009, 12:57 PM, said:

You're very welcome.

Many begin to feel markedly better in a few weeks. Some even in just days. For others it takes months, or even years. However, the sooner you give your body what it needs, the better.

Additionally, many on this board have found that it helps a lot to stick with whole, natural foods, and avoid the prepackaged/processed stuff. Buy plain, raw veggies, fruits, whole grains (e.g. brown rice instead of white, etc), and so forth. If you eat meat, buy that plain too. Do watch out for other intolerances and allergies to show up, as it is common, especially once you're gluten-free. Dairy is perhaps the most problematic of these. If you do find dairy to be a problem, there are many alternatives (Rice Dream has gluten).

Reading labels will become second-nature to you. Contact the company before eating any questionable product. The members here are wonderful at pointing out the best products, helping with recipes, and practically anything else you need to know.

I pretty much only eat whole foods - I do eat Nutty Rice for breakfast and certified gluten free cookies (Enjoy Life), but other than that it is straight fruits, veggies, meats, and dairy (it doesn't bother me anymore). I got my vit levels tested and they were great, but I think it is because I have been on the diet for a long time and the positive affects have started coming through. My neurological symptoms are directly related to gluten exposure - not vitamins; however, all celiacs should take a supplement. Because I am so clear of it, the slightest amount is very notivalbe, so I am sure when this happens to me (like yesterday - and still trying to figure out the CC issue). It also is an issue with my eyes - they get blured and sometimes I have double vision (happens rarely now - yay). Stay on the list and keep asking questions - people will have good answers. I don't have all of the answers - I only know what works for me - no gluten - ever.

[Elizabeth Ann]

hollyres, on Aug 29 2009, 09:14 AM, said:

I pretty much only eat whole foods - I do eat Nutty Rice for breakfast and certified gluten free cookies (Enjoy Life), but other than that it is straight fruits, veggies, meats, and dairy (it doesn't bother me anymore). I got my vit levels tested and they were great, but I think it is because I have been on the diet for a long time and the positive affects have started coming through. My neurological symptoms are directly related to gluten exposure - not vitamins; however, all celiacs should take a supplement. Because I am so clear of it, the slightest amount is very notivalbe, so I am sure when this happens to me (like yesterday - and still trying to figure out the CC issue). It also is an issue with my eyes - they get blured and sometimes I have double vision (happens rarely now - yay). Stay on the list and keep asking questions - people will have good answers. I don't have all of the answers - I only know what works for me - no gluten - ever.

I also have issues with Dairy and have for a few years. What is a Celiac attack for you? I thought I was having a heart attack and was put in the hosptial last Oct. The doctor at the University Of Virginia also said the anti-depressants was not helping my situation. Every doctor I went to around last Oct that I expressed how nauseated I was,eye problems, muscle spasms, tremors, bladder and bowel issues, numbness, tingling, and finally lost the use of my right leg. Which now has came back, thank goodness. Depression was the only answer I was given. I am thirty-five now and since age sixteen had muscle pain, low grade fever. After seeing numerous doctors I was given the diagnosis of fibromalgia. I have lived with that by heat and taking Celebrex. Now it's like everthing is going South. I am thankful for the progress I have made, but I did not realize, Gluten is everywhere. When you write of cross contamination, can you tell me more? How easy is it to happen? Do you ever eat out? I was a medical receptionist for seven years and I have not work since October. Have you been able to get you life back? I am sorry for so many questions, I am just curious as to your situation.

Thanks again.

[RiceGuy]

Elizabeth Ann, on Aug 29 2009, 02:19 PM, said:

I also have issues with Dairy and have for a few years. What is a Celiac attack for you? I thought I was having a heart attack and was put in the hosptial last Oct. The doctor at the University Of Virginia also said the anti-depressants was not helping my situation. Every doctor I went to around last Oct that I expressed how nauseated I was,eye problems, muscle spasms, tremors, bladder and bowel issues, numbness, tingling, and finally lost the use of my right leg. Which now has came back, thank goodness. Depression was the only answer I was given. I am thirty-five now and since age sixteen had muscle pain, low grade fever. After seeing numerous doctors I was given the diagnosis of fibromalgia. I have lived with that by heat and taking Celebrex. Now it's like everthing is going South. I am thankful for the progress I have made, but I did not realize, Gluten is everywhere. When you write of cross contamination, can you tell me more? How easy is it to happen? Do you ever eat out? I was a medical receptionist for seven years and I have not work since October. Have you been able to get you life back? I am sorry for so many questions, I am just curious as to your situation.

Thanks again.

Some of your symptoms are the same as what I had been experiencing. I lost the use of both legs, and that was actually long after going gluten-free. What I didn't know, was that there was too much damage to the digestive tract for proper absorption to take place. So I continued to get worse even after having gone gluten-free. Finally, after researching, and thanks to this board, I narrowed it down to vitamin B12 and magnesium. I first started with the B12. A sublingual methylcobalamin type. There was improvement, but not nearly enough. Then I added the magnesium, and I was back on my feet in about two weeks! After well over a year of not being able to walk, it seemed like a miracle. I also had the numbness, tingling, spasms, balance issues, and had trouble gripping even small, light objects enough not to drop them. I have also found that a good, strong multivitamin (with co-enzyme forms for all vitamins), has been very helpful.

Personally (and I'm no physician), I don't think your doctors have been qualified to really help you. I don't think you have fibromyalgia, nor do I think that antidepressants are what you need. Nobody gets ill from lack of pharmaceuticals. But nutrient deficiencies effect millions every day. I heard a recent statistic, that over 70% of Americans are deficient in magnesium.

Here's just one of numerous articles which you may find enlightening:
http://www.calmnatur...iraclemagnesium

[hollyres]

RiceGuy, on Aug 29 2009, 02:50 PM, said:

Some of your symptoms are the same as what I had been experiencing. I lost the use of both legs, and that was actually long after going gluten-free. What I didn't know, was that there was too much damage to the digestive tract for proper absorption to take place. So I continued to get worse even after having gone gluten-free. Finally, after researching, and thanks to this board, I narrowed it down to vitamin B12 and magnesium. I first started with the B12. A sublingual methylcobalamin type. There was improvement, but not nearly enough. Then I added the magnesium, and I was back on my feet in about two weeks! After well over a year of not being able to walk, it seemed like a miracle. I also had the numbness, tingling, spasms, balance issues, and had trouble gripping even small, light objects enough not to drop them. I have also found that a good, strong multivitamin (with co-enzyme forms for all vitamins), has been very helpful.

Personally (and I'm no physician), I don't think your doctors have been qualified to really help you. I don't think you have fibromyalgia, nor do I think that antidepressants are what you need. Nobody gets ill from lack of pharmaceuticals. But nutrient deficiencies effect millions every day. I heard a recent statistic, that over 70% of Americans are deficient in magnesium.

Here's just one of numerous articles which you may find enlightening:
http://www.calmnatur...iraclemagnesium

My advice is this: take the advice of people who have been there (as long as it is not harmful) because doctors just don't have a clue. I was on Prozac for 10 years. We all have many different issues that play into our overall health. For me it was an allergy to mold, thyroid, and last but NOT least, gluten. Once each of these issues were uncovered, I bagan to regain my helath and to answer your question, yes, I have regained my life. I work from home, and don't feel comfortable going out into the world yet. I am 40 and been on the road to recovery for 8 years. First, I discovered an undiagnosed thyroid issue, then I moved out of a moldy house, and 3 years ago discovered the icing on the gluten-free cake - no more gluten for me means a new life! Now my 18-year-old is also on the road to good health after he also went on the diet. Life is a journey and not GOOD answers come quickly and healing doesn't happen overnight. It took me a long time, but it was worth it. No, I never eat out, but I love to cook and my hubby doesn't care as long as I a cook a yummy meal. Someday maybe I will, but for right now, I'm not ready. Cross contamination (CC) is very easy to let happen. Sponges, tephlon, counter tops, and kissing (my husband had to switch to gluten-free beer). I am so sensitive that I have to be careful of soaps, shampoo, etc... You can google anything you use and find an answer somewhere out there in cybersapce - especially on this board. But be careful, as old info can be out-dated. My most debilitating problem with gluten: fear and anxiety. I had severe panic attack everyday. Every time I ate my whole stomach area felt like a bundle of nerves that just reached up thorugh my chest and into my brain. Now, I am medication free and anxiety free! You can do it too, if you just have faith that you deserve to be healthy and happy and that there are answers. However, you will have to find them - doctors do not have them. I like Rice Guy's vitamin advice - it is very important to build your body's defenses back up. Learn how to manage your diet. Read everything you can find on the subject and connect you situation with other's stories and figure out how they are managing their situation. Find a support group - that will help also. Hang in there.

[darlindeb25]

Quote

I was wondering if anyone had problems with their central nervous system, including heart palpataions, eye issues, light sensativities, balance prbolems, numbness.

I think this happened to many of us. I used to have diarrhea all the time, yet still, I think the gluten did a bigger number on my head. I first was on Xanax, then Paxil, which I was on for many years. Even now, after being gluten free for over 9 years, if I get glutened, I have neurological symptoms. I still have some balance problems, but that is because of my sensory neuropathy, and my balance is getting a little better.

[Elizabeth Ann]

Thanks everyone for all of your helpful information. It is so good to know I can finally find some answers. I have waited a long time for this kind of information. I look forward to more correspondence.

[swimgal81]

darlindeb25, on Aug 29 2009, 05:08 PM, said:

I think this happened to many of us. I used to have diarrhea all the time, yet still, I think the gluten did a bigger number on my head. I first was on Xanax, then Paxil, which I was on for many years. Even now, after being gluten free for over 9 years, if I get glutened, I have neurological symptoms. I still have some balance problems, but that is because of my sensory neuropathy, and my balance is getting a little better.

Hi,
I am new to this site...although I have been diagnosed with Celiac Disease for four years now. Recently, I have had a lot of neurological symptoms that my doctors believe may correspond to my Celiac. In February, I had a flu-like virus, which left me fatigued for several months, and I am still not my normal self. From the time of my virus, to July, my Celiac blood count elevated from below three, to approximately 40. During this time, I began to develop hand and arm tremors, primarily on my left side, and muscle spasms, in my arms and legs. I also have found it more difficult to concentrate and my memory is much weaker. I also have strange symptoms like body swelling, especially in the stomach, and unusual amounts of wrinkling? In the past, I have been treated with Xifaxin for bacterial overgrowth in my intestines, but I am not sure if all of these symptoms match up.
I began taking the birth control pill Ortho-Novum 1/35 in June; could these symptoms be of relation to the medication?

I been through rounds of tests in the rheumotology department at Stanford University, MRI's, EKG's, you name it, and still, the only peculiar evidence they found was an elevated Celiac level.

I am a college freshman, and am really trying to do my best coping with my new surroundings, but at the same time, want to feel like a normal college student!

Any suggestions would be great!!

Thank you so much!

Regards,

Liv

[darlindeb25]

Are you sure you are not getting glutened? Sounds to me like you are being glutened by something, maybe a med, or a vitamin. If your blood count is elevated, instead of, then gluten is getting you. Some of us are super sensitive, and even the "gluten free" foods will hurt us. Anything labeled gluten free can contain from 5ppm-20ppm of gluten, and be considered safe for a celiac/gluten intolerant. Problem is, some of us just can't have gluten, even if only 5ppm.

Maybe your shampoo, lotions, soaps? Some think this doesn't matter, yet for some of us it does. While washing your hair in the shower, you can get shampoo in your mouth, or conditioner...lotion is on your hands, then on your food...lipstick, make-up, eye make-up...so many variables.

Also, some of us with neuro symptoms take much longer to heal. Going gluten free didn't fix my neuro problems, it has taken years for to start reversing my nerve damage...it can be a very slow process.

The flu-like virus you had, may not have been a virus..it may have been a glutening. I was glutened in Jan of 08 by an OTC bladder infection med, and I was sick for 3 months, lost 24# because of it. Any time I get glutened, I can expect at least 3 weeks of problems.