<<Disclaimer: Verify this information before applying it to your situation.>> > strange symptoms they include muscle twitches in my legs and arms. My nose > will itch and my whole body will tremble. In addition to these there > feels like there is a lump in my throat on the left side. when I > swallow I want to tilt my head to the left. However I don't feel a > lump by touch. It seems like I can't get enough sleep. Very tired. > I will wake up at 5 am and want to go back to bed at 9am. Today it > feels more like a panic attack. > > I got the lump and feel light headed. I know I have been gluten free > and can't figure out what is going on. And the thought of explaining > this to a doctor scares me. Does anyone know what sort of doctor I > would go to? I am very confused. Does anyone out there have anything > like this ever happen to them? I doubt this is gluten-related, actually. It sounds like a thyroid problem to me. Please go to your regular doctor (or an endocrinologist) and have them do a blood test. Thyroid problems are fairly easy to treat and sometimes go together with other auto-immune disorders. If it's not a malfunction of your thyroid, then you can look for other causes. But this doesn't sound strange at all. Good luck! -Christie ******** Start with your internist. Although I am not in the medical profesion- I wonder about your thyroid? An endcrinologist would check that- but your internist could order the basic test too I think. Do see a doctor, but before you go, make a list of symptoms, and maybe a calendar of when they started and are happening, so you can give the doc a quick picture of the situation without forgetting anything. Good Luck. ******** Hi Heather~ I don't have a clue about your weird symptoms, but wanted to let you know I'll be praying for you...the best thing for a panic attack! Lisa Reynolds<>< ********* Hi Heather, I would definately see a doctor if I were you. The syptoms you describe could be neurologic in nature. My daughter was diagnosed with a Chiari One Malformation and Syringomyelia last year. Her symptoms were very much like you describe. The best doctor to go to would be a good neurologist, one that is very familiar with Chiari. I would insist at the very least of having MRI's done of your head, cervical and thoracic spine. Usually they will only do head and cervical spine. They found my daughter's syringomyelia in the upper part of her thoracic spine. These are not symptoms of Celiac, so make sure you have them checked out. Christine ********* You may have an iron deficiency. I had similar symptoms including leg cramps. After I began taking over-the-counter ferrous sulfate, the symptoms went away and I feel much better. Judy ********* Heather- always behind a panic attack, there is a whole story that usually is not recognized. There are two ways to deal with it. One is to take a tranquilizer until the crisis (whatever it is) is over. The other is to sit down with someone who understands human nature and work it through. The tranquilizer approach works, but only by postponing the issue until next time. The analytic approach not only works better, but adds to one's self esteem and understanding. Judging from your post, you are a good observer, naturally analytic and contemplative. I think you should take this opportunity to do some exploring of yourself. The trouble is, there are all kinds of incompletely trained people who offer assistance who are not really capable of delivering what they promise. How to find such a person is the problem. I can tell you that the best people will not offer tranquilizer or other drug options, for the reasons listed above. Start by asking about drugs. If the doctor offers a drug, ask him for the name of someone in your area who does not use drugs. Some good therapists will answer by saying that they have no objection to drugs, but do not recommend them. I am a retired general practioner with special experience and training in psychoanalysis. My wife and four of my six children are celiac and I know what a tricky business celiac can be especially when you are experiencing "strange symptoms?. I will go through this with you by Email if you want. Good luck and let me know what you think about my thoughts, whatever you decide. Jack Maines, North Creek NY (using my wife's computer). PS- some of the MD"s who are experienced in treating celiac disease, like Joseph Murray at the Mayo Clinic in MN, or Peter (?) Green in NYC might also be helpful. JM *********** Hi Heather: I've been gf for 8 years - but have unfortunately experienced several epidoes of somewhat bizarre neurological symptoms. The first go around: parathesias (tingling sensations that run up and down the body), pins and needles, numbness, some painful neuralgic stuff. Solutions: Got with a great osteopath who understood nutrition and I did much personal research into malabsorption/nutrition (which can be hard as there isn't much out there regarding pure nutritional science). Started with B12 injections - even tho none of the many blood tests revealed any deficiency. Began taking high quality vitamins: sublingual b complex, ester-C, multi - etc., etc. The osteopath was a life saver - a neurologist at the time was worthless. Second and worse problems: Hypnic jerks - something that prevents me from falling asleep - very rare apparently. Also developed twitching all over at approx. the same time. Solution: Neurontin (prescription drug via neurologist - a good one this time) very expensive - but effective. Also MAGNESIUM. I would really look into the mag. if I were you. I think I read something at some point about the lump in the throat being associated with that too. Something I also experienced in between the neuro. things. Had a swallow test that didn't show anything. The mag. of course needs to be taken in moderation - as it is laxative in nature. A good one is important - as there are several forms of it. I take SolarRay brand - Magnesium Asporotate. Interestingly enough - the mag. "cured" a chronic PVC (premature ventricular contractions) heart palps that were very annoying - had lots of tests for... Celiacs don't absorb vitamins and nutrients very well. For some reason most physicians "don't get it". Good Luck - let me know if you have any questions. -Laurie *********** I have had these symptoms too. The feeling of constriction in the throat is kind of alarming. I don't have any good explanation, though. I had them a lot until I went gluten free (since April). I still have them sometimes -- I've been assuming I must still be getting some hidden gluten. It's very frightening, and like you, I don't quite know what to do. I'm tired of talking to the doctors because none of them know much about celiac disease, so I just try to keep going and still keep trying to stay gluten free. My neurologist hasn't ruled out MS completely, so I suppose this is still a possibility. Also, I am taking an antidepressant (Celexa) and Provigil, which is for the fatigue symptoms and after reading about them, it's possible that some of these symptoms are just side effects of the medication. Are you maybe taking any antidepressants? I am hesitant to just quit the medications, as I think I really need them. I don't have any good answers, but maybe it helps to know there are others out there experiencing the same things. Janine Boise, Idaho ********* Hi Heather, The details of your symptoms reminded me of the kinds of details homeopaths like to hear. I have no idea what homeopaths are in your area, though. Maybe chiropractors and/or naturopaths would also be interested in those kinds of details, too. Amy in Mpls. ******* Hi Heather: Know how you feel, strange things happen a lot. Although I have not been diagnosed, as I refused to go on gluten long enough to have the biopsy done, I do feel much better on the gf diet. The gastroenterologist suspects that I have been Celiac most if not all my life. I also have a large hiatus hernia, and have a problem with eosphagus spasms and they hurt, had one today, and had to take some Dioval. It takes time to release but does. I also have diverticulitous, spastic colon, along with the Celiac. I had 2 ablations done on my heart in 1997 as I had suffered from tachychardia for nearly 30 years. Now they are trying to figure out why I have fast heart beat, more so when I move fast, or lie down at night. Also I have noticed that I feel a little light headed at times, more lately and have told my doctor. Just explain how you feel, and describe it the best way you can, if he laughs at you, find another doctor. Some doctors have not compassion at all, and have never been sick to know what it feels like. I am also very tired, could sleep for days, then for a while I am okay again. But when I get bad, I can just fall asleep no matter what I am doing. And I have muscle spasms, legs, back, and lately have had trouble swallowing. Had that checked out, and found the large hiatus hernia. So please, know that you are not alone, as to what causes any of it, who knows, as I don't think the medical profession knows enough about Celiac, and some really don't care, and will tell you that it is all in your head. NO, NOT. Good luck, Joan, Ontario ******** Heather, Have you had your thyroid checked? I have panic attacks, although I am on thyroid meds, I find when I have these attacks the thyroid is out of balance. The dr. says it is the panic attacks making the thyroid malfunction but I say it is the thyroid causing the panic attack. Of course it is the same as with celiac, the dr. makes you feel like you need other proffessional help, or it is stress, you probably know the way they make you feel. I would suggest you go to your family dr. and explain it to him and ask for thyroid tests and a mild relaxant until you get the results of the tests. It is scary isn't it? I talk to myself when I have them and tell myself it will pass and I am not going to pass out and everything will be ok. Convincing yourself of that isn't always easy. I am 62 years old , have Celiac.(biopsy diagnosed 18 years) hypothyroidism(on meds for 25 years) , pernicious anemia(dx'd at the same time as celiac) , osteoporosis, mitral valve prolaps and a few other medical problems and I just retired from work last month. During the time I was so ill, I had to keep working as I was a single parent. I still have the odd gluten reaction especially when I eat out.(which isn't often) Wyn from Canada ******** Heather - have you had an endoscopy? I have had some trouble swallowing food in the past. I am on prilosec for reflux - have you been tested for that? My gastroenterolgist does my primary care and I feel very confident with his referrals where needed. AS for the tremors are you by chance on any serotonin uptake meds like Paxil or Prozac -they have tremors as side effects. I have benign essential tremors which were aggravated by being on Paxil. I do not take meds for the tremors as they are hard on the gut and my neurologist and I have decided to put off aggravating my insides any more than necessary for the time being. I am now off Paxil and my tremors are back to "normal" (only when tired and stressed). One easy out might be just to up your potassium levels if you have not done this before - helps leg cramps etc. Just reread all that and realize I sound in bad shape -not true - I think with impaired autoimmune disorders we are susceptible to a lot of problems. Keep your chin up! Janie ******** Many Celiacs and others with gut problems have thyroid related problems too. A simple blood test added to your next series of bloodwork will tell you a lot. Check for TSH levels, your doc should be able to explain all. If there are thyroid problems found, email me back for a comprehensive web site on that and all related things. Chuck ********* Please have your thyroid checked immediately. Elysse R. Paige Human Resources Analyst Medical Management Program Housing and Dining Services ******** Heather, I am new to this too, only diagnosed 2 months ago. But, have you been tested for vitamin and mineral deficiencies? I have neurological symptoms and muscle weakness which we are still trying to determine cause--may be due to my vitamin deficiencies, may be due to Celiac Disease itself (which was diagnosed attempting to solve weird symptoms I have been having) or may be due to a co-occurring other autoimmune disease. I would start out with your general practitioner and see who they suggest you follow up with. I have been to many myself and the list of referrals continues as more test results pour in. Good luck and God bless, Linda ******* Heather, Sounds like may be allergic 'tension-fatigue' syndrome. Problem now is to determine exactly what food or inhalant (or foods/inhalants) are responsible. That may take a long time since possibilities are endless. Need to be a detective -- with my clinic patients to determine food-allergens I put them on a diet which can be determined to be 'safe' -- no guarantee it is, of course. Technique is called "add-back" elimination diet - patients usually quit before we accomplish anything. Create a diet consisting of 1-2 proteins, 1-2 fruits/vegs/fats -- eliminate all grains! Very important: use only foods which you rarely eat - intolerance occurs usually in foods we love or eat continuously. Keep eliminating foods until you can 'clear' all symptoms for 2-3 full weeks -- then "add-back" foods 1 at a time separating them by 3 days ('test' 2 foods/week approx.) Save grains for last (no gluten of course) and permanently eliminate foods causing a reaction. Can re-try in about 6 months or so, if desired. This technique is time-consuming, irritating, difficult (only whole, un-processed foods to be used as 'baseline' safe diet - no combinations or chemicals or molds: fresh foods.) But it can "unmask" the allergens so when you do react to badly tolerated foods, you may do so violently. ** Problem: usually inhalants are a factor also and they are harder to eliminate than foods (dogs, dust, cats, birds, trees, molds, wool, even cotton, some plastics .........) If you can find a sympathetic allergist, would be helpful. Usually inhalants are seasonal (not always tho) so that may be a clue -- if you have pets, almost definitely they're a problem (can clear out the pet - can't clear out the microscopic dander from the air for over 3 years! even with air purifiers - and molds live on the dander in the air, in the heat'g/cool'g ducts, bedding, rug fibers, etc.) And blood work is very inconsistent as diagnostic tool to screen for allergies. ** Gluten- free diet which eliminates celiac/DH symptoms can be the factor that unmasks the other allergies - and all allergies do not clear after maintain'g g-f lifestyle. (I am battling with the problem myself-- not with much obvious success - but all dairy seems to be a very common problem and is for me, I think -- not just lactose (milk-sugar) but intolerance of casein, whey, lactalbumin - just a few of the 40 or so milk proteins!) Best of luck -- might try working w. the foods alone first, to save your sanity. Later if still problems, try inhalants. ********* Sounds like your thyroid may be going nutty. The lump could be a goiter or swollen gland in the thyroid gland. The muscle problems can certainly be related and absolutely the tired - not enough sleep. Have your thyroid tsh/t3/t4 levels checked. Best wishes, Jill ******** Have you been checked for thyroid disease? The fatigue reminds me of that sympton that appeared about 6 months after I was diagnosed with celiac. I insisted on the blood test and was diagnosed as hypothyroid. Hope this helps you. ******** Could it possibly a thyroid problem? Just a guess on my part..my sister had twitching before she was dx with thyroiditis which is an autoimmune disease also. *********** As well as having Celiac, I've been diagnosed with mitochondrial myopathy, which seriously affects the cells of the muscles. Fatigued, cramping, jerking, etc. all the time. Not only do my cells lack nutrients because of the Celiac, but also the essential elements of a healthy cell to make energy even if it was getting them all. A real double whammy. Fortunately we have one of the (if not the) leading reasearch centers in the world here in San Diego at UCSD. I was extremely fortunate to get to see one the leading researching MDs who put me on CoEnzyme Q10. I can not tell you...I cannot describe even to my friends, the immediate improvement of Biblical proportions that this gave me. Where had my life been all these years? The fatigue, the clumsiness, the foginess, the running out of gas midway through the workday, the waning interest in things, the ho-hum social enthusiasm. All gone and virtually overnight. As a middle-aged male who's been around the track, I don't jump on bandwagons nor go for any of these diets that are always coming along. I'm very conservative and only rely on the proven word of a highly-skilled physician. Nothing against homeopathy, herbal medicine or any of those, but I'm ultraconservative and traditional. So when I tell you that this gave me my life back, and instantly, you're getting that from a hard nut to crack. Turns out that while I hadn't heard of it, all my friends were taking it on a lesser level already. The best I've found is CoQ10 in combination with carnitine (they work together in the cells) which you can get anywhere. GNC has a good formula. (I'm not espousing this store...in fact, I take another brand now due to the co-formualtion with vitamin E which CoQ10 should be taken with and the bulk that I have to buy it in.) I'm not "ennervated" ( I can't even drink caffeinated coffee) nor "stoked." I wouldn't go for anything artificial nor that would falsely raise my metabolism. But to get it back to where it should have been all the time, everybody says I'm my old self, and coincidentally lost 10 pounds I didn't set out to lose (although I should have.) I have as much gas at 5PM as I do when I show up for work. It's amazing. Please post this to the group in your summary. I'll bet many could use the info. Oh, and by the way, the biggest concentrations of CoQ10 in the body are in the liver and the heart. So if your heart (which is muscle, after all) is dragging along or irregular, this could get it back on track. My PVCs (pre ventricular contractions), and pounding and missing have stopped. ************* Heather: Get thee to an endocrinologist and have a full thyroid panel done, including TSH, Free T4, T3, and thyroid antibodies. You may have an autoimmune thyroid problem. Cecilia Vohl Cecilia's Gluten-Free Grocery Email: [log in to unmask] Web site: www.glutenfreegrocery.com Phone: 775-827-0672 Fax: 775-827-5850 Toll-Free (orders only): 1-800-491-2760 ********** Sound like Gluten to me. Are you very sure that there is no comtamination, ??? have you been eating out. Calcium with magnesium will take care of the muscle cramps. This is just from my experience. Hope this helps. Dwight ************* hi heather, read your email on st johns list. i have had the lump in throat and tired and weakness. for me it was an allergy response to food or a supplement. i had to eliminate other things besides gluten, like caesein, soy , and all grains for now. had to work on candida better too. i have had the best success with supplements from www.kirkmanlabs.com. they have hyperallergenic ones that i do best on. i am very sensitive. i have been going to dr. john frey chiropractor in ft. myers and did alot of testing with him. he tests for everything glutens, allergies and metals, candida and bacterias. takes awhile and it is out of pocket cost. good luck to you. it takes awhile to get to figure it all out, harriet