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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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I just met another Celiac with moderatly bad tremors, noticeable in her head and hands (like Katherine Hepburn's). I'm wondering if there might be a link with celiac disease? No other cause has been found in her case. Any other anecdotes?

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Guest barbara3675

I have a slight tremor in my hands that my neurologist is watching, but I think it might be more related to my fibromyalgia than the gluten intolerance, I don't have celiac disease, actually. I really think all of these things are related----the intolerance and the immune system and the tremors. She was hinting at doing another MRI, had one a couple of years ago. I said no. What would it prove anyway. I suffered with migraines for 30 years and I feel that after that kind of pain, damage is done in your head and in later years you just are worn out and things go wrong. Fortunately the migraines don't come much anymore and if they do, I have pills that make them go away.

Barbara

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Since going off gluten two weeks ago, I have developed a tremor in my hands, just slight. Told my doc she has no clue whatsoever.

Tell me some symptoms of fibromyalgia because I have been having:

lightheadedness, tremors, tender spots on my body that feel bruised (all over) but aren't, vision changes, memory/confusion problems.

It's not low blood sugar or diabetes, either.

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I have fine tremors. The thyroid DR. said it was from the thyroid

disease I had. They aren't as bad since I had half my thyroid

removed.

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Guest barbara3675

Interesting....I also have a thyroid problem and take Synthroid for that. Fibromyalgia, for you that asked, is a form of arthritis that is pain that is not in the joints, but in the muscles and ligaments. You have to have tenderness in 18 points of your body for three months to be diagnosed which I was over a year ago, but now it seems to only bother me from my shoulders to my fingertips the most. Like I said, I think all of this is connected....and I hadn't included the thyroid at the time. Often those with fibro also have a thyroid condition. Thanks for including that with the package.

Barbara

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I have a mild (by my definition) head tremor that my husband is scared may be early Parkinson's. I've had it for years and it has never worsened, so I haven't followed up with a neurologist. But your question poses new possibilities. Hmmmmm . . .

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Hi, My son (19) was diagnosed with a benign essential hand tremmor about 5 years ago. He is gluten intolerant. He is on the gluten-free diet now (3 months) and I wonder if they have gotten better. I will ask him when I see him (he is never home..LOL)

Lisa

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The root of both the tremors and the fibromyalgia can be celiac. I have the hand tremors, the neck jerking like Parkinsons, and small muscle jerks in my face and hands. It was several years of gradually increasing problems with both problems and finally becoming disabled before the docs caught the celiac in me. The tremors are much better and so is the FMS.

If your tremors are bad enough to be causing a real problem, ask your doc about some of the medications used to control them in MS patients. I take Gabitril and it really helps. Most of the others are not gluten-free. You may also want to avoid soy because the endocrinologist says it can contribute to both the neurological and thyroid problems. He read me the riot act over it.

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I have tremors of a different sort. I started having seizures. Well they seemed to have all the actions, tremors, faintness, weakness, confustion, headache post tremor. I have had mri,ct scans,eeg's ekg's, hospitalized. All negative for epilepsy. I was so glad. But still was having spells. I have been off work now since 3-20-04. Doctors don't want me to drive because spells are unpredictable. After having a spell either active or pass out feeling, I usually keep one eye closed. I"m not sure if it's the same eye each time

I do have restless leg syndrome and take mirapex( parkinsons meds). When I sit next to someone, I notice I rock my head or body slightly. I guess I am more aware of it.

I have read the triggers of celiac on this site. extreme emotional stress can trigger the diesease. I have had a very emotional 4 yrs. 1999,2000,2001,2002, I lost my best friend, a close aunt, father in law, and 2002 had a miscarriage 6 wks later lost dad. (cancer). My mom found out she had cancer again after 20yrs just 5 wks ago. She pasted away last week. My mother in law found out she has level 4 cancer and started her chemo and radiation monday. I'm not after pitty. I guess this is more like therapy for me. I didn't mean to carry on and on.

Please say a prayer for us.

God bless

Deb

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Hello Deb,

I'm very sorry for your loss. But I thought this might be evidence, that some people in your family might be celiac, too. Without knowing it. Since there are so many cancer cases.

Hugs, Stef

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Deb, I am so sorry to hear about your losses. I will pray for you.

The apparent seizures can also be part of the neurological component of celiac. I have them as well. To look at me when they occur, even the paramedics and ER docs think it is a seizure. The neurologist has done all the tests and they are negative for seizures. The longer I am gluten-free, the fewer of them I have. If I get glutened accidentally, they return.

Keep on your gluten-free diet. Consider also going soy free (the endocrinologist says the latest research may be pointing toward soy as a trigger for neurological problems in celiacs). It will get better. I hope you have as positive a long term experience as I have had.

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I have nerve damage to my right eye, because of celiac. Before diagnosis, when I was tired, the right eyelid sunk down and I couldn't open it anymore. Amazingly this changed after going glutenfree. Among other doctors I was sent to some neurologists as well. But all the tests were negative as well. Nobody found anything...

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Thanks for your support!

I am going to make another appointment with my neuro & gasterologist. I'm starting to have pain in my hands/ feet/ankles/knees. Slight swelling. My rash is spreading farther down my left arm and starting on my thigh. I know with all the stress during the past month, I can't tell if it could be caused by a accidental consumtion of gluten or the stress. All I really want to do is sleep. (Gluten or just wanting mom??)

Debbie

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The sleepiness could be either. Both will get better with time. Stay gluten-free and keep mom in your thoughts.

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I used to have fainting spells that mimiced siezures. It was vaso vagal (I think that's the correct spelling) syndrome. It was an abnormal adrenalin response that would cause my heart to beat so hard that it became inefficient. This would then cause oxygen deprivation to the brain. Once I went gluten-free it has only happened once in the last 14 months.

Do your siezures happen when you are sitting or lying down?

If they only occur standing up then it may be what I had. Do they occur when you go from sitting/lying to a standing position quickly? The blood shifting in my body was enough to trigger the response. I was checked for this and the doctors explained that siezures can happen anytime any place but the vaso vagal almost never happens unless you are standing up.

I used to suffer from extreme fatigue before going gluten-free now it is hard for people to keep up with me.

Ianm

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My spells can happen while walking, standing, sitting, lying. Sitting here at the computer can be difficult. Alot of times I feel my upper body getting tired and weak. I feel like a ballon being deflated. At this time I lye down because I'm not sure if it's going to be a active spell.

How's your consentration(?) staying on task. Simple things I used to do can be overwhelming. If I have to get ready to go somewhere, but first staighten up the house, or pay a few bills, I find myself not being able to be on time because I stop to lye down. I was able to multi task before. I must be getting gluten from something. I know I have to get my head on straight, and tune back in with my body.

Just wondering, how do you put pictures with your postings??

Debbie

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Hi,

My mother, who passed away on Valentine's Day, suffered over 20 years with a condition known as Trigeminal Neuralgia. She had terrible pain along the nerve in her face. Her face really twitched a lot as she got older. They treated her with seizure medication, Tegretol, for a lot of years. It kept her pretty well stabilized but she had outbreaks when she really suffered and had to be given Vicodin for the pain. I feel like I inherited a lot of problems from her, she did have some symptoms of gluten intolerance but never got as bad as mine. This is one disease

(trigeminal neuralgia) that I hope I never get. I'm hoping by staying gluten-free that I can prevent it. Has anyone ever read about this condition? It is also known as Tic de leroux? Sorry about the spelling!

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