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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Facial Numbness, Dizziness, Joint Pain, And Other Issues
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14 posts in this topic

I am going to try and keep it short although my story goes back ten years. Ten years ago, at 30 years old, I had a badly ruptured disc in my neck. I had a anterior cervical discectomy with fusion. A few weeks later, I got pregnant with my first child. The vomitng was severe during my pregnancy. I was put on medication to be able to keep down food. Headaches, dizziness, fatique, eczema, and slew of other issues ensued after giving birth. The vomiting continued on nearly a daily basis for the next seven years. I saw a gastro doctor several times with no findings. Finally, I asked to be tested for Celiac Disease. The result was only slightly positive. A biopsy of my intestines was negative. However, my esophagus was a mess and it was mentioned that perhaps I had Eosinophilic Esophagitis. Regardless of test results, a gluten free diet gave me relief for nearly a year and a half.

Several months ago, I suddenly started having dizzy spells. My vision would blur, the right half of my face would go numb, the right side of my body would get heavy and weak, people sounded like they were talking through a tunnel. It would pass several minutes later but the facial numbness would remain for an hour or more. Stroke and heart issues were ruled out. a brain MRI showed "dural calcifications at the vertex" and I was told that was normal. My spine showed three ruptured discs and osteoarthritis. Two months ago, I had another anterior cervical discectomy with fusion on two of the three discs. I had a hard time swallowing for a couple of weeks after and my daily vomiting has returned. The surgery fixed the weakness and pain in my arm but I still have issues with dizziness, numbness in my face, and weakness in my right leg. I also have terrible pain in the joints of my toes every morning or if I sit for any period of time.

It is obvious to me that gluten was making me very sick. I am still gluten free. I don't know why this is happening again though or if any of it is related. Any advice or experience would be appreciated. I am hesitant to go back to doctors. I am so tired of them trying to give me Prilosec or telling me that it is all due to anxiety. Really, I think I would know if I was anxious........for ten years. jeesh :blink: Thank you

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Hi, I'm terribly sorry to hear about your struggle. I was especially interested in your post because my brother has been dealing with the same thing since June of this year, and still has no answers. MRI comes up clean, but he does have disc issues and has arthritis of the spine. I hope someone else can shed some light on this for your sake and my brother's. All the doctors keep telling him is that "it's all in your head...take these anti-anxiety drugs." :ph34r:

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Hi, I'm terribly sorry to hear about your struggle. I was especially interested in your post because my brother has been dealing with the same thing since June of this year, and still has no answers. MRI comes up clean, but he does have disc issues and has arthritis of the spine. I hope someone else can shed some light on this for your sake and my brother's. All the doctors keep telling him is that "it's all in your head...take these anti-anxiety drugs." :ph34r:

Is he having all of the same issues? The "it is all in your head" crap is so frustrating. My husband noticed a short time ago that my toes were starting to bend the wrong way. I am sure I can't make that happen in my head. :unsure:

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Are you seriously gluten free? If so how long? If not what is your diet like?

Obviously you have something very serious going on and it is time you demand some action and if your docs won't play the game, then you need to pay all that money to someone who is willing/able to help. Research (post on here for example) for specialist that are sensitive and objective when it comes to your conditions.

If gluten is your problem you need to get strict. If gluten is already eliminated from your diet then you need to get some realistic and decent health care.

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Are you seriously gluten free? If so how long? If not what is your diet like?

Obviously you have something very serious going on and it is time you demand some action and if your docs won't play the game, then you need to pay all that money to someone who is willing/able to help. Research (post on here for example) for specialist that are sensitive and objective when it comes to your conditions.

If gluten is your problem you need to get strict. If gluten is already eliminated from your diet then you need to get some realistic and decent health care.

Yes, I am very careful about the gluten. I have eliminated it. If I happen to get gluten accidentally, I know it rather quickly. It has been almost two years since I went gluten free. I avoid processed foods, cook from scratch, and do my very best to buy all natural organic when I do buy produce and packaged food. My downfall is a sweet tooth. I try to control myself.

I wish that I could find a doctor. I have searched and asked others. I am not even sure what kind of doctor I should be trying to go to. I suppose someone that specializes in autoimmune disorders. I can't imagine what else this could be. I am in Southeastern Massachusetts if anyone knows of someone that is good.

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Yes, I am very careful about the gluten. I have eliminated it. If I happen to get gluten accidentally, I know it rather quickly. It has been almost two years since I went gluten free. I avoid processed foods, cook from scratch, and do my very best to buy all natural organic when I do buy produce and packaged food. My downfall is a sweet tooth. I try to control myself.

I have no idea if this would be relevent at all, but like you, I had a major sweet tooth problem. If I ate one cookie, I would eat ten--I couldn't stop. However, I found out I am allergic/sensitive/whatever to sugar--cane/beet sugar, honey, agave, xylitol, raisens, dates--haven't tested molasses. Just one other thing to consider.

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Have you been screened for other autoimmune diseases like RA?

You may also have other food intolerances causing the vomiting.

I'd get to an endocrinologist...

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and a rheumatologist. Rheumatoid arthritis can cause deformation of joints, like you are experiencing in your feet. So can simple bunions. Either one will cause extreme pain in the foot.

Muscle weakness and numbness can be caused by any number of other auto-immune diseases, such as lupus, psoriatic arthritis, multiple sclerosis, and on and on...any auto-immune disease unfortunately is going to be a b%$@# to diagnose. I've recently been tested for quite a few of them, and all results keep coming up indefinite. It "might be..." seems to be every doctor's mantra that I've seen! The last one said "I'd like to see *more symptoms* before I can give you a definitive diagnosis" ugh...

A rheumatologist can dx/treat many auto-immune diseases. If they can find you a diagnosis. I hope you have better luck than me.

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Thank you everyone. Ironically, my primary care doctor is a rhuematologist. My SED rate was only 27 so he disregarded any thoughts of RA.

My sister had rotar cuff surgery in September of 2010 and has been in agony since. Her arm is very painful and is swollen to 150% the size of the other arm. They did two more surgeries to try and fix it. They thought that maybe she was rejecting the hardware. Last week she finally saw a doctor that diagnosed her with something called CIDP. It seems that surgery triggered it. Apparently it is very rare though and unlikely to affect more than one person in a family. I read the symptoms though.......and I wonder.

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Sounds to me like nerve damage. We have various groups of nerves in our body that connect to the various tissues, joint, and organs. The various groups manage certain areas of the body, one of the various groups of nerves manages functions to the brain and eyes which will cause the issues you are describing. I have neuropathy issues and wanted to learn more so bought a book which have been reading ans what you have described sound very much like what I was reading in my book.

I have posted under "Coping," posted is 'Peripheral Neuropathy My Book came in, Sharing.' I have several posts in that thread that I think you will find beneficial. If you are interested in the book, it is "Peripheral Neuropathy" by Norman Latov, MD PhD

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Another dietary area that might be causing issues is 'excitotoxins'. When you said you mostly eat fresh foods you prepare yourself, I thought that might not be the case. Then you mentioned a sweet tooth, so I decided to at least mention it. Do you eat or drink any artificial sweeteners, such as aspartame / equal? I know I used to drink diet coke years ago, and realized they were giving me headaches so I quit drinking them and avoid anything with aspartame. I also have bad reactions to MSG (aka monosodium glutamate), which is also considered an excitotoxin. They basically do most of their damage to the nervous system, for those who are sensitive. One of my symptoms for MSG is facial numbness, which is what made me think of it.

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Another dietary area that might be causing issues is 'excitotoxins'. When you said you mostly eat fresh foods you prepare yourself, I thought that might not be the case. Then you mentioned a sweet tooth, so I decided to at least mention it. Do you eat or drink any artificial sweeteners, such as aspartame / equal? I know I used to drink diet coke years ago, and realized they were giving me headaches so I quit drinking them and avoid anything with aspartame. I also have bad reactions to MSG (aka monosodium glutamate), which is also considered an excitotoxin. They basically do most of their damage to the nervous system, for those who are sensitive. One of my symptoms for MSG is facial numbness, which is what made me think of it.

I avoid artificial sweetener like the plague. Unfortunately, I grew up drinking Diet Coke in place of pretty much every other beverage possible. I stopped drinking it about ten years ago but up until then, I consumed a lot of it. I avoid MSG as much as possible. I recently got a list from my sister in law listing all of the other names it can be listed under. I had no idea. As far as sweets go, it is usually stuff that contains cane sugar. High fructose corn syrup I occasionally have, not good I know.

Thank you everyone for all of your suggestions. I will look into them.

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Have you ever been checked for Gluten Ataxia? It can be tricky for doctors to diagnose because it, too, is caused by gluten, but it's not celiac disease.

It hasn't been studied too much yet, tests for it are still under development (although they are getting very close, now), and treatment may differ a bit from celiac disease. But if you can find a neurologist who knows about this, you may be able to get some help exploring this as a possibility.

There's a good article on it here: http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html

There's also a yahoo group now for people suffering from this issue:

http://health.groups.yahoo.com/group/CeliacBrains/

The group isn't greatly active, but they are good about answering questions in terms of symptoms/doctors/tests for those with gluten ataxia specifically. These can differ from what's needed for celiac disease, so it's a good thing to explore is you suspect this may be an issue.

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Do you think a podiatrist might be worth seeing regarding your toes bending the wrong way? It sounds as if this may be related to your other issues, but a podiatrist might offer a different perspective for you and your other specialists to explore and perhaps offer you another piece to the puzzle.

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