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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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So I had my biopsy on Friday, still waiting for the results. Regardless, I am gluten free for life because of my blood tests. So I guess I am over here on the "other side" now. :unsure:

Today is day 4, and I feel like crap, which I attribute to gluten withdrawal. I just want to eat an entire chocolate cake right now. :o

Some of my neuro symptoms that I suspect are from gluten are tingling in my toes and feet. I also have been having insane muscle twitches all over my body. Yesterday, my cheek muscle kept twitching all day...and now my left thumb is going crazy! :unsure:

For those of you with neuro symptoms, how long did it take on a gluten free diet to see improvement? Has anybody ever been completely cured of their symptoms?? At what point should I see a neurologist to make sure these symptoms aren't from something else? I had an appt. with a neuro before I got my blood test results, but I canceled it thinking we had the answer.

I would love to hear others experiences!

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It's been about two weeks for me and I'm still getting symptoms that you've described. I guess it takes time.

Ugghh...sorry to hear this, loX4! I guess I was hoping for something dramatic, so far the only thing that is better for me is the gas and bloating. All the other crap is still there.

I think I can....I think I can.... ;)

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As i said in another post, mine ( neuro) lasted 6 weeks going off gluten and faded away. The only things now, is that when I get glutened, the neuro symptoms are much worse. The GI stuff only lasts for 2 weeks. I am now 7 weeks later and still having some neuro symptoms. I am beginning to think, that I may have some permanent damage now. The neurologist and I both think I have gluten ataxia now. It evidently is progressive with repeated exposure.

On the plus side, I feel like someone has taken their foot off the accelerator in my brain for the first time in years. My wife said I am getting to be more like the person she married and I can go to the store and remember why I am there. Nearly a decade of being told I had IBS, with no real testing! May have been able to miss a lot of this and now having possible permanent damage ( mainly visual stuff, but some balance issues)

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So I had my biopsy on Friday, still waiting for the results. Regardless, I am gluten free for life because of my blood tests. So I guess I am over here on the "other side" now. :unsure:

Today is day 4, and I feel like crap, which I attribute to gluten withdrawal. I just want to eat an entire chocolate cake right now. :o

Some of my neuro symptoms that I suspect are from gluten are tingling in my toes and feet. I also have been having insane muscle twitches all over my body. Yesterday, my cheek muscle kept twitching all day...and now my left thumb is going crazy! :unsure:

For those of you with neuro symptoms, how long did it take on a gluten free diet to see improvement? Has anybody ever been completely cured of their symptoms?? At what point should I see a neurologist to make sure these symptoms aren't from something else? I had an appt. with a neuro before I got my blood test results, but I canceled it thinking we had the answer.

I would love to hear others experiences!

I had the same problem when I first went off glutens feeling so hungry. One of the other members here actually explained what happens in the body, it is a process.

The toes could be a couple different things. Toes can tingle if your calcium levels go too low. You want to make sure you are getting enough vit D to help absorb your calcium. GOOGLE "L-carnitine tingling in toes" also. I have had all kinds of problems with tingling, pins and needle pain, and hot feet which all stopped when I started taking L-carnitine.

Muscle spasms/twitched were corrected by taking a potassium supplement, magnesium plays a roll in muscle contraction as well, all of which can be looked up.

How much vitamin D are you taking daily? As I increased my vit D the bugs crawling and hair-like feelings on my skin went away. I take 4000 IUs total in one day, split at each meal.

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Some of my neuro problems went away pretty quickly like depression and the pins and needles sensation. Sublingual B12 helped speed that along.

Ataxia can take longer to resolve. For me the biggest difference was noticed at 6 months and continued to improve for a while after that. My ataxia was very far advanced though and others might see improvement sooner. I had also thought the damage might be permanent but within a couple years the only time I got ataxic was when I was glutened and now that I have been gluten free for 9 years it doesn't even appear then. Physical therapy also helped me a great deal. It can take a long time for nerve issues to heal but they should heal so don't lose hope.

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Have a whole gluten-free chocolate cake. If you make it at home you won't be able to tell them apart like you can with the bought type.

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Some of my neuro problems went away pretty quickly like depression and the pins and needles sensation. Sublingual B12 helped speed that along.

Ataxia can take longer to resolve. For me the biggest difference was noticed at 6 months and continued to improve for a while after that. My ataxia was very far advanced though and others might see improvement sooner. I had also thought the damage might be permanent but within a couple years the only time I got ataxic was when I was glutened and now that I have been gluten free for 9 years it doesn't even appear then. Physical therapy also helped me a great deal. It can take a long time for nerve issues to heal but they should heal so don't lose hope.

Thanks ravenwoodglass :)

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As i said in another post, mine ( neuro) lasted 6 weeks going off gluten and faded away. The only things now, is that when I get glutened, the neuro symptoms are much worse. The GI stuff only lasts for 2 weeks. I am now 7 weeks later and still having some neuro symptoms. I am beginning to think, that I may have some permanent damage now. The neurologist and I both think I have gluten ataxia now. It evidently is progressive with repeated exposure.

On the plus side, I feel like someone has taken their foot off the accelerator in my brain for the first time in years. My wife said I am getting to be more like the person she married and I can go to the store and remember why I am there. Nearly a decade of being told I had IBS, with no real testing! May have been able to miss a lot of this and now having possible permanent damage ( mainly visual stuff, but some balance issues)

before you give up on the ataxia, try CoQ10, this turned out to be my issue, rather than gluten. Though i wouldn't swear that the gluten didn't make it worse.

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Thank you all so much for the advice! I am not taking ANY multi vitamins right now....duh...so dumb! :rolleyes:

I am headed to GNC today to stock up! I am also going to make a Betty Crocker gluten-free devils food cake, and yes, I might just eat the entire thing! B)

One last question....do you think I should see a neurologist and get her take on all of this? What are the chances that she will be familiar with gluten ataxia and all of the other "atypical" symptoms of gluten intolerance? My primary care doc gave me a referral to one before I got my Celiac dx, because she wanted to rule out MS!! :o Or should I give it 6 months or so and re-evaluate, hopefully some of this stuff will have gone away. Would there be any benefit of getting neuro testing now and then tracking the possible improvement on a gluten-free diet?

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    • A mistake that many of, myself included, made! Don't feel bad about it, feel good that you've at least identified a possible cause. I was faced with a similar choice a few years ago and opted to go back onto gluten for a 'challenge' to see if I had celiac. I kept a food diary during this time and tracked the reappearance of symptoms, some gastro intestinal but primarily neurological. I tested negative for celiac much to my surprise, but the challenge confirmed gluten as an issue, so NCGS is best diagnosis I'm likely to get for now at least.  Your question re fructans is a good one and not easy to answer. The fact you've asked it suggests you've done some research and are aware of the unclear science once celiac is excluded. For what its worth I think that what may happen is that some people who get IBS relief from a gluten free diet are indeed correct to avoid the foods, but incorrect in identifying gluten as the cause.  They may actually be reacting to fructans, polyols, or other parts of the wheat,carbs rather than proteins.  However there are also well documented cases where gluten itself is the culprit, some more info on this here and I believe this is where I sit.   You need to decide what level of uncertainty you can live with. Medical assistance will depend on reintroducing gluten. If you do it with a food diary you may learn more about your reactions, maybe even be able to customise your diet to your own body. Most importantly, you would properly exclude celiac as a cause, which is important because its a serious condition and if you do have it, far better to know for both you and your family who may also want to be tested.  Finally, I collected some links and info here some time ago, it may be useful.  Best of luck Matt
    • I wish I had been diagnosed at 19. In retrospect, I was having symptoms as a 16 year old, and didn't get diagnosed until I was almost 30. That delay created a lot of havoc, and other problems that are now permanent (an aggressive case of rheumatoid arthritis and violent reactions to contamination). You want to be non-compliant? Your choice... but the symptoms will most likely get worse... and you could end up like several other non-compliant celiacs I knew... none of the ones who decided to be non-compliant (as opposed to those of us who occasionally get poisoned) lived more than 10 years past diagnosis, and their deaths were ugly (cancer was bad, pernicious anemia and complete malabsorption were even worse).
    • From the Chicago Celiac Disease Center which is one of the premier celiac disease research & treatment centers in the world: Are you scheduled for a biopsy? Are you eating gluten? Any changes in your diet can affect the accuracy of your biopsy results. It is necessary for you to be eating gluten every day for at least 4-8 weeks before the procedure. If you are scheduled for a biopsy and are not eating gluten, talk to your doctor about what is necessary to obtain accurate results. If you have
      a biopsy and have eaten gluten only a short time before the test, you and your physician will not know if a negative test result is accurate or due to your diet. Here's a link: http://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets5_Diagnosis.pdf Also, you might want to read this: http://www.cureceliacdisease.org/faq/can-an-allergist-help-with-celiac-disease-or-does-a-better-specialist-exist/  
    • My panel was the same as yours........all tests positive by large numbers so you can consider yourself a Celiac.  Are you very symptomatic? I will add that I did not eat Whole Foods exclusively when healing.  I needed to gain weight badly so ate gluten-free bread and a few other things that seemed to agree with me.  Never had a problem once I went gluten free, except to discover that I had a problem with dairy also. But I healed well and all is good.  You'll be fine now that you know what the problem is.  Good luck!  
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