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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.

Does This Sound Like Celiac Symptoms Please Help!
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Hi everyone, I hope you can help me with my problem.It seems since March 2012 that my health has been on a steady decline and at 36 yrs old this worries me greatly.I have had blood testing(allergy tests),the following items im allergic to (soya,pollen,dustmites both types 4/5,peanuts,hazzlenuts and tree pollen).I also asked for the gluten testing (not celiac) but gluten and it came back negative.Before I start my story here is a brief summary of problems i've pretty much had my whole life.Random heart palpatations that vary ,come and go when they please.(Have had echoscan,ekg etc..nothing).I always had digestion problems that progressively got worse with age.I would always be either constipated or the opposite,and ton and tons of heartburn(which I always attributed to stress and coffee).I also have hemmorroids and those get worse with caffiene.And in final i've also always been a nervous fellow,even though sometimes when nervous im not in a nervous situation?

Now for the downfall of March 3rd 2012 to date.In 2011 I decided to do weightlifting and everything was going great.I then started taking supplements,lots(not steroids or illegal drugs),but protein shakes,pre workout and post workout shakes (amino acids etc).Everything was going fine until a few weeks at the end of feb 2012 everytime I went to bed id have wheezing like tight chest but no problems breathing.Then in March something pretty big hit me in my personal life, and on the 3rd I woke up with a tight chest in the pectoral area.I was also dizzy,so off I went to the doc's after a week of it not going away.He did EKG,blood work,urine work etc.....Came back negative and he said my muscles were super tight.Ok I said,ill back off the weightlifting and leave it alone for awhile.About two weeks later my chest eased up to normal,but I still felt off.I started slow again and then major back pain happened.I't was bad enough to bring me to the ER,and the gave me lyrica and sent me home.I went back to doc's and demanded MRI of spine,shoulder where my pain was.This came back neg, and he sent me for physio.I attended a few sessions and they said could be a rib out of place(even though xrays/mri's said none of that).I finally went to another clinic for massagetherapy and an osteopath.By this time my heartburn was record breaking and my neck was tight and I had jaw pain.(not clicking or popping sounds and the jaw worked just fine) but pain in front of ears.....my guess was the neck tension was throwing everything off.(Keep in mind I have stopped the weightlifting by now completely,and supplements).The only thing that helped me was massage therapy.This is where she discovered the sheer amount of real muscle knots everywhere in my upper back,shoulder blades ,neck etc.

After going through a few months of massage therapy ,stretching etc,other stuff started.Sinus problems,dizzyness,light sensativity,tingling in tongue,and finger tips,feet etc.Went back to the doc and starteddemanding further tests (diabetes,thyroid,red cell,white cell counts,urnie tests) about 4-5 times and everytime came back negative.Went for an endoscopy(tube down the throat) came back negative for ulcers,Hpyroi bacteria biopsy also negative.I also had probably 4-5 more xrays of lungs,spine and always negative.Then I went to a TMJ specalist thinking I threw my jaw off and hence all the muscle tension(doesnt explain stomach problems) but at this point what did I have to lose.He tried to find something but he said my bite was dead on,slight deviation of jaw that lots of people have etc.....He suggested allergy testing given my sinus problems.I went for expensive allergy testing, and above is what they found.I also went to an ENT and she said my nose was swollen shut inside and looks like allergies,gave me lots of drugs and sprays.She explained to me the post nasal drip could be causing my stomach issues?? Hmmmmmmmm,seems like a lot from one weightlifting accident?!?! almost impossible but im no doctors.I went through the whole summer with major sinus issues and back pain,dry mouth ,eye sensativity etc....

Once I got my allergy results I decided to cut out soya(soy), wow its in everything!!! So anyways I was doing a pretty good job of doing this,even the massage therapist said wow you barely have any knots!! And in all faireness my back started feeling better.Anyways winter hit and my sinuses struggle was still there so I started dustmite/pollen immunotherapy ,plus upgraded my sprays etc.Also I started eating chocolate (only the ones with soy letchin) and oddly this didm't help at all.I started to get a sore back again, and coffee recently really doesnt agree with me AT ALL,like 20 min after equals muscle twicthing in face,sore back etc...I accidentally also ate premade hamburger paddies and it litterally felt like I had a sun burn on my muscles so sore ,everywhere.Not like Fybromalaga or anything like that ,literally felt like it was on fire.Stiff neck started etc, so I stopped instantly again. So after a solid 2 weeks of no soy food etc, xmas hits.So my mom says hey I made you cinammin roles,and a piece of angel food cake with no soy in either.She used real butter,brown sugar and pretty muched followed the list of ingredients I can't have (soy,and all soy tricky named stuff like guar gum etc etc).I ate them and bam wow I felt like death.Sinuses flared,back pain is back with a vengence,neck pain ,jaw pain is back,super cold feet,nervousness back again,feel tired.Im like What???? the hell is this??? Even my BM smell like death,stomach has a lot of bloating.And again coffee=reallly bad results real quick.I always take my coffee either 2 cream 1 sugar ,or 1 cream ,1 sugar ,never black.Also yesterday I had tingling in fingers,cold feet,just felt nervous!! and last couple of days shoulders are like cement!!

My question also to the celiac croud, because I cut out soy (pretty much all breads,cereals,breakfast bars,donuts,chocolate,and a ton of other stuff) could I have also cut out enough gluten to feel better if thats the true cause? I usually eat pure fruit in the morning,eat veggies at lunch also pure no dips,and dinner I eat hamburger meat(I make and no buns),eggs,bacon,pork,chicken,more veggies and for desert i'll eat chips(Kettle chips only) that clearly state no gluten and made from safeflower/sun flower oil so no soy.I drink water only or coffee but only 1 coffee a day and that still hurts me (gluten in coffee??) Im lost folks, now I can't eat soy free baked goods ,what else could it be??? Lactose is not in baked good right? and I know gluten is in baked goods right??

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Greetings LiquidCeliac,

I think it would help to have protein with each meal along with a little fat like coconut, olive oil, or butter. You can take the dairy out of butter (ghee) if it is needed. I think that would help your body work more study throughout the day. I use a diet like that (and that is why I suggest it) and it does well for me. I would add that I am grain free as my body wasn't tolerating them either.

Eggs don't work for some people. However, they are good for me. The poached eggs cook in 5 minutes without much attention. Chicken, fish, or pork work for me also.

You will likely have your own program over time that will work for you. I hope you will feel better soon.

Diana

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Hey LC,

I have the same problem with coffee! It's brutal. I'm not technically celiac though, but I've been on a (mostly) gluten-free diet for 2 months now (lactose free for 2 years). This website says, "10% of coffee is a protein that cross reacts with gluten antibodies." (http://www.thehealthyhomeeconomist.com/gluten-issues-or-celiac-dont-drink-coffee/)

I'm not sure if that's our issue or not. I'm with you on the tight muscles. My back feels like it's constantly extremely tight, and when I drink coffee, it feels like my muscles contract within minutes/seconds and sometimes it's unbearable. I'm on 200 mg of Tramadol a day for my back pain and throat pain, and if I have coffee my back will start screaming right through the tramadol and I'll usually rub some icy-hot on it. That helps a lot, but it's no solution clearly and only last a couple hours. Today I didn't even have coffee and my back is driving me up a wall. I'm about to go to bed so I can forget about it.

Now that I'm thinking your post over, I also started working out regularly a while ago. I went hard for a solid year, but I've been mostly stopped for the past year because of my insane fatigue that I can't seem to figure out. I'm also on 30 mg of adderall/day just so I can stay awake. Before I was taking this I would literally sleep 12 hours before work, get ready for an hour, drive another hour to work, and be ready to nap. I would then chug 2 cups of coffee & down 2 aleve, my back would start screaming, so I'd use some bengay on my WHOLE back, then I'd nap my whole 1 hour lunch break. Wake up, chug more coffee, more bengay, more aleve, go home, eat dinner, then go to bed immediately to escape the pain and because of the fatigue.

Sorry this is out of order, but I have had to keep re-reading your post. I also have had a fair amount of heartburn and have since changed my diet a lot (no orange juice, tomatoes, energy drinks, tea, coffee, etc.), which has helped a lot, but I still get it more than I'd like to. I also seem to have chronically cold feet. I'm currently wearing 3 pairs of socks (one regular and 2 pairs of wool socks) and they're still freezing. Never thought of that as much of a symptom though, but now that you mention it maybe it is.

Wish I could offer you more advice, but I'm in the same position you're in. I've been dealing with this for 3.5 years (I've also had a chronic sore throat, that's my #1 symptom), and I'm losing my mind. This is the most exhausting, frustrating, painful thing ever.

Have you ever had a sore throat from this? Sorry if this was a horribly unordered ramble, it's been a long day and I don't want to re-read/edit it.

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Hey LC,

I have the same problem with coffee! It's brutal. I'm not technically celiac though, but I've been on a (mostly) gluten-free diet for 2 months now (lactose free for 2 years). This website says, "10% of coffee is a protein that cross reacts with gluten antibodies." (http://www.thehealthyhomeeconomist.com/gluten-issues-or-celiac-dont-drink-coffee/)

I'm not sure if that's our issue or not. I'm with you on the tight muscles. My back feels like it's constantly extremely tight, and when I drink coffee, it feels like my muscles contract within minutes/seconds and sometimes it's unbearable. I'm on 200 mg of Tramadol a day for my back pain and throat pain, and if I have coffee my back will start screaming right through the tramadol and I'll usually rub some icy-hot on it. That helps a lot, but it's no solution clearly and only last a couple hours. Today I didn't even have coffee and my back is driving me up a wall. I'm about to go to bed so I can forget about it.

Now that I'm thinking your post over, I also started working out regularly a while ago. I went hard for a solid year, but I've been mostly stopped for the past year because of my insane fatigue that I can't seem to figure out. I'm also on 30 mg of adderall/day just so I can stay awake. Before I was taking this I would literally sleep 12 hours before work, get ready for an hour, drive another hour to work, and be ready to nap. I would then chug 2 cups of coffee & down 2 aleve, my back would start screaming, so I'd use some bengay on my WHOLE back, then I'd nap my whole 1 hour lunch break. Wake up, chug more coffee, more bengay, more aleve, go home, eat dinner, then go to bed immediately to escape the pain and because of the fatigue.

Sorry this is out of order, but I have had to keep re-reading your post. I also have had a fair amount of heartburn and have since changed my diet a lot (no orange juice, tomatoes, energy drinks, tea, coffee, etc.), which has helped a lot, but I still get it more than I'd like to. I also seem to have chronically cold feet. I'm currently wearing 3 pairs of socks (one regular and 2 pairs of wool socks) and they're still freezing. Never thought of that as much of a symptom though, but now that you mention it maybe it is.

Wish I could offer you more advice, but I'm in the same position you're in. I've been dealing with this for 3.5 years (I've also had a chronic sore throat, that's my #1 symptom), and I'm losing my mind. This is the most exhausting, frustrating, painful thing ever.

Have you ever had a sore throat from this? Sorry if this was a horribly unordered ramble, it's been a long day and I don't want to re-read/edit it.

. I get random sore throats but not steady.Honestly I can't explain the coffee thing , I've rounded down my problems to 3 things.Celiac,caffeine allergy(doubtful) or candida infection .The candida would explain the coffee because it loves acid so the more the merrier and in return your muscle pain reactions.However the rest of my symptoms except cold feet and hands lean into celiac. Here is a good example on what has happened to me just this last Friday .I had stopped gluten for awhile ( 2weeks) but besides the crashing of energy,and Dizzyness , my muscle tension was still there.So being impatient like I am I went back to eaten gluten because I was so hungry.Friday I got home from work and ate spaghetti my favorite meal.About 1 hour after I heavily crashed!!! Like super dopper tired,weak so I went to bed.The next few days including today I felt like pure death.Shortness of breath, smelly BM, bloated, slightly constipated, tired and heart palpatations.Only today I've started feeling a bit better.I also notice I get sleepy after meals , not crashing like last Friday but sleepy.I heard this was a celiac symptom as well (not sure about super crashing though).Honestly I'm lost and starting to get depressed because I honestly feel like I'm dying .Its getting worse and worse ,seems my reactions now are way worse than before.What angers me is before the holidays I had cut out gluten for about 2-3 weeks and I almost felt 100% normal until the Xmas foods hit.I still don't know if its celiac or candida because Xmas foods are rich in sugar and could have caused the reactions to.I feel at my wits end with this
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Does This Sound Like Celiac Symptoms? To me, it sounds like the symptoms of B12 deficiency. Tingling in fingers, dizziness, tight muscles, and even gerd symptoms can be laid at the door of B12 deficiency. Of course, B12 deficiency could be the result of celiac disease, but if I were you I would get my B12 levels tested and/or start supplementing immediately. Good luck.

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Suggestion is to get tested for full blood panel that can point out the lack of vitamins defienceires.(msp?) Plus stay on gluten and go get full celiac panel test. So you can see what is happening. those symptoms sound like celiac with some of food intolerances.

so sorry for so short post. I do get very tired after my meals if it have any kind of gluten in it. So it is possible that your body are try to telling you that it does not like gluten and they just shut down as well.

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Suggestion is to get tested for full blood panel that can point out the lack of vitamins defienceires.(msp?) Plus stay on gluten and go get full celiac panel test. So you can see what is happening. those symptoms sound like celiac with some of food intolerances.

so sorry for so short post. I do get very tired after my meals if it have any kind of gluten in it. So it is possible that your body are try to telling you that it does not like gluten and they just shut down as well.

. Thanks for the info, my doc did check b12 and iron and it came back as normal.After reading a lot of this site I'm starting to wonder what my thyroid tests results. Actually were? I know my moms father and sister were both hypothyroid and also my grandmother which is still alive has vilie problems.I question if she hasn't had celiac her whole life? My mom also has chronic migraines and digestive problem her whole life.I was thinking of going with entrolab testing for gluten and food intolerence.I don't trust the tests done to me here and it was through blood not entrolab way.I just don't understand why It takes so long to feel better once off gluten like weeks .Im back off it again I can't afford &$$. To keep feeling this eating dont want to lose my job. Ill demand my thyroid test results this Friday and post them on here maybe some experienced people can check them for me.I also stopped coffee as of three days ago (caffeine really) and I'm also wondering if I'm not going through withdrawal symptoms to top it all off
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. Thanks for the info, my doc did check b12 and iron and it came back as normal.After reading a lot of this site I'm starting to wonder what my thyroid tests results. Actually were? I know my moms father and sister were both hypothyroid and also my grandmother which is still alive has vilie problems.I question if she hasn't had celiac her whole life? My mom also has chronic migraines and digestive problem her whole life.I was thinking of going with entrolab testing for gluten and food intolerence.I don't trust the tests done to me here and it was through blood not entrolab way.I just don't understand why It takes so long to feel better once off gluten like weeks .Im back off it again I can't afford &$$. To keep feeling this eating dont want to lose my job. Ill demand my thyroid test results this Friday and post them on here maybe some experienced people can check them for me.I also stopped coffee as of three days ago (caffeine really) and I'm also wondering if I'm not going through withdrawal symptoms to top it all off

What was your B12 level?. Sometimes what a doctor thinks is normal is extremely low.

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Hi LC,

If you want to know if you have celiac do get all the testing done before going gluten-free. You can do it later but you would have to eat gluten again for some period of time and that might not be fun.

Cutting out all soy is a good idea, but I suggest you also cut out all diary. At least for a few months to see if your health improves. It can be helpful to write down your symptoms each day and what food you ate that day. Sometimes it comes down to doing an elimination diet to figure out what foods are causing us to react. Basically you eat only a very limited diet of 5 foods for a week or two. Then add one new food each 3 days to a 5 days. Slowly you build up the list of foods that you can eat without reacting. There are threads on the forum about elimination diets with more info. Basically the iddea is to simplify your diet so reactions can be pinpointed to a certain food.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

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