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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.

Overwhelmed by This Possibility
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57 posts in this topic

Hello, I'm brand new here... and while I'm being worked up for any possibility of a digestive problem, was wondering how likely I am to be in a gluten free boat for the rest of my life.

To start, I'm a 33 year old gal, and my health has been declining steadily for 2 years. I eat a regular diet, and for the past 2 years I've been plagued by a major loss of appetite (and feeling full after eating just a little bit of food). It started while I was on a trip, and at first I thought it was just because I was traveling, but it never came back and kept getting worse. For reference, I used to be able to pack away 3 giant slices of pizza in a single sitting, and now I can hardly finish a baked potato. I've lost 40 lbs on accident. I also started having severe upper back pain just a few months before that loss of appetite started, and there is no good cause for the pain on diagnostic images.

Other symptoms include: Severe fatigue, burning in the upper abdomen (cutting all the way through the front to the back like a poker), pretty severe constipation, bloating/gas, itching all over my body (that started about 4 years ago), tooth decay despite good tooth care, heartburn, frequent nausea, headaches, and a general sense of feeling crappy all the time. I've gotten so used to it, I can't imagine not feeling this crappy ever again. They checked my pancreatic enzymes and thyroid, and those blood tests were normal. The amount of calcium in my blood is low, and I've been anemic for years without knowing why.

My previous doctor didn't really check well into any of this, but I did have MRIs and X-rays for the back pain. Other than mild scoliosis and mild disc degeneration, there was nothing to explain the upper back pain. There were enlarged retroperitoneal lymph nodes on one MRI, but a follow-up CT scan showed lymph nodes back to normal sizes. All I can say is the pain is DEEP, burning/gnawing, and severe. Every day. It seems to get worse as the day goes on, but sometimes (more often lately) I wake up with it.

My new doctor, who I just saw one week ago, was very displeased with what the old one had neglected, and now I'm waiting to see a GI doctor that I was referred to. The new doctor told me the weight loss, early feeling of being full and loss of appetite smacks of malabsorption (40 lbs lost without trying) and I will need a scope to look down (and probably also up), no matter what. So a scope is coming. In my head is swirling fears of cancer, etc. But he also hypothesized "celiac" at me, which I had never even considered.

Let me tell you something. My favorite food on earth is, and has always been, macaroni and cheese. Followed by spaghetti, and pizza, and Italian bread, and sourdough bread, and pretty much every gluten on earth. I have been reading the internet for days to inspect what could be my fate, and I'm ruined by the idea of this. If anyone can tell me if my symptoms sound familiar, or perhaps not celiac-like, while I await diagnosis from a proper GI doctor, it would be comforting.

Thanks for reading my really long post. :P

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1 hour ago, GalaxyDuster said:

Let me tell you something. My favorite food on earth is, and has always been, macaroni and cheese. Followed by spaghetti, and pizza, and Italian bread, and sourdough bread, and pretty much every gluten on earth. I have been reading the internet for days to inspect what could be my fate, and I'm ruined by the idea of this. If anyone can tell me if my symptoms sound familiar, or perhaps not celiac-like, while I await diagnosis from a proper GI doctor, it would be comforting.

If it helps at all Barilla makes a great gluten-free spaghetti. Etalia, Schar and Udi's make pretty good pizza crust, so you can make your own pizza. In the frozen section California Pizza Kitchen I think makes a gluten-free pizza. Etalia makes a nice artisan style bread. Schar makes baguettes. Canyon Bakehouse makes fantastic bagels. So you won't be totally lost if if the bad news comes.

Continue to eat gluten until all Celiac testing is done.

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Sounds like celiac, need to wait for the testing to be sure.

While we do suggest a whole foods diet for the first few months to jumpstart healing there is a huge list of gluten free options for most of your gluten staples even a gluten free hot pocket lol. I will give you a link to gluten-free food alternative list. Think of it has just changing brands makes it much easier.

Right now go ahead and pig out on gluten til your testing is done you need to be eating it while they run the test for the damage to show up as backwards and messed up as that is lol. Have to be eating it for 12 weeks for the blood test and 2 weeks for the endoscope at least. -_- I have a food bucket list for when I know I am going to die of cancer or end up in a accident and am going to die for people to bring me >.< AND it is all forbidden foods. Anyway here is a nice list, I also have recipes for stuff like gluten free cheesy garlic bread (Stuffs better then olive gardens) and have found how to make my own pizza crust that has cheese IN THE DOUGH so it is so soft moist and godly you have to eat it with a fork. You can buy from all kinds of companies, I need to go make of list of pizza companies lol  anyway end of this is a HUGE list of companies that make your gluten-free staples, where to buy gluten-free foods online and how to get them ordered into your store. BROWSE them all and let your fears melt away.

 

https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

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2 hours ago, GalaxyDuster said:

Let me tell you something. My favorite food on earth is, and has always been, macaroni and cheese. Followed by spaghetti, and pizza, and Italian bread, and sourdough bread, and pretty much every gluten on earth. I have been reading the internet for days to inspect what could be my fate, and I'm ruined by the idea of this. If anyone can tell me if my symptoms sound familiar, or perhaps not celiac-like, while I await diagnosis from a proper GI doctor, it would be comforting.

I hear you. I love all of those too, maybe bar the cheese. There's even a school of thought that those who are most affected by gluten are also the ones who love it most, because of it's ability to mimic opiod receptors.  But there's good news. There is gluten free pasta, and it's good. There's gluten free bread and pizza and, in time, it tastes pretty good too :P

None of us here can diagnose you but your symptoms look very familiar. I certainly had many of them from the back pain to the swollen lymph nodes. In fact there are literally hundreds of ways gluten can mess with you. There's some links and info in this thread (scroll past my waffle): 

However daunting or restrictive the diet may sound, if gluten is your problem you will have the best incentive imaginable for cracking it:

2 hours ago, GalaxyDuster said:

otten so used to it, I can't imagine not feeling this crappy ever again.

That's why! I spent years and years feeling terrible and once I excluded gluten it all went. 

So, for now, eat every gluten goody you can think of. See the doctor, get the blood test and the scope and stay on gluten till they tell you that they've finished diagnosis. If you test positive for celiac then you have your answer and we will help you in the diet. If you test negative however DO GIVE THE DIET A CHANCE! You may be like me, someone who tests negative but still reacts to gluten and you don't want to miss finding that out.

Best of luck and a warm welcome, you have found a good site!

:)

 

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Thank you all for responding. I have a 2nd cousin with celiac disease (truly diagnosed) who said the diet is not as bad as I'm imagining it. I guess these days there are a lot of choices. I just love gluten so much. :( But, I'm also 116 lbs and falling, so I am very realistic that if this is what's wrong with me, I'll have to accept it. There's not much left to lose (and it would be nice to feel better). I will look through all those links and see the possibilities. And I'll let you know what the GI doctors find out.

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Posted (edited)

I'm a foodie, used to bake under a James Beard nominated pastry chef... and am 18 months post-diagnosis. I don't sugar coat things. Its worth it, but it sucks. My 8 year old foodie is about to start testing, and we just sit and cry. At home things are easy. Going out or to parties... it's hard.

You'll easily find pasta you like. Cooking it is a little trickier, but there are several brands that are really tasty. I make pasta all the time, and the whole family loves it. Bread is harder. You'll find a favorite sandwich bread, but Italian or French bread is much different. I find that Schar brand comes pretty close, though. 

I was really, really sad for a while. When you love food, giving up a big part of your diet is like a grieving process. But here's the thing, even when I was sadder than sad, I never thought of cheating. Not even once. Because I was feeling better and getting stronger every day. I'm doing better now. I didn't think I'd ever accept this reality, but I have. My life is pretty awesome. And I feel like myself for the first time in years. I have energy to run and play with my kids. Everything I've given up? It's worth it. I'm even re-learning to bake, something I didn't think I'd enjoy again.

Tonight for dinner I made frozen pizza (with a cheese and tapioca crust, it's amazing!) and home made buffalo wings. I may have enjoyed it even more than what I used to get from the local (awesome) pizza place.

it sucks. It really does. But if you have celiac, and it sounds like a solid possibility, it will all be worth it. You'll adapt and adjust, and everything will be ok.

Edited by NickiRose
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Thanks, Nicki. The more and more I have read, the more and more I'm sure that this is going to be the answer to all of my health problems.

My teeth have gotten so bad, the enamel is all worn off and the teeth have white spots and translucency around them. I've gone from 156 lbs to 116. I can't eat 1/3 of a normal meal. I have cramping and bloating and discomfort all the time. The upper back pain is unbearable, every day. I'm so wiped out. I can't believe it. I've been anemic, itchy, malnourished, and unwell for years. For God's sake, I'm 33 years old, this should be the prime of my life. I spent all this time being told it was "depression" and then "the pain could be from depression." "The loss of appetite is from the pain." No... the depression is from unrelenting pain and fatigue and discomfort!

I can't believe my old doctor didn't even suggest this to me, after all these years of such obvious signs. If this is what I have, I feel like I ought to sue her. I had never considered celiac disease, it wasn't even a passing thought. NEVER suggested. All this time, I've suffered.

And like you said, and what's very important to me, is that I want to be a great mom again. I have three daughters and a husband I love, we've been together since we were teenagers. My house is a wreck, because I work full time (and I've missed a lot of work over all these symptoms), and I'm so out of energy that I can't do almost anything else. I love to cook, it's one of my favorite things to do. I love to have my kids come into the kitchen and learn to cook. These are very important things, and for the past 2 years, I've totally declined. I still cook, but I hurt so much and I'm sooooo tired that I often just hunch over at the kitchen counter. I can't enjoy any of the things I used to love. Just going out to visit someone or shop for an hour fills me with such dread because I am so tired and I hurt so much and I just can't eat.

Thank you guys again for your suggestions. I will definitely let you know what the GI doctors find when they look at me (the old doctor never even suggested a GI doctor)!

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5 hours ago, GalaxyDuster said:

For God's sake, I'm 33 years old, this should be the prime of my life. I spent all this time being told it was "depression" and then "the pain could be from depression." "The loss of appetite is from the pain." No... the depression is from unrelenting pain and fatigue and discomfort!

I can't believe my old doctor didn't even suggest this to me, after all these years of such obvious signs. If this is what I have, I feel like I ought to sue her. I had never considered celiac disease, it wasn't even a passing thought. NEVER suggested. All this time, I've suffered.

Do not underestimate the psychological impact that this can have on you if you do wind up with a positive diagnosis, or, as I posted previously, test negative but react positively to the gluten free diet. 

Every word you wrote above could've been mine. Even after experiencing physical relief via the diet I took a long time to come to terms with the poor treatment and useless and potentially harmful medications I'd received from various doctors over the years.

There's no easy answer to the feelings that this discovery brought about other than to focus on the future and the positive. You look on that score to be doing far better than I was :) 

Best of luck. I hope in a few months I'm reading about how great you're doing! 

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While I impatiently await my GI appointment, I'm trying to talk myself out of having this. :blink:

Can any other GI diseases cause a 40 pound weight loss and fairly severe malnutrition over 2 years like this without being obvious? Like, I'm quite (*hopefully*) sure I don't have any masses or tumors.

Also, other than pretty severe diarrhea on that trip I took 2 years ago, when the symptoms started, I've been very constipated. All my life, but definitely worse in the past few years. I sometimes have to use laxatives after days of nothing moving through the system. Surprisingly, I've read that celiac disease can be marked by nothing but constipation. Traditional literature I've read (in passing, as a nurse) said diarrhea was a defining feature, but now I've read that that's not true... ie.; I thought I couldn't have celiac disease, because I thought you had to have diarrhea. That was the main reason I never considered it a possibility.

Also, my most severe symptoms, besides the weight loss and upper back pain, are very painful gas and bloating, which have been getting steadily worse over the past 6 months. Is that indicative? Can simple IBS cause this kind of weight loss and malnutrition, or some other food intolerance? Ulcers?

Also, I don't seem to notice a difference in symptoms between the foods I eat. I've always eaten a lot of gluten, every day. Bread, noodles, cereal, crackers, rolls, pizza. Should I be feeling much worse symptoms within a few hours of gluten-y foods, or could the severe damage to the intestines make it so that it doesn't matter what I put down the hatch and at what time anymore? I ate crackers and a flour-tortilla wrapped sandwich today, and I felt my usual super uncomfortable cramping and gas... 40 minutes after the crackers, 2 hours after the sandwich... but I get as much discomfort after any meal anymore, as far as I can tell. I've never paid attention til now to the actual food I put down and what follows.

I also haven't read as much about people with celiac having severe appetite loss and feeling full early. I realize that those could be symptoms of the digestive system being so damaged by anything, but it doesn't seem to be a common triggering factor that leads celiacs to the doctor. I even read celiacs are often overweight and hungry all the time? Could my loss of appetite and feeling full early kind of make celiac less likely?

Feel free to humor me during my anger and denial phase. :P

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Denial.  Yep, I have been there.  My GI suggested celiac disease during a colonoscopy consult (hey, all my friends were getting their 50+ colonoscopies and I did not want to be left out!).   My only symptom was anemia which I had all my life and was blamed on heavy periods (not really)  and Thalassemia (a genetic anemia).  I told my GI that there was no way I had celiac disease.  I had no tummy aches.   I knew the gluten free drill and I did not want any part of it. Hubby had been gluten free for 12 years!  What are the odds that I would need to be gluten free?  (Though they say after decades of marriage you start to look alike.....🤓  

But I had one positive on the celiac panel (DGP IgA), so my GI scoped me from both ends.  Afterwards, he said everything looked good.  It wasn't until he called with the pathologist's report -- Marsh Stage IIIB.  

The good news is now our house is 100% gluten free (too bad for the kid).  I do not have to ask hubby  to brush his teeth before kissing me, so it has been handy.  He tells me he has been glutened less.  I have definitely become the gluten police.  

Anyway, our kid has tested negative, so she gets her gluten fix outside of our house.  She is probably the healthiest eater of all her friends.  

Everyone here has different symptoms though some are shared.  This makes diagnosing celiac disease pretty tough.  Hang in there.  Waiting is hard, I know.   In any case, keep advocating for your health because something is wrong.  

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Funny thing growing up, first like 20 years of my life were pretty normal and gluten heavy diet. Thinking back for me around middle school I started falling behind mental wise behind the other kids just a tad slower to do things, And I started having slight constipation around this time. By Jr. High I considered going once or twice a week normal and highschool sometimes a whole week. I was always bloated, sleepy, and a bit slow. Around college it was much worse 10-12 days of constipation til I had to take super strong laxatives ......whole boxes of exllax did nothing for me at all. I thought vomiting after every other meal was normal......I mostly started just eating soups, bars, and 100oz jugs of mtn dew at this point with a shit ton of energy drinks.  About 4-5 years ago I did something stupid and sent my body into one hell of a shock after a drinking party, after that gluten started trigger mental issues....extreme anxiety, anger, mind fog, confusion. twitching, numbness. All started within a month, I thought I was diying and spent the next like 8-12 months going crazy running a bucket list thinking I was going to die soon dropping weight like crazy (70lbs) not even trying. My mother trying to help me suggested it might be celiac and on a whim I went gluten-free for a week and most the nuro symptoms calmed down I knew I had it and from there went my testing and then my gluten-free life started.   Been 3 years bunch of stories to tell but have mostly healed intestines wise, found some other issues that cropped up allergy, etc. But I am no longer going crazy, no longer cramping, and I have a bowel movement 1-2 times a day now.

Oh while your still on the gluten diet.....perhaps you should try some of my bucket list gluten foods I already told my family to bury me with one. Ever heard of a monte cristo? Chedders makes a good one normally.    A triple layered sandwich. Honey wheat bread, Ham, swiss, bread, cheddar, turkey, sometimes monterey, bread, all dipped in a pancake like batter and deep fried, served with a raspberry compote...I always ordered a side of onion rings ans a spice ranch sauce.....damn I miss that from my child hood. ...Also miss my homemade monkey bread with eggnog icing....I made it using croissants dough, making little balls with it filled with date paste, apple pie filling, or chocolate chips, dipping them in cinnamon sugar, laying in a bunt pan then topping with a mix of butter, egg nog, cinnamon, and sugar....baked it not all the way so it was like a huge dish of a bunch of the gooooy centers from like 40 cinnamon rolls just caked together in icing......   >.< I have a entire list of foods like these I told my family to bring me if I am terminal in the hospital.

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My husband jokes that most of my DNA is made out of noodles, because I eat so much. Noodles, every day. EVERY DAY!!! All three of my pregnancies were sustained on a gluten-rich diet... bagels, noodles, bagels, noodles... lol.

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30 minutes ago, GalaxyDuster said:

My husband jokes that most of my DNA is made out of noodles, because I eat so much. Noodles, every day. EVERY DAY!!! All three of my pregnancies were sustained on a gluten-rich diet... bagels, noodles, bagels, noodles... lol.

There are a bunch of really good gluten-free noodles, and canyon makes some damn good bagles I hear....I can not eat them due to issues with carbs but you sure can. Just changing brands pretty much. We do suggest avoiding processed foods for the first few months though....I think lundberg makes a rice only option.

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"Traditional literature I've read (in passing, as a nurse) said diarrhea was a defining feature, but now I've read that that's not true... ie.; I thought I couldn't have celiac disease, because I thought you had to have diarrhea. That was the main reason I never considered it a possibility."

That's why some of us were diagnosed IBS amongst other things for decades .

Some alternative/non western see IBS as a catch all term since they can't clearly define you. Others see it as celiac and other food intolerance testing is needed not to stop at IBS. 

Yes, it can be denial but please go get tested if someone is willing, ready, and able. I'd be elated if you got closure and could be on the road to healing  recovery.

Welcome , hello, and possibly see  you soon if they say IBS please consider a food diary and a trial of gluten-free after testing. Some of us are not classic old textbook cases.

Good luck

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Thanks, AWOL cast iron stomach... I'm in the denial/I don't know/I hope it's not cancer stage, as of yet. In fact, I'm kinda surprised... I went to a new primary care doctor for a second opinion, as my original doctor thought it was "ok" that I lost 40 lbs on accident in 19 months. She was convinced this was pain from "depression", and "loss of appetite" from the pain. Pain which they won't really even take care of! I was in the best state of mind I've *ever* been in when this all started almost 2 years ago. Happy, with a new bachelor's degree, a great career, a new national certification in my career, three beautiful, healthy children, and a happy marriage with my best friend. A house, for the first time in my life. Hope, happiness and prosperity. There is no psychological problem going on here. I feel great mentally. My only complaint now is the constant fatigue, fear, and discomfort.

I've been to physical therapy and chiropractic care for months (chiropractor for a year!) with no benefit. My husband said, enough is enough, and convinced me to see his doctor (a great, experienced DO). It's not normal or "ok" to lose 40 lbs on accident. I was a person who got excited about eating, loved that feeling of being hungry and stuffing my face with delicious food. Now everyone I know sees me and makes a comment about how I'm going to blow away in the wind. Everyone asks what's wrong with me, says I have to stop losing weight, etc. So many comments, with no good answer from me to explain it. I'm tired of it. I'm tired of the questions and comments. My co-workers say, "I wish I had your problem." And I'm like, "No, you don't. I don't know why this is happening, and I'm scared." I'm afraid that people think I'm crazy, or on drugs, or anorexic, or whatever.

And I got a referral to GI the very first visit with the new doc. He said it smacked of celiac or some other malabsorbption ... so now I'm in limbo. But at least we're going somewhere now. I feel like there could be light at the end of the tunnel. At the same time, I'm afraid they're going to look down the hatch and find nothing, because it's been 2 years of them scanning and x-raying and seeing nothing. I'm starting to feel even like maybe *I AM* crazy!

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15 hours ago, GalaxyDuster said:

Also, my most severe symptoms, besides the weight loss and upper back pain, are very painful gas and bloating, which have been getting steadily worse over the past 6 months. Is that indicative? Can simple IBS cause this kind of weight loss and malnutrition, or some other food intolerance? Ulcers?

Hi Galaxy and welcome!

Although my worst symptom at diagnosis was D, I can completely identify with the painful gas and bloating.  I remember being so painfully bloated that it felt like there was a giant lead balloon inside of me.  I was so uncomfortable all the time.   I can still remember getting to the point of only wearing sweats because I couldn't stand the feeling of anything against my bloated abdominal area.  Ugh!  

Your old Dr was an idiot!  People do not accidentally lose 40 pounds for no reason at all.  I'm sorry that you've had to deal with that.  It's great that your new Dr has referred you to a GI.  While you wait for that appointment, would he be willing to get the ball rolling by ordering a celiac panel for you?  Any Dr can do that.  That would include: IgA, TTG-IgA, TTG-IgG, DPG-IgA, DPG-IgG and EMA.  

I'm so sorry that you are going through this misery!  Do keep eating gluten until all testing is complete!  Do keep advocating for yourself...you know that something isn't right!  Keep asking questions...this board has been an amazing resource for me 😁😁.   

Big ((((hugs))))

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Hello!!! Im wondering if you have ever had your gallbladder looked at? Although I have celiacs I had very similar symptoms when I had gallbladder disease. I had the same back pain too and lost 50 lbs without trying. Turns out my gallbladder was stuffed with 30 gallstones. 

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On ‎4‎/‎16‎/‎2017 at 10:07 AM, GalaxyDuster said:

For God's sake, I'm 33 years old, this should be the prime of my life. I spent all this time being told it was "depression" and then "the pain could be from depression." "The loss of appetite is from the pain." No... the depression is from unrelenting pain and fatigue and discomfort!

I can't believe my old doctor didn't even suggest this to me, after all these years of such obvious signs. If this is what I have, I feel like I ought to sue her. I had never considered celiac disease, it wasn't even a passing thought. NEVER suggested. All this time, I've suffered.

I am so with there.  I was 29 when everything hit the fan with me.  It was hard at times to adjust.  Especially when you get those cravings for something that is totally off limits with gluten.  For me, it was more with donuts.  There is a gluten free bakery about 2 hours away from where I live, and I get donuts from there when I can.  Just thankful it's 2 hours away, it makes it a treat. :)

When you start the gluten free, it will take time for your body to reach a new "normal".  I am almost 18 mos. into the diet, and now feeling as if I have my life back.  You will have the highs and the lows, but remember your body is healing.  Drink lost of water and get as much rest as your body is asking for.  Also plenty of protein may help the healing process.  The protein we eat helps with building blocks our body needs to continue running.  Something I have started is to keep journal.  It has helped especially during the times when I didn't feel like anything was improving.  It helped keep me on track and not get discouraged because it helped me see the actual progress my body making as it healed. Write about the good and the bad days.  When you have a lot of emotions or thoughts running through your head, it helps during these times too.  Good luck, and I will be praying for you.

Also, it helps to talk to somebody too.  Be it a family member or a close friend.

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Hey Galaxy,

Oh boy! Let's see..... I laid in a closed MRI machine (& I have severe claustrophobia) for 3 solid hours so they could do all 3 parts of my spine in one appointment. The only break I got was when they pulled me out once so they could recalibrate the machine. I was allowed to sit up & that's all. I got to sit there for all of about 3 minutes & then back in again. Know what they found? Not a lot. Piddling stuff. What took me to the MRI? Unrelenting pain that claws at you 24/7. It felt like toothy battery charger clamps were clamped onto my upper spine from between my shoulder blades all the way to the base of my skull, my lower spine felt like hot coals constantly, the middle part of my spine felt horrid all the time. Besides that, I would have joint & bone pain (not at joints) that was so horrid I couldn't spare the energy to cry or scream. Opioid pain killers didn't even phase it. Nothing helped the tiniest bit. The only relief I could get at all was to use ice packs until I was absolutely numb. You're not supposed to keep ice on for long periods but I did. I didn't care what damage it might do me, I would keep the ice on for 2 hours. The pain would get so intense that I literally could not move or sit or lift my arms or use my hands. A kleenex gently brushing across my hand would send me through the roof. I was sure that within 6 months I would be in a wheelchair for life. I just knew I had cancer eating me alive. Nope, it was celiac. So yeh, all that can be caused by celiac. For the first time since I was a teen (I'm 60 now) I have ZERO pain in my spine. ZERO!!!! Gluten free for 5 years now. No migraines which I had had since I was about 25. Bloating? OMG!!!!:blink: I looked like I was 14 months pregnant. There were times I really thought my abdomen would just pop & burst all over just like a balloon pops when you blow it too full of air. I used to imagine how little bits of me would be splattered all over the walls. Gas --- I should have had stock in GasX. Gas pain like lightning coursing through you. No diarrhea, no constipation. Nausea yes. Dizzy/vertigo absolutely. Brain fog. 

There are some 300 symptoms associated with celiac disease. It can affect every cell in your body. 50% of diagnosed celiacs did NOT present with any GI issues.

I agree with icelandgirl about getting your doc to get the ball rolling by ordering a celiac panel for you.  Any Dr can do that.  That would include: IgA, TTG-IgA, TTG-IgG, DPG-IgA, DPG-IgG and EMA.  

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Squirmingitch - Woah!!!! Thanks for sharing that story with me... I'm so sorry you had to go through all that suffering and trauma. :( I guess that goes to show that all my weird symptoms could truly be from this. I'm glad that you feel so much better now! I also have a question for you - did you notice that the pain in your back ever seemed to intensify after eating (eating anything, not just gluten)? I've been paying close attention to my symptoms this week so I can describe them to the GI doctor properly, and I definitely feel that my upper back pain gets much worse after filling my stomach in general. Lately, I get nauseous every time I put beyond a certain amount of food in my stomach, too. Sometimes the cloud of pain, sudden fatigue and nausea makes me have to lay down after a meal. The amount of food I put in seems to be the biggest driving problem behind how bad those symptoms get.

Kathleen - I've never had anything looked at by a GI doctor, yet. Isn't it amazing how the digestive system can throw pain all over?

Icelandgirl - that's a great idea, thanks! I'm going crazy waiting to hear from the GI people. They must have a long wait time? I feel like I can't wait anymore. I want my answers, and suffering to end... now!

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Hi Galaxy,

GI offices tend to be busy and sometimes have long wait times.  I would not wait to hear from them, I'd call and say, "I've been referred to your office by Dr X and would like to get an appointment scheduled."  

Once you get the appointment, it could be weeks out, sometimes months (hoping that's not the case!).  I've been at a point of desperation with appointments that are far out where I do the following: call and say, "I've got an appointment with Dr X on July 2nd, and am wondering if he has any earlier cancellations?  Oh, June 15th.  Great.  I'll take it."  Then I do that again every few days.  I have successfully gone from having an appointment 8 weeks out to 3 and to be honest, that helped me so much emotionally.  

Hang in there... I'm so sorry that you're feeling so bad.  Let us know how you do getting the bloodwork ordered and GI set up!

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Galaxy, No I didn't notice any difference in the pain with eating, not how much or what I ate. As far as the joint & bone pain beyond my back..... it would move around my body with no rhyme or reason. One day it would be a hand or both hands, that might last1/2 day or 4 or 5 days, meanwhile that might be joined by my right knee. Then everything might just clear up completely & I would be good for a few days....or not...often I would get free of the joint/bone pain & a couple hours later it would strike say my shoulders or hips or one of each. For a long time my hubs & I tried to associate it with some action that I had done. My hubs would remark that I had carried that package so that must be it or I had run while playing with the dog but these things turned out to have nothing at all to do with when & where it struck. With the joint/bone stuff it would start out hurting & getting stiff & from there it would just rage out of control & only when it had reached it's peak of pain, that area would begin swelling -- no redness to the skin but I would not be able to move that hand or shoulder or knee or whatever. Places would swell greatly & only when the swelling went down say 50% would the skin turn red. Weirdest thing I've ever had happen to me.

I had no clue any of this was connected to food other than every time I ate oatmeal or cream of wheat or strawberry shortcake (all BIG favorites of mine!) I would get super bad bloat but there were times I didn't eat those things & got super bad bloat anyway.

Once again I agree with icelandgirl on calling the GI's office. Don't sit & wait for them to call you. There are people on this board who have even called every single day asking if there were any cancellations so they could take the appointment. It works if you persist and it's worth it to persist.

Malabsorption is what causes all the problems Galaxy. Malabsorption turns essentially into malnutrition. Our bodies get starved of nutrients they need to function properly. That can affect any part of the body. No nutrients or few nutrients means some part or parts don't get the vitamins & minerals it needs.

I had a whole lot more symptoms than the ones I detailed but I was just hitting on the ones you had asked about. Who knew they were all related though? I certainly didn't! 

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On 4/18/2017 at 3:21 AM, GalaxyDuster said:

I feel like there could be light at the end of the tunnel. At the same time, I'm afraid they're going to look down the hatch and find nothing, because it's been 2 years of them scanning and x-raying and seeing nothing. I'm starting to feel even like maybe *I AM* crazy!

If that does happen you can, and in my opinion, based on what you've written here, indeed should, go ahead and give the gluten free diet a thorough try. I was sure my endoscopy would confirm celiac but it didn't. By then however the gluten challenge had convinced me that I should never eat gluten again and the consultant said as much when he told me the results.

Maybe in the future there will be better tests or breakthrough's understanding this condition but for now, not everyone who has a problem with gluten will show up on the blood tests or the scope, so do bear that in mind if you get a negative once testing is complete. You may still be better off without gluten!

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Op, I'm going to go against the grain in this thread and suggest you stop eating gluten now, today. You are in horrible shape. I mean like really wrecking your body. Your digestive system is so messed up it doesn't know what to do with it self. That is why you don't react to individual foods or meals, you are reacting to everything. Likely the intestinal wall is completely destroyed so whatever you eat is going right through it whether it is gluten or not.  It will take you years to straighten this out. If it is gluten, stop poisoning yourself.

Lead pain chips are sweet. But we all know ingesting lead is not good for us. We don't go around sucking on the chips because we like the taste of sweet. Antifreeze is sweet, syrupy and similar to soda, juice and other sugary beverages. But do we suck down a cup at every meal just because it tastes good? Nope. And this is the way you will come to regard gluten once your body starts to straighten out. Your mind starts to think of it as poison. At least if you have a mentally healthy mind that is what it does. If there are other issues going on then you can go the way of people who intentionally hurt themselves to self sooth, get attention etc. But it sounds like you have strong motivators to be healthy for your kids. 

Once you get in the proper mindset gluten=poison then the diet is super easy. When you look at an item practice seeing a little skull and cross bones symbol stamped right over the top of it. The hard part will be tracking down all the sneaky sources of gluten, like your old mixer that you love that you got from mom that has gluten embedded in the nooks and crannies and it can't be gotten out and needs to be replaced.

So on to symptoms. I had all loose teeth, and a sharp pain in my chest beneath my breast bone. I went to the emergency room for the sharp pain. I had all the heart attack tests done. Went to a holistic Dr. when they wanted to put me on acid blockers but I didn't see any test results that indicated I needed that and was diagnosed. So I never got to your horrible state of health. The difference between you and I is that you have gone years eating something that is poisoning you. But how did I get it? I had a stressful event at work and had just bought 3 boxes of Ritz wheat crackers at Costco. I mindlessly ate a ton of them, close to two whole boxes at one sitting. I have since read that stress can cause it to develop and certainly that binge of crackers could have sent it over the edge. 

When I first started eating gluten free it made no sense to me because I did not have digestive upset, bloating, cramping, diarrhea, gas or any reaction to anything I ate. As I cleaned the gluten out of my diet I started to get reactions. I went to the Dr. to complain about this and he said it was typical. When you eat gluten all the time your body is constantly inflamed and at battle with the gluten. When you stop eating it the reaction calms down. Then when you eat some again the body reacts back because it was happily healthy and now the immune system is being attacked again and it has the energy to fight back.

Since then I went through what I now know is pretty typical of a gluten free diet, developing allergies to everything I ate. I was eating too much processed gluten free stuff with all the chemicals and fake this and that. So I went back to the holistic Dr. who gave me a bunch of supplements, bad yeast fighters, good yeast replacement, digestive enzyme this and some other stuff which got rid of my new dairy intolerance, meat allergies, veggie allergies etc. So now I'm back to being able to eat all but gluten, msg, xanthan gum and all fake sweeteners. Even though xanthan gum is in almost all processed gluten free products, even that is easy to eliminate by getting products from a few companies, Simple Mills for baking mixes, crackers, & cookies and Against the Grain for pizza, breads, bagels. I also like Kinnikinnick white bread.

I remember going to my regular Dr. a few months after diagnosis and after I told him about the gluten free diet, he got a look on his face and said, isn't it really hard? I said nope, super easy. There are replacement products for everything. And that was back in 2007 and now there really are alot more replacement products that taste alot better. It sounds like your biggest challenge is changing your mindset. Start telling yourself that a gluten free diet is very easy. You can get anything you want. Don't forget to mentally stamp a skull and crossbones over everything with gluten in it. You have a choice here. You can live a hard resentful life, longing for something that will kill you (sort of like heroin or meth) or you can take good care of yourself and take the easy road by eating what is healthy for you and be at ease with it. Good luck!

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32 minutes ago, Michelle1234 said:

Lead pain chips are sweet. But we all know ingesting lead is not good for us. We don't go around sucking on the chips because we like the taste of sweet. Antifreeze is sweet, syrupy and similar to soda, juice and other sugary beverages. But do we suck down a cup at every meal just because it tastes good? Nope. And this is the way you will come to regard gluten once your body starts to straighten out. Your mind starts to think of it as poison. At least if you have a mentally healthy mind that is what it does. If there are other issues going on then you can go the way of people who intentionally hurt themselves to self sooth, get attention etc. But it sounds like you have strong motivators to be healthy for your kids. 

Once you get in the proper mindset gluten=poison then the diet is super easy. When you look at an item practice seeing a little skull and cross bones symbol stamped right over the top of it. The hard part will be tracking down all the sneaky sources of gluten, like your old mixer that you love that you got from mom that has gluten embedded in the nooks and crannies and it can't be gotten out and needs to be replaced.

I love this analogy, I have such a similar view but mine sorta had a odd side effect. I see people eating gluten now days and I think of them as some alien chugging antifreeze and eating rat poison. Sorta causes a bit of detachment and I know my disgust and that look of they are crazy shows lol.  But hey people that are highly allergic to coconut and almonds probably look at me the same way since I live off them.

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    • Cycling Lady, LMAO at IBeStumped!  So true. Yes, he is trying the band aid approach it seems.  That's probably the most frustrating thing of all.  So yesterday I get a call back from his office and they say to stop taking the Viberzi and switch back to Imodium!  I reminded them that Imodium didn't work, I had already used it 8 days with no changes.  His assistant informed me that that is all he can recommend at this time until he sees me at my next appointment which is 5/24!  I live near Chicago and I am about to make an appointment to go to the University of Chicago hospital which is the top celiac research hospital in the country.  Hopefully they can give me better answers.
    • 7Hi jen and welcome No-one can diagnose remotely via nterwe  posts but if there was such a game as celiac / gluten sensitive bingo, I would be calling 'House!' having read your account above... Lots of things fit the pattern as I'm sure your lurking has revealed.  It's a tricky condition to diagnose however so you may have a little wait before you join the coolest club in town and get your funky celiac membership card For now it's really important  that you stay on gluten. Keep eating it as accurate testing requires it. Ask your doctor to check the boxes for celiac testing alongside your liver blood tests. There should be enough in your history to get this without hassle but if they're reluctant INSIST and don't be afraid to assert your reasonable suspicion and wish to clarify and exclude. A good liver specialis will be aware of the possible links so you should be ok. If not gt second opinion. Ask for a full celiac panel as there are variety of tests. Find further info here There's a lot to take in,  but be positive, I think you are on the right track and if so, you could soon be feeling better than you ever thought possible!
    • Hello,  I am in a job that I travel every 3rd week...It gets challenging becuase many times I am doing audits of warehouses and they dont even have a cafeteria.  I usually bring gluten-free protein bars as a back up if I have to miss a meal and then eat when I get back to the hotel.  Just a suggestion because they certainly fill me up....Have a safe trip...Kelly  
    • Hello all, I'm a new member here but have lurked for a while. I'm looking for some advice regarding my medical history, possible symptoms of celiac and next steps. General info: female, low level smoker, drink alcohol, aged 32. I started having bad gastro issues when I was around 17. Since then I've consistently suffered from chronic diarrhoea, frequent discomfort in the tummy area, feelings of dehydration despite drinking at least eight glasses a day and frequent fatigue for no real reason.  In 2008/9 I visited the doctor as my diarrhoea was having an effect on my studies at the time. The doctor tested me for allergies; eggs, fish, gluten and lactose and did a "standard" blood test. Everything came back fine except my liver results, which were elevated to double (I did not the see the results for myself so can't say which enzymes etc). I was told to drink less and take Imodium. The doctor implied that perhaps I was stressed and / or anxious and, still being young plus a student who regularly went out drinking, I accepted this advice and carried on with my life.  I would here add that I am not an unusually stressed person - in fact, learning to deal with my unpredictable bowels has forced me to be quite a laid-back person!  Fast forward to 2016. I had been living with my partner for two years by this point who had noticed my bowel habits and informed me that this was definitely not normal. He encouraged me to try out a gluten free diet since I was apprehensive about visiting a doctor only to be fobbed off with Imodium again. I did the diet as strictly as a newbie can for around two months before we set off travelling. During the diet I noticed that after a couple of weeks of extreme tiredness I felt quite a lot better - I kept a food journal at the time which showed that I almost immediately had diarrhoea once after eating an ice-cream, i felt bloated and unwell after an attempt to make oat muffins (maybe i didn't cook them very well though!) and I felt bloated and had diarrhoea after eating some fish fried in flour (We made a mistake in ordering them but I didn't want to complain). My partner also reported that my mood swings (which I admit can be a little unpredictable) were much better.  Once we started travelling I gave up and ate what I was given as we were staying with friends etc much of the time. Toward the end of our trip I started to feel extremely tired, to the point of having to stay in for "rest" days, and my guts were very unhappy. I chalked it up to irregular eating patterns, too many beers and late nights in general. During the trip I also had an extreme hangover after drinking wheat beer. And, while of course I accept that any overindulgence can make you ill, I really felt that that level of hangover was quite out of the ordinary. Finally, I developed a strange lump under my armpit during this period. Now back at home, I decided to go to the doc and check out the odd lump under my armpit. The doctor was pretty confident that it was nothing to worry about cancer-wise but she ordered a battery of blood tests just to be sure. The lump is fine (good news) but the results showed elevated GGT, high-ish ALT and normal AST liver enzymes plus signs of dehydration in red bloods / higher (but not concerning) levels of white bloods. I'm scheduled to go back for another blood test to double-check liver function and discuss results - if it is again high she will send me for a ultrasound.  Does this history chime with anyone here? I know that the correct course in basic health terms is to stop drinking for some time (easily done) and stop smoking forever (easy to say...) but I cannot help but think that something else is going on here. I will discuss this with my doctor and make clear that my bowel issues have not been resolved and that the initial IBS diagnosis wasn't based on any thorough testing so to speak. In the meantime - does anyone have any advice for me in times of avenues to research or experience of similar symptoms? Gluten remains in my diet but in all other respects it could be regarded as very healthy, I think anyway... (pescatarian, plenty of fruit and veg, little to no sugar on a daily basis, not much dairy to speak of...) Thanks in advance and sorry for bending everyone's' ear about this... I guess it's just taken a long time for me to admit I might be sick and I need some help. Jen
    • Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac.  I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.
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