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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.

Celiac? Left Side Abdominal Pain, Sharp Chest Pain And More >>
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45 posts in this topic

I too have the left side pain, upper and under my last rib area, sharp stabbing. I found that whenever I ate casein it was "active" no casein no pain. Strange....

Best of luck. ;)

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I'm a 24m and have been having gastrointestinal problems for about 8 years or so. I've been tested for almost everything under the sun (endoscopy, colonoscopy, barium swallow, stomach biopsy, heidelberg test etc.) and they can't find anything. Every test comes back normal and I'm so desperate to figure this out and turn my life around.

My symptoms are as follows:

- upper left side abdominal pain

- exhausted feeling all the time

- sharp chest pain at times

- shortness of breath

- bloating & gas after eating

- very deep burping

- have to eat very slowly (1-2 hrs for a normal meal)

- some constipation

- can't gain weight and never have been able to

- pale skin & ridges in finger nails

I had a stomach biopsy 4 or 5 years ago but it came back borderline and the doc said I was just gluten sensitive and diagnosed me with IBS. I've been reading a bit about latent celiac and trying to figure out if celiac might really be the culprit. I just can't seem to find anything else it might be. Last week I was tested for pernicious anemia but you guessed it, the test came back normal. I'm really skinny and look anemic but all of the levels are normal.

Thank you so much in advance for any help you can provide!

You would do best on a Paleo Diet. It is the cleanest diet for celiacs, yet the hardest. If you can do it, like I have for 4 years.... you will feel no symptoms. U will just be very hungry!! YUMMY

Check out this site from some triathlete kid who does gluten-free and Paleo Diet. www.glutenfreetriathlete.com

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I too have the left side pain, upper and under my last rib area, sharp stabbing. I found that whenever I ate casein it was "active" no casein no pain. Strange....

Best of luck. ;)

I had pain in the left side alot, until I was diagnosed by my physician and placed on the diet.

It was a truefuly painful period of my life.

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Yes, I get that pain as well. For me, it does seem to be related to the fat content of what I eat, and also happens when I get glutened. It is 2-3" to the left of my sternum, and is sharp and burning. Drives me crazy, not to mention being painful. It was constant before I went gluten free, but now comes and goes.

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I can not tell you how many hours I spent on the Internet trying to find these symptoms for the last year and a half, especially the upper left ab pain, to figure out what was causing me pain. I went to the doctor. He thought it was GERD. Gave me an OTC (prilosec) which only kind of works after taking it for days. Then I went for an ultrasound. I didn't hear anything back for 8 months. Then my doctor decided to send me to a GI doc. I hadn't had any of the symptoms for a couple of months so I thought "what's the big deal". Turns out that the ultrasound should my liver was uneven in texture. I have no idea what that means. I had more rounds of tests to make sure it wasn't hepatitis or some other liver problem. It wasn't anything detectable and my liver enzymes were fine. It's a mystery that my doctors seem willing to just sit on rather than investigate more thoroughly...great. <_<

So now I have pain and I finally narrowed it down to gluten b/c every time I eat something with gluten I get a major pain and tons of gas. I'm tired all the time. I have pain in my hips, my feet and now my knees. They cramp, ache and burn. I have constipation unless I eat a ton of veggies and fruit. Then I get diarrhea ( I hate that I can't trust my body). My female parts are behaving as if I'm menopausal (I'm 34). My lower back hurts and now I'm experiencing kidney like pain even though I drink the advised daily water amount.

I just recently went gluten free and have noticed some improvements. It's been hard trying to find out where it is hiding (my coffee creamer seems to set it off). I haven't gone back to my doctors b/c frankly I no longer trust doctors. I don't like paying literally and figuratively for their guessing games and dismissals.

I've had some kind of stomach on and off all my life but a year ago is when it took off. Two things happened at that time. One, I quit smoking (wasn't a heavy smoker but did in the evening) and two, I got really sick with some weird virus (which was suspiciously like Mono or Strep). After that is when the pain started.

I don't know my own body anymore. I'm so frustrated. :(

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Your doctor certainly didn't do you any favors. I can't write the words I want to use to describe this guy. You are celiac. Your doctor biopsied you and found that you were in the early stages. Instead of telling you to stop eating gluten and giving you a diagnosis this guy wanted you to be in the end stages of the disease before he would diagnose. I would be willing to bet he also told you that you could come back and be rebiopsied at a later date when your symptoms became worse. I bet he also gave you a handful of scripts.

You need to get on the diet, and follow it strictly. You don't 'have' IBS, IBS is not a diagnosis it is a symptom, you have celiac.

Well this IS interesting. I've tried the gluten free diet for 2 weeks 2x now and had NO luck on the pain, but these symptoms sound just like mine. I've had chronic left side pain, like a burning, gnawing and sometimes tingling under the lower and middle left side ribcage for over 3 years. It feels like it's in my stomach, or my spleen or something. I've been repeatedly tested for Pancreatitis, bacterias, parasites, gallbladder, hernia.... BUT, all tests have come back normal. I'm also not malnourished. I have had very low vitamin D levels (last one was an 8). Biopsises have come back with mild irritation to the esophagal opening of the stomach and lyphocytic colitis ( a condition little old ladies usually get after infection that can be cleared up with steroidal anti inflamatories...mine did). Recently, I've started running a mild fever of 99 to 99.5 degrees all the time with constant sweating...more than normal, and the gnawing pain has not changed. This has gone on now for several months. It gets worse after eating just as the pain always has (now coupled with sweating under the arms)...high fat vs low fat does NOT seem to make a difference...high fat will make it last longer...I imagine simply because it's taking longer for the food to pass through my system. When I lay flat on my back, the pain gets a lot better, and a long nights sleep (i.e., longer I'm away from food and rested) helps a lot.

My question IS...does this sound like what you went through...and if so...how long does it take for the gnawing to stop after one starts the diet? Mine has never gone away when I'm on the diet, but then again I've only gone 2 weeks, didn't notice improvement and gave up because I've heard you're su[pposed to notice something at leas tthe first few days or week. I've tried eliminating gluten, dairy and BOTH at the same time for up to 2 weeks. I've been tested for Celiacs over 5 times...nada. I'm only 31 and tired of feeling jeriatric all the time. My doctors don't know what to tell me. One really, really tried to diagnose me with pancreatitis, but he got the perfectly clean, normal CT back, saw I'd GAINED weight and was stumped. They keep seeing slightly elevated Amylase, a slightly low elastase level, etc...but all these things can happen with a million different diseases...including the common infection of god knows what and celiacs. He left me with the horrid IBS, ambiguity diagnosis. I give up! It feels like I have a chronic infection in my gut or mid to upper left abdomen...sometimes it crawls up my left side and around to my back, but not IN my back...more like a wierd tingly surface pain when it does that with the deep pain still in my mid left and under my ribs. it's hell. It never goes away. I feel diseased.

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My question IS...does this sound like what you went through...and if so...how long does it take for the gnawing to stop after one starts the diet? Mine has never gone away when I'm on the diet, but then again I've only gone 2 weeks, didn't notice improvement and gave up because I've heard you're su[pposed to notice something at leas tthe first few days or week. I've tried eliminating gluten, dairy and BOTH at the same time for up to 2 weeks. I've been tested for Celiacs over 5 times...nada. I'm only 31 and tired of feeling jeriatric all the time. My doctors don't know what to tell me. One really, really tried to diagnose me with pancreatitis, but he got the perfectly clean, normal CT back, saw I'd GAINED weight and was stumped. They keep seeing slightly elevated Amylase, a slightly low elastase level, etc...but all these things can happen with a million different diseases...including the common infection of god knows what and celiacs. He left me with the horrid IBS, ambiguity diagnosis. I give up! It feels like I have a chronic infection in my gut or mid to upper left abdomen...sometimes it crawls up my left side and around to my back, but not IN my back...more like a wierd tingly surface pain when it does that with the deep pain still in my mid left and under my ribs. it's hell. It never goes away. I feel diseased.

Hi Bendrixx,

I had the left side pain for many years also. It took quite a while for it to go away. It still comes back when I get glutened, along with generalized pain throughout the nether regions. Since the docs aren't getting there with tests, you can do your own testing. Go back on the Gluten-free Casein-free diet and stick with it for 3 months. If you stick with it that long there's a good chance you will experience some reduction in symptoms if it is celiac. You have to be serious about it though and not cheat, You might benefit from an elimination diet also. Many of us have intolerances to other foods besides wheat, rye and barley. An elimination diet can help you figure those out.

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I also have that left-side abdominal pain,radiating to the back just underneath the ribcage. I have not had a formal diagnosis but a gluten-free diet has eliminated the other DESPERATE symptoms. But I seem to have hit a wall on my way to recovery and I cannot figure out what I am doing wrong. I have been gluten-free for 3 months. How long should I wait for the abdominal pain to go away?

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Did you have the celiac panel blood testing done?

As far as symptoms go- I suffer from the left sided upper ab pain- just under the lower left ribs on the side. Sometimes it is a sharp pain, sometimes dull, but always there. It goes around the back and sometimes feels lower on the back also. I was dx

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I've rarely been heavily glutened in the past 20 years, but the two times I have been seriously glutened by accident, I ended up in major, severe 9 out of 10 pain in my side. This time, on the left under the ribs. Couldn't stand up, couldn't walk. Unreal pain. The first time, I went to hospital, which was rediculous. This time contemplated calling an ambulance but managed to take pain pills and wait it out. Then had 3 weeks of all the other symptoms of being glutened. Sooooooo, the million dollar question is, ARE WE CELIACS ABLE TO GET ANY HELP AT ALL OTHER THAN PAIN MEDICINE WHEN WE ARE GLUTENED??? There has to, has to, has to be something to stop the spasm or whatever it is rather than masking it with pain medicine. I know there are millions of dollars of new studies lined up, can't believe this isn't on the radar. Does someone already know the answer? I tried to ask one expert at a celiac presentation, but I didn't get any help at all...

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I have most of the same symptoms as you except for the weight issues.

My chest pain is from acid reflux. I used to feel it as a burning sensation (heartburn), but now it is more of a sharp aching pain. I had an endoscopy done Monday and they saw Barrett's esophagus (inflammation of the esophagus caused by acid erosion). I am on Prilosec and I am trying to cut out coffee, soda, alcohol, spicy foods, etc.

I also get the left sided pain. It's worse after I've been sitting a while and then stand up. Not sure what it is. I am waiting for my biopsy results to see if I'm celiac or not.

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Just a quick note to add my 2c worth to what the others have already said. The symptoms you are experiencing I have had also...sharp pain in the side, horrific (I mean HORRIFIC) trapped gas that caused belching like crazy that occasionally made me throw up. (Hate that but at least I felt better afterwards). I found the sharp chest pains to be associated with the gas issues (but it took a while). I had dizzines and all sorts of problems. Going to a gluten-free diet for the past 6 weeks has cured 70+% of my symptoms. I'm not 100% yet (took corn out of my diet and that's helped another 10-15% or so - yeah!)

You are describing your symptoms and you certainly sound like a Celiac or person with gluten intolerance. This issue goes undiagnosed for so long because it is truly "the great imitator". I had every kind of symptom under the sun and never would have guessed it was gluten. It wasn't until I saw a friend on vacation who has celiac disease this past October that it all hit me. My whole medical history came screaming back to me - low carb diets to control symptoms (diary & grain free), GI problems, vitamin deficiencies, IBS, constipation as a child, unexplainable weight gain as an adult, bloating & horrible swelling, hormonal imbalances, hungry an hour after eating, insulin resistance & blood sugar issues, fibromyalgia-like symptoms, heart palpitations, intolerance to heat, high BP, and on the list goes. I never knew that so many maladies could be caused by gluten. It's the auto-immune aspect of the disease. It can attack any part of your body.

So here I am today -- a short 6 weeks into the change in eating (and still working with finding what to eliminate) - so far dairy, corn & soy - and I feel better than I have in almost 2 years. I've lost about 15 lbs without really trying.

I say go gluten free & see if it's your trouble. Just realize that depending on how harmed your body has been, it could take a little while to heal.

FooGirlsMom

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Link Z:

You haven't mentioned what your other symptoms are and why you believe you've hit a wall, so to speak. I came at this realization about the gluten intolerance sort of roundabout. I was treating symptoms through trial & error & found certain things that worked (and just happened to be gluten-free).

Sometimes because of the auto-immune aspect of this illness it can attack different part of your body. For instance, going off gluten may not immediately improve a person's insulin resistance if they have damaged the receptors on the cells. It can take time of eating a lower carbohydrate diet & allowing those receptors to heal themselves (I went through this personally) while remaining gluten free. I have to wonder how many people are treating gluten intolerance symptoms using diets like Atkins because they happen upon a way of eating that makes them feel better than they ever have in their lives, helps their bodies heal by eating zero grains, dairy or sugars, and find their insulin resistance gets better at the same time?

If you want to share your symptoms, there are lots of experienced and smart people here on the forum who can help.

FooGirlsMom

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I have the same pain. Upper left side and it's like a gnawing/raw feeling that comes after I eat and just sometimes on it's own. It can be constant and also have moment of being so sharp I feel dizzy and almost lose my sense of equilibrium from it. I am on a gluten-free diet, unconfirmed Celiac but I refuse to eat Gluten anyway because I feel like crap if I do. My doctors think it's gas. I don't have any problems going to the bathroom I just have a lot of burping a little while after I have the pain. I don't eat super fatty foods and the pain comes no matter what I eat, salad, protein, veggies etc. It doesn't wrap around to my back but stays localized in the upper left quadrant of my stomach, right under my rib cage. Enzymes help. I don't always have the pain but I can't figure out why I sometimes do. I'm extremely careful with my diet and unless I'm unknowingly poisoning myself with Gluten I have no idea what is causing it and how to make it go away. It's very uncomfortable when it happens. Anybody figure out how to make it go away?

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I have this upper left quadrant pain as well; this is the pain that caused me to get an endoscopy & colonoscopy & CT scan to see what was going on. None of them showed a thing, except for visible scalloping in the intestine, which upon further review, turned out to be Celiac Sprue.

The pain that I have is worse when driving, sitting for long periods of time, eating fatty foods and eating in general (but especially with fatty foods). It's odd, and I haven't been able to find anything that conclusively aggravates or helps it, despite seeing help through many different avenues.

Does anyone that has this had a follow-up biopsy to see if things are truly healed up?

Has anyone with this pain been able to overcome it, and if so how?

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I have this upper left quadrant pain as well; this is the pain that caused me to get an endoscopy & colonoscopy & CT scan to see what was going on. None of them showed a thing, except for visible scalloping in the intestine, which upon further review, turned out to be Celiac Sprue.

The pain that I have is worse when driving, sitting for long periods of time, eating fatty foods and eating in general (but especially with fatty foods). It's odd, and I haven't been able to find anything that conclusively aggravates or helps it, despite seeing help through many different avenues.

Does anyone that has this had a follow-up biopsy to see if things are truly healed up?

Has anyone with this pain been able to overcome it, and if so how?

hm, everytime I want to reply I keep quoting the person before me, sorry about that, can someone tell me how to fix that? the person's post before me just automatically shows up when I hit add reply.

ok, so I get a lot of pressure and tightness at the top of my ribs on the left. It doesn't matter if I eat or not it's there off and on and everyonce in a while, there's a sharp pain when I breathe but it's mostly intense pressure. it's not gas, it's a very different feeling from gas. anyone else have this? I read that most of you have the sharp pain but mine is more pressure.

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hm, everytime I want to reply I keep quoting the person before me, sorry about that, can someone tell me how to fix that? the person's post before me just automatically shows up when I hit add reply.

When you hit reply at the end of someones's post, it puts that post back up. If you want to not do that, go down to "Fast Reply" at the bottom.

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[*]My family physician told me there was no test for Celiac disease. She did tell me to eat a gluten-free dairy-free diet for possible IBS however. The stool and blood tests she did order came back normal. Is the ALB an accurate blood test for Celiac disease? My result was 4.1. The range on the report was 3.2 - 4.8 for normal.

[*]I have always had a lot of gas and cramping with milk and ice cream but I thought I was tolerating cheese and butter and dairy in other pre-made foods.

[*]I am going to a gastroenterologist soon for chronic diarrhea. I also have left side pain. It feels like a constant stitch in my side like I'd been running.

[*]I've also stopped taking any ibuprophen, and no longer drink anything with caffeine or alcohol. I am also avoiding beans, cabbage family vegetables and chocolate.

[*]I have been treated for hypothyroid for about 26 years and scalp psoriasis for 2 years. Since going on the gluten-free dairy-free diet my scalp is feeling better but the side pain remains. I'm still hoping the recurring diarrhea doesn't return. I have just joined this forum and would appreciate any feedback. If I can control what I have been going through with changes in my diet, I am more than willing to do it.

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My family physician told me there was no test for Celiac disease.

I would find a new doctor. :huh: Or perhaps she meant that there is no test for gluten sensitivity, which is correct.

There are the test to be ordered, but you should be on a full diet of gluten to insure accuracy:

The following are the celiac specific blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

AND WELCOME! :D

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There are tests for celiac disease. But you do need to be on a full gluten diet,not gluten lite or off gluten for a while before hand. The blood antibodies are one set of tests, but there is also the endoscopy with biopsy. The doc should take 5 or more biopsy samples during the endoscopy.. They look at them under a microscope to check for damage to the villi that line the small intestine.

Some people with celiac also have Hashimoto's' thyroiditis, which is an autoimmune thyroid condition. They have tests for those antibodies also.

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