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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.

I Wonder About This Pain?
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5 posts in this topic

Hi everyone! :D This is my first time posting but I have been doing alot of reading here. I am being tested for celiac and am very confused about the symptoms. :( I am confident that my doctor ordered the test based on information I have given her over the past three years. I have had every test there is I am sure! My heart has been tested and I have had MRI and catscan to test for tumors and MS. I have alot of the symptoms that show up here on your board but one is not mentioned. My question is do any of you get pain between the shoulder blades that goes through you like a knife? I have episodes of this pain that stop me dead in my tracks. I call it white pain.....the kind that takes you over and makes you wish you could just die and get it over. :blink: I have had three children, naturally! When I have this pain I say I would rather be having a fourth child! It feels like a heart attack. My doc has checked into it and says my heart is normal and it is nothing to worry about ,but with this idea of me possibly having celiac I can't help but wonder if it could be connected. I am very confused about this disease and need some help sorting out what is caused by the food I eat and what is not related. I do get very dizzy and lose some of the feeling on my right side when I am not careful with my diet. I get horrible abdominal pain an feel soooo tired I cannot walk very far, I also have been suffering terrible migraines. I am sorry this is so long, I really have come to a point of total desperation.

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I'm not sure if your mystery pain is food-related or not. Are you keeping a food diary? If you write down everything you ingest and the timing of your symptoms, you might notice a pattern.

I doubt this is the same sort of pain that you have, but I have had a "mystery pain," too. I started experiencing it before I got pregnant with my first child, and I remember it being especially frequent during my second pregnancy, but I haven't had it in quite a while now. It was a throbbing pain that "blossomed" from the area right below my shoulder blades, just to the left side of my spine. It was intense, and my heart would pound and I would breathe heavily while it lasted (maybe 30 seconds?). I remember worrying that I had an aneurysm! Now I wonder if it might have originated in my stomach, instead. I'll probably never know!

Where exactly are you in the testing process? Do let us know when you have your results! Good luck!

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I just had this happen last week. It's got to be a weird coincidence, though. I was carrying a heavy object over my head at the time. All of a sudden, I had a stabbing pain in my back, right between the shoulder blades. It never went away though. I've had back pain ever since, for about a week. I have to think it's a muscle pull, not related to celiac, but you never know.

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I get this pain too. When I had my endoscopy they found a hiatal hernia and ulcers on my esophogus from reflux which is causing my pain. I also get some pain when swallowing at times, like the food is getting stuck (which it is).

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Just wondering... did your doctor check your gallbladder? I've heard that pain in your shoulder area can happen when you have stones, debilitating abdominal pains accompany.

Good luck in finding your answers.. hope you feel better soon!

Gretchen

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    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
    • Recovery diet, nutrition, leaky gut?
      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
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