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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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4 posts in this topic

Sorry for the long post in advance...

 

I've been experiencing bad stomach pain for about 6 months, and other symptoms for about a year. My other symptoms include rib soreness, feverishness, nausea, fatigue/weakness, and headaches. Come to think of it, a few years ago, I had some bad bouts of stomach pain that I think was brought on by, or at least partly, by my anxiety.

 

I notice that the pain comes on/increases when my anxiety increases. Eating also can bring it on. I've kind of noticed that dairy (I was tested a few years ago for lactose intolerance, but results said I'm not) and gluten foods seem to upset me more, but they're in a lot of things, so perhaps not. More recently, in the past few months, the pain seems more often after eating than it ever has been. The pain usually happens mostly at nighttime. 

 

Back in June/July, I had the worse stomach pain I've ever had. It was a tight, crampy, achey feeling. It felt like something was wrapped very tightly around my stomach/waist/ribs. I had blood when I went to the bathroom once, and it helped a little to relieve the pain when I used the bathroom, but not much. I've been having problems with normal bowel movements, both constipation and the other. 

 

That most extreme time, it hurt to move. I felt better resting my head on my knees while I sat at the edge of the bed. It was excruciating... I went to an urgent care place the next day, it still being really bad, but slightly better. They said I could possibly have Crohn's or IBS.

 

It hasn't been that kind of painful again, thankfully, but I've been having more burning pain, rib pain, feverishness, tightness, chest pain, and trouble breathing. I've also had some pain on my lower sides.

 

I recently went to the ER because it hurt to move (I had eaten, then felt the pain on my lower sides, then stomach/rib pain, trouble breathing, dizziness, and nausea). They gave me meds to relax my muscles, took my blood, but wouldn't do an ultra sound or anything.

 

I also just saw my doctor. I mentioned that Celiac runs in my family. She told me a blood test is kind of pointless unless I really wanted to do it. She told me to go gluten free for 2 weeks, and if no results, then I have to see a GI. The earliest appointment is in January...

 

Anyway, I've been gluten free for five days, and so far, not much improvement. I thought it was working at first because I didn't have as much stomach pain, but now it's basically back to normal. After anything I eat, I feel pain. I read somewhere that some people feel way worse after eliminating it at first, and then better. 

 

Any opinions?

Thank you :)

 

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Sorry for the long post in advance...

 

I've been experiencing bad stomach pain for about 6 months, and other symptoms for about a year. My other symptoms include rib soreness, feverishness, nausea, fatigue/weakness, and headaches. Come to think of it, a few years ago, I had some bad bouts of stomach pain that I think was brought on by, or at least partly, by my anxiety.

 

I notice that the pain comes on/increases when my anxiety increases. Eating also can bring it on. I've kind of noticed that dairy (I was tested a few years ago for lactose intolerance, but results said I'm not) and gluten foods seem to upset me more, but they're in a lot of things, so perhaps not. More recently, in the past few months, the pain seems more often after eating than it ever has been. The pain usually happens mostly at nighttime. 

 

Back in June/July, I had the worse stomach pain I've ever had. It was a tight, crampy, achey feeling. It felt like something was wrapped very tightly around my stomach/waist/ribs. I had blood when I went to the bathroom once, and it helped a little to relieve the pain when I used the bathroom, but not much. I've been having problems with normal bowel movements, both constipation and the other. 

 

That most extreme time, it hurt to move. I felt better resting my head on my knees while I sat at the edge of the bed. It was excruciating... I went to an urgent care place the next day, it still being really bad, but slightly better. They said I could possibly have Crohn's or IBS.

 

It hasn't been that kind of painful again, thankfully, but I've been having more burning pain, rib pain, feverishness, tightness, chest pain, and trouble breathing. I've also had some pain on my lower sides.

 

I recently went to the ER because it hurt to move (I had eaten, then felt the pain on my lower sides, then stomach/rib pain, trouble breathing, dizziness, and nausea). They gave me meds to relax my muscles, took my blood, but wouldn't do an ultra sound or anything.

 

I also just saw my doctor. I mentioned that Celiac runs in my family. She told me a blood test is kind of pointless unless I really wanted to do it. She told me to go gluten free for 2 weeks, and if no results, then I have to see a GI. The earliest appointment is in January...

 

Anyway, I've been gluten free for five days, and so far, not much improvement. I thought it was working at first because I didn't have as much stomach pain, but now it's basically back to normal. After anything I eat, I feel pain. I read somewhere that some people feel way worse after eliminating it at first, and then better. 

 

Any opinions?

Thank you :)

Get tested!  Get an appointment with a GI.  You have to be eating gluten -- so don't stop.  There's a series of blood tests (Celiac Panel).  Search for the tests on this forum or check out the University of Chicago's celiac website for the actual tests.  It's obvious that your doctor is not celiac savvy.

 

If you have celiac disease (I can only speak for that and not an intolerance), it takes weeks, months or years to feel better.  

 

Welcome to the board!  I'm sure others will respond with excellent advice.  

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Wow, yet another doctor giving bad advice, it seems to be an epidemic! If celiac runs in your family & you are having so many possible symptoms - there is every reason to do the test (it's like a $300 blood test for godsake, not a big deal). Telling you to try eating gluten free first is wrong. If you so have celiac, it can easily take a year to start feeling better (some improvements may be obvious at first but it's not an instant solution - you may have nutrient deficiencies that need attention, etc) and also celiac and other illnesses (such as IBS or Crowns or 300 other things) often go hand in hand. You are not alone, many of us need to educate our doctors or seek new ones to be understood. Good luck, follow your instincts & question the doctor!

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I meant Chrohns not Crowns...autospell drives me nuts! PS, you may want to call the GI who will see you in Jan, tell them you have celiac in the family & just went GO - ask them to order the blood work in advance of your appointment - they may not make you wait.

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