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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.

Long Time Gluten Free Still Having Pain
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10 posts in this topic

I've been gluten free for nearly 5 years now and I'm still having a lot of trouble with pain in my lower abdomen. I freaked out really bad once, because it was in the same place as when my step-dad's appendix burst, spent 4 hours in the hospital and a very expensive MRI to have the doctors say they couldn't find any reason for it to hurt.

I try to be very careful, but am I crazy? Am I not being careful enough? Is there anything I can do to make it go away? I've gotten so use to not feeling good, do I need to just stop complaining about it?

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Hi there

Sounds like something going on still. Have a look at the newbie101 thread in the coping with section. Many of us spot places we could be getting cross contamination.

One other possibility is that you could (also??) have developed food intolerances, which many of us seem to do.

Read around and ask questions, we will do our best to help you get to the bottom of it :+

Welcome to the board!

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I agree with the above comment. I have had similar issues and am intolerant to dairy and have had difficulty getting enough fibre in my diet (until recently) since becoming gluten free - being a sufferer of IBS for 30 years. Keep a food journal to see if anything shows up there.

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Hi ArriettyPC,

 

5 years should be more than enough time to heal your gut from celiac damage.  But, as others said, there are other possible food intolerances that can cause problems also.  Some celiacs have an immune reaction to oats like they do to wheat, rye and barley.  There are  great number of other food intolerances that can cause symptoms.  Nightshades, soy, dairy, eggs, nuts, corn, the list goes on and on.  Finding out if you have any additional food intolerances is kind of a detective game for each person.  Since each of us can develop our own reactions.  A good first step would be to make 100% sure there is no gluten or cc sneaking into your diet.  After that you could try an elimination diet.  There are many threads about elimination diets on the forum.

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I did a food intolerance test and some of it concordanced  with the foods I had listed prior to the test like Kidney beans.

The test pointed out many others like peas, oats, etc.

 

 

You could talk to your doctor if he-she thinks you should be getting a colonoscopy for your abdominal pains.

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ArriettyPC- have you had your blood levels of gluten antibodies checked?  That might be a relatively quick and non-invasive way to get an inkling of whether it's gluten hiding in your diet, or something else.  5 years of being gluten-free without relief from pain doesn't sound normal, expectable or something you should accept.

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GYN issues ruled out?

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I've been gluten free for nearly 5 years now and I'm still having a lot of trouble with pain in my lower abdomen. I freaked out really bad once, because it was in the same place as when my step-dad's appendix burst, spent 4 hours in the hospital and a very expensive MRI to have the doctors say they couldn't find any reason for it to hurt.

I try to be very careful, but am I crazy? Am I not being careful enough? Is there anything I can do to make it go away? I've gotten so use to not feeling good, do I need to just stop complaining about it?

I have a strong family history of non-functioning gallbladders.  No stones (they'd show up on an MRI or Ultrasound), just lower abdominal pain (not near my gallbladder).  The pain was severe enough for me to pass out!  A HIDA scan confirmed the diagnosis and surgery cured the problem (gallbladder was infected/rotting) by then. I've read there's a strong correlation between non-functioning gallbladders, pancreatic issues and celiac disease.  

 

As other suggested, food allergies/intolerances can develop at anytime and symptoms can be immediate or delayed (up to 48 hours).  

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I haven't had my blood checked, but I think contamination might be the problem. I live with people who..."don't see the big deal" with gluten intolerance or my other food allergies. I try to be very careful, but I'm guessing I'm not being careful enough. Thank you for all the help. I feel kind of silly, I've done the food journals and all and thought I was done with it years ago. Thanks again.

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If it's cc from your house or work or someplace else besides the food product itself, journals will miss it because it's intermittent and not related to the food itself, but other things like who ate right before you in the kitchen, etc.

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