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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 Celiac.com's FREE weekly eNewsletter   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
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yanathin

Symptoms / Tests - Need An Opinion

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I've been struggling with GI symptoms for almost two years now. I've been to the hospital a few times because the pain gets so bad. Not a single doctor has been able to figure out the issue. My main symptoms include a very full-feeling large intestine (ALWAYS felt in the lower right side, originally thought to be appendicitis but the pain is anywhere from the appendix area to just under the rib cage), a mix of constipation and diarrhea (but mostly constipation), a loss of energy (wanting to go to bed at around 9:30 every night), and lately a very bad pain in my entire gut (the only time the pain is not in the lower right area) that starts in the middle of the night and wakes me up, most of time radiating to my back (feels like bloating or a very inflamed intestine). When I feel constipated, I still go every day, it's just that most times I don't feel the relief that I so badly need sometimes, like it didn't get everything out. There's also a LOT of intestinal movement in the lower right of my gut when I lay down at night. Lots of gurgling and sometimes I can even feel things are moving around. A lot of times this relieves a lot of pressure but sometimes it makes it worse. It's also important to note that I'm 26, 5'8" and weigh only 110lbs (I've always been thin). Another thing to note is that I constantly feel like this. Eating something in particular doesn't seem to help one way or another. I've kept a food log but it kind of turned out useless since I feel the same every day (except just getting progressively worse).

 

I'm currently waiting for my blood test results when I was tested for celiac, but previous tests have proven nothing. About two and a half years ago, before I started having these symptoms, I had an endoscopy for some other completely separate issue and a biopsy was taken at that time just to test for celiac just because I was so thin. It came back negative. If I didn't have any symptoms then, wouldn't that test still come back positive? I didn't think celiac was something that could just come out of nowhere, even if I was already biopsied.

 

I've also had a colonoscopy and the doctor found absolutely nothing wrong. Would celiac show up on a colonoscopy?

 

I've had blood work in the past (not specifically for celiac) and it comes back fine without any vitamin deficiencies.

 

I'd really appreciate some help with this, as my doctors are literally giving up at this point (it was a struggle to even get him to do a blood test for celiac). I'm assuming this celiac test will come back negative, like everything always does, but does anybody here think this could still be celiac?

Edited by yanathin

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It might be non-celiac gluten intloerance which will give you the same symptoms as celiac but supposedly not the villi damage. As a matter of fact, they say that they symptoms of NCGI can be even worse than celiac symptoms. There is no way to test for this. The only way to tell is to eliminate gluten and see if you feel better. If you decide to try gluten-free, read the Newbie 101 thread for tips on cross contamination and learning the places that gluten can hide so you will be truly gluten-free.

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Hi  yanathin,      

 

Keep eating bread-gluten till you get your Celiac blood tests results and post them here for us to comment on them.

 

You were eating gluten prior to the blood test right?

 

Can you cut out all dairy first as a test?

 

In case it helps, when I had lower right side pain it was due to a kidney stone.

It didn't make sense to me at the time but pain travels.

 

The pain could be also be Splenic flexure syndrome.

It's not in the spleen, it's the colon inflating with gas.

I have that and it can be in other areas of the colon.

 

I hope you find out what you have.

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I've had numerous x-rays and CT scans, even an ultrasound, to make sure it wasn't my appendix, and I'm sure they would have also seen a kidney stone on there as well if it existed. I've tried ruling out dairy in the past (for about two weeks) with no success. Should I have tried it longer? Everything I've read about dairy is usually instant gratification once the person removes it from their diet - I know gluten is very different than that.

 

I've never heard of splenic flexure syndrome. My colon does have an unusual amount of gas a lot of times that just doesn't seem to want to leave. I just looked it up and it says it's when gas gets trapped in the "bends" of the colon, which is EXACTLY where my issue lies, right where my colon would bend horizontally on the right (from the ascending colon). Any suggestions on how to get properly tested for this? I've tried intestinal gas preventatives in the past and none really worked - the only thing that seemed to work was a charcotab, but that made the constipation worse.

 

I really hope I figure this out soon. It's getting to the point where my colon is aching from everything it's been through the past couple years. Bending and stretching really hurts that area now.

 

EDIT: Forgot to mention that yes, I was eating gluten before the blood tests and still am until I hear the results.

Edited by yanathin

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I'm sorry you're having trouble!

I also had the lower right pressure and pain as well as movement when I would lay down at night in the past. It was so disturbing! It scared me so much. I also always felt like I still needed to go to the bathroom, despite going every morning.

If celiac or gluten intolerance is what you actually do have, I just wanted to tell you that it has stopped 100% for me now that I have been gluten free for a while!

I hope you can figure out your issues soon! Good luck,

Kristin

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I'm sorry you're having trouble!

I also had the lower right pressure and pain as well as movement when I would lay down at night in the past. It was so disturbing! It scared me so much. I also always felt like I still needed to go to the bathroom, despite going every morning.

If celiac or gluten intolerance is what you actually do have, I just wanted to tell you that it has stopped 100% for me now that I have been gluten free for a while!

I hope you can figure out your issues soon! Good luck,

Kristin

 

That is VERY encouraging news. Whenever I tell doctors exactly what you told me it seems like it's the first time they've ever heard of somebody with these symptoms. Seriously, your post has completely motivated me to make the effort to try a gluten-free diet. How long did you have symptoms for? And how long did it take before you removed gluten from your diet?

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My doctor acted the same way!

Anyways,

I had those symptoms for about two and a half months- every single day. After being 100% gluten free it only took about three weeks for those symptoms to go away completely! I was so relieved. Three weeks may seem like a while, but I'm sure since you've been sick for so long that three weeks seems like three minutes!

I really hope you start feeling better soon.

Kristin

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Yes the CT scan can see the kidney stones.

They used a CT scan when I went to the emergency dept.

A previous moronic doctor had diagnosed my kidney stone pain as being "anxiety".  :angry:

 

 

Splenic flexure syndrome: do you get it at night only?

 

I only get it at night towards the morning. I also felt it in my tranverse colon.

I don't get it everynight, and it can cause me to have insomnia.

 

It started when I was gluten free. 

I don't know the cause.

 

My PCP diagnosed me with this and the gastroenterologist I saw last week said there's no such thing - sigh. :blink:

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Yes the CT scan can see the kidney stones.

They used a CT scan when I went to the emergency dept.

A previous moronic doctor had diagnosed my kidney stone pain as being "anxiety".  :angry:

 

 

Splenic flexure syndrome: do you get it at night only?

 

I only get it at night towards the morning. I also felt it in my tranverse colon.

I don't get it everynight, and it can cause me to have insomnia.

 

It started when I was gluten free. 

I don't know the cause.

 

My PCP diagnosed me with this and the gastroenterologist I saw last week said there's no such thing - sigh. :blink:

 

The gas pains only happen at night, towards the morning. I feel it in the traverse colon as well. Getting up and walking around seems to help a bit. It started for you after you removed gluten from your diet? And have you had any luck getting rid of the problem?

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When I read your reply I thought I had written it.  :)

 

I get the pain in my left side the most often, and transverse colon and on my right side towards the pelvic crest and at night.

I often wake up with back pain despite trying several mattresses.

 

Yes it started after I was gluten free.  (sorry)

It took a while for my PCP to figure it out but the gastro doctor poo pooed it.

I was hoping a gastro doctor can take a look.but he doesn't believe in this diagnosis from my PCP.

 

I don' t have a solution for it.

I read about deep massage to unkink the colon but I wonder if a colonoscopy would fix it?

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The blood tests came back negative. I didn't get specifics, but I was tested for celiac and chron's. are there multiple blood tests for celiac? And would a gluten intolerance even show up at all? I'm still giving the gluten free diet a shot just in case the tests were wrong or an intolerance exists. The symptoms have steadily gotten worse over time and I'm getting a bit worried what it will become if I don't find the answer soon.

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