Confused and undiagnosed

[Sonni]

I have chronic extreme abdominal pain. This has gone on for more than 5 years. I have been hospitalized for mainly pain control on many occasions. I've had a multitude of tests, CT Scans, Abdominal MRI, ultrasound, colonoscopy, endoscopy and of course a slew of lab tests. Everything for the most part has been negative, except my thyroid, and I am currently having labs about every 6-8 weeks to get a handle on this. So, what has happened is they are calling what I have IBS.   Thing is, I just don't believe that IBS can cause pain so severe as to wake me from sleep, and to have me in tears from it being level 9-10.  I am being treated with narcotic pain meds,  which as time goes on, helps less and less.  I am also taking probiotics, recently Amitiza, and prescription nausea medication. 

So, in desperation, I am going gluten free.  In my search of the internet, found my  way here.  I hate to ramble on, but I am so confused and so frustrated at having this un-diagnosed issue for so long. Do my symptoms sound familiar to anyone?  

 

[cyclinglady]

Yes, you could have celiac disease.   Anyone could.  Yes, you can go gluten free and we are here to help.  BUT I think you should make sure that in all that testing did they actually test for celiac disease?   Going gluten-free is hard and it is bit easier if you have a diagnosis.  

Get copies of your tests.  If your doctors just gave you a TTG IGA  screening test to test for celiac antibodies (like they do at Kaiser), then ask for a complete screening. . This is important.  I personally tested negative on the popular and cheaper screening test.  It is a good test but does not catch all celiacs.  If you have Kaiser as a provider, I know that there PCP doctors are not authorized the complete celiac panel only a GI can and they do not always order it.  

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i am sorry that you are ill.  IBS (I be stumped) from what I read should not wake you in the middle of the night.  

[GFinDC]

Hi Sonni, it could be celiac disease.  You should get your test results from the doctor and see what they have tested for already.  Celiac disease testing is best done before going gluten-free, as the tests depend on active antibodies circulating  in the bloodstream.  There are antibodie tests and also usually as followup endoscopy.

In the meantime you could go dairy free.  Many people with celiac have problems digesting diary.  It might relieve some of your symptoms  Also avoiding sugar and carbs may help.

Celiac disease antibodie 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

 

[Palvyre]

I have Celiac disease and I have this type of pain from fructose. I don't absorb it well and it ferments in my small bowel causing intense pain. Gas-X helps stop the pain episode in about 10-15 minutes. Avoiding apples and peaches (the worst offenders) and limiting fructose to 10g or less in any given sitting has stopped these episodes from occurring. Good luck. 

[Adamjandro]

Hi there,

My opinion is it's gluten!

Sounds a lot like what happened to me! I developed chronic severe pain/nausea in December 2014 that went on for 1 year. Many tests, scans scopes, all turned up negative. Celiac blood test turned up negative. When I ate something, anything, even water, my entire abdomen would bloat and I'd have severe pain/nausea. It was quite debilitating. I decided to go gluten-free for the heck of it to see if it'd help but it didn't (but I didn't know how to identify gluten! I though it was just wheat!)

After losing 99lbs and weighing a mere 131lbs when at 5'9" and used to lift weights prior to getting sick, I started getting worried for my life and went to a highly recommended doctor in Monterrey, MX and he also ran every test in the book, all of which turned up negative. HOWEVER... based on my symptoms (before eating, during eating, and after eating), the type of symptoms, symptom locations from start to finish, he was able to figure out what was happening. First of all, this doctor straight up told me that he does not believe it to be IBS because IBS doesn't cause one to lose so much weight. But the medicine he gave me was an "ibs medicine". Trimebutine. Basically what was going on was every time something triggered the digestive process, my GI tract from top to bottom (hah) would go into severe spasms causing pain, cramps, stabbing pains, gut wrenching pains, nausea.. etc. The Trimebutine GREATLY reduced these symptoms and allowed me to start eating again, albeit slowly at first. I did remain gluten-free.

Now 6 months later I've learned how to remain gluten-free (mostly) and I feel fantastic as long as I don't have gluten. Celiac blood tests are all negative, but gluten makes me sick! Brain fog/confusion/can't focus, GI spams just like I had before, awful gas cramps/smell, the craps (if I'm glutened bad enough). Looking back on it I believe I have always been sensitive/intolerant to gluten. As long as I can remember I have always bloated very badly after eating bread of having pasta.

Moral of the story, I'd seriously suggest dropping all gluten! Wheat, rye, barely, spelt... check all seasonings, drinks, everything! Heck, don't even breath the air in the bread isle (jk... but seriously I try not to lol). Now whenever I get glutened I have all the past symptoms (especially the sharp pains, brain fog, fatigue, and nausea) come back for 1-3 days beginning 4 to 8 hours after eating some form of gluten. The longer I stay away, though, the better I feel all around.

Good luck to you. I know what it's like to suffer constantly.