Awaiting Blood Work And Having Severe Abdominal Pain

[cwb66]

This is my first post.  Just joined.  I've had a biopsy and it showed an inflamed small intestine.  I'm severely anemic, have malabsorption issues, I've lost 40 lbs over the last few months without trying, I have no appetitite (it actually hurts to eat sometimes), I've had IBS most of my life, I also have chronic migraines.  Everything seems to fit with celiac.   My GI doctor didn't even mention Celiac to me; he just told me to stop using NSAIDs, which I never take, because they tear up my stomach.  So I called my primary care, and she scheduled blood work for celiac (three serum antibody tests) and a food panel test.  I'm waiting for those to come back.  Since then, I've had "meals" where I don't eat gluten and I don't have pain.  When i eat the least bit of anything with gluten, severe pain.  I'm convinced that it's Celiac or gluten sensitivity, but I'm almost scared that the test will be negative, and then I'll be back to not knowing what's wrong with me.

 

My question is this, though.  Has anyone experienced the inflamed small intestine and had the severe pain associated with it?  what did you do for it?  When I have a severe attack, I am sore for several days.  I don't know what to do or if there is anything that anyone can do to help.  I'm ready to go to the ER.

[sisterlynr]

I always ask for a copy of my reports for labs, biopsies or any other medical test.  You could call your GI and ask for the report or ask if the villi were damaged per the biopsy. I've had inflammation and was told to follow a bland diet.  Bananas, rice, applesauce and toast.  I've also been given medication to slow down the processing of food.  My labs came back negative for Celiac but 3 doctors have given me the dx due to positive reaction to eating gluten-free and with DH, responding to medication.  

 

I would suggest you call your GI and express your concerns.  

[nvsmom]

Welcome to the board.

 

I tended to get a lot of stomach pain when i ate gluten too - the kind that makes you break out in a cold sweat, but i never had the biopsy done so I'm not sure what my intestines looked while that was happening... It does sound like you have celiac disease or non-celiac gluten intolerance (NCGI).

 

You said you are worried that the test will be negative because you'll be back to not knowing what's wrong... I think you have figured it out - gluten containing foods make you hurt. You have some sort of gluten sensitivity by the sounds of it, it's just a matter of figuring where you are on the sensitivity spectrum.  Either way, I would go gluten-free when you are done testing, and give it a few months for diet to show you any health improvements.

 

If you like, bring your tests to the board when you get your results - there are many around here who can help you interpret them. 

Best wishes

[cwb66]

First off, I have been off gluten for three days and finally had not stomach pain today.  I actually chose to eat something instead of making myself eat something.  And I haven't felt sick at all.  Then I get home and in the mail are my blood results: negative to celiac and neative to food panel.  It makes no sense to me.  Why else would I have an inflamed small intestestine, be malabsorptive, anemic, have all the symptoms of celiac??? So here are my results:

 

Deamidated Gliadin Abs, IgA    4

Deamidated Glidadin Abs, IgG  2

t-Transglutaminase (tTg) IgA <2

t-Transglutaminase (tTG) IgG <2

Endomysial Antibody IgA Negative

Immunogloblin A, QN, serum  186 mg/ dL  reference interval 91 - 414

 

Basic food profile , all were < .08 kU/L

 

ige Milk

ige wheat

ige corn

ige peanut

ige soybean

ige pork

ige beef

ige fish/shell

ige egg/whole

ige chocolate/cocoa

Welcome to the board.

 

I tended to get a lot of stomach pain when i ate gluten too - the kind that makes you break out in a cold sweat, but i never had the biopsy done so I'm not sure what my intestines looked while that was happening... It does sound like you have celiac disease or non-celiac gluten intolerance (NCGI).

 

You said you are worried that the test will be negative because you'll be back to not knowing what's wrong... I think you have figured it out - gluten containing foods make you hurt. You have some sort of gluten sensitivity by the sounds of it, it's just a matter of figuring where you are on the sensitivity spectrum.  Either way, I would go gluten-free when you are done testing, and give it a few months for diet to show you any health improvements.

 

If you like, bring your tests to the board when you get your results - there are many around here who can help you interpret them. 

Best wishes

[Takala]

Not everybody gets the test results that reflect the reality of what happens after they ingest what is bothering them. 

 

You could be non celiac gluten intolerant.  It's like celiac, only you don't get the diagnosis.   Just the recipes.   If you stop eating gluten, get on some gluten free vitamins and minerals, winnow out any other food intolerance problems (allergy tests.... accurate....   hah hah ha ! try just not eating something and see what happens, such as avoiding soy flours/protein and dairy for awhile with the gluten) and this stops your stomach hurting and your migraines and such, then you have your answer.