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Awaiting Blood Work And Having Severe Abdominal Pain
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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.

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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.  

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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

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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

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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.  :rolleyes:  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.

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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