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This Is Long - But I'm At My Wits End

bleebur

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bleebur Newbie
bleebur
Posted

Hello to all - I'm at my wits end with whatever is causing me to feel like luke-warm death.

 

In November (ironically right after my husband's gallbladder surgery) I began to feel weird pains under my left rib, they also occur on my left side and in the left side of my back - at the same time, my stools began to change - from normal to always loose and either yellow to dark green (and I can't correlate with anything I eat)

 

It's just bizarre. 

 

Now after I eat, I run to the bathroom within a few hours - and my stomach noises are insane.

 

In the past year out of the blue I developed hashimotos thyroid. I hear this relates to celiac sometimes.

 

I've always (as in my whole life) been gassy and bloaty. I also have a history of Cdiff.

 

I ran to my GI doc who did a CT scan (which shows some fat in my liver but pancreas was okay which was what I was worried about) and he also did a endoscope where he said everything looks "really irritated and inflamed" - he took some biopsies but I don't get those results until Jan 26th... they said they'd call earlier if they found anything - I was hoping the celiac biopsy would be positive since the blood tests were negative.

 

Dec 08, 2014 Immunoglobulin A 209 MG/DL 71-263   Dec 08, 2014 Tissue Transglutaminase IgA Ab 5 UNITS 0-19   Dec 08, 2014 Anti-Gliadin IgG Ab Deaminated 3 UNITS 0-19   Dec 08, 2014 Anti-Gliadin IgA Ab Deaminated 7 UNITS 0-19

 

 

My lipase is also really really low (some googling said maybe it could relate to celiac but I can't get a good measure on that.

Dec 04, 2014 Lipase 7 IU/L 15-60 L

 

I can't really correlate any of this to anything I eat - in fact, the pain is there off and on whether I eat or starve, regardless of what I eat from salad to pizza to ice.

 

Has anyone had both blood tests and biopsy come up normal and still have proven celiac disease?

I've read the forums and it seems like all of these symptoms jive with celiac but it also appears that everyone's symptoms are different and frankly, I'm getting no where with my doctor and I'm tired of being in pain - more than anything, every time the small dot of pain occurs (it's not a crampy pain but more like being poked with a hot poker) it frustrates me and sends me in to a small depression...

 

I would love ANY feedback from anyone who could shed some light on what else I can do or if the pain I'm experiencing sounds like the pain you've had.

 

Thank you! I feel really alone.

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bleebur Newbie
bleebur
Posted
  • Author

I forgot to mention that out of the blue along with this I developed acid reflux/belching - where are all these symptoms coming from!?

LorriNielsen Newbie
LorriNielsen
Posted

I would ask your GI doctor about small intestinal bacterial overgrowth.

 

 

nvsmom Community Regular
nvsmom
Posted

It could be celiac disease or non-celiac gluten sensitivity (NCGS) as your symptoms do seem to fit.  I used to get stomach aches pretty randomly too; I still do compared to most people but nothing like I did before going gluten-free.

 

It looks like all of your testing is done so you could go gluten-free at any time.  Even if the biopsy is negative, you might want to consider trying the gluten-free diet for 6 months to see how things change.  Try to give the diet many months before you judge it's effectiveness - some symptoms can take many months before they start to improve.  Keeping a food and symptom journal will help you keep track of the slower and more subtle changes.

 

Welcome to the board.  :)

MitziG Enthusiast
MitziG
Posted

Hello to all - I'm at my wits end with whatever is causing me to feel like luke-warm death.

 

In November (ironically right after my husband's gallbladder surgery) I began to feel weird pains under my left rib, they also occur on my left side and in the left side of my back - at the same time, my stools began to change - from normal to always loose and either yellow to dark green (and I can't correlate with anything I eat)

 

It's just bizarre. 

 

Now after I eat, I run to the bathroom within a few hours - and my stomach noises are insane.

 

In the past year out of the blue I developed hashimotos thyroid. I hear this relates to celiac sometimes.

 

I've always (as in my whole life) been gassy and bloaty. I also have a history of Cdiff.

 

I ran to my GI doc who did a CT scan (which shows some fat in my liver but pancreas was okay which was what I was worried about) and he also did a endoscope where he said everything looks "really irritated and inflamed" - he took some biopsies but I don't get those results until Jan 26th... they said they'd call earlier if they found anything - I was hoping the celiac biopsy would be positive since the blood tests were negative.

 

Dec 08, 2014 Immunoglobulin A 209 MG/DL 71-263   Dec 08, 2014 Tissue Transglutaminase IgA Ab 5 UNITS 0-19   Dec 08, 2014 Anti-Gliadin IgG Ab Deaminated 3 UNITS 0-19   Dec 08, 2014 Anti-Gliadin IgA Ab Deaminated 7 UNITS 0-19

 

 

My lipase is also really really low (some googling said maybe it could relate to celiac but I can't get a good measure on that.

Dec 04, 2014 Lipase 7 IU/L 15-60 L

 

I can't really correlate any of this to anything I eat - in fact, the pain is there off and on whether I eat or starve, regardless of what I eat from salad to pizza to ice.

 

Has anyone had both blood tests and biopsy come up normal and still have proven celiac disease?

I've read the forums and it seems like all of these symptoms jive with celiac but it also appears that everyone's symptoms are different and frankly, I'm getting no where with my doctor and I'm tired of being in pain - more than anything, every time the small dot of pain occurs (it's not a crampy pain but more like being poked with a hot poker) it frustrates me and sends me in to a small depression...

 

I would love ANY feedback from anyone who could shed some light on what else I can do or if the pain I'm experiencing sounds like the pain you've had.

 

Thank you! I feel really alone.

I had undiagnosed celiac for 30+ years, was horribly ill. But all but one of my blood tests came up negative, and the only positive one was positive by ONE point. That is it. Had to beg for a biopsy. The damage was so visibly bad I was diagnosed on the spot, even before the biopsy came back. GI said it was obvious I had had it for many years. So, yes. You most definitely could have it. Blood tests catch about 75% of celiacs.

MitziG Enthusiast
MitziG
Posted

I had undiagnosed celiac for 30+ years, was horribly ill. But all but one of my blood tests came up negative, and the only positive one was positive by ONE point. That is it. Had to beg for a biopsy. The damage was so visibly bad I was diagnosed on the spot, even before the biopsy came back. GI said it was obvious I had had it for many years. So, yes. You most definitely could have it. Blood tests catch about 75% of celiacs.

Left side pain is fairly common...can be from trapped gas or stool, and that can cause major pain. Can also be something more serious like diverticulitis. But your dr probably would have caught the last one.

mommida Enthusiast
mommida
Posted

Unfortunately a lot of disorders can present with these symptoms. 
Did you get any pictures of the inflammation from the endoscopy?  Or tell us what the descriptive terms of the inflammation and where noted.

 

H. Ployri. test result?

eosinophil count?

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    • knitty kitty
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      By knitty kitty · Posted

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    • trents
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    • Wheatwacked
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      By Wheatwacked · Posted

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    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
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