Just Tested, Been Suffering Almost A Year

[Ms.B]

Hi there,

I will tell you my story. In July 2008 I started having what I thought was lower abdominal pain. My stomach was also rumbling overtime. The dr started me on antibiotics for a uti even though my ua was clear. I have a history of uti's. No relieve I was hospitalized and put on IV antibiotics. I developed cdiff that was treated. Over the year I've had ct scans, ultrasounds, colonoscopy, endoscopy, hida scan, cystocopy(bladder scope). I've been to gyn, uro, two gi's. All in all I've had my kidneys, bladder, upper and lower intestines, ovaries, gall bladder, etc thoroughly looked over. I recently had a gastric emptying test and small bowel series. I went to an allergist and have no allergies according to the pinprick test.

Overall most everything is ok and I'm healthy on paper. The endoscopy showed bile gastritis, but Nexium or Carafate didn't help. The notes said there was a lake of bile in my stomach. My gall bladder hida scan showed it was functioning at approx. 51% which is actually quite well I'm told.

My symptoms are overall abdominal pain that never goes away but is worse at some times. It feel like inside of me I've literally been kicked and punched repeatedly. The pain seems to be all over but at different spots at times. Like it cycles. On the outside, when you physically touch my abdomen it is tender to the right of my navel. I have lost a lot of weight over the last few years and cannot gain anything back. When it's at it's worse I'm nauseous. I wake up in the middle of the night in pain and sick to my stomach. Often I'm nauseous first thing in the morning. I'm also tired all the time and have a lot of muscle pain.

In January I started to develop tiny blisters around my fingers. They would itch and burn under warm/hot water. Eventually they burst and clear fluid oozes out. They dry out. Crust over with hard skin, and the skin peels off with fresh skin under it. A dr said it's dyshidrotic eczema. I went to a derma and by the time I got in it was cleared up. It cycles too. It goes away and comes back a week or two later but lately not as bad. It has luckily now stayed on one finger but has affected the nail too. My nail is growing out extremely ridged and flaky. I need to get a viral and bacterial swab next time it oozes I'm told.

During my endoscopy I was biopsied for I don't know what but everything came back ok. This was in October. Today I had my new GI order bloodwork for celiac. He ordered the tissue triang IGA? and a Total Serum. I'm told it will take a week or more for results because it goes to Mayo.

That's my story in a nutshell. I've had this pain that never goes away for almost a year now. I think it's digestive related because all my other symptoms (rumbling constantly, gas, bloating, nausea). I never had skin issues before either. Sometimes it feels like bladder pain but my bladder checks out ok.

I started a gluten-free diet today since I'm done with the bloodwork. Hope I can stick to it and get some relief. This is drastically affecting my life.

Does anything sound familiar?

[ravenwoodglass]

I think your story will be familiar to many that are here. One word of caution, although you have had the bloodwork done if the bloodwork is positive they will want to do another endo specifically to look for celiac. If you are going to agree to another endo for diagnosis then you must continue to eat gluten until that test is done.

You do have the choice to just try the diet of course but being gluten free will give you negative test results even if you are celiac. There is also a risk of a false negative in blood and endo even on gluten but being gluten free before testing will ensure a false negative on the tests.

If you get another outbreak of the blisters get into your derm quickly and ask them to do a biopsy looking specifically for DH, the skin form of celiac. They would biopsy the skin next to a lesion not the lesion itself.

[Foxfire62]

Hi there,

I will tell you my story. In July 2008 I started having what I thought was lower abdominal pain. My stomach was also rumbling overtime. The dr started me on antibiotics for a uti even though my ua was clear. I have a history of uti's. No relieve I was hospitalized and put on IV antibiotics. I developed cdiff that was treated. Over the year I've had ct scans, ultrasounds, colonoscopy, endoscopy, hida scan, cystocopy(bladder scope). I've been to gyn, uro, two gi's. All in all I've had my kidneys, bladder, upper and lower intestines, ovaries, gall bladder, etc thoroughly looked over. I recently had a gastric emptying test and small bowel series. I went to an allergist and have no allergies according to the pinprick test.

Overall most everything is ok and I'm healthy on paper. The endoscopy showed bile gastritis, but Nexium or Carafate didn't help. The notes said there was a lake of bile in my stomach. My gall bladder hida scan showed it was functioning at approx. 51% which is actually quite well I'm told.

My symptoms are overall abdominal pain that never goes away but is worse at some times. It feel like inside of me I've literally been kicked and punched repeatedly. The pain seems to be all over but at different spots at times. Like it cycles. On the outside, when you physically touch my abdomen it is tender to the right of my navel. I have lost a lot of weight over the last few years and cannot gain anything back. When it's at it's worse I'm nauseous. I wake up in the middle of the night in pain and sick to my stomach. Often I'm nauseous first thing in the morning. I'm also tired all the time and have a lot of muscle pain.

In January I started to develop tiny blisters around my fingers. They would itch and burn under warm/hot water. Eventually they burst and clear fluid oozes out. They dry out. Crust over with hard skin, and the skin peels off with fresh skin under it. A dr said it's dyshidrotic eczema. I went to a derma and by the time I got in it was cleared up. It cycles too. It goes away and comes back a week or two later but lately not as bad. It has luckily now stayed on one finger but has affected the nail too. My nail is growing out extremely ridged and flaky. I need to get a viral and bacterial swab next time it oozes I'm told.

During my endoscopy I was biopsied for I don't know what but everything came back ok. This was in October. Today I had my new GI order bloodwork for celiac. He ordered the tissue triang IGA? and a Total Serum. I'm told it will take a week or more for results because it goes to Mayo.

That's my story in a nutshell. I've had this pain that never goes away for almost a year now. I think it's digestive related because all my other symptoms (rumbling constantly, gas, bloating, nausea). I never had skin issues before either. Sometimes it feels like bladder pain but my bladder checks out ok.

I started a gluten-free diet today since I'm done with the bloodwork. Hope I can stick to it and get some relief. This is drastically affecting my life.

Does anything sound familiar?

Would recommend not going on gluten-free diet quite yet. Unless your biopsy was of the duodenum and showed that your villi had no blunting, I would remain on gluten diet and get biopsy of your duodenum to rule out celiac disease. You noted that you have had CT scans as well. Did you have a CT scan of your gallbladder? If not, I would recommend. You might also want to look at pancreatic insufficiency.

Hard to say what's going on without seeing blood test or duodenum biopsy results. But if you have yet to have a CT scan of your gallbladder, I would recommend doing so. But if the pain is near your naval, could it be that you are constipated? Do you feel material near there?

Another, far less though of, possible cause is appendicitis. If the pain starts going more towards your lower right abdomen, you might want to look into that. Just a though.

[Ms.B]

I think your story will be familiar to many that are here. One word of caution, although you have had the bloodwork done if the bloodwork is positive they will want to do another endo specifically to look for celiac. If you are going to agree to another endo for diagnosis then you must continue to eat gluten until that test is done.

You do have the choice to just try the diet of course but being gluten free will give you negative test results even if you are celiac. There is also a risk of a false negative in blood and endo even on gluten but being gluten free before testing will ensure a false negative on the tests.

If you get another outbreak of the blisters get into your derm quickly and ask them to do a biopsy looking specifically for DH, the skin form of celiac. They would biopsy the skin next to a lesion not the lesion itself.

The blisters are flaring up again but they are so tiny I don't know if they will even open. Can they do a biopsy of the skin next to it even if the blisters are intact? They want to do a bacterial and viral culture too. My derm is far away so I'm seeing if a general dr can test for it. By the time I get to the derm things are cleared up.

ETA The derm just called and said to just do the viral and bacterial culture because it now stays on one finger/nail. She said if it was on my elbows they would biopsy for DH.

[Ms.B]

Would recommend not going on gluten-free diet quite yet. Unless your biopsy was of the duodenum and showed that your villi had no blunting, I would remain on gluten diet and get biopsy of your duodenum to rule out celiac disease. You noted that you have had CT scans as well. Did you have a CT scan of your gallbladder? If not, I would recommend. You might also want to look at pancreatic insufficiency.

Hard to say what's going on without seeing blood test or duodenum biopsy results. But if you have yet to have a CT scan of your gallbladder, I would recommend doing so. But if the pain is near your naval, could it be that you are constipated? Do you feel material near there?

Another, far less though of, possible cause is appendicitis. If the pain starts going more towards your lower right abdomen, you might want to look into that. Just a though.

I called the previous GI to see what exactly was biopsied. Waiting to hear back. My new GI wants me to try eliminating gluten for now. I do understand not eating it will create a negative result. I'm lost at what to do.

Yes I've had a CT scan and numerous ultrasounds of the gall bladder. No stones. I will look into pancreatic insufficiency. I don't think I'm constipated. This pain never goes away even when I was totally clear as in after the colonoscopy the pain remained. There is always a little fullness in the area to touch but I've had many tests and nothing shows up in pictures etc.

No appendix.