July 22, 2014 at 2:25 am #83180
I tested negative for celiac but my integrative medicine doctor suggested that I might have leaky gut syndrome and suggested I eliminate gluten from my diet. I eliminated gluten and my hives disappeared and my stomach pain is gone. I m glad to read your blood work and tumor markers were normal. Congrats!
LisaJuly 22, 2014 at 1:06 am #83179kvollandParticipant
Well that certainly sounds good to me. I know I have dealt with esophagitis and gastris both during all the stress of my husband’s cancer. I spent four days in the hospital sure I was having a heart attack…..just stress and inflammation. I think in your case it my be good to get a definitive answer so that you can get rid of the what-if worry. I will continue to send positive thoughts your way.
KrisVJuly 21, 2014 at 9:39 pm #83178
Sorry it took so long to post an update. During my EGD they found I had esophagitis and gastritis, which is inflammation of the esophagus and stomach. They also took out a stomach polyp and sent it off for testing. I received the results last Friday that the biopsy was negative for cancer; and also negative for the H pylori bacteria. The doctor prescribed Prilosec for the inflammation with instructions to follow-up if things don’t get any better. I’m holding on to the hope that this is all that is going on and that the meds will decrease the stomach pain. If things don’t change, I will seek additional answers. Thanks for all the support and those who have answered my e-mails and questions!
TrishJuly 3, 2014 at 2:11 am #83177
Did they run a CA 19-9 tumor marker? Also, I tested negative to gluten allergy and sensitivity and my Integrative Doctor told me to eliminate gluten because she thought I had leaky gut syndrome. I eliminated gluten and I feel better, my hives are gone and my blood work has improved. I agree with the others that second or even third opinion is in order.
LisaJune 30, 2014 at 8:13 pm #83176
All blood tests came back within normal range and I am not sensitive to gluten. Yay! Unfortunately they did not do the direct/total bilirubin but only the total. Hopefully they will come up with something with the scan on Thursday.June 30, 2014 at 4:00 pm #83175
I am awaiting the results of some blood tests (liver panel, blood count and celiac screen). My GI doc is also going to do an upper endoscopy (EGD) this Thursday morning. I think they suspect I am sensitive to gluten or have an ulcer(s).
I did receive the MRI and Hida scan reports back and the MRI agrees with the ultrasound that I had done back in May that they are hemangiomas. Everything else looks normal, including kidneys, pancreas, gallbladder (no stones, etc.) and the muscle function of the GB is normal.
I guess we will know more after they do the upper scope this Thursday. However, I will keep pressing for more tests if they don’t find anything conclusive with the blood tests or the EGD this coming Thursday!June 29, 2014 at 7:34 am #83174mbachiniModerator
My GI doc insisted that my mass was a hemangioma, told me I had nothing to worry about but that they would do a tagged red blood cell study to help diagnose. According to the results, they said it ruled out hemangioma and then sent me for biopsy…and the rest is history. So please be sure and find out what it is….MelindaJune 25, 2014 at 8:56 am #83173fntnMember
Hi Trish – If your able to get the blood tests done, make sure they include the direct bilirubin as well as the total bilirubin (not sure why some labs skip it, silly). If the itching is caused by some impeded bile flow, the ratio of the total/direct will usually increase before most other things become more obvious. Kinda like a little canary in the mine shaft deal. You don’t need to be jaundice to have enough bile back flow and bile acid in the blood to cause some itching issues.June 23, 2014 at 5:55 am #83172
I had upper right pain under my breast/rib cage area for about a year. I was told after my mammogram that is was common for larger breasted woman to have this pain. I wasn’t satisfied so the doctor did an ultrasound which showed nothing so I thought everything was fine. When pain persisted and I was becoming more fatigued, a friend/gastroenterologist suggested an ultrasound of the abdomen. The ultrasound showed a large mass but it was not till the mass was biopsied that CC was confirmed. Please don’t wait, get to a medical facility that has experience with CC and demand blood work ASAP. I am not trying to be an alarmist just want you to have the correct diagnosis.
LisaJune 22, 2014 at 3:06 pm #83171willowParticipant
I agree. An MRI with contrast or some imaging more sophisticated than an ultrasound is warranted. Also, liver panel blood work should have been done all along. Be the squeaky wheel! My sisters only symptom was pain upper right under ribcage. Never had the jaundice, itching, etc. Please let us know when diagnosis is updated. Yes, cc is rare and odds are you don’t have it but they MUST definitively rule it out… Hepatocellular carcinoma is much less rare. Get to a specialist ASAP and if you don’t think they’re looking hard enough , get another opinion at a large research hospital.
WillowJune 22, 2014 at 12:42 am #83170lainyParticipant
Trish, CC cannot be waited on. I don’t want to be an alarmist but it can get out of control and you really want to see an Oncologist as I said above with one or the other Doctor. A lot of GI’s do not know about treating nor have many heard of CC. I would ask my GP for a referral for an Oncologist who has treated CC and take copies of all your tests with you. I would not take a cautious stance until you can rule CC out. When I have been in the hospital for other things and I bring up CC which my husband had, it is surprising how many heave never heard of it. We say to that we try to remain realistically optimistic but that is after a firm diagnosis.June 22, 2014 at 12:03 am #83169
Thanks for all of the great responses. No, I haven’t had a liver panel done in a number of years. When these hemangiomas first popped up they did do them, but they always came back normal. For now, I requested copies of the recent tests so that I can see them myself. I also spoke to a friend of mine who’s a doctor and showed her the US report. She seems to think that I should take a cautious but optimistic approach based on what the US report said. Porter, thanks for the email. I will reply to you separately as I have some questions for you. I will ask them to do the liver panel, but from what I’ve read so far on this site, even those blood tests can come back normal. Plus, based on how hard it is to convey my concern to the nurse at the GI’s office, I may have to find a different doctor who will listen to me.June 21, 2014 at 11:38 pm #83168pfox2100Member
Hi Trish, I sent you an email, my post was kinda long. I was told in 2009 I had hemangioamas and had scans every six months. They watched them grow (which I have been told hemangiomas don’t even typically grow at all significantly) and eventhough everything in my body told me something else was wrong, I was told not to worry. I was diagnosed with ICC last July. I went into more detail in my email so if you have any questions please feel free to ask. Take care.
PorterJune 21, 2014 at 3:04 am #83167snowbirdMember
Trish – Have they ever done any blood tests at all? Normally a chemistry panel would include 3 different liver tests, ALT, AST and Alkaline Phosphatase. If any of these are elevated or your hemoglobin is low, you need a more thorough exam. I definitely would ask about these tests and get a 2nd opinion on the liver scans. My husband has Cholangiocarcinoma, which is the reason I am on this discussion board. However, I was diagnosed with hemangiomas earlier this year. They were not looking for this at all, but they showed up on an ultrasound done for another reason. I then had an MRI and the radiologist determined they were hemangiomas. One was 8 cm and I did have 2 smaller ones. All of my blood tests were normal except for my white count, which has been low for over 10 years. I was told that hemangiomas are very common and there was no need for a follow up. My mother also has hemangiomas. She was told to never let anyone biopsy them as she could bleed to death. I’ve never read anything like that before, but maybe it is dependent on where the hemangiomas are located. On another note…. I know that there is someone in this forum who was wrongly diagnosed with hemangiomas, which turned out to be CC so be vigilant!June 20, 2014 at 11:44 pm #83166kvollandParticipant
Tracking down something like this (where it is cc or not) can be difficult at best. I know I was positive that my husband needed to have his gallbladder out. Right upper quadrant pain, nausea at times and feeling of fullness. We date those symptoms back to 5-6 years before his diagnosis. The middle of April last year he had several really bad attacks so his PCP ordered a US and Hida scan both of which were negative. In the mean time he had a bout of what I am sure was kidney stones so we went in and found the tumor. Then it went crazy from there.
I would suggest a second opinion and I would really seek one from someone who has experience with hepatobiliary problems (specialized in liver and bile ducts). I was told that US and HIDA scan are not as helpful for cc. CT scan or an MRCP (specialized MRI) would probably be better. Push, push, push until someone says without a doubt what it is.
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