Frustrated& Confused:endoscopy & Hida Results--Now Referred For Gallbladder Removal

[Chas]

Hi all

This is my first post, but have been reading for about a week now and am so encouraged by y'alls compassion and KNOWLEDGE. It has been such a blessing to me in this extremely frustrating time.

First, I should say I have had issues my WHOLE LIFE, but things have become worse since having children.

For the past 8 weeks, I have been having a burning/stinging pain in my upper right abdomen. After about two weeks of it, it radiated to my back, causing me to be seen in Urgent Care. I was told I had GERD and a back spasm and to Google a GERD diet but they also referred me to a G.I Dr.

I researched GERD and I just do not believe I have it--but while researching, it also said, "If you have been misdiagnosed with GERD, IBS, have anemia, reflux, you may have Celiac." YES, YES, YES to all of the above! This was the second time in the past year that Celiac has crossed my mind and so at my appointment with the GI Dr., I mentioned my history and asked to be tested. He suspected an ulcer but said he would order an Endoscopy and we'd go from there. I also just had a HIDA scan with CCK on Monday.

I just got the results (which is really just a letter with the diagnosis) from my Endoscopy and the letters says: CHRONIC GASTRITIS (inflammation and irritation of the stomach) special stains for Heliobacter are negative.

It then goes on to list the possible causes for Chronic Gastritis: pernicious anemia, autoimmune disorders, and chronic bile reflux.

I called the doctor's office and spoke with the nurse, requesting blood work to determine/rule out Celiac. She said it would be a waste of money and that the endoscopy is the most accurate and based off the report, my doctor says I do NOT have Celiac. I told her I would like it anyway, just for peace of mind. Then, she calls back and tells me the doctor just reviewed my HIDA scan and it is "abnormal" so I am being referred to another doctor to discuss gallbladder removal.

I am 25 years old. I do not believe my gallbladder would just fail on me, especially given my history. I feel something ELSE is the culprit. And seeing as how my endoscopy results are "Chronic Gastritis" which can be caused by autoimmune disorder (which Celiac is) how can the doctor be so sure that I do not have Celiac? I feel like I am being written off, rushed for gallbladder removal, without knowing WHY.

The nurse is mailing me a form for blood work, so I am not all sure what they are specifically looking for but I want to be sure they do EVERYTHING. What all should I be sure they do?

I am just so confused and I want to be as informed as possible before meeting with the surgeon. Also, depending on my gallbladder functionality (I do not know what my injection percentage was)--do I HAVE to have surgery? Has anyone been here and know what I should do next?

Thank you for any advice you may have for me. I am just SAD, MAD, FRUSTRATED--it goes on and on! Ha! I am tired of crying over it and just want to be INFORMED. Seems impossible when I feel doctors do not even have answers for me.

Chas

-I have ALWAYS been underweight (can eat and eat and EAT, and not gain a thing)

-am anemic

-have skin irritations on scalp, upper arms, and recently thighs--and even flaky skin in my eyebrows

-hair always sheds like CRAZY--it's always been kind of a joke, since I have very thick hair- but now I realize: It's NOT FUNNY!

-Stomach bloating, cramping- randomly--can never pinpoint WHAT causes it

-hospitalized in 2004 for a week due to severe vomiting/diarrhea--had colonoscopy (results fine)--had no diagnosis other than "colitis"

-Random bouts of alternating constipation/diarrhea

-all of a sudden lactose intolerant in the past year--drank whole milk and was an ice cream lover my whole life--switched to soy, but it broke me out

-an overall feeling BLAH--lack of energy- have never been able to pinpoint WHY I feel this way- I sleep fine but never have the energy that I SHOULD

-Most recently Gallbladder pain---seems to be worse after eating breads/bisquits/etc.

-Have lost about 8 lbs since the gallbladder pain started

-have been diagnosed with IBS/GERD/ Acid Reflux in the last 5 years

[MsCurious]

Hi all

This is my first post, but have been reading for about a week now and am so encouraged by y'alls compassion and KNOWLEDGE. It has been such a blessing to me in this extremely frustrating time.

First, I should say I have had issues my WHOLE LIFE, but things have become worse since having children.

For the past 8 weeks, I have been having a burning/stinging pain in my upper right abdomen. After about two weeks of it, it radiated to my back, causing me to be seen in Urgent Care. I was told I had GERD and a back spasm and to Google a GERD diet but they also referred me to a G.I Dr.

I researched GERD and I just do not believe I have it--but while researching, it also said, "If you have been misdiagnosed with GERD, IBS, have anemia, reflux, you may have Celiac." YES, YES, YES to all of the above! This was the second time in the past year that Celiac has crossed my mind and so at my appointment with the GI Dr., I mentioned my history and asked to be tested. He suspected an ulcer but said he would order an Endoscopy and we'd go from there. I also just had a HIDA scan with CCK on Monday.

I just got the results (which is really just a letter with the diagnosis) from my Endoscopy and the letters says: CHRONIC GASTRITIS (inflammation and irritation of the stomach) special stains for Heliobacter are negative.

It then goes on to list the possible causes for Chronic Gastritis: pernicious anemia, autoimmune disorders, and chronic bile reflux.

I called the doctor's office and spoke with the nurse, requesting blood work to determine/rule out Celiac. She said it would be a waste of money and that the endoscopy is the most accurate and based off the report, my doctor says I do NOT have Celiac. I told her I would like it anyway, just for peace of mind. Then, she calls back and tells me the doctor just reviewed my HIDA scan and it is "abnormal" so I am being referred to another doctor to discuss gallbladder removal.

I am 25 years old. I do not believe my gallbladder would just fail on me, especially given my history. I feel something ELSE is the culprit. And seeing as how my endoscopy results are "Chronic Gastritis" which can be caused by autoimmune disorder (which Celiac is) how can the doctor be so sure that I do not have Celiac? I feel like I am being written off, rushed for gallbladder removal, without knowing WHY.

The nurse is mailing me a form for blood work, so I am not all sure what they are specifically looking for but I want to be sure they do EVERYTHING. What all should I be sure they do?

I am just so confused and I want to be as informed as possible before meeting with the surgeon. Also, depending on my gallbladder functionality (I do not know what my injection percentage was)--do I HAVE to have surgery? Has anyone been here and know what I should do next?

Thank you for any advice you may have for me. I am just SAD, MAD, FRUSTRATED--it goes on and on! Ha! I am tired of crying over it and just want to be INFORMED. Seems impossible when I feel doctors do not even have answers for me.

Chas

-I have ALWAYS been underweight (can eat and eat and EAT, and not gain a thing)

-am anemic

-have skin irritations on scalp, upper arms, and recently thighs--and even flaky skin in my eyebrows

-hair always sheds like CRAZY--it's always been kind of a joke, since I have very thick hair- but now I realize: It's NOT FUNNY!

-Stomach bloating, cramping- randomly--can never pinpoint WHAT causes it

-hospitalized in 2004 for a week due to severe vomiting/diarrhea--had colonoscopy (results fine)--had no diagnosis other than "colitis"

-Random bouts of alternating constipation/diarrhea

-all of a sudden lactose intolerant in the past year--drank whole milk and was an ice cream lover my whole life--switched to soy, but it broke me out

-an overall feeling BLAH--lack of energy- have never been able to pinpoint WHY I feel this way- I sleep fine but never have the energy that I SHOULD

-Most recently Gallbladder pain---seems to be worse after eating breads/bisquits/etc.

-Have lost about 8 lbs since the gallbladder pain started

-have been diagnosed with IBS/GERD/ Acid Reflux in the last 5 years

Wow, I'm pretty new here...still working on getting things sorted out and getting a diagnosis, but I had to toss my 2 cents in, if even just from a logical and sensible standpoint. I would NEVER let someone do surgery on me, if there was something else that could be tested for, that didn't require surgery and the symptoms all were in line with it. I guess it would depend on if they have firm evidence that your gallbladder is bad and you need immediate surgery. If its something that can wait, I'd push really hard for celiac tests first.

[ravenwoodglass]

Did your doctor do biopsies to look for celiac when he did the endo? If he did try to get your hands on the results as he should have taken at least 6 from different areas. That said there can be false negatives with biopsies and also with blood tests. Since you have had the endo you can go strictly gluten free, also dropping dairy, as soon as the blood tests are drawn.

Give the diet a good strict try and see if it helps. Many of your symptoms could well be due to celiac. Gastritis and inflammation are not uncommon with celiac and having gallbladder problems is also not unheard of. If the diet helps great and being on the diet will not effect any testing for anything else.

[Chas]

Exactly, MsCurious! I am in no rush to have it removed, that's why I am pushing for blood work. I have read on here that there are a few things to specifically test for the lab work, but I do not know them and can't find where I read it. I guess that was my question: What should I be sure they test for my blood work? I want to be sure they are thorough.

Seems like you are in the same boat as me- I hope you get answers soon

[MsCurious]

Exactly, MsCurious! I am in no rush to have it removed, that's why I am pushing for blood work. I have read on here that there are a few things to specifically test for the lab work, but I do not know them and can't find where I read it. I guess that was my question: What should I be sure they test for my blood work? I want to be sure they are thorough.

Seems like you are in the same boat as me- I hope you get answers soon

Oh, I just asked the same thing! I'm sort of in your shoes... just trying to get the right tests done. Here is what two of the vet members gave me just about an hour ago. This is from a poster named Marlie:

The tests that you should ask for are:

tTG IgA

EMA IgA

AntiGlidian IgA and IgG

Deamidated Gliadin Peptide IgA and IgG is correct, according to poster Mushroom. ( NOT:Deaminated Gliadin Protein IgA and IgG)

and also the Total IGA because if you don't make enough IGA that will cause a false negative on the IGA tests

If there are other things he should be asking for, or if this isn't right... somebody, please chirp in!

[Chas]

Did your doctor do biopsies to look for celiac when he did the endo? If he did try to get your hands on the results as he should have taken at least 6 from different areas. That said there can be false negatives with biopsies and also with blood tests. Since you have had the endo you can go strictly gluten free, also dropping dairy, as soon as the blood tests are drawn.

Give the diet a good strict try and see if it helps. Many of your symptoms could well be due to celiac. Gastritis and inflammation are not uncommon with celiac and having gallbladder problems is also not unheard of. If the diet helps great and being on the diet will not effect any testing for anything else.

Hi! Yes, he said he took two biopsies. One for bacteria (which was negative) and the other which came back as "Chronic Gastritis." I will call and ask for the exact results- I only knew of my diagnosis because he MAILED (didn't even call) a letter stating the pathology results as: "Chronic Gastritis" and then it listed possible causes- one of which is an auto immune disorder. I received the phone call to say I was being referred for my gallbladder and to also tell me blood work would be a waste of my time (after I called and requested it based on Biopsy) b/c the doctor does not feel I have Celiac. But, I just feel SO MANY things are pointing to it. He also seemed very against it to begin with saying it was "trendy." WHAT?!

Is there hope that my gallbladder will settle down and 'repair' due to gluten-free diet?

[MsCurious]

Hi! Yes, he said he took two biopsies. One for bacteria (which was negative) and the other which came back as "Chronic Gastritis." I will call and ask for the exact results- I only knew of my diagnosis because he MAILED (didn't even call) a letter stating the pathology results as: "Chronic Gastritis" and then it listed possible causes- one of which is an auto immune disorder. I received the phone call to say I was being referred for my gallbladder and to also tell me blood work would be a waste of my time (after I called and requested it based on Biopsy) b/c the doctor does not feel I have Celiac. But, I just feel SO MANY things are pointing to it. He also seemed very against it to begin with saying it was "trendy." WHAT?!

Is there hope that my gallbladder will settle down and 'repair' due to gluten-free diet?

I think the biopsies Raven was referring to are 5 to 6 biopsies done of the small intestines specifically to examine for villi atrophy, which would give you a positive Celiac diagnosis. Oh, and as far as that "trendy" comment! BLEH! Its too bad that there are people out there touting the gluten-free diet because its a new cool thing to do for the "health nuts" ...when in fact there is a segment of the population who's lives and well being truly depend upon it! I'd tell that doctor, "Its NOT a trendy thing. Perhaps you're hearing more about it because there has been a mini explosion of groundbreaking research that is causing a bigger segment of the population to be aware of it and to be diagnosed properly!" SHEESH... that was so wrong of him to say that, and to dismiss your concerns!

[mushroom]

Obviously none of here are medical professions nor can we diagnose, especially over the internet. What we are telling you is based on our experience and those experiences of other posters that we have read. A common thread running through here is of people being diagnosed with gall bladder problems, having their gall bladders removed, and receiving no benefit from this procedure. They then go on to find out about the gluten intolerance. So who is to say whether their gall bladder would have gotten better by itself if they avoided gluten, and alternatively, who is to say that it wouldn't? If it were me I think I would hold off if there is no gall bladder urgency involved until you can get this whole gluten question resolved. I am not a believer in unnecessary surgery and removal of body parts, for sure. I have no idea of what a HIDA scan measures or reveals, so you have to take those results into account when making your decision. Talk to your doctor about what an "abnormal" HIDA scan actually means and its implications.

[Chas]

Oh, I just asked the same thing! I'm sort of in your shoes... just trying to get the right tests done. Here is what two of the vet members gave me just about an hour ago. This is from a poster named Marlie:

The tests that you should ask for are:

tTG IgA

EMA IgA

AntiGlidian IgA and IgG

Deamidated Gliadin Peptide IgA and IgG is correct, according to poster Mushroom. ( NOT:Deaminated Gliadin Protein IgA and IgG)

and also the Total IGA because if you don't make enough IGA that will cause a false negative on the IGA tests

If there are other things he should be asking for, or if this isn't right... somebody, please chirp in!

Thank you sooo much for this! The nurse is mailing me my workup sheet, so I will be sure it's all being done. Thank you so much for taking the time to get that information to me--this is the only place I don't feel crazy! Ha! I read so much on here and it's like I wrote it myself.

Praying for both of our results! Guess I'll quit asking questions and read up!

[Chas]

Obviously none of here are medical professions nor can we diagnose, especially over the internet. What we are telling you is based on our experience and those experiences of other posters that we have read. A common thread running through here is of people being diagnosed with gall bladder problems, having their gall bladders removed, and receiving no benefit from this procedure. They then go on to find out about the gluten intolerance. So who is to say whether their gall bladder would have gotten better by itself if they avoided gluten, and alternatively, who is to say that it wouldn't? If it were me I think I would hold off if there is no gall bladder urgency involved until you can get this whole gluten question resolved. I am not a believer in unnecessary surgery and removal of body parts, for sure. I have no idea of what a HIDA scan measures or reveals, so you have to take those results into account when making your decision. Talk to your doctor about what an "abnormal" HIDA scan actually means and its implications.

Thank you for your response. I will proceed with the blood work (now that I know what to ask for) and once that's done, alter my diet and wait. Obviously, I'll still meet with the "gallbladder dude " and hear what he has to say about it. But I plan on trying my darndest to keep it. The common theme I see on here is people having to take matters into their own hands- looks like I am in the same boat now and the waiting game begins.