Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hida Scan Results


swcom120

Recommended Posts

swcom120 Rookie

I was wondering if anyone here can help me shed some light on my Hida scan results. I know most of you here are not Docs but I trust many of you more than I do the MDs at this point.

I havent been officially diagnosed but after 4 months of pain and suffering, trips to the ER and urgent care, I still havent been able to get a straight answer from anyone. Fortunately, I choose not to sit back and suffer through my symptoms and have been proactive in trying to get better. My "docs" are still at the "we are not sure but lets do the most invasive, expensive tests (I have no insurance)there is to try to figure this out" phase.

I decided to go gluten free a few months back with different levels of success. While the gluten free diet seemed to cure a lot of my GI issues it did nothing for my "head" issues. I was still getting very dizzy and had terrible headaches as well. Once it went beyond what I thought were normal withdrawals, I ended up in a couple of more doc appts trying to find help. Of course I got none. After doing the research myself I decided that I must have some type of anemia. To make a long story short I had some B12 shots given to me by a relative and started up on B12 supplements as well as some other Vitamins I thought wouldnt hurt. Well, im glad to say those symptoms have gotten a lot better ever since. I still struggle with fatigue and slight brain fog but I figure that just needs time and possibly a better way of taking vitamins. I am currently waiting for my Iron levels that I had checked by one of the docs.

I wanted to make sure that I covered all the bases, so I went in and had a Hida Scan done. They had already done an ultrasound in the ER during one of my flare ups and it showed no stones. I was still having some GI issues which I figured was gastritis from either the anemia or the heavy use of NSAIDs that I had been on for the headaches. But I wanted to make sure it wasnt my gallbladder.

I received my results today and this is what they say,

Initial uptake and configuration within the liver appears normal. Activity first seen within the gallbladder at 10 minutes with continued accumulation. Activity reached the duodenum by 25 minutes with continued passage. Following CCK, the gallbladder did contract. The gallbladder ejection fraction was estimated to be 31%. Normal ejection fraction is 35. Clinical correlation would be recommended.

Clinical correlation? Does that mean they want it yanked? lol

I have read up a lot about Gallbladder issues but I hear people mention functionality, would that be the same as ejection fraction? Either way I wouldnt have my gallgladder out for that number anyway. I have heard a lot of people talk about wishing they had not had their gallbladders removed until being off of gluten for a while. I can already see my docs blaming all of this on my gallbladder just to get me off their backs for now, then me ending up back in their office a couple of months down the road with the same issues.

I never really thought my gallbladder was an issue, but how do I move on not knowing for sure that it isnt?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It takes some time to heal and slip-ups with gluten or CC are really common in the first year or so. Your scan results were very close to a normal range and while I am not a doctor I wouldn't think that being that close to a normal range that they are going to blame everything on the gallbladder and want to yank it.

Continue with the diet and the vitamins since that is helping you and go with as much whole unprocessed food as you can and be careful about CC. Hopefully you will be feeling better soon.

mushroom Proficient

I am no expert on gallbladders, but did some quick googling. A normal ejection fraction is considered to be 35% - 75%. Yours is a little low. But... you have been gluten free for only two months and are still healing. Many posters on here have had gallbladders removed with no improvement in symptoms. You should definitely follow up with your doctor about the "clinical correlation" but if I were you and the pain were not intolerable I would hold off on any gallbladder surgery untill you are a little farther down the healing road, since gallbladder pain/problems seem to be tied in so frequently with celiac, and see if a gluten free diet can correct the problem. Again, not a doc. disclaimer, this is not medical advice, just reporting what I have observed from other posters on the forum.

Marilyn R Community Regular

Even though I have insurance, the (unrelated to your topic) surgery I had cost me $5,000 out of pocket. I am absolutely convinced that it was unnessary and would have worked out with a strictly gluten-free diet and time. That was my experience and not necessarily yours, of course. Good luck, hope you feel better soon.

swcom120 Rookie

I am no expert on gallbladders, but did some quick googling. A normal ejection fraction is considered to be 35% - 75%. Yours is a little low. But... you have been gluten free for only two months and are still healing. Many posters on here have had gallbladders removed with no improvement in symptoms. You should definitely follow up with your doctor about the "clinical correlation" but if I were you and the pain were not intolerable I would hold off on any gallbladder surgery untill you are a little farther down the healing road, since gallbladder pain/problems seem to be tied in so frequently with celiac, and see if a gluten free diet can correct the problem. Again, not a doc. disclaimer, this is not medical advice, just reporting what I have observed from other posters on the forum.

Exactly, I by no means am even thinking of surgery at this point. The thing is that I dont even believe that the pain I have is coming from the gallbladder. I have purposely tried eating some fattier/greasy type "gluten free" foods and have not noticed any change whatsoever. The only thing that makes sense to me at this point is gluten intolerance, and since I have been Gluten free now for a couple of months its too late to even try to get tested. I did go on a binge about 2 weeks ago that I am still paying for today, but I have since resumed my diet and I am feeling better by the day.

My issue in a way is that I am one step ahead of the docs and I cant get things tested for because I choose to feel better before confirmation. For example my doc didnt want to test my B12 levels because my CBC didnt show any abnormalities. So I started taking supplements and I started to feel better. Then you tell them that and they say its too late to test because I am on the supplements. Im hoping the Iron tests I had done show something so that he believes my malabsorption claims.

I hate that I have to make myself sick just to find out whats wrong with me when they had 5 ER visits to help me with it. Ok, now im venting but its been very frustrating. I hope and pray that I am on the right track but fear that something will eventually pop up thats going to send me back to square one again.

So far ive had the following tested,

CT scan of my head because I couldnt stand the pain of what I feel are the results of a severe glutening.(the binge I spoke about)

EKG (a couple of them)

chest xrays

thyroid tests (because I asked for it not the docs)

H pylori tests (which I also asked for)

Gallbladder Ultrasound

Hida Scan

All of this out of pocket for a small business owner trying to keep his business afloat.

Diagnosis so far for which they have prescribed me meds for

Anxiety

Depression

Gastritis (which I believe I have)

Acid Reflux

Anxiety

Anxiety

Anxiety

Everytime ive gone into see a doc they think im going crazy. Im smarter than that though, I have not filled any of those meds with the exception of Omeprazole which seems to help my tummy a bit.

I know im not going crazy and I know that they are just pretty much guessing so thats why I choose not to take any of those meds.

Ok, I need to stop this rant now. :D

mushroom Proficient

Yours is a familiar problem, I'm afraid (been there, done that :D ) You give them 20-30 years to diagnose you, they totally fail, tell you it's all in your head, you're anxious, you've got IBS. Thanks to the internet (which they hate :ph34r: ) we can now do our own research, come to our own conclusions, initiate our own treatment, tell them what is wrong with us, and then they tell us "Oh, no, you must go back to eating gluten so we can make a diagnosis" :o Sorry doc, too late. Not going there. You had your chance. Now for goodness sake, follow through and check for the things that celiacs are often deficient in because you have the key to that door, the internet hasn't quite opened that one yet (although there are getting to be more and more things we mere mortals can order online!)

Yes the Omeprazole should help with the GERD, but eventually that should go away and you will probably not need it. Have faith that you will get better. Hope your iron turns out okay, but you do need your Vitamin D and B12 checked if they haven't been done already.

Jenniferxgfx Contributor

I've had reflux for years, and what I thought was a fatty food intolerance. I ate very low fat food to get by. Eventually my gall bladder really started hurting after I ate, and went thru all kindsa hellish testing. (the hida scan sucked with my back!) everything was too close to normal to justify surgery, which I'm thankful for now! Now that I'm gluten-free, I can eat a normal amount of fats and not be in terrible pain or frequent D. I'm POSITIVE it was celiac all along.

That's not to say you can't have a bad gb. I just think you'll KNOW if you do: pain after fatty food, low fevers, same pain in the same spot (urq


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jenniferxgfx Contributor

Oops I prematurely sent :)

But seriously I'd give the gluten-free diet a little time to see how you do and remember it'll take time to heal. But if you worsen with that right side pain, it may be gb troubles.

Good luck!

frieze Community Regular

The omeprazole will interfer with B12 taken orally. Oral B12 (incuding sublingual, which most is swallowed and absorbed in the GI tract) needs to be taken on an EMPTY stomache.

swcom120 Rookie

Yours is a familiar problem, I'm afraid (been there, done that :D ) You give them 20-30 years to diagnose you, they totally fail, tell you it's all in your head, you're anxious, you've got IBS. Thanks to the internet (which they hate :ph34r: ) we can now do our own research, come to our own conclusions, initiate our own treatment, tell them what is wrong with us, and then they tell us "Oh, no, you must go back to eating gluten so we can make a diagnosis" :o Sorry doc, too late. Not going there. You had your chance. Now for goodness sake, follow through and check for the things that celiacs are often deficient in because you have the key to that door, the internet hasn't quite opened that one yet (although there are getting to be more and more things we mere mortals can order online!)

Yes the Omeprazole should help with the GERD, but eventually that should go away and you will probably not need it. Have faith that you will get better. Hope your iron turns out okay, but you do need your Vitamin D and B12 checked if they haven't been done already.

Yeah, I dont plan on staying on the Omep for too long, maybe ill just use what was prescribed which is one refill. The last doc that I went to go see seemed bugged when I mentioned the MMA test for B12. I think he actually googled it when I was in the room with him. He said, "let me look that up" when I mentioned it. Are you kidding me? At that point they get offended and they dont want to do anything anymore. He insisted that I shouldnt have my B12 tested because I had already started supplements. I told him that since I didnt have insurance and I was going to pay for it anyway, that I wanted to get it tested. So he approved it along with the Iron. Thats why I hope that my Iron shows something, even if my B12 tests are tainted, it would support my malabsorption claims and I might be able to get B12 shots from him. Because its been so difficult to get any medical support I had to go "underground" and by a mexican product called Beyodecta Tri which is a B complex shot in order to help me out. If I do have anemia im going to need it for good so I need the doc onboard. Like I said earlier, its hard to get things done when you are one step ahead of the docs.

swcom120 Rookie

Oops I prematurely sent :)

But seriously I'd give the gluten-free diet a little time to see how you do and remember it'll take time to heal. But if you worsen with that right side pain, it may be gb troubles.

Good luck!

Thank you for your reply,

I agree, im not saying I have a healthy GB, but I also dont think its where my pain is coming from 100%. I also dont think its what needs the attention at the time. Right now I just wanna stay Gluten free and try to get these deficiencies worked out. I just gotta find that strength inside of me to stick with it and let myself heal before I get discouraged again. I think going gluten free will help improve my Gallbladder, not sure why I think that but there just seems to be too much connection between the two.

swcom120 Rookie

The omeprazole will interfer with B12 taken orally. Oral B12 (incuding sublingual, which most is swallowed and absorbed in the GI tract) needs to be taken on an EMPTY stomache.

Thank you, I had read that somewhere as well. I also heard that prolonged use of it can cause B12 problems. I tried taking my dose this morning first thing just to make sure it was on an empty stomach, lets see if I feel the difference.

ravenwoodglass Mentor

The omeprazole will interfer with B12 taken orally. Oral B12 (incuding sublingual, which most is swallowed and absorbed in the GI tract) needs to be taken on an EMPTY stomache.

Actually the sublingual B12 is absorbed through the mucous membranes in the mouth. You are supposed to hold the tablet under you tongue or between cheek and gums until it is completely dissoved. You do have to be careful not to chew it but it will dissolve pretty quick.

frieze Community Regular

Actually the sublingual B12 is absorbed through the mucous membranes in the mouth. You are supposed to hold the tablet under you tongue or between cheek and gums until it is completely dissoved. You do have to be careful not to chew it but it will dissolve pretty quick.

Yes, a small amount is absorbed thru mucosal lining, but a majority is swallowed. Any little help in bypassing a damaged digestive system! B12 is a very large molecule, when you mix it with food little of it is absorbed from the GI tract, needs to be pretty much alone in there, lol.

ravenwoodglass Mentor

Yes, a small amount is absorbed thru mucosal lining, but a majority is swallowed. Any little help in bypassing a damaged digestive system! B12 is a very large molecule, when you mix it with food little of it is absorbed from the GI tract, needs to be pretty much alone in there, lol.

We will have to agree to disagree about that.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,208
    • Most Online (within 30 mins)
      7,748

    Emily H
    Newest Member
    Emily H
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
    • trents
      Jason, I have a bone to pick with your terminology. There is "gluten intolerance" which I believe is synonymous with celiac disease and then there is "gluten sensitivity" which comes from Non Celiac Gluten Sensitivity or NCGS for short. It is true, however, that there is still a lot of inconsistency in the use of these terms.
    • Liquid lunch
      I can’t say this will work for everyone but for me the difference is incredible so might be worth trying. I’ve never been diagnosed celiac but via an elimination diet I realised I can’t eat any lectins, gluten soy and oats are particularly problematic. If I eat them I’m in bed for a week, then heavy bleeding and extreme pain for another, followed by a third week of bleeding on and off. My skin was a mess and it snowed when I brushed my hair. Since taking reishi and cordyceps mushroom tincture I can’t believe the difference, I’ve had a lot of help from this site so I want to return the favour. I took the tincture for my guts but the most apparent effect is that I feel like my brain works again, I can’t begin to describe how wonderful it is to be able to achieve basic things, I’ve barely been able to organise getting out of bed for so long, it feels like I haven’t been hit over the head with a mallet for the first time in years. Then I glutened myself, not necessarily gluten as so many things wipe me out but definitely ate something I shouldn’t have, I took a treble dose of the tincture and almost immediately felt much better so continued with the increased dose and three days (not weeks) later was back to feeling great, no bleeding involved. My skin is better than I can remember it ever being, I feel great 😊. I spend £1.50 a day on these but it’s worth every penny, I hope this helps someone else out there reading this. I wish I’d known about them 20 years ago. best wishes everyone 🍄 
    • Scott Adams
      Given your history of a high TTG (167) that decreased to 16 on a gluten-free diet, along with genetic confirmation of celiac disease, it’s likely the negative biopsy is a false negative due to not eating gluten before the endoscopy. Gluten is necessary to trigger the intestinal damage seen in celiac disease, and avoiding it can lead to healing and a normal biopsy despite ongoing immune activity (reflected in your still-elevated TTG). The inflammation observed during the endoscopy (“diffuse moderately erythematous mucosa”) could be residual damage, mild ongoing inflammation, or another condition like peptic duodenitis, but it’s consistent with celiac disease in context. Continued positive blood markers suggest ongoing gluten exposure, possibly from cross-contamination or hidden sources. Strict adherence to a gluten-free diet and follow-up testing are key to managing symptoms and reducing inflammation. Discuss these findings with your doctor to confirm the diagnosis and refine your dietary approach. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Yes, it sounds like great progress, but what was the time frame between the two endoscopies? 
×
×
  • Create New...