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Celiac With A Low Gallbladder Hida Scan, Need Experiences


The-Albatross

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The-Albatross Newbie

Hi Forum,

I haven't been here in quite a while. Basically I was getting used to gluten free and some things have improved. I had a low fracture ejection rate last year on my gallbladder (19%) And the GI doc said my gallbladded doesn't empty or sqeeze the way it should. I tried various supplements and detoxes and retested at 12 months. I am now at 17 percent.

I am concerned about having the prescribed surgery to have it removed because I certainly don't need more trouble with the Celiac disease.

If there's any experience to be had, I'm all ears, and thank you.


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The-Albatross Newbie

I guess what I'm asking is what to expect if I agree to have my gallbladder removed?

I dug around and found this link from another thread here, I'm just wanting some information about how this is gonna affect my Celiac Disease.

unknown Apprentice

Well, I know this isn't really the answer to your question...because I was diagnosed after I had my gallbladder removed, but I'm sure I've had celiac disease for a long time (I think celiac disease is what caused my gallbladder issues). Now that both my gallbladder has been removed and I am on a gluten free diet (it has only been like 3 weeks), I already feel better than I've felt in YEARS! I'm still not 100% of course, but I'm feeling so much better and I honestly don't know how I lived for so long feeling so crappy!

I am not the classic celiac (i.e., I never had the frequent bathroom problem or weight loss) and after you have your gallbladder removed a lot of people have that problem even worse than before (due to the constant bile flow into your intestines). Even after surgery, I still didn't have that symptom. So, if you already experience frequent bathroom trips that may be the only thing that you'd have to worry about. Also, my healing process was not quick and easy, but I think that's because I wasn't on a gluten free diet and my tummy was even more swollen than it already was. It hurt and the swelling lasted up until about a week ago (I had the surgery on June 30), but it was so worth it. I had 20 stones, chronic cholecystitis, and cholesterolosis.

Mari Enthusiast

Most of us who choose to not have surgery for bile system dysfunction and congestion are able to improve or eliminate the congestion by doing programs that have Liver/Gallbladder Flushes. There are several Liver Flush Support Forums online. Most of the programs advise parasite programs, a method of softening or dissolving hard calcium stones followed by Liver Flushes. Several experts have produced books on Liver Flushes - Hulda Clark, PhD, ND; Andre Moritz; Dr. Richard Schultze and Dr. Sutter's coke Liver Flush and others. I have been using one of these programs for the last 20 years and found it very helpful before I was diagnosed with celiac disease. I have been gluten-free for 6 years and no longer make so many stones and sludge and have been able to do the LFs less often. It seems that only an rare person who has damaged tissues, usually caused by an infection, will need their gallbladder removed.

The-Albatross Newbie

Yeah, thank you for your replies. I did flushes last year... consistently as well as something my chirpractor recommended A-F Beta Food, organic beet, and just tried to do the best gluten free I could last year. But really, I'm still looking for some post surgical experience. I'm really tired of feeling poorly. I have a lot of food intolerances and allergies. I am hoping to find some experiences so I know what to expect post surgically. Thanks, both of you for your comments.

unknown Apprentice

Oh, I'm sorry! I can give you post-surgical experience. After waking up, I was huge! They pump all this gas into your stomach (I had laproscopic surgery) and you feel like you can't really move. They sent me home after they injected me with pain medication, because they won't let you leave if you are still in pain. I got home (after I picked up my pain meds from the pharmacy) and I felt really out of it and super talkative, but okay. After a few hours the pain started again. It really hurt me to move because I could feel the gas in my stomach moving around. It hurts in your shoulders. I also had a hard time peeing. I felt like I had to push really hard. I basically ate nothing but mashed potatoes the first couple days.

Days 2 and 3 were the worst for me. My whole body ached like I had the flu which I think was from the anesthesia or something. I also couldn't keep any food down (I had to use the kitchen sink because I couldn't bend over the toilet) and I couldn't get up from half laying down position (I slept on the couch with pillows behind me, because I could not lay flat. It feels like something is being pulled inside). I also had a fever and called my surgeon, who said that it was normal to get a fever after surgery and if it lasted longer than a few hours to call back. The fever quickly went away (thank goodness!).

I know this doesn't sound so great, but by the 4th day I was off the pain meds (I still have like half the bottle) and was just sore. I only took 1 1/2 weeks off of work. When I went back to work, I still had swelling (I had to wear loose pants) and I had a very large black bruise from my belly button down. I was still experiencing swelling and some pain until just a week ago. They did a full CT with contrast after I could not go to the bathroom and it showed that everything was fine.

But, in all honesty...getting the surgery was 100% worth it. Even with the lingering pain I had after. Before surgery I was in pain everyday from my swollen gallbladder and when I'd have the gallstone attacks, I literally thought I was going to die. It was the worst pain I have ever felt in my life!

My boss had his gallbladder removed (he's much older than me...I'm 29) and he was totally fine after (he had the low functioning gallbaldder problem, too). He was out walking his dogs the next day! So, everyone has different experiences. Mine sucked majorly, but your experience could be awesome like my boss.

Oh, and the scars are super small! You can't even hardly see the big one in my belly button and the other three along my rib cage are super small. They're still red, but healing really well.

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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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