Pain.

[DreamWalker]

I don't know where to start and I was recently discharged from the hospital and am on pain-meds so please bear with me.

Back in the beginning of October, I was told I have Celiacs Disease so I went gluten free and continued eating dairy free. (I already knew about the lactose intolerance.) After a month or so I noticed a huge remission in symptoms. Before, I'd throw up almost daily, watery-diarrhea 10-12 times a day, and had a slew of other problems (from aches to mouth sores to being too exhausted and full of whole-body aches to take a walk down the street.) Originally, when I started seeing a GI the only thing they found was a malfunctioning gallbladder with an ejection fraction of 24%. It was the surgeon who pointed out the probability of Celiacs. However, despite the stomach pain I wanted to wait on surgery and see if my gallbladder improved with time and the gluten-free diet. Until mid-to-late December the pain I attributed to my gallbladder decreased unless I accidentally ate something cross-contaminated which is when it becomes excruciating. For the most part, the pain is a constant burning presence in my upper right side that pierces through my back and climbs up my shoulder-blade. But it spreads to the upper left side (between my ribs) where it shoots through my back and between my shoulder blades. A few days ago, I had another HIDA scan run (this is the test that sent me from a 4 on the pain scale to a constant 8/9) and it showed my ejection fraction to be 91% something the ER doctor (24 hours after the scan the pain was so excruciating & I couldn't even hold down water I wound up in the ER) said he had never seen or heard of anything like this before. I'm at my wits end with this pain. It's so intense that it eats through morphine. I can't remember what medication the ER gave that the pain finally responded to. . . I was curled up in a ball and pretty much incapable of talking.

I'm so petrified of reaching that level of pain again that I'm terrified of food. They sent me home with percocet (vicodin which I was previously prescribed before barely touches it) and take that every time I put anything in my mouth. Obviously, I can't continue on much longer like this. I'm only 22 and at a loss of where to go from here. I'm hoping the intensity of the pain recently is merely a reaction to the CCK but it feels more like they woke up whatever was wrong and it's not subsiding to the point I can eat comfortably until I figure out what's at the core of the issue. I'm scared of eating as little as I am right now because I was/am having malabsorption issues (which lead to osteopoenia and an arm fracture that's having a difficult time healing) and need to take my supplements with a decent amount of food. (Plus, I've already lost 8 lbs since December and didn't have eight pounds to lose in the first place.) I've gone over everything: supplements, medications, shampoo, lotion, etc etc nothing has hidden gluten. I also cut out soy a few months ago. My stomach is so bloated lately, I've been asked if I was expecting on multiple occasions which is why I thought it was hidden gluten. I'm supposed to make an appointment with my GP on Tues but I'm sure he's going to shake his head in confusion....Hopefully someone here has heard of something like this before and I could suggest a starting point at the appointment. The only thing I could think of is maybe, possibly, I'm having constant small-grade allergic reactions to something unknown that's sending my immune system into overdrive. (But really, this is the thought process of a 22 year old on a hefty amount of pain meds lying in a hospital bed so I have no idea if I'm on the right track.) The thinking that lead me to that possibility was a history of multiple allergies to antibiotics. (If I take a particular antibiotic I cannot take that antibiotic or any in its family on another occasion without hives & serum sickness.)

Bah. Well, even if you're as stumped as me thank you for listening to my ramble. . . .

[tom]

Aw jeez I wish I had any sort of suggestion at all.

Hopefully someone else here has some.

Can't even think of what type of specialist to ask for a referral to when you see the GP. Maybe an Internist?

[ravenwoodglass]

"A few days ago, I had another HIDA scan run (this is the test that sent me from a 4 on the pain scale to a constant 8/9)"

I am so sorry this is happening. I would get back in touch with the doctor that did the scan. Did they inject anything or give you anything orally? The only guess, and it is a guess, is that you may have had an adverse reaction to something you were given during the scan. It sounds like your gall bladder recovered, that is a good thing. Have you tried taking something like Pepto Bismal? If so does it help? I am glad they are getting you in to see a GI and I hope he can do something that helps.

[rinne]

Hi, and welcome.

I'm sorry you are in so much pain right now, I spent some time flat on my back with pain also.

I have used castor oil packs and also ice packs for pain, I have found them both helpful at different times.

I hope you can get some relief soon, when I was most afraid of eating I looked to an ulcer diet, very gentle food, no peels, not even the skins on green peas. Bananas were often the only thing I could get down but I know now that I should have been eating them when there were very ripe. Oh well.

I too had a test that raised my pain scale from about a 6 to an 8 and some days 9, it was horrible. In my case it was a CT scan and I refused to drink the solution, I was very thin at that point and about a month after the test I learned that they were apparently having problems over radiating small women and under rating large men. A CT scan is the equivalent of a 100 chest xrays!

Now I think it is just insane to take someone who has lost forty pounds in a few months, is obviously very ill, and radiate the poop out of them. I felt scorched inside.

Peppermint tea is soothing to the stomach and ginger tea (use fresh ginger) is helpful with nausea and inflamation.

This is a great site, I am glad you found it.

[DreamWalker]

Thank you for all the replies. . .

Actually, my GP is an internist which sounds pretty strange now that I think about it but I started heading into the doctor for stomach problems as soon as I moved to the area and never sought out another doctor aside from specialists (a GI followed by a surgeon.)

During the scan they injected me with CCK and *something* else. I phoned later that night and spoke with the doctor on-call. He (and the technician during the scan) said that adverse reactions should only last 30 minutes & usually end with nausea. But he wanted me to head into the ER that night and didn't dismiss the possibility of my having an adverse reaction at all. However, the ER doctor was capable of looking up my medical history with the hospital and said the test's effects would have dissipated by that time. Plus, it is a chronic problem. The test seemed to jumpstart what was already becoming worse. (There were several nights in a row where I was incapable of doing much else than curling up on the couch in pain. . . even before this test.)

I haven't tried fresh ginger tea yet but routinely drink ginger & mint teas. (Even before the Celiacs diagnosis stomach problems lead to me finding their usefulness.) Pepto bismol works mildly for nausea yet it does nothing for the pain.

Rinne, I'm terribly sorry to hear about that CT scan experience. How long did it take you to recoup? I had an abdominal CT back in November that left me ill for about a week. Although, for the life of me I can't remember any of the remedies I used during that time nor what foods I ate.

Anyhow, I'm looking at that ulcer diet. . . currently the only things I seem to eat without extreme consequences (consuming anything aside from water seems to wake up the pain) are apple sauce and yams. Yet, I'm leaving the skin on my yams so I'll try peeling them and seeing how that goes considering I was throwing up yam this afternoon. (They didn't start the PAIN which is the only thing I'm afraid of. Vomiting I can deal with... I had that problem for years before the Celaics diagnosis.)

Although, google lead me to this article: Open Original Shared Link

which seems hopeful in the very least. Actually, that could hopefully explain a great deal of this pain.

[rinne]

I don't have a clue what CCK is, do you know and I wonder what that something else was? I suppose at this point it really doesn't matter so much, what matters now is feeling better.

I just seriously question the tests they give us when we are sick, when I was going to have the C.T. scan I read up on the iodine mixture they give people to drink and discovered that two in a thousand die from it, and recently I read that a follow up study in England showed that one in a hundred die a month after their endoscopy! I know many of them would have been very ill but that is just my point, when someone is very ill why expose them to something which may make kill them.

I am no doctor and not all that "scientifical" but it seems to me we go in sick and come out sicker once they start running test after test. I was in so much pain at that time it was difficult to determine when it lessened but I would say the feeling of having been scorched lasted close to four months.

I'm glad you know about ginger and mint tea and nausea, what about castor oil pack? I've also taken an ice pack and curled myself around it just to numb my stomach, it helped.

How about some poached chicken? homemade chicken soup? I'm thinking some protein would be a good thing.

I hope today is a better day. Off to read your link.

.......

During the scan they injected me with CCK and *something* else. I phoned later that night and spoke with the doctor on-call. He (and the technician during the scan) said that adverse reactions should only last 30 minutes & usually end with nausea. But he wanted me to head into the ER that night and didn't dismiss the possibility of my having an adverse reaction at all. However, the ER doctor was capable of looking up my medical history with the hospital and said the test's effects would have dissipated by that time. Plus, it is a chronic problem. The test seemed to jumpstart what was already becoming worse. (There were several nights in a row where I was incapable of doing much else than curling up on the couch in pain. . . even before this test.)

I haven't tried fresh ginger tea yet but routinely drink ginger & mint teas. (Even before the Celiacs diagnosis stomach problems lead to me finding their usefulness.) Pepto bismol works mildly for nausea yet it does nothing for the pain.

Rinne, I'm terribly sorry to hear about that CT scan experience. How long did it take you to recoup? I had an abdominal CT back in November that left me ill for about a week. Although, for the life of me I can't remember any of the remedies I used during that time nor what foods I ate.

Anyhow, I'm looking at that ulcer diet. . . currently the only things I seem to eat without extreme consequences (consuming anything aside from water seems to wake up the pain) are apple sauce and yams. Yet, I'm leaving the skin on my yams so I'll try peeling them and seeing how that goes considering I was throwing up yam this afternoon. (They didn't start the PAIN which is the only thing I'm afraid of. Vomiting I can deal with... I had that problem for years before the Celaics diagnosis.)

Although, google lead me to this article: Open Original Shared Link

which seems hopeful in the very least. Actually, that could hopefully explain a great deal of this pain.

[rinne]

From your link:

Gallbladder disease should be considered in Celiac disease patients despite normal ultrasound and HIDA tests, especially if a "supranormal" ejection fraction is noted and pain reproduced with CCK. Patients with abnormal high gallbladder ejection fractions should be considered as possible undiagnosed Celiacs and should undergo blood tests for Celiac disease and consideration of upper endoscopy with small bowel biopsy.

I see what you mean.

[ravenwoodglass]

CCK is a hormone that causes the gallbladder to contract. The radionuclide was most likely the other med given.

Open Original Shared Link

... In this test, called a CCK-HIDA scan, the HIDA scan is done as described above. After the gallbladder is visualized, the hormone cholecystokinin (CCK) is given to cause the gallbladder to contract. By using a computer attached to the gamma camera, the amount of radionuclide ejected from the gallbladder after stimulation with CCK can be calculated and reported. If the "ejection fraction" is very small, one may predict that removal of the gallbladder will relieve the patient's symptoms.

[Janeti]

Two months before I was diagnosed with celiacs, I had those same kind of pains. They did the HIDA with cck, and when the cck was injected the pain and the nausea was intolerable. Upon reading the results, the radiologist deemed it a "normal functioning gallbladder" But when the GI heard of my discomfort during the test, he made an appt for me to see a surgeon to have it removed. When pathology came back, they found that the gallbladder was not only not functioning, but also diseased.

Sometimes those tests are really not that accurate

[cat3883]

So did you or didn't you have your gallbladder removed? If not that's the problem. Have them yank it out ASAP

[ang1e0251]

Two months before I was diagnosed with celiacs, I had those same kind of pains. They did the HIDA with cck, and when the cck was injected the pain and the nausea was intolerable. Upon reading the results, the radiologist deemed it a "normal functioning gallbladder" But when the GI heard of my discomfort during the test, he made an appt for me to see a surgeon to have it removed. When pathology came back, they found that the gallbladder was not only not functioning, but also diseased.

Sometimes those tests are really not that accurate

That's almost exactly what happened to me also. My gallbladder was also diseased. They kept running tests and dismissing me say that since I didn't have gall stones, I was fine. If I hadn't pursued it, they wouldn't have operated at all.

I was very sick and I suspect you are even more sick than I was. Make someone listen.

[Lori T.]

I do know of something that will cause this pain and I got it out of my body after 6 years of excruciation:my gallbladder. I got to a point like you where anything but water just about killed me. Then it came to a head one night when I had nothing because I was trying to calm my stomach down. I tried to drink a glass of water and thought I was on my way to deaths door. I made the fastest run to the E.R. and screamed to make them do every test they had available. By then, my white count was so high it was freaking the ER doc out. That sucker went bye-bye real fast out of my body. Best thing I could have ever done from my perspective. Now that I know what your body needs to do to digest food though, I would tell you to check a site called: gallbladderattack.com It has good info for before and after surgery. Sometimes the diet is enough to help preven attacks they say. I was never given the option because no one knew. But, have had some issues since that have been addressed with the post surgery diet with success. Had the diseased,quiverring gallbladder one of the other posters said they had. It was a pain like no other and just to put it in perspective for you: I went into labor with my son on 9/25/89 and was not able to have him until 9/30/89- 3 minutes apart pain steady all that time, crowned him and ended up with a c-section anyway because he was 9 lbs. 10 oz and 36cm head, chest and rear end. His butt was the same size as his head!!! Now I can take some pain, but that Gallbladder was like nothing else I have ever endured and never hope to endure again in life!!!! I hope you get some relief and I will pray for you.

[DreamWalker]

Again, thank you for the replies. I haven't had my gallbladder removed yet. However, I went in to see my GI yesterday and she insisted that my scan results were normal since my ejection fraction was 91%. So, she said that I have a hypersensitive gut which is essentially like IBS and prescribed tramadol and a tricyclic antidepressant. The pharmacy wasn't sure if the latter had gluten in it so I'm waiting before I fill it. But my follow up appointment isn't for a month and I can't wrap my head around the fact that this is all it is when I'm barely capable of eating (still.) She said to drink ensure as she was concerned about my weight but I checked the ingredients list which states that it has both milk protein and soy oil. There's no way I'd hold that down, even if I were feeling well. What the hell? Between the sleep deprivation and lack of food I'm getting so confused.

I tried eating fish in an attempt for protein and my stomach became incredibly bloated and the pain became unbearable. (This is on both percocet and tramadol.) Nutbutter/sunflower butter yields the same reaction. Everything is bugging me even apple sauce but it's just not as extreme. A whole month? A hypersensitive gut? I can't see this being separate from Celiacs. I don't know what else to do except order my medical records and find a new hospital/doctor/etc. I pretty much begged her to at least try the surgery but she was concerned it would make me worse...

Lori, thank you for the link. Your story is pretty... wow. I couldn't fathom living in this hell for six years. Anyhow, before I was diagnosed with celiacs, I followed that site rather religiously - it helped in small ways. At the moment, the only thing I'm consuming that's on the "avoid" list are nuts... well, I'm attempting to eat them. The fish was the worst idea I had though, man do I regret that. So much of the pain is on the left side though. . . .

[ranger]

Again, thank you for the replies. I haven't had my gallbladder removed yet. However, I went in to see my GI yesterday and she insisted that my scan results were normal since my ejection fraction was 91%. So, she said that I have a hypersensitive gut which is essentially like IBS and prescribed tramadol and a tricyclic antidepressant. The pharmacy wasn't sure if the latter had gluten in it so I'm waiting before I fill it. But my follow up appointment isn't for a month and I can't wrap my head around the fact that this is all it is when I'm barely capable of eating (still.) She said to drink ensure as she was concerned about my weight but I checked the ingredients list which states that it has both milk protein and soy oil. There's no way I'd hold that down, even if I were feeling well. What the hell? Between the sleep deprivation and lack of food I'm getting so confused.

I tried eating fish in an attempt for protein and my stomach became incredibly bloated and the pain became unbearable. (This is on both percocet and tramadol.) Nutbutter/sunflower butter yields the same reaction. Everything is bugging me even apple sauce but it's just not as extreme. A whole month? A hypersensitive gut? I can't see this being separate from Celiacs. I don't know what else to do except order my medical records and find a new hospital/doctor/etc. I pretty much begged her to at least try the surgery but she was concerned it would make me worse...

Lori, thank you for the link. Your story is pretty... wow. I couldn't fathom living in this hell for six years. Anyhow, before I was diagnosed with celiacs, I followed that site rather religiously - it helped in small ways. At the moment, the only thing I'm consuming that's on the "avoid" list are nuts... well, I'm attempting to eat them. The fish was the worst idea I had though, man do I regret that. So much of the pain is on the left side though. . . .

have you had your pancreas looked at? Years ago, I had a bout with acute pancreatitus and you describe similar pain (pain in the upper stomach that radiates to the back- intense pain). I could not even swallow water, much less keep it down. Treatment was several days of strong painkillers and IV feeding and hydration, followed by a gradual return to liquid food. It was the most pain Ive ever experienced (3 natural childbirths included). I hope you feeln better soon. Susan

[RiceGuy]

Can you list the supplements you're taking? Perhaps someone will see something lacking, or something that you might be better off without.

As for what helps pain, my only experience indicates methylcobalamin (an active form of B12), and magnesium. Both are necessary for proper nerve function, without which there can be tremendous pain.

I do hope you get it figured out soon!

[cat3883]

Find a different doctor that will listen to you. My mom went through the same thing as you. Finally after she suffered for a long time her doctor agreed to removing it. The surgeon said it was full of sludge. Well no wonder she felt like crap. Also I watch a show on the Discovery Health channel. I think it is called Medical Marvels or something like that. There was a young woman that had her gallbladder removed but still felt like you are feeling. Finally after months of being in and out of the emergency room a doctor discovered that the tube (or vein) that ran from her gallbladder into the stomach had somewhat of a blockage. They went in and opened it up and she is fine now.

[DreamWalker]

I went back to see a random (walk-in) clinic doctor while I search for someone who is more knowledgeable or at least not bordering incompetent. As it turns out, my lipase came back high along with my alkaline phosphatase. Although my lipase was well above normal he said that my amylase was normal so it wasn't a pancreatitis. Yet, the alkaline phosphatase indicates a problem with my bile duct.... anyway.... um... I'm starting to wonder if my GI even looked at my blood work from the ER.

It seems the intense level of pain was a reaction to the HIDA scan or whatever it was they injected me with in addition to the CCK. Definitely be careful if you ever head in to have that scan.

My only problem now is that eating still brings back the pain but nothing like it was before so I'm holding down more foods than previously. So, I'm hunting for another doctor or clinic entirely.

Thank you guys for the encouraging words and help.