Atrophy of the Pancreas but all my blood work normal

Thank you Suzy528 for your support. I can relate to the back pain as well. I have two herniated discs in my lower back and one in the mid back. I have had at least one surgery every year since 2002 and some years multiple surgeries except for last year … that was my first year without a surgery. I'm only 37 years old and have multiple medical conditions, however I do have a supportive family. I have two teenage sons that try very hard to help me (which makes me feel bad because I'm supposed to take care of them). The pain can be so excruciating and debilitating it's depressing. I had no idea what chronic pancreatitis was or how much it could affect one's body. I too get horrible headaches/migraines and it affects my sleep (not to mention I'm in menopause so I don't sleep much because of that either). I'm so sorry for all your pain and I don't wish this on anyone. I hope you find relief and have a blessed day.

Hi Hope4cure,

I recently went to my GI specialist who has ordered more blood work as well as a stool test and a MRCP. She explained a CT isn't that great of a "picture" to show how much atrophy of my pancreas or the cause of the atrophy. Since I used to be a paralegal I am one to research. I have read that sometimes when your gallbladder is removed (mine was removed back in 2003) it can cause an acute pancreatitis attack which then can turn into chronic pancreatitis. I don't know if that's the case with me or not. She also said it's not common for people my age (I'm 37) to have chronic pancreatitis unless cystic fibrosis runs in the family and as far as I'm aware it doesn't run in my family, however I don't know my biological dad's side of the family that well. Furthermore, she explained that when the pancreas is damaged (atrophied) enough it stops producing the enzymes it's supposed to and because of that your blood work will appear normal … (I guess that's why she ordered the stool test). What I have been reading is the pancreas produces certain enzymes that help us digest foods but when the pancreas isn't working properly the enzymes are activated beforehand and it causes the pancreas to literally digest itself. I am now on digestive enzymes that I have to take before every meal until she figures out the cause of my pancreatitis. She said it's possible that I may have a stone stuck in my bile duct or there's also pancreas divisum (two ducts become one, I believe that's what she said or it's narrowing of the two ducts, I can't recall). I am scheduled for a MRCP (basically a MRI with and without contrast) which will give her a better picture of what's going on in my abdomen. I too don't eat fatty foods (I couldn't after my gallbladder was removed) and I don't drink. I used to weigh 154 pounds and I am now down to 115 pounds because I'm unable to digest and/or absorb the foods I eat. I also read when the pancreas is atrophied to a certain degree you stop feeling as much pain (which I haven't had that much pain in the past week). I'm thankful I'm not in a great deal of pain but it also kind of scares me. My specialist recommended that I drink Ensures and take the digestive enzymes but unfortunately there's no cure for pancreatitis. I don't know if you're on any medications but if you are, I would look up any side effects because certain medications can cause pancreatitis. I am stumped as to why I have it (the CT only revealed atrophy, didn't say fatty replacement) but I am on estrogen because I have no female parts and I'm wondering if that caused it. I also have a nerve disease and have undergone multiple spinal blocks, epidermal and I read some steroids can cause it. I have had abdominal surgery and trauma to the abdomen can cause it. Oh and if you did have your gallbladder removed, sometimes they can nik your sphincter of oddi which can also cause pancreatitis. There's many causes, I just don't know how or what caused mine. I sincerely hope you find answers and you're not in a lot of pain. Good luck.

Hi Shorty, saw your post from 10 months ago where you replied to Hope4... 

Super helpful post! What enzymes do you take? Do they help? I’ve been dealing with a bunch of health issues with little results from my doc. Have you run across any useful natural remedies for pancreatitis? Seems like there should be some way to balance the enzymes.

I’ve read that exercise with pancreatitis can cause some problems. Have you run across this? I’ve been really struggling for several years because my health has degraded so that exercise is extremely difficult.  I’ve always been very athletic. 

I’ve felt my liver and gallbladder were in bad shape after being on thyroid meds. A scan showed a fatty liver and lesions- “wait and see”. Nothing showed in the gallbladder, though I have massive pain. When I got the abdominal scan for the gallbladder, they also scanned the appendix and the technician left the room five times. I guess she didn’t have a code for what she was looking at, since the appendix scan came up empty. I also have had my appendix burst that wasn’t treated properly. Eventually a doc pointed out I likely have subacute stump appendicitis. 

I should have asked my doc to look at my scans instead of just the report.

The scan was several years ago. But the massive abdominal boating doesn’t seem to ever really go away, though it’s gone down substantially. It does increase when I eat, and sometimes when I sleep.

Hi Catherine,

The enzymes I take are Creon. To be honest, I don’t know if it’s the enzymes or the the medication that I’m also on for gastroparesis that helps my bloating. However, I did notice a difference after starting the enzymes with my overall symptoms. As for any natural remedies the only thing I can suggest is drinking lemon water. I have developed kidney stones because of my pancreas issues. The urologist advised drinking lemon water helps prevent the formation of kidney stones. Other than that, when having an attack stick to a liquid diet for a couple days and drink plenty of water. Leaning forward and/or laying propped up with a heating pad on your stomach helps. 

Also, I asked for copies of my reports and then looked up what they said (I don’t speak medical terminology LOL). After many months and tests my doctor said she saw no reason for my abdominal pain but it was I who advised her that the CT Enterography report indicated atrophy of the pancreas which according to my research was associated with chronic pancreatitis. After she reviewed her notes she advised me I was correct and referred me to a GI specialist. It wasn’t my doctor’s fault because it was out of her expertise.  It still took quite a bit of time before I was diagnosed with Pancreas Divisum and then officially diagnosed with chronic pancreatitis but if I hadn’t read my own reports, I might not have a diagnosis or be receiving treatment today. Only you know your body, therefore you have to be your own advocate, in my opinion. I hope you feel better soon. 

Thanks Shorty. I feel like I’m having an attack. I was previously drinking lemon water because I’ve been getting these weird calcification everywhere. But now I feel the lemon is too much fir me to handle. My stomach has been totally bloated for years. About ten years ago I kept having this really weird burning in my mid back.  A few years later my thyroid pooped out. I see that 25% of chronic pancreatic patients are also hypothyroid. I always felt I had low thyroid. I always thought the sluggish liver was due to hypothyroid and slow metabolism... I’m to the point where I become violently ill ehen I eat any wheat / gluten products- I avoid even trace amounts. The I see that celiacs disease (gluten intolerance) is associated with both hypothyroid and pancreatitis. The stomach issues (I got ‘em all) also overlap between hypothyroid and pancreatitis. I thought all this was caused by a chemical exposure I had in my 20s to a bromine compound leading to hypothyroidism. 

What caused what?

I realize I’ve been dealing with the pancreatitis for at least a decade, thinking it was hypothyroid and toxicity. Anti-inflammatories (OTC) help. Im trying to find some herbs that help. I may try turmeric due to its anti inflammatory properties.

I see your story that you saw your labs indicated pancreatitis. I’ve been to easily over a dozen doctors and not a single one of them suggested the possibility of pancreatitis. I’ve got 30 pounds of edema and my belly protrudes so far I look pregnant! All the thyroid meds made the stuff worse. Why was this not obvious to all these doctors? 

Hi Shannon15641,

I finally received a diagnosis after the MRCP. I actually have a congenital abnormality called Pancreas Divisum (it’s where you’re born with two pancreatic ducts that don’t fuse together) which has caused the chronic pancreatitis. I see a pancreas specialist every other month for an ERCP to help dilate my ducts.  Apparently, I have been having acute attacks all my life but because I have other medical issues it was always blamed on another issue. One thing I have noticed is my ALT/AST enzymes elevate but that’s all. Furthermore as the pancreas atrophies your blood will actually go down and not up. My GI doctor thought my symptoms were more IBS related until I insisted on seeing a pancreas specialist. I still have days were I cannot eat much but it’s much better than before. Ask for a MRCP because that’s the only noninvasive test that really shows the pancreas. I hope you feel better soon. 

Hi Shortie ,

I hope you can feel better with and appropriate treatment . You have a lot on ur plate. Keep us posted. Courious to hear what the treatment is! Pancreatitis is a serious diagnosis . I wonder if IBS is a symptom of it?,

Healing wished sent ur way! 

Hi Hope4cure, 

The treatment I receive for Pancreas Divisum is the ERCP. All the doctors can do is try to minimize the symptoms of pancreatitis as much as possible since there’s no cure. As for the IBS, I didn’t feel like I had the symptoms of IBS especially because I was losing weight unintentionally and I’m bedridden. Plus the pain was horrible and I didn’t think IBS had pain that was debilitating. 

Hi Shortie,

I am glad to hear you receive treatment. How often do you need it?

Are you sedated with treatment? 

In my experience with IBS I was constantly cramping after every meal and lost a lot of weight. I knew where every restroom was in the city.It's better now and watch foods I eat and exercise to keep the mobility factor in gut mobile.

i didn't know you are bedridden. How long ? Are you home and do you get a chance to get out? That's no fun at all,  been there done that from a bad hip implant. 

Its really hard to depend on others. I used a 4'wheel Walker with a seat, to get around for some independence. Are you able to get up at all?  

So  sorry to hear this. Need support?  this forum is a great place to find others with similar health issues .👍

 

Hi Hope,

I receive treatment every other month now. The first ERCPs I had in two consecutive months. The long term goal is to widen my ducts to achieve adequate drainage and prevent future pancreatitis attacks. I’m sedated and hospitalized each time. They admit me for observation because an ERCP can cause a pancreatitis itself. I’m fortunate that only happened the first time. As for me being bedridden, I’ve been like this since 2014. I have a nerve disease that makes my nerves misfire and contracts my muscles. I don’t have control over my lower limbs. It’s quite painful at times but I’m able to take care of myself for the most part. Also I never have the problem with needing the bathroom … mine is the opposite, that’s why I felt IBS didn’t fit my symptoms. I would bloat big time after I ate (even an Ensure) and after the doctor thought it was medication induced gastroparesis. Once I was put on a medication for that my symptoms improved. 

Thank you Shortie for all your kind responses. I hope that treatment can put you in remission. I hope the ERCP treatment works for you. You definitely need a break. 

I am very sorry to hear of your illness . I have nerve pain from shingles and the constant itch burning sensation. No relief so Far! Very unpleasant. I can't imagine your nerve pain. All in all you have a positive attitude and sound as though you are well taken care of and doing well. 

Are you in the U.K.

 

 

Hello Shortie79 thank you so much for this information I will pass on to my doctor. I have asked about the ECRP but my doctor said it is risky. The Ct- scan shows severe atrophy of the whole pancreas. I have a question do you crave sugar? 

Hi Shannon15641,

I don’t necessarily crave sugar … very rarely do I get a craving but sometimes I do get a sweet tooth. Unfortunately, I have to be careful with sweets. I have found when I eat sweets I tend to get migraines. I eat apples if I crave something sweet now because the natural sugar in an apple helps with the sweet tooth craving and I don’t get a migraine. It’s been a mini battle trying to figure out what I can and cannot eat but that’s something the doctor said was going to be hard. I’ve always been on a low fat diet because I don’t have a gallbladder or an appendix, therefore I have to be very careful with my food. Unfortunately, with pancreatitis any food can trigger an attack, it just depends on your body. It’s good to speak to a dietitian or nutritionist to see if you have food intolerances. Plus pancreatitis can lead to malabsorption which has caused my hair to fall out. I’m now on digestive enzymes to help. 

Hi Hope,

No I don’t live in the UK, I actually live in California. A part of me wishes I did live in the UK because they have a better health system over there. I’m sorry to hear you have shingles. Shingles runs in my family on both sides. I know what’s it’s like to live with nerve pain… it’s hard to describe that pain. I hope you feel better soon. 

U.K. Has public and private health care.mthe waiting timsenandoc is long from most post I read on the forum. Some complain they are not getting care they go to private care . 

You live in sunny California. How wonderful.  fires are all over the news. Pray for those you lost their homes.

 

Wow! What a f#*%king eyeopener this thread has been! 

I have thyroid disease and since taking synthetic thyroxin have a very distended abdomen, worsening even though I’m off meds. I’ve also been reading thousands of posts in the thyroid section because, guess what? They all have difficulty getting diagnosis and effective treatment.

For the pancreatitis,   I’m not much of a drinker. Everything I’ve read points to alcohol or medication as the cause of pancreatitis. So I assume it’s medication induced. 

But then I see it can be gallbladder related as well.  Everything is connected and nobody’s treating the whole person. 

I also live in California and have found the medical system to have degraded so much in the past decades, that’s its useless going to the doctor. The standard approach is to do nothing and wait until whatever it is, is so bad they need to cut it out, put you on permanent pain meds or offer medication that doesn’t work and has side effects worse than the disease.  “Preventative” medicine is a test that indicates whether or not they prescribe medication. 

I’ve been off thyroid medication now for a year because it was making me so sick. I tried no less than 8 different ones. There is no question as to the diagnosis of thyroid disease, as I have a giant growth on my thyroid.  No doubt, I still have hypothyroidism since I can’t taje the meds. I’ve done alternatives that work better, but I still have symptoms.

Ive been struggling with belly bloat and severe adema now for several years since the start of the medication and it hasn’t gone away now that I’m off.

With the low thyroid, there are other issues. My diet is extremely strict, though I do sometimes have a little sugar. I’ve had to troubleshoot everything myself because the doctors can’t seem to make even the simplest diagnosis. It’s laughable, except it’s so tragic.

I’ve got the thyroid disease and all the related problems and symptoms, plus the long term side effects of the synthetic thyroid medication. Looking online, the side effects range from thyroid disease to fibtomialgya, various cancers, and yes, my latest search for pancreatitis also shows it can be related to thyroid medication.

So now, I’m like, well, what else can be causing this horrible bloat?  It seams pancreatitis is the most likely culprit.

Then I see that pancreatitis can be caused by gallbladder problems.

I see that many if the folks posting about pancreatitis have other medical problems. Is the pancreatitis caused by the meds for other problems? Is it the cause? I see a lot of gut, appendix and gallbladder issues posted in relation to pancreatitis. Yup, I got those issues too.

And I see that contrary to medical belief, most people posting are not heavy recreational or drug or alcohol users, yet they have pancreatitis.

I also see a lot of people posting who can’t get diagnosed because their blood work doesn’t show abnormality.  They are eventually diagnosed by other means. So I can only conclude that the blood work is a very general guideline and shouldn’t be used to dismiss a condition. Also, I conclude that patients know their bodies quite well and from everything I’ve seen, only Pursue a diagnosis once they’re really sure anout what disease they have.

I’ve been dealing with my thyroid and related issues, as well as my elderly mother’s geriatric conditions. Each time I encounter a new problem, I eventually realize it was caused by medication or medication withdrawal. The more meds I weaned my mother off, the more she improved. The hospice nurses told me this is quite normal that patients improve when taken off their meds. All the while, the doctors are completely freaked and insist that she will die immediately without the meds. Obviously, she hasn’t died, and in fact has improved greatly.

I’m not sure if there’s anything worth bothering with or expecting to get any sort of results with this totally dysfunctional system. I waste time and get no answers, no solutions, no real treatment. I’ve gone completely to alternative treatment because it’s more effective and less side effects. So what good is it going to the medical doctor?  I’ve been so sick, my insurance has expired because I’ve not been able to respond and I wasn’t using it anyway. What do people do?  Is this why, in England there’s both public and price heath care?

 

I see people with pancreatitis control it with lifestyle and diet changes. Are there any other ways to treat it? Herbal? Do doctors have a treatment for it?

If anyone’s actually read this far, thank you. I’d love to hear how others are dealing with these challenges.

Hi Catherine,

Sorry to hear about all you’ve dealt with. To answer your question there’s no cure for pancreatitis therefore doctors can only treat the symptoms. In my case I have to go every other month for ERCPS for treatment. However, my case is a little different because I was born with two pancreatic ducts that never fused. My condition (Pancreas Divisum) is actually very rare and only happens to 5% of the population. When getting an attack we usually have to rest our pancreas by drinking fluids and not eating. Oh and there’s also digestive enzymes that are prescribed which are important if your pancreas has stopped producing them. All and all there’s not much the doctors can do, it’s basically diet because your body changes how you absorb your foods. I wish I had better news. I hope you feel better soon. 

Ok, so diet...  for years I’ve had difficulty digesting fats so I was on very low fat diet. I eventually found that a high protein diet worked really well for me. Later went to a gluten-free Paleo style diet, with a little more fat. I haven’t been able to eat much in the way of raw foods for many years. I can do some salads now after doing amino acid therapy. Are there some improvements I can make that will help my pancreas in addition to reducing fats?

It seems obvious to me that the pancreatitis is triggered by foods, particularly fats.  Are there other foods that trigger pancreatitis? Seems like anything I eat causes massive bloat.  I’ve put on tons of weight the last few years. Would mild fasting give the pancreas a break? Maybe a fresh vegetable juice fast, so there isn’t too much sugar? 

I’m not a fan of fasting. It just seems that if eating triggers it, and I clearly have plenty of weight as a buffer, maybe a little fasting would give my pancreas the break it needs to heal some.

Anybody had any experience with this?

Hello Shortie79  I am curious to what your sugars show?

​Thanks

Shannon

Hi Shannon,

I’m not certain I understand your question correctly but if you’re asking what my glucose level is, it’s 78 (reference ranges from 70-199 according to this lab). I’m within the normal range. My blood work was taken with my last ERCP in December. My glucose levels have always been within the normal range except two times, they were above normal by a couple numbers … nothing outrageous. 

Hi Shorty, your feedback has been very helpful. I changed my diet to very simple- white rice, chicken and vegetables. Small portions totalling an 8 oz bowl, three - four times a day. Turmeric/bromelin combo capsules with every meal. Little or no fruit for now, as it sends me into a problem- relapse. The bromelin seems to help a ton and I don’t do well without it. If I’m still bloated before bed , I have a bit more to eat with the herbs and take an anti inflammatory.  

I’m doing much better now and the massive belly bloat and water retention is quite reduced as long as I stick with the program. If I deviate, I get a massive bellyache!

I’m actually quite delighted to know what the problem is so I can get my health back!

Thank you so much!