Help With Diagnostic:
For last 11 years I experience symptoms that resemble Chronic Pancreatitis in many ways, yet blood tests don’t confirm that. Multiple trips to multiple gastroenterologists did not result in anything conclusive either. So I am trying to find out if other CP patients have any experience with the following. Please share your thoughts and observations. Negative answers and any suggestions will be of help as well.
Even very small amount of certain foods (less than 1 gram of anything fatty, salty, spicy or fried) will produce series of symptoms that last several days, namely
- burning pain in epigastric area that irradiates to shoulder blades on the back
- nausea and strong acidic, metallic taste in the mouth
- mental confusion, mind fog and depression
- insomnia or overwhelming daytime drowsiness
- frequent urination
- edema
no medication or any other activity reduces the symptoms. The only way to stop them is to adhere to very strict diet (oatmeal and boiled vegetables) and rest.
Please help.
Andrew
Have you had an MRCP done for diagnosis?
Have you been tested for diabetes or a vitamin B12 deficiency?
Hi, the mind foginess,confusion and depression are symptoms I tend to go through just leading up to me having pancreatitis. Also frequent urination and sleep disturbances also flushing hot and cold. I’ve been told it’s because the blood pressure drops low when I’m becoming unwell. Also I was instructed at this point not to eat or drink as it aggravates the condition for about 48 hours. A mrcp is needed too
The bloods don’t always show up the amalyse or lipase as raises unless you are having an attack they’d show up as normal
It’s best to be checked when the symptoms are in full force
Hope this helps
Hi Linda, thank you for your reply.
After years of unhelpful visits I trust doctors' words less now. I think it is possible that internal secretion of inflamed pancreas gland produces hormonal changes that are responsible for some of our symptoms. I wish there was a medicine or procedure that could elevate or shorten periods of inflammation that cause such havoc in our lives. Strict diet and fasting are the only ones that work for me, but even they take days or weeks to take effect.
Kind regards,
Andrew
Yes, and the results are negative
No, due to financial constraints MRCP is outside of my choices.
You could try taking enzyme supplements, worth a try
Also alcohol aggravates the condition so I’m told
Mines been caused by stomach surgery damage
Keeping a good diary too
I take enzymes and they do help some, but still do not allow me to eat balance diet. Most food that contain protein and fat trigger the symptoms. So malnutrition is a problem. I never drank alcohol and my CP was likely caused by mushroom poisoning 12-15 years ago. I do keep records - but my merry-go-around of such atypical symptoms as mind-fog, confusion, poor concentration, memory loss, colored noise in visual field, ringing in ears, lower back pain, edema, frequency of urination, etc - only add to the perplexity - I've been through this pattern: "minute diet violation-two weeks of symptoms-steady recovery on a diet" so many times, so I know exactly what to expect next, but neither myself no the doctors can make logical sense what is happening and what can be done about it.
Thank you for sharing your thoughts
You may have developed intolerance to something, or it might be disturbance in your gut flora or a viral attack that has not left your body yet. It could be stomach inflammation which lasts for years if strict diet and routine is not followed to heal the gut. Another things is the medications that might be using or have used in the past that has disturbed your digestive system.
I take Forceval for the malnutrition
My dietician from the hospital prescribed them as my weight plummeted and my hair started falling out loads. I hope someone can help you soon
Thank you Linda,
I have similar problem with weight and hair. I take multivitamins but it is hard for me to judge their effectiveness. I will look into Foceval yet significant shortage of fats in my diet is likely to be be more pressing issue than lack of vitamins or minerals. Doctors don't seem to be much of help in my case (10 years of frustration and unreasonable bills without a single remedy) so my main hope at this point is to figure with help of people in similar situation what can be done to manage the illness.
Best wishes
Andrew
I though of the above possibilities and still testing some of them, but it is unlikely to be ordinary intolerance since 95% of food items trigger symptoms. To make things more mysterious - there were instances in the past when all of a sudden I gained ability to eat some of the items I could not eat earlier but would loose this ability later as mysteriously. Antihistamines do not help, so it is unlikely to be an allergy, antibiotics, untifungals or probiotics do not make any noticeable difference either. Endoscopy of stomach did not reveal any pathology. I regularly do not use any medication above those that I occasionally use for diagnostic purposes.
thank you for your suggestions, Human Being.
Hi there,
I totally understand you as I've been through the same, my ct scan came negative, blood works negative, everything is negative but my doc says I've CP, this is so sad bcuz I'm not a smoker nor a drinker...I lost many kilos and I've a hard time gaining weight, I have no pain Anymore, docs are of no help, you should start taking grape seed ex tract with grapefood seed e xtract , your pain will go away, enzymes that I'm taking are over the counter my doc doesn't want to prescribe them because she says that my body will lose the ability to produce enzymes which sounds totally insane to me, I'm left on my own literally. I get loose stools here and there but no pain at all. I'm sick of this because I've been a healthy fit person whole life while my mates been drinking and smoking heavily but they're good. Unfair life.
Hi Andrew
I have just found this and am in the same boat, I needed my gallbladder removing which went 8 weeks ago, I put all of the symptoms down to my faulty gallbladder but nothing has improved. I am still on the oatmeal/boiled veg and soup diet. My main issue is falling asleep all the time especially after food, no odema but my pee smells fruity. I too have been tested for diabetes and liver function, infection and raised inflamation but nothing. Hmmmmmm, I will follow this with interest as I now believe it must be a pancreas issue.
All the very best.
Oh Hi again by the way I don't smoke or drink either. I do get very low with this as myife seems on hold, one normal meal and I feel hideous
(
My gp just looks perplexex, as I spent three years trying to convi ce them my gallbladder was dodgy I don't hold out much hope!!
Did you have pain before? What did you used to cure that pain?
Thank you for reply Nick,
Yep, it has been 11 rough years and future does not promise to be any better unless we find some sort of remedy on our own or by collective effort. I will look into grapefood seed, but I have to be fairly careful what I try, any mistake is causing several days or weeks of moderate pain and significant discomfort - the worst of which are mental states that do not allow me to work or feel like myself - I really hate that part when life and mind get replaced by symptoms. But fighting attitude (if you have energy to master one) is better that succumbing to depression altogether... so we should resist the illness as long as we can - strictly speaking it the only reasonable choice we have.
Look into enzymes issue. You doc might be wrong - it is standard practice to proscribe enzymes to CP patients. I also don't believe it would cause your body to produce enzymes. Millions of people take enzymes as food supplements without ill effect. Many foods contain naturally occurring enzymes as well. Look into medical steadies on the subject and ask people who actually suffer from the illness their opinion.
Hi Joanna,
Yes, it might be. And yes, fruity smell of urine and changed smell of stool are the symptoms that are with me every time I get into acute stage of illness. If your condition is anything like mine then stay away from too much fruits and sweets as well - they will cause worsening of symptoms a couple days later. The only reliable thing is strict diet for at least 2-3 weeks (buckwheat, oatmeal, steamed veggies). I was impatient before and thought that fasting for a few days would change things but it did not. Pancreas (if it is pancreas) needs a week or two of relative rest to get out of acute inflammation stage. This condition is not forgiving and you may need to be very strict with your diet to manage the symptoms.
Best wishes
Hi,
In my experience, most doctors have neither time nor knowledge to deal with complicated cases like hours. If standard lab tests won't clearly point them to the diagnoses, they will not take time - they have to see next patient. They will send you to more tests and other doctors - and the process will repeat until you give up or find solution on your own. If you put additional pressure on your doctors they will talk about stress, anxiety, depression, mental illness, whatever in order not to admit that they don't have time to properly research and figure out what is happening.
On the bright side: if your condition is typical CP, then with strict diet and enzymes you may lead relatively normal life. By the way - see if enzymes help - ask doctor for Creon prescription or find something over the counter with similar potency and take them with each meal (when you start eating) for a couple of weeks to see the effect.