Differential Diagnosis

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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

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  • Posted

    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 

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    • Posted

      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

       

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    • Posted

      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

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    • Posted

      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

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    • Posted

      After thinking about it for a while I consider your observations quite interesting. I've also noticed this curious fact that mental state of depression, irritation and confusion may foretell aggravation of pancreatic symptoms by a day or two. I question your doctor's explanation regarding low blood pressure, since logically it is inflammation of pancreas due to improper diet that causes havoc in classic CP patients, including changes in blood pressure, not the other way around. So there may be some additional aggravating factor that triggers pancreatic symptoms, making our case more complicated and indicating that the culprit for our symptoms may not be malfunction of pancreas alone. I will continue this thread as new topic - for I want to see if other patients have the pattern.

      One more thing regarding it. I've noticed that a day or two prior to the onset of depression (and accompanying problems with mind for and urination frequency) my symptoms are at the lowest. In other words I feel the best just prior to depressive streaks and there is definitive cycle to this merry-go-around of symptoms: several weeks of recovery followed by few days when symptoms are at their lowest followed by depressive streak followed by strong pancreatic symptoms (nausea, pain, general weakness) and then the cycle repeats. Please reply if the pattern sounds familiar.

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  • Posted

    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

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    • Posted

      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

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  • Posted

    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.
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    • Posted

      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.

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  • Posted

    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.

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    • Posted

      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.

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