Wits end - any similar experiences?

[Rokaab]

The food intolerance is worth thinking on. I wonder, though, at the age of 50+ why I would develop a food intolerence now after never having a single issue with food or diet ever before.

I got my only food intolerance when I was about 25-30, so whilst younger than 50, I wasn't a kid either.

 

[bulkbiker]

Thanks so much for the conversation.

It's a thought (the ulcer thing) but perhaps my description of 'pain' is not correct. There is no traditional pain, just that message that I need food but really need it urgently.

How can I compare it.... like anyone would have if they had not eaten all day and were on their feet all day is how I feel as the baseline all day. that would be bad enough but that exact same feeling intensifies to the point of 'panic stations' as soon as eating commences and the persists for hours until retreating to baseline stage again.
I get extremely distressed about it, not because I am in actual pain in the traditional sense, but because it has removed all pleasure and normality from life. I guess the trouble with all symptoms is that only the person suffering is the one to experience it.

Even reading my own posts, I can see how the medical people I have spoken too are having a tough time with this. It's sounds almost unbelievable...

Tape worm?

The other thing I note is you are eating a lot of carbohydrate.

Have you thought of cutting those out and going for a fat and protein based eating regime.

Start the day with eggs and bacon.
Then more meat without the bread.. no shredded wheat.
Carry on like that and see if you still get the hunger.

 

[Lamont D]

It is a wonder to me that you haven't been to have an endoscopy.
when it is done, it is looking for ulcers of any kind, duodenal issues, hernias, also a sample of your gut bacterium. This is to discover the balance of good bacteria and the bad.
I had a bad bacteria called helicobactor pylori. There are others.
this bacteria, whichever it is, will cause symptoms, of which, any could be experienced.
for years (decades) I knew that my stomach wasn't right. But it wasn't until I was given an endoscopy that it was detected.
I must explain that recent research specialists have tied what is known as the gut brain trigger or gut brain axis has a direct impact on the hormones produced and the symptoms from eating. The signals back and forth, pain, hunger, feelings are derived from the digestive tract, stomach, small intestines. And these are back and forth. From your brains response to food, smell, taste and so on.
Breaking it down logically. A symptom is your brains interpretation of the signal it gets from the stomach. Hunger is a signal which your brain interprets as you need to eat. It is logical that the symptoms should be looked at. Or is the brains interpretation of the symptoms?
Either way, the diagnostic tool of an endoscopy will either rule it out or not.
The anti biotics I took for the helicobactor pylori worked. I don't get stomach problems no more, and of course low carb will help anyway!
It is clear you do need some action for your symptoms.
When I was in pain with my stomach, I just couldn't eat, but we are all different.

 

[lucylocket61]

Hi there - oh no sorry - I don't feel uncomfortable at all - pleased to keep going - I was more worried about how much of your time I am taking up!
The food intolerance is worth thinking on. I wonder, though, at the age of 50+ why I would develop a food intolerence now after never having a single issue with food or diet ever before.

Duodenal Ulcer is another thing I hadn't really thought of - but surely that would have a pain of a different kind? And feeling full quickly - I think my mentioning pain might have been misleading - it is not pain but more an intense feeling of hunger. It is like hunger I have experienced when well (for example when I skipped meal due to work pressure) but multiplied many times in its intensity and, as mentioned, 24/7.

On the drinking water - yes I am drinking a lot of water. I am also suffering from a very dry mouth amongst other things, so I am never far away from a water bottle!

What brought me here in the first place was a belief (before my HSa1c Tests, fasting test and random test) that I had developed Type 1 Diabetes. The hunger, thirst, pins and needles, initial weight loss (fast) and generally feeling awful (plus the history of it in my family) meant I was scared this had happened. Now I am at loss as to what is causing all this unpleasantness. I will take on board all of the suggestions.

Thanks all.

One thing to hold on to is that feeling hungry won't kill you. My brother developed a food intolerance in his 50's, as did one of my close friends. How is your mental health? I am NOT suggesting at all that what you feel is not real, but anxiety etc can also throw in symptoms which can muddy the waters of diagnosis.

What meds are you on? Have they changed? Did anything happen before this started? Please don't worry about taking up my time. It took a while before my brother's food intolerance was found, although I recognize this may not be what is wrong with you.

Have you had proper tests and examination of your body and stomach?

 

[Lamont D]

Other than carbs intolerance, I have had lactose intolerance since very young. If I ate butter, or drank dairy milk, it would soon come back up, projectile vomiting it's called and would make me feel really awful.
I would retch until my stomach emptied bringing up bile. It was burning and the acid was awful.

Don't guess, it happens at all ages.

An intolerance is where it causes illness but won't kill you in the short term.
An allergy may and has serious immediate intervention requirements.

Both should be looked at!

 

[Edwardian Gentleman]

One thing to hold on to is that feeling hungry won't kill you. My brother developed a food intolerance in his 50's, as did one of my close friends. How is your mental health? I am NOT suggesting at all that what you feel is not real, but anxiety etc can also throw in symptoms which can muddy the waters of diagnosis.

What meds are you on? Have they changed? Did anything happen before this started? Please don't worry about taking up my time. It took a while before my brother's food intolerance was found, although I recognize this may not be what is wrong with you.

Have you had proper tests and examination of your body and stomach?

Thanks for your post.

Understand that it food intolerance can occur later in life. My mental health is fine apart from the anxiety this hunger is causing. Its chicken and egg I suppose.

I have been examined by a gastroenterologist, tested negative for celiac too. He has asked me to re-test for enzyme deficiencies which was flagged up in an initial test.

I guess one of the reasons all this is hard to come to terms with is up until this year I have never had one single problem with food or allergies, have never been on any medication, ate a very balanced diet, exercised daily, never smoked, hardly drank, had the perfect BMI (and on and on) - now I feel like physical wreck due to this constant hunger and subsequent poor eating habits.

Anyway - thanks again - I have lots to read here from the all the helpful suggestions.

 

[lucylocket61]

I have been examined by a gastroenterologist

did they do an endoscopy?

 

[Edwardian Gentleman]

did they do an endoscopy?

Not yet. They want to rule out pancreatic issues first apparently (tested low for enzymes- having a second test to confirm).

Whether or not low enzymes (and malabsorption of nutrients) would contribute to this extreme feeling of hunger is unknown - but obviously needs addressing.

 

[Fuggs]

Update on my situation. since last being here, I have seen an endocrinologist and a gastro specialist privately as GP has reached end of ideas.

Had another HSAC1 test all fine, plus a fasting test which was 5.1 so also fine. So it looks like no diabetes causing this - the day before the fasting test I consumed as normal (lots!)...

Gastro specialist is perplexed - is testing for anaemia and pancreatic disorders and malabsorption as a last ditch attempt to see what could be contributing to this.

Meanwhile, it just goes on. The hunger and need to eat is so strong now (getting worse all the time) - I am a grown man who in has never suffered from anything health-wise for decades and was previously fit, healthy and a careful eater, but I am literally in tears with the hunger pains I am experiencing.

I just ate (wolfed down) a large cheese and ham sandwich, crisps, large apple, biscuits (3) for lunch. Afterwards I was literally crying out for more and more food - it is so distressing. I had a large bowl of shredded wheat to try to help the situation (as I often do).... it didn't make an ounce of difference - it was gone in seconds and I was, if anything, suffering from more hunger than before (as is always the case).

All this overeating is not adding any significant weight - I am almost 6 foot and now just over 11 stone. I had been as low as 10 stone 3 pounds earlier this year initially the weight was dropping off me despite the over-eating for some reason. Before all this I was healthy, muscular 12 stone.

I can't adequately put it into words how strong this hunger sensation is now. Perhaps it is what one would feel like if one had walked for 24 or more hours without food - and then imagine that feeling 24/7 and being stronger than ever immediately after eating a massive meal.

My stomach always feels completely, and utterly empty. It doesn't really matter what food is eaten - carbs, veggies, sugar - anything - I am just crying out for more all the time. The only thing I cannot face are very sugary things and alcohol of all types.

I have been told over and over again I do not have diabetes. HSAC1 (I have had 3 over the last 8 months - all fine), random tests (always 4.5-5.5) and now a fasting test (5.1), but the only thing I can liken this to is what I have read (and seen once in my family) what untreated type 1 can do to hunger levels. I have had this now for months.

Sorry to go on, but this (along with a load of other unpleasant symptoms) is driving me (and my poor wife) to despair now. I appreciate all of your helpful suggestions so far. Please note this is not a binge eating thing - this is 24/7.

I keep asking myself if there anyway this could be undiagnosed type 1 diabetes - despite the HSAC1, random and fasting tests.... I have been told in no uncertain terms to drop this idea by my GP but, my goodness, this hunger is so distressing...

Vagas nerve problem perhaps?

Just a thought...

Sent from my SM-G975F using Diabetes Forum mobile app

 

[pixie1]

Thanks for all the info so far. In the best scenario the carbs issue would be the thing... I am craving carbs but would happily ditch them for the rest of my life if it sorted this out.

It is the sheer gnawing hunger that doesn't add up. To be able to wolf down an enormous pasta dish and not feel at all full during and after eating at any stage... so it is not waiting for the subsequent craving to happen - there is no let up.

I am more than happy to move to good fats, nuts, no bread or pasta etc, if that allowed me to feel full.... I know it won't though. I could eat a jumbo bag of mixed nuts, 1lb of cheese and a 5 egg omelette with low fat ham... and still feel hungry and completely empty.

It is getting to the point that I would do anything to feel full or satisfied after eating. I honestly feel like someone who has fasted for 24 hours immediately after eating a large fish and chips with vegatables.... and for the hours that follow. the hollow feeling is awful...

To try and put the feeling into context, imagine if you skipped breakfast and lunch whilst having a very physically demanding day... then by, say 5pm, a superb roast dinner was wafted under your nose! That is how I feel all the time, even after eating the roast :-(

This tends to lead to snacking all day long too.... the only way I know I have had enough is when I have eaten so much my belly is swollen and I feel nauseous ... but even then the hunger urge is still telling me to eat more.

As mentioned my weight is not affected upwards. I lost as stone (I couldn't afford to lose) early this year for no reason and it will not go back on despite my carb-fest :-(

I can see why you are hungry again, I would and anybody here would also. carbohydrates do not fill anyone up, just crash, crash. eat crash.
why eat low fat ham. I think you are not eating enough meat and fats, protein and fat keeps you full longer. Fish and chips with veg, yep you will be hungry. You seem to be on carb overload, I am surprise that you are not sleeping all the time as well. If you carry on, with all those carbs you will eventually tip over, into diabetic range. I wish i knew what I know now, when I had gestiantial diabetes. all I could tolerate was pasta and rice, oops. not a very good idea, whatsoever. Well I did not know that at the time, even thou I was working and looking after my horses. zilch advice on all accounts.
Could always ask for other tests such as C peptides to discount lada/T1.
but try adding fats and protein to your diet and drop those carbs.
good luck and ill continue to read other replies.

 

[pixie1]

@Edwardian Gentleman - when you write about trying to feel full - you are still listing carby and high carb food - not a leg of chicken, roast lamb meat , pork slices, crackling to chew on, (the low-fat ham doesn't cut it in my food-book!), soft cheeses, hard cheeses, fathead pizza (made with almond butter and mozzarella - the singly most filliing thing in my weekly menu).

I had a giggle with @bulkbiker's block of butter, but I can't eat butter on its own... can you? But LOTS of butter on that non-diabetic-you's bread is not bad at all. And we mean butter - NOT marge!

Olives, and lots of cheese if you are dairy-tolerant. ie - fats and proteins.

Salads and coleslaws with low-sugar/no-sugar added mayo and aioli. (The salad won't fill you - but it's a great way to eat the mayo! Which should/could.)

And write it all down in your food diary - which I do believe you should absolutely be keeping for those endo appointments. (Do endos do food though? Probably not, come to think of it...)

It is very hard for we humans to not feel satiated with high healthy fat and protein. I am not convinced from reading your above that you are giving high healthy fat, and high protein a good go. When you do - and if you are still feeling hollow and empty inside - that is very good info for the dietician (which I suspect the endos will direct you to...).

Absolutely, I thought not enough fats, protein,

 

[Claudia 1961]

Hi there - oh no sorry - I don't feel uncomfortable at all - pleased to keep going - I was more worried about how much of your time I am taking up!
The food intolerance is worth thinking on. I wonder, though, at the age of 50+ why I would develop a food intolerence now after never having a single issue with food or diet ever before.

Duodenal Ulcer is another thing I hadn't really thought of - but surely that would have a pain of a different kind? And feeling full quickly - I think my mentioning pain might have been misleading - it is not pain but more an intense feeling of hunger. It is like hunger I have experienced when well (for example when I skipped meal due to work pressure) but multiplied many times in its intensity and, as mentioned, 24/7.

On the drinking water - yes I am drinking a lot of water. I am also suffering from a very dry mouth amongst other things, so I am never far away from a water bottle!

What brought me here in the first place was a belief (before my HSa1c Tests, fasting test and random test) that I had developed Type 1 Diabetes. The hunger, thirst, pins and needles, initial weight loss (fast) and generally feeling awful (plus the history of it in my family) meant I was scared this had happened. Now I am at loss as to what is causing all this unpleasantness. I will take on board all of the suggestions.

Thanks all.

This is of no help but I want to say I really feel for you with the hunger bit. I call it psychohunger and my German language brain calls it HEISSHUNGER. For myself it was after food as my blood sugar levels rose and had me going to the doctors ending up on Metformin. I think this state of hunger is horrible and really affects quality of life. I hope you can keep trying different things and fix it .

 

[Edwardian Gentleman]

This is of no help but I want to say I really feel for you with the hunger bit. I call it psychohunger and my German language brain calls it HEISSHUNGER. For myself it was after food as my blood sugar levels rose and had me going to the doctors ending up on Metformin. I think this state of hunger is horrible and really affects quality of life. I hope you can keep trying different things and fix it .

Thank you - it really is so awful. It is getting worse by the day. Seems to be accumulating, never getting better just more and more hunger all the time.

I write this at my desk in absolute despair I feel so hungry and empty - yet I know I shouldn't be... It is like some form of torture - I am sure if it could be medically induced it could be used to make prisoners confess - I am not even joking here - Im at a point where I would gladly give away all I own if it meant losing this feeling 24/7. I know that sounds extreme but it really is that bad.

Here is a typical day:

I woke up, as usual, in the early hours because my brain and/or body was literally screaming out to eat. As is the norm I am so hungry when I wake that I can hardly think or speak properly. I am incoherent with urgent hunger feelings.

Somehow I manage to wait until 8am (wide awake and in tears from the hunger - and yes, I am a grown man who normally doesn't express emotions often) then had, what would have been in the days prior to this, a normal breakfast - bowl of low sugar cereal, slice of toast, some fruit.

I try not to wolf it down - I fail. The bowl is empty before I even make it from the counter to the fridge. I feel like a pig. I am so unhappy living like this.

I consider calling my GP, 111 or even 999. I have presented at A&E on a prior occasion only to be practically marched out again. Can I even go through that again? My GP is not able to help it seems.

I feel like people will think I am losing my mind. I am not. this is real. It is not a craving, it is not a large appetite it is not boredom.

Once breakfast is eaten the screaming to eat is stronger than before, the feeling of complete and utter emptiness in my stomach (even though it isn't empty) is so, so urgent - this is then with me all day long, progressively getting worse especially after each meal until I finally go to sleep again at the end of the day feeling utterly empty and desperate for more food.... then we repeat it, now it seems, from where we left off.

- - - - - -

I really appreciate all the help and pointers I have received here. I know we cannot diagnose and I appreciate that too. Also understand I talk about this a lot here, the severity of the sensation of hunger I suffer from these days and I apologise here for doing so. It's an outlet of types I suppose.

I am looking into all the suggestions as possible routes to diagnoses. I am being proactive in trying to work out what is going on.

The gastro examinations (and sudden low B12 and Folic for no reason linked to diet) and other tests do seem to suggest malabsorption is playing a part here, but the prospect of enzyme replacement therapy (and thoughts of what could be causing the malabsorption) is scaring me as there is absolutely no guarantee it will make this hunger go away and it requires so many pills.

Also the gastro doctor kept asking me over and over ... are you sure you are not type 1 diabetic... I have been reassured I am not after Random blood tests (the lab ones are always between 4.5 and 5.5), a fasting test (5.1) and HSAC1s well within non-diabetic range.

Oh well - onwards and onwards.

 

[lucylocket61]

Thank you - it really is so awful. It is getting worse by the day. Seems to be accumulating, never getting better just more and more hunger all the time.

I write this at my desk in absolute despair I feel so hungry and empty - yet I know I shouldn't be... It is like some form of torture - I am sure if it could be medically induced it could be used to make prisoners confess - I am not even joking here - Im at a point where I would gladly give away all I own if it meant losing this feeling 24/7. I know that sounds extreme but it really is that bad.

Here is a typical day:

I woke up, as usual, in the early hours because my brain and/or body was literally screaming out to eat. As is the norm I am so hungry when I wake that I can hardly think or speak properly. I am incoherent with urgent hunger feelings.

Somehow I manage to wait until 8am (wide awake and in tears from the hunger - and yes, I am a grown man who normally doesn't express emotions often) then had, what would have been in the days prior to this, a normal breakfast - bowl of low sugar cereal, slice of toast, some fruit.

I try not to wolf it down - I fail. The bowl is empty before I even make it from the counter to the fridge. I feel like a pig. I am so unhappy living like this.

I consider calling my GP, 111 or even 999. I have presented at A&E on a prior occasion only to be practically marched out again. Can I even go through that again? My GP is not able to help it seems.

I feel like people will think I am losing my mind. I am not. this is real. It is not a craving, it is not a large appetite it is not boredom.

Once breakfast is eaten the screaming to eat is stronger than before, the feeling of complete and utter emptiness in my stomach (even though it isn't empty) is so, so urgent - this is then with me all day long, progressively getting worse especially after each meal until I finally go to sleep again at the end of the day feeling utterly empty and desperate for more food.... then we repeat it, now it seems, from where we left off.

- - - - - -

I really appreciate all the help and pointers I have received here. I know we cannot diagnose and I appreciate that too. Also understand I talk about this a lot here, the severity of the sensation of hunger I suffer from these days and I apologise here for doing so. It's an outlet of types I suppose.

I am looking into all the suggestions as possible routes to diagnoses. I am being proactive in trying to work out what is going on.

The gastro examinations (and sudden low B12 and Folic for no reason linked to diet) and other tests do seem to suggest malabsorption is playing a part here, but the prospect of enzyme replacement therapy (and thoughts of what could be causing the malabsorption) is scaring me as there is absolutely no guarantee it will make this hunger go away and it requires so many pills.

Also the gastro doctor kept asking me over and over ... are you sure you are not type 1 diabetic... I have been reassured I am not after Random blood tests (the lab ones are always between 4.5 and 5.5), a fasting test (5.1) and HSAC1s well within non-diabetic range.

Oh well - onwards and onwards.

You need at the very least, an endoscopy.

Psychological conditions are very real, very painful, by the way. Have more physical tests to rule out physical conditions, but please don't dismiss the possibility of a psychological element. People with psychological conditions are not crazy.

 

[Edwardian Gentleman]

You need at the very least, an endoscopy.

Psychological conditions are very real, very painful, by the way. Have more physical tests to rule out physical conditions, but please don't dismiss the possibility of a psychological element. People with psychological conditions are not crazy.

I have another gastro appointment in two weeks where I will be told if I am suffering malabsorbtion and pancreatic tested and enzyme replacements will be discussed. I will ask about an endoscopy then ..

If this symptom continues to accumulate for the next two week - it is now getting worse by the day and just picks up from where it was the night before.... well, I just do not know where I'll be. I have spoken to a physiologist for a few sessions to try to rule out physiological conditions.

Thanks again.

 

[HSSS]

I can’t believe they aren’t doing endoscopy and colonoscopy. I’d really push hard for an explanation of why not if they don’t suggest it this time.

Totally random though but have you been anywhere exotic? The thought of various worms and parasites occurred to me (shudder!)

 

[Edwardian Gentleman]

I can’t believe they are doing endoscopy and colonoscopy. I’d really push hard for an explanation of why not if they don’t suggest it this time.

Totally random though but have you been anywhere exotic? The thought of various worms and parasites occurred to me (shudder!)

Not been away where exotic. Not for a long time.

 

[lucylocket61]

Not been away where exotic. Not for a long time.

I agree with @HSSS . I can't believe they haven't done an endoscopy and colonoscopy. Have you had a CT scan of your abdomen, throat and head to rule out changes?. These are all important before any diagnosis and treatment plan.

What did your psychologist ( I assume that's what you mean, not physiologist) say? A physiologist won't pick up any psychological element.

What country are you in?

 

[Edwardian Gentleman]

UK - and yes psychologist ! I have had an MRI scan on my brain and spine (for other symptoms such as numbness to limbs, pins and needles and severe headaches).

Gastro said he wanted to rule out malabsorption and other stuff before endoscopy and colonoscopy...

 

[Edwardian Gentleman]

Last night, under the usual 9/10 starving feeling, I had dinner of a large (non diabetic friendly!) tuna pasta bake (homemade). Immediately after eating, back to the 10/10+ feeling of hunger and complete emptiness... I won't go over again how incredibly unpleasant this is, living 24/7 and feeling starving all the time.

However my legs which, since this started, have felt numb and tingly most of the time suddenly (20 minutes after eating?) went into a pain mode which I can only describe as feeling like someone had injected acid into my bones and the pain radiated out from the inside. As if my blood was on fire.

This lasted for about 30 minutes. I can still feel the aftermath today. It was so unpleasant I couldn't do anything other than curl up in ball gripping my legs. I couldn't neither walk nor stand without great effort. It passed and I was mobile again. I couldn't sleep at all during the night and suffered night sweats and tingling, not only in my legs, but facially and on my scalp too during most of it.

I wish I knew what was going on. I am so reluctant to go back to my GP (yet again) as all I get is "stress". My word, if I wasn't stressed before, I am now - who wouldn't be experiencing this after 50+ years of excellent health, healthy eating and a very active lifestyle.