To not be able to recognise hunger any more? (Coealiac/IBS/something else pain)

[JustMeHello]

I feel like I'm going mad at the moment.

Where do people feel hunger, and what should it feel like?

I'm starting to feel as though I'm gaslighting myself and don't know anything any more. Since about Christmas, I've had really bad pains in my guts which I assumed was IBS, because of a previous IBS diagnosis several years ago. However, previously it was something that came for a few days, then went away. Sometimes I went months without any. Since about Christmas it's been most of the time, much more severe, and not responsive to any of the things that used to work, like peppermint tea or Colpermin or Buscopan. Alongside the pain, which starts in my upper gut/stomach area about an hour after eating, then moves to my lower guts later and often wakes me up at night, I've had diarrhoea and SO much burping it's driving me crazy.

I went to the GP about 3 weeks ago, who immediately said he thought it could be coeliac disease, and has booked me in for loads of tests to check and to rule out other things. I've had blood tests and stool tests, still waiting for results, and am having ultrasounds next week, then potentially cameras if they don't show anything. I can't start eating gluten free til after all that, but when I read about coeliac, all the symptoms match.

In the meantime, I've become really scared of eating, and now struggle to recognise the difference between hunger and pain from whatever is going on. My GP has asked me to log pains and what I'm eating (as I've tried cutting things out in the past and never been able to identify anything specific causing the pain - which if it is gluten, then that makes sense as I hadn't considered that and haven't tried cutting it out). I'm finding it so hard to know if I'm hungry any more, and have been avoiding eating out of fear of more pain, so I'm wondering if some of the pain I'm logging is actually hunger.

Aargh, sorry, that got really long! But does anyone have any tips for telling the difference? (Or any advice having gone through something similar?) I feel shit at the moment.

I'm sorry if I've posted this in the wrong place. I'm not looking for anyone to help diagnose me, just perhaps some ideas as to whether I'm going mad or not. I've forgotten what a normal hunger feeling feels like.

Your GP sounds like they are working things up properly and thoroughly.

I’d suggest focussing on small light snacks regularly; low in fat but high in protein until your ultrasound scan rules out gallstones. Eg Chicken and rice or baked potatoes, beans on plain toast etc; fruit eg bananas…

If you’ve had coeliac antibodies checked in your bloods already, and they are normal, now would be a good time to trial gluten exclusion (ie IBS/ gluten intolerance rather than gluten allergy); you don’t need to be eating gluten for your scans and if they refer for camera tests (with a coeliac biopsy as v rarely you can get antibody negative coeliac) then you’ll be able to go back on gluten for a month before the camera tests.

What age are you and are you losing weight?

FWIW, what you describe (loss of appetite, pain/ fear/ anorexia response) is really common in this scenario. You’re not going mad at all.

Hi, I am not an expert but I didn’t want you to feel ignored.
I can understand that you might not know what you’re experiencing at the moment. Maybe when you get your test results back you’ll find something that helps.
Just wanted you to not feel alone really and wish you good luck x

Thank you. I should have added - I'm 52, and sort of perimenoausal too. I still have the occasional period, which are mostly fine, no issues. I've been having really extreme exhaustion and terrible skin and hair, which I had put down to menopause but which I have read can be symptoms of coeliac. The one reason I hadn't thought of coeliac is that I haven't lost weight at all, if anything I've put it on. I am overweight, but not hugely so, and pretty unfit.

I had my blood tests a week ago and haven't heard anything back yet - I assume that means it might not be coeliac, but I'll ring them tomorrow to chase up.

I had wondered about gallstones...

Interestingly, today I ate a bit differently to normal and did have lighter, smaller snacky things through the day. I had some plain yoghurt with gluten free granola and blueberries mid morning, a cup a soup and some rice cakes at lunch, a cereal bar mid afternoon. I was feeling loads better, but then by early evening I had real pains again, but then only after an hour of feeling sorry for myself did it occur to me that it could be hunger. I had some spicy beans and an egg for dinner after that and feel a bit better... I don't think I've had any gluten today, and do feel better for it.

Have you lost weight? If not, then you are probably eating enough.

I have non-coeliac gluten sensitivity. I found that the more I ate gluten, and therefore the worse I felt, the more disordered my eating became. It has never made sense to me that my body craves what makes it ill. When gluten makes me ill I lose connection with my appetite and my sense of satiety.

That waiting period, while you have to knowingly make yourself ill until diagnosis, is miserable.

Things that have helped me:

Salads. Lots of clean eating. Crunchy, flavoursome food that you have to chew. Chewing and swallowing tells your brain that you have eaten.

Simple food. Nothing too rich or spicy. Definitely make your food enjoyable with salt, pepper, herbs, spices, but nothing challenging like hot spice or sharp vinegar.

Hot drinks: Bouillon, miso, etc. I find that savoury is more soothing than sweet, but if tea does it for you, then tea.

Whatever you eat or drink, always in small amounts and take your time consuming it.

Gaviscon liquid. Always either on an empty stomach or after drinking, never before.

Meditation/mindfulness/hypnotherapy. Some kind of calming mental practice.

Hope you get an answer soon, and feel better soon.

You are doing all the right things- the only thing I’d add, is you are probably not ‘sort of peri-menopause’, you describe text book absolute peri menopause.

Your GP sounds very robust; you keep doing what you are doing, try not to overthink the hunger quandary too much (which can just make things more confusing and create a negative feedback loop re food/ pain)… just ensure you are getting adequate nutrition in. The ultrasound scan (abdo or abdo and pelvis?) will be helpful in ruling things out (your lack of weight loss, in this instance, is medically reassuring). The waiting is frustrating but you’ll get things worked out in the end!

If all the tests come back with no cause then you can have a genuine chat about whether HRT is worth a try (for the other symptoms rather than GI) and ask for referral onwards eg dietician, to work on exclusion diets, fodmap diet etc.

Hang in there! There will be a reason, it’s just takes time to figure it out xxx

FWIW I think gallstones/ bile acid malabsorption are possible contenders.

Thanks everyone. I'll try out the food suggestions.

I have been on HRT previously - my peri symptoms started maybe 5-6 years ago, so the only reason I say 'sort of' peri menopause is that I'm hoping I'm almost at the far end of it. I had HRT for maybe 3 years, and it worked great, then stopped working. They put me on a new kind, which I absolutely hated, and stopped taking - that was perhaps a couple of years ago.

The scans next week are abdo and pelvic, and I can see the note says to check specifically for gallstones as well as general overall scan.

I’m coeliac. You need a biopsy to know for sure - the doctor should refer you to hospital. It involves a camera down the throat, so insist they sedate you for that- then it’s perfectly fine, but you’ll need someone to collect you.

For the biopsy they’ll need to see gluten in your system so don’t give up eating it yet. Ask the GP for a referral.

Being coeliac itself is fine nowadays - plenty of GF options in supermarkets, pubs, restaurants, countries like Italy and Spain are great for it. It’s easier too if you like cooking. Plenty of foods are naturally GF anyway. Join Coeliac U.K.

Keep pushing for tests as if it’s not coeliac you’ll want to rule out other horrors like crohns or colitis.

He hasn't said anything about a biopsy yet, but maybe he's waiting til after the bloods and stool and ultrasound is all back first. If none of them show anything then I'll definitely push for more, as the pain is really interfering with my life at the moment, it wakes me up through the night and is making parts of the day very difficult.

Just throwing out another alternative. It might be a h pylori infection in your stomach too but I am sure your GP will consider that. It can cause ulcers and bloating too. If so, it's treatable with a cocktail of medication and you will make a full recovery from it.

Staying off gluten for a while will help your stomach, regardless of if you have a sensitivity to it, as gluten is hard on it. Make sure you drink plenty of fluids and don't become constipated, although you are having the opposite issue at the moment.

If you are having problems with your gall bladder, then limiting fat and eating plenty of vegetables can help.

Eating live yoghurt or other fermented foods like kefir can help to increase the good bacteria in your gut.

Do you take regular NASIDs, like ibuprofen, naproxen etc? If so it can damage your gut lining, especially if you haven't also been prescribed PPIs to protect it.

Lastly you might have an issue with gut motility or emptying too quickly. This can exacerbate any IBS or can be incorrectly diagnosed as IBS.

You are likely to have an endoscopy as part of the investigation for celiac and many of these are able to be ruled in or out by looking at the stomach and taking biopsies. It's also possible for there to be more than one thing going on.

I've had duodenitis due to naproxen, an allergy to Metformin, a gall bladder infection plus removal, investigation for celiac, IBD in small bowels, and diagnosed IBS, that actually is a functional bowel condition. You aren't going mad, it really difficult to constantly in pain and lower levels do feel very similar to hunger pangs but severe pain that cripples you or bringing up blood needs emergency investigation. Especially if you have a raised temperature.

Sending you lots of good wishes. They will find out what is going on but it can take a fair bit of patience and keep on working with the GP.

If all your tests come back negative amd you're still feeling ill you could try looking into SIBO - small intestinal bacterial overgrowth. The NHS don't routinely test for it, I had to go private but I had a really strong positive, got prescribed the treatment, and recovered in 5 days. Obviously I don't know if that is what is going on for you, but the NHS basically don't seem to know it exists, despite it having really simple tests and treatment. I was so ill I could only eat plain potato, felt sick all the time, horrible pain after eating, burping, all kinds of symptoms. Made a full recovery once I got the proper treatment. I always worry that loads of people with mystery gastro symptoms are missing out on getting treated because the NHS don't test for it. Good luck! <3

Hunger has never felt like pain to me or any of the other symptoms you’re describing. I would just eat 3 healthy meals a day and maybe snacks if you want them in between. You won’t be hungry if you’re eating properly. Anything you feel will then be symptoms. To me, hunger is more a desire for food than a physical feeling.

Thanks everyone.

I think the stool test they did last week was for h pylori, which I think they also tested for a few years ago when I was diagnosed with ibs. I'm assuming it's negative or they'd have contacted me, but I'll try to find out today.

Funnily enough I have had more ibuprofen over the last year. I've had a nasty frozen shoulder which I've mostly been taking paracetamol for, but which I did also take ibuprofen and naproxen and codeine at various points. It's a lot better in recent months, but I've recently had ankle pain so have been taking ibuprofen again, although the increased bowel issues started well before that.

I don't think I'm actually under eating particularly, most days I eat fairly large evening meals, although I rarely eat in the mornings as my symptoms are worst then. I just realise there are days when I put off eating from fear it will make things worse, and I'm getting quite scared to choose foods in case they are the things that set it off. Percy Pigs and Haribo seem fine though, they're currently my snack of choice!

When I was having stomach pain I bought DGL liquorice from Holland &Barrett, I took one 20 minutes before eating twice a day. They really helped.
Also eating an apple is supposed to be good for digestive issues.

After tests I didn’t have coeliac but I did have stomach ulcers. I’m not supposed to take ibuprofen now.

Ask for access to your notes on NHS app, then you can check your blood tests yourself. Our surgery has them back in 2 days max, but if waiting for GP to comment can be longer. It’s helpful to have all the records

I’m peri and have developed intolerance to wheat, dairy and egg.

You don't seem to be considering inflammatory bowel disease (IBD) - the most likely of which in the absence of bleeding would be Crohn's disease. Has your GP done a fecal calprotectin test?

My DD symptoms were: hair/skin looking dull
Pain/toilet trip shortly after eating
Diarrhea
Anemia
Exhaustion

One of the questions they always ask is if the pain wakes you at night btw.

I think you should probably have this in your short list of possibilities so you are mentally prepared.

My sister had a negative blood result for coeliac disease but went on to have a biopsy that showed that she does, indeed, have it. From what she’s told me, I’ve always thought you shouldn’t cut out gluten until you’ve had the investigations as otherwise they can give false negatives.

If you doctor is investigating coeliacs you definitely shouldn’t stop eating gluten right away. The blood test will show if you have antibodies but for the official diagnosis you need an endoscopy (camera down your throat to not you digestive tract) to confirm damage to your intestines. This is important on the NHS to qualify for help with gluten free products. Before an endoscopy for coeliacs you need to be eating gluten for four weeks beforehand.

If they rule out coeliacs then there are also elimination diets you can do to help identify which foods are triggers for you. If your gp works with a nutritionist in their office it can be really helpful to get guidance on this as it can be overwhelming.

I asked the gastroenterologist about this when we still hoped she had coeliac after her negative blood test. He told me it's pretty rare and anyway, not the direction her other bloods were pointing in. She had high platelets, high ESR, mildly high CRP.

I can't get through on the phone yet but checked my nhs app and there is a huge long list of test results, so assume that's everything back. Every one says satisfactory, or normal. Kidney and liver function, thyroid, cancer something, red and white blood cells, no diabetes or anything outside normal. The coeliac one was 0.3, and the grid said 0-4.9 was a definite no, 5-10 possible and 10+ coeliac. I know false negatives are possible, but it seems to be way out of the range for coeliac.

So I suppose it's now wait and see what the scans show next week and then back to the gp to push to check other things.

I haven't eaten gluten in a couple of days and feel a lot better, although not normal, so maybe it is a gluten intolerance.. I'm having some noodles now to see what happens.

Well, not gastric at all! (Unless I have something like a gluten intolerance alongside as well) but actually ovarian cysts! Went for an ultrasound today and a large haemorrhagic cyst very likely. I need to go back for another scan in a couple of months, if it's resolved then it was that. If it hasn't resolved then it's another kind of ovarian cyst and will need taking out. She did say that just because there's that, doesn't mean I'm not also lactose intolerant or gluten intolerant etc, but mostly ruled out gallstones/appendix etc. I suppose it could still be Crohns or diverticulitis or colitis or something, but I definitely have a swollen bloody ovary which is pressing on my intestines or which my intestines are pressing on, so does explain most of my symptoms.

I have been eating gluten free for almost a week, and do feel a lot better, and then had a sandwich today in the hospital because I was really hungry, and hey presto, pain again afterwards, so I'm thinking that going gluten free will be helpful.

In the meantime, I'm off on holiday next week and had to take out specialist medical insurance at 3 times the price because I don't have a definite diagnosis or all clear yet, yay.

Have a great holiday @JustMeHello!