Just hoping anyone here can provide any other probable causes for my mum's stomach issues on the off chance.
Quick history - had little appetite most her life, ate little and then would scoff chocolate and rubbish in the evenings so did not look after her stomach at all. THyroid went a year or two ago and she went gluten free like me and magically her appetite came back and started getting really hungry and eating loads and lots more sensibly although still the chocolate lol! Nutrition was made optimal.
Anyway about three months ago she started getting a few pains here and there. Poops were a little foul smelling and floating which I think indicates high fat content.
Two months ago she could no longer eat at all without being in agony and going to bed for the rest of the day and lost about 3.5 stone in four weeks .
One month ago, I read up on a few things and put her on very restricted diet to see if helped which consisted purely of turkey, fish, vegetables and fruit (minus citrus and deadly nightshades), rice, quinoa and coconut milk and coconut oil basically leaving only things that don't bother anything. She's had no pain since and stopped loosing weight although maybe still a pound or two here and there but only because she hasn't organised something to eat at work sometimes and can't get anything. She has had hemp milk, almond milk and sorghum since without issue also. Juice and squash and sugar itself seem okay too as she's found one dark chocolate bar for a treat that has no milk but does have sugar. She's experimented a few times with other different things and ended up in pain. Milk chocolate definitely the thing that's brings it on fastest and milk next so thought maybe dairy but then other things without dairy also bring it on like potatoes. I've also cooked her chinese a couple of times since which has had chilli, lime, sesame seeds/oil, teeny bit of olive oil, fish/oyster/tamari sauce , garlic, ginger, beef, veggies, rice noodles, sweet potatoes and seems to have no effect. eggs a little funny but egg whites (meringues) def no issues whatsoever. No probs with any fruit/veg with the exception of maybe pineapple once and bananas. Has completely gone off all dairy and doesn't even want to try it as well as bread. Roast dinner with chicken however sets it off with the only difference I see being the potatoes and gravy?
She at first thought it might have been return of polyps and adenomas in her colon she had removed five years back which should have been rechecked after 3 years but wasn't aware. Doc when realising this mistake, gave her an urgent referral to get these checked but this was three months ago and is still waiting!!!! However, unlike before, there is absolutely no sign of any blockage what so ever in that area or past the stomach and doesn't make sense if she can eat as much fish and rice as she wants without issue. She's pooping regularly with no sign of constipation of blockage. Like I said just floating and bad smell before she switched diet but no longer. Pain is deep and dull and spreads up her back and makes her just want to sleep for hours. Any cheating away from that particular diet sets is off although we're still experimenting.
Initially I was convinced it was her gall bladder or possibly even ulcer hence the diet but she has had a quick ultra sound scan which apparently showed everything to be normal and no gall stones or inflammation but not sure how detailed these scans are in this department or whether they can miss them.
She's still awaiting the endoscopy and colonoscopy which has already been cancelled a few times so not sure when that will be.
Anyway need to figure out what's going on so wondering if anyone here has any experience and what steps we might take to work out exactly what it might be as she can't go on like this forever as will not be getting the nutrition she needs and is making her life really difficult and is basically way to skinny and looks like a skeleton.
I'm a bit stuck as to what to do next so any possible suggestions would be greatly appreciated as the docs are being useless as usual and seem unconcerned about her weight loss.
No vomiting or blood of any kind.
Many thanks
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Saggyuk
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Thank you. We are trying but she's still awaiting the initial consultation never mind the actual appointment for the endoscopy etc. They keep cancelling and then taking weeks to reschedule and even the GP is constantly calling them to try and get it sorted. she's been given another appointment on the 1st august so hopefully this one won't be cancelled. I know it needs checking as fully aware of the dangers as sadly my nan is currently stage 4 advanced but I'm convinced it's something different this time with my mum as doesn't have the constipation/diarrhea, vomiting or blood she had last time plus she can eat however much of those particular things as she wants and poops are perfectly formed and regular and only a problem with the other foods??? Really confused
Out of desperation at my continuing Hashi symptoms, I read Izabella Wentz website who knows all there is to know about healing Hashimoto's. I went onto the AIP (auto immune protocol) Diet. aiplifestyle.com/what-is-au...
It's tough going but I knew I had to do it. I made my own bone broth which is actually easy to do. I followed this diet for around 2 months. I discovered that my body/gut does not like any type of grain. After going back to eating sensibly, if I did eat even a small amount of, say, porrige oats, I had a stabbing pain in my small intestine. I've recently read that all grains are classified as grass; cows eat grass but they have three stomachs in order to digest it. so it's hardly surprising really that I discovered my gut hates the stuff.
Hi Marigild. I agree .I followed izabella and am grain and dairy and gluten free. Mostly sugar and caffeine free also . Dairy was the game changer for me . Took a year to see full differences . Had diarrhoea for ages with the change also .
Hi Thank you both, me and my daughter have a proven autoimmune problem with gluten that was determined to be genetic so my mum gave up gluten when her thyroid started going and was doing great with no digestive problems until now. Now she can eat barely nothing and only a few things that won't aggravate anything but seems mostly issue with fats.
GF definitely changed my life and both of theirs and we all say dairy free would be a nightmare compared to gluten but we don't seem to have any similar problem with dairy as all my/our other medical problems reversed or went away simply with gluten free and have no further ongoing issues and perfect poops lol
Chronic pancreatitis maybe? Notoriously hard to see pancreatic problems on scans. As bantam12 said, I’d be pushing to get her bumped up the waiting list.
Perfect thank you - this makes much more sense! It fits perfectly and it just so happens the diet I put her on to prevent bile from being produced just so happens to be exactly what would help prevent the enzymes the pancreas has to make also. The symptoms fit perfectly including the poops and answers the discrepancies between gall bladder etc not quite fitting so many many thanks. It even explains why she's gone crazy for coconut everything and can't get enough of it as apparently this won't induce the enzymes/pancreas at all.
I had looked at this but wrote it off as not quite a good fit but must have been looking at acute pancreatitis rather than chronic.
On the bad side - looks a bummer to diagnose so I can see this is going to be a fight if nothing else is determined. All her blood tests at the mo in regards to liver/kidney, blood count, etc were pretty good (much better than a couple of years ago) but some of the specific vitamins that become low with pancreatitis were dropping although taking supplements (before she couldn't eat) so makes perfect sense.
She's gonna have to give up the fags too it seems as a proven cause apparently lol. Funnily enough, she did quit for some time but started again six months ago!!!
Hi, my husband has chronic pancreatitis and it's straightforward to diagnose with a blood test - this is something they did whenever he turned up at A&E in pain to confirm the diagnosis. Thankfully we haven't been there for years now. It's also easy to treat with digestive enzymes with each meal - stops the pain completely.
Don't rule out lilybut and her idea of iodine. My husband must have been woefully deficient because he took mega doses before reaching sufficiency.
If yr mum has lost loads of weight. So much so that her bones show . I would present at hospital accident and emergency Next time she has stomach pain . Only way to get examinations that keep being cancelled as soon as possible . Unfortunately necessary .she will need to be admitted though . Or they may put your mum on a virtual list . Where she goes home but is on a quicker list
it seems to me that your mum may have an iodine deficiency - has she put on weight ? if she has it will take approx 6 months to put right by adding more iodine into her diet unless they put her on levothyroxine which is an horrendous drug
She's been on Levo a couple of years now so don't think iodine deficiency would explain it plus she's eating fish like twice a day as can eat little else. Actually she's been fine on Levo unlike me - feels better, is converting well and has no side effects. She hasn't put on weight, she's lost 3 stone but thank you
Hi hun, Ive been taking Levo since I was 7 (I had a partial thyroidectomy where they took away nine tenths of my gland) I'm now 56. I was slightly alarmed at reading your post saying that Levo is horrendous. Can you tell my why you think that and what alternative do you recommend?
I think that lilybut was referring mostly to those that do not do well on Levo (T4) either because it doesn't suit them as react to them or their bodies are unable to convert the T4 into the active form of thyroid hormone T3 meaning they remain really unwell. If you feel well on levo and have no other concerns then they probably are fine for you.
Alternatives could be the more traditional version of natural dessicated thyroid (NDT) made from pigs thyroids which some people swear by as the real thing and contains T3 and isn't artificial. The other option would be to add a little T3 (liothyronine) to the T4 (Levo) which some people like myself need and take but this is currently hard to get prescribed in the UK due to high cost and Medical institution stupidity lol. I do get it prescribed still but most have had it taken off them.
Your needs or recommendations would depend upon your situation, symptoms and blood test results once you've corrected all other underlying associated problems such as low vitamin levels
HiSaggyuk, my dear you & your mum are excellent company /help to each other... bravo!! I think for whatever may be the root cause. keep the bile flowing -- drink lemon water. Will look up for links for reference. HANG IN THERE!! Sending love & hope !!!!! 😊🙏💞
I have chronic pancreatitis and the pain u are describing is the same pain as me ! I have made so many diet changes you won’t believe ! I am awaiting my endoscopy on 17th August with ultrasound than ct scan.actually I saw pancreas specialist .he took some bloods to see my iron potassium and liver function than he took my poo sample for digestive enzymes I think. It’s a slow process but I suggest your mom sees GI doctor or any stomach related soecialist.I suspect it is pancreas
Yes, she's waiting for the consultants appointment. Thanks, it does definitely seem to fit. I've just ordered another complete panel of blood tests to see what's changed but will take a look at what other ones can be done to indicate pancreatitis. I hope you feel better soon and the endoscopy goes well. I did one without sedation. Hmmm not sure I'd be up for that again but probably would as I'm a control freak and happy to have left immediately after
I think it would be worth ruling out SIBO (small intesinal bacterial overgrowth) as a possible cause. You can get pains, foul smelling and fatty stools with this. The problem is that not many doctors know about it and the hydrogen breath tests that are done to diagnose it are not 100% accurate. Dr Siebecker is one of the main experts on it and you can get quite a lot of information from her site. siboinfo.com/
Although most sites only mention abdominal pain as one of the symptoms I used to get pains going up my body into my neck with it. Hope she gets a diagnosis and relief soon.
Thank you, will do. She certainly is highly likely to have had intestinal bacterial overgrowth due to her previous diet and deliberated this at first but I thought they need certain things to live themselves and thought it doesn't seem so likely now she ate nothing at all for so long and that was after eating really healthily for a bit so figured the bacteria should have died off by now???? Plus figured that would hurt with all food??? However, not really read up on the subject to be honest so have no idea how long they'd live without food themselves lol. Will have a read so thanks
With SIBO the bacteria are in the wrong place. They normally reside in the colon but they creep into the small intestine because of a number of things not happening properly in the gut that should happen. It's actually very hard to get rid of them and stop it happening again. Dr Jockers has a very good description of the condition and treatment suggestions: drjockers.com/14-strategies...
What happened to your mum sounds very similar to what happened to me. I don't have problems with gluten but I had stomach problems and lost 7 stones in 8 weeks.
To summarise, I have Graves Disease (overactive thyroid). I have had RAI so I now take thyroxine but I still have the Graves antibodies. About three years after my Graves Disease was diagnosed I developed Pernicious Anemia. That almost killed me because I thought I was tired due to poor appetite and lack of exercise. My bloods were so bad that I had to have an iron infusion. In the run up to my diagnosis I lost my appetite. I lost it incrementally and started to have problems with certain foods, specifically meat and other animal proteins. I would have horrible stomach pains, smelly stools, constant indigestion and constant acid reflux. It got so bad that I lost 7 stones overnight and literally looked like my time was up.
Turned out I have another autoimmune problem. I have no stomach acid. It seems my body is killing the cells that make stomach acid.
When I read about your mum's symptoms I thought "wow, that's me!".
Your mum should speak to her doctor and ask about antibody tests. When my bloods came back in the red across the board I had to give more blood so that a full screening could be done. It turned out that I had antibodies for Intrinsic Factor (which is why I have Pernicious Anemia) and I had antibodies for stomach acid cells (I can't remember what it was called). It sounds to me like your mum has either low stomach acid or no stomach acid.
Thanks Hallber - will check this out also as certainly plausible.
She was nutritionally low due to her previous diet but she had done so well to get them back up and sort her eating out after going GF. I've just got a whole panel ordered to see where she's at now to see what need fixing and hoping vit levels etc haven't dropped to badly. Sometimes it's often easier and certainly quicker to just pay for the tests for yourself
I'm feeling a lot better, thank you! I have an excellent GP who I see twice a year for a full check up. I have five different autoimmune disorders and diabetes so my GP is vigilant because she knows that I am likely to develop more autoimmune disorders moving forward. The irony is my illnesses are being so well managed that I don't even feel ill!
My stomach issues are much better. I have been able to start eating animal proteins again. I have to be careful how they are cooked. I cannot eat anything chargrilled. I cannot eat dry or overcooked protein. I cannot eat anything overseasoned or salty. I occasionally have problems with foods giving me indigestion but I avoid them. My GP keeps an eye on my diet because cutting out certain foods isn't good and she is keen that my diet is as nutritious as possible.
Wow - good to hear you have such a good GP - gives me hope! I've settled upon one whom isn't all that great and knowledgeable but at least admits it and just does what I ask lol. Better than what I've had in the past who have been down right dangerous in their lack of knowledge!!
I did have multiple other autoimmune conditions and felt awful but most of them have reversed now to a large degree apart from dead thyroid so feel much better myself.
My mum at least is taking to the changes positively so that's good.
I believe Hallber would be talking about blood tests that identify intrinsic factor antibodies and parietal cell antibodies which are antibodies against various cells in your stomach lining and are used in the diagnosis of pernicious anaemia?
Well I suppose parietal cells are what produce the stomach acid as such so if you have antibodies attacking these cells, you're likely to have problems sooner or later in regards to making stomach acid?
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