I have recently joined this group and I’m finding the information you share really helpful.
As I’m trying to navigate through this myself, but now I don’t feel so rudderless since finding this group.
I have been eating the same two meals a day for 3 months. Basa fish, kale and mushy peas all in olive oil and dairy free butter.
I react badly to any sugar even fruit. No FODMAP foods. No red meat exception bacon.
No dairy, no spices. No alcohol.
I started myself on b12 injections daily for the last 7 days. Today I am going to start every other day until my symptoms get better. This regime I got from here. So thank you.
I have a feeling I’ve already said all this in a post. Sorry if I have.
Three questions. 1. If anyone else has gut issues what are they. 2. I also have mold toxicity. So when it says keep injecting every other day until symptoms have gone. The symptoms overlap with b12 symtoms. This is how long is a price of string question, but how long do I continue every other day?
3.Dies anyone know the significance of high Calprotectin and low elastase with H Pylori thrown in??
Oh I forgot to mention I do have neurological symptoms legs, hands, and brain.
GP’s won’t help.
Kind regards Linda
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Serenity182
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I applaud you for trying so hard to look after yourself, your self control and determination.
I am, however, very concerned about you because, as I'm sure you know, eating the same foods every day is dangerous and will make you very ill, even if your body would otherwise be healthy.
The wider the variety of foods in your diet, the better, which I am sure you are trying to achieve, alongside your quest for feeling well again. Not only does this supply more of the nutrients you need but it provides them in a range of versions which encourages the diversity of your internal microbiome which supports your metabolism and immune system.
If there are some things you don't tolerate well, see if there are ways of improving your tolerances - eg if you don't have dairy products because you are lactose intolerant, it is possible to get lactase tablets to help with this.
There are often ways of retraining your body to accept small amounts of things that it has been adversely reacting to so just because you have had a reaction doesn't mean you shouldn't retry it in very small amounts after you have had a break from it. A little bit of something occasionally is better than nothing, ever because it will supply some additional nutritients you need.
If you can eat bacon then there should be no reason why you can't eat plain pork. If you "can't" you should look into what it is in the bacon which is helping you as it could mean that the problem isn't with meat at all and was just a coincidental reaction.
If you can eat kale then try other brassicas too but be aware of all of them causing issues with iodine uptake and thyroid problems.
It is vital that you get a range of vegetables, meat, fish, fruit, nuts and seeds to get the whole range of vitamins and minerals that you need to be well and you should be doing everything you can to try to achieve this somehow.
If you are having as severe problems as you suggest you should ask for a referral to see a gastroenterologist as there is likely to be something seriously wrong that needs investigating and proper treatment.
If you carry on as you are you will cause more problems than you will fix.
Please also seek help from a good nutritionist who can guide you in your efforts to getting yourself well. They may well be able to help with the referral to a consultant too. I know things are tricky at the moment with the coronavirus situation but quite a lot can be done over the phone in the initial stages and will at least help you achieve your goal of feeling better.
I started off with a Nutrionist in 2014. She helped with tests. Found non coeliac gluten sensitivity. So got off that.
Then I sought out a functional medical Dr. He helped for a year with the Lyme Disease.
Then I went to Frankfurt to get stem cell treatment 2016.
The found functional medical Dr who was more advanced in his knowledge in London. He found the array of things. Like intolerances to turmeric tapioca and liquorice are the biggest.
He also found from an organic urine test that I had a load of mold metabolites.
Then I found someone who specialises in mold who does the Shoemaker protocol I found On you tube. She’s in Lincoln. So this is who I’m with at the moment.
Getting a letter off to my GP today as they haven’t done any investigation into the low elastase and highish Calprotectin.
If there’s an obstacle to getting well there must be a way around it. I know we have to take responsibility for our own help but there must be some medical intervention somewhere along the line.
Funny how there always seems to be a battle in the NHS.
First a battle with non- coeliac sensitivity which they had one paragraph on they’re screen. So they wouldn’t recognise it. Said I need to see a psychiatrist!!!
Then I had the Lyme disease.... well I was on a hiding to nothing there. He felt under my armpits for enlarged lupus modes and said you don’t have it!! Gosh the ignorance is beyond belief.
Mold.... I didn’t go anywhere near the GP. Didn’t need the stress.
Thank you for saying all the things that I feel! It's maddening, isn't it?
Thank goodness for this group where we can share our experiences. Here and there someone will have a good experience and by sharing their knowledge gained the rest of us can move forward slightly through the barrage of obstacles.
Lupus is a grim thing to deal with and if you have an H. pylori infection plus pancreatic insufficiency and possibly biliary system and other problems, no wonder you feel rough! I was right when I felt there was a lot going on for you and you needed more help - and that was before you kindly shared a bit more of your story with us.
If I can see from a few lines of text on a forum that you need more help, then why, oh why, can't those who are being paid to help, see it and actually try to do something for you?
There's a poor girl in another group who is in a similar situation and now has to be fed with a tube - but they want to just remove the tube and send her home!
Over the years I've become crabby about it and in future if anyone suggests that it's "all in my head" I will suggest that they don't judge me by their standards! While they might not have the mental strength to cope with facing patients with problems, a lack of mental strength is not my problem and it is only thanks to a similarly cool, calm and collected approach as yours, in the face of all their ignorance and blocking, that I'm still alive!
It's very hard to "go it alone" isn't it? There are too many charlatans out there who are prepared to take our money in exchange for their extremist views and a lack of science so I have tried to do my own research. You have done very well to have found the help you have managed to access!
Good luck with getting some positive treatment and please ask more questions - we all learn a lot from each other that way!
You say that you have H. pylori but that the doctors will not help. That is outrageous, a H. pylori infection can cause ulcers, which can be fatal. Demand to see a gastroenterologist.
As deniseinmilden says, you need to eat a balanced diet. Ask your GP for a referral to a dietitian.
One of my daughters got very ill as she coukdnt tolerate eating much at all. She was on the verge if being g tube fed. It affected her thinking everything. She became food phobic as it was associated with severe pain ,nausea,bloating,constipation,diarrhoea ,the list goes on as you will know.
She did use fodmap as some things she cant tolerate at all but others she can in small quantities.
I am no expert but as her mother I made homemade plain kitchen broth. Plain tiny portions for the freezer. Plain veg soups ect. Initially concentrating on the essential amino acids and electrolytes.
Do get expert advice.
My daughter despite several referral s had endoscopys ect saw dieticians.
She was supported in what she was doing but bot actually helped with ways of eating and drinking that she could actually do.
As deniseinmilden says try foods in the same groups that you tolerate
Build on that try new things in a measured amount ti see if tih can cope with it.
By avoiding things you can build an intolerance.
I realise thus is very easy to state but I've seen it.
A nutritionist may help and support as can a hospital dietician.
The psychological effects are enormous.
Perhaps the bacon is tolerated as has a high salt content. ?
My daughter remains diary free and gluten free and fructose free does eat chicken breast .
She now has built to vegetables. Smoothirs. Avocados have been very helpful as has almond milk. Makes her own plain hummus. It is hard work as everything made from scratch. Freezing stuff good.
It has taken a long time years but she is so much healthier for it.
She has discovered 'new' foods that she can eat in small quantities.
She eats alot of seeds and nuts initially ground . Chia for thickening things. Buckwheat.
I know it's not me but this had been my quest when i was delivering 24 frozen foods at a time as a vicious circle if not being able to cook or face food had begun.
Miso a good flavour too.
Get what help is available.
Get every investigation done you can.
Write down 'safe foods' to build from .
A food diary.
Eat little and often and not late.Have lemon juice over food or cider vinegar. Your brain will not work right if starved. SO get a personal friend /person you trust to be accountable to .
You are so right to highlight that with an autoimmune condition it is very easy to cause additional intolerances by cutting something out so the body doesn't recognise it at a later time. It's a b*****r, isn't it!!
H-pylori you need treated with triple course of antibiotics.
I had a lot of gut issues mostly extreme bloating and IBS type symptoms even when eating small amounts of food....I was B12 deficient and after about 3-4 months of weekly injections most of my symptoms went.
I now self inject once every 2 weeks and my eating is way better.
I’m guessing I had low stomach acid which doctors always suspected as high and put me on PPI’s for few years with no improvement, just made my eyesight worse.
My eyesight has also improved with the injections, I’ve been on them nearly 4 years.
I don’t know if this will help but I hope you feel better soon with the injections and a treatment for H pylori.
As already stated by others who I’ve learnt a lot from continue with injections 3 times weekly until ‘no further improvement’ in your symptoms which can take a while but you’ll surely get there.
You normally have Folate and Iron absorption issues if you have B12 problems so best to get them checked out.
Also vitamin D is a problem for many so you may need to add that and a good broad spectrum multivitamin daily helps with the rest.
I’m not a medical professional or medically trained, just going by the knowledge and info from this site I have gained over the last 4 years and based on my own experience and others experiences shared on here which has helped me greatly that’s to the wonderful people on this site.
I hope this helps.
Wishing you well.
As others have said you MUST get your HPylori infection treated first. It can cause low B12 and stomach ulcers. The treatment is generally very effective. I had it before I was diagnosed with PA.
What was your Calprotectin score? This is an indication of inflammation in the stomach. It is used to differentiate IBD from other stomach issues. Mine was 432 (under 50 is normal) but I didn’t have UC or Crohn’s. Through treatment (diet and antimicrobials) it is now in the indeterminate range (which is good got me). Stomach inflammation can cause a huge range of symptoms from pain in the stomach to bloating, wind, flatulence, aches and pains and joint pain.
High calprotectin is not, however, just caused by low acid in the stomach which is caused by PA, it is also caused Byblos elastase, which you have been diagnosed with.
It is interesting to note the apparent rising number of people diagnosed with both PA and low elastase. The latter means your pancreas is not functioning properly and is not producing enough digestive enzymes for you to digest your food properly. This will lead to weight loss as you will not absorb all the nutrients in your food and it could lead to a loss of your fat soluble vitamins (A, D, E and K).
You need to know your elastase score l. Below 100 is severe and between 100 and 200 is moderate. In either case you will need pancreatic enzyme replacement therapy; these are tablets which replace the enzymes you are not producing and must be taken with every meal or snack. They are prescription only. I also suggest you get a MRCP scan to check your pancreas and biliary tree.
You have a serious set of things malfunctioning with your digestive system and you need to know from your doctors how they’re treating them. They cannot be left without treatment. I along with a few others on here have had ALL of your issues (and still have them) so feel free to ask for advice.
It's really good to know you are here for us Martin - your knowledge is phenomenal. Thank you for your help.
I was going to say about the pancreas and biliary system, etc, but you have done it here - superb. Your knowledge confirms my situation and it's reassuring to hear what you say as all my investigations have been put on hold while they try to cope with the pandemic. I have free access to Creon 25,000 now and use it as I can judge.
Do you know about SIBO too? It appears that is another thing that isn't doing me any favours and antibiotics (so far for other things) seem to be more effective at improving my malabsorbtion than the Creon so I'm looking forward to being able to resume the investigation.
Denise that’s very kind of you to say. I have learned through my own personal situation and disease state and s very good gastro. I have had SIBO too and it is the combination of pancreatic insufficiency and low acid which makes differed more susceptible. In general it appears that PA only patients tend to suffer less with this. I used rifixamin prescribed free on the NHS but I think it has come back. I’m now taking antimicrobials and they definitely seem to have settled things down and I can switch them on and off as needed.
It’s a bit of a battle and I’m learning as I go. Hopefully we will all continue to improve. Take care.
I also recently joined this forum and the help, support and advice that people give is really useful.
I'm curious as to what type of mushy peas are you eating? Do you make your own? The reason why I ask this is that I have a bad reaction to tinned mushy peas; nausea and dizziness, head ache and wheeziness. So although not all gut issues it certainly made me feel very sickly! (It took me a few days to recover)
I was puzzled why I'd reacted like that but then I looked up the ingredients; E133 brilliant blue and found what was causing me to feel so unwell. So the only ones I can eat are the boxed dry ones that you soak overnight.
Apologies for focusing in on the mushy peas but just in case they could be adding to your 'gut issues' thought it would be an idea for me to mention it.
I use batchelors. They were fine for the first couple of months. They do have E101 and E133 as you say actually plus sugar.
I’m not sure if I’m reacting to the so called dairy free butter?? Whose knows. I used to be able to pinpoint stuff that would cause reactions and avoid them.
I’ve been trying at this for 15 yrs. Done SCD specific carbohydrate diet, elimination diet,
Low amylose, low FODMAP, low mold, bone broth. Anyway you get my drift.
Maybe I should ditch these.
Yesterday I did try a full dinner. Runner beans, thin beans, carrots and chicken.
Tried making a red wine jus. It was ok but it has a teaspoon of sugar in it. It was nice to have different food. I think I’d become so fearful of trying different things because the nights were so difficult. 6 paracetamol up every 2 hrs or so.
But I have to say since starting b12 inj( had 8 Injections so far) I didn’t find the reaction so bad last night.
Only had 4 paracetamol. Up 3 x
So things are on the up.
I have found that if I go walking, max i’ve done is 4 miles, which I love doing I get quite a lot of pain again in the night.
You wouldn’t think I climbed Kilimanjaro in 2015 would you.
Never give up is my motto. I’ll keep on till I’m as well as I can be.
Thank you for those on here that try to help so much.
That's great that you tried a full dinner. I know how horrible it feels being scared to eat something for fear of a reaction; although as others have said it's not good to have such a limited diet.
I was unwell a few years ago (severe/uncontrollable digestive issues, nausea, 'eggy' belching, bad headache and wheezing) after eating something that I didn't think could cause such a reaction.
After much internet searching later I found that I'd eaten too many foods high in sulphites; two glasses of concentrated orange juice and a bag of trail mix (nuts and raisins etc) The doctor was no help whatsoever...
Afterwards for around six weeks I could only face baked potato and olive oil. Consequently I did lose weight and generally did feel hungry but was scared to eat anything else.
I always read food labels it's something I've done for a long time. So I now try to avoid anything with sulphites which is difficult as a lot of the things I like to eat contain them; (wine, cider for example!!) At least I know what to expect if I do consume something that is sulphited; although I do mostly cook from scratch which makes it a lot easier.
It was mentioned above about having lemon or lime juice or cider vinegar with food. I did try this over the weekend with fresh lemon juice (concentrated is highly sulphited!) it really helped with heartburn that I get before or after meals.
The people on this forum are really knowledgeable and have helped me considerably in only the few weeks I have been on here.
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