Why do you stop both wheat AND dairy for autoimmune issues?

Hi, I've read many times on this forum that going gluten free and dairy free often helps people with autoimmune issues. I have recently, by a bizarre coincidence (A2 milk reduced in my local supermarket) discovered that I might have an issue with milk protein.

I have been afflicted for some weeks with a recurrent sore, swollen belly. It comes on in the mornings, about an hour or so after eating, and I'm stuck with it all day. I couldn't figure out what was causing it, but it's been very debilitating. Buscopan doesn't shift it and Wind-eze style tablets make no impression. Nor do antacids. In short, nothing was helping except mint tea. I put it down to some kind of gastritis caused by eating dark chocolate (my gut's not a fan!) and took chocolate out my diet, with no success - the pain has persisted.

However, recently, after having said A2 milk on a (rare) bowl of breakfast cereal, I suddenly found there was no pain. Just zero, nil, and this pain has been with me for weeks as a constant background 'noise'.

Of course, this is correlation not causation, as other things could be the issue (I had cornflakes, not wheat, for example) but it was so striking I wondered if there was something to milk protein being a problem.

A2 milk is specifically about avoiding indigestible milk proteins, not lactose, so this isn't a lactose issue, but I just wondered if there is a relationship between wheat proteins and milk proteins. If there is, then that would explain a lot, my usual breakfast of toast and an egg containing both wheat and dairy.

Anyway, I thought I would ask here, since so many of you follow gluten and dairy-free diets, if there might be an overall protein issue here. I'd also be grateful for any information on how wheat and dairy proteins are connected, and what might actually be going on. I've had a look on the internet but all the stuff about milk proteins tends to be about allergy in infants, and it's obsessed with diarrhoea. I have a chronic constipation problem (although I have been getting associated diarrhoeal issues with this sore gut, which I won't detail!), which I see occurs in some infants with milk protein allergy, but children seem to grow out of this, rather than the situation I might have here, of developing it in (late!) adulthood.

For the record, in case it's relevant, I am taking Levothyroxine, Loratadine (antihistamine) and Carbamazepine (anticonvulsant).

Thanks in advance for any light you can shed....

67 Replies

  • Chancery, you don't need to quit either unless you are intolerant or sensitive but gluten free may reduce Hashi attacks. Some people develop multiple food intolerances and its not uncommon for them to stop gluten, dairy and sugar. If you've a problem with milk you may not have similar problems with yoghurt, butter, cheese and cream. A 2 week elimination programme for each should show whether or not you do.

  • Thanks, Clutter. Yeah, an elimination diet might be the only way to sort the cream from the chaff (sorry), but I thought I'd try and find out if there is some actual biological similarity between wheat and milk protein before I went down the banning road. I have enough eating problems without giving myself more!

  • Chancery, neat pun :-D

    I suggested elimination because some have sensitivities to lactose but with others its casein. I can't see how there can be similarities between wheat and dairy, but haven't looked into it, so there could be.

  • I know, puns, what can you do? Once they're in your head they're like earworms, you just have to say them out loud and be done with it - get you gone, Satan.

    But I was just given a very interesting medical paper by someone over on the coeliac forum, discussing allergies to wheat and milk, and it seems to be simply that the same antibody, IgE, reacts to the proteins in wheat and milk. I haven't read it thoroughly yet - it's one of these ones that you have to translate as you go, there is so much medical jargonese in it - so that's probably over-simplistic. Basically though, the two seem to be together simply because IgE goes on the rampage in reaction to these food proteins rather than, per se, these proteins being similar.

  • Chancery, makes sense. Are you IgE positive or going on symptoms and reactions?

  • I've no idea, Clutter. Oh that I could find out, but I really can't see my doc testing for IgE reactivity. I had terrible trouble getting IgG tests. I think it took four times, as I recall, more than 6 months of giving blood to get the lab to do them, and my doc had to phone up about three times. SO I'm not seeing IgE going down well, if they even do it at all.

    No, I reckon I'll have to have a lot more concrete evidence of a problem before I get to order an esoteric test. Hang on, I'm saying that, but for all I know it's commonly tested for children's milk allergies. I never even thought of that. Need to go look it up now!

  • I think Dr Myhill's pages are informative - although you've probably looked already....


    My daughters have oatmilk, almond milk, lacto free etc. instead (not Soya)

    J :D

  • Thanks for the link, SR. I hadn't thought of Dr Myhill, so I'll go check that out. I used to drink oat and rice milk when I had gallstones because I couldn't tolerate dairy, so I'm used to it and quite like it, but the A2 is certainly very easy on the gut, so hopefully I won't have to go there!

  • I have exactly the same thing with wheat. I suggest you avoid wheat first

  • Thanks, Jody. I have a long, unhappy and uncertain history with wheat. I have always felt I am 'sensitive' to it, but I have had so many coeliac tests I was in danger of bankrupting the NHS all by myself, and they all proved to be negative. So I should be all clear. How I hate that should word......

  • I've never had a test I just know I'm in trouble if I eat it. Bloated and constipated

  • Me too. You're my soul sister! I've always had a real problem with white flour products. I used to always say that one McDonald's burger and I'd be constipated for four days, and it wasn't an exaggeration. But recently I've felt that wholemeal products, that I've eaten 'safely' for the best part of my adult life (I was raised on snowy white bread!), seem to be irritating me more. Not constipating me more, but causing my stomach digestion problems. As to what's going on though - your guess is as good as mine. I did try running non-coeliac gluten sensitivity past my doctor, but he wasn't having it. He thinks it's a fake illness....

  • So do people with thyroid problems tend to be intolerant or allergic to certain foods, or is there no pattern to these issues? I know we are all individuals ...

  • No, there's no pattern to it, as far as I know, Charlie. The reason they are often suggested to be problematic is because of the coeliac connection, and the increasing evidence for non-coeliac gluten sensitivity. These are all autoimmune reactions of one sort or another and autoimmune diseases come in clusters, so you can see why people make the connection. However, it does have to be said that these may be correlation not causation situations. As yet there is no clear evidence for a diet connection to thyroid issues.

  • I agree that there exists non-coeliac gluten sensitivity.

    A close member of my family (now deceased) was coeliac, and my gluten symptoms are entirely different from hers - gluten aggravates my Parkinson's symptoms, which are normally mild.

  • I assume you've been tested for coeliac though, Judith, and passed as all clear? Because the close relative thing is a red flag, as you doubtless know.

    My sister-in-law has Parkinson's; quite badly deteriorated by now, since she's had it some years. Unfortunately you could never give her any 'advice' about diet; she's not exactly friendly to ideas like that! I come across a lot of Parkinson's research just by chance on my own research travels and it always kind of frustrates me that I can't share it with her, but she gets terribly offended by any discussion of it; I've never been entirely sure why.

    But yes, you do wonder at the relationship between your condition and wheat, don't you? It seems far too big a coincidence that you have a coeliac relative. I only discovered about three days ago that Parkinson's actually starts in the gut and yet doctors never put any emphasis on diet with the condition (or with anything, for that matter!) I do wonder when, if ever, doctors will study nutrition and diet. Even in the middle of the legendary "obesity epidemic" there is till no discussion of including it in their training. What will it take to shift their dinosaur mentality?

  • I am already gluten-free (because I have Hashimoto's and want to do anything to help myself). I thought I was having a problem with dairy as I just felt so continually unwell and nauseous, and was pretty sure it was worse after I'd consumed dairy.

    The private nutritionist I am seeing is more convinced that I have candida and bacterial overgrowth, and I am currently on an anti-candida diet, which has changed my life immeasurably in less than 4 weeks. She made so much sense - the dairy foods I was consuming were "feeding" the baddies.

  • Yeah, Beans, I seem to fall over gut microbiome data in virtually every book I read at the moment. I'm reading The Diet Myth currently and he has a lot on the gut microbiome, which is frankly amazing and scientifically sound. However, you know what they say, 30% of all current medical 'knowledge' will be proven wrong in due course, so the gut microbiome may still have surprises up its sleeve. The fact that it almost certainly appears to cause obesity in some individuals is quite amazing enough, even if we can, sadly, do f-all about it!

  • Hi where can I find anti Candida diet please.


  • There's a lot of information if you google “anti candida diet”. Giving up sugar, which includes fruit, seems to be the main thing.

    My nutritionist has fine-tuned my diet to specifically suit me (gluten-free, vegetarian and intolerances to certain foods), so it isn’t necessarily suitable for everyone. I think most of the diets talk about having probiotics, but I haven’t started on those yet.

  • Yes, the anti-candida is an oldie, but still popular. I have given up added sugar anyway, but I'm not keen on giving up fruit. As I'm currently doing three quarters of the low FODMAPs diet, I'm missing out more than enough stuff already! However, if I don't see improvement, a lot more fruit will have to go too. Boo hoo....

  • I didn’t want to give up anything else either, Chancery. I was gobsmacked when I was told about not eating fruit. However, I was desperate to do something because I was feeling so unwell and getting nowhere with my GP or NHS dietician. I hadn’t got anything else left to lose really, and was prepared to try anything.

  • Had any luck with it so far?

  • Very definitely, although I’ve only been doing it for a couple of months. It’s certainly not all been plain sailing, and I don’t really like feeling that I have to analyse every single symptom I get (which I obviously end up doing, because I keep a food/symptom diary).

    The main reason for seeing the nutritionist was because I had been suffering from horrendous nausea for months and months and months, and nothing I did seemed to help, and doctors had been totally disinterested. It was just so debilitating. The nausea has now all but gone.

    However, the more I learn about all this gut stuff, the more I realise that it is all so darned complicated. Everything impacts on everything else.

    Before seeing the nutritionist, I had made changes to my diet, but none of it seemed to make any difference. I had been reading about candida, low stomach acid, bacterial overgrowth and all sorts, but I just didn’t know how to sort any of it out for me – I didn’t even know if I had any of those problems anyway. I feel so let down that my GP didn’t ever take my nausea and gut problems seriously.

  • Oh, you have no idea how much I sympathise about untangling all the different possibilities for a malfunctioning gut. There are literally SO many things that can be impacting: from what you eat, to how much of it you eat, to bacteria determining what you eat, unbeknownst to you, to actual malfunctioning body parts impacting on how the gut works. And we won't even start on the brain, or mood, or stress, or hormones.

    I reckon that's why docs have developed the 'let's ignore this giant part in the middle of the body where the food goes in' approach. I think they like the heart and the brain because it's nice and simple: "Let's tackle the liver, the kidneys, the pancreas – ANYTHING, as long as it's not the gut, because that's FAR too complicated for us."

    I don't actually blame them for not knowing, or having no cure – that's hardly their fault; it is what it is – what I DO blame them for is pretending that they do know and being arrogant and dismissive of people's symptoms and suffering because they would have to admit the limits of their knowledge. That's unforgivable.

  • Hi Chancery! Nice to hear from you again. My memory is that In celiac, the gluten (or rather the zonulin) causes the difficulty, and destroys the villii on the gut lining so that it can no longer digest milk properly. So it isn't that milk and gluten share a similarity there.

    Now, hmmm. There's a Turkish study which suggests that hypoTs are more likely to be - I think lactose intolerant, not casein. People with autism have been shown in at least two studies at Harvard to have - I think again lactose intolerance - I'd have to double check. I only mention that because you had a symptom overlap at one point, so it might be another straw-in-the-wind clue.

    Dairy in eggs?

    Definitely worth trying a strict exclusion on dairy though.

    Have you looked at SIBO?

  • Hi Asp! Yes, the villi damage is definitely (at least part of) the issue for coeliacs. I actually wondered if the anti-histamines I'm taking may have done that, or something like it. Interesting that hypo patients have lactose intolerance. It may be something related to that, after all. Perhaps A2 milk has less lactose too!

    "Dairy in eggs?" Are you asking about my breakfast? I have butter on toast with the eggs, plus, I put butter on my egg as I go; small quantities, but it's there. I am a fiend for the butter....

    I am also horribly ignorant of what SIBO is, so no, haven't tried it. Off to look it up right now...

  • Small Intestinal Bacteria Overgrowth ! Dr Myhill in her recent book - Sustainable Medicine - prefers to call it gut fermentation. She suggests taking large doses of VitC before sleep - 2-6000mcg. Have been taking 2000 for two weeks and feeling good ! You can then build up to bowel tolerance ! She had videos on her website - talking to Docs et al - and making a lot of sense - promoting her new book. The info came to me in her Newsletter.

    Book is an excellent read by the way....

  • Thanks for that Marz. I might try that kind of C dose at night with the levo and kill two irritating birds with the stone. If achlorydia leads to SIBO, that would make a lot of sense. And if so, improving the achlorydia might depress the nasty little bacteria people bouncing around and partying and farting in my gut every time I eat a carb. Worth a go.

  • Have you found any good hints for improving achlorydia, Asp? I cannot be convinced by the cider vinegar type advice. This is STOMACH ACID - so strong it could strip paint - cider won't cut it!

  • Ah, the good old gut fermentation - I remember that. they've given it a jazzy new name! Since reading up on the gut microbiome (I seem to fall over research on it everywhere these days) I have become a LOT more wary of messing about with my gut's occupants, but I can't see Vit C doing any HARM, so perhaps that one is worth a try. Apparently Lactulose is very good for helping microbiome too. I have that as a laxative - the only one that works for me. Can't be a coincidence????

    P.S. Thanks for the book rec - going to look it up.

  • Also look up the book Brain Maker by David Perlmutter - lots of references too :-)

  • I've actually read that one, Marz. In fact, I think it was you who recommended it to me. But I just couldn't take to it at all. I'm afraid I wasn't convinced by his data and he was too histrionic for me. I mistrust people who are afraid to just let the facts speak for themselves and have to demonise everything.

  • I found his book an excellent read if you are at all interested in helping yourself to find wellness. Thought his pages and pages of references would have appealed to a doubting mind !!

  • Ah, he had plenty of citations for research, Marz, but he was a bit reckless in the deductions he made from it. And, like I say, too colourful in his prose for my liking. If you need to gild the lily then something is usually lacking on the science front!

  • 30 years of Practising Neurology - certainly counts for something in my book !

  • Well, it should, but unfortunately as both my neurologists proved, lots of experience doesn't count for much unless you've got the integrity to go with it.

  • Chancery, I read your thread on GF guerillas as well, and the advice on both boards is spot on.

    What I notice is that you were eating Corn Flakes. Was that GF cornflakes or just Kellogs or a copy?

    This is a general comment about food sensitivity and what I have noticed over nearly 40 years of dealing with it. In his book 'Not all in the Mind' Richard Mackarness commented that food allergy (nowadays called food insensitivity to distinguish from true allergies) is often closely allied to addiction. The food that makes you sickest is the one that you crave the most, and imagine that you cannot do without! We know much more about the brain chemistry nowadays, but its still a general truism.

    And closely related to this phenomenon is the one of a refusal to change habits. If I can't have gluten, I'll make some manufacturer rich by buying some highly processed substitute, which contains similar foods, just with the one ingredient processed out, and lots and lots of lovely horrors to make up for the missing gluten!

    You need to stop focusing on blood tests and ingredients, and start to find out what does and does not agree with you. And you need to eat proper food. That's meat/fish and vegetables. The rest may or may not agree with you, and no blood test will tell you which, you just have to settle down and do an elimination diet.

  • Hi Ruthi, it was a generic, ordinary non-GF cornflake - Sainsbury's probably. They're not my addiction, I hardly ever eat them, or cereal for that matter. It was a rare thing for me to do, but yes, I know the addiction theory of cravings - that you'll crave the food that disagrees with you most. It's a chicken and egg thing though, I always think. Do you crave it because you're addicted to it, or are you addicted to it because you crave it? And let's face it, we all crave junk because it's designed to make us crave it. But no, in this instance, it definitely wouldn't have been the cornflakes. That was what led me to go straight to the milk as the thing that was different.

    I'm not a fan of 'modified' foods generally. I prefer them straight from life, if humanly possible. I'm fortunate that I'm not coeliac, so I don't have to struggle with GF foods. But yes, you definitely do get addicted to foods that are bad for you. I love chocolate, although I don't like the taste (and it makes me sneeze and my eyes water!), and that's PURELY because it lights up my brain like a Xmas tree. Curse it! It's a funny old world....

  • You asked the same question on GF guerillas, so I assumed you were gluten free, and Sainsbury's cornflakes have gluten.

    My comments were really because you seem to be very resistant to the suggestion of exclusion diets. And you eat all sorts of stuff that you know is bad for you, and you know the relationship is unhealthy. We see people who ask the question but don't like the answer quite often on this board. And I think I was just having a weary moment - 'Oh No, another one that refuses to do what they clearly need to do, even while knowing its really the only way'.

    If you go back to the original question, foreign proteins tend to be high on the list of allergens. That's because they are often introduced early in life before the immune system can really cope. So milk is No 1 (bottle feeding) and wheat/gluten is No 2(rusks and baby cereal) on the list! But you can have an inappropriate reaction to almost anything.

    Chocolate is packed full of opiods and stimulants, as well as sugar, of course. It keeps me awake, so its lucky that I am not addicted to it. I was heavily addicted to sugar, but have been very fortunate indeed to have found my cure (a homoeopathic remedy). Because sugar was my No2 problem (after the death of my thyroid gland) everything else is gradually sorting itself out, now that I am no longer a slave to it.

  • You lucky girl! And from a homeopathic medicine too; that just seems so improbable because I am such a sceptic about homeopathy, so unfortunately that won't work for me - in fact, I'm creating a nocebo effect just thinking about it! But I think that's great that you mastered sugar. That's no mean feat. Half the world would pay good money for that - maybe you've found a best selling new business!

    I have a reluctance to do an elimination diet purely because I have a reluctance to do ANY sort of diet unless I have good grounds for doing so. So far I have no good grounds. Dieting of any sort is food restriction and, as such, is very dangerous indeed. Diets have done so much damage in the world, and so much damage to me personally, I am now an anti-diet zealot! Plus, of course, they are fraught with the problem that a good exclusion diet knocks so many baddies out your diet, plus any overeating, that it will make you feel better anyway. How do you know what's really working then? They are not a cure-all for food intolerances, unless you are 'lucky' enough to have a very clear-cut intolerance. But if I had that I wouldn't be here!

    You need never worry about me not liking any answer you are suggesting to a problem - throw them all in there, the more the merrier! But you do need to remember that often people have very good reasons, often from complex medical histories, for not doing something that may be perfect for you. It just isn't the right solution for them.

  • Yup, Kelloggs have barley in em. Nestles new cornflakes don't, but taste the same. No shares in either.

  • Ah, don't tell me, the dreaded barley malt. They love to put that sneaky devil in breakfast cereals.

  • An exclusion diet won't do you any harm because it's short term. And it's not the feeling better that counts. It's the feeliing worse when you re introduce something. I have only done it once. The whole family did the lamb and pears diet when my toddler daughter was suffering terribly. We found her problem foods, and my problem with wheat. Trouble was I so loved my home made bread, and it was generally so inconvenient that it was another thirty years before I finally went GF. Who knows how my health might have been if I had made different choices? You just aren't desperate enough. Or you find more safety in your particular set of beliefs. We each have to find our own path.

    As for homoeopathy, I have seen it work. I have also seen it not work. If only, instead of scepticism, we had some proper research into the mechanism. Then perhaps it could be made to work reliably in more cases. And since it works on animals and babies it would seem you don't need to believe. Certainly I feel it's worth trying, since it doesn't usually come with damaging side effects.

  • Chancery, I definitely agree with Ruthi about doing a proper exclusion diet of some kind if you have problems. I did one many years ago (supposedly pre-Hashimoto’s), under the guidance of a private dietician. I was having such terrible tummy problems, and ended up having to stay in hospital twice. The eventually NHS labelled me with irritable bowel syndrome, which was of no help whatsoever and a rubbish diagnosis. It was a very strict diet and certainly wasn’t easy, but I would have done just about anything at that time, and it clearly identified troublesome foods. The difference it made to my life was amazing.

    I am now seeing a private nutritionist to help me sort out a different set of problems (probably all related to Hashimoto’s), I had nothing to lose by following her advice because I have got nowhere (yet again) with the NHS. I am not on a heavy exclusion diet as such this time, but needed someone to help.

    The more I have learnt, the more I realise that treating our guts properly has such an impact on everything else. If someone had said that to me a few years ago, I would have laughed.

  • Couldn't agree more about the need to treat your gut properly, BM, hence my reluctance to do any sort of diet cutting out food groups (been there, done that, got too many T-shirts), but definitely can't warm to homeopathy. I've read all the pluses and minuses over the years and I'm afraid it just doesn’t satisfy my need for some kind of scientific credibility. It just doesn't have any.

    And I really do hear you regarding the NHS and its fallback position of IBS. I was going to say it would amaze you to know how many people with various complaints get that dumped on them, but I suspect it wouldn't! I imagine you know EXACTLY what they are like with that. You kind of wish you could remove the diagnosis from their lexicons for a day just to watch them floundering – from consultants on high to the lowly GP. Why can't they just say, 'I don't know what's causing this, but I'm gonna try and find out'? Ego, ego, ego…. It's the curse of our (sick) nation.

  • Oh I'm desperate, Ruthi, with a lot hanging in the balance, but I have done elimination diets in the past – twice, as I recall – and I got no clear result from them, unfortunately. Well, other than I should eat less. And that sugar's bad for me. But those things are so basic you hardly need an elimination diet to tell you them!

    I'm one of those tragic people who has been dieting since she was fourteen (when, ironically, it wasn't needed), and I'm good at it, as in I have good willpower and can stick to a diet rigorously for long stretches. Sadly, as soon as they are over, the weight 'sneaks' back and with it comes an extra few pounds every time, plus a ton of emotional and psychological baggage. I reckon that if I had never dieted in the first place I'd be a whole lot smaller than I am now and not so screwed up about food – and research backs that up. You'll understand my reticence in the face of this to start restricting my food, no matter how minimally, especially as it hasn't given me any useful information previously.

    But I couldn't agree more about the homeopathy and the need for rigorous testing. A lot of people swear by it, as you do yourself, but any time it has been scientifically tested it's failed to prove itself. And, of course, personally, I watched my dad pay out for a homeopathic cure for years for a 'stomach ulcer', and it did nothing for him. He did, in fact, die from bowel cancer ultimately – not the greatest advert for the cure! But I think it's great that it works for you, and that you've found your salvation from sugar. That's a treasure more priceless than jewels!

  • Hi Chancery, you asked about achlorydia solutions and I've lost where because I'm so useless at this stuff, but there's a very recent discussion on this on the PA forum where there are two users who report huge help from betain.

    Here's one:

    "My gatroenterologist pooh-poohed my suggestion that achlorhydria might be my problem, even when I told him that drnking 50ml of neat lime juice really helped with my IBS-like symptoms. He was convinced that I had Neuroendocrine Tumors (NETs) that were causing the problem.

    Then I discovered Beataine HCL capsules (I get Swanson's, with pepsin, from Amazon). Ever since I started them (anything from 1 to 3 capsules, depending on the meal) I've had no GI problems at all. Honestly, these have had as dramatic effect on my life as has my B12 supplements. Before I started treating achlorhydria I'd wake up at 3 am at lest twice a week to spend the next 6 hours trotting to and from the loo. Not conducive to feeling alert the rest of the day."

    So I know betaine is weak compared to real stomach acid, but it obviously helps some people. Have just started using it properly and I think it is helping. Achlorydia may link to SIBO, which may link to rosacea - which I seem to be getting. It's all so tiresome, isn't it. So much to research, so little meaningful research available, so difficult to understand and remember.

    You think the social anxiety was a side effect of your med?

    Did you ever work out what was causing the low sodium? That's a sign of Addison's isn't it, or has my memory shorted again?


  • OK Chancery, was reading abt achlorydia again on Wikip (I know.. reliable source, huh? But I have to try to get my head round stuff at a baby level before I can go in deeper).

    And I found this: Deficiencies of these can lead to achlorydia - "Chloride, sodium, potassium, zinc and/or iodine deficiency, as these elements are needed to produce adequate levels of stomach acid (HCl)."

    So your sodium def. might worsen or produce achlorydia.

    And I wonder whether it's one big nasty cycle, I wonder whether achlorydia makes it harder to absorb these too? They're not on the initial list of nutrients which aren't absorbed well, but then that's possibly one more thing which science hasn't yet established - what is the full range of nutrient shortages which achlorydia produces?

    I see that wikiP claims that SIBO can produce achlorydia - and achlorydia SIBO - at least we can conclude there is a very strong association. But if iodine absorb is affected by achlorydia, we might be looking at a possible - emphasise possible - cause for hypothyroidism.

  • Worry not about using Wiki, Asp. Do it myself all the time. You've got to get a good overview before you waste time on getting into the nitty-gritty. After all, if it won't wash at Wiki level, there's no point in wasting energy on it - it's dead in the water.

    But the sodium thing is interesting, isn't it? I've had pervasively low sodium for a long time now. As you know, it landed me in hospital, yet I've never heard of it causing low stomach acid - so thanks a bunch for that avenue - most interesting. And the potential thyroid connection via iodine - the plot thickens. Going to get my nose into this one and see where it leads...

    You've got me worried a bit with your SIBO, especially as you've got someone 'selling' you it, as it were. Promise me you won't go taking some ruthless course of action to kill all your alleged overgrowth. As it is we've all got drastically reduced gut bacteria in the West. It did terrible damage to my gut, getting H. Pylori killed, and the irony was I didn’t even need it done as I didn’t have an ulcer. I now have GERD because of that little foray into killing 'bad bacteria'. Literally, ill-health through misdiagnosis. Promise me you'll just starve out the baddies by going sugar-free and feeding the goodies by drinking Keffir. I worry about you being sold on some fad treatment that will do more harm than good. X

  • Yeah, Asp, I've had Betaine recommended to me a few times, and I have to say, it does generally seem to be well spoken off. I always fall at the last fence with it though because, essentially, it is so weak compared to the real thing. And I always think, "Hang on, it's going in there to be digested itself. How does that help? You might as well eat all acid dinners and the problem will solve itself, by that theory" (mental pictures of tomato and orange salad in vinegar, washed down with sharp wine and a nice lemon sorbet).

    I'm my own worst enemy. But I do have to say out of all the weird cures I've heard for it, Betaine does seem to be the most legit, if my wishy-washiness could pass as a recommendation!

    As for my social anxiety – hell, yes, it was the meds. Big time. I've always had it to some degree, depending on how far out of my comfort zone I am, but it was always manageable. I had a sense of proportion about it. On meds, however, it became a whole new beast. I've had this forcefully underlined recently, coming off meds again. Believe it or not, the same side effects occur coming off as they do going on – I know, go figure, it makes no sense to me either, but no doubt a biochemist could explain it. I've been coming off again, after a long gap, and all hell has broken loose. I am up till the crack of dawn (7:30 am last night) can't get up in the morning, hallucinating, shaking like a leaf, hyper and trying to do everything all at once, but, worse than that, psychotic. It's the only word to describe it. I lie in bed, wide awake, burning hot feet, everything itching, and I feel like this black death has sunk over me. Everything is awful terrible, hellish.

    My doc has NO idea what this feels like. Zero. He just thinks it's a little bit of staggering and some sleepless nights. They have suicide warnings in the pack. You have no idea how real that s**t is. It scares me sometimes when I look back at it and think how close I have come several times. Ah, Carbamazepine is NOT a drug to be messed with…

    P.S. Low sodium is a sign of Addison's? Now that I am going to look up…

  • OK, one more thing then I must defrost my fridge. I've searched and I can't find owt on iodine absorption and SIBO. I did find a decent medical article, but from 2008. It said that in SIBO, which is definitely assoc with low motility, but is not auto immune in itself of course, the brush border can be damaged and villi can be blunted. So hey! That's exciting (aren't I sad) it might have some similar symptoms to celiac then. And indeed, "lactose intolerance is common" - so lactose intolerance with us hypoTs wouldn't necessarily be part of an auto immune issue, it would often be the result of our condition.

    There is a reduction in the absorbative surface in the small intestine - that fits with the hypoglycaemia research which finds we have poorer absorbtion of glucose - fat is poorly absorbed, along with carb and protein.

    So normally SIBO is assoc with weight loss, but not with us, clearly, our hypoT would cloud that picture - we seem to be in the happy position of malnutrition combined with fatness. Yey! And in non hypos it is assoc with diarrhoea, but again that likely would be a confused picture with us.

    Folate can be elevated. Deficiencies of B12, A, D, E, iron and fat soluble vitamins are documented and of thiamine and nicotinadnide (sp, sorry). I have no doubt there are others, and it sounds as though there is a massive overlap with the problems of celiac, without the auto immunity.

    I wonder whether gluten sensitives also often have SIBO?

    Those celiacs whose symptoms do not resolve on a g free diet should exclude SIBO.

    It's v v interesting. The overlap between autoimmune gastritis, h pylori gastritis, celiac, and now SIBO - I think all associated with hypoT - really you have to wonder whether hypoT starts in the gut. And then goes into a vicious cycle so that what starts it off becomes hard to work out.

  • Ah, bless you, you have now given me a superb new catchphrase "Well, I'm going to say this one last time (or any other final demand of your choosing)… then I must defrost my fridge". I think that's the most superb non sequitur I've ever heard!

    But your theories. Your wonderful, fabulous theories. I love 'em. Especially damaged villi, low motility and lactose intolerance (milk protein intolerance – and wheat, for that matter – would be just as likely, I'd imagine. If your gut isn't working right, it would be hard to digest proteins, especially 'toxic' ones like wheat). And poor fat absorption – tick! Had that right through my gallstone era (no fat absorption at all in fact) , but it's still not good post-removal. If I eat a fatty meal a fair amount of it goes right through me. So yes, it's exactly like being coeliac, but without the autoimmunity. That would account for the lack of antibodies in blood tests, yet all the symptoms that ALWAYS feel like coeliac, but negative coeliac tests. It feels like my (our?) bodies are having an 'alllegic' reaction, but really it's just a gut breakdown with a cascading follow on effect.

    I don't know whether to be thrilled at how watertight that is, or depressed because there is NOTHING there you can take to a doctor. On the other hand, you can sort of treat it, in that you can eat and change lifestyle to promote healing of all the issues. Although I'm scuppered on the gallbladder front – that boat has sailed. I can't remember, do you still have yours or are you a victim of cholesterol issues too?

    This is great stuff, Asp. It's the first time I've seen a load of things come together in a half-intelligent and logical picture, with nothing faddy or daft about it. Take an extra squeezy virtual hug; I'm off to think this through! X

  • Thank you for the kind words, Chancery. It is wonderful to have someone who gets the half baked point I am trying to make and doesn't keel over with boredome.

    There are things you can do, though on SIBO. I have severe bloating but I'm not going to the GP to ask for a test because the breath test goes on for ages and I expect it is expensive and not easy to get. I've excluded celiac by giving up gluten for years, I'm neg for h pylori, neg for parietal cell antibodies (though I know that's not necessarily reliable for AIG) so I think I'll try to exclude or prove this one by treating it.

    There is an antibiotic which is specific to intestinal bacteria - hmm. There are probiotics which are specific to this, less effective than the antibiotic. There's the herbal equivalents - cinammon etc, buffered peppermint oil - sounds mumbo jumboish but I will give them a go first. There's the betaine, I think it is possible that lowered hydrochloric acid in the stomach might be a factor in the raised bad bacteria in the small intestine, I'm giving that a good go. Then there's trying to reduce carbs and alcohol and sugar - (oh Lord, I just ate a slice of almond cake). That's hard with gluten already out. There's no way I could manage the peculiar acronym diets they've thought up for this - but I expect I might manage some reduction now I understand the reason.

    I should think a version of the 5:2 approach might help - semi fasting one day a week.

    If you start on this route after your research, let me know how it goes.

    The freezer is looking really good even if I am not.

  • I'm sure you've already found this: ncbi.nlm.nih.gov/pmc/articl...

    but just in case someone in future is looking up SIBO on the search.

    So around 50 per cent of hypoTs may have SIBO. Around 35 percent autoimmune gastritis. Around 5 per cent celiac.....

    Why don't they ask us on diagnosis or on presenting with symptoms about gut symptoms?

  • Very interesting little paper that one, Asp. I loved this: "GI symptoms may be ignored in hypothyroidism". My GI symptoms are ignored, period. Last itme I was at the docs, I asked for Buscopan because of these sore, bloated guts I'm getting. He just gave me them, no questions asked. Part of me thinks that's great because I don't have to fight for things, but another part of me wishes he'd show SOME concern as to what is going on. I've told him right from the get-go that gut issues were my first problem and that they're still with me. He knows I've lost my gallbladder and that I'm chronically constipated. I've told him time without number that I think I have low gut motility. I actually remember my gut motility stopping – true – before I even knew what it was called or that it was a 'thing'. That doctor wasn't interested either. What can you do if they don't take it seriously?

    Thyroid means one thing to doctors, the TSH figures on your blood test. It starts and ends there, and your symptoms are irrelevant. When I told my doc last time I saw him that I felt my overheating, weight gain and inability to lose weight were thyroid issues he said, and I quote, "None of those things are being caused by your thyroid". How he knows that, I do not know, but the great man has spoken. You'll note, incidentally, that he didn’t offer any ideas for what what WAS causing them…

  • NO, NO, BACK AWAY FROM THE ANTIBIOTICS!!!! Seriously though, please don’t take antibiotics – they're what's caused all this trouble in the Western world in the first place. You need to starve those little SIBO mothers out. Don't give them ANY sugar. Go fruit-free even, if you have the strength of character to do it. It killed me when I did it. I was reduced to eating sugar-free jelly just for that fruit taste! But I do have to say I did feel a WHOLE lot better for it. And yeast-free is a given, again if you can live without it. If you're GF though, perhaps giving up yeast would be a breeze for you?

    After that, feed the good bacteria with live yogurt, Kefir (got some in my fridge right now. Lidl's has it during Polish week just now. I've wanted to try it for years. It's consistently recommended as effective, even in scientific papers where probiotics fail). And then you can try the good old probiotics, even if the evidence for them is pretty poor. If you're VERY diligent you can get books like The Diet Myth (reading it right now!) which actually tells you which bacteria are the most effective. But you may need to remortgage your house. These things are NOT cheap. Cinnamon and peppermint oil sound like good bets to me. No harm in them, and a damn sight cheaper.

    No, the sad truth is that giving up the nasties, like sugar and white flours and junk foods, is more effective at delivering a happy gut then any amount of pills and potions. It's much harder work though!

    Fasting isn't a bad idea. Although if you don't snack between meals and only eat three meals a day you're already fasting each day, without the danger of food hang-ups and malnutrition. But I do have to confess that I fasted two or three days a week for a year and a half, unwillingly, but it is very effective for both weight loss and being kind to your gut. So I'd be a hypocrite if I claimed it didn't work. It does. But it is VERY hard to do unless you are very highly motivated. Pain is a great motivator, so it was easy for me!

    And you could NEVER bore me with theories. They're meat and drink to me. In fact I find it depressing that on health forums all people want to talk about is medications and suffering. To me that feels deeply depressing. I want to be rid of medications, not take more of the damn things. If I never saw the inside of the doctor's again, it would be too soon. Medical research is hope to me, a way out. Bring it on!!!

  • Thanks Chancery! The antibiotics for SIBO aren't absorbed by the body, is my understanding, they are just barrel bombs for the nasty little bacteria, but anyway I see that you have to take lots of doses to keep them down, so it ain't a good answer.

    I'm going for large quantities of betaine first, which I guess for them is more like poison gas. If it works, I will let you know.

  • Please do. I've just been reading Alessio Fasano tonight on gut permeability and I see SIBO is a recognised cause, so you could very much be onto something here. I also just discovered tonight from reading an old diary that I've had the same gut issues for more than 7 years. I think maybe the time has come to stop treating this as 'just a fact of life' and make the doctor work for his keep. If I'm right, and all this started because of gut issues then that's where I should really be focussing my efforts. Well overdue, I think. Keep me posted...

  • Hi

    I didn't know what A2 milk was ( been living in North Wales) but just looked it up and I think this link may be useful to others who are not familiar with it, especially compared to other milks ( which I have frequently bought).


    useful chat below,



  • Yes, Sue, it definitely is a better milk if you are having difficulty with wheat/dairy proteins. I obviously was because I find when I have the A2 milk (got it reduced again!) I don't get acid reflux with it like I do with ordinary milk. I don't go for weird faddy milks (or anything!) generally, but for once this one actually was superior.

    I'm on a carb free diet currently, which almost instantly stopped the gut pain. This could mean it has been a carb problem all along (or a wheat/grain problem perhaps), but I am hopeful the change in diet may heal gastric damage, however, I would certainly consider paying more for the A2 milk if I continued to have problems with ordinary milk.

  • Yes, thanks I will try it. I think , having read the article in that link, I do not have a lactose problem so no more La***free. :-) Have you read Dr Kharrazian?

  • I don't think I have, Sue. What do you recommend?

  • Dr Kharrazian - talks about the gut issues associated with thyroid problems. I think there is quite a bit online but he also wrote a book. to be honest I haven't had time to delve into it but what I read initially made total sense. May be something of use to you there. Marz has lots of info from what I can gather too :-)

  • l'll look into him, Sue, thanks - I pick Marz's brain regularly already!

  • I have been gluten and dairy free for over three years and feel hugely improved. In brief, I used to feel ill and tired all the time. Now I normally feel well, and tired some of the time. The medics are astonished how well I am given my conditions! So it's hard to persuade them that I need more than three-monthly B12. (I do use sublingual sprays and tablets).

    On the reason for giving up both gluten and milk protein (casein), is that the molecules are a similar shape. Here's a reference to explain why and how: -


  • That's interesting, Judith, and thanks for the link – very informative! I certainly have problems with Barley. Just a few mouthfuls of Barleycup gives me heartburn of epic proportions. I had to stop drinking it because of the pain levels! Even as a child, I used to pick it out of soup or leave it behind. I've always felt wheat is a problem because I always feel better without it – specifically, clearer-headed, lighter and less carb 'addicted', for want of a better word.

    And I know what you mean about the stinginess with B12. Doctors seem to fear it worse than crack cocaine. They really need a refresher course on it and its safety. You can tell they're not the ones with the problem!

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