UKC

Took a while to work out what exactly was going on but Ive worked out that Im very intolerant to milk proteins (whey and casein) which cause strong immune and emotional reactions. To a lesser degree Im also intolerant to Soya protein and Gluten (wheat protein).

The internet suggests a 'leaky gut' but I dont understand what causes this, why its specific to milk soya and gluten - Im fine with all other foods and proteins like egg, beef, pea.

Can anyone tell me whats going on and if theres anything I can do about it? 

I'd be very wary of internet diagnosis.  https://www.nhs.uk/conditions/leaky-gut-syndrome/

Have you been tested for celiac?  

Have you spoken to your GP?  

You could try a dietician.  https://freelancedietitians.org/dietitians-in-private-practice/

Does, "I've worked out that I'm very intolerant to ......" mean you haven't been to the docs? If not, that is the only way to even get close to sorting this out.

Dave

Do you have an intolerance or an allergy?  

https://www.mayoclinic.org/diseases-conditions/milk-allergy/symptoms-causes...

The coolest explanation I've come across for dairy intolerance is because we're not baby cows, but get an expert diagnosis like others suggest. 

Get to the doctor and get tested for celiac, they do a blood test followed by a camera down the throat if the blood test indicates an issue with gluten. You must continue to eat gluten in reasonable quantities if you want a medical diagnosis. FWIW I'm celiac and also have serious issues with dairy products (not just lactose),

"Leaky gut" is a bit of Internet quackery, mostly.

I'd echo what others have said - get tested for coeliac as a first step (and don't change your diet until you do - this was the mistake I made, and therefore I have no way of knowing if I am coeliac or just allergic to gluten[1]).  It's not uncommon for the damage coeliac causes to cause dairy intolerance as well, and when gluten is stopped this does sometimes repair itself.

Re dairy are you *sure* it's casein and not lactose, e.g. have you tried lactose free milk?

[1] Damn sure I am not going back on it now, it gives me the s**ts, makes me red hot and makes me feel sick and bloated within a short time of having any significant amount of gluten.

Sorry this is off topic, but who is the phantom disliker on here? What in the original question in this thread is there to dislike?

Dave

BTW, if the person responsible reads this please feel free to dislike it.

Book an appointment with your GP to discuss your observations and your options.

jk

Yes, this is a pretty good summary.  There's a whole world of stuff going on in mucosal immunology about the role of gut inflammation in everything from dietary intolerance to metabolic syndrome and type II diabetes (and, weirdly, laminitis in horses) - but there's a vast amount of quackery and nonsense being sold too. 

A friend of mine though she was gluten intolerant, bloating and stomach pains after eating bread, she went to a Chinese herbalist, he told her to slow down her eating, and that's worked for her, she can now eat have her cake and eat it.

If you have Coeliac symptoms then a blood test is normally the first step and if this is positive and endoscopy and biopsy can confirm the diagnosis, you need to be still eating Gluten in the period before the blood test.  However if you are fit and well, not losing weight and have normal bowel movements then its less likely to be Coeliac but could well be an intolerance for which there isn't any useful testing and the general advise would be if it doesn't agree with you don't eat it.

The blood test is quick and simple and I regularly request the test but don't see many positive tests,  Those that are positive have the option of an endoscopy to confirm or to just avoid gluten.  The latter is often the best option and in most areas Gluten free products are no longer prescribed.  Unless there are other symptoms which indicate an endoscopy it's not always done   

In reply to Tringa - I very much disagree with your comment that seeing a doctor is the only way to sort this out, Ive got a fair amount of medical knowledge and there are ways of analysing issues yourself with a methodical scientific approach.

I dont mean offence to any GMPs but they dont know much about these things, they are good generalist doctors but in my experience they refer these sort of things to a dietician. Ive not had any luck with them either.

In reply to Timmd - I agree with this indeed, no other animal continues to drink milk past its infant stage, we are rather odd, however most animals can drink milk but are intolerant to Lactose i.e. the milk sugar that causes gas and diarrhoea. 

In Reply to Marsbar -(I preferred Snickers personally) Yep very sure its not an allergy, there are similarities in terms of the immune response though

In reply to All -

If you want the specifics - I dont have Coeliac disease (tested), but I do have Ulcerative Colitis (since age 22 and Im now 35), however I believe the milk intolerance was prior to this based on recollection of symptoms (acne, skin abscesses, irritability etc), all of which cleared when I stopped having these specific proteins about 5 years ago.

I know its specifically those proteins because I narrowed it down by food type (e.g. milk cheese) then checked with lactose free milk, then checked with exercise supplements i.e whey powder, casein powder etc. 

Just for clarification - Coeliac disease is a gluten sensitive enteropathy, so is specific to the Gluten family, this wouldnt account for milk and soya.

I just cant understand why its so specific to these proteins, I wonder if its something to do with the structure of the molecule that allows it to pass through the mucosa, any biologists out there?

A friend who has been recently diagnosed as coeliac was told that lactose intolerance is  fairly common side effect due to damage to the gut. It should resolve in a year or two once the source of damage (inflammation due to gluten intolerance) is removed. 

To the OP - another vote to get it tested by a medical professional. Leaving it is really not a good idea.

Coeliac absolutely can account for issues digesting other foods, as it causes damage to the villi of the small intestine.  It is VERY common to be lactose intolerant to some extent when you have untreated coeliac, and once gluten is stopped in many cases this resolves itself as you regain the ability to digest things properly as the villi recover.

"I dont mean offence to any GMPs but they dont know much about these things, they are good generalist doctors but in my experience they refer these sort of things to a dietician. Ive not had any luck with them either."

I think most GP's know a good deal however what can be difficult to get across to patients is the tests are often not very useful, the more tests you do the more things you will find, if its relevant or not is a different matter.  A negative Coeliac blood test means you're very unlikely to be coeliac but could well still have fairly awful intolerance symptoms.  People often want to know why they have particular symptoms and this is when words like idiopathic come in handy because "don't know" sounds so much better in Greek. 

Once you have tested for coeliac and excluded a few other things such is Inflammatory bowel disease often the most useful course of action is a food diary and trial of excluding the things that seem to cause issues. 

There are a few private food allergy/ intolerance tests available, most of these are expensive and are about as scientific as reading tea leaves.  I have seen people with several pages of allergies that are found of blood tests.  The fact that there is so little certainty in such things does lead to a certain amount of quackery

I randomly and unexpectedly started having massive issues with milk and soy a couple of years ago and it took several trips to the doctors/gastroenterologist to ID and isolate from the diet. In the end it seems to have been brought on after a bad bout of Norovirus (not sure how this works but I'm not the expert, some kind of gut damage apparently).  

After I cut it out of my diet I dropped weight and felt much healthier, but had massive immune responses every time I accidently ate some milk/soy. 

Two years on I can now tolerate a bit of yoghurt or butter, and the occasional pizza with cheese doesn't cause much bother - although any consistent consumption leads to a return of stronger symptoms. 

I eventually started working with Tom Herbert (@usefulcoach on instagram) who continues to be a massive help in eating to fuel hard training and having a good balanced diet whilst eliminating the bad stuff (milk & soy products). 

Your best bet is to get to the doctor and get referred to a gastroenterologist who will be able to find out what is going on. Be patient and persistent and accept you might need some changes in your diet to stay healthy (I used to be vegetarian). 

Best of luck! 

In reply to IJL99

"Once you have tested for coeliac and excluded a few other things such is Inflammatory bowel disease often the most useful course of action is a food diary and trial of excluding the things that seem to cause issues"

Im way past that, please read my previous posts! 

In reply to Neil Williams

Ive not got Coeliac disease though, ive been checked, and Im not lactose intolerant though Ive already said that

In reply to All

Ive excluded milk and soya from my diet for several years, blood hard thing to do, adding gluten to that exclusion makes eating outside of my own home very awkward. Anyway, nothing has changed, im still intolerant to the same things sadly.

I have had private food allergen testing done and agree with the reading tea leaves comment, load of BS and a waste of money. First time I did it I got a list of high medium and low foods to avoid, I stuck to it fastidiously, retook the test again 9 months later, got a whole different list including things that werent on it the first time!

Ill ask the gastroenterologist I usually see for UC about it at my next appointment, but I honestly dont think they will be able to suggest anything - thats why Im turning to the UKC collective mind once more as there is such a wealth of knowledge here.

because the dauphine was.

A potato related pun, I approve

Have you tried raw milk straight from the cow? I have heard of that working for people with a milk allergy since it turns out not to be the milk you are reacting to.

Alan

Not me, but someone intolerant of Potatoes?

i'll get ma coat...

Big thumbs-up to pretty much all posters here - what a sensible bunch you are!!

I have a few things wrong in my blood tests (spotted when looking for summat else) and after lots more blood tests and supplements, coeliac's now suspected. Look it up on NHS or here is one thing, get near Mumsnet or SM generally and it's mob rule, all sorts of mad advice/selfdiagnosis/voodoo/mistrust of science and medicine.

Am booked in to get cameras shoved in both ends, must eat normally meanwhile (as other posters suggest). OP, GPs are very much generalists with a very tricky job, but they can also refer you to proper experts - possibly a more direct route than wondering if there are any biologists on UKC (though nothing wrong with asking). I think read all posts again, they seem very well-meaning and grounded. Good luck with diagnosis and treatment & a happy life!

You suggestion to someone with an undiagnosed bowel condition is to try unpasteurized milk? Maybe he could try polonium too.

Enough with the quackery. Go to your doctor, listen to his advice. If you don't like it, go to another doctor. If he says the same as the first, whether you like it or not, don't try anything dangerous.

Obviously the OP only asked for an explanation, not a quack solution, but you know where these things end up. Next thing you'll be taking suppositories of rhubarb sticks or something.

but it isn't rhubarb season yet, anyway they work much better up the front bottom, ask Gwyneth.

Gwyneth who, she must be very tart with rhubarb up he front bum.

I do agree to involve your doctor, although I expect it will be you who pins down the oddities of your system with them as a safety net. Try to have good data such the state and frequency of your stool, changes in weight etc for the doctor as bowel cancer is not always a problem just of older people.

As a bit of a technical explanation, you can react to foreign proteins including foods in a variety of ways, these can be dose dependent (intolerance with many difference causes) or be seen with tiny doses (allergy or hypersensitivity which has an immunological cause).

For babies and small children it is the first exposure that starts the process and subsequent exposure then leads to a more extreme response. The body reacts inappropriately as if that food represented a microorganism or parasite, rather than the correct response which is to ignore it and turn off the immune response at the level of the individual protein. Many food allergens in this group may cause sensitisation via the skin and not via the gut. The mouth has some peculiar immunological properties that mean it is unlikely to be the route of sensitisation and then many proteins get altered in the stomach acid and rendered less allergenic. 

As you get older, damage to the gut wall means that proteins can enter through the gaps between cells and not through the cells themselves which act as gatekeepers and sensitisation can occur. Genetics, bowel disease from another cause or antacids can be involved. The microbiome (the bugs that sit around in the bowel) have been shown to be increasingly important and some will make our regulatory cells which control and moderate our reactions thrive, whilst others are very unhelpful. Treatments that reduce diversity such as antibiotics can have a big negative effect. The use of probiotics may have a positive effect.

Also be aware that although you might think, for instance, chicken and fish are very different, the immune system may not and in proven allergy having a good grasp of allergen cross-reactivity can be really useful. 

Hopefully I won't be thrown out of the BSI for such a woolly answer. There are great  nuggets of information on the BSI site such as https://www.immunology.org/public-information/bitesized-immunology/organs-a...

HTH 

Surprised she has room, with the Jade and the herbs.  Crazy but it sells.  

It's probably less to do with allergies and more with simple age; as you age you produce less of the enzymes like lactase, which enable you to process lactose. See a gastroenterologist; they will explain it all for you as they are the top physicians who know about digestion.

I know about lactose intolerance due to lactase deficiency which is pretty normal in many areas of the world, but for the umpteenth time, I'm not lactose intolerant!!!

Thanks for taking the time to write a good reply, I already know that stuff unfortunately, tried probiotics of various types (e.g vsl3) but they made v no noticeable difference. I don't know if there is anywhere that does microbiome sampling, but I don't see how it would help to know, aside from considering a faecal transplant, and even then Im not convinced it would affect protein intolerance.

Ive not quite given up yet, but out of curiosity just see how many things you consume on a daily basis that has milk in it, quite amazing really.

How out of interest do you know it's milk *proteins* (casein?) that are the issue?

Ive already mentioned this but I narrowed it down to milk, then tried lactose free milk, then tried the other components of milk i.e milk fat in the form of ghee, no problem, then the proteins whey and casein which are available in health food / body building supplements as protein isolate powders. Trial and error, elimination and detailed observation and recording of results. I know there can be other minor components in milk such as IGs and possibly antibiotics etc but having tried a few different types of milk such as goat sheep and cow, its pretty clear its just the proteins. 

The same process applied for soya.

No other animal practices dairy farming either, which is the most likely explanation for why many people of Western European descent possess the genetic component that allows for lactase persistence. This 'oddness' is not shared by most of the human race, but then most animals do things that other animals don't do. Suggesting that we don't drink milk because we're not baby cows is rather like suggesting we don't go into space because we're not asteroids.

Fair enough, sounds quite a scientific approach.