Hi, I've read many times on the thyroid 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 would come on in the mornings, about an hour or so after eating, and I'd be stuck with it all day. I couldn't figure out what was causing it, but it was very debilitating. I eventually put it down to eating chocolate 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 had 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 it.
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 eggs containing both wheat and dairy.
Anyway, I thought I would come to the experts in wheat protein problems and ask if I am right in suspecting there could 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 was getting associated diarrhoeal issues 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....
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Chancery
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The one thing I know about milk causing problems with Coeliac disease is due to damage of villi in the intestine, as villi recover the digestion of milk is ok again, I don't know about any link between wheat and milk other than that. But as my daughter has a milk sensitivity I found your comments interesting and want to look further into this, thanks
Ah Venetia, thank you. I had read that before about the villi but I'd forgotten it. It's a point, that this could really be a stomach damage issue. I also have antihistamines in my sights as the possible villain here because they are a new med (along with levothyroxine) and I believe they can cause the euphemistic "gastric upset", so it is just possible that they have irritated the stomach lining and now I'm having problems digesting milk. Thanks again - most helpful!
This is one article on the subject of wheat and milk proteins, might be of some interest. Perhaps skip the description of the experiments and go to the discussion and conclusion, unless you are really into science experiments!
Interesting about the A2 milk, I can't tolerate lactose even after 10 years of being gluten free.
A recent cookbook from Hugh FW has recipes using alternatives to wheat and dairy, so not gluten free but would give you some alternatives for breakfast, if you need any.
Many, many thanks, Penel - that is an exceptionally interesting article. I've just skim-read it but it seems to be exactly what I am looking for; it even names the wheat and milk proteins involved in allergic/autoimmune reactions, which should make researching this a whole lot easier. Thanks also for the cookery book rec. Fingers crossed though that I won't need it and this is just a gastritis-type reaction caused by a drug I'm taking!
Thanks again for the article, I think it will be invaluable.
I don't know if/how wheat and milk proteins are related (I'll have to peruse the article Penel linked to), but I can tell you that I lived my whole life not avoiding either wheat or dairy and I thought I was fine. Even after I had an ELISA test done to see if I had any reactions to different foods and the *entire dairy section* of the test came back as definitely reactive, I still didn't believe it. But I was slowly getting worsening IBS and, out of complete frustration, I decided to fast for a weekend. I *immediately* came down with a sinus headache. When that went away I found that my sinuses were better than they'd been in probably years and that I suddenly also had more energy. So I finally started to put some credence in the ELISA test results and have stayed off of it since then (a little over a year now). I also stopped having frequent bouts of D, which I had never realized were being caused by my reaction to casein and whey.
Weirdly, my gluten intolerance doesn't seem to affect my gut they way it does for most people. It took me years to figure out if gluten was really an issue for me. I've finally realized that what I actually have is non-celiac gluten ataxia. I'm still trying to come to grips that that one. The two intolerances affect me in completely different ways though.
I've never heard of the ELISA test, Galixie. I had a look at them online and they seem to be antibody testing - is that right? What exactly did you have tested? Was it a food panel for different foods? If they're being done by post I assume they are finger-prick?
I see from looking at the milk protein allergies that they seem to test IgE for it. I don't even know if such a test would be available on the NHS. I know I had a hell of a fight to get an IgG test because I have partial IgA deficiency. I can just see my doc's face if I ask for an IgE test for milk protein allergy!
No, I think I need to do some research on anti-histamine gut damage first and see if that could be playing a role. Also my A2 milk is about to run out so I will be going back to ordinary milk; I should see in double-quick time if it's that that's the problem!
You say you have gluten ataxia. Did you actually have that diagnosed? I know professor Mario Hava... I can't remember how to spell his (Greek) name... specialises in that, down in Worcester, I think it is. I wanted to go see him but my doc wouldn't do it. I don't have ataxia though, other than from carbamazepine side effects. Do you actually get the 'drunks' and stagger about?
I had the ELISA testing done through a naturopath. She drew the blood at her office and sent it to the lab. The results I received back were in this full color booklet listing all sorts of different foods and whether or not I had a reaction to them. I can't remember the name of the lab, sorry.
As for the gluten ataxia diagnosis, it came about in a very very slow way. First, when my Pernicious Anemia diagnosis came into question, I was tested for celiac disease and mostly tested negative on the blood tests with the only positive being the AGA IgA result. So, after an upper endoscopy with biopsies that didn't show damage, I was told I don't have celiac. I was not told what the one positive result meant. That lead to a long phase of wondering if I had any issues with gluten, because I didn't think I did. I tried twice to have the AGA IgA test rerun but either the lab doesn't do that test anymore or they didn't understand the request so I was unable to get it retested. So I decided to try going gluten free thinking that if I notice some type of change that would answer the question.
I slowly tapered off of gluten and then went completely gluten free. I kept a journal to see if I would notice any difference. I didn't really notice anything so, after almost 4 months, I went back on gluten. I figured that would be pretty definitive. If I had been off of gluten and then went back on it and still didn't notice anything, I would have nothing to worry about from it.
During the first week back on gluten I had some nausea that I could easily contribute to hormones so I kind of discounted that. However, exactly one week after I'd been back on gluten, my dizzy spells returned. After that I also started having pretty bad joint pain. I've had dizzy spells for years so I didn't really connect the dots until I mentioned being dizzy to a friend and her response was "you're always dizzy, aren't you?" and that prompted me to go back through my journal and discover that I actually *hadn't* been dizzy for 4 months. Hm, that seemed like an odd coincidence.
I had been expecting that, if I were gluten intolerant, I'd be having some sort of gut issues (which I wasn't) and I didn't even know that gluten could cause dizzy spells. So I looked it up and discovered that my test results and symptoms seemed to match non-celiac gluten ataxia. So I'm pretty sure that's what it is, but I don't know how I would go about confirming it. When I asked my naturopath if it might be gluten ataxia she said it was "possible" and that avoiding gluten would be a "prudent precaution" for me.
Yeah, I do sometimes have a hard time walking in a straight line. I was so certain last weekend that I looked drunk that I even commented to a friend about it.
After two weeks of being back on gluten, I went back off of it again. It was an abrupt change this time because I didn't want to potentially keep harming myself. I've been back to gluten free for nearly two weeks now and I'm still a little dizzy. I'm hoping that will go away soon. The joint pain has cleared up though.
No need to apologise, Galixie, that was really interesting. That certainly does sound like you might have a gluten issue. In which case you should definitely seek out this chappie:
PROF MARIOS HADJIVASSILIOU
The Sheffield Institute of Gluten-Related Disorders (SIGReD)
Royal Hallamshire Hospital
Telephone: 0114 271 1900
Address: Glossop Road, Sheffield, South Yorkshire, S10 2JF
There, I went and fished out all his details for you. Don't say I'm not good to you. Seriously though, this man is the dope, as the young people say. If you're in England you've got a head start because you can do the request thing. We don't have that in Scotland. I still keep his name in case I get desperate though!
But he specialises in gluten ataxia; it's his thing, and he's the only person the UK who does it. You'd get good testing there, with the right tests, for a change. You go, girl. I think it would be worth the effort.
I'm actually in the US. But maybe I will write to him to ask if there are any specialists in my part of the world that he's aware of, or if he recommends any particular further testing that I could have done locally.
Oh no, Galixie, I managed to be rude (assuming you were in the UK) and cruel all at once (taunting you with a specialist you can't use). I am sorry. But yes, you never know, he might know a good US specialist; I'm sure he's corresponded with some or met them at a conference or two.
I am now going to go and sit in the corner with my dunce's hat on...
Interesting,thanks for sharing,I don't have confirmed CD or wheat intolerance,but I've been trying GF for about 6weeks,only 3weeks 100%. In that time one day I ate something containing gluten by mistake and suffered .my tummy swelled up it felt hard I felt over full had reflux wind burping heartburn and needed the toilet.I also get dizzy spells headaches aches and pains in joints and stomach. which I contributed to hashimotos(I'm starting treatment Monday)I'm now waiting to see the doctors to see if I need a biopsy to test for celiac so am back on gluten until after the tests. Funny but I sort of thought there wouldn't be any reaction to going back on gluten if I didn't have a gluten intolerance or CD. So I'm suprised at my reactions to it. My sister and nephew are celiac confirmed
Oh Pet (hah! that sound like I've gone all Northern) it really does sound like you might be in the running for 'proper coeliac disease', you poor thing. Having relatives with the condition is always a bad sign. On the other hand, you are much better off than all the poor sods who have non-coeliac gluten sensitivity. There's no formal recognition for them and they struggle to get taken seriously. My doctor thinks it's a made up illness, the stuff of quacks! At least if you get a diagnosis you know what to do. Still, it's no fun having the disease - very best of luck with it. X
Thank you, Pvanderaa. I could have sworn I'd read that somewhere but I could see no mention of it, so I thought I must have imagined it. I'm going to do more research on both proteins and see what I can find out.
I get very ill if I have any milk in any form. This reaction has continued 2 years after giving up gluten. I remember reading on the Canadian coeliac sprue website that this was really common as the casein component of milk is similar to gluten and the body rejects it, not to mention lactose and the villi issues. They have changed the Canadian website since then, but it has had some really helpful research links about associated coeliac/gluten sensitivity problems and some really helpful advice...better than coeliac UK.
Hi the problem is that if you are coeliac it damages the gut and makes it "leaky" so other proteins get through it and cause reactions, milk being the most common one followed by soya. This happened to me and for many years I thought milk was my main problem. Three years gluten free and my milk problem has now gone. I found out by accident when prescribed anti biotic that had lactose in and it didn't affect me, it used to give severe probs that would put me in bed in a darkened room for days.
Yes, Maggie, very definitely. I have felt for a LONG time that I have a leaky gut problem. I know it's fashionable to say that, but I've long had problems with things like wheat, soya, dark chocolate and now this odd milk thing, all of which could be protein problems. Plus, of course, my primary illness is trigeminal neuralgia which I feel could be a precursor to Alzheimer's, which is, of course, a protein problem in the brain. The gut/brain barrier is a serious thing indeed, and a leaky gut could be the primary problem causing it!
Hi chancery
There is a theory that autoimmune conditions like CD and Thyroid disease are caused by a leaky gut. By eliminating allergens you can heal the gut and improve or sometimes heal the AI condition.
Hi Kiki. Yes, I've heard that, and it doesn't seem unfeasible to me, certainly. Thanks for the link, that's an interesting site (I've heard of it, but never visited it), but I can't see anything specifically about allergens there. I am probably staring right at it, but if you could point me in the right direction?
With a leaky gut food leaks through into the blood stream ( which it shouldn't do) and the body thinks its foreign and an allergic reaction begins, over time this causes autoimmune diseases like CD.
If you are interested I would buy Dr Sarah's book.
It has a big following in America and dr Sarah is getting her own show. There are Facebook pages for support one has 35,000 members. I am having great fun baking with plantains, coconut flour, cassava root and tigernut flour. Fabulous gluten free grain free alternatives.
Sounds good. I've decided to knuckle down and get to the bottom of my gut issues; I've let them run on now for more than 7 years. I need to start giving my doctors some grief and get some answers, so I may end up having to try/go gluten free, so this will be a perfect resource. Thanks again!
The docs don't always have the answers, I believe food plays a big part in out health or lack of it. I would recommend keeping a food and symptom diary. It can be quite revealing.
My symptoms are so old now, I know them off by heart, Kiki, except for this new one of sore achy bellies. (That's more than one day's pain, not more than one belly!) My problem is I never really know what's relevant, and I'm sure you know 'The Face' - that one the doc pulls when you go in with a list of what he considers "vague symptoms that could be anything". I always like to think it's their job to play detective and put symptoms together, but apparently not. I once made the mistake of telling my doc I was keeping a pain diary (for trigeminal neuralgia). He looked at me as if to say "That's as loony as I expect from you, and don't you DARE bring that in here". I never mentioned it again.
But yes, they do turn up invaluable information sometimes, even if it is after the event!
Ha ha I know that face! It took me 12 months to get to the bottom of my sons illness with his paediatric gastroenterologist she had ruled out coeliac disease! She had put me down as a neurotic mum I'm sure. When you don't know what's causing what elimination can be useful. But you have to be careful you don't restrict too much ( she says eating homemade plantain crackers and liver pate for breakfast).
Perhaps Google Dr Alessio Fasano, zonulin, and intestinal permeability. He writes about the variety of health problems associated with a leaky gut. Problems can be caused by gluten or by bacteria.
Hi Penel. Many thanks for the links. I actually know Alessio Fasano's work well, but I'd never read that Kresser interview before. Very, very interesting, so thanks for that. I hadn't realised before that the problem could be caused by SIBO, so I'm going to look into that now. Thanks again!
Take 2000-6000 mcg VitC ( to bowel tolerance ) before sleep to help prevent SIBO. Dr Myhill gives the advice in her recent book - Sustainable Medicine. As I think I mentioned before that she prefers to call this gut fermentation ! A rose by any other name would smell as sweet
You know, Marz, you and I don't always see eye to eye on alternative therapies, but I think I'm actually going to try this one (I know, amazing!). I read somewhere else that high doses of Vit C are good for constipation, and God knows, nothing in my gut moves any more. It's all just died in there. What have I got to lose, except this bloated, aching gut? However, 6,000 mg would be like 6 big fizzy tablets! I'm guessing there's an easier way of doing this. Have you tried this, and if so, how big a dose are you doing and in what form?
P.S. Obviously, as the world's biggest skeptic, I'll look this up, but is this dangerous? I know big doses of vitamins are potentially dangerous, and I did once damage the nerves in my hands with excess B6, but I also know you are responsible and know your stuff - so safe as houses, or not without potential problems?
The starting dose is 2000mg - increasing upwards to tolerance ! So only 2 fizzy tablets required initially. I take two huge tablets of VitC - by Simply Supplements. The only downside of this supplement is that it contains Magnesium Stearate which is the least helpful of the various magnesiums. Magnesium will also help the constipation ! I might research and change next time - but had two for the price of one Can't be wasteful !!
If you think its dangerous then look at the work of Linus Pauling - and of course his Nobel Prize I seem to remember !
Just as an aside - if you think of my approach as being complimentary ( side by side with other forms of treatment ) then I think it sits better than with the word alternative - which seems to suggest that it is the one and only route. Whatever - my protocol works for hubby and I and is fast spreading into the family. We seem to be the only fit ones
Complementary, it is, Marz. I shall go with the nice, cheap, big fizzy tablets, freely available at Lidl's and Asdas around the £1 mark. At least this will be nice and economical to try. Wish me luck...
Normally, Penel, I'd pooh-pooh that idea, but actually I could see strong herbal remedies working. After all, they chase away everything from spiders to moths, so I would imagine herbal oils could be a deterrent for microbes, Certainly much safer. I'd give them a try before hitting lethal disruptive antibiotics. What have you got to lose? Thanks for the link - I might need that in due course!
I agree that we should go the Paleo way of natural foods. It is too much of a coincidence that so many people are very ill these days. not ill enough to be hospitalised but for years on years live in a very unwell state. This state of being unwell separates people from living their lives and connecting with other people the way we social humans are meant to live. I am changing to the Paleo way and thankfully will be free of drag-me-down non food ingredients. I
I enjoyed reading this topic on and have gained much insight from the posts. Thank you everyone . Reading the ingredient lists of most foods (gluten free included) I m shocked that I do not recognise many of the ingredients in the foods. Have also discovered that "Wheat-based starch hydrolysates such as glucose syrups, dextrose and maltodextrins are found in more than 50% of European processed food. These products contain low amounts of residual gluten, and it has been questioned whether they are safe for coeliac disease patients".
The food industry is more about profit than nutrition. Im done with processed foods and am going the natural way from now on.
Blessings to all and don't forget that medications are all "sickeners" too. The greatest cause of death in the USA is from iatrogenic illnesses which are caused from reactions to medications. that information is from the American Medical Association. Iatrogenic death has become the third leading cause of death in America, surpassing even death by stroke. Depending on the source, between 106,000 and 250,000 people die each year from adverse drugs reactions (ADRs) in hospital settings alone. At its most conservative estimate, death by ADR kills over five times as many people as all illegal drugs combined annually. The prescription drug Vioxx killed an estimated 55,000 people by cardiac arrest alone; this figure does not account for other fatal side effects such as internal bleeding.
Food for thought indeed. I am taking my health and wellbeing back into my own care by staying away from doctors and medications and by giving my body clean foods from now on.
Couldn't agree more, Jen, especially about medications and the problems they cause. I had to take Carbamazepine for the over a year and I ended up with neutropenia, a serious allergic rash, low blood sodium that hospitalised me and hypothyroidism - all caused by the drug. I ended up on three different other medications just to control the side effects of that medication. You can see what a fraught and dangerous road it is.
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