I stupidly managed to 'gluten' myself (basically used the wrong toaster), but I haven't got better, its been 2 months now, and I'm in still in quite a bit of pain, and getting a bit worn out.
I stopped all my supplements, Iron etc over a month ago, and started taking PPI's again, but the problem hasn't resolved, so I think I need to see if lactose has become a problem, but know diddly squat about it.
For the past 6-8 months I've been having greek yoghurt for breakfast, as well as a daily latte. I don't like yoghurt, but I need the calcium, and want to avoid taking calcium supplements. I did stop the yoghurt (but not the coffee)for 10 days.......but maybe that wasn't long enough. I don't want to try alternative milks/yoghurts that have calcium added.
Anyway, the questions for those of you with experience is:
Are you able to tolerate lacto free cows milk/yoghurt?
Do you have any recommendations for lactase enzymes, and do they work?
Am I likely to meet resistance if I ask my GP to test for this?
Thank you
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nellie237
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I find lactose free products ok, but they can sometimes still upset my stomach - I think I may have a slight casein intolerance too.
I use Lactojoy enzymes, I think they're quite good. They come in a little tin that makes them look like mints (my dad actually helped himself to a few when I left them on the table once, thinking they were mints). You can only buy them in big packs though, so they are pricey, but I found that other brands often contained gluten, or that they worked out more expensive per tablet.
Hi Nellie237, if lactose is your issue, you would be far better continuing eating Greek yogurt and ditching the latte. There will be little or no lactose in the yogurt because the cultures have fermented it to lactic acid, which gives the yogurt its tangy taste. Whole milk in UK has approximately 4.6g of lactose per 100mls, so a big mug of latte is going to give you a significant amount. I hope this simple switch will help you.
I find that Greek yoghurt has too much lactose for me, but I can eat yoghurt that is specifically low lactose, brands like Arla or Rachel’s Pantry make them. I have made my own low lactose yoghurt, which is fermented for 24 hours, but now eat Sainsburys lactose free yoghurt.
Kefir also has a very low lactose content, so you could always try that for a change.
I would also advise ditching the lattes, try having a little cream in your coffee instead.
Mmmn, I think I am probably going to end up giving up the latte's for good. 😔 I used to be OK with drinking a couple when out for coffee, but about a year before the coeliac dx, I'd started to notice that I could only tolerate 1.
I never thought I'd choose yoghurt over coffee, because I don't like it at all, but FAGE is better than Tesco's lacto free greek, so..........................
If I may suggest you see your doctor. I'm coeliac and have lactose intolerance so drink lactose free milk but no guarantees that at times you get 'glutened' accidentally. As for Coffee that can stimulate the bowel so best avoided or try caffeine free coffee or tea. I'm very careful about my diet but I've had coeliac all my life with other symptoms like DH. Sometimes I feel like rubbish and also they say I have fibromyalgia and osteoporosis. But you must check with your doctor and get him or her to listen to your concerns. I take Adcal which is a high strength Vit C and D and D is needed to help absorb the C. You can get tests for Lactose intolerance so maybe you could ask about that but again it is very important to talk to your doctor. I've worked in the medical profession, now retired, and self diagnoses is not wise if your symptoms are bothering you and ongoing.
Thank you for your wise words. I spoke to my GP a few weeks ago, and had a stool test for H Pylori (negative), and a urine test for UTI (??? infection) so I've also been on 2 courses of antibiotics (finished last week), and waiting on latest test results, before I speak to him again. I expected the antibiotics to make things worse, but they didn't seem to have any impact on my gut, which I am very grateful for.
My DEXA scan put me in the osteopenia bracket, hence the introduction of yoghurt, and jumping down the front stairs like a 5 yr old.
My coffee is caffeine free 90% of the time, and I don't drink tea. I'm not that keen on the lacto free milk............tastes like the long life stuff.
I ache all over..............getting old is rubbish.........roll on spring. 🌸🌸🌸
Certainly try and get your GP to refer you for testing of lactose intolerance - it’s common after a coeliac diagnosis and they should investigate your symptoms.
According to the late Elaine Gottschall book “Breaking the vicious cycle, intestinal health through diet. Diet for...Celiac Disease”; the following advice is given regards lactose.
Only yogurt that has been fermented for at least 24hrs (easy home made recipe given if interested); and the following Cheeses are suitable for avoiding lactose:
In the UK,
Almost all cheese especially Cheddar cheese, Swiss cheese, Gruyere, and Quark.
Avoid liquid milk, cottage cheese, single cream, feta cheese, mozzarella (pizza) cheese, ricotta, processed cheese slices and prepackaged grated cheese.
Elaine advises against lactase enzymes and lactofree in the initial healing stages as some people can still be bothered by it as depending on manufacturing standards.
Personally I tried lactofree milk last year, before elimination diet testing milk intolerance, it didn’t sit right hence total dairy-free diet for three months. I reintroduced dairy with some success after figuring things out regards histamine intolerance. But it’s the whey protein have to watch.
Lactose is in the whey part of milk and so best to avoid any dairy that has whey. Buttermilk. Any cheese or yogurt that hasn’t had the liquid and curds separated or drained off properly basically. Cheese spread a no no as well as soft cheese. Some milk chocolate also has whey and lactose added. And some crisps have lactose and whey added in flavourings.
Fortunately for me, I'm not a big cheese fan, although I do like the odd cheese sarni, and quite frequently open a bag of spinach, rocket and watercress, chop some cheddar on top, a bit of french dressing and some walnuts.
Me making yoghurt 😂🤣🤣. I almost hold my nose to eat it.
I admire your patience.........3 months. I only attempted 10 days. I suppose we learn patience when we don't get better. I'm aiming for 2 weeks this time.
Mmmn, I have wondered about the effectiveness of adding enzymes to cows milk, but hoping its enough for me, I guess.
I've avoided flavoured crisps completely since dx, and eat dark chocolate. I'd hate to have to give that up.
I’ve never been a big cheese fan either! My vice is hot chocolate made with cocoa powder. And I like cream and butter. I drink black coffee so that’s ok. I find coconut milk and hemp milk work in hot drinks but different taste. I eat dark chocolate too, find milk chocolate sickly. Could never drink straight cows milk when young as would throw up 🤢 . I tried 100ml milk recently and tolerate.
I love sardines but can’t eat bones.
I think it’s fallacy have to have dairy for calcium. There’s no hard research. Research shows opposite that heavy milk drinkers tend to have worse bones.
Mineral balance is key and in my opinion it’s more about quality than quantity. Magnesium just as important. And fat soluble vitamins.
You seem to have it covered.
Be weary of too much spinach though as it can hinder calcium absorption as high in oxalates that bind calcium and prevent its absorption. Same with phytates in whole grains such as brown rice and maize flour. Just something that came to mind. I use to eat a lot of spinach before low histamine diet made a difference. It’s high in histamine which can cause pain in sensitive tummy’s. Same as walnuts to note maybe?
Re calcium, Baked beans, maybe? Broccoli? Oranges?
When I had a nutrition consult for eliminating dairy all I got told was there’s enough calcium in leafy greens, lettuce 🥬 and beans.
Hope you feel better soon.
Just read your blood sugar experiment. What a good idea. I’m going to try it. Though maybe not 750ml that’s a lot. I have a glucose monitor. Interesting thanks.
Ah, now you've made me think......I quite like black coffee (when I've run out of milk) maybe I'll try that for a while. I went out for some basic shopping this morning, and its nice and sunny and I really really wanted to stop and get a coffee, but I didn't and it just didn't occur to me.........black coffee. Next time.
I've never been a milk drinker either. I think warm school milk put me off for life..........I can still remember the over-powering stench of the same unwashed/unrinsed cloth that came out if somebody spilled it in class. I used to give mine to somebody else, if the teacher wasn't looking.
"I think it’s fallacy have to have dairy for calcium." That's interesting, and I can understand where that's coming from when it is unnatural/ our bodies are not designed to drink milk as adults "Research shows opposite that heavy milk drinkers tend to have worse bones." A bit like studies showing that people with high cholesterol live longer than those with low cholesterol. For me, these discrepancies in major points just emphasise how little the experts really know, and I guess we are all different.
If I remember correctly spinach used to be touted as a superfood didn't it? - yes its packed full of Iron too, but that doesn't get absorbed very well either does it. I didn't know about the calcium aspect.
I don't know anything about low histamine foods, and I hope that I never have to learn, 'cos that means I'm still struggling.
I did a pint of milk because the guy in the video was quite tall and healthy looking.
Aw I remember the school milk - yuk. It really did make me vomit. I remember my mum writing a note telling the school not to give it to me.
I find it gets easier after a few days once elimination diet kicks in. Taste buds adjust. I prefer black coffee and it tastes funny with any milk in now 😛 . Cocoa needs milk or milk alternative though. Tea works with milk alternatives well.
Take care too
Hi, in the first instance I would check for any ontoward bacterial overgrowth that may have been precipitated by the glutening. You can have a SIBO test on NHS or private (circa £200). The private can be done by post. Also, no harm in have a H-Pylori test also. Both those require antibiotic treatment.
I became allergic to milk, having started out generally being intolerant. That was before there were any lactose free versions available. I have to take calcium tablets, but prior to that I use to use the milk alternatives, and still do from time to time for coffees/lattes. The dairy free cheese isn't so bad either on gluten free pizzas at pizza express.
In terms of testing, I don't think there is a specific test for dairy intolerance, but there is for milk allergy. The normal approach for intolerance is to cut it out for a few weeks, and then reintroduce and see what happens. It may be other proteins in the milk that are not working for you, and not just the lactose. You may have to play around with it.
If you do go down the calcium supplement route, Adcal has been mentioned in a comment here, but that is a poor quality calcium for absorption and does contain 'starch' with no mention of where that starch comes from. You would need to be careful of that if you get it prescribed. The best calcium is citrate and you need the D3, magnesium and K2 to absorb calcium properly. I agree it's the last option you want. Other foods have good calcium content included sardines (with bones), tahini/sesame seed and some of the natural nut butters (not peanut).
SIBO - I know..............and in the middle of this I had to take antibiotics which I'm sure won't have helped my gut flora at all. I had H Pylori tested a couple of weeks ago.
Interesting that you became allergic to milk, after being intolerant. That isn't something I'd considered, but makes sense.
There is a test for intolerance. I watched a youtube video. A guy went to UCH in London. They tested his blood sugar, then gave him 750ml of milk, then re-tested at 20 and 40 mins. If your blood sugar rises OK. If it doesn't, it means that you can't break down the sugars and it ends up fermenting. I tried this at home (my daughter is a type 1 diabetic, so kit on hand) and after 20 mins my blood sugar rose, but by 40mins it had started falling again. So, I think like a lot of people, I produce some lactase, but not enough.
I tried sardines on toast before trying yoghurt. I got halfway through the 2nd slice and had to give up, before it came up..........just yuk
I agree, I'd much rather try the enzymes than calcium supplements. It's all a bit of a balancing act isn't it. I too take D3 & K2.
I'm going to be dreaming of coffee.......like you dream of cheese.
So funny, you & me have totally different taste-buds. I had semi-skimmed out of the fridge, it didn't touch the sides and went down before I could taste it. Results very similar to yours though. I've just realised that I didn't post my results above:- Fasting 6, after 20mins 7.4, after 40 mins 7.2.
My GP is doing a referral back to Gastro and sent me for a load of blood tests on Thurs. The ones that are back are all excellent. Negative for inflammation markers, and I've finally got a reasonable amount of red blood cells, which had been under/on the low end since the kidney thing.
I've got a face to face appointment with my GP on Tuesday........I told him that I expected that it would be a long wait for Gastro and that I would like him to prod me like they used to in the good old days.
I'm beginning to wonder if I'm like an old dog that can't tolerate red meat anymore, and has to be fed on chicken or fish or tripe. I think I'll likely end up with a dx of IBS, which is probably what old dogs have.
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