How many of you have milk problems?

As well as being a coeliac I discovered I am allergic to milk and now have excluded that (It is an allergy rather than an intolerance and not just limited to lactose, milk proteins too).

I get frustrated as many of the so called free-from products may be free from milk or gluten but often not both.

Talking to other coeliacs (friends, family) I have discovered that the gluten and milk combo seems to be more commonplace than I expected. In fact I don't know any coeliacs who do not have a milk intolerance/allergy.

Is this commonplace?

I wrote to the Coeliac Society who were a bit dismissive (shocker) and also have challenged some suppliers - e.g. Genius who are producing a huge range of new products which are all gluten free but full of milk. They replied surprisingly that their products had to have milk in them (!!!!) as it was part of what made them special and there were no alternatives (uh huh!). You can guess my reply!

So, quick straw poll - how many of you do/don't have milk and gluten problems?

43 Replies

  • Hiya meanioni, I do not have problems with milk or milk products. I do have problems with eggs though,

    Also plasters, rubber gloves & disposable surgical type ones. I later found out that flour is used to dust the insides for easy removal etc... Darn stuff gets everywhere eh!

  • You have just answered something for me, i thought i was allergic to latex!!!!!!!!!!!!!!!!!!!!!

  • Hope you are talking about disposable gloves!... ; D carona

  • gloves too, lol

  • Had to hang up, my hold up's too : (

  • That's interesting. Latex condoms, hold ups & gloves etc all irritate me as well. Thankfully you can buy non-latex versions of these. I wonder if there's been any research on coeliac + latex problems?

  • Hi meanioni, this is a very relevant question because many coeliac are intolerant to lactose when they are first diagnosed. This is because lactate the enzyme which breaks down lactose is produced at the end of our villi so obviously if the villi has not recovered lactose intolerance or temporary lactose intolerance prevails. But it's not as simple as that and I laughed to myself when I read your question as I thought ''here we go again'' because cows milk molecules are 200 times bigger than human milk so it has to be broken down in the gut before it can be digested. Goats milk molecules on the other hand are the same size as human milk molecules and contain lactose and many people who have problems with cows milk can digest goats milk.

    Now back to your question I have issues with lactose in that I can tolerate milk in tea but if I have lashings of cream, that acts like a laxative for me. But I have the same problem with many fats and my body seems to prefer a low fat diet. I have real problems with palm oil as that acts like a very powerful laxative for me and is used in vegetarian pates and sweet mince meat. I was told that many coeliac have problems with fats and do not absorb fats well hence the laxative effect.

    And I drink lacto free milk but I also eat cheddar cheese sometimes and suprise suprise hard cheese like cheddar is low in lactose. I also drink low fat cows milk when away from home sometimes with no apparent ill effects.

    So I would say that I am lactose sensitive rather than totally intolerant to it, like I am with gluten.


  • cheese butter and milk all act as a laxative to me and make me really ill.

  • Stand by, i have just had livwell bread WITH BUTTER, I so couldn't resist it even though i know i'm going to be ILL. Get back to me at 5am!!!!!!!!!!!!!!!!!!!!!!!!!

  • Hi Meanioni,

    Yes, I became lactose intolerant about 2 years into being diagnosed and going gluten free.

    Glutafin and Livwell make a lot of g/f d/f breads and other products but you are right that most others have milk in them.

  • Oh OK

    I describe this as: "once you hit 35, bits start falling off!!!!"

  • oh to be 35 again lol

  • You start replacing the bits that have fallen off with plastic/metal ones.... e.g. teeth, hips, etc. In the 70s there was the "Bionic Man" funny to think that you're average 70 year old probably has more technology in them than Steve Austin... :-)

  • Hahahahaha so funny

  • I dread to think! the big 50 in March & the 'bugger' hit back with a chest infection/ asthma flare up that lasted 2 months! So to anyone that phoned me- No! I wasn't attempting to put on a husky voice. It was my vocal cords being battered by coughing!

  • I dread to think...hit the big 50 in March..

  • oh hell, not good !!!!!!!!!!!!!!!!!!!!!!

  • Yes, I'm lactose intolerant. I discovered the connection about 1 year after going gluten free. I'm still lactose intolerant 5 years later and don't imagine that will ever change, now. BTW...I'm over 60.... when you've had as much internal damage as I have from eating gluten your entire life, you're just happy to still be alive and enjoying your children and grandchildren.

  • Dont get me started on this.....fifteen years after being told i was a coeliac...last year i started having those lovely symptoms again........after doing a food was decided to take me in for biopsy's......the lower section of my bowel ulcerated and red was decided it was colitis......not conviced of this....and may i add still being very poorly i went to a 100 year old herbalist shop....the knowledge they came out with was far superior to my "private" consultant the best in our area hmmm....coeliacs should not take milk or soya and should eat meat sparingly as we find these things hard to after being very poorly for a whole year!!!.....i took out dairy and soya from my diet and hey presto im well again......right back where i was fifteen years ago now trying to replace my gluten food with dairy free and gluten and soya free ingrediants.....very tricky one may i add.....i have found the best products are actually in sainsbury's free from range....some of their breads are ok as well as the occasional treat (because coeliacs are also more prone to diabetes)......the answer is simple God Made food not man made food.....boring but essential to well being.....

  • Hiya Karen, that reminds me of something the dietician asked me at the Coeliac clinic. I was asked if I ate a lot of convenience foods as she thought that was thought to be a contributing factor to developing CD? Being raised by a Mum who was 9 when the 1939-1945 war started. Food rationing etc. All meant I had been taught to cook 'properly'. That & being a divorced Mum of 3 young children- it was much cheaper to buy & make from scratch food. Than 'ping' food...what I call microwave meals.

    Was also told there was a higher percentage of women in their 40's developing CD with diabetes- what's that about?

  • Hi Karen....I have just resigned myself to we know our bodies best...I think CD comes from being weaned to early personally and the fact they say it is genetic....all my children have been tested and they dont have it and no one else in my family has it....but i know people do have a higher chance of diabetes that have coeliacs....that has always been my biggest worry...hence i vary rarely have treats...just to air on ever this is the biggest laugh in fifteen years after never having a weight problem i have put on nine stone.....drives me mad....

  • h cheersi there just wondering why you think you put on weight? I am the same

  • Wow wee Karen it looks like your dietitian is living in the dark ages. Plenty of people gorge on convienance foods + never develop CD. As we all know CD is an auto-immune disease & there are both genetic & environmental triggers. Most recent research points to the intensive wheat farming & production of bread which has a far higher gluten content than ever before.

  • have drunk sweetened soya milk for years and love it now.

  • I find that if I eat small amounts of dairy I am fine, but often a latte with 200ml of milk in it will give me stomach cramps/wind. This seems to be getting better over time, but is still a problem a year on.

  • i soooo miss my latte's :)

  • I too have gained weight since going onto a GF diet. Had put this down to the severity of my asthma/oral steroid used to relieve symptoms. It was only after looking at the calorie content of the GF bread I have on prescription etc, I realised many of the GF produced foods have a double wammy! Not only are many of them tasteless...they are also much higher in calories! You'v only got to look at a slice of 'our' bread compared to 'normal' stuff see that size doesn't match calorie value! I'd been thinking/hoping the GF diet & careful avoidance of sweet stuff to delay the diabetes threat- diabetic nurse had told me, if you manage your diet as though you already have diabetes, you may delay the onset. As had also been told it wasn't a case may become, it was a case of you will become diabetic in later life!

    GP sends me off for annual blood tests to check my cholesterol level & the Impaired Glucose Fasting check-as had tested positive after my 1st one 6yrs ago. Put that down to pre CD diagnosis, working full time & being constantly tired .. I used to go for the quick fix sugar boosts, rather than the slow release healthy carbs. So it is even more frustrating that even tho I am so careful about what I eat, I have gained weight..... Someone, somewhere...must be having a laugh! & it's not me : (

  • I just thank god i have a pretty face....:)

  • LOL Karen - we must repeat your mantra too. How do jeans get so tight when there's so much we don't eat?

  • Well said Karen. Have you also asked your Dr to test you for Thyroid problems as well? That can often cause tiredness + weight gain + is associated with coeliac. FYI there are many other shop bought + own brand breads that contain far less fat and are also dairy free. We switched to them for the very reason you quote.

  • Hi all. I'm shaking my head at the 'diabetic nurse'. The link between coeliac disease and (and note) TYPE 1 diabetes is a genetic variant. They should know that.

  • I do not have a problem at all with dairy thank Goodness, but I do have a problem with soya in things.

  • I don`t think I have a problem with Milk and lactose now but I was lactose intolerant as a child but grew out of it! I think there is evidence that CD and lactose intolerance go hand in hand because I was diagnosed with CD 4 years ago and my brother has just been diagnosed with it after also being lactose intolerant as a young child!

    I also have diabetes and I wonder how much that is linked into CD and other auto immune diseases?? Anyone with any thoughts on that?

  • sorry I have just read through the comments before me and I can see now that diabetes and everything is all linked!

    Just a thought though.... I was advised to take 4 times the recommended daily amount of calcium because of my body not absorbing any vitimins and minerals but I was advised to do this my drinking more milk and eating more cheese??? Now this seems like madness!!

  • oh elspeth who on earth told you that & will you ever listen to them again ? I have been a vegan for 20 odd years & gf for over 11 & its not fact it is so not easy that i have reintroduced the occassional free range egg & the odd product with egg in i know i am not technically vegan but ther majority of the time i am....i am lactose intolerant too & was very ill as a baby because of it & worked it out for myself many years ago & have had it confirmed a few years ago @ an allergy clinic & get irritated by the amount of dairy you get in a lot of gf products especially as so many of us are so sensitive...i have had a range of responses from medical staff to my diet ranging from YOU HAVE TO EAT MEAT OR YOU WILL DIE which quite frankly is utterly ridiculous & incorrect to YOU HAVE DONE THE BEST THING FOR YOUR BODY GIVING UP MEAT & DAIRY.....the latter is proven by my own research & inner knowledge & listening to my fact i used to have a giggle @ the medical staff who would come & take turns to meet & look @ me in amazment when i was first adapting to gf as i do not think they had met a vegan before.!...i like to think i taught them something valuable that they can pass onto others... .i do now take lots of calcium supplements a day because i am fearful of my later years with this disease & thank goodness I have never really had a sweet tooth because i do not want to invite diabetes into my fact i refuse to allow it to darken my doorstep ! I have noted people making the obvious links between gluten & dairy but did you know that it would be in your best interests if you kept an eye on citris as it is up there with the others being the most troublesome three groups...

  • Oh tell me about the stress of getting milk-free products, milk is in every damn thing! I find it harder than getting gluten free food.

    What annoys me the most is the blindness of the "free from" product suppliers who make products full of milk.....

  • Very true Meanioni.

    In fact I've been trialing going dairy free for 2 mths now + have never felt better. I'll blog about it properly soon.

    Did you know that these are some of the most inflammatory foods to eat/drink?

    - caffeine

    - casein (in dairy)

    - sesame

    - alcohol

    So I'm gradually working up to giving up alcohol as well - maybe i the new year?! Giving up caffeine has also given me lots more energy & niggling psoriasis, rosecea, and endometriosis problems are also settling down. So it's definitely worth pursuing. I was amazed at how many times dairy crops up in things you don't expect - milk in crisps anyone?!

  • Ahh milk in crips! Yes lots of the flavourings use products like milk whey and barley-- safest crisps are walkers ready salted and prawn cocktail.

    I was diagnosed with a milk intolerance when I was really young. And after 4 years of barely any improvement, pain and a gazillion tests for other allergies; I finally paid privately for a proper coeliac test- sure enough- positive. I was refferred to a dietician after the result and told that lactate is a difficult enzyme to break down anyway, and my gut was so damaged that I couldn't break it at all. It's common for Coeliacs to be slightly intolerant simply due to damage. But, thanks to years of GP's putting off tests-- turns out my gut may never heal enough to eat milk again; even if I stuck to GF for the rest of my life. Milk, diary, wheat and gluten are all gone!

    It's not all sad though- organic meats, veg and potatoes are nutritious and substantial- it's a much healthier diet, so long as you're getting enough vitamins. Deffinately see a dietician guys- t'was an eye opener for me and get tested properly, because it's one they try to avoid diagnosing- blaming other things like IBS!

  • Walkers Barbecue Crisps are GF/Milk free too as are Co-op Bacon crispies (Frazzle style crisps) (Aldi also do a less tasty version).

    Another classic - soup! Found Heinz now do a GF/Milk free cup-a-soup (their squeeze and stir range - Mediterranean Veg)

    Milk in things drives me bonkers.... far, far worse to avoid than Gluten. I get a more violent reaction too - and its not just lactase its milk protein.

    And don't get me started on thick waiting staff who look surprised when told that veggies smeared in butter, just might contain milk!!!

    I've had stand-up arguments with restaurant staff over this - one who denied he had served veg with butter on (took it away and brought back a plain one, but denied the original had butter on it) and another where I discovered the salad had been sprinkled with Parmesan, and then the cheese taken off again after (but leaving small flakes behind). I only discovered this towards the end of the meal when I spotted some at the bottom of the salad. He had a real go at me because my plate was nearly empty - (not that it mattered) until I offered to "prove" my reaction by bringing a bag of you-know-what back to him the following day post becoming ill!!!

  • 4 gluten free in the family:

    1 - gluten intolerant, no other food problems

    2 - gluten and dairy intolerant

    3 - coeliac + anaphylactic nut allergy

    4 - coeliac + intolerant to dairy, rice, potato (& various other gf grains)

  • my word.....your family sounds like you will be well versed experts in the immune field if not will be able to bring much help to others i am sure....

  • hi there I too have lactose intolerance, so as you say they need to do something about the gf products. it gets harder and harder. cheers

  • I have problems with lactose and also a big problem with Soya along with the gluten, so yes other intolerances do tend to go hand in hand as far as I am concerned.

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