Could milk be the problem?

Recently diagnosed coeliac

Last week on holiday I managed it well and felt so good

Now I'm back home ate Some gluten by mistake and felt rough for a few days stomach pains and constipation the norm

For the last 5 days I've been very careful eating gf but continue with stomach pains and constipation

The only thing I can put it down to is milk ! Is this normal for coeliacs ? I also get mouth blisters when I eat certain foods like red grapes and toms

What's this?

I thought my pain and constipation would stop now I'd been diagnosed

Fed up

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10 Replies

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  • Hi Saabx30

    I'm happy to hear that you have now got your diagnosis sorted out. Sorry to hear that you're fed up at the moment though.

    Well done for starting on your gluten-free diet; just remember to keep checking carefully for hidden sources of gluten because the stupidest things can (and often do...) trip you up.

    In answer to the milk question - Yes! It's very possible/likely. I for one, cannot tolerate any milk products any more because they just make me feel too unwell (although not being able to have cheese any more was worse than giving up gluten IMO!).

    Some coeliac's only have to take milk out of their diet for a couple of months due to lactose intolerance but some people have a permanent intolerance to casein (The immune system sometimes confuses the milk protein casein for a gluten protein - this is called cross reactivity and causes similar symptoms).

    Your guts are probably rather messed up right now and are going to need some time to gently heal. I would suggest giving all foods that you think you are intolerant to a miss for a little while and trying them again in a couple of months. I would also monitor how you feel when eating foods containing Soya because this is another common thing people can be intolerant to.

    I heard in the gluten summit recently that some people find pure Slippery Elm quite soothing for the guts (look for gluten free version!). I also heard one contributor say that L-glutamine may help with the healing process. Please do your own research on these though as I have not tried either one.

    Btw, don't let your doctors forget to organise you a DEXA scan to check your bone density. Going on my own experience, I would also get them to check for B12, Iron, calcium and vitamin D deficiencies asap. Unfortunately you may have to be persistent at first and remind them that you cannot absorb the nutrients properly, so you need these blood checks done.

    Ps. Has anyone told you you may need to buy a new toaster?!

  • Be careful of the "Gluten Free " label, it means that it may contain up to 20 ppm of gluten per kilo, There are Coeliac's who cannot tolerate this level of gluten so need to exclude even the legally permitted derivatives. We are not all the same and it is not a textbook condition. It is however common that when first diagnosed you are lactose intolerant. You can be a Coeliac even with a perfect gut, There are several areas in the duodenum that are indicators of the condition that are found during your endoscopy & biopsies. You will need to find your own level of tolerance by simple elimination, good luck. (Been Coeliac twice with a top confirmation, so cannot be disputed.)

  • Hi Saabx30

    Milk could easily be a problem. Many Coeliacs seem to have other problems in addition to CD, it just goes with the territory.

    I was diagnosed in June 2012, and generally coped well for about a year, with only the occasional accidental 'glutening'. However, I tried whole milk about 3 months ago, having read it makes you feel more full and therefore snack less. About a month later I started feeling as if I had been 'glutened' all the time. Not linking it with the milk because of the delay in symptoms, I had some blood tests and found out I had high lipids (fat). Changing back to skimmed milk reduced the symptoms very quickly, but it seems I now have laryngopharyngeal reflux (LPR), which I suspect has been caused by my 3 months on whole milk (can't prove it of course). Consequently I am living with the symptoms of LPR now, and hoping they will subside over time.

    From my reading, LPR can have few symptoms, feeling of lump in the throat, dryness, occasionally heartburn, but not always, (plus others) and can be triggered by milk, cheese, tomatoes, chocolate, citrus, fried food and others. Your mention of tomatoes struck a chord with me.

    I have been keeping a food diary over recent weeks, trying to isolate the things that aggravate the LPR. I would recommend it, can be useful in identifying and eliminating problem foods, and when explaining to a doctor what may be triggering symptoms.

    I am convinced that every Coeliac is slightly different, it is a bit of a learning curve, I am now coming to the conclusion that while it is good to explore new things that can be incorporated in your diet, making such a major change as I did is probably not a good idea. There can be very unpleasant consequences.

    Hope this has helped in some way, good luck in identifying your problem and overcoming it.

  • I have certainly cut right back on dairy intake. Seldom eat cheese but not affected if I do. Milk I have dropped from cereals using almond milk instead. However I use milk in tea and coffee. As other folk have said it is very much an individual dietary experience.

    As to milk helping suppress hunger well I eat almonds which does a fine job!

  • Coeliacs can be allergic to milk as well but it is only temporary. Keep off all milk products for 3 months and then introduce gradually. You should find it has settled down then.

    Regarding the fruit - did you wash it before eating it. Try steeping fruit in a tablespoonful of vinegar and a pint of cold water. Apart from washing all sprays off the fruit it helps preserve it.

  • Re the mouth blisters it's definitely worth mentioning these to your GP, one of the things it could be is oral allergy syndrome.

  • Yes milk could be the issue but so could any one of more natural chemicals in other foods.

    You might find the information on this site useful:

    sswahs.nsw.gov.au/rpa/aller...

    I'm just about to embark on the strict elimination diet to find out which chemicals I'm intolerant too

  • Grapes can be a problem due to moulds - and tomatoes being part of the Nightshade family can also be a problem... the wild plant being Deadly Nightshade ! I have just given up all the Nightshades to help the aches and pains....it has been rewarding. Totally agree with Regalbirdy about the additional testing that is required. I have Crohns Disease and have found huge doses of D3 very beneficial - it is anti-inflammatory. It is more than a vitamin - it is a steroidal pre-hormone. Also the results of the aforementioned need to be HIGH in their ranges. Docs are often happy when they are in range and that could well be too low !

    vitamindcouncil.com

    Lots of interesting articles. Good Iron levels needed for healthy guts too ! b12d.org is another good source of information. As Philip Day once said - milk is for baby calves !

  • Thankyou so much for all your replies.......all helpful and interesting.

    I've actually felt dare I say it a little better today.....no pain !!

    I'm seeing a dietician on the 5 th of December have you any advise for that and do I need to ask my Gp for the further tests that have been suggested........I'd no idea I'd need this follow up no ones told me !!

    Thankyou again guys X

  • As you are going back to the hospital ask to be booked for a hydrogen breath test. It is very simple, non-intrusive and will tell you instantly whether lactose is a problem for you. Either way, it will take a lot of guessing out of future gut pain.

    Re tomatoes, grapes etc. In the UK many things are more acidic than in a warmer climate (they never ripen properly), so you might have found them more tolerable on holiday.

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