Have been told to go Dairy Free as well now! plus DH advice please

Hi All, I went to see my dietician today, she has asked me to go Dairy Free for 2 months and then go back and see her, my asthma and hayfever have been really bad since upping my calcium after going GF. so she wants to see if this makes a difference, can anyone give me any advice, info or tips that they feel will be helpful, I have to say i feel a little bit sorry for myself lol, there doesnt seem to be much enjoyment in food for me anymore!

Also, I recently put on here about the intense itching and scabs that turn into briuses on here, I showed her and she thinks that its is Dermatitis Herpetiformis, which some of you had already pointed out to me that you thought it sounded like that, she said if the itching doesnt ease then i can have some medication to ease it she also said that if i was to have it confirmad that i have it i would then definately be classed as coeliac "offically" and could get my food on prescription?? any advice on this also would be wonderful.

Thanks everybody

Paula x

26 Replies

oldestnewest
  • Try Kara dairy free milk (coconut milk), or there are many nut, rice and even quinoa milks available.

    You can make sour cream and cream alternatives very easily with cashews and other nuts for use in cooking. the internet has loads of resources for this and all you really need is a blender and 10 minutes.

    Coconut or soy yoghurts are available in supermarkets - just watch out for the sugar content.

    Use olive oil, avocado or hummus (for spreading) or coconut oil in place of butter.

    Nuts can be used again to make ricotta and soft cheese substitutes, but there's not good hard cheese substitute that I know of really. However, if dairy is really a problem for you, perhaps it's worth this little sacrifice to improve your breathing and asthma.

    You'll need to read labels carefully and avoid things including lactose, whey, casein and other dairy derivatives. These are found in things like crisps, salami, sausages etc.

    GF and DF chocolate is available in most of the 'free from' sections of supermarkets I think.

    In order to really understand if you have a problem, it's important to be 100% compliant for the 2 months and not be tempted by 'just a little bit' of anything.

    What foods would you like more help with suggestions for? I'm sure lots of people on here have been through this.

    Has anyone done a skin biopsy to confirm DH btw?

  • Hi InVivo, I did two ski biopsies to confirm DH. Although the results were not a 100% there was apparently enough there, combined with my visible skin issues and my history etc etc for the consultant (who already fully suspected DH) to diagnose me as DH. However I've never had any referral to a dietician or any talk of 'follow up clinics' which I've seen mentioned on other threads (esp the one about "To diagnose or not to diagnose") so being medically confirmed as DH has made no 'official/medical' difference to my life. I am gluten-free by personal choice (because as soon as I ingest any gluten the itching, blisters, and all the other problems -both physical and psychological/emotional- start again), and have been since last December. I have never been offered any kind of free prescriptions. I even had to fight to get blood tests while I was on Dapsone (I only lasted 2 months cause it started to cause problems for me).

    I don't know if this was the answer you were looking for, but I hope it helps!

  • Hi Mummyof3

    I have been diagnosed as having CD and DH, the CD diagnosis came first and when I mentioned the rash I have had for many years they suspected I had DH. I had the skin biopsy earlier this year after a year of going GF. It didnt hurt was taken on my back and it healed well.

    I did wonder whether it was a waste of time to have the definate DH diagnosis or whether the fact I had been GF for over a year would give a negative result, but now I am glad I had the test as to be honest I would be wondering whether the rash was something else as I still get it despite being strictly GF ( no codex ws or may contain food, barley malt extract etc). When it gets really irritating I take a 50mg of dapsone tablet and that is enough to supress the spots.

    I would ask to be refered to a dermatologist as my GP is very good but knew little about DH.

    I found this website today which has an article on DH which you might find interesting delightglutenfree.com/the-a...

    I also have hayfever and asthma and eat and drink a fair amount of dairy, I would be interested to find out whether you see any improvement, however if your symptoms are like mine they are worse at different times of the year so I would find it difficult to say whether it was the diet that had made me better or that the season was changing and therefore I would have improved anyway.

    Good luck with it, please let us know how you get on

  • Hi, I was diagnosed with CD and for many years it was suspected that I also had DH..which has since been confirmed by my gastro doc when he saw it....I'm too sensitive for whiskey! Anyway I don't suffer as long as my diet is absolutely GF but when I do then it does last for a few weeks. Getting gluttened affects my guts for far less time. They do prescribe Dapsome but it does have quite a few side effects so I decided not to go down that line and on the odd occasion that I get caught out I now use a steroid cream that calms it a little. Fortunately I'm very good with my diet and don't get caught out often.

    I also have hayfever, asthma, eczema, psoriasis and numerous other allergies.

  • Thank you everyone for your replies, im going to try and give this Dairy free thing a go, but i feel like i did when told to go GF , what can i have , what cant i have you know that feeling!! I feel like i was just getting somewhere, Im sorry if this is a really stupid question but whats the difference between milk and dairy? because in the supermarket some things say dairy free and some say milk free, is this the same thing? My dietician said go for dairy free she didnt mention milk free or lactose free? im slightly confused. I have had a couple of cups of tea with the soya, its ......different ! but i think i can get used to it.

    Thank you for the link i will have a look.

    Thanks again for your replies i really appreciate it

    Paula x

  • Hi Mummyof3,

    Difference between milk and dairy: there isn't any. Anything made from milk is dairy; yoghurts, cheese, cream, butter; but all have different levels of lactose.

    You will find some of us have a Lactose intolerance, linked to a lack of enzyme (which means we can have Lactofree products) and some have a dairy allergy, often linked with eczema.

    Alpro soya products are dairy free and available in most bigger supermarkets (maybe not Morrisons). They do a soya cream, usually in the FreeFrom section, and yoghurts and milk in the chilled section. I drink Alpro Hazelnut or Almond milk which is in the longlife milk aisle. I cook sweet foods using this but it does taste strange in mash!

    Tesco have got some cream cheeses. I tried the herb one and had to chuck it away, yuk! You can also get a soya cheese substitute in some Tesco, and in Holland and Barrett. I tend not to eat this because I am only Lactose Intolerant and can therefore have the odd bit of cheese.

    Sainsbury do a Kinnerton chocolate that is free from gluten, wheat and dairy.

    Pure margarine is made from soya or there is another Pure - I can't remember what that is made from, something GF DF! If there is anything you are missing specifically just ask, I'm sure I will have found an alternative!

    Look out for dairy turning up in crisps, ready meals, ready-sauces, etc. Unfortunately there's no label like there is for some GF products!

    Sarah

  • Thank you!, yes i noticed that the label system are not as good! im sorry if that was a stupid question but i was completely baffled lol. So i bought some lactofree cheddar cheese, is this dairy free and ok for me to eat?

    I need to just start to get my head round it all i think.

    thanks again

    Paula x

  • No, Lactofree cheese is not dairy free :( for you.

    It's not a stupid question - it's a whole new world most people never encounter!!!

    Lactose is the protein in milk (dairy products). In order to tolerate and digest it your body needs to have the lactase enzyme, which is produced at the end of the villi. With coeliac damage to the villi, many coeliacs become lactose intolerant. Their small bowel can't digest lactose, so the protein moves on to the large bowel, home to the many gut bacteria. These bacteria have a feast and produce methane as their digestive byproduct. So us Lactose intolerant coeliacs bloat and have bad wind if we eat too much dairy/ lactose products. In a true form of intolerance there would be no eczema/ asthma symptoms.

    Completely aside from that many Eczema sufferers do much better on a completely dairy free diet. This time it's not the protein but dairy is a well known trigger of eczema/ asthma. These people need to avoid dairy completely, lactose free or not. This is an allergy, not an intolerance.

    I guess your dietician is looking to see whether the skin irritation you have is caused by gluten in your diet or dairy. If you are dairy free for the 2 months and see no improvement then it probably is the DH/ coeliac causing the irritation.

  • Ok thank you so much, i think im getting it now!

    Thanks again

    Paula x

  • Actually, lactose is a sugar not a protein. Anything ending in -ose eg glucose, fructose, maltose etc is a sugar. So lactose is a sugar found in dairy products, and dairy usually means anything coming from a cow. However, for the two months that should include any animal milk products. Goats, sheep, buffalo etc. as they all contain the proteins, albeit in different ratios.

    If you are having a respiratory tract problem related to dairy, it's because your immune system is reacting to the proteins in dairy (casein, whey and butyrophillins) and creating an inflammatory reaction leading to your symptoms.

    50% of people with gluten issues also have problems with dairy proteins because they have a very similar structure. They look almost the same to the immune system and so cause problems. It's not either or, it will be gluten AND dairy in that case.

    And lactose intolerance is different. That's a digestive system issue, not an immune system one.

    I would be careful to limit the soy products if I was you, it's another highly allergenic protein and if you start introducing it several times per day, ie two cups of tea with soy milk, plus soy yoghurt, plus soy spread plus soy cheese, you run a very high chance of then developing a problem with soy too.

    Also, unless it's fermented, as in yoghurt or tempeh, there's research that says soy can be problematic to hormones. A little is ok, but don't over do it.

    For what you can eat meal ideas, try the blogs of The Gluten Free Goddess, Adventures of a Gluten Free Mom and Healthful Pursuit.

    All of them are gluten and dairy free. Breakfasts, snacks, lunches etc. you'll be overwhelmed with choice, instead of just overwhelmed.

    Also try Marks Daily Apple.

  • Thank you so much for all of this information. i will check those blogs out for sure. As far as the soya products go, its only really in my tea (so far) but its very early days so far, i have picked up some yogurts today too bu have yet to try them. i dont mind the alpro light in my tea but the tesco own one was disgusting lol, its all about trial and error again i suppose.

    two cups of tea a day , is that the recommended lol, i think i probably have about 8! whoops.

    Thanks again i really appreciate it.

    Paula x

  • Hello Mummyof3 Sorry to hear you are still itching. Its not pleasant and as you know I got the DH too! I am not allowed oats or soya milk. I use Provamel rice milk for my cereal. Look at the Doves Flakes for your cereal I use them everyday. I don't have milk in tea or coffee. If you get officially diagnosed, you will get up to 14 units per month of prescription. My DH is slowing down the longer I am GF but am still getting occasional blisters. I am now neurotic about being anywhere near anything that has gluten in it. And I carry wet wipes and antiseptic wipes all the time! Its a huge learning curve or a horizontal line more like! x

  • Im not really much of a breakfast girl, im more of a cup of tea and grab a banana kind of girl but thank you i will keep that in mind.

    Im glad your blisters are slowing down now, hopefully it will stop altogether for you soon :) As far as getting neurotic i completely understand i think probably most people on this site do. I dont really trust when people say its GF , i then interrogate them as to what is actually in it, how it was cooked/prepared etc.!

    Paula x

  • Hi Paula,

    Hopefully you are beginning to feel better.

    My experience since being diagnosed as being both celiac and gluten intolerant (carry 2 genes) 4 years ago was that I became very ill after going gluten-free. Additional testing showed severe allergy to dairy (casein) as well as allergy to soy and eggs. Diet is simple, I eat almost fully 'paleo' ... meat, fish, fruit and veg.

    I was doing fine with this and then this summer I developed respiratory problems, itching, etc. so visited the Allergy Specialist who did the skin scratch testing which showed a severe allergy to trees (pollen) which was causing an asthmatic reaction. Now that summer is on it's way out, I had to return yet again for more testing due to more issues and more of the arm scratch testing showed allergy to ragweed/hay fever.

    I tell you this as you did not mention whether you had undergone any additional allergy testing and there could very well be something more at play.

    It's just a thought based on my own experience.

    Take good care and I wish you well.

    Carol

  • Thanks Carol, its always good to hear other peoples experiences, i havent had any testing for allergies, i went to the dietician yesterday she wants me to try ot for 2 months just to see if it makes a difference, so will we see!!

    Thank you all for the replies and well wishes.

    Paula xx

  • So many people, myself included, find a lot of relief from their multiple immune related symptoms with Paleo diet.

    Do try Kara dairy free milk. It is definitely my favourite of all the alternative milks.

    8 cups of tea is a lot of caffeine, that's very inflammatory to an already inflamed system...

    Probably best not to worry about it now though :) gotta have some comfort in life.

  • Tea is my only surviving vice at the moment lol , i will try Kara DF milk thank you.

    Paula

  • I hear that! lol

  • Just skimmed through these posts....a friend of mine is vegan and we get a really nice icecream for her from Sainsburys that's also GF. I'm afraid I can't remember the name but they do sell it in all stores I've visited....something nice to cheer you. She also likes rice milk

  • Thank you , that has cheered me up because i love icecream.

    Thanks again

    Paula x

  • Swedish Glace - also in Waitrose.

  • brilliant thank you x

  • InVivo, you're totally right; lactose is the sugar and casein is the protein. I knew that, just not at the right time when I was writing it!

  • Although I'm strictly GF I still have DH in places. Apparently it never completely leaves your system, so in a stressful period (lack of sleep etc) it seems worse. For me it is exacerbated by eating too much fish or iodine rich foods (and other halides). I use a prescription steroid if it is intolerable. The last time it was truly unbearable was when I underwent a gluten challenge. If I hadn't developed DH I don't think anyone would have thought to blood test me to finally be diagnosed with CD (and make sense of feeling ill for decades).

    Have you had a coeliac test? Do you see a specialist as well as a dietitian? I'm not sure why a dietitian is your sole healthcare professional.

  • Hi Jacks, yes i have had all the tests, im not coeliac i am Gluten Sensitive, i see my dietician regulary and i see my own doctor too for regular blood tests etc as i also have arthtitis, overactive thyroid, Low B12 (pernicious Aneamia), low iron, low folate & ferritin levels too! i also have asthma which is playing up a bit at the moment too.

    x

  • I'm a Retired RN. Always be on outlook, for recent medical articles released on Dapsone, and latest on DH. One study I just read , said the IgA level in the skin, at the cellular point, ( say at the elbows), takes yrs for that to decrease. I thought I would give us a reason why the itching is so intense. Even though gluten is halted, on a cellular level, not so much. The factor is still present.

    From what I understand, that's why we have to take it awhile, or all those. " hidden sources we miss?". I've been on Dapsone a very long time, looking forward when I no longer need to.

You may also like...