Hi all, it's my first questions on here so please be gentle.lol.
I have been totally GF for 4 months now and am also looking at dairy as I am still reacting to something. I am a autoimmune thyroid patient and am mainly managing my own health problems due to the lack of knowledge from GP's and consultants so any tips/help you guys can offer would be appreciated.
I am at the stage where I am running around in circles not knowing which food is causing which symptom so am looking to have a extensive food allergy testing done. I cook all my own food from scratch and don't go anywhere near the "free from" sections in the supermarkets, I have been a veggie for 25+ years (which is making it harder for me) and am into gut health/issues as I know that my autoimmune illness started in the gut.
Could anyone suggest a way forward for me and also where to go for allergy testing.
Thanks for reading.
Moggie x
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Moggie
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I am afraid I cannot help you with regards to finding somewhere to test you for food allergies etc. However I thought I would write to advise of my experience, I could be wrong but I don’t know whether you would be wasting your time and money if you intend to pay for any allergy tests, although I am sure that there are far more knowledgeable people on here than me all I can advise of is my own experience.
I got diagnosed with CD and DH after attending a NHS immunology clinic. The clinic tests every patient for CD . The reason I asked to be referred to the clinic was every year at this time I used to have breathing issues and a very blocked nose and used to have to take steroids, eventually I asked my GP if I could be tested to see why I was having the problem and was sent to the immunology dept at the local hospital.
I have just been discharged this year and despite them doing numerous tests ( they took loads of blood and I had a skin prick test for lots of different allergens), they have found nothing I am allergic to. Despite my thinking that I had a severe allergy (hay fever type ) they found nothing other than the CD.
One Dr informed me a test had come back as positive for plantain which he told me not to worry about as it was a banana type of food we didn't eat over here, in a later appointment I asked if this could be the weed plantain that was causing the allergy and he simply said yes that was it, as though he had never mentioned the plantain food allergy!
In yet another appointment when i asked about the plantain allergy again it was discovered that the test had been flawed and a further test called an ISAC test was done. I was informed that the ISAC test allergycliniclondon.co.uk/a... was a new one, very accurate and if they couldn’t find anything in this test then I would have a very rare allergy. I had this done on the NHS so it did cost me anything but again it came back negative.
Personally I think I have had CD and DH for almost 30 years and the allergies were a reaction to my body being on constant alert and fighting all of the time, I didn’t have the breathing difficulties last year and I have a touch or hayfever and asthma so far this year but nothing like before.
I have been GF since 2011 and haven’t been feeling very well since then; I do eat some processed GF food although I am strict and don’t eat codex or anything made in a factory etc. I decided to give up milk about 3 months ago and noticed a big difference in how I was feeling. I am still trying to work out why some foods make me feel unwell and I am struggling with giving up dairy as I love butter and cream.
After all of the testing I have had done none of the tests said I was allergic to dairy yet I am positive milk definitely affects me and cheese makes my DH much worse.
I think that the best way forward is pay attention to your body and keep a food diary, hope this is helpful
Thank you so much for your detailed answer - could you please tell me what DH is? (novice here.lol) and also what is codex, where it's found and why should you stay away from it? Sorry for all the questions but I am a huge fan of the "knowledge is power" approach.
I have just found out that a IGg food intolerance test will cost £250, so quite expensive, but like you I know there is something causing me exactly the same symptoms as you as I have headaches most days and suffer badly with sinus troubles. I am slowly weaning myself off of dairy, which is a real pain for me being a veggie, but have found a good lactose free cheese (again very expensive) and have switched to goats milk, which doesn't taste all that different from cows milk. I also buy my own lactose free thyroid medication as my GP would not entertain the cost of prescribing it for me.
I am wondering what type of testing the NHS do and how it may differ from the IGg testing - if at all - and, like you say, am I throwing my money down the drain but to keep going round in circles is driving me mad. Think I may have to do a bit of research to see exactly what type of allergy tests the NHS do.
I do keep a food diary but, as I have learnt from experience, a reaction can take a hour, a day or a week to show so most of the time I am still left frustrated, hence why I am now looking into testing. Like you I think dairy is a problem for me and it seems eggs and tomatoes may also be causing me problems. I also had an instant, very bad, reaction to brazil nuts - which can contain a lot of mould believe it or not - so I now know this is a problem for me and it showed in an instant major sinus flare up, so maybe you might want to keep that at the back of your mind for future reference.
Thank you again for your reply it was very helpful.
Sorry DH stands for Dermatitis Herpetiformis which is an itch skin rash some people who have CD get. What I meant by codex is there are some foods such as bread and flour available on prescription which are not wheat free ( they are gluten free though) they contain codex wheat starch, they are supposed to be safe for people with CD but some people do have a reaction to them.
My symptoms sound very similar to yours, I tend to have headaches and if I have something that has made me have a headache they last about 4 days, I get prescribed sumatriptan medication which alleviates the pain. I do have some stomach issues but these are minor.
I asked about my daughter having the IGG test when she was being tested for CD on the NHS and we were told that they didn’t do that test, we are in Yorkshire and as you probably know each region has their own budgets etc so not sure whether this is the same in the whole of the UK.
I know what you mean about cutting out dairy being difficult , I have done this completely this week and although the rash hasn't flared up as much, it’s still there slightly. It’s very difficult as butter, cheese and cream are really nice, I haven’t found a good substitute for cheese I am afraid.
I also get stomach ache when I eat nuts on an empty stomach, so am ok with a cake made from almonds but if I were to eat a bag for fruit and nuts it would hurt.
You mentioning mould made me remember that about 3 years ago my blocked nose and breathing flared up badly and at the same time we had a leak in the house which had caused some mould to grow in the bedroom,( it had been behind a wall), I was sure that this was the issue and the rang up the hospital and they agreed to do some tests fo allergies to mould for me, but again they were negative.
If you are a vegetarian are you having your vitamins and minerals checked to make sure you aren't deficient, many of us are and if you are cutting down on dairy and don’t eat meat you need to make sure that you are getting enough nutrients.
Thanks for the reply and also the explanation on the DH and the codex - you live and learn.
It has got to the stage with my meds and vitamins that the GP actually asks me now what I am taking as she trusts me to know what I need and when. I have been diagnosed with vitd deficiency (first test showed a result of 12.5) and now take 4,000iu daily, I also am supposed to have hypoferritinemia - which means low ferritin without anaemia but when I looked back on my iron studies both my iron and ferritin results where below range so I don't know where the gastro got that diagnoses from. I was on 400mgs ferrous sulphate daily but was taken off of these recently and started to go down hill so have put myself back on 200mg's daily. As you can tell I am up to date with my vitamins and also take fermented cod liver oil (absolutely disgusting taste) for vitE and vitK2 because I take vitd daily and I don't want to end up with kidney stones or worse.
Thanks for answering the NHS v private allergy testing - so the nhs don't do the IGg testing, which is way more accurate that whatever they seem to be doing so I may well invest some of my hard earned cash to see what it throws up. I'll end up eating thin air at this rate.lol.
I'll look at the name of my lactose free cheese tonight (I'm in work at the moment) and let you know what it's called as it tastes exactly like normal cheese (and take it from me I am a cheese addict). I do know it's got a cow on the packaging, which is pretty confusing, but it taste lovely.
I think eggs are going to be very difficult for me to give up, as they are part of my staple diet, but I'll do anything to get rid of my bad heads and blocked up nose. I make my own, very simple, version of GF bread which has eggs in it so I will be up the creek without a paddle if I cant bring that into work every day for my lunch. It's finding a totally different diet that suits you that is so difficult isn't it as I'm not just GF but seem to have multi food sensitivities - finding out what they are will be a big step forward for me. A friend has just pointed me in the direction of rice noodles, which she spices up herself, or a brown rice dish with veg and spices so a few new ideas there.
Do you use the genius GF pastry? I found it in the freezer dept of Asda and its great - taste nice and the texture, once baked, is good too. I make a lot of quiche's and that will be another thing I will have to give up if eggs are a problem.
Well best get back to work now or my boss will have something to say. Thanks again for all the wonderful info you have passed on to me and I'll definitely come back to you with the name of that cheese.
I also bake quiches to take away from home for something to eat, I find them far tastier than sandwiches, I bake several and then freeze them and take them out as needed. I have a pastry recipe which is really good and easy, in my opinion it makes better pastry than my “normal” pastry used to be, but then that wasn't the best. It has an egg in it though so might not be suitable, if you do need the recipe I will look it up.
What do you use as a replacement for milk for the quiches?, I found when I defrosted my last one it had lots of water seeping from it and I think it was because I hadn't used proper milk but a substitute one such as Koko which I tend to use in tea.
I also eat loads of eggs, as I find them so easy, and they are filling. I hope you find that you don’t have to stop eating them as it will be difficult being a veggie.
Although I feel better from giving up milk my rash is still there slightly but its not as itchy so I could also be reacting to something else as well. I really need to try to go on the simplest diet possible and then introduce things one at a time to see if I react, but I find it very hard going without nice things to eat.
If you could advise on your good cheese I would appreciate it, I have tried Tesco Soya which tastes awful and lactose free cheese which was like tasteless plastic.
Glad to hear that you have your vitamins and minerals in check, think it’s best to always ask for the results as you can be just at the bottom level but they will tell you your normal. I have just had a test on my vit D and Zinc and haven’t had the results to see what level they were on as I have been on supplements for these, I didn't know it was a good idea to take cod liver oil with them, so thanks for that.
I also take iron tablets, my iron was 25 (within range) but still low so I asked for the supplements.
Please don’t take it as gospel that the IGG test is not available on the NHS, this was at our gastro clinic which my daughter attended, it could be that they use it in the immunology clinic I don’t know, maybe you could ask your doctor to send you to your local immunology clinic or perhaps the doctor might know if the test is available on the NHS.
They mentioned different tests on the gluten free summit, there is a website page where someone has summed up the points raised on the summit, here is the page where they mention tests deglutenous.com/blog/wrap-u...
Thanks for all the information you are sharing and yes please I would love the pastry recipe (even if it has got an egg in it.lol.)
The lactose free cheese is by ARLA and, like I said, has a cow on the front so you wouldn't automatically associate it with being lactose free - hope it suits.
No its vitK2 that needs to be taken with vitd to stop an access calcium you could be making going to places that you really don't want them to, like your kidneys or your heart (sorry must have been the confusing way I wrote that bit), I have just bought the NOW brand (its American but veggie friendly), I think I got it from Amazon. VitE is to improve gut health, which I am desperately trying to do. I listened to a really good talk from Dr.Natasha Campbell McBride last week (its a long one) and she mentions CD quite a bit and is very interesting, if you want the link let me know. She talks about "sealing and healing" the gut and in doing so you can eliminate the food intolerances (obviously not gluten but the rest can be scales down) which gives me a bit of hope.
I have got a bulging folder full of blood results which I wave under my GP or consultants nose on a regular basis. I ALWAYS get copies (even from the hosp - which didn't go down to well.lol) for two reasons. The first being that I don't trust the doctors to tell you all you need to know and the second is for my own information and I cant tell you how many times that folder has gotten me out of trouble when I am sitting in front of a consultant. They tell you your blood results were fine so I pull out my copy and tell them it's not.lol. They must hate patients like me but it's the only way to keep a check on if the doctors and consultants are doing the right thing for you as thyroid illness is so badly managed by the NHS.
I have started using goats milk and find it doesn't taste any different to cows milk but have never put it in a quiche, maybe I will test it out with your pastry recipe and let you know - I did try goats cheese but didn't like that.
Think I will give my GP a try on the immunology clinic but I bet she doesn't agree to send me. When I first went to her she wouldn't test ANYTHING, it took me 2 years to get my vitd tested and when it came back at 12.5 she was a little shame faced. It was the same when I asked for my iron to be checked but she has now come to realise that I know enough about my illness for her to trust me so, fingers crossed, she may well agree to send me to the clinic - would be interesting. It was my endocrinologist and gastro that did the extensive testing which enabled me to get a full picture of my health.
Make sure you take your iron with a good vitc supplement or your body will be unable to absorb it, so it wont work, and with food or it can damage the lining of the gut (sorry you may know all that already but better safe than sorry). I use the Lamberts vitc powder - just ordered another one - which is expensive at £13 but lasts a hole year so worth it. I take a half a teaspoon with each tablet.
Thanks for the link - I am still listening to the gluten summit as my friend bought it and has allowed me to use her password - and have found it very informative so will definitely look at the link you have kindly given me.
I have enjoy our little chats and learnt a lot, so thanks again, and look forward to the pastry recipe coming my way.
Thank you for the recommendation for the cheese, I have tried one of their cheese and I found it very bland, but when I looked it up it, it comes in different flavours, the one I had was a bit like tasteless plastic not like cathedral city at all.
This cheese is lactose free not dairy free which is probably why it still has a pic of a cow on it. Lactose is the sugar in dairy products, so you are still getting the dairy but not the sugar, some people with CD cannot digest lactose until the villi in their intestines heal. I have gone dairy free to see if it makes any difference. Having said, that I haven’t tried goats milk, my daughter said it wasn't very nice so I didn't try it, can you recommend the best one please.
Thank you very much for the help with the vitamins etc. I didn't know about vitamin K and E. I have stopped taking the Adcal at the moment (my level was 42 when tested previously so nowhere near as low as yours) as I just got sick of taking the tablets. I have been trying to get a bit of sun when it comes out so I am hoping that will have taken my level up.
I was also prescribed zinc effervescent tablets as well the ferrous gluconate and the reason I got sick of taking them all was it was difficult to take them as you have to not eat certain foods like bananas, not take them together, the adcal and zinc say to take with food the iron says ideally on an empty stomach (I notice you say take yours with food just wondering whether yours are different. I will have a look for the vitamin C powder as my hair has been falling out for years and I think it’s because my iron is low.
Both the consultants I have spoken to (immunologist and my daughters gastro) said both our levels for B12 ( around 225 - 250) and iron ( 25 – 45) were perfectly adequate, they simply didn't listen, but our GP is giving my daughter Vitamin B12 injections monthly and myself them every three months, he also gave us the iron medication.
I don’t think the specialists even look very closely at the results of these tests, they didn't tell me I had low Vitamin D despite the test coming back low and my telling them I still felt ill, so I really think you do the right thing by getting your results.
I was worried about the calcium causing stones as well as we live in a hard water area and I drink lots of tea which again you aren’t supposed to drink at the same time as the medications. I am going to see what my blood results are and then start them again if they aren't very good.
The recipe for pastry is very simple, I make it in a food processor, it’s from a book by Michael McCamley who was a gluten free chef of the year called Gluten Free Baking, we got it from The Works book shop and its available online at their website .
8oz 225g of gf plain flour ( I use doves)
½ tsp xanthum gum
½ tsp salt
4 oz or 115g of butter
1 egg
4 tsp water
Place all dry ingredients in food processor, add butter and whizz till it looks like breadcrumbs, place in a large bowl, make a well in centre of flour and add beaten egg and a little water, you may not need all of the water. Form a ball with the dough and knead well, wrap in clingfilm and pop in fridge for half an hour. Use pastry for quiche etc and bake at 180c.
If you haven't got a processor then simply place all dry ingredients in a bowl and rub in butter. If you make double don’t double the water it really doesn't take that much.
Thanks for the recipe I will give it a go as the Genius stuff I am using is £2.50 a go - they certainly know how to sting someone with special dietary needs don't they.
Will have to have another look in the fridge tonight and get back to you on the goats milk - I drank a whole glass full and for the life of me couldn't tell the difference. Had it in my tea this morning as well and to me, who loves her tea, still didn't notice a difference so will get you the make and post tomorrow.
Your ferritin levels (which is the important one - not iron levels) needs to be above 80 to stop hair loss so see what your ferritin levels are reading. My hair has finally stopped falling out after years of shedding.
Doesn't it make you mad when these so called professional's don't listen to what the patient is telling them - its a good thing that you have such an understanding GP or your health would be a lot worse. I had to try 5 different GP's at my surgery until I found one that would listen and even then it has taken me a couple of years for her to start treating my symptoms and not just my blood results.
Make sure you get the vit K2 (the two is very important) and not just vit K as there is a difference and they work differently.
I have found that my local hosp do an immunology clinic once a month and they also do the IGg testing so will be asking my GP to refer me before I fork out £250, if she says no I will not be pleased and will let her know.
I know what you mean about being sick of taking tablets as I have to take my probiotics in the morning with food (I hate eating in the mornings), then at lunchtime its the iron tablet with vitamin C and then tea time its the vitK2 and all the above have to be kept, at least, four hours away from my thyroid meds or they stop the absorption of them. I fit the other things like vitB6 in between and it feels like I am forever taking one thing or another.
Thanks again for the pastry recipe, I will give it a go but I am not sure I am good with the gum stuff.
Will have a look at the goats milk and get back to you.
Using gums (xanthan or guar) in baking seems to be a problem for many people, they act as a laxative for me. I bake without any gum, and use a mix of gf flours, like chick pea and buckwheat, it can be a bit crumbly!
There are several good sites on baking. Have a look at Gluten Free Goddess.
Thank you for your reply and the site recommendation, will definitely be having a look - so it's not just me with the gum then, that's a relief to know.
Hi tmoxon, as you like quiches, I saw on come dine with me a lady make individual quiches in ramekin dishes and instead of using a pastry base she just fried some diced potato and added that to the quiche mix and baked. And I thought what a good idea for coeliac!
I also make a large quiche and instead of using pastry I cook and mash 3 or 4 large potatoes line a deep casserole dish with the mash and bake for about 15 mins then add the quiche mix and bake until cooked. This is really nice and is ever so easy to make. It also slices well and the next day when it is cold it slices really well and is great for eating when out and about.
This recipe is from Bette Hagman the gluten free gourmet.
Thank you very much for those two tips - seems like I have found the right place for improving my drastically diminishing menu. Will give both of those a go, as I know you posted them for tmoxon but I'm sure wont mind me having a go as well.
Thank you for your recommendation. This idea for those who want to give up on grains or at least cut back.
Could you please advise if you put butter/margarine in the mash before baking it, just wondering whether it would make any difference to slicing it up and setting it better if you know what i mean
Hi tmoxon and Moggie here's the recipes and there's 2 pictures of the large quiche. I spread the potato into the dish and put butter in the mash and put small pieces of butter on the mash before blind baking it, (you can use pure spread if you want to make a lactose free one) this makes the potato base crispier.
It took me six months after going gluten-free to figure out that I had a dairy intolerance.
The lactose free cheeses don't work for me - I still get stomach ache. I now use a substitute Vegan 'cheese' called Violife, or sometimes I will have Soya-free Cheezly instead. Both are somewhat of an acquired taste but much better than having a dodgy tum.
For me giving up dairy was much worse than giving up the gluten. I love butter and cheese! So I was getting all sorts awful physical and emotional cravings for dairy in the beginning.
It took willpower to stay out the cheese isle, I can tell you!
I've tried putting dairy back into my diet several times since, but I'm now resigned to the fact that I feel much healthier without it (because I don't go dizzy any more either).
So now when people ask me about my diet, I tell them that I'm a Dairy and Soya intolerant Vegetarian Coeliac. That tends to raise some eyebrows...!
Thank you for your reply and the info. It still amazes me how certain foods can have such an impact on your general health - I would never have connected dizziness with dairy but now you have said it my dizziness has calmed down loads since stopping most dairy.
God you sound so much like me - no gluten, no dairy, definitely no soya as it is one of the worst things a thyroid patient can eat, and meat has been off the menu for 25+ years. Makes me wonder what exactly you are eating??? I seem to have got stuck on a few meals with no variety so any ideas would be appreciated (I don't mean recipes as I read that the site doesn't like you posting recipes but any meal ideas would be great). I found rice noodles last night and cooked them with a big bag of veg, chucked in some chilli's and it was lovely.
My daughters raise there eyebrows like that as, although I have been diagnosed with thyroid and vitamin issues my CD test came back negative so they think it's all in my head!!!!
I'm a veggie of 30 years standing - so like you, meat (and fish) is staying firmly off the menu.
Heinz beans can be useful - great on a jacket potato.
I eat more quinoa now than I used to.
I like rice and GF pasta. Some of the GF pasta sauces are okay. Stirfries are easy and like you, I have discovered Eskal rice noodles.
I do enjoy the occasional home cooked curry and I have a great recipe for beef less bouguignon which is made with kidney beans instead of beef.
Alpro's almond and hazelnut are my first choice when I want milk, although occasionally I will also have koko coconut milk instead.
I find most GF crackers are pretty good and will have eat them with a vege yeast pâté (GranoVita I think - I use the one in a small tin). The co-op and do a fantastic chickpea (and possibly sweet potato?) chilli dip in the chiller isle.
Pumpkin 9bars! They are so useful as a snack food but I will also munch on nuts for a change. Usually there is a stock of these 2 foods in my handbag and/or my car.
And obviously I eat a wide range of fruit and veg. Sweet potatoes make a nice change from jacket potato.
Amy's canned Spanish, French, and Italian soups are quite useful on lazy days, if you don't mind the cost (£1.80 a tin when not on special offer). Look for them in Tesco's and Asda.
I have found that omelettes are great breakfast food - quick and filling.
I also have glutafin long life white bread rolls on prescription - when toasted they remind me a little of English muffins. I never eat any commercial GF bread untoasted - it's too dry! Some of the Udis products are ok as well. I've tried their bagels and GF pop tarts and liked the taste of both.
Thanks for that - I have already found the Amy's soups and love the Italian one but I'm with you on the cost. The tomatoes one is very nice but since I have given up sugar - yes something else I now avoid - I find it a bit to sweet.
Will take on board your ideas and work through them to see what I can used. I am not good with legumes and these can cause a sever reaction within a hour of eating so at least I know these are definitely off the list which means beans and lentils are a no go for me. I used to do a great red lentil, sweet potato and broccoli curry but its yet another meal I have had to stop, if you want the link I can send it.
I must admit I do eat the GF pasta, as I seem to be o.k. with corn flour, and have found a great sauce in Morrisons that is gluten, dairy and most other things free but again can be expensive.
Have just found out that there is an immunology clinic at my local hosp once a month and they do the IGg testing so a trip to my GP's is in order I think - lets hope she plays ball.
Thanks again for your tips and ideas and I am looking forward to a more varied diet from now on.
I'm with you on dairy been more difficult to give up than gluten. I tried just avoiding lactose but unfortunately it didn't work for me. My immunology clinic does do the IGg test and I am waiting results. Your GP should be able to refer you to a specialist clinic though you may have to travel as not all hospitals have them. Good luck
Your story sounds very similar to mine. I was diagnosed 2 years with CD and since then have dropped one thing after another from my diet. First I would check gluten free wheat and anything that may have been wheat in a former life, eg glucose, fructose and the like. Then maybe look at soya. Also look at your vitamins. I have been prescribed two different types of vit D, one contained soya and the other contained sucrose, both of which I react to. Finally, some advice which you may need in the future. I was vegetarian for 29 years and last month I have decided to eat chicken and salmon. I had been feeling so incredibly tired which I think was due to not getting enough protein. I have had so much more energy this month and ( I hate it say it) I am almost craving the meat now. It was a very difficult decision for me to make, but it turns out it was the right one for me. I just thought I would share that with you just in case you need it later.
That must have been extremely difficult for you as I have toyed with the idea but rejected it immediately as the thought of putting meat in my mouth turns my stomach - I really do hope I don't get that bad that I have to do that but I understand why you have and applaud you for it. I do eat fish but the only two types of fish I manage to eat (tuna and swordfish) both contain high mercury levels so can only eat a limited amount of these as the body cannot get rid of access mercury.
Will check my vitd drops as I never thought of doing that - thanks for the tip.
You have to practically be a chemist to read the labels on food and work out what the true ingredients are don't you and will look out for the two you mentioned - I'll tag them on to the very long list I already avoid.lol.
Thanks very much for sharing your knowledge and if you have any favourite meal tips for me I would love to hear them as the more I cross of my "can eat" list the more I am struggling to think of meals to cook.
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