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Already coeliac - now new potential big allergies - advice please

(6 Posts)
ErnesttheBavarian Sat 04-Jul-15 07:33:29

I found out 2 years ago I have got coeliac disease and thyroid (hashimotos) disease. Same time had some allergy tests done, came back positive for nuts (tree and ground) and carrots as well as pollens, dust etc.

I have noticed i get unpleasant mouth tingling with many fruits and am constantly nose blocked snuffly, and have bad skin (weirdly only on my thighs and a bit on buttocks but nowhere else)

Anyway in UK (I don't live there) I sent off a blood sample to a lab which did a big food and drink intolerance (IeG) test and it's come back positive (strong reaction) against yeast, cows milk, duck chicken and a couple of other things.

I have made appointment with an allergist here but while i wait - I have some questions.

Does this mean I am allergic to cows milk rather than lactose intolerant? Do I need to avoid all milk cheese, yoghurt etc? (onto of the limitations of coeliac it seems pretty life-changing)

And yeast (as far as I can tell, is in many things so it would mean avoiding vinegars etc)

Final question -I read that you should still avoid things when mildly allergic because A. repeated exposure can make the allergy worse, B. you can have an unexpected big reaction, C. the constant battling against allergies is a big strain on the immune system. Is this right?

If anyone can suggest ways on coping with such a limited diet with no gluten, no dairy and no yeast (or chicken), it feels overwhelming! Thanks.

Superworm Mon 06-Jul-15 09:35:58

Sound like you could have oral allergy syndrome which I have too. I'm also a coeliac - not sure if they are related. Does it sound familiar?

ErnesttheBavarian Mon 06-Jul-15 11:54:55

Thanks. Yes, sounds familiar with increasingly many fruits and vegetables. Do you avoid them?

But oral allergy wouldn't affect IeG levels would it? Or would it?

I get a reaction from wine (even just a small amount cooked in a sauce ) which leaves me with agonising stomach cramps all night. No idea what affects me. Clearly not alcohol as that is burned off in cooking.

tinkerbellvspredator Mon 06-Jul-15 22:40:59

Not all alcohol will be cooked off. If cooked for a long time (hours) then yes a lot of it evaporates but no where near all. A common culprit from wine though is the added sulphates.

TheOracleofSelphie Mon 20-Jul-15 16:08:09

The wine reaction could be sulphites. It is used as a preservative in most wines and it is known to cause a lot of allergies.

For the other things, I've been through soemthing very similar, and it's been a long road, but hopefully some of the things I have learned/encountered along the way can help.

The milk allergy could be a casein (milk protein) allergy- I had this, and the symptoms are blocked sinuses, stuffiness, puffy face, and also skin problems acne (face, arms , back). There is a lot of evidence emerging that coeliacs are much more likely to have a casein reaction than the rest of the population- casein and gluten are similarly shaped proteins. This can also means that the proteins in other grains (e.g. avein in oats, zein in corn) can cause the same problems as gluten in some celiacs. I find I'm only ok with white rice (preferaby jasmine rice) and quinoa.

Yes, it is a good idea to avoid things that you are mildly allergic to, for all the reasons A, B and C that you mention. Also it helped me to understand that underlying systemic inflammation in the body is what you really have to tackle. All the little and big allergic reactions contribute to this, and increase it, and so make it more likely you will have more reactions. It's a negative spiral but it is one you can reverse.

Chicken and duck are quite high in omega 6s, as are many vegetable oils. The wrong omega 3 to 6 balance can cause a lot of inflammation in the body, so restoring that balance can help a lot. That means a lot of fresh fish/seafood and maybe a supplement, plus reducing sources of omega 6 (so corn oil, rapeseed oil, vegetable oil) and switching to grass fed meat rather than grain fed meat if you can. However, if you have lot of systemic inflammation, you might also get into the territory of having histamine reactions a lot- and fish, seafood and meat are all high in histamine- and the histamine levels rise as the meat/fish etc gets older. So this means as fresh as possible and no frozen, plus finding an omega 3 supplement that is vegetarian source, preferably algae, rather than fish oil. The low histamine chef's blog is good on this. Gentle, not strenuous, exercise lowers inflammation too, as does managing other sources of stress, reducing synthetic chemical products (make up, cleaning materials, no fake foods). Being as organic and free range as possible does too. Getting enough vitami D from a little bit of sun exposure works too.

I can't have gluten and most other grains, dairy, eggs, nuts, lettuce, strawberries and any fodmap foods. It is really restrictive from one way of looking at it, but itis also really simple from another way of looking at it. So lots of fresh fish/seafood and rice are my staples, along with fresh herbs and green leafy vegetables. I can have chicken though, but would suggest lean grass fed beef and free range pork as alternatives. Also maybe look into lean wild meats like venison, they can be really healthy.

I now eat, basically white rice, white potatoes, coconut oil, olive oil, fresh fish, meat, game and seafood, herbs, spinach, rocket, lemon zest as the basis of my diet. Somethings that seemed really overwhelming has turned into something really simple and easy- since I focussed on what I could have and getting the best quality and freshest of that, rather than thinking in terms of what I can't have. Cooking is simple, quick and easy. I can sometimes have a small quantity of other fruits and vegetables, but a tiny quantity e.g. a tablespoon or two and not everyday (my safe list is blueberries, peppers, courgettes, . I can have a wee bit of dark chocolate once a week or so. I need to do 40 minutes of low impact cardio everyday- no more, no less. I avoid stress like the plague.

It's not cheap and it's not easy to get your head around. But when you do get your head around it, it is actually really simple to do in practice- I feel free of the constant obsession with food that our society has.

And you can get no added sulphite wine, so it is possible to have the occasional glass. And Chase make vodka/gin from potatoes and apples rather than grains if you prefer a spirit.

Good luck.

nobodybeperfect Thu 13-Aug-15 23:54:24

As awful as it is to say, it's nice to know I'm not the only one suffering!

I've been quite poorly for about 2 yrs with digestive issues, stuffy nose and cough and really bad skin. My GP had ruled out coeliac because I wasn't losing weight (actually quite over weight). But once I cut out gluten everything improved, even my mood which I hadn't even realised was an issue! Milk also seemed to make me ill, which my GP stated proved IBS. Now chicken seems to be another trigger although my GP states it's unlikely to be chicken making me ill. I also get the tingly lips, but so far I've only identified strawberries and apples as the cause.

I'm finding the somewhat limited diet ok, other than the cost!

But I'm interested in the allergy aspect. I have an apt with gastroenterology in a week, which my GP thinks will confirm I have IBS, but I'm not convinced. Should I ask for allergy tests? Am I likely to get them on the NHS? Any ideas?

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