Wheat & Dairy Allergy Test/Diet

[suedonim]

My sister has just been diagnosed as allergic to wheat and dairy and put on a diet. I'm very concerned about her because she has lost about half a stone in a couple of weeks and has no energy. She's painfully thin at the best of times (5ft 10in tall and 8.5st) and most certainly does not need to lose weight.

My sis is 59 and her history is that she's had severe stomach pains, sometimes accompanied by diarrhoea, for a couple of years now. Lots of hospital tests have revealed nothing untoward so she saw a private nutritionist. There, she was given some tests that involved 'running something over' sis's fingers and vials of possible allergens. Is this a bona fide test, as I've never heard of it?

As well as avoiding wheat and dairy products my sis has been told to avoid a whole long list of things including such things as broccoli which we'd normally consider as being Good For You! Surely sis shouldn't be losing weight at this rate and feeling so weak? I'm concerned that her bone strength will be compromised esp as calcium supplements make her vomit.

Is my sister being taken for a ride or is this a regular treatment? TIA for any help/info.

The only thing that sprang to mind for me was coeliac, but I am pressuming that if your sister has already had loads of tests, that they would have ruled that out already. I'm sorry that I have not got any advice really, although i have never heard of the test your sister had done.

I've heard of tests like this and know people who swear their health improved dramatically after them. A medical test involves vials of allergens but your skin is pricked with the allergen and they wait to see if a wheal forms. Other tests can involve holding the vial, but they aren't used by qualified doctors.

Diarrhoea can be caused by a dairy or wheat intolerance that wouldn't show up on any test other than a food challenge. Has the diarrhoea stopped? If it has and it restarts when she eats dairy/ wheat or both then she does have a food intolerance. You have to reintroduce the food to test if there really is an intolerance, although if the diarrhoea has stopped she may not want to do that. She may not have a problem with both wheat and dairy but just with one of them.

If she feels she is better on the diet then maybe encourage her to see a nutrionist to help her find substitute foods? She should be able to have rice cakes, for example, which would help with the energy/ weight loss. She can cook with gluten free flour and xanthum gum. HTH

It does sound like coeliac. The first stage of diagnosis is a blood test, which if positive is followed by a biopsy. What is brother in mumsnetspeak? DB? Anyway, he had similar symptoms, was diagnised with a kidney stone. A year later, when that had gone but the symptoms had not, they tested for coeliac. Hey presto! But damage to guts menas he still needs B12 injections.

Many GPs do not think of coeliac disease, so check whether she has been tested for this.

Thank you so much for this info, it's helped make things clearer in my mind. But is it possible to develop coeliac disease at my sister's age, 59? And is an allergy/intolerance to wheat and flour the same as coeliac disease or are they separate conditions?

Sis apparently is going to see her own Dr today, so I hope that will clarify the situation as well. I think sis is doing to right things wrt to the diet, in that she's making her own bread and buying stuff like rice cakes but the weight loss is worrying. Some of the problem is that sis won't question anyone in authority, hence my worry about her being led up the wrong path. And I'm moving abroad any day now and won't easily be able to communicate with her.

Bump for more opinions, please.

I'd think coeliac disease would be something that a doctor would diagnose, not a private nutitionist.

It sounds like she might have IBS, rather than coeliac? Dunno.

Is the diet making her symptoms get any better? Can you look at the diet and recommend hi-cal, hi-fat, hi-protein things she's allowed and should eat?

Her symptoms do sound like the symptoms of coeliac disease, but probably also the symptoms of many conditions. WRT developing it at a late age, has she always had some digestive issues? She may have had it all her life, without realising. I know this does happen. I don't know whether it can start at a later stage in life though.

I can't see why stopping wheat and dairy would cause such a dramatic weight loss though, unless it is the type of foods she has cut out as a result - e.g stopped eating cakes and chocolate as they contain dairy.

Coeliac is an intolerance/allergy (not 100% which) to gluten. Gluten is in wheat & oats (and other grains to greater and lesser extents). As flour is usually wheat flour (so with gluten in), that is why she can't have flour on that diet. Some people can tolerate small amounts of gluten (like oats has), but not lots (like wheat has), hence some people describe their intolerance as wheat intolerance rather than gluten intolerance. My DS will vomit with quarter of a Nairns pure oat cake, so can't tolerate any amount of gluten - hence gluten intolerance (being tested for coeliac disease). I hope that makes sense!

Is she having dairy alternatives - rice milk, soya milk or soya yoghurts (like the alpro ones).

HTH

Okay, as well as the wheat/dairy stuff, sis has also been told to cut out broccoli, courgettes, cabbage, peaches, apricots, tomatoes, plums and similar. Surely they aren't connected with coeliac?

Laura, no history of tummy troubles - sis has always had a cast-iron stomach until recently. She has indeed cut out everything like cakes, chocolate etc. She was a great one for homebaking but has stopped making all the things she loves. Thanks for the explanation, it certainly did make sense!

I also think it might be IBS, NQC. This all started about two yrs ago after the sudden death of her dh, which she's still struggling to get over. I really think there's a psychological problem in there somewhere. What sort of hi-cal/fat/protein should she be eating? She's on a limited income so is finding the replacement foods expensive, too.

It's really worrying me but because I'm moving on Tues I can't really take it much further. I've told my mum what's going on and she's going to follow it up with sis's daughter.

suedonim, I am having tests for coeliac at the moment (don't think I've got it but they are running the tests to rule it out).

She'd need to have a blood test done by the doctors and then to be 100% sure, they sometimes do a colonoscopy (think that's it) because that's the only 100% certain test.

To be honest, unless her tests were done by a doctor or a consultant they are possibly not medically accurate (was this nutritionist linked to the hospital/consultant?). Some of these tests do have an element of truth but I would be very careful about avoiding or eliminating foods on the back of tests that are not 100% medically certified.

Coeliac disease can just develop (so I have been told) and it can be there from birth. It does sound a lot like IBS but could be coeliac but I imagine the hospital tests would have looked for coeliac disease?

Would it be possible for her to get her blood tested for allergies through the hospital/doctor?

the weight loss is a bit worrying?

is it possible she has just stopped enjoying food and is a little bit depressed?

I read about a case in the paper the other day about a woman who had nausea/vomiting for ages (like months) and they spent a long time in hospital looking for causes and couldn't find anything. One of the doctors then thought that perhaps something had gone amiss with the part of the brain that was to do with vomiting and she had got into a pattern and put her on a low dose of antidepressants and lo and behold, after a few weeks she felt much better.

Loads more interesting stuff, thank you! According to sis, the Dr said she'd have to have private allergy tests as the NHS doesn't do them. The more I'm learning from MN the more I'm suspicous of this person she's been seeing, tbh. I'm not happy she's being treated correctly. And yes, I do think she is a bit depressed as well but she's always had a hearty appetite and she still enjoys cooking & eating. I shall mull all this over and try to work out what to do next. Thanks again.

Your sister might be diagnosed with IBS if she saw an NHS consultant but she would then be advised to try excluding dairy. As we age we become less able to digest lactose - and that causes diarrhoea. She may not actually have a problem with wheat at all. Although coeliac disease can start at any age (see webpage below) it shouldn't be assumed she has both a dairy and wheat problem. In fact unless the diarrhoea has stopped and restarts when she reintroduces the food I wouldn't trust the tests she has had at all. I've known people get excellent results from alternative practioners, but anyone suggesting so many food groups are excluded permanently is probably not one of the good ones.

www.nutrition.org.uk/home.asp?siteId=43&sectionId=403&subSectionId=321&parentSection=299&which=1

This is an excellent book about allergy, might encourage your sister to get another opinion.

www.amazon.co.uk/exec/obidos/ASIN/1844001725/qid=1137827617/sr=2-1/ref=sr_2_3_1/202-7556245-3683823

I would be very concerned that losing weight could mean a more serious stomach problem so she needs to find out if she does have an intolerance quickly.

Today I've learned that sis is down to 7.5st. She saw her GP yesterday who has referred her to a dietician and also wants to see sis again next week, so it sounds as though the Dr is on her case.

Tatt, your post confirms my uneasiness with this 'nutritionist', I don't think sis is going down the right path at all. Btw, she has had loads of hospital tests which have ruled out anything sinister, thank goodness.

Coeliac disease can develop at any age. I was diagnosed at 44, but have heard of a 79 year old. It can be triggered by stress. One of the (many) symptoms is depression.

foxinsocks - the definitive test is not a colonoscopy, but from the other end, an Upper Gastrointesinal Endoscopy (or something like that) - they put a tube down my throat and cut a bit out of my intestines, then repeated it 6 months later to see whether I had improved.

Thanks, CK. How long did you have symptoms for before you were diagnosed? I'm interested that it can be caused by stress.

Hope you get some good news soon, suedonim.

fwiw, I had kinesiology (v alternative!), and lots of foods were diagnosed as allergens or not agreeing with me in some way. 2 of them have subsequently been confirmed by skin tests. Others were related (all foods containing moulds or fungi, basically, because I had a candida infection running riot inside me!), or easy to confirm, like a dairy intolerance that has been "proved" on many occasions when I have given way to hunger and eaten a biscuit in a meeting or something like that.

what I am getting at is, that diagnosing many foods does not necessarily mean that the nutritionist is a charleton. The safest thing might be to get a second opinion, from a personal recommendation if poss.

thanks clark, I didn't realise that (am due for my second set of bloods at the end of this month - hoping they will give a definitive result).

good luck suedonim - please let us know how your sis gets on.

I will indeed let you know how Sis gets on. All these replies have been v useful to get things sorted out in my head!

Sorry for the slow reply - the only chance I get to mn is during the lunchbreak at work (DW and DS hog the computer at home).

Suedonim - I did not have any obvious symptoms, but was tested because my brother has it (there is a 10% chance of siblings having coeliac). Looking back, I may have had it for 3-4 years before diagnosis, and the death of a parent coupled with redundancy may have brought it on.

fx - blood tests are not definitive. You can even get a false negative if you stop taking gluten products for a week before the test. Only a biopsy is definitive.