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Freya
09-06-2005, 03:11 PM
Hello!

I've been lurking here for a months - well, since I've become dairy free at the beginning of the year. This is my story........and the longest thread ever!

My name is Freya, I live in Manchester and have done since my uni days. I live with my husband, two cats and a motorbike (husband's, but with me as a regular pillion) My doctor and dietician think I have a milk allergy (to the protein - not lactose intolerance) but they have (frustratingly :angry: ) been unable to help me more than that and seem unable to answer my questions.

I'd had a series of seemingly unrelated health problems, which now, looking back, actually go back a few years. It started with severe heartburn about three years ago. I went from never having had it before to very regularly, to the extent where I took several pregnancy tests just to be sure :unsure: . I went to the doctor and they told me to take rennies and give up smoking, drinking and spicy foods! I just got on with it and I suppose that I got used to it and learned to manage it and avoid the things that gave it me the worst. Looking back, my husband says he feels very guilty about it now, as the best cure for heartburn is milk and it was preferable to taking chemicals, so he was always making me drink the stuff! The foods that gave me heartburn were often weird - like baked beans!

Then about a year and a half ago I started waking up in the middle of the night with the most horrendous stomach cramps, like the worst period pain ever - I didn't happen very often to start with, but it started happening more and more frequently and always during the night. That was until we went to New York for our first anniversary last November. I suffered so badly that the I was getting the cramps during the day and could hardly walk. Having spent the best part of an evening doubled up in our hotel room, I agreed that it wasn't normal and would go back to the doctors. (By this stage, I had already worked out that drinking large qtys of milk made my symptoms worse and I had cut down)

The doctor checked my stomach and said that it was probably IBS (There's a Surprise!! ) despite the fact that I have had none of the other usual symptoms of IBS. But they did do some blood tests, but they all came back normal.

Then the Friday night before Christmas I woke up in the middle of the night with a tight stomach and a tight chest and the most awful pain I could possibly ever imagine. My husband thought I was having a heart attack and called an ambulance. They also thought I could be having a heart attack so wired me to an ECG machine and took me in my PJ’s to A&E at 2am on the busiest night of the year! Whilst their they did another 2 ECG's and by 5am decided that what I had experienced was a severe acid reflux attack. Apparently a severe attack presents itself exactly the same as a heart attack and can last several hours (mine usually last 2-3 hours)

So I went back to the doctors again and asked to be referred to a dietician as I had a thought that it could be food related as I have been intolerant to MSG (makes me puke) for about 5 years and have suffered from migraines since I was 15 (Caffeine, chocolate and cheese). The dietician asked me some very strange questions – like do I clear my throat a lot? She said that my symptoms weren’t those of being lactose intolerant (I have a good friend who is and had already worked this one out!) but she thought it could be the cow’s mile protein, so she sent me away with a diet sheet and symptoms sheet to do a four week elimination diet. By the end of the third week I felt brilliant and really didn’t want to drink a glass of milk a day for three days as directed. It had convinced me and the results were conclusive.

This brings me up to February this year.

My symptoms seem to be getting more severe with even the smallest traces of dairy in my diet the longer I am off it, and this makes me very reluctant to experiment with what I can and can’t eat. If I eat something by accident, I get heartburn after every single thing I eat for about a week and a half and I have had a couple more acid reflux attacks, each one being worse than the one before and the after effects lasting longer each time. This has meant that I am still adhering to the strict guidelines of my original elimination diet.

I have been back to see my doctor and my dietician since and I think that they know that being dairy free has fixed my problems, but they don’t seem to understand why and my questions seem to be beyond their level of knowledge – I’m not quite sure where to go from here……. The dietician did say that I needed to try some foods with lactose in, but no protein to prove their theory. She suggested yogurts, which confused the hell out of me :unsure: .

One other thing to know about me is that I am a huge foodie. Both my parents are chefs and I have grown up around food. It seems almost cruel for someone so into food to suddenly not be able to eat all those yummy things. The one thing I miss more than anything else is butter. Until all this happened, I had real butter in my sandwiches everyday and cooked with it all the time. It is a big leap to go from real butter to vegetable spread :bleh: .

It seems to be me to be one of those really unfair things in life that as a person that has always eaten a healthy and balanced diet and cooked all my own food and never really eaten processed foods, that I am the one to get food allergies/intolerances. No fair :( .

On the up side, as we cook all our own food, the adjustment hasn’t been too bad. I dread to think what it would be like if neither of us could cook!

The thing I find really hard is eating out – something that was a huge passion for me. There are just too many assumptions made on both sides. If I tell them I can’t have milk, it doesn’t seem to include butter in their heads - vegetables come served coated in the stuff. If I ask if the chips are vegan, they go to the kitchen and ask and then come back and say that no-one can be sure for certain! Grrr! It is not always possible to eat at home if you are out and about. Thank God for Fast food places that publish this info on the Web (Special mention must go to Burger King, where I can eat almost anything that doesn’t come with cheese! :thumbsup: )

The positive side to being dairy free, other than getting rid of all my symptoms. I feel healthier – comments from loads of people, have loads more energy, I’m happier. My skin is the clearest it’s been from spots for about 15 years (including while being on medication for acne before my wedding!) I’ve had less colds and the ones I’ve had have been far less snotty and much shorter and I’ve not had my usual early bout of hayfever this year. To top it all, I’ve lost over 1 ½ stone in weight since the middle of January (partly through digesting my food better and I guess cutting out butter, cream, cakes, puddings, biscuits and ice cream!)

It’s been brilliant and it has all been worth it!
:D

Copper
09-06-2005, 05:31 PM
Welcome Freya - love the name by the way. Wow what else can I say? I am lucky I guess that I am lactose intolerant. I do have other food allergies - I gain a new one every now and again :( When I was in my teens I felt really ill most of the time and decided that I had an allergy. I don't know why but I fixed on eggs - my mother was always cooking us breakfasts as she said they were better for us than toast! To test my theory out I did not eat an egg for two weeks and I felt so well it was brilliant. To prove it was really the eggs I then had to eat one and the symptoms appeared a lot faster and I felt awful. Now when I think I have a new allergy I cut out the possible offending food and if I feel better then that is enough for me, I am not going to make myself ill by trying that food again.

Eating out - yes that is very difficult. I can get round this by asking for non dairy but if I am not sure I can at least take the lactase enzyme in a pill. I have been ok so far but then I only eat out about once or twice a year. An allergy to milk is much harder as you just can't get round that problem and in some cases it could be life threatening. Somebody on this site (sorry I have forgotten their name) has that problem and carries an E pen.

I have had lactose intolerance since birth and then on and off for years. It is very bad at the moment and I don't see that improving now. I don't like food that much really and cooking is a bore - I wonder why I feel like that about food :)

Pam
09-06-2005, 06:13 PM
Hi Freya, welcome to the site.

My daughter suffers in a similar way to you and it wasn't until she was nearly 2 that I realised that her sleepless nights were caused by the stomach cramps she got from her milk supper. She also suffered terrible tantrums at 10am every morning which I also now know were caused by the cereal and milk at 7am. She was diagnosed by me and the doctors agreed. She has never been tested and I've given up on the useless dietician. I am assuming from her reactions and the foods she eats that she is intolerant to the protein in milk rather than lactose.

Once she went onto total milk exclusion she became much more sensitive to the smallest amounts of milk and we always knew immediately by the flushed cheeks that we had had an accident, followed 3 hours later by a screaming, red in the face, thrashing toddler.

I also gave up milk and my regular hives cleared up, as did the hay fever. I lost weight initially (but put it all back on once I discovered Green and Blacks and Booja Booja) and I rarely get colds and generally only when I have had a major lapse in my diet.

I don't know what foods to go for to avoid protein but have lactose (a dose of lactulose maybe?) as I thought that all milk derivatives contained protein but the lactose could be removed. You could do with a chemist perhaps or at least a very good dietician to tell you. I know that yoghurt does affect the make up of the milk protein but I am pretty sure that it would still contain protein. I have never pursued the lactose/protein issue with my daughter, we just avoid all milk products and milk derivatives to be on the safe side. It's a pain but you get used to it.

Anyway, welcom again, keep coming to talk to us.

rebecca c
09-06-2005, 07:15 PM
Welcome to the site Freya. Its good you have found the cause of your problems. I know I am intolerant to certain things (dairy, gluten salicylates and now possibly soya) and avoiding them makes me feel better but I am not clear on it in any precise way as I've had to work it all out myself. Also now my symptoms are getting worse so I am having to resort to more medication, but I'm still not convinced this is the answer and wont make things worse - I will have to try it and see.

My only idea with the lactose is I know pills are made with lactose including some homeopathic pills - you could try and see if a homeopathic pharmacy like nelsons or helios could supply you with blanks?

Its good you are feeling so much better. I had a meal at Terre a Terre in Brighton last night with the owner and she was saying how she is now wheat free and how so many more people are coming in with allergies and intolerences, she is a much more aware person than most but just as restaraunts had to adapt to veggies they will have to adapt to allergies and it is customer demand that will make that happen. Keep posting, I find the support and help I get from the site a positive and helpful thing.

paranoidangel
09-06-2005, 07:53 PM
Welcome to the site Freya. I'm lucky (although I didn't feel like it until I came here!) that I'm just lactose intolerant. I haven't been near a doctor with it though - mine are a bit crap at the best of times anyway.

I only discovered my intolerance a few months ago - but I wish my hayfever had cleared up after going lactose free - it seems to be worse than ever this year!

zoefruitcake
09-06-2005, 08:43 PM
hello and welcome :)
I am also allergic to milk rather than lactose.

Bet
09-06-2005, 09:14 PM
Hi Freya

My daughter who is 5 is intolerant to the milk protein which we found out when we realised that she was also intolerant of soya protein. The doctor said she may also be lactose intolerant but who knows? the dietician told me just to avoid all dairy products and everything had protein in. Now that we have eliminated all dairy and soya from her diet, the slightest thing upsets her. She was ill at the beginning of the week for 2 days after having been away for 2 days when we ate out several times - something she had must have affected her because she cried constantly for 2 days with stomach cramps and abdominal pains; we missed out on a nights sleep on Monday as a result. Unfortunately, the less dairy you have, the more it will affect you when you do have some.

Regarding the butter, I started to buy pure for my daughter when she was first diagnosed and my other daughter who is not dairy intolerant was happy to change to this almost immediately. My husband quickly followed suit but I resisted for a long while. Eventually, totally replaced butter with pure and now would much rather have this than butter - even on my jacket potatoes! Give it time and I'm sure it will not seem so bad.

ellsie
09-06-2005, 09:40 PM
Hi Freya! I too am allergic to milk protein and in my case this leads to anaphalactic shock if I have milk products. This is hives all over and swelling of my mouth nasal and ear passages, closing of my throat and asthma...can be fatal,so I carry an epipen all the time just in case. This only happened after I had not had any milk stuff for 6 months and tried to go back to it and my body just rejected it ,so if you do stay off it for a while then take care next time you try something.

I have had blood tests and skin prick tests which confirm my allergy for the docs, so perhaps you could try that. I was also told by the allergy doc in Leicester that in a true allergy it is normally the protein that you are allergic to and an intolerance is usually to the milk sugar,lactose. The only foods I can eat with milk in are deep fried like battered fish or doughnuts (i know not all doughnuts are made with milk) and I guess that the protein is changed in the cooking process.
Welcome to the site;)

cnc
09-06-2005, 11:36 PM
Hi and welcome :)
As far as I know I'm lactose intolerant. I know what you mean about the hayfever, less colds and less snot. They were the main things I noticed, plus less coughing and clearing of my throat.
The allergy tests- were they general ones or specific food allergy tests??
Eating out- I do this most weekends, go to places that make their food fresh, I find Indian restaurants are quite good, as they don't use many additives etc.. so things without yoghurt or cream etc..are ok. It really does seem to depend on where you go- pub meals seem to be one of the worst, they really don't seem to care. If you find somewhere thats helpful, just keep going back...
Hope you're going to stay and chat

matt
10-06-2005, 05:02 AM
welcome to the site. now you've stood up don't go off hiding again.

enough said re eating out. no easy solution. it's the middle ground that causes probs. fast food mcd's etc list dairy free...expensive resturants likewise ...pubs and cheap resturants seem to be the ones to avoid.

hope you find help and support from the mad house.:lol2:

Broxine
10-06-2005, 08:59 AM
Hi Freya! :bwelcome:

Glad to hear the majority of your symtoms are better now you are off dairy (personnally I've come to the conclusion that I'm always going to have something wrong with me!).

Eating out can be a pain - I personnally find it most awkward that if you ask for a dairy free meat free meal you tend to get a bowl of veg and I hate the stuff! I've found a few good places now - primarily mongolian restaurants where you select the ingredients you want and they cook it up in front of you - so you know exactly what you are getting!!! I am also a food lover and have to say the biggest thing I'm missing is desserts when I go out - its torture watching all my friends dig into chocolate fudge cake or profitaroles at a restaurant when the best they can ever offer me is fruit salad :(

ellsie
10-06-2005, 09:46 AM
I have just come back from Rome and I wrote a card out with the aid of a dictionary to explain my problem (b4 I saw the link to the card site) I was offered Spag and tomato sauce or steak most of the time but Rome was worth the boring diet,amazing place!

I have had blood tests and was tested for egg wheat and milk and I was shown as allergic to egg and milk,but as i had not noticed a problem with egg I carried on eating it.The skin prick tests were more general and I was tested for lots of animals,dust milk latex and anything else I could think of! Milk came up again as did lots of others. Blood tests were expensive to do when I had them done and it was after a lot of pushing they agreed to do them. This is all on NHS.:)