My life with galctosaemia...

[Caroloujo]

Hi.. as some of you may know ive got galactosaemia( few on here also has it), i just like to tell others bit about it.....It's a life long condition and have to avoid milk (lactose is the main one) and any other dairy foods...im 39 and any bout 4 years ago i discovered the soya foods from my dietitian....When i was a baby i was very poorly, if i had milk I was sick and it hit the other side of the room.so i was told..I had jaundice too, and it was one of my doctors that found out it was the milk(mums breasting me then).....
I was also very constipated as a child, and was on vitamin tablets and medicene(which was disgusting can taste it even now..lol)...Mum used to get the formula stuff (from America i think) and heat it up , and aparently it had a disgustingly smell to it....In my teens I kept going for regular blood tests for the lactose levels, which always came back OK....At the dr's(hospital) where in there for quite a while sometimes, seeing if i was ok, and asking me if i was keeping to my diet (which i was)....It is only recently that i dont have to go to the dr's(hospital) for blood tests, just go to my GP if i need any bloods for lactose levels doing....
With the galactosaemia it effects the eyes,overies, and kidneys...So far it's just my overies(they have nearly stopped) I don't get many monthly cycles no more, and one point the dr mentioned an early menopause...(I used to get hot flushes too)...This is how I remember things but there could be more i dont remember....That's it really, my life with galactosaemia...Oh I also had trouble in school (maths especially) but i was quite good in english and with spellings....I couldnt concentrate much in some lessons, and had trouble doing tests, exams....Thought i'd share all that with you. now i have......:lol2:

[Caroloujo]

Just wondering how Bella is getting on with her son Mac ,cos he's got galact.. too....Hope he's well....

[zoefruitcake]

That was very interesting, thanks for sharing. It's got me wondering if my early menopause (in my late 20s) is in anyway connected to my total inability to cope with dairy.

[bella]

Hi shakylou. Mac is fine, thanks for asking.
I have been busy lately so havent been on the computer.

He was born on the 16 dec 2002. He was constantly sick after every feed, I was feeding him, and getting yellower by the day. By xmas eve we were back in hospital. The doctors hadnt a clue what was wrong with him. He was being tube fed as he was too weak to drink himself and we were still giving my milk and formula as well. He lost a pound in weight and looked all shriveled up and wrinkly like a little monkey. Mac had bruises on both feet , hands and his head where the nurses kept trying to take blood, and failing. It was horrible, we honestly thought he was going to die. Being xmas didnt help as it delayed the blood tests.
Our other son, James who was 5 at the time, was pasted from family to friend. it was a shame for him.
Mac was diagnosed 4 days later through a urine sample. We had never heard of galact. but were so relieved to know what was wrong. He was put on infasoy and the improvement was amazing.
Mac is now 3 and a half and doing really well. There are all kinds of complications that can come with having galact. as shakylou has said. Upto now, touch wood!! Mac is showing none as far as we can tell. Theres plenty of time for them as he gets older.

[rebecca c]

Shakylou - thanks for sharing that. It is interesting. I work with kids who need extra learning support so that is always worth bearing diet in mind.

[bella]

Hi shakylou.
I havent been on the computer much, in fact all I seem to do is read the new posts and then go to bed!

I read earlier tonight that you have lost more weight. Well done and keep it up.
Was it your grill/oven/microwave that was broke? Is it fixed yet?
My oven is still out of action. I tried grilling oven cook garlic bread last week and smoked the house out.
I have managed to grill yorkshire puddings though. Not for Mac!!


We have a house guest. Another dog. We already have 2 of our own at home and 2 cats. We have a sheltie staying for 3 weeks! Our kennels are full and we have done it as a favour! Must be mad.

take care.

[Caroloujo]

Hi Bella and everyone.....Yep me lost more weight, but im on hols this week so im cheating a bit...lol.....Walking loads still thou......Yea it was the grill that still dont work, man not got the right part for it cos an oldish make......
You got your hands full then with all your dogs n cats, good luck with new dog....Nice to hear from you...Hope Mac ok too with his diet, Asdas quite good for soya based stuff, and i go to holland n barrets too, not that many shops round here for dairyfree stuff, so i just stick to Asda....:)

[goose]

How is the weight loss going shakylou?

[Caroloujo]

Hi goose, and everyone.....Well weighed again on Fri, and still the same 8st 11.....Still not eating any junk stuff but have had the odd frys creams.....Seemed to be slowing down now, but i happy with what i achieved....:)...Keep you posted if i lose any more...

[matt]

well done. it is a normal thing for the weight to stop being lost after a while, your metabolism slows down. keep at it though.:)

[goose]

Great stuff, keep it up, as long as you feel good for it.

[bella]

hi shaky lou.
8 st 11 sounds very light to me. How tall are you?
No matter how you want to lose, whatever you have lost is really well done on your part.
Coped with the extra dog. She was very well behaved.

mac is fine, apart from being a little s**t!! He is coping with diet and now asks if his food has milk or lactose in it. Not that he knows What milk or lactose is yet! He knows he cant have it so i suppose thats a start.

We are meeting up with another family on friday and their son is roughly the same age as Mac. it will be nice them.
Also, we have a friend whose little girl, age 2 in october, also has galacto. and they are coming with me.

I am looking forward to it.

Keep up the good work shaky lou.

[Caroloujo]

Me again,,,hiya.....Im 5' 3 in height.....Weighed again and lost another 1lb....Now 8st 10 which is now my ideal weight....YAY.....Hey Bella hope your meeting with other galac. family went well.....Keep us posted...

[matt]

congrats shakylou just don't drop it any further you'll vanish!!!:o :lol2:

[goose]

Yes you may disappear. But well done on the weight loss, do you feel better for it now? and was it worth it.

[Copper]

Well done on the weight loss. I am just under 4' 11" and still weigh less than 7 stone. I need to put a bit of weight on I think - how do you do that in a healthy way?

[Lan]

Well hi all,

I'm on a diet as well. Want to look good for a wedding at the end of the month. Having my dress altered and away to go. How's the boot hunting going Lydia?

I am also well on my way to becoming a dietician. Enrolling in college on Monday to study two evenings a week (3 hours on each) for 2 years and then to Uni to study dietetics for 3 years (1 year in work) fulltime. I can't wait and wanted to share it with you all.

Lan.:lol2::lol2::lol2:

[rebecca c]

Lan that is absolutely brilliant - at last there will be a dietician out there who gets it.

Go Girl!!!!!!:)

[Copper]

Good for you Lan. Good luck with the studying.

[Lan]

Thanks all.

Still have five years to go before qualifying, but what the hell. Can give you all free advice then. I knew I'd come in handy for something one day. LOL!!!!

Lan :lol2::lol2::lol2::lol2::lol2:

[matt]

lan i can save you the effort and answer coppers question.

my last appointment with a dietician was for how to put on more weight... her considered opinion? years of training.... thousands of tax payers cash to educate her.... EAT MORE! now why didn't i think of that?:eek:

[goose]

Behave Matt, dont spoil her dream.

well done lan hope it goes well and look forward to hearing your advice when you pass.:clap: :clap: :clap:

[Caroloujo]

Just quick update..Weighed yesterday(Fri) and still the same 8st 10....Which is good going slow but think keep to that now if i can......Been cheating abit lately too,,,,:)

[matt]

well done, slow and steady. life is too short to not cheat once in a while. as long as most of the time you don't :o :lol2:

[goose]

Well done Shakylou, keep it up, everyone is allowed to cheat now and again.

[Broxine]

Matt, if you want some extra weight you can have some of mine!! :lol2:

Is anyone on this site actually happy with their weight? Seems everyone is either trying to gain or lose it!

[goose]

Im more than happy with my weight, Fair enough ive lost some since i became dairyfree, but you never know when you need those love handles for the winter, and boy does it et cold up hear.:lol2: :lol2:

[fmgreig]

I'm still tring to lose weight I have lost 29lb since january, still a long way to go.:lol2:

[Caroloujo]

Hello everyone......And update on me weight.....I just popped on scales and im now 8st 8lb...Lost another 2lb....I wanna stay like this now, so how does one do that without putting weight on, or losing any more....Any ideas.....I shouldnt really lose any more now, and i been cheating this week too,,,,Also was me 40th birthday yesterday too.....lol

[goose]

Well done you, your doing very well. And HAPPY BIRTHDAY 40!! for yesterday, hope you had a great time.:band:

[Copper]

Happy Birthday for yesterday. :cheers:


I am happy with my weight. I possibly should be a bit heavier but then if I put any weight on it goes on the wrong places. I thought I might put weight on once I left work but it hasn't happened yet. I don't really sit still so I guess I burn everything off.

[bella]

Hi Shakylou.

HAPPY BIRTHDAY!!!
Bit late I know.
Did you do anything special?

Well done on the weight.

[Caroloujo]

Hi Bella and everyone....Went shopping to Chester with me sister and got loads.(perfumes, clothes etc)...Then got back to sisters and had a surprise buffet party that had no idea about they all kept that quiet...Was nice had good time, drinking me bucks fizz now so typing might be bit squiggly later....lol....

[goose]

Hope the buffett was all dairy free.:naughty: :nutter: your typing may not be the only thing a bit out of sorts.

[matt]

happy late birthday, you should have put it on your profile then it would have flagged up on the site.

well done on the weight. easy enough to stop loosing anymore, eat a little bit more and allow yourself a few treats. you will yo yo around your favourite weight but that is normal as long as it's not up and down by a sstone a time!!!:eek:

[bella]

Hi Shakylou.
Is your cooker fixed yet?
I bought my dad a George Forman the other year and he used it once. I have now claimed it and its ace!!
I have cooked alsorts on it and I am really really impressed with it.
My oven still isnt working! I thought about trying to change the element myself then decided against it. I cant even change a plug so i have no chance with the oven!

[bella]

hi shaky lou.
How are you/
Have you ever been on weekend away with the GSG?
My friend, daughter is 2 and has galacto, went on one last weekend.
She said it "was a real eye opener!"

[Caroloujo]

Hi everyone..im well and hope you are too...Yep Bella my grill is still broke...lol
No i didnt go on the weekend with GSG, too far for me, think i forgotton bout it,,lol.....Glad ya friend had good time on it....An update on me weight has been a few weeks, i put few pound back on , but now back to 8st 8lb again.....

[Copper]

Sounds like you are doing very well with the weight.

[goose]

Well done, the diet is going very wel indeed.

[bella]

Hi Shakylou.
How are you doing? Hows the diet going?

Dont forget christmas is nearly here so you are allowed to cheat if you want to.

Do you do anything special on the 25th?
We stay at home and I cook so I know that Mac can eat everything.
We have moved now and i have an oven that works!!!!!!!!
Its ace but i keep forgetting that it actually works!
I will still get my dad to cook the turkey though1

Take care.