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Hi... Just Diagnosed :-(

Storm

By Storm
in Coping with Celiac Disease

Recommended Posts

Storm Apprentice
Storm
Posted

Hi everyone...

I live in the UK and last week, I was diagnosed with celiac disease.

I am 34 years old and for the past two years have suffered stomach issues with keeping food down etc.

Since December 2008, I have lost 4 stone (56 pounds) and 10 inches off of my waistline. I did not know why.

Three Doctors later, I was finally told what was wrong with me. The Doctor was brilliant, spending 40 minutes with me and telling me what I was finally suffering from.

I am currently in the USA visiting friends and I flew out the day after I was diagnosed. She has been SO SO fantastic with helping me adjust my diet.

I am heading back to the UK this week to start my new diet and am totally dreading with it as I live alone and work shifts. I know I am going to struggle. Since going gluten free, my weight loss has slowed down and my sickness has all but stopped, but I am afraid that I will not be able to cope with such a HUGE diet change...

Sorry to have bored you all with my life story, but I love the layout of the forum and I hope I can get some help to deal with it...

Thanks for listening....

Scott

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K-Dawg Explorer
K-Dawg
Posted
Hi everyone...

I live in the UK and last week, I was diagnosed with celiac disease.

I am 34 years old and for the past two years have suffered stomach issues with keeping food down etc.

Since December 2008, I have lost 4 stone (56 pounds) and 10 inches off of my waistline. I did not know why.

Three Doctors later, I was finally told what was wrong with me. The Doctor was brilliant, spending 40 minutes with me and telling me what I was finally suffering from.

I am currently in the USA visiting friends and I flew out the day after I was diagnosed. She has been SO SO fantastic with helping me adjust my diet.

I am heading back to the UK this week to start my new diet and am totally dreading with it as I live alone and work shifts. I know I am going to struggle. Since going gluten free, my weight loss has slowed down and my sickness has all but stopped, but I am afraid that I will not be able to cope with such a HUGE diet change...

Sorry to have bored you all with my life story, but I love the layout of the forum and I hope I can get some help to deal with it...

Thanks for listening....

Scott

Hey Scott

Welcome. I"m glad you posted. I'm newly diagnosed as well (only a couple weeks into this thing) so I get how overwhelming it is. I empathize with you.

I"m 32, living in Toronto. I also had some very rapid and substantial weight loss and have felt really miserable for some time. The good news is, we can achieve wellness if we follow this 'diet.' And this board is great -- It helps to know we're doing this with other people who are supportive.

Adjusting to the new diet was really difficult for me, but it is getting easier. I was at such a loss for the first week...just couldn't figure out what to eat and ended up going hungry a few times (lol). Not fun.

WRT shift work: While I don't do shift work, I do have a hectic job and am not always in the office (stuck in court for the day or something) so I make sure I have lots of almonds for protein, nuts, cheese slices, apples, bananas, and homemade trail mix with me. Find some snacks that are gluten-free that you like and keep them with you. That way if you're stuck you have food with you that you can munch on.

For general eating, keep it simple -- vegetables, potatoes, meat (if you eat it, I don't). The grocery stores here in Toronto tend to have gluten free stuff (frozen, dry, etc) in the organics section of the grocery store so go to your local grocer and check out the organics sections(s) for gluten-free foods.

All the best Scott! Let me know if you want any recipes and post any/allquestions. I"m a newbie so don't know as much as some of the folks who have been dealing with this for a long time, but I find interacting with folks on the board helps me so I"m more than happy to chat whenever.

K-Dawg

Storm Apprentice
Storm
Posted
  • Author

Thanks for the very warm welcome!!

I am a serving police officer on shift work so finding a decent diet in London at 4am proved impossible!!

I am struggling to be honest, the weight loss is still continuing although nowhere near as much. The sickness and tummy issues are still very much alive though :( .A few years ago, any food was fine with me. Now, I have to adjust my diet and be very careful what I eat and it is SO difficult.

I forgot earlier and had a bottle of beer, which, shall we say did not stay down for long (less than 20 mins) ... I seem so sensitive to all gluten based foods at the moment which is making me feel down and sad. I never realised how many foods that I used to eat are gluten based, but I am pleasantly surprised how much there is around now I have to go gluten free.

I also suffer from insomnia which on shift work is not good, but I am scared now I have changed my diet as to whether its going to get worse?

Thanks for the tips, I will try and find some recipes that I can make quickly ready for work etc.

Keep in touch! Hope it all goes well for you :)

kbtoyssni Contributor
kbtoyssni
Posted
I forgot earlier and had a bottle of beer, which, shall we say did not stay down for long (less than 20 mins) ... I seem so sensitive to all gluten based foods at the moment which is making me feel down and sad. I never realised how many foods that I used to eat are gluten based, but I am pleasantly surprised how much there is around now I have to go gluten free.

I also suffer from insomnia which on shift work is not good, but I am scared now I have changed my diet as to whether its going to get worse?

It's so easy to forget in the beginning and accidentally eat something containing gluten without even realizing it! It takes time for this to become second nature. I'd be inclined to think the insomnia will get better on the gluten-free diet. A lot of the little things that are wrong with people gradually go away after going gluten-free. I suffered from chronic fatigue combined with insomnia, but both have gone away now that I don't eat gluten.

Welda Johnson Newbie
Welda Johnson
Posted

Hi Scott,

Welcome to the group! I want to encourage you in your new journey, and let you know that life does get easier, the longer you are on the diet. It's as though we get new eyes, which focus diligently on ingredient labels and any foods which are around, in order to help us become healthier each and every day. I hope you will begin sleeping better, and I wanted you to know that my sleep has improved so much since being on the Celiac diet. As you go through the stage of "letting go" of your previous lifestyle, sadness is to be expected. I think we've all gone through it. I wish you the best, and hope that you will continue to post here and let us know how you're doing. Always, Welda

Tallforagirl Rookie
Tallforagirl
Posted
...I am heading back to the UK this week to start my new diet and am totally dreading with it as I live alone and work shifts. I know I am going to struggle. Since going gluten free, my weight loss has slowed down and my sickness has all but stopped, but I am afraid that I will not be able to cope with such a HUGE diet change...

Hi Scott,

It does seem really overwhelming to start with, but I promise it gets easier and easier. As others have said, the best thing is to be prepared. I bring my lunch every day to work and nuke it in the microwave - I usually just make extra at dinner and bring leftovers. (Note: this does not work well with gluten-free rice pasta which is horrible the next day).

Though I am a nine-year expat living in Melbourne, I often drop in on this UK Coeliac forum: Open Original Shared Link and there are some great people on there who can provide you with advice about gluten-free products in the UK and tell you how you can get all sorts of goodies on prescription.

Apparently they have just brought out some fantastic new "just like real bread" bread in the UK, called Genius, so you have been diagnosed just at the right time. You can get it only at Tesco right now.

It's a good idea if you get an appointment with a dietician who is well-versed in the Coeliac/gluten-free diet at this stage, so you know how to read labels to work out what you can still eat, as much as what you can't.

Best of luck.

Nikki69 Newbie
Nikki69
Posted

Hi Scott,

Like you I was diagnosed last week and kinda feeling overwhelmed with it all. I live in the UK and came across this site so will be doing some reading as not got my head around it at all! lol

Glad you have a friend that is helping you deal with it as it certainly isn't a case of cutting out bread and pasta as I discovered yesterday!

I, too suffer with insommnia and fatigue but have been told it will get better.

I ordered a book from Amazon, Coeliac for Dummies ( me not you! ) so hoping that will help get my head round it.

Enjoy the rest of your trip and try cider, that is gluten free ;)

Take care Nikki

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Storm Apprentice
Storm
Posted
  • Author

Thank you to all who have welcomed me. This is SO much harder than I first thought. We are going out to a restaurant tonight and I have had to look at the menu online in order to select my food before I get there...

The restaurant does a gluten free menu, so luckily, I will have some variety.

I am struggling with all this, feeling very down and sad at the uphill challenge that awaits me when I get back to the UK from my holiday.

Thank you again for the warm welcome, it's so reassuring that I am not alone.

Nikki69 Newbie
Nikki69
Posted

Hiya Scott,

Hope you have a lovely meal tonight.

I had cheesy mash today as everything else I looked at in my house had gluten in it!!! Will be so glad when the book arrives from Amazon as I feel totally lost with this like you.

Thank God for the internet hey, this forum and friends like you have there.

How was the meal??

JeriWB Newbie
JeriWB
Posted

Hi. I know how the new people feel in terms of sadness and being overwhelmed. I think some fatigue is a result of the reality hitting home. I finally baked some biscuits that were edible after failing miserably at pizza and pancakes. I ate them anyway because I was hungry like none other, but still...

So, I'm glad this forum is here. I have become such a bore at dinner parties and other gatherings. I'll be glad when I'm more used to this and not so obvious.

Hang in there, ya'll. It's got to get better. We're jolly, amicable people, right?

happygirl Collaborator
happygirl
Posted

Storm,

Welcome to the board. I hope you'll find lots of support here, and get ideas for how to make the transition easier.

We have quite a few members from the UK here, so hopefully they will chime in and be able to offer you specific help.

Let us know what you need - there is a wealth of great information, and always someone here to offer information, resources, and support.

Its a tough adjustment, but I have no doubt you will do well. We've all been where you are.

Storm Apprentice
Storm
Posted
  • Author
Hiya Scott,

Hope you have a lovely meal tonight.

I had cheesy mash today as everything else I looked at in my house had gluten in it!!! Will be so glad when the book arrives from Amazon as I feel totally lost with this like you.

Thank God for the internet hey, this forum and friends like you have there.

How was the meal??

Hi Nikki....

The meal in itself was nice, but even though I specified the fries to be unseasoned and the steak the same, it was not done. The manager came to the table after the meal and admitted that the fries had been fried in the same oil as the seasoned ones and the steak had been cooked on the same grill as the seasoned steak. He apologised profusely, took the price of the meal off of the final bill... but I came home and was promptly rather ill for a good 20 mins :( :(

The restaurant withdrew its gluten free menu last month due to the different types of cooking facilities that were required. I hunted through the menu and all I could find was one item from each serving that was ok for me.

:( oh well... lesson learnt about that restaurant and the way they cook their food and prep it.

Nikki69 Newbie
Nikki69
Posted

Hiya Scott,

I'm really sorry the meal didn't turn out like it should, they shouldn't have done that to you :angry:

With all the research I've done so far I've learnt it is the hidden gluten and the cross contamination that's going to cause problems :(

Think I'll be eating cheesy mash again for tea as least I know that is safe until I can get to the shops tomorrow for some salad!

How many days have you got left in the USA? Hope the weather is much better than here. Enjoy the rest of your trip, don't let food take it over, we can deal with that when you get back home.

Take care, Nikki

Storm Apprentice
Storm
Posted
  • Author

I have just extended my stay in the USA for another three days !! YAY for me!!

I am back at the weekend and then have to empty my cupboards and start all over again :(

My 10 yr old son will be with me this weekend, so a visit to the local supermarket will be in order. He is very good at ingredient spotting as he is a keen amateur chef, so is very aware of the salt and fat content in most foods. It should be an adventure!!

Nikki69 Newbie
Nikki69
Posted

Wow lucky you!!! :D We had a bit of sun here today but nothing much.

A good attitude to have, seeing it as an adventure and one with your son.

I managed a 2nd day of being gluten free though so bored of salad!! My youngest son ( 11 ) asked me if I was going to eat anything else lol Think I need to experiment with some recipies :rolleyes:

I actually got told at work this morning I looked well so I must be doing something right!!

nikki-uk Enthusiast
nikki-uk
Posted

Hi Storm and welcome!!! :D

A quick post --- but wanted to say that I also am from Essex (East London border)

It can feel overwhelming at first, but it DOES get easier, life just has to have a little more planning ;)

Please feel free to ask any questions or PM me, also , have you looked at this Brit site for coeliacs?? .... it might give you some pointers :)

Open Original Shared Link

GFinDC Veteran
GFinDC
Posted

Hi Storm and Nikki,

Welcome to the board and the gluten-free life! I found that it much simpler to start out by not buying much processed food, saves a lot of time reading labels. You can buy rice or quinoa or buckwheat or amaranth or teff or corn and use them. Usually not a problem except sometimes if you buy from bulk bins there is a risk of cc. Rice and veggies and meat can keep you going for a while and it is easy to make. I like to make guacamole for dip with corn chips. And corn tortillas are fine for roll-ups. Some of us have problems with dairy and oats at first but not all of us, it varies. There is a recipe forum here that has lots of food ideas, including a long dessert thread. You might want to check out some vitamins also, like sublingual vit D, and some B vitamins. Sometimes celiacs don't absorb them well at the beginning due to gut problems. I have insomnia whenever I get cc'd with gluten or dairy myself. For the most part it is better now since at least I know what kicks it off. I take a little melatonin for insomnia if I need it, but not always. Look around for some threads on enzymes and probiotics too, as they may help as well. Don't forget to check your meds and vitamins for gluten and dairy too if you decide to avoid that also.

Hmmm, sounds harder than it is really. Once you have done the diet for a while it should get easier. Like anything there is always a chance for errors though.

GottaSki Mentor
GottaSki
Posted

Welcome Scott-

I'm at day 41 post celiac diagnosis and boy - it's been a hell of a ride. Our house has settled a bit and I have become very good at making sure I pack a lunch and or snacks whenever I go out...makes it a bit easier to be sure I have food with me...don't always use it but have it there to quell the anxious moments when trying to figure out a new menu or visiting friends.

This board has so much info...it's become our homepage on our computers so my family or I can quickly check if we have a question about an ingredient, product or restaurant.

Good Luck and safe travel back home!

-Lisa

Nikki69 Newbie
Nikki69
Posted

Hi GFinDC,

Thanks for warm welcome and the advice.

I am slowly reading the forum. When I forst got diagnosed I thought I could ignore it but that soon went out the window :rolleyes:

Even though I haven't been eating that much the last 3 days as not sure what to it has been great not being ill :D

Now I just got to get my family used to the idea!! lol

Storm Apprentice
Storm
Posted
  • Author

Thank you guys...

The welcome has been great and it's so reassuring to know we are not alone!

Been really ill tonight ( see this thread Click me )

Can't understand why though. Hoping the sickness will stop overnight..

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