dani nero

I thought Sweden was very progressive with gluten free dining and knowledge of the disease?  

Far from it.. really far from it. 

Perhaps I should have been more clear about this earlier, sorry for the lack of information :-) I used to live in London 9 years ago, and I'm just going there to be with my family, not for tourism or experiencing the city. I used to have fun revisiting when my mother was alive, since we did all sorts of things together, but now that she has passed, I don't really feel like doing much there. I never revisited for more than a week however so I never had the need to explore what foods are available. I just want time to pass without stressing over safe food and without starving of course. 

Sainbury's, Waitrose and Marks and Spencer are all in close proximity to my dad's apartment where we'll probably spend most our time, so yes I'll be looking for foods there. I was just hoping to skip testing the products myself by asking if any other celiacs know of brands that they have not reacted to. I would like to avoid a reaction of possible. 

Speaking of the other food intolerances, I have none except for lactose. I avoid all the other foods because I can't control my weight otherwise. 

Thanks for your responses, and sorry if I'm asking for too detailed information

I guess I've just gotten used to the luxury of being home, where I don't have to be on the lookout in case someone contaminates something. I tried using kitchens in other houses before and it was really troublesome.. mainly since other people who are not used to having celiacs around (and even after explaining things to them) absentmindedly put things where they shouldn't be while I'm cooking.. They relocate my cooking things onto surfaces that have not been decontaminated or the other way around, and they can even prepare bread or whatever without thinking where they're putting that stuff. I just don't want to deal with the stress of being on the lookout all the time and worrying if some thing might go wrong.

You have made a very good point however regarding putting my health in the hands of restaurants.. but I actually never eat out in Sweden, at all.. and I wasn't planning to eat from restaurants in London. I thought that there might be some pre-made foods from supermarkets that someone might know about.. perhaps those are safer since they are packaged and have labels. Maybe I'm mistaken.

The only place I would dare to even consider eating from in London is Nando's since they have a good cross-contamination system and you can actually watch them while they grill the chicken. 

I just want it to be simple and stress free.

Hello forum dwellers. For the first time since going gluten free, I'll be away from home for more than 10 days. I'm extremely sensitive by the way.

For example, here in Sweden, I am yet to find a single swedish brand of nuts that will not cause a reaction. The only brands I don't react to are the imported american ones.

I'll be staying with my brother in London for 3 weeks. They offered to buy me a dedicated pot for cooking, but I'm not so keen on cooking in a gluten-containing kitchen to begin with, so my plan so far is to live on fruits and vegetables.. but 3 weeks is a bit long :-(

To make things worse, I avoid eating rice, corn, potato, soya, salt, sugar or any product which contains these foods since I'm always struggling with my weight.. and I'm also lactose intolerant. 

Can any UK residents who happen to be as sensitive as I am help me figure this out? I need to know of any safe nut brands which are preferably low on salt. What would really be a dream come true, is if one of the supermarkets offers ready made gluten-free foods such as grilled chicken or salads. 

I think that Nando's offers gluten free chicken, but I'm worried that living off a restaurant would be costly. 

Please rescue me :-)

Life is rotten isn't it. Doesn't feel like like celiacs will be part of the norm for decades. Awareness, change and adaptations are happening way too slowly. 

The fridge is full of goods all with Gluten, but you're starving and you haven't eaten all day.

No shops are open

 

Discuss your next decision here and your reasoning...

 

Seems to be my downfall alot. My general decision is given in to hunger pains and pray for a better tomorrow (it never comes)

Well, eating gluten is harmful, while fasting for a night won't hurt. Since shops would eventually open in the morning, I'd rather go hungry until then than ruin my life for a few weeks. A little hunger doesn't hurt, gluten does .. Just think of it as poison.. which it is if you're celiac :-)

Check out this YouTube video by Better Batter that talks about "Stuff People Say to Celiacs".  It's pretty funny and I think we can all relate! 

 

 

 

Have a great evening.

Awesome video. Every single comment in was said to me and even more

Their ignorance is the source of their bliss. You can put yourself in bliss too by not giving a damn about their opinions.

What is the worst that could happen when they roll their eyes.. will that make you lose a leg, an eye, your house? Nope. Stop caring, and live your life with the people who understand you.

Welcome, nice to meet you, and congratulations on starting your journey of healing :-)

It feels like "if you can't beat them, join them".

I am who I am. I don't eat gluten, and I never want to.. not after it has ruined 20+ years of my life. The world will have to accept that and make space for me, without this drug.

Let us know please!

I pray that she is doing well and not in any kind of discomfort

Dearest Dani, I'm shocked & very,very sad at this news. I know you love both of your parents with all of your heart. I remember you posting photos of your mom's knees with the rash on them & thinking/wondering if that was dh & the other things you mentioned that made you think that she & your dad both could be celiac. As well as their thoughts on the subject of you being celiac.

 

The only thing I can say that others have not is that I am sure I've read numerous times that heart disease is also one of those things celiac is associated with. But then it seems like heart disease is associated with everything.

 

Aw Dani, I surely wish I could be there to hold you & let you cry on my shoulder until there were no more tears left. I'm crying for you now. No matter how old we are when we lose a parent; we are their baby & always will be.

 

Tight, tight hugs  (((((((((((((((((((((((((((((((((((((((((((((((((((((DANI)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))

Thank you Squirming Itch (((((((((((((((((((((((((((((((((((((((((((((((really big tight hug)))))))))))))))))))))))))))))))))))))))))))))))))))))) I'm glad to see that you are all here!

Your condolences are very comforting. Truly, having a get together in real life would be like a dream come true. It's really great to see most of the people I met here are still active, and hopefully thriving.

This reminds me, I'm wondering how Rosetapper (laura) is doing? Any news? My email account was wiped clean. I have lost all the adresses and all the letters from last year :-(

Too much sugar (cakes, muffins etc) is bad for me and I can only take limited quantities of caffeine. Thanks, dani nero. It's important. However the level of anxiety I have had these last few days was a MAJOR thing...

There are som who suffer from anxiety for weeks after even a single minor cc :-( Sorry to hear that you're suffering. Hang in there.

Yep many of us have been glutened by pet food. In my case it was rabbit food. The risk does not only come from the food itself, but some traces can be on the pet's fur. Meaning that you have to wash your hands after petting.

I found gluten-free pellets for my bun now, which has worked well for both of us.

Being glutened definitely messes with my head and my temperment, so I do understand where you're coming from, but I have to say that gluten was not the only culprit responsible for my psychological problems. 80% of my anxiety went away when I cut sugar and caffaine. Have you tried that?

Thank you all for the warm responses, and may all our lost and missed parents rest in peace.

Let's look after ourselves for their sakes.

I've also read your feedbacks as well on medications and symptoms, they were very helpful thanks.

So sorry to hear of your loss. I think there are likely many of us who have lost parents to causes that may be linked to celiac. I lost my Mom young to cancer and lost my Dad last month. Since I have two copies of the same celiac gene both of my parents also had that gene. My Mom undoubtedly was an undiagnosed celiac. Her symptoms were the same as mine became before diagnosis. She also suffered for years. When I got my Dad's death certificate I found that he had bled to death from a GI bleed. I don't know if blood clots are associated with celiac but kidney issues can be.

I do know that my GI doctor told me that if I hadn't been diagnosed when I was I would have been 'one of those celiacs diagnosed by autopsy.

I know you are suffering and nothing any of us can say will ease your pain. Know that you are in my thoughts.

(((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))

I am so sorry for your loss (((((((((((((((((((((((((((((((((((((((((((really big hug))))))))))))))))))))))))))))))))))))))))))). This is just something that we will never get over and will have to learn to live with their memories. Yes I recall reading many posts by people who have lost parents from celiac, and I feel for all of them.

My father recently told me that he also has internal bleeding, and that the doctors don't know why. He's going to undergo some testing next month so I really pray that they would figure it out. I have sadly no credibility with my family, and if I once again state that even my dad might have celiac just as I did with my mum, they will definitely think that I associate everything with celiac.

By the way I am curious, since I also suffered from chronic constipation, what other symptoms did you experience beside the constipation? If you had cramps, what type? Do you have a rash, mood swings, depression and so on?

The reason some celiacs get constipated is that their damaged small intenstines don't process the food completely, which leads to the continuous absorbtion of the moisture in the food instead of the nutrients (since the food isn't comletely processed), until the food (then in stool form) has become extremely dry by the time it reaches the large intestines. That's why fibers alone don't help. You need water, and a lot of it + probiotics to help the intestines regulate and heal faster. The problem with chronic constipation is that it can cause the large intestines to get larger, and in turn not be able to feel when you need to go.. I think.. I'm not sure.. which is why you might be needing laxatives. I think that when I read about that I also read that they can go back to their original size after you've healed.

I was so reluctant and bummed about using probiotics in the beginning until everyone here convinced me to use them. They've done wonders!

I remember reading a post by others stating that they have not had reactions sometimes. Might be worth it search for their posts!

Hello everyone! Many of you might not remember me. I was very active on these forums about a year ago. I then decided that it was time to change the habbit of eating, sleeping and breathing celiac disease, because I was doing nothing else but reading and writing about it.

I am feeling much better now that I have been on the diet for over a year, and it's all thanks to the people here. I'm not sure if you are still around but thank you!

I have sadly lost my mother back in february, and I have reason to believe it's due to an undiagnosed celiac condition, but I can't be sure because they did not do a biopsy on her. I'm wondering if I'm right about this so I'm wondering if anyone else knows someone who passed with similar symptoms.

I would firstly like to say however that this is a painful subject for me, so I beg that everyone would  not use this topic as an example or evidence to proving that celiac disease takes lives if untreated just to feel better about being confirmed and right about taking it seriously.

In any case, my mother passed away quickly in her sleep. She had been complaining about nausia  for a long time. Her blood tests showed that her potassium levels have been way too high due to kidney failure, and the amounts of potassium had caused her heart to stop, they also concluded that she had a minor clot traveling through her body which landed in her brain. They never said which came first however, the clot or the heart attack. She used to be a heavy smoker, but was on her way to quitting for about a year prior to her passing. I don't know if it's the smoking, or the kidney failur, or if it's both. I'm wondering if anyone knows of celiacs who developed clots?

I forgot to mention that she was just over 60 years old

Hi-

I'm wondering if anyone here knows off-hand about the gluten status of Tassimo t-disks? I tried to contact Gevalia about their coffees but was told to call Tassimo. I did so and it was very clear that the woman not only spoke little English but also did not know what gluten was. After putting me on hold she returned to the phone to tell me that all of the t-disks were Gluten-free and that trace amounts were added to all of the disks. I told her that trace amounts could make a person with Celiac very sick and she told me that,

"Yes mam, they're all gluten-free. You can have all of them."

Me: "But you said they all had trace amounts of gluten?"

Her: "Yes, trace amounts are added to all of them."

Me: "Even the teas?"

Her: "Yes. Mam, they're all gluten-free."

Any body have better luck determining their status?

Thanks-

Tosha

ROTF! :-D I know this wasn't your intention but this was hilarious!

It's been a year since you posted this. Did you find an answer?

I am researching the discs myself now because I'm pondering getting a Tassimo :-) I'll update the thread again if I find anything.

My family did not take me seriously, until I told them the following:

For a food to be labeled gluten-free legally, it's gluten content must be less than 20ppm (parts per million). So a single breadcrumb of gluten in a loaf of bread will cause a reaction.

I actually want to make an informative illustration to help people visualize this.

Thank you Dani! A most informative article & a great thing to post!

Yw! ((((hug))))