Gluten Free Traveller

Would that be North, Central or South Americans??? LOL

Nice one! Generally but not limited to many people from the USA

I'm not sure it's free. They just pay for it in other ways like tons of taxes. And they suffer when they can't get to the specialist forever or at all.

It really all depends how important it is to you to get that official diagnosis. There are plenty of people who only had high IgA and every other celiac test was normal and they went gluten free and had huge improvement of symptoms. But the gluten free diet is complex and you have to do it right. You won't get better if you don't do it all the way and go completly gluten free.

In terms of your adrenal function, are they looking at Addison's for you? Which hormones were low? I have hypoaldosteronism, not Addisons. My cortisol isn't low, just aldosterone and rennin. I'm on Florinef.

Personal question, do you pee a lot? Have you ever done a 24 hour urine collection and did you pee way more than they expect? Usual output is 1 to 2 liters. The reason is that with low aldosterone you can have salt wasting where you kidneys dump your salt and then your water follows. That can cause heart palpitations and all sorts of other symptoms. I was hospitalized for 10 days due to this in early October.

Keep on them about the adrenal function. It's important.

Why do Americans always think British folk pay more taxes? US and British taxes are pretty much the same, it's just that each country spends them very differently. I'm Scottish but currently live in the States. I was diagnosed in the UK 2.5 yrs ago. Lots of blood tests, gp visits, gastro visits, scans, biopsy, all that jazz..all free.

She is in the UK. She spoke about the NHS. It takes longer to see specialists but at least it's free

Hi Katie!

I hope we can help you to feel better!

In reading your symptoms it sounds as though you could certainly be celiac. I suffered from many of these things myself before being diagnosed. The stomach pains, terrible bowel movements, extreme fatigue, weight loss and some of your other symptoms are text book of celiac disease. Whilst I'm sure many other things present the same symptoms celiac disease sounds like a prime candidate.

If your IGA levels are high this again suggests and autoimmune disorder such as celiac.

You say you have gone gluten free for 3 days and you feel better? Have you tried a gluten-free diet in the past or is this the first time? If you are celiac and you go 100% gluten-free it will take a while to get completely healed but you should start to feel better and better, often right away.

Have you ever had the celiac biopsy to check if your villi are damaged? This would normally be the next step but you would have to be eating gluten for results to come back positive as if no gluten is eaten no damage will be being done and it may show a false negative.

For me being dx as celiac and never eating gluten again made all my horrible symptoms go away....I hope for the same with you!

Hey Julie!

It's so great to hear that you are taking your boyfriend's disease seriously and that you care enough about him to come onto this forum. He is a lucky guy!

If he has been diagnosed with celiac disease then he can't consume any gluten at all but don't worry too much about making him sick as there are a couple of simple precautions to take

* Be careful that you don't eat anything with gluten before you kiss him. (or if you do them first wash out your mouth or brush your teeth)

* Anything you put in or near to your mouth could be a concern if you're going to kiss him so make sure you don't wear any lip gloss/lip stick containing gluten. If you aren't sure which brands are safe don't wear any before you visit him

* Any other non food things should be fine. Most regular toothpaste brands are gluten free so you shouldn't have to worry there and your shampoo won't affect him unless he plans to eat your hair

Have you tried eating more foods with iron in them?

I'm eating a huge spinach salad right now.

Have you started using any new skin or hair products recently? Many times, a sudden change can be as a result not of diet, but of the beauty regimen. I would recommend throwing away any gluten-containing conditioners, lotions, soaps, lip balms, makeups, etc. Major, major source of overlooked cross contamination.

I haven't started using anything new as far as I can remember. I'm not a big make-up wearing person and I've been using the same type of shampoo for a long time.

Hi Traveller. Brain fog is a big symptom for me and really hard to explain to other people, but I totally understand it. While it certainly could be something non-celiac related, my assumption is that it is not. Whenever it happens to me now, and especially if I am also really tired, it means I've been glutened somehow. I'm as careful as they get, but I can only assume some gluten sneaks in at times, whether thru cross contamination or some other innocuous way.

Interesting. Yes, it really is difficult to explain to others who don't experience it. How long does your brain fog usually last? For me it's currently been over a week but at certain times it's worse than others...not sure why. A lot of people have been suggesting that it could be that I'm not getting enough fatty acids like omega 3. I'm going to try to incorporate more salmon, etc and see if it makes a difference.

Hi everyone,

I know there have been posts on brain fog before but nothing too recently so I wanted to ask if anyone could help me..

I was diagnosed as celiac a little over 2 years ago and have been completely gluten free ever since. I am extremely careful about what I eat and have been feeling great since all my horrible symptoms left.

Recently however I've been getting really bad brain fog. It makes it difficult to concentrate and I feel as though I'm only half here. I feel spacey and out of it. I have no idea whats causing it. Could it be stress? Something I'm lacking from what I eat? I was at my doctor for a physical less than 4 weeks ago where they did lots of blood tests and everything came back normal except that I have low iron. I'm not anemic as my red blood count is fine but it was suggested I take multi vitamins which I do now.

Has anyone experienced something similar? Any tips on how to get rid of it would be greatly appreciated!

Thanks,

Laura

This is ridiculous. Your boyfriend's mother is clearly a horrible person. Personally I would just stay away from here for good. It sounds as though you've done to best to explain things to her and she doesn't care. The solution is obvious...don't visit her. Why would you ever want to be around someone so nasty who is trying to make you sick!

Hola! Que bueno! Chile is amazing!

I travelled there last year and stayed 100% gluten free. Where are you moving to? Awareness of celiac disease isn't too great but there are tonnes of naturally gluten-free things to be found there. If your Spanish is good then it will be much easier.

Grocery stores in larger cities like Santiago have gluten-free products but in smaller places like Valparaiso (which was my favourite place there) your best bet is shopping for naturally gluten-free things. Many of the products you do find labelled as gluten-free in Chile come from Argentina as gluten-free awareness/labelling is much better there.

Buen Viajo!

Yes, it's beautiful and the people are very friendly. In Slovenia we travelled to Ljubljana (which is one of my favourite cities in Europe),Bled, Postojna and some short stops in between. In Croatia, we drove down the coast and stayed in Zadar and a couple of other places along the coast. Beautiful.

Ok Ss's (Super Sensitives) tee hee

I need some cereal. I have always been a big cereal person. Do any of you do ok with Chex cereals? I emailed them and they dont make them on dedicated equipment but have strict guidelines etc. The Pebbles line is on dedicated equipment and I'm not sure about the gluten free rice krispies. Any thoughts on these?

I'm pretty much the biggest cereal fan ever! I'm from the UK but now living in the US.

Chex are meant to be safe for celiacs. I ate them for months, a huge bowl every morning and often more at night, and was fine but more recently I've been getting diarrhea after eating them. I've stopped for a while and I'm back to Envirokids cereals...yummy! Peanut Butter panda puffs and gorilla much are my favourite right now and they go perfectly with Nature's Path Corn Flakes. Nature's Path have lots of other good gluten-free cereals too.

I've heard from a few friends that the gluten-free rice krispies have made them sick but haven't tried them personally.

The anxiety does not stop me from traveling - we own a lovely house in Croatia and Croatia is where my heart is. However, as I posted on another thread, we had to postpone our trip (we were to be leaving this past weekend) due to my being ill and in a lot of pain. Severe chronic pain and travel causes me far more anxiety than celiac does because I cannot escape it. Once I arrive I am fine as I do a lot of research for each country we go to well in advance. I am a planner!

That's great to hear it doesn't stop you from travelling. I know it certainly does for some celiacs which is why I started my website when I was diagnosed to encourage people that it can be done.

oooh, Croatia is so beautiful. Where abouts in the country is your house? Sorry to hear that your chronic pain isn't allowing you to get there at this time. My husband and I spent 10 days driving around Slovenia and Croatia a few years back. A beautiful part of the world and definitely somewhere I want to go back to. What's it like finding gluten free food in Croatia?? I was there in pre-celiac days.

Yeah, raw foods (or any meat, dairy etc) are definite no nos to australia and New Zealand. Along with a bunch of other products too. Declare everything! That arrivals card is taken very seriously and you don't get into trouble if you ask questions and are open about what you have, but there are big fines otherwise. Being island nations we can keep a really strict control on things like this.

Interesting..I didn't realise Oz and New Zealand were tough on brining produce in. Chile is very much like that too! They have huge signs when you go through customs of fruit with big crosses through it!

Interesting. Thanks for the feedback guys. I'm always fascinated to hear the thoughts of fellow gluten free travellers.

So it sounds as though the actual process of getting to your location brings a lot of anxiety. Do these anxieties stop you from travelling?

How about once you make it to your destination? What anxieties/concerns do you have once you arrive in New York, Paris or Rio for example?

Travelling can be challenging when you're celiac. A vacation or a business trip isn't as simple as it was before.

Personally what I find most difficult is trying to communicate with a chef/server in a different language...if we barely know what each other is saying then it's quite the challenge trying to work out whether or not they understand what celiac disease is and what I mean by cross contamination.

What concerns you most/makes you most anxious about travelling gluten free / as a celiac?

So I was wondering, for those that have been super gluten-free for a long time has it helped? How often do you get glutened? I would love to read some other success stories!

I was diagnosed as celiac in August 2009. For the first couple of months I messed up a few times because I wasn't completely used to the diet yet but I'd say I've been 'super gluten free' as you put it since for almost 2 years now.

I feel 100% better..all the horrible symptoms I had disappeared..and now I very rarely get glutenated. I may have felt a little off and had a couple of symptoms return a few times over these past 2 years but I can certainly say that I have never had a day when I felt like I did before I was diagnosed and started my gluten free life.

I would never have thought that the bar didn't clean their classes or I would of course not go there. I guess mistakes are made everywhere though. When I started to feel glutenated though itw as the only thing I could think of..

Don't worry, it's not bad at all. I was really freaked out before mine but it was over before I knew it.

In which country are you? You will get the option of getting it done with or without sedation..Take it!! I have friends who said no to sedation and reported it wasn't very pleasant. I did and the last thing I remember was going into theatre and being asked to lie on my side. A (very cute) doctor then put a small needle into my hand to give me sedation and then I was out..

The next thing I remember was when I woke up in the recovery area of the hospital and my dad was beside me. I was pretty drosey as apparently I kept repeating myself and telling him it looked as though he had 4 eyes but other than that it was fine.

You will be fine and it will be done before you know it! I hope you get the results you're looking for!

Laura

Yeah, you definitely don't need to be terrified of the biopsy. you will be fine. Just make sure you take sedation because that way you won't remember anything about it. I went into the operating theatre, was given sedation (by a very cute doctor) and then the next thing I remember was waking up with my dad next to me.

Do you feel better when you don't eat gluten?

Sometimes the blood test can come back negative but then when you get a biopsy it shows damage to your gut which would happen if you did have celiac disease. Are you planning to get the biopsy? It's the only for sure way to be diagnosed as celiac. You would however need to still be eating gluten for 3 months leading up to the biopsy to ensure correct results.

I took Excedrin last night for a headache. It helped my headache..felt fine

I was going to say it could be the aspartame too. The diet pepsi itself is gluten free so it must be something else within in that's bugging your stomach.

If you are gluten intolerant rather than celiac and you eat gluten you are likely to have many of the same horrible symptoms such as diarrhea, bloating etc but you won't have to deal with the long term consequences of eating gluten such as infertility, osteoporosis, bowel cancer etc.

I feel the main difference when it comes to every day life is that whilst you will stay have to stay away from gluten in order to feel healthy you will not have to worry about cross contamination issues the way a celiac does. A little gluten isn't going to do long term damage the way it would to me but you would still want to eat mostly gluten free to avoid feeling bad.

Hope this helps a little,

Laura