Newly Diagnosed Resident Of Moscow

[Moscow]

I am 40, an American living in Russia and out of the blue am diagnosed with this Celiac thing. They scoped me in New York about 5 weeks ago and I'm on a wheat free diet which isn't fun for me and particularly the family. This is new to me so I have a few questions and there are not many English speaking docs here who have a lot of knowledge. I went in feeling a little 'off', lightheaded and tired and it turned out I had really low iron. Like 7 whatevers. So off I go to NYC, get scoped etc and 5 weeks later I am still tired but more importantly vaguely off and ever so slightly mentally confused which can be tricky as I teach for a living. Is that normal? All the sites seem to say, everyone got better the second they took wheat out of their lives! Here I am and I'm taking iron and not eating wheat but I still don't feel 100% normal. How long does it take? Is there anyone else like this? Does this mean I need to panic or what? Could the Doc have misdiagnosed me. (Unlikely I imagine) A few other areas of confusion - is a gin and tonic OK? Does anyone know if I can get Glutin-free beer in Moscow? Will I ever be able to take my family out for a meal again? Any advice especially on recovery would be most welcome.

Dazed and confused.

[lovegrov]

Mental confusion and and fatigue are common symptoms of celiac. And most people do NOT clear immediately. I missed 10 weeks of work and didn't feel completely "normal" for about 10 months.

People with celiac have to avoid not just wheat, but also barley, rye, and, usually, oats. A gin and tonic should be fine but I can't tell you about gluten-free beer in the USSR. We just recenlty got it in the U.S. As for eating out, it's best to avoid that for a while if you can. But, yes, you'll be able to eat out again. Best bet is a place with a real chef who knows what's going into the food.

richard

[Nantzie]

Hi Moscow -

Welcome to the board! The dazed and confused feeling is what we refer to as "brain fog". It can take a while to feel better. Part of it is just the healing process and part of it is gettin used to the diet and avoiding the hidden gluten; gluten appearing where you wouldn't expect.

It does take a while to get everything figured out. The faster you can get to 100% gluten-free, the faster you will start to feel better. That being said, there's only so much you can learn in a day, so it does take some time.

This board is the best resource you could find. I've learned everything I know about eating gluten free right here.

Nancy

[Moscow]

Mental confusion and and fatigue are common symptoms of celiac. And most people do NOT clear immediately. I missed 10 weeks of work and didn't feel completely "normal" for about 10 months.

People with celiac have to avoid not just wheat, but also barley, rye, and, usually, oats. A gin and tonic should be fine but I can't tell you about gluten-free beer in the USSR. We just recenlty got it in the U.S. As for eating out, it's best to avoid that for a while if you can. But, yes, you'll be able to eat out again. Best bet is a place with a real chef who knows what's going into the food.

richard

Well that is somewhat of a relief to hear someone say that. It got so as I started to think that I was going to feel this way forever, and I can't get a straight answer out of a doctor. So it's not that I'm still glutening myself mysteriously - there's barely anything I can eat at work so I stick to the salads but I put cheese and oil and balsamic vinegar on it as well as some sort of ham. Good grief - ham is OK isn't it? I was about to open some Danish tinned ham tonight, looked at the label and saw gelatine. What's gelatine when it's at home? Now for a Gin and tonic...although the tonis is Russian so who can tell.

[Moscow]

Hi Moscow -

Welcome to the board! The dazed and confused feeling is what we refer to as "brain fog". It can take a while to feel better. Part of it is just the healing process and part of it is gettin used to the diet and avoiding the hidden gluten; gluten appearing where you wouldn't expect.

It does take a while to get everything figured out. The faster you can get to 100% gluten-free, the faster you will start to feel better. That being said, there's only so much you can learn in a day, so it does take some time.

This board is the best resource you could find. I've learned everything I know about eating gluten free right here.

Nancy

Thanks for the reply - it does make me feel a little less....doing it all alone. So this brain fog happens to other people? For 5 weeks? Would there be days when i feel clearer than others? When I was first diagnosed and I stopped eating wheat I immediately felt better, but then I went back to the way it was before....but I'm pretty sure I've been wheat free. Is it an up and down thing? Some days you're feeling better and some days you don't? Ask for a glutin-free menu in Moscow. People think I'm making it up! Nancy - what about oats. There are these oatcakes that say guaranteed wheat free...but oats? Buckwheat? Something we have a lot of in Russia, but is it OK? Feta cheese? Any ideas? What about medicines? I'm constantly e-mailing companies but most of the time I don't get anything back. Sorry guys for all the questions but I've been driving people up the wall over here and this is the first time in weeks that I'm getting some answers.

[gfp]

Thanks for the reply - it does make me feel a little less....doing it all alone. So this brain fog happens to other people? For 5 weeks? Would there be days when i feel clearer than others? When I was first diagnosed and I stopped eating wheat I immediately felt better, but then I went back to the way it was before....but I'm pretty sure I've been wheat free. Is it an up and down thing? Some days you're feeling better and some days you don't? Ask for a glutin-free menu in Moscow. People think I'm making it up! Nancy - what about oats. There are these oatcakes that say guaranteed wheat free...but oats? Buckwheat? Something we have a lot of in Russia, but is it OK? Feta cheese? Any ideas? What about medicines? I'm constantly e-mailing companies but most of the time I don't get anything back. Sorry guys for all the questions but I've been driving people up the wall over here and this is the first time in weeks that I'm getting some answers.

Chance is any ham imported from the EU will contain wheat derived glucose, dextrines or other agents used to make it "slice easily"...

Gelatin is what is left when you boil skin, cartilidge or bones and let it cool

Buckwheat is fine... its no relation to wheat....

I have a celiac friend who visits Moscow regularly...

If you are really desperate I can also get some small stuff taken over for you... I have lots of ex-colleages in Moscow and they are in Paris reasonably frequently.

Can I suggest you search the forum for cross contamination (usually just abbreviated to CC) and hidden gluten.

пшеница is wheat

рожь is rye

ячмень is barley

but you need to also look out for

крахмал starch etc. or just plain мука (flour)

erm sorry but I don't have a cyrillic keyboard so typing this out is a pain ...

[Nantzie]

Thanks for the reply - it does make me feel a little less....doing it all alone. So this brain fog happens to other people? For 5 weeks? Would there be days when i feel clearer than others? When I was first diagnosed and I stopped eating wheat I immediately felt better, but then I went back to the way it was before....but I'm pretty sure I've been wheat free. Is it an up and down thing? Some days you're feeling better and some days you don't? Ask for a glutin-free menu in Moscow. People think I'm making it up! Nancy - what about oats. There are these oatcakes that say guaranteed wheat free...but oats? Buckwheat? Something we have a lot of in Russia, but is it OK? Feta cheese? Any ideas? What about medicines? I'm constantly e-mailing companies but most of the time I don't get anything back. Sorry guys for all the questions but I've been driving people up the wall over here and this is the first time in weeks that I'm getting some answers.

GFP gave great answers, as usual. He's one of our many resident experts here.

Feeling better can be an up and down thing. You also may be starting to be more sensitive to it. Are you guarding against cross-contamination? If you live in the same house as other people who eat gluten, you may be getting some cross contamination.

A lot of the people in restaurants here think you're making it up too. Same with family, friends, coworkers, etc. It's slowly starting to get more known, but for the most part you get either eye-rolling or a blank stare.

Oats themselves are gluten-free. BUT, the oats in the US are almost all contaminated with gluten because they process them on the same equipment as the gluten-containing grains. There are a couple of small companies in the US now that make gluten-free oats. There are also some people with celiac who also react to oats since the protein avenin is similar to gluten. Oftentimes people are advised to avoid oats for the first year, and then reintroduce them slowly to see if you react.

I'm not sure about feta, or the balsamic vinegar you mentioned. I don't use it so never checked on it. I do know that malt vinegar has gluten. Maybe someone else will be able to verify those for you.

Medicines have to be verified. Gluten is sometimes used as a binder or filler. If any are brands that we would have in the US, we might be able to help with that.

Don't worry about asking questions. That's how everyone here started out. It won't be long until you're answering questions from new people too.

Nancy

[gfp]

I'm not sure about feta, or the balsamic vinegar you mentioned. I don't use it so never checked on it. I do know that malt vinegar has gluten. Maybe someone else will be able to verify those for you.

Feta should be OK so long as its not low-fat etc. Basalmic vinegar is OK if its REAL de modena BUT many "basalmic" type vinegars also have coloring and this can contain gluten.

I emailed my celaic friend who visits Moscow frequently, her husband is a Muscovite ... I linked to this thread so hopefully when she has a minute she may be able to help with specifics and stores etc.

Either way you made me pick up my Russian dictionary and brush off the dust... LOL, I certainly needed a bit of practice.

[Moscow]

Feta should be OK so long as its not low-fat etc. Basalmic vinegar is OK if its REAL de modena BUT many "basalmic" type vinegars also have coloring and this can contain gluten.

I emailed my celaic friend who visits Moscow frequently, her husband is a Muscovite ... I linked to this thread so hopefully when she has a minute she may be able to help with specifics and stores etc.

Either way you made me pick up my Russian dictionary and brush off the dust... LOL, I certainly needed a bit of practice.

Thanks gfp - its not many a household that has a Russian dictionary sitting around. The problem here is that many things are simply not labelled at all. Some things say natural flavourings which i've learned to avoid. Anything your Russian acquaintance can tell me about places to shop and eat in moscow would be great - then again in August I'm moving the family to Uzbekistan - don't imagine they'll have gluten-free beer either. Again, many thanks for the advice - you prompted a mad rush to the kitchen to see if the vinegar was safe or not...it was. But maybe the stuff at school is not. That would explain the lack of improvement. If I get a few crumbs out of the toaster my family use on my gluten-free bread, does that really cause a lot of damage?

[Guest AutumnE]

Im obviously not gfp but from what I have read yes that can make a difference in healing. I would either recommend a new toaster for you separately or use these ( I havent tried them yet myself)

Open Original Shared Link

Also, your microwave could be a source of cross contamination. I have found it easiest to have my whole family be on a gluten free diet.

[gfp]

Im obviously not gfp

hmm you might be my alter ego

but from what I have read yes that can make a difference in healing. I would either recommend a new toaster for you separately or use these ( I havent tried them yet myself)

Open Original Shared Link

Also, your microwave could be a source of cross contamination. I have found it easiest to have my whole family be on a gluten free diet.

But you said exactly what I would have said anyway....

Moscow, you should probably look up cross contamination (CC) ... I would say IMHO sharing a toaster on a regular basis you might as well not be gluten-free... sorry but the more I learn the more paranoid I get...

Uzbekistan ... wow, you really are one for adventure...

its not many a household that has a Russian dictionary sitting around.

I had to learn Russian for work... which brings me to something you are not going to like... sorry....

One of the major reasons I quit my job was because of my celiac disease. I was forever being glutened on business trips ... Its hard enough if the business trip is to Western Europe but I found the FSU and Africa nigh impossible ....

I had to eventually make a descision about my health and reluctantly decided the oil patch was not ever going to be safe...

I tried a few times getting desk jobs but unfortunately once you have experience in certain areas your forever a prime candidate for getting sent back....

I actually managed to miss all my language maintainance courses (oops) since these are also a factor in getting sent places LOL "Oh you speak the language can you go to XXX tomorrow" (can being a euphenism for would you still like a career tomorrow or not)

I also got a little tired of getting shot at or playing with landmines or having colleages kidnapped.... as I say good luck in Uzbekistan... still its probably safer than Dagestan.

ooops forgot:

For beer I would try and get a friend with contacts at the german embassay.... many of the smaller german breweries are doing gluten-free beers and it might be easier to source some through one of them...