My Coming Out

[ArtistinChina]

Hello all,

I hope I will make some friends here because I feel so lonely...Lucky enough I have found this forum.

I have ALL the symptoms of coeliac (Open Original Shared Link) since ever. Only I have always blame other cirmonstances for what was, now I know at 99%, coeliac. Last summer I was under a great stress and I got so sick. All my symptoms where boosted from at least 50% so it became unbearable: dizziness, diarrhea, extreme fatigue, feeling of being hung over, stomach aches, belly cramps, bloatness, burps...and lots of skin rashes and other type of unidentified skin erruptions, weird tongue texture... I know since about 5 years that I am dairy intolerant, but here, I could not explain what was going so wrong because I was avoiding any type of dairy since then. So one of my friend who's nutritionnis told me about coeliac disease, saying ' you know maybe you are coeliac'? What's that thing and I thougt: 'yeah yeah, not for me'. Then one week later, another friend who is doctor and who has recently discovered the source of her many years of sickness--coeliac-- told me : 'it seems like you are gluten intolerant, have you ever checked that'? Of course no, I did not even know this was existing a week ago!

Then, this was back in July, I have started to avoid ANY source of wheat. But it seemed like it was not enough. So I also added to avoided soy and corn, under the recommendation of my friends. Since them, I feel like I must hold myself very tight through that diet: no more restaurants, no dinner at friend's (of course I cheat and pay the price for it). I have discovered that as soon as I 'cheat' a little bit, I get diarrhea, skin erruptions, fatigue (that hung over feeling I hate it) and dizziness. It is horrible. I am sorry, this is my coming out, did I say it? I must vent about this somewhere because somehow, I feel when I talk about it to people that I am judged for making things up...I don't want to make myself interesting with any type of disease?? In fact, I hate that I have to deal with this now.

I saw my doctor a month ago. He told me we could go for a biopsy but really, do I want to do this? Is it true that you have to charge your body with wheat for 3 months prior to a biopsy? 'Cause just like most of people, I have no time to be sick!! What should I do? I feel lost and overwhelmed by all these recipies I know must cook for myself and oh guess what? I live in China so it is really tricky to find gluten free products here, and forget about reading the labels (any online shop I can order from?). In fact, to be honnest, I am desesperate. I said I want to make some friends here because I trust I can find some compassion, advices and tips to climb back up the hill and reach a level of acceptance. I hope it won't take too long. How long did it take for you guys to be in the acceptance zone?

Thanks in advance to whomever read and reply this post.

Cheers!

[ravenwoodglass]

Welcome to the board. It is true that to get tested you do need to go back on gluten for about 3 months and you could still have a false negative.

If that is not an option for you then you can simply go gluten free strictly. Yes it is restrictive especially at first. It is easiest to go with whole unprocessed foods. There is a link at the top of the page to the Gluten Free Mall and there are other places where stuff can be ordered also. If you post the items you are most interested in replacing with gluten free stuff in the products section you can get some opinions from others on stuff they like the most. It might also be helpful to post in the International section to see if there are some folks here from China that can give you a heads up on products available there.

[eatmeat4good]

Welcome and yes we can empathize with your situation as there are many of us here who can't handle gluten-- Or the thought of eating it for 3 months to get tested.

It sounds like you have gotten a handle on the basics and you are educating yourself. Read, read, read, here in order to be sure of avoiding trace gluten.

Rice should be OK but as for reading labels you are sunk. Unless you can translate them. But then, who knows if there are regulations in China about adding wheat to products without labeling them?

I don't know if they ship internationally, I guess they would, but check out

NutsOnline.com. They have a large gluten free section and they test for gluten. Nuts, flours and mixes are avaiable.

It is really frustrating when you begin to learn that you are sensitive to traces of gluten. But when you also realize that avoiding it will make you well it is empowering.

It took me a while to get to acceptance. I was very sad about all the years I was so damn sick...all because of wheat. It depends on how long you were sick and whether or not you have support for your process of accepting the disease. But you aren't attention seeking and your friends won't think that. You want to be healthy and you need to be able to talk about the difficulties and triumphs you have.

I found this site and I use it for education, emotional support, and venting. Oh! And I forgot! For learning gluten free cooking too! I think it is a wonderful place and it will be a great resource to you.

Try to eat mostly whole foods...the ones you can recognize that are totally gluten free which should be all fruits and vegetables and meat and rice. But yes, spices are dangerous especially spice mixes from other countries, mostly becasue of the unknowns.

Try to find out if there is anyone else who has to be gluten free or has experience eating gluten free in China. The good thing is they make a lot of things with rice flour...and you can too!

Best of luck. Welcome to the Board.

[ArtistinChina]

Thanks you ravenwoodgrass and eatmeat4good. It feels comforting to read your answer. I am determined to find a new balance with my diet, altough these days I cry often because I feel overwhelmed with this. Also, I am sick at the moment, my tummy can't stop hurting from some soy product I have had on Monday (I did not now) plus I have nausea and head ache. What a waste of time!

To ravenwoodgrass, I was impressed by your bio copied at the bottom of your message. How can it be that you test negative while you are positive? I have heard you can go through a blood test and after a biopsy. I kind of feel uncomfortable to tell people I am coeliac, because I did not have a diagnostic. Should I rather say I am gluten free? Then people assume I can have soy and corn. But according to my personnal tests I can't. It's hard for me to accept the disease as you can tell...

And, is it true that you can get rid of that disease eventually and go back to a 'normal' diet? A friend of mine has irritable bowel. She says she has healed herself with some nutritherapy and she can now eat back again some of everything. Have you guys ever heard of that?

[ravenwoodglass]

Thanks you ravenwoodgrass and eatmeat4good. It feels comforting to read your answer. I am determined to find a new balance with my diet, altough these days I cry often because I feel overwhelmed with this. Also, I am sick at the moment, my tummy can't stop hurting from some soy product I have had on Monday (I did not now) plus I have nausea and head ache. What a waste of time!

To ravenwoodgrass, I was impressed by your bio copied at the bottom of your message. How can it be that you test negative while you are positive? I have heard you can go through a blood test and after a biopsy. I kind of feel uncomfortable to tell people I am coeliac, because I did not have a diagnostic. Should I rather say I am gluten free? Then people assume I can have soy and corn. But according to my personnal tests I can't. It's hard for me to accept the disease as you can tell...

And, is it true that you can get rid of that disease eventually and go back to a 'normal' diet? A friend of mine has irritable bowel. She says she has healed herself with some nutritherapy and she can now eat back again some of everything. Have you guys ever heard of that?

If you are celiac or gluten intolerant you can never go back to eating gluten. Once your body has started to make antibodies to gluten it will make them again if you start to eat it again although it can take a while for the symptoms to again become obvious.

There are quite a few folks, up to 20% that show a false negative on blood tests and/or biopsies. I am one of them. There are many reasons for false negatives but unfortunately they happen. My symptoms screamed celiac and I was tested over and over and showed negative on the blood tests so doctors wouldn't do an endo. After a wise doctor finally put me on an elimination diet it was confirmed that gluten was poison to my system and I was referred back to my GI who demanded another challenge with disasterous results and I was diagnosed. My family was sceptical at first as I certainly had plenty of other diagnoses but within a few months my recovery was astounding as slowly all my other autoimmune issues resolved.

[New Community Member]

Well, it sounds like you feel better when you don't eat gluten. Is the official diagnosis necessary? Although, it would give a peace of mind to have something confirmed. Chinese dishes do contain a lot of soy sauce most of the time and the soy sauce contains gluten most of the time. In America there's gluten-free soy sauce, but obviously that's not accessible to you. I used to live in Asia and it would be one of the worst things to find out that I couldn't have the authentic Asia food that I like so much!! (Fortunately, I didn't have celiac then). So, I did a google search and found one site that might be helpful it's Open Original Shared Link It talks about a stores/restaurants in China that are gluten free. It might be worth checking out. gluten-free food is hard to come by and expensive even in America. I can't imagine what it would be in China, but it's for your own health. If I were you, I would go take a trip to the nearest gluten free store and stock up on food. (and of course, make time for sightseeing!). Good luck!