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sandworm

Is Self Diagnosis Enough?

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Hi everyone,

This is my first post in this forum. I am an American living in Taiwan. Without going into a discourse disparaging the medical system of Taiwan, I'll boil it down to say that I have been to many doctors and have not received a diagnosis for my constant stomach problems.

Basically, I have suffered from stomach disorders for many years (as long as I can remember.) I'm a frequent dumper, and have gnawing pain in my stomach when I'm hungry, and cramps after I eat. The mornings are generally horrible, as I wake up with painful gas and diarrhea that lasts well into the day.

Symptoms aside, as I mentioned, I've been to many doctors, and I have heard nothing even remotely conclusive (even such gems as "you're drinking too much cold water.") Finally, with no other recourse, I have decided to simply self-diagnose.

I started with the fit-for-life diet, basically separating protein and carbs. As far as i can tell, this did nothing but make me hungrier and more uncomfortable.

Second on the list was going wheat-free (not necessarily gluten-free, but I'll get to that in a moment.) I've now done this for almost two weeks. I *think* I'm feeling better, the mornings are definitely less painful, though I still have massive gas and dump 4-8 times per day.

Last Friday I ate a hamburger bun (yes, with a hamburger), just as a test. I woke up in the night feeling horrible, and in the morning I had almost debilitating pain. I'm not sure if this was from a reintroduction of wheat-products (or gluten), but it was certainly an eye opener.

I've resumed my wheat-free diet, and consider it mostly conclusive. I still don't feel 100% though, my question is: could that be because of not completely eradicating gluten from my diet? It's not easy here in Taiwan... Also, could last friday have been a fluke? Any advice would be much appreciated.

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As you can tell by reading in this forum, many of us are self-diagnosed. Many of us do give up on doctors finding the cause of our problems. Too many false negatives.

As for going gluten free, yes, you have got to go totally gluten free for a true test. You can't just give up wheat. Wheat, rye, and barley and you must watch for it in everything you eat, also in other products, such as soaps, shampoos, lotions and such. It's seems overwhelming in the beginning, but once you figure it all out, it does get easier.

Good luck.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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You probably already know this, but there is wheat in most soy sauces--and if you are in Taiwan, likely you are eating mostly Chinese food, right?

If you eat

out a lot, you can ask for no soy sauce in your food. It will still taste good--they will use garlic, ginger, and wine, which is a white sauce (a Chinese white sauce, not to be confused with a French or American white sauce, which has flour).

Hope you feel better soon!

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Thanks everyone,

One question I have is: last night was Thanksgiving, and I only ate potatoes, turkey and corn, with no seasoning other than salt and pepper. Sadly, I felt awful this morning. Could that simply be residual from previous things I've eaten? I thought I had a pretty gluten-free last couple of days.

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Thanks everyone,

One question I have is: last night was Thanksgiving, and I only ate potatoes, turkey and corn, with no seasoning other than salt and pepper. Sadly, I felt awful this morning. Could that simply be residual from previous things I've eaten? I thought I had a pretty gluten-free last couple of days.

Was the turkey stuffed with breading and then basted? Was it a pre-basted turkey? Cross contamination can be just as bad as eating several sandwiches.

Corn can also be pretty tough on an injured digestive system. I wouldn't rule that completely out either.

And yes, your "reaction" could also be from something you ate 3 days ago. Food intolerances can occur up to 3 days later. Gluten mishaps can take weeks to get better from depending on how sensitive you are. In a celiac, eating 1/8th of a wheat thin cracker causes enough damage that it takes 4-6 weeks to heal. You may want to keep a food journal and backtrack on this one a bit to see if you can find the true source of your discomfort.

As for self-diagnosis, I'd definitely say that that is as good as a "formal" one. Chances are, self-diagnosing ends up bringing you to better health on a much faster track (for many.....YEARS ahead). And ultimately, the end game is the same...a gluten-free diet.


Vicky

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I don't think you feel good until you've been totally gluten free for awhile (and it take time to work out all the kinks).

Your gut has to heal. You can imagine how messed up it is with the symptoms you've described. Also the villi that has been damaged is what you need to fully get the nutrition you need from the food you eat.

Many if not all develop a leaky gut. I don't have the time to explain all what that means except to say it causes food intolerances or allergies. For instance a common intorerance is corn because it's in so many foods. I believe it's because high fructose corn syrup is in everything. So along the way of getting gluten out of your diet you'll have to see if something else is giving you problems and eliminate it for awhile and see if you improve.

Dairy is another big one and so is soy. Most celiac loose the enzymes needed to digest lactose. This is sometimes only temporary.

Nothing wrong with self diagnosis, but if your uncomfortable with it get your testings done now before you go to long with the gluten free diet. I'm probably to late with that advice, but they'll need you to go back to eating gluten for about 6 weeks. Something I choose not to do.

Gail


Gluten Free since Jan. 06

Gluten intolerant. DQ 0301 DQ 0602

Lactose intolerant.

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Thanks for your support, all,

I still am feeling under the weather, but wow it's rough to try to be gluten free in Taiwan. Everything is cooked with soy sauce, and they never wash the pans, so you'd never know about cross contamination. On top of that, the labeling requirement isn't particularly strict, so it's really hard to know what's safe. Is there a way to tell if certain rice is glutenous? I know there is "glutenous rice," and that it's used often in Taiwanese food.

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Thanks for your support, all,

I still am feeling under the weather, but wow it's rough to try to be gluten free in Taiwan. Everything is cooked with soy sauce, and they never wash the pans, so you'd never know about cross contamination. On top of that, the labeling requirement isn't particularly strict, so it's really hard to know what's safe. Is there a way to tell if certain rice is glutenous? I know there is "glutenous rice," and that it's used often in Taiwanese food.

Just a quick note here...glutenous rice is gluten free. It is called that because it sticks together, but free from gluten.

Try to stick the the naked diet..meats, fish, veggies, rice, potatoes, fresh fruit. Limit you seasonings to salt and pepper. Eat as naturally as possible. It will help your healing process.

Be cautious of shared toasters, wooden spoons, scratched pots and pans, etc. from pre-gluten free cooking.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Just a quick note here...glutenous rice is gluten free. It is called that because it sticks together, but free from gluten.

Try to stick the the naked diet..meats, fish, veggies, rice, potatoes, fresh fruit. Limit you seasonings to salt and pepper. Eat as naturally as possible. It will help your healing process.

Be cautious of shared toasters, wooden spoons, scratched pots and pans, etc. from pre-gluten free cooking.

Excellent, thanks for the advice! It's going to be really hard to eat the "naked diet" without cross contamination, everything in Taiwan is done in cheap streetside stalls that have like one pan they've been using since the last dynasty.

Here's a question, how long could it possibly be before I see some positive benefit that could make me feel a little more sure that I'm on the right track? After a couple weeks now of being gluten-light, I feel sick almost immediately after eating certain foods. Am I right in thinking this is a good sign? (though mightily uncomfortable.)

Again, thanks so much for your help everyone, it's really appreciated.

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Excellent, thanks for the advice! It's going to be really hard to eat the "naked diet" without cross contamination, everything in Taiwan is done in cheap streetside stalls that have like one pan they've been using since the last dynasty.

Here's a question, how long could it possibly be before I see some positive benefit that could make me feel a little more sure that I'm on the right track? After a couple weeks now of being gluten-light, I feel sick almost immediately after eating certain foods. Am I right in thinking this is a good sign? (though mightily uncomfortable.)

Again, thanks so much for your help everyone, it's really appreciated.

What you are doing is dietary challenge, which is considered a valid form of diagnosis. You need to consider being gluten free not gluten light. Gluten light may make some problems a bit less severe now but is not stopping the antibody reaction. This may prevent you from seeing any real positive benefit until you stop eating it totally. For us gluten light is not enough we need to be gluten free for healing to take place. Are there any grocery stores or farmers markets there? I am thinking there has to be. If so go with fruits and veggies, nuts,plain rice and other stuff you know is safe. Also there are dining cards available that will help you find gluten free food in countries where you are not fluent in the language, perhaps those might be helpful.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I read on a forum that someone talked to a cook htat was chinese and he explained that flour there is usually a mix of anything, and there is often more or less wheat flour in it. They do not distinquish so much between different flours in everyday life. They buy flour and it is often just a mix....so it can be hard to live gluten-free when eating out.

There might be some people from the far east in another folder here in the international forum that can answer better on how to cope.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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