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New Here! A Bit About Myself And Need Some Pre Testing Advice. Thanks!

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Hi everyone! This is my first post and I

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1) GI docs can go either way... They can be very knowledgeable or not. It's kind of a roll of the dice. Also, they tend to look at test results as the defining criteria. The problem with this is that if you are not in an advanced disease state your blood work and/or biopsy may come back negative. Do the testing, but prepare yourself for negative results.

2) there are no set criteria or tests for gluten intolerance (outside celiac). So if your test results come back negative, you can still see if gluten is a problem for you by doing a trial gluten free diet for 3 months or so. If it improves your symptoms, and if they return when you begin eating gluten foods again, you have your answer. You need to be gluten free.

Side note: if you elect to be tested, remain on a regular diet containing gluten until after testing. Going gluten free before the tests can skew the results negatively. And, if you do a gluten free diet trial and THEN decide to get tested you'll have to go back on gluten for about 3 months to increase your chances of getting accurate results. Doing this sucks if you are gluten sensitive because most of the folks here will tell you that going off gluten will sensitize your system to it (if you are intolerant) which means when you go back on for testing, your symptoms could be much worse during those 3+ months.

YOU are the best expert when it comes to YOUR BODY. Trust your gut.

P.S. If you don't already know how, learn to cook. Being able to prepare food from scratch opens the door to a varied, enjoyable, HEALTHY gluten free life. Over-reliance on processed foods can make the diet much more expensive, much harder to follow (limited options), and much less healthy.

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1) GI docs can go either way... They can be very knowledgeable or not. It's kind of a roll of the dice. Also, they tend to look at test results as the defining criteria. The problem with this is that if you are not in an advanced disease state your blood work and/or biopsy may come back negative. Do the testing, but prepare yourself for negative results.

2) there are no set criteria or tests for gluten intolerance (outside celiac). So if your test results come back negative, you can still see if gluten is a problem for you by doing a trial gluten free diet for 3 months or so. If it improves your symptoms, and if they return when you begin eating gluten foods again, you have your answer. You need to be gluten free.

Side note: if you elect to be tested, remain on a regular diet containing gluten until after testing. Going gluten free before the tests can skew the results negatively. And, if you do a gluten free diet trial and THEN decide to get tested you'll have to go back on gluten for about 3 months to increase your chances of getting accurate results. Doing this sucks if you are gluten sensitive because most of the folks here will tell you that going off gluten will sensitize your system to it (if you are intolerant) which means when you go back on for testing, your symptoms could be much worse during those 3+ months.

YOU are the best expert when it comes to YOUR BODY. Trust your gut.

P.S. If you don't already know how, learn to cook. Being able to prepare food from scratch opens the door to a varied, enjoyable, HEALTHY gluten free life. Over-reliance on processed foods can make the diet much more expensive, much harder to follow (limited options), and much less healthy.

Thanks for the response Lilu! I was actually planning on going on the diet anyway. Some medical affirmation would be nice although not expected. Which leads me to my next question. Is there a point testing through an independent lab like Enterolab if I'm going to go on the diet anyway? Would there be any real benefit to knowing? Also... how consistent are my symptoms with a gluten intolerance? Thanks!

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Here are the symptoms I experience. I

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So sorry it took me a bit to respond.

As to your first question - is there a point to testing if you are going to try the diet anyway... That's really something you have to weigh and decide for yourself. For some, "knowing" is very important. For others, feeling better is all that matters; we who suffer from these ailments have frequently not had the best luck with the medical establishment, and many of us, tired of looking for answers, decide to just take action. Only you can know what your personal priorities and values are, and I encourage you to let them be your guide re: Testing.

Some things you should know about Enterolab:

+ cutting edge work

+ more comprehensive testing, may catch disease earlier, as well as gluten intolerance

(-) Dr. Fine's work (upon which his testing model is based) have not yet been published, and as a result, results from his lab are often not accepted in the mainstream medical community.

See above for comments re: symptoms.

We are all here for you! Keep us posted!

Thanks for your response once again Lilu.

Any input from Lilu and other members would be appreciated. Thanks!

So I went to the GI doctor and he seemed like he did not even have a hunch as to what the problem is. He says its probably an ulcer. I asked him if he thinks my symptoms may be a result of gluten intolerance and he says he doesnt think so. He doesn't think a gluten intolerance will cause my symptoms to be so severe. He scheduled me for an endoscopy on Wednesday, but I don't know if he will perform a biopsy to look for Celiac. Should I insist on the Celiac route? I don't even know if I want to do the endoscopy anymore but suppose I should to rule out any serious problems. What do you guys think?

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Thanks for your response once again Lilu.

Any input from Lilu and other members would be appreciated. Thanks!

So I went to the GI doctor and he seemed like he did not even have a hunch as to what the problem is. He says its probably an ulcer. I asked him if he thinks my symptoms may be a result of gluten intolerance and he says he doesnt think so. He doesn't think a gluten intolerance will cause my symptoms to be so severe. He scheduled me for an endoscopy on Wednesday, but I don't know if he will perform a biopsy to look for Celiac. Should I insist on the Celiac route? I don't even know if I want to do the endoscopy anymore but suppose I should to rule out any serious problems. What do you guys think?

Personally, I'd go for the endoscopy as long as you're scheduled. Hopefully your GI dr. will take several biopsies...I'd insist on it. After all, he's already scoping you so this is the time to do it. And unless villous atrophy is especially severe, it's usually not visible to the naked eye. He will be able to see other things that might be going on. My dr. did see gastritis and duodenitis (inflammation), which was news to me. The actual biopsies will be examined by a pathologist as there may be damage only visible under a microscope.

As soon as the endoscopy is done, go on a strict gluten-free diet. Your body may give you the answers that doctors may be unable or unwilling to do. Unfortunately there are a lot of doctors who are rather clueless.

P.S. And you'll get some beautiful colored pictures to take home with you. :P

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