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Warrior Woman

I Am Done With Dr's

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I went to my thrid gastro doctor yesterday and I am done.

The fisrt doctor decided I was not eating enough fiber, gave me a paper with a list of foods that are high finer. He never asked how much I ate- which is a lot. I left w/o making another appointment

The second doctor set me up to get scoped immediately. While I was waking up, he told me he took some biopsies to check for celiac. For two weeks I didnt eat any gluten. I felt remarkable. Every issue I had, and that is an extensive list, was getting better. I went back fo rthe results and all he can tell me was that the biopsies were normal. No matter what my comment or question was, he replied that the biopsies were normal. I left.

Yesterday I saw the third doctor. I forced the issue of a blood test even though he said celiac was rulled out by the biopsies.

This is what I know: Without gluten I am alive and without pain, with it I am a disaster. I dont care what they say. I am tired of living like this (eating gluten) so I can gt a true result. Whether I am gluten intolerant or celiac, it doesnt matter. I am not eating it. I am not doing another biopsy.

Although I am a science driven person and love numbers (I have an excel doc that tracks my weight and meaasurements in 11 different places, chart my loses, track my cholestrol) I do know that 'proof' of certain things can get lost in the perfection of the tests and numbers. For instance the whole thing with vitamins. Science has to isolate one vitamin and overdose people to see what happens. It is documented that vitamins and phytochemical work together. An overabundance of one w/o the other isnt going to give positive results- but that is what is reported and flashed on the nighlty news.

No one has died or been harmed from the lack of gluten. I am not eating it any longer

Lorraine

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Lorraine, good for you! Tests aren't full proof. It's likely that your 2nd doctor didn't do enough biopsies to catch any villous atrophy. Just because you had a negative biopsy does NOT mean that you don't have Celiac disease. Also, even if your bloodwork comes back negative, that still doesn't mean that you don't have Celiac. Most on this board will say that a positive reaction to the gluten free diet is the best diagnosis you can recieve. If it makes you feel better, than I say GO GLUTEN FREE!!! Your body knows what's best for itself.

Good luck! I hope you feel better soon!

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I went to my thrid gastro doctor yesterday and I am done.

The fisrt doctor decided I was not eating enough fiber, gave me a paper with a list of foods that are high finer. He never asked how much I ate- which is a lot. I left w/o making another appointment

The second doctor set me up to get scoped immediately. While I was waking up, he told me he took some biopsies to check for celiac. For two weeks I didnt eat any gluten. I felt remarkable. Every issue I had, and that is an extensive list, was getting better. I went back fo rthe results and all he can tell me was that the biopsies were normal. No matter what my comment or question was, he replied that the biopsies were normal. I left.

Yesterday I saw the third doctor. I forced the issue of a blood test even though he said celiac was rulled out by the biopsies.

This is what I know: Without gluten I am alive and without pain, with it I am a disaster. I dont care what they say. I am tired of living like this (eating gluten) so I can gt a true result. Whether I am gluten intolerant or celiac, it doesnt matter. I am not eating it. I am not doing another biopsy.

Although I am a science driven person and love numbers (I have an excel doc that tracks my weight and meaasurements in 11 different places, chart my loses, track my cholestrol) I do know that 'proof' of certain things can get lost in the perfection of the tests and numbers. For instance the whole thing with vitamins. Science has to isolate one vitamin and overdose people to see what happens. It is documented that vitamins and phytochemical work together. An overabundance of one w/o the other isnt going to give positive results- but that is what is reported and flashed on the nighlty news.

No one has died or been harmed from the lack of gluten. I am not eating it any longer

Lorraine

You have alot of company when it comes to stupid doctors. I am glad you have decided to listen to your body. The gluten police are not going to come and toss us in a bread walled jail if we decide to forgo this poison. You know what your body is telling you and your body will appretiate your listening to it. Welcome to the family

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This is what I know: Without gluten I am alive and without pain, with it I am a disaster. I dont care what they say. I am tired of living like this (eating gluten) so I can gt a true result. Whether I am gluten intolerant or celiac, it doesnt matter. I am not eating it. I am not doing another biopsy.

Although I am a science driven person and love numbers (I have an excel doc that tracks my weight and meaasurements in 11 different places, chart my loses, track my cholestrol) I do know that 'proof' of certain things can get lost in the perfection of the tests and numbers. For instance the whole thing with vitamins. Science has to isolate one vitamin and overdose people to see what happens. It is documented that vitamins and phytochemical work together. An overabundance of one w/o the other isnt going to give positive results- but that is what is reported and flashed on the nighlty news.

No one has died or been harmed from the lack of gluten. I am not eating it any longer

Lorraine

What you have done is the diet challeng, of sorts, and it is a very valid dx tool. I mentioned to my current gp that I was dx'd by diet alone 10 yrs ago and never had any of the "official tests". He saw no need for me to take tests since I KNOW what happens to me on gluten and the symptoms pre-dx were in line with celiac. His take on the current tests are that they are not reliable or sensitive enough to rely on them 100%, even though the medical community in general seems to think so. And believe it or not, some of the more forward thinking (I so wish I had bookmarked where I read it) in the medical community are now coming to the conclusion that maybe the current tests are not reliable enough and that (SURPRISE) the diet challenge IS the best test! Can you imagine? US, lowly laypeople, knowing what is best for OUR bodies?

Anyhow, I think you have found your answer through empirical proof (symptoms on and off of gluten) so just get started with the healing process!

Keep us posted on your progress and please don't be embarassed of any questions you might have. It's all been asked before.

Annette

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Guest nini

Good for you! We all need to listen to our bodies more and stop putting the Dr.s up on a pedastal. Sure they know a lot about a lot of things, but when it comes to Celiac and Gluten Intolerance, the medical community is sadly lacking in it's ability to understand that dietary response is an extremely valid and accurate diagnostic tool!

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My story is very similar. I went to enterolab only because I have kids and wanted to know what genes I had to pass on to them. I got my numbers ... but they didn't tell me anything I didn't already know. The doc wanted to start looking elsewhere for my problems, I kept telling him I felt fine if I avoided gluten, and he wouldn't stop talking about my possible gall bladder problems. I never called him back and now turn here for answers.

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Thanks to all for the words of kindness and support-

I too have a daughter and am worried that I could have passed it on to her. I also have siblings and am worried my niece may have it. Because it is genetic, I wanted a final, authorative test I could bring to my family to force them to test as well. But in reality, I dont think that would do anything. All I can do is take care of myself and my child.

Living life gluen-free

Lorraine

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Hi Lorraine: I was diagnosed with Celiac three years ago. My Mother has it. Now we find out that my Father has both celiac genes as well. My sister went for a biopsy and was told she did not have Celiac. I insisted that she send her slides to Dr Fasano at University of Maryland. They looked at them and said that she DOES have Celiac. The reading of slides and blood work is not a perfect science. Keep believing in your body. Margie

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I am sorry to hear about all you have been through. Many doctors just don't know what they should about celiac and let so many cases pass by. I think there should be routine testing for celiac since it is so common. I think many of us here agree that your body can tell you way more than any doctor ever could.

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I went to my thrid gastro doctor yesterday and I am done.

The fisrt doctor decided I was not eating enough fiber, gave me a paper with a list of foods that are high finer. He never asked how much I ate- which is a lot. I left w/o making another appointment

The second doctor set me up to get scoped immediately. While I was waking up, he told me he took some biopsies to check for celiac. For two weeks I didnt eat any gluten. I felt remarkable. Every issue I had, and that is an extensive list, was getting better. I went back fo rthe results and all he can tell me was that the biopsies were normal. No matter what my comment or question was, he replied that the biopsies were normal. I left.

Yesterday I saw the third doctor. I forced the issue of a blood test even though he said celiac was rulled out by the biopsies.

This is what I know: Without gluten I am alive and without pain, with it I am a disaster. I dont care what they say. I am tired of living like this (eating gluten) so I can gt a true result. Whether I am gluten intolerant or celiac, it doesnt matter. I am not eating it. I am not doing another biopsy.

Although I am a science driven person and love numbers (I have an excel doc that tracks my weight and meaasurements in 11 different places, chart my loses, track my cholestrol) I do know that 'proof' of certain things can get lost in the perfection of the tests and numbers. For instance the whole thing with vitamins. Science has to isolate one vitamin and overdose people to see what happens. It is documented that vitamins and phytochemical work together. An overabundance of one w/o the other isnt going to give positive results- but that is what is reported and flashed on the nighlty news.

No one has died or been harmed from the lack of gluten. I am not eating it any longer

Lorraine

Hi Lorraine

Im with you on this one - wholeheartedly!

I have been suffering with a mulitude of symptoms too for many years. When the last consultant i saw suggested i might have celiac disease and ordered the tests i did my own research and it was ike a light bulb going on!

I had the tests and then decided i had nothing to lose by cutting out gluten, after about 10 days i had a clear head and a lot less pain as well as other symptoms diminishing. Recently i have tested my reaction to gluten and it is not good, the pain came back 10 times worse, my stomach bloated so much i had to wear a size larger trousers and i generally feel terrible, very depressed.

I get my test results on the 22nd may but i know that whatever the results are i am staying clear of gluten for the rest of my days. I have had a taste of how it feels to be well and happy after far too long feeling ill and depressed. I dont want to go back there again.

Take care

Bev

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BEEN THERE DONE THAT!! good for you. you know your body, we have been down the same road with our daughter..she has a feeding tube, asthma, iron defiecincy, and sleep apnea. we didn't listen to her body before listening to the doctors. you will definently find lot of support here, good luck

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The last gastro doctor appt I went to sounded like this: (After he has already seen me twice)

Doc: "Melanie, so it looks like you have Celiac Disease."

Mel: (You told me this before) - "Yes."

Doc: "You know you can't eat wheat."

Mel: "Yes" (And so much more)

Doc: "How are you feeling."

Mel: "100% better."

Doc: "Ok, we'll see you in six months."

I am thinking, did I just pay $95 for that absolutely stupid conversation?????

I told him to write a script for all the blood work, three times and finally he did. What an idiot. Time to find me a new doctor. Obviously.

I don't think I would be where I am now, if I didn't have all of you out there replacing the incompetent doctors. THANK YOU!!!

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It is amazing how much they DONT know!!

This last doctor was nice enough, but DUDE!! WHY DO I KNOW MORE THAN YOU ABOUT CELIAC?!?!? GOD, FLIPPIN IDIOT (said with the Napolean Dynamite tone)

This is my second day being gluten-free and started feeling better last night. This morning I woke up w/o the usual stomach pains/nausea. And that is good enough for me~~

Signed,

Lorraine

The personal expert on her own health

ps- this is why my name is 'Warrior Woman'- I feel like I have to do battle with the doctors, the school district, the college I go to..... Why cant people just do what they are suppose to do?!?!?

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Thanks to all for the words of kindness and support-

I too have a daughter and am worried that I could have passed it on to her. I also have siblings and am worried my niece may have it. Because it is genetic, I wanted a final, authorative test I could bring to my family to force them to test as well. But in reality, I dont think that would do anything. All I can do is take care of myself and my child.

Living life gluen-free

Lorraine

Oh yeah, there are people who continue to eat gluten even when they know 100% that it is harming them. Getting your family interested in their own health, when it comes to giving up a favorite food... forget about it! I told my entire family and urged them to get tested. None of them want to do it. Very frustrating.

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Guest nini

I can't get anyone in my family to get tested... they don't want to even consider giving up their favorite foods... even when they know that their health issues are gluten related

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I was sitting here reading this thinking I am in total agreement. I was diagnosed in December and last week was also diagnosed with Crohn's Disease. The doctor said well you have both and that really sucks. Do you want any scripts, oh okay, see you when you need me. What is that? I knew more than the dietician she sent me too. She gave me some pamphlets to read and said sounds like you know more than me? WHAT???

I even work with someone who has it and is emphatic that I dont have it because I havent lost tons of weight like she did. But I have also been sick for close to 15 years and they just know after 50 scopes of every kind and having my gall bladder out they said oh well maybe it is this? Makes you wonder...I am having such a hard time with the diet and my husband is like just dont eat what makes you sick..God love him, he means well. I felt so all alone until I saw this page and finally feel like hey I am not abnormal. Am also worried about my 2 girls who already have pre genetics disposition from my husband who has Sarcoid disease which is another disease that is autoimmune. Thanks for letting me vent and feel free to holler, your postings have made me feel a lot better today that I am not alone with this....

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