Doctor Shocked At My Refusal For Biopsy

[heathen]

You absolutely have the right to refuse a biopsy, but i don't think he can give you the "official" diagnosis without a positve gold standard test, especially if you aren't very symptomatic. also, i had an endoscopy and colonoscopy after my positive blood test, and the GI doc found a pre-cancerous polyp--probably saved my life since no one looks for colon cancer in an otherwise healthy person in their 20s. yes, the prep sucks, and you have to take a day off work, but it would be nice for you to know how much damage has been done and if you have responded to the diet.

[knittygirl1014]

I've seen a lot of doctors in the last few years, and I think their attitude is the most important indicator of how good of a doctor they are! If they are not willing to listen to you and treat you like a person, imagine what they will do in the future when you have more questions or something else go wrong. The same thing!

I was actually seeing a rheumatologist who gave me the option of getting the biopsy or just going gluten free. But the most important thing was that she was supportive and made it MY decision. (I didn't get the biopsy) My primary doctor is also very supportive, saying things like "well if you feel better, that's what's important!" And she didn't harass me about my weight gain either, when most doctors would. She knew that I was absorbing food again and it was pretty normal. I'm kind of glad I don't have a diagnosis on paper now, since my employment situation is uncertain and I may have to purchase insurance in the future. I don't want to get denied for a pre-existing condition.

There are plenty of doctors out there that are willing to work with you without their "gold standard."

[050321]

I'm wondering what doctor you went to because I went to the GI at Northwest Community in Arlington Heights and they practically did the same thing to me. When I went in to discuss my symptoms with them, I told the nurse that I thought I might have Celiac because I had almost all the symptoms. She told me that Celiac is extremely rare and that I don't have it. I was so angry because it's not as rare as once thought and she didn't even offer any test. She told me that I have IBS and that was it and wouldn't provide any information about Celiac or my options. Seriously, you're not going to even offer a blood test?! I know you're not supposed to start a gluten free diet without diagnosis, but I've been gluten free for two months now and my life has completely changed. I don't know if I feel like going back to the doctor and I don't know if I can even be diagnosed now because of my diet, but I also don't want to not eat gluten for the rest of my life without proof. But, I guess my health is proof enough, right?

[mushroom]

I'm wondering what doctor you went to because I went to the GI at Northwest Community in Arlington Heights and they practically did the same thing to me. When I went in to discuss my symptoms with them, I told the nurse that I thought I might have Celiac because I had almost all the symptoms. She told me that Celiac is extremely rare and that I don't have it. I was so angry because it's not as rare as once thought and she didn't even offer any test. She told me that I have IBS and that was it and wouldn't provide any information about Celiac or my options. Seriously, you're not going to even offer a blood test?! I know you're not supposed to start a gluten free diet without diagnosis, but I've been gluten free for two months now and my life has completely changed. I don't know if I feel like going back to the doctor and I don't know if I can even be diagnosed now because of my diet, but I also don't want to not eat gluten for the rest of my life without proof. But, I guess my health is proof enough, right?

A lot of these medical "professionals" are so out of date as to be archaic, and really belong in a fossil museum. One could laugh at them if it were not for the harm that they do. So many people have been denied the opportunity of a correct diagnosis, instead of this IBS crapola, by their refusal to test. So the patients figure it out for themselves and go gluten free, and then they say, Oh, you shouldn't have done that because now you can't be tested

There is absolutely no rule that says you have to have a doctor's permission to start a gluten free diet. It's your body, and your life, and you have to do whatever is necessary to take care of yourself. Yes, I would say your response is proof enough that gluten was harming you, and whether it is full-blown celiac, or gluten intolerance, the treatment is identical--exactly what you are doing. And, surprise, surprise, you no longer have IBS!!! You and I are rowing the same boat so do not feel alone. You are correct that you have to be eating a full-on gluten-filled diet for at least 2-3 months prior to any testing having a chance of being accurate, and I, like you, was definitely not prepared to do that. But I definitely would let those dinosaurs in Arlington Heights know that the gluten free diet cured your "IBS" and that you no longer need their help with that problem. However, you do need to go to your PCP and have testing for nutrient deficiencies; the most common ones to test for would be Vit. B12, folate, D and K, and also the minerals calcium, zinc, magnesium, and have your ferritin (iron) level checked. You run the risk of anemia and osteoporosis, among other things, if these levels are low. Hopefully your PCP will cooperate when you tell her your story. Read what you can on these boards and you fill find evidence to print out to back up your request. (Do an on-site google for discussions on these subjects and check out all the information at celiac.com.)

[oneonone72]

I was told by my GP's nurse that I tested positive for Celiac 2 weeks ago, so this past Friday, I met with a GI Dr. Basically, I paid him my co-pay to be told what I already knew. And then he told me I *need* to have a biopsy, even though all the blood work was positive (I need to ask for exact numbers, but I know that all tests were positive - though he said they were "mild"). I told him, I really didn't want the biopsy. He asked why. I said, because I felt it was invasive, and not even 100% accurate, so I didn't see the point.

He went on to tell me, and I quote, "It is the gold standard..." I still said, that at this time, I would rather do a gluten-free diet (even though I don't really have any symptoms to begin with). Finally, we agreed, I would do that and come back in a month or 2.

I asked him if other people refuse the biopsy, and he told me no, I was the first one. I have a difficult time believing this.

What really got me though, was when I would ask him questions about Celiac, he would respond that he can't really answer anything "until I have the biopsy"...even general questions about the disease. I was so annoyed.

And then he goes on to tell me how since I am a vegetarian, I am going to have a really tough time, and walks out the door. Oh gee, thanks Dr...way to give me confidence and be supportive. Personally, I am pretty proud of the fact that I am a vegetarian (who occasionally eats fish, so really a pescatarian if you want to get technical =)

Anyway..has anyone else experiences this...a Dr who basically doesn't want much to do with you until you get the biopsy so you can become a bona-fide statistic??

I am just outside of Chicago, and moving back into the city this year. I know University of Chicago has good Celiac Drs, so I was thinking maybe I will find one here, but then I am thinking..they may not want anything to do with me either, until I agree to the biopsy

I was diagnosed Aug. 2007. I never had any of the usual symptoms. However, I did notice my jeans were hanging awfully low on hips. I was always pulling them up. What I didn't realize was that I was losing weight. I faithfully walked every day for many years. I just thought the weight loss was from that. My celiac was discovered when my family doctor did my yearly cholesterol test. The tests showed that my liver enzymes were higher then normal so she had the test repeated again after six months. When the results came back, the enzymes were still high. She repeated the blood test again after six months and the enzymes were still. I finally suggested to her that maybe it was time to see a specialist. She agreed. My gastroendocrinologist was very knowledgeable. He said he was taught in med-school to ALWAYS do a celiac panel (blood work) on a patient. When that came back positive he still wanted to do an endoscopy. The results were 100 percent that I had celiac disease. I guess you have to find the right doctor who is knowledgeable about the disease.