259 replies to this topic

[smjb]

Yesterday my doctor said that even though my serologies were positive, we needed to do a biopsy to confirm. Then, if positive, we'd do another biopsy in a few months after being on a gluten-free diet. But most people don't need the 2nd biopsy because their bloodwork comes back negative.

My thoughts: So, we can't trust positive results from the bloodwork but we can trust negative results??? What???? What makes those negative results so much more reliable than the positive ones??

Then, she goes on to say that she doesn't want me going on a gluten-free diet without a positive biopsy because gluten-free diets are "extremely difficult and hard to follow".

My thoughts: So, if the biopsy comes back positive, will a gluten-free diet then be easier to follow and not so difficult?? Doubtful. She pretty much just sent all her negative energy towards me about a gluten-free diet!!! Doomed no matter what is the message I got.

I went on the internet last night and found that many people who test positive to the antibodies and have negative biopsies later develop full-blown celiac, which is probably worse than it might have been had they started a gluten-free diet when the serologies were positive.

UGH.

[Bubba's Mom]

Yesterday my doctor said that even though my serologies were positive, we needed to do a biopsy to confirm. Then, if positive, we'd do another biopsy in a few months after being on a gluten-free diet. But most people don't need the 2nd biopsy because their bloodwork comes back negative.

My thoughts: So, we can't trust positive results from the bloodwork but we can trust negative results??? What???? What makes those negative results so much more reliable than the positive ones??

Then, she goes on to say that she doesn't want me going on a gluten-free diet without a positive biopsy because gluten-free diets are "extremely difficult and hard to follow".

My thoughts: So, if the biopsy comes back positive, will a gluten-free diet then be easier to follow and not so difficult?? Doubtful. She pretty much just sent all her negative energy towards me about a gluten-free diet!!! Doomed no matter what is the message I got.

I went on the internet last night and found that many people who test positive to the antibodies and have negative biopsies later develop full-blown celiac, which is probably worse than it might have been had they started a gluten-free diet when the serologies were positive.

UGH.

Typical.
False positives aren't very likely with blood work. The endoscope is mainly to confirm..and assess the level of villi damage.

Maybe she meant the REscope wasn't usually needed after starting the diet and redoing the blood tests show that the Celiac levels have gone down(are negative)?
I'm trying to give her the benefit of doubt here.

If you have positive blood work..and no damage when scoped..congratulations! They caught it early. Stay gluten-free...even if it's hard. Doh!

[Sarunski]

My doctor situation when I found out I had Celiac.

Background: My initial doctor who requested blood tests for the Celiac got called for duty and shipped overseas. So my mom and I had to go in and see a completely new doctor who clearly had barely read my file.

Doctor, looking at my file: Do you have a problem with wheat?

Me: Yeah...

Doctor: Oh good cause you have Celiac Sprue Disease. (This is a good thing?)

Me: *facepalm* well what does that mean?

Doctor: You can't eat anything with gluten, but I'm not an expert so you should google.

Me: Okay well am I more susceptible to any allergies or diseases?

Doctor: I just said I'm not an expert, just don't eat gluten okay? If you want to know about your problem, google it. *walks out*

So rude! Luckily, I found this site and a lot of my questions were answered

[Bubba's Mom]

My doctor situation when I found out I had Celiac.

Background: My initial doctor who requested blood tests for the Celiac got called for duty and shipped overseas. So my mom and I had to go in and see a completely new doctor who clearly had barely read my file.

Doctor, looking at my file: Do you have a problem with wheat?

Me: Yeah...

Doctor: Oh good cause you have Celiac Sprue Disease. (This is a good thing?)

Me: *facepalm* well what does that mean?

Doctor: You can't eat anything with gluten, but I'm not an expert so you should google.

Me: Okay well am I more susceptible to any allergies or diseases?

Doctor: I just said I'm not an expert, just don't eat gluten okay? If you want to know about your problem, google it. *walks out*

So rude! Luckily, I found this site and a lot of my questions were answered

wow. That's pretty close to how I was told about my DX..except the Dr. was nice. She said "you have Celiac. Don't eat gluten. Look it up online." These Dr.s are announcing we have a disease that will change our lives forever and this is the way they deliver that news?
I'm glad we both found this site!

[mushroom]

wow. That's pretty close to how I was told about my DX..except the Dr. was nice. She said "you have Celiac. Don't eat gluten. Look it up online." These Dr.s are announcing we have a disease that will change our lives forever and this is the way they deliver that news?
I'm glad we both found this site!

Well, I have to chine in here -- tjhey know by now that that's what we're going to do anyway And they know they know nothing about it. So why make themselves look any more foolish???

[Bubba's Mom]

Well, I have to chine in here -- tjhey know by now that that's what we're going to do anyway And they know they know nothing about it. So why make themselves look any more foolish???

[Mom23boys]

I have too many stupid dr stories so I will stick with the latest.

I went to the dr for woman issues. He said it was because I'm a little overweight. OK, whatever. We proceeded to discuss my diet -- no wheat, no this, no that. He then puts me on this specialized diet. I tell him it is only 1 ingredient different than what I'm on and I don't think it is going to work. He insists I go on it. OK. After a few weeks I'm not losing like he thinks I should so he starts belittling me for not following his diet. I keep trying to tell him I am following it and there is something else wrong. A few appointments later he dismisses me and tells me I can come back when I can give up the twinkies and ding dongs. I could NOT get across to him that we do NOT eat twinkies and ding dongs. I now have a thyroid diagnosis that is just days old. If I start losing with this, I'm going to have to at least say something.

[Bubba's Mom]

I have too many stupid dr stories so I will stick with the latest.

I went to the dr for woman issues. He said it was because I'm a little overweight. OK, whatever. We proceeded to discuss my diet -- no wheat, no this, no that. He then puts me on this specialized diet. I tell him it is only 1 ingredient different than what I'm on and I don't think it is going to work. He insists I go on it. OK. After a few weeks I'm not losing like he thinks I should so he starts belittling me for not following his diet. I keep trying to tell him I am following it and there is something else wrong. A few appointments later he dismisses me and tells me I can come back when I can give up the twinkies and ding dongs. I could NOT get across to him that we do NOT eat twinkies and ding dongs. I now have a thyroid diagnosis that is just days old. If I start losing with this, I'm going to have to at least say something.

[carlao]

Went to the doctor for extreme fatigue, sore throat, swollen glands at base of neck. After a 2 minute exam, was prescribed antibiotics for a sinus?!? infection.

Ten days later, I went to a new doctor who immediately ordered thyroid tests and I was diagnosed with subacute thyroiditis.

I think we will go with the new doc.

[pricklypear1971]

I have too many stupid dr stories so I will stick with the latest.

I went to the dr for woman issues. He said it was because I'm a little overweight. OK, whatever. We proceeded to discuss my diet -- no wheat, no this, no that. He then puts me on this specialized diet. I tell him it is only 1 ingredient different than what I'm on and I don't think it is going to work. He insists I go on it. OK. After a few weeks I'm not losing like he thinks I should so he starts belittling me for not following his diet. I keep trying to tell him I am following it and there is something else wrong. A few appointments later he dismisses me and tells me I can come back when I can give up the twinkies and ding dongs. I could NOT get across to him that we do NOT eat twinkies and ding dongs. I now have a thyroid diagnosis that is just days old. If I start losing with this, I'm going to have to at least say something.

Oh geez.

How is that doc not strung up by his heels in a public forum??

[IrishHeart]

A few appointments later he dismisses me and tells me I can come back when I can give up the twinkies and ding dongs. I could NOT get across to him that we do NOT eat twinkies and ding dongs. I now have a thyroid diagnosis that is just days old. If I start losing with this, I'm going to have to at least say something.

O M G and sunova....

PLEASE tell me you are going back to tell this jerkward you have a thyroid DX! Look him right in the face. This guy was not only out of line with his comments--he left you UnDXed!!!

This makes me crazy --as it is all too familiar (see my posts)--and I fear, it goes on more often than we will ever know.

[IrishHeart]

Went to the doctor for extreme fatigue, sore throat, swollen glands at base of neck. After a 2 minute exam, was prescribed antibiotics for a sinus?!? infection.

Ten days later, I went to a new doctor who immediately ordered thyroid tests and I was diagnosed with subacute thyroiditis.

I think we will go with the new doc.

Sadly, this is what they do--give antibiotics for every damn thing. I had similar experiences. I would often just toss the script away, knowing full well, it was not the answer to the problem I was having.

(this is also why we have more gut issues--unbalanced gut bacteria)

Glad you found a good doctor!

[love2travel]

I have too many stupid dr stories so I will stick with the latest.

I went to the dr for woman issues. He said it was because I'm a little overweight. OK, whatever. We proceeded to discuss my diet -- no wheat, no this, no that. He then puts me on this specialized diet. I tell him it is only 1 ingredient different than what I'm on and I don't think it is going to work. He insists I go on it. OK. After a few weeks I'm not losing like he thinks I should so he starts belittling me for not following his diet. I keep trying to tell him I am following it and there is something else wrong. A few appointments later he dismisses me and tells me I can come back when I can give up the twinkies and ding dongs. I could NOT get across to him that we do NOT eat twinkies and ding dongs. I now have a thyroid diagnosis that is just days old. If I start losing with this, I'm going to have to at least say something.

How do these people (and I use the term loosely) sleep at night and live with themselves? Seriously. Do they teach arrogance and cruelty in U.S. med schools? This pathetic story reminds me yet again how fortunate I am to have the doctor I have. Good listener, empathetic, compassionate and humble.

Man, I really feel for you. If a doctor told me that, I just know I would have a difficult time not crying right there in the office. Either that or body checking him against the wall. OK, that is a bit much, I know...

[Mateto]

When you're bent over in pain in the doctor's office, the doctor comes in, looks at you, and asks cheerily "And how are we today!".



I think my answer alone caused her to test me for more than coeliac disease.

[ElitaSue]

The best worst I've ever had a doctor say to me was from a Neurologist.

"Could be a brain tumor, could be a panic attack, won't know til the 2nd MRI" and then walks out of the room.

I paid $300 bucks for that (by the way, that's all he said to me) - turned out to be a lesion.