Another Amazing Doctor!

[penguin]

I am 3 for 3 for awesome doctors in Austin! I think all of you with whack-jobs in Florida should move here

Everything from beginning to end with my gastro appointment was great, well, other than waiting a long time, but that's anywhere!

I took my worlds-longest-list-of-symptoms to the dr, and I saw his PA first. They didn't think I was nuts! She asked questions, did an exam (she found a heart murmur ) and told me that I'm clearly at least gluten intolerant, and that they'll do the endoscopy but it may come back negative. She said that I'd need to be gluten-free even if they came back negative. She also told me they do 8 or 10 samples for the biospy from as many random places as they can

I was so impressed. Amazed, actually.

They're doing an iron study since I have small RBC's, and a bone density scan. They're waiting untl August to do the endo so that we'll have the highest possible chance of getting accurate biopsies. Did I mention that both my dr and his PA have gone up to see Dr. Green's seminars? And that they've both spoken with him?

He also gave me gluten-free fiber He said that gluten-free fiber was important since gluten is causing the problem, no reason to compound it!

Awesome awesome awesome! Further confirmation that I'm not crazy!!!

GOOD DOCTORS DO EXIST! IT'S NOT JUST AN URBAN LEGEND!

Edit: The PA also said that it probably started when I was little and had stomach aches that the dr's chalked up to a sensitive stomach. She said, "well, the average time of diagnosis is 11 years after symptoms start. Looks like you're already way beyond that" Put it that way, I've had this for 16 years!

[VydorScope]

Thats great!!

But I have a question for you... if your going gluten-free reguardless of the neg bisopy... why do it?

[penguin]

  VydorScope said:

Thats great!!

But I have a question for you... if your going gluten-free reguardless of the neg bisopy... why do it?

Because I really AM nuts.

One reason is because of insurance, I have celiac as a dx on my record now, but if the biopsy is negative, then they can't dx celiac. Fewer insurance complications down the road. Also, if I never got the biopsy, I would wonder forever whether it was real or not and I would keep challenging myself. If I know it's an intolerance, and I have two doctors saying it, I'm going to process it better. Does that make sense?

Having the dr. agree with me is also convincing my mom that everybody in our family needs to be tested, and that I'm not a hypochondriac. Big plus!

[VydorScope]

  ChelsE said:

Because I really AM nuts.

OH! OKay! well that makes perfect sense then.

[jerseyangel]

Told you it was going to be ok! Really, I'm glad all went so well, and I also understand why you need to persue this.

[Guest nini]

glad it was a good visit, although I'm still struggling with understanding why you need to do the biopsy... I get the whole insurance thing, believe me... I was denied insurance coverage from several companies because of having a Celiac dx on my record, but you know what? I didn't have the biopsy either, not gonna. I don't really care about the insurance companies at this point and stand ready to argue with them if they DARE to try to deny me coverage again because of this. I am armed to the teeth with information about how much healthier I am NOW with the Celiac dx, following the gluten-free diet, than I EVER was before this dx. So in my opinion having a Celiac dx is a BONUS for them. It means that they are less likely to have to pay for ongoing health complications. Since my dx, I've only been in to the Dr. for standard yearly exams and ONE sick visit with a bladder infection (NOT RELATED!!!)

sorry to go off on a tirade but I think we need to be strong and believe in ourselves and stand up to these insurance companies that try to deny us coverage because we are now finally getting HEALTHY! Just ask them, would they rather you continue to be sick?

I ask you, do you really want to continue eating gluten and making yourself sick until AUGUST???? I wouldn't.

I'm really not trying to be difficult, like I said before I'M the one grasping with trying to understand your reasons but that is MY problem not yours so ignore me if I've said anything wrong. I mean well. I just want you to start getting better TODAY.

[penguin]

  nini said:

I'm really not trying to be difficult, like I said before I'M the one grasping with trying to understand your reasons but that is MY problem not yours so ignore me if I've said anything wrong. I mean well. I just want you to start getting better TODAY.

It's just something I need to do. I know me, and if I didn't have confirmation I would be hemming and hawing back and forth for years wondering what would have happened if I had the biopsy. I would be more likely to challenge myself all the time, and that's not something I need to do. The difference between your celiac diagnosis and mine is that my blood tests were totally inconclusive, and I'm not comfortable with having a celiac diagnosis on my record with just dietary response (though yes, that is a valid diagnostic tool). I'm simply not comfortable having that diagnosis without having all of the testing I should. An intolerance, sure, no problem. Celiac, not so much.

Thanks again for your concern! I really do appreciate it, but I have to do this for my own peace of mind. Call it naivete on my part, but I gotta do it.

Although being on gluten until August is going to suck.

[Guest nini]

you do what you gotta do... just know that I care about you and don't want you to be ill any longer than you have to be... what's gonna happen IF the biopsy is inconclusive too? I hope that's not the case, I don't want you doubting this. In my humble unprofessional opinion you already have your proof... I am of the opinion that there is no difference between Celiac and Gluten Intolerance, I know the technical stuff about biopsy being gold standard, blah blah blah, but I just have seen so many instances of people that had negative or inconclusive biopsies and were told they could continue to eat gluten only for them to get extremely ill and then show up with a positive biopsy after they've done irreperable damage to their body (other illnesses that were caused because of gluten) and I've talked to experts in the field that have told me that the biopsy is no longer the gold standard even though it is still currently accepted as such. The biopsy is so flawed, sure it can confirm Celiac, but it also misses sooooooo many Celiacs...

I'm not trying to change your mind, just explaining where I'm coming from... {{{{{{{{{{{{HUGS ok?}}}}}}}}}}}}}}}

[ravenwoodglass]

  nini said:

you do what you gotta do... just know that I care about you and don't want you to be ill any longer than you have to be... what's gonna happen IF the biopsy is inconclusive too? I hope that's not the case, I don't want you doubting this. In my humble unprofessional opinion you already have your proof... I am of the opinion that there is no difference between Celiac and Gluten Intolerance, I know the technical stuff about biopsy being gold standard, blah blah blah, but I just have seen so many instances of people that had negative or inconclusive biopsies and were told they could continue to eat gluten only for them to get extremely ill and then show up with a positive biopsy after they've done irreperable damage to their body (other illnesses that were caused because of gluten) and I've talked to experts in the field that have told me that the biopsy is no longer the gold standard even though it is still currently accepted as such. The biopsy is so flawed, sure it can confirm Celiac, but it also misses sooooooo many Celiacs...

I'm not trying to change your mind, just explaining where I'm coming from... {{{{{{{{{{{{HUGS ok?}}}}}}}}}}}}}}}

Glad you found good doctors but I agree with everything Nini has said. Couldn't have put it better myself.

[mouse]

You know, I can understand why you have to do this. If I was in your shoes, I would go for it. After I was treated like a hypochondriac for many many years, I would need the diagnosis for my own piece of mind. That all that time I was really sick and they blew me off. But, my shoes were almost gone, before I got the diagnosis. I think for some people that an official diagnosis is necessary so that they KNOW they really do have to follow the diet. And I am so glad you found ANOTHER wonderful doctor. And it is great that the PA said that you would still have to go gluten-free even if the biopsy was normal as you were gluten intolerant. The only negative to my opinion is that you also have to really consider that you are going to make yourself suffer for a biopsy that might miss the right areas. Too many do come back negative and I do think you need to consider that. Will I certainly gave both pros and cons to your decision, didn't I

[VydorScope]

I understand where your comming from Chesle, in fact I pushed and pushed and did hte same and turned out I do not have celiac disease at all... had I not pushed I would still be getting sicker and sicker instead of finaly getting a grip on things... yours sounds so much more clear cut, but I still understand your pushing for a "real" DX, it just sucks what you have ot go through to get it!

[penguin]

  nini said:

you do what you gotta do... just know that I care about you and don't want you to be ill any longer than you have to be... what's gonna happen IF the biopsy is inconclusive too? I hope that's not the case, I don't want you doubting this. In my humble unprofessional opinion you already have your proof... I am of the opinion that there is no difference between Celiac and Gluten Intolerance, I know the technical stuff about biopsy being gold standard, blah blah blah, but I just have seen so many instances of people that had negative or inconclusive biopsies and were told they could continue to eat gluten only for them to get extremely ill and then show up with a positive biopsy after they've done irreperable damage to their body (other illnesses that were caused because of gluten) and I've talked to experts in the field that have told me that the biopsy is no longer the gold standard even though it is still currently accepted as such. The biopsy is so flawed, sure it can confirm Celiac, but it also misses sooooooo many Celiacs...

I'm not trying to change your mind, just explaining where I'm coming from... {{{{{{{{{{{{HUGS ok?}}}}}}}}}}}}}}}

I know totally where you're coming from, and I completely respect your opinion and agree with your reasoning, and most of your points

Hugs are perfectly fine Seriously, not mad at all!

Both the PA and the doctor both said that I'm going to have to be gluten-free regardless, so no worries on them telling me it'll be ok to eat gluten. Part of it is wanting to know how much damage, if there is damage, there is. I clearly CLEARLY have an intolerance, I (and the doctors) want to know if there is damage (yet). There's nothing wrong with getting a second opinion for a lifetime diagnosis.

Also, I don't mind the endoscopy. I had one two years ago (biopsied for cancer in stomach lining, no celiac testing) and it wasn't bad, so that part isn't putting me out. Half a day on drugs with a needle in my arm is worth the knowledge of what's potentially going on. I also want to know if my stomach lining is still so inflamed

Thanks for the concern guys!

[miles2go]

  ChelsE said:

Because I really AM nuts.

One reason is because of insurance, I have celiac as a dx on my record now, but if the biopsy is negative, then they can't dx celiac. Fewer insurance complications down the road. Also, if I never got the biopsy, I would wonder forever whether it was real or not and I would keep challenging myself. If I know it's an intolerance, and I have two doctors saying it, I'm going to process it better. Does that make sense?

Having the dr. agree with me is also convincing my mom that everybody in our family needs to be tested, and that I'm not a hypochondriac. Big plus!

ChelsE, so glad that you had a positive medical experience! I had one recently, too...and I think you explained quite well why some of us need the dx, as I'd always be questioning myself down the road, but also have family members who really need to be tested. I've got a young niece who was dx'd with wheat allergy, but who is now eating wheat with no symptoms, except that she's skinny as a rail.

I don't know if I'll go any farther myself with pursuing a dx if my dh biopsy comes back negative. The couple of weeks that I was eating gluten were enough to convince me after being a year gluten-free. But it sure would be nice to know for sure, as I already have an insurance company.

I actually logged on just to see how you were doing.

All the best in the upcoming months!

Margaret <= a displaced Texan from Seguin

[Felidae]

That's really great. I am so happy for you.

[Guest nini]

glad you aren't mad at me... I just felt like I had to explain where I was coming from... good luck to you...

[penguin]

Well, the results of the iron study came back...I knew I was anemic, but I didn't think I was THAT anemic!!!

Here were levels:

Hematocrit 19 when over 40 is normal

Saturation was 4 when 20%-50% is normal

Ferritin was 4 when over 10 is normal

Holy hell.

Since I don't tolerate vitamins well, I see a lot of liverwurst and spinach in my immediate future

Freaks me out about what the bone density study will bring...

[schuyler]

  ChelsE said:

Well, the results of the iron study came back...I knew I was anemic, but I didn't think I was THAT anemic!!!

Here were levels:

Hematocrit 19 when over 40 is normal

Saturation was 4 when 20%-50% is normal

Ferritin was 4 when over 10 is normal

Holy hell.

Since I don't tolerate vitamins well, I see a lot of liverwurst and spinach in my immediate future

Freaks me out about what the bone density study will bring...

This is kind of weird because those are exactly the same as the results that I got today from my tests

My doc gave me a shot of furrous sulfate (which was so painful) and told me to eat lots of spinach and drink orange juice with it (I guess vitamin C helps the absorbsion of iron).

Good luck with your bone density study.