Met With Gastro Doc For 1st Time

[BostonCeliac]

Hello ---

I finally met with my Gastro Doc (took over a month to get an appt) yesterday. I had blood tests a month & a half ago or longer for celiac & they came back 'positive' as well as iron levels Very low (as they have been for years).

Quick History -- my sister was diagnosed two years ago (after a long time not being able to figure out what was wrong) and I have been anemic for about 6 years, but never got tested because I felt fine until a few months ago, and realized I should get tested since it seems I most likely have it.

SO -- went into MGH to meet the Doc, and I must say, I was very surprised to find he gave me a few options to proceed, and did not seem to push the endoscopy. He said I could: 1. Get an endo, 2. Try the gluten free diet & see how I feel (saying it was a very difficult diet, duh), and 3. JUST WAIT LONGER --- I was shocked to hear him suggest that I just not do anything because he said, "my symptoms were early on and not that bad". (!)

Anyone else get this? I figured the fact that I was there getting tested in the early stages was a positive thing! Then he asked if I planned on having children -- I said, Yes, eventually, but not in the near future -- and he was like, well, you should have this under control by that point... OBVIOUSLY.

Anyway, this guy didn't seem to know what celiac was, and he's one of the head GI Docs at Mass General! His nurse didn't even know how to spell C-E-L-I-A-C!

SO, all that being said, I said I defintiely want the Endoscopy to know for sure, and I'm getting it done next Friday, Why wait any longer when this is probably what is wrong?!

Thanks for letting me vent -- wondering if anyone else had similar issues. I think I'm a bit biased too since my sis has had it for 2 years so I've learned alot about this from her...

Have a great Thursday!

[wolfie]

Yikes!! Glad you opted to get the biopsy. Even if it is negative you may benefit from trying out a gluten-free diet if you feel the need to try. I can't believe he suggested that you wait a while!!!

Good luck on your endoscopy!

[Guest nini]

The biopsy can still miss damage if it's still in the early stages, or they don't take enough samples or they don't take samples from a damaged area, so don't put too much stock in the biopsy. You already have your answer. Since you are set on getting the endoscope, good luck with it, but you don't need it. The only thing it's going to tell you is if they FIND damage. Positive Blood work means you do have it, so there is no IF about it. As soon as you are done with your endoscope start the diet. Regardless of what the results of the endoscope are.

[BostonCeliac]

Thanks Wolfie & Nini for your responses...

Wolfie -- I know! I was so surprised he said to wait, from everything I've read online & in this forum, it seems the earlier detected & treated, the better off I am.

Nini -- I WAS going to "put a lot of stock in the biopsy", so thanks for pointing that out. I didn't ever think it might come back negative (since I'm convinced I have it)... My question is, why do the DOCs say not to trust the blood tests, when everyone here says you should? My sisters DR, my regular physician & this GI doc say you need to get it to confirm -- I'm confused...

THANKS

[Mayflowers]

I would seriously SWITCH to another doctor. I would so some research and find one experienced in celiac if I were you. Endoscopy will make a nice buck for your doctor. You know you're a celiac now so just get gluten free and get on with your life. It's curable. No gluten. Ever. Why even go to any more doctors or back to this uninformed GI?

KISS method.

Diana

[Guest nini]

I can understand your confusion. Many Dr.s are still operating under the "biopsy as the gold standard of diagnosis" methodology, this way of thinking is quickly becoming outdated as the experts are starting to realize that the blood tests are more indicative of what is going on, and that positive dietary response is the best diagnostic tool of all. Also, they make a pretty penny off of those surgical procedures.

My Dr. told me when my blood work came back positive, that there was no reason to put me through the biopsy. IF the blood work was negative and they still suspected Celiac, now there would be a reason to CONSIDER getting the biopsy, BUT, it's so much easier, less costly and non invasive to simply try the gluten-free diet and see if your symptoms improve. If they do then viola! you have your answer. Since you already have positive bloodwork, you do not need to do the biopsy to confirm it. Once you do the diet 100% and stick with it, you will feel so much better and will have no doubts... at least that's what happened with me. Within a few weeks I started feeling much much better, and a bonus for me, I've lost over 100 pounds since my dx 3 1/2 years ago.

[gfp]

I can understand your confusion. Many Dr.s are still operating under the "biopsy as the gold standard of diagnosis" methodology, this way of thinking is quickly becoming outdated as the experts are starting to realize that the blood tests are more indicative of what is going on, and that positive dietary response is the best diagnostic tool of all. Also, they make a pretty penny off of those surgical procedures.

My Dr. told me when my blood work came back positive, that there was no reason to put me through the biopsy. IF the blood work was negative and they still suspected Celiac, now there would be a reason to CONSIDER getting the biopsy, BUT, it's so much easier, less costly and non invasive to simply try the gluten-free diet and see if your symptoms improve. If they do then viola! you have your answer. Since you already have positive bloodwork, you do not need to do the biopsy to confirm it. Once you do the diet 100% and stick with it, you will feel so much better and will have no doubts... at least that's what happened with me. Within a few weeks I started feeling much much better, and a bonus for me, I've lost over 100 pounds since my dx 3 1/2 years ago.

I quoted because i wanted to add to this... I agree 100% with nini.

What you have to consider is if the biopsy would be negative ?

You have +ve blood work but what exactly would a -ve biopsy mean to you.

IMHO if you have +ve bloodwork and keep eating gluten sooner or later you will have villi damage but why deliberatly damage them? Some people say you don't have "real celiac" until you have villi damage personally I think anyone who sets out to deliberatly and systematically damage one of the bodies organs so they can say they have "real celiac" has a screw loose. (If they realise this)

There are valid reasons for biopsy, insurance or checking for other damage but as a diagnostic its too late... it only detects after the damage is done.

[floridanative]

The GI that did my biopsy did not take but two samples....found out after the fact that 6-8 are needed when looking for Celiac evidence. This guy called up to say I had it (luckily both areas were damaged and badly at that) and then he actually told me that he hated to prescribe the gluten-free diet to me since I don't have GI issues, just anemia..............whaa??!! Of course then I knew he was my EX doctor and went gluten free that night. But I should add that this was the very same guy that dx'd nini. So he didn't know as much as we thought he did.

[BostonCeliac]

I would seriously SWITCH to another doctor. I would so some research and find one experienced in celiac if I were you. Endoscopy will make a nice buck for your doctor. You know you're a celiac now so just get gluten free and get on with your life. It's curable. No gluten. Ever. Why even go to any more doctors or back to this uninformed GI?

KISS method.

Diana

Mayflowers -- yes, a celiac specialist would be great, but there seems to be about 3 of them in the US -- my sister looked for a while & couldn't even get an appt. with one in NY, and I checked out the entire GI unit at MGH, and there are no specialists... Nutrition specialists we have found, but not DRs... I'm thinking now I may cancel the endo...... esp. after all these comments!!!

Nini -- Thanks for your advice, would love to drop some lbs! (as well as drop the ab pain, anemia, etc etc). The doc really wasn't pushing the endo, which I thought was weird at first (due to the insistence of my sisters doc), but now see he was just leaving it up to me...

gfp -- what if it's negative?! then i'll be pissed... because I'll still be convinced I have it.

[happygirl]

i had positive bloodwork, was TOLD by my 1st (i'm now onto #3) idiot GI to START the gluten-free diet BEFORE the procedure (which, I know now is incorrect). Magically, my biopsy came back negative. Due to the positive bloodwork and positive dietary response, he agreed that I probably had Celiac. I have been gluten free ever since. So the biopsy doesn't necessarily mean as much as we all hope that it would. You will unfortunately find that you already know more about Celiac than most docs out there. I have had to correct them in their information....if you do, make sure you have sources to back it up . Then they shut up.

No matter what happens, after the biopsy, it would be worth it to go gluten free. And we will be here to help. Best of luck.

[megzmc3611]

I know you waited a long time to get in with this GI, but maybe you should consider goint to Beth Israel and meeting with a GI there? They have a celiac research center! I personally see a GI at Newton-Wellesley who is great, but I went to the Beth Israel Celiac Research Center for a celiac study in the beginning of the summer. I met with the nutritionist Melinda Dennis (you may have heard of her) and a couple of interns. They really know their stuff there!

I found this website Open Original Shared Link

At least if you can try to get in here, you know they will know how to spell "celiac"!

[BostonCeliac]

I know you waited a long time to get in with this GI, but maybe you should consider goint to Beth Israel and meeting with a GI there? They have a celiac research center! I personally see a GI at Newton-Wellesley who is great, but I went to the Beth Israel Celiac Research Center for a celiac study in the beginning of the summer. I met with the nutritionist Melinda Dennis (you may have heard of her) and a couple of interns. They really know their stuff there!

I found this website Open Original Shared Link

At least if you can try to get in here, you know they will know how to spell "celiac"!

Megzmc -- Thanks! I had no idea that was there.. now I'm pissed that I went through all of this with MGH! I wonder if I can meet with that nutrionist you mentioned? Does your insurance pay for that?? Do you just give her a call for an appointment? I really wish I did a little more research, unfortunately my primary care doc is affiliated with MGH - which is how I got set up there. Anyway thanks again!

[megzmc3611]

Megzmc -- Thanks! I had no idea that was there.. now I'm pissed that I went through all of this with MGH! I wonder if I can meet with that nutrionist you mentioned? Does your insurance pay for that?? Do you just give her a call for an appointment? I really wish I did a little more research, unfortunately my primary care doc is affiliated with MGH - which is how I got set up there. Anyway thanks again!

Somehow they contacted me to participate in a celiac research study (I can't recall how they got my name).... So really I went for the study and not for medical reasons.

If you go to that website, click on "our celiac disease center team". It gives you a list of all the doctors. I think Daniel Leffler, MD is the head of the GI. Maybe you can just call that phone number next to his name and try to get in for an appointment (with him or one of the other GI's). Once you get in with him, I am sure he can write you a referral to see Melinda Dennis (she is great and soooooooo nice!). She teaches a lot of classes in the area as well, at Whole Foods and some other locations. If you go to www.deletethewheat.com, the site lists any of her upcoming classes (she updates it every couple of months, so if there are not any new classes listed, keep checking in). Hope this helps! Good luck!

[happygirl]

"Celiac" is the common American spelling; "Coeliac" is a more common European spelling. Although you see it used interchangably, even by America drs.

[par18]

I have it and my biopsy was negative.

Debbie,

I admire your honesty. When reading all the posts on this thread one thing keeps coming to mind. The money for the medical profession in Celiac is in the "diagnosis" not the treatment. Whether it is via blood test , biopsy, or positive response to diet the treatment is still the same. The longer one goes untreated the more money can be made until the final decision by the doctor or the patient that the gluten-free diet is the only thing left to do. If a person truly has Celiac Disease then it just becomes a battle of opinions and wills and money as to when it is finally accepted.

Tom

[Guest nini]

The GI that did my biopsy did not take but two samples....found out after the fact that 6-8 are needed when looking for Celiac evidence. This guy called up to say I had it (luckily both areas were damaged and badly at that) and then he actually told me that he hated to prescribe the gluten-free diet to me since I don't have GI issues, just anemia..............whaa??!! Of course then I knew he was my EX doctor and went gluten free that night. But I should add that this was the very same guy that dx'd nini. So he didn't know as much as we thought he did.

OMG! I about spit my drink out my nose!

You are right Tiff. He didn't know as much as we thought he did, but he did at least recognize Celiac in me... enough to put me on the diet and the path to wellness.

I truly believe that we as the patient have to be our own best advocate. We have to do our own research and form our own opinions, and try to find a Dr. that we can be a partner with in our health care. As a culture we have been conditioned to think that Dr.s are the be all, end all experts on everything, but they are not. They are imperfect human beings just like the rest of us and they don't know everything.

I will admit that my opposition to the biopsy stems more from my contempt for most of the medical profession because of their lack of common sense. I am also in the alternative health care field so that is another reason I am not a big proponent of medical procedures (unless they are very necessary) And I'm a huge proponent of nutrition and diet to cure what ails ya. (just wanted to make sure y'all understand where I'm coming from) So, that being said, I don't think I'm EVER going to recommend that anyone get the biopsy...

[gfp]

gfp -- what if it's negative?! then i'll be pissed... because I'll still be convinced I have it.

Then I think you have your answer.

I agree, your blood tests are positive ... if the biopsy is negative then you just cast doubts as to sampling, expertise and in your own mind.

I don't think a well sampled and interpreted test is going to be... but why put yourself through it and eating gluten for weeks just to get this extra cert.

Your options are go gluten-free now or not.... because the biopsy is part of not.

If you want a extra level of proof then go 100% gluten-free.... no eating outside the house and nothing you even think has the slightest chance of being gluten-free... sooner or later you slip-up and you have a reaction, even if your asymptomatic you will notice after 3 months of being gluten-free. Think about it like a smoker who quits for 3 months... if they have a cig after 3 months they will really notice! You might feel asymptomatic but chances are you will have some different feeling .. but the major part is you are getting better while doing this test whereas the aim of the biopsy is to actually damage yourself to the point where it can be seen.