I've Been To 15-20 Doctors!

[danikali]

Well, I am just letting everyone know, I am OFFICIALLY done with doctors and the whole thing after today.

I've been to so many doctors, and not only do they not do anything for me when I see them, or they act like all my problems stem from stress and IBS.

Last night, I had an apt. to see a NEW GI. Well, I took of work and so did my fiance, only to find out they booked me for the wrong doctor who isn't even a GI. So now I have to take off work again for the right doctor!

The time before that, I was going to my GP and I was REALLY SICK HAVING A HUGE FLARE UP AT THE TIME AND TOOK OFF OF WORK, THE WHOLE DAY FOR IT. WEll, about a half hour before, the assistant called to tell me that the doc. needed to reschedule because of an emergancy. I said, I'm sick and I can't keep taking off of work, can I see another doc? Well, she told me to just come in. So then I go in to the doctor's office, everything is feeling rushed, I want to just collapse, and the doctors comes in and says, " we only have 15 minutes because you're late!"

I just starting crying and said, YOU CANCELLED MY APT.! I'M LATE BECAUSE THEY TOLD ME NOT TO COME IN, AND WHEN THEY DID, IT WAS A HALF HOUR AFTER I WAS SUPPOSED TO BE HERE! She felt bad because I cried, but kicked me out early anyway, told me to get alieve and make another apt. to talk more.......

Then! I had another apt. with a rheum. and I again, left work early........got there.......and they said "oh, your doctor left! Sorry, we forgot to call you. You can reschedule though!"

Okay, I know I'm complaing a lot right now, but does anyone else have these problems? I live in NYC, with NYU doctors and other ones who are supposed to be the "best in the world" and here I am running around them!

I really just want to quit all together.

Any advice?!?!?

[Jenn2005]

Don't give up. I know its frustrating but it will get better. My husband has been sick for months and we were going thru the same thing as you going from doctor to doctor and test to test. He had a positive biopsy and we ended up doing the Entrolab testing also. I beleive I read you were doing the Entrolab testing too so when you get that back at least you'll have some answers. Good luck with finding a good doctor. Where do you live maybe someone can suggest a good doctor you could try.

Jennifer

[danikali]

Thank you.

I live in NYC, Manhattan actually so you would think I would find at least one good doctor. But then again, I guess there are so many doctors out here, it's hard to find the "needles in the haystack."

I actually am going through enterolab. They just picked "it" up last night........and if I do get any little answer from that, I'LL BE HAPPY and that will be enough proof for me to move on.

The doctor I saw yesterday (even though she wasn't a GI) did agree that Celiac is a STRONG possibility, but then again, she's not the one I'll be working with from today on. My apt. is at 2:00. I just want to get this whole over and done with. It's hard to concentrate on anything else these past few months (especially since I'm living on gluten!)

[Guest DanceswithWolves]

Doctors love to herd us like cattle. We are "customers" to them...nothing more. They throw pills at us and leave the rest up to us.

I would suggest that you do some research on your own and save the money. Get some digestive enzymes at a nutrional store.

I was told the same thing, that I have IBS. I was also told I have Gilbert's Syndrome. I had to look it up for myself.

I strongly believe that we as a society are getting sicker and sicker. The preservatives and additives in our foods are creating more and more gluten-intolerant and celiac people. Doctors want us to stay sick. The huge Pharma co's have much at stake. I would like to seriously see how many prescriptions are written every day in this country. I bet it's a min. of 50,000.

[danikali]

I know exactly what you're saying. It's just wrong and maybe I'm too naive and trusting, but I keep thinking I'll find a doctor who actually cares.

Anyway, I tried digestive enzymes like papaya and something else....

And I've been to a lot of health food stores for vitamens and acidopholis and cleansers, etc. They work for a while but then stop just like everything else.

I think I'm just getting really cranky these days because I'm eating a lot of gluten to get accurate test results, and my mood goes up and down and up and down.......

I really just want to go back to gluten free!

[darkangel]

If I lived in Manhattan, I'd love to see Dr. Leo Galland. An integrative medicine physician's gonna listen to you and try to get to the source of your problem, not rely on drugs to suppress symptoms.

I've been thru six different GIs here locally and none of them has been very helpful. You have to do your own research and experimentation, but once you're in crisis mode, you really need a doctor's guidance. And for those of us who don't live in major metropolitan areas, we have to branch out in our search for a doctor who "gets it." I'm currently looking closely at Dr. Dahlman's work out of Cincinnati. Everything he says resonates with my gut feelings of what's going on with my body. If necessary, I'll save up my money and go the phone consultation route.

[Guest nini]

I hope this last Dr. actually cares. I know what you are going through because I was going through the exact same thing... however, I lucked out with the GI I finally ended up with. I love him. The man saved my life. He recognized Celiac immediately. I don't have a lot of confidence in the medical community, but I love Dr. Eugene Hirsh in Atlanta.

[danikali]

Well, I just got back from the doctor's office. (no, Danny couldn't make it today, I WISH he did)........anyway, it's funny because I really knew what I was talking about when I went in there!

I told her I suspected Celiac, and told her I got a diagnosis of IBS before, but with no tests except an upper GI where you drink the stuff and they take pictures from outside of your body.

Anyway, I gave her a huge list of my symptoms, told her my history, and everything!

Then she started going into this whole spiel about IBS and how it takes "some getting used to." Then I stopped her in the middle of her lecture and said, okay, did you read my symptoms? Joint pains and bone pains have NOTHING to do with IBS, right? Getting a huge flare up of something where I can barley walk from the bed to the sofa has nothing to do with IBS! I don't have IBS, there is something else going on!

Then she said, yes, you're right, and stopped going on about IBS. Then I told her how my symptoms fall somewhere between a gastrointestinal problem and a autoimmune problem, and after researching extensively by myself, I have learned that Celiac makes the most sense. I also told her how after I eat pasta or cookies or anything like that, I get gas and diarreha and that has been happening everyday since I've been back on gluten.

Then she said, Celiac Disease is not common at all. And I said, "actually, I've been learning it's a lot more common than doctors think!" She just laughed at that.

Anyway, I'm getting blood taken this Sat. Do you know what these tests are exactly? (besides the celiac)

-Comprehensive metabolic panel

-CBS w/Diff

-ESR, Westergren

-PT

-PTT(aPTT)

-Celiac Ab panel

Also, do you know what the Ab in panel means? Is that the regular celiac panel?

Anyway, I know she doesn't believe my problems have anything to do with gluten, but at least I'm getting my tests done!

I'm also going for a colonoscopy on a week from Monday.........I kind of feel like that is worthless, but we'll see.

-Danielle

[Nemi555]

-Comprehensive metabolic panel

-CBS w/Diff

-ESR, Westergren

-PT

-PTT(aPTT)

-Celiac Ab panel

-Danielle

<{POST_SNAPBACK}>

I don't know what all the tests are but I just wanted to wish you luck and I hope that they come up with some good answers for you. Give yourself a pat on the back for standing up to that doc who droned on about IBS!

Cathy

[celiac3270]

Go to a GI at Columbia Presbyterian; I also live in NYC--they have a Celiac Center.

[ravenwoodglass]

I'm also going for a colonoscopy on a week from Monday.........I kind of feel like that is worthless, but we'll see.

-Danielle

<{POST_SNAPBACK}>

Why do doctor do this? She should be doing an endo first not a colo. (my opinion because of 5 extra years of suffering after being told the colonoscopy showed nothing it's IBS live with it and have a prozac) Call the office and ask, firmly, that they do an endoscopy with lots of biopsies at the same time. If they can't do both try and get the endo first.

[julie5914]

Ok, I have lots to say on this one. First of all, I'm so sorry - our health care in the allopathic (traditional) medicine arena is in serious need of reform. Pharmaceuticals and insurance has taken over, and many MDs seem to have forgotten what led them to go to med school to begin with (unless it was $$$, in which case they are right on track I s'pose).

I got the IBS run-around for years, including getting the baggies of pills, one of them Zoloft, which I promptly threw in the trash. I don't know what your other tests are, but the celiac panel will *hopefully* either include the EMA or Ttg test or both. If they are just IGA and IGG, they are not very good. If I were you I would cancel colonoscopy until you get those results back. I would not push to schedule endoscopy till you get those results back either.

Have you had an ANA test to look for rhumatic diseases? The aches and pains are just as likely celiac, but it would be good to rule out.

My personal advice, stemming from my own experience, is that it's a coin toss as to whether you're gonna get a good doctor or not, esp. in terms of their understanding of celiac. I cannot believe that doctor laughed at you. It has been all over the press about the underdiagnosis of celiac since the National Institute of Health had a conference a while back on it. SO, I would either do what celiac3270 suggested and go to the Celiac center or find an osteopathic doctor. Most of them don't allow drug marketing and don't deal with insurance.

Osteopaths look at the body as a whole and do not specialize in one area alone. Celiac isn't just a GI problem. They also do not pass blanket judgment on patients (not that all MDs do this, but it seems to be a problem with the IBS thing) and will investigate to find out what is wrong. Mine asked for my entire medical record and had me fill out a huge questionairre before she would see me. She had reviewed it all before she saw me and then spent an hour with me. It cost $300, the same amount you might pay for your first visit to a MD that will have you waiting for 2 hours and only see you 15 min. I have a PPO, so I was reimbursed 70% of that. The follow-up visits are 30 minutes at $75, the same amount I would pay for 10 min with a GI that just asks how I'm doing, take notes and then it's done.

I had lost faith in doctors till I met my DO. It is still weird to me because it so unlike a regular doc office, but I drive almost 2 hours to see her because she is worth it.

[darkangel]

Then she said, Celiac Disease is not common at all.    And I said, "actually, I've been learning it's a lot more common than doctors think!" She just laughed at that.

<{POST_SNAPBACK}>

Time to find another doctor.

[danikali]

Thank you everyone for replying!!!!

YEs! I am cancelling this colonoscopy! I know it will be a waste of my time!

I hate how she didn't listen to me! I told her I WANT THE FULL CELIAC PANEL, EVERYTHING THAT GOES WITH IT. I think she is only doing one or two tests for it!!!

okay, so it says celiac "ab" panel? anyone know what that means? should I scratch the "ab" out so it just says celiac panel??? help quick! I'm going in like one half hour to get the tests taken!

And I think I will try Columbia because I am hearing now from a lot of people they know what they are doing........hmmmmmmmm

I'm so glad you guys know what I'm talking about!

And yes, I had an ANA test, two of them, very positive..............but I tested for numerous other rheumatological diseases and everything else came back negative? And suggestions? Could positive ANA mean Celiac? I was never tested for it.........the rheum said that was the GI job!

Anyway, I'm achy, and sicker everyday eating this crappy gluten! I really just want to get this blood test over with and start my new life?

THANK GOD I ALSO WENT THROUGH ENTEROLAB, huh? AT LEAST THEY WILL LOOK AT MY "CRAP" believing I at least MAY have it!!!!!!!!!! Actually, I know I do! Hahah, what am I doing with these dumb doctors!?!?!

Any "quick" replys?

[floridanative]

My tests say Celiac ab too so that must be what it's called. Mine included six tests.

[danikali]

My tests say Celiac ab too so that must be what it's called. Mine included six tests.

<{POST_SNAPBACK}>

Ohhhhh good good good! Thank you!

[bmorrow]

I would not cancel the colonoscopy. There are other conditions that you might have that go along with Celiac. For example, I have microscopic colitis and that is diagnosed with a biopsy of your colon. The doctor could do both scopes at the same time.

Good luck with your search for a good doctor and finding your diagnosis.

[ravenwoodglass]

THANK GOD I ALSO WENT THROUGH ENTEROLAB, huh? AT LEAST THEY WILL LOOK AT MY "CRAP"    believing I at least MAY have it!!!!!!!!!! Actually, I know I do! Hahah, what am I doing with these dumb doctors!?!?!

Any "quick" replys?

<{POST_SNAPBACK}>

You know your bodies reaction to gluten better than any doctor does. It makes me so sad to see people who are making themselves sick, knowlingly, so that these doctors can feel like they 'proved' something. Enterolab was a smart move, have you gotten the tests yet and sent them in? If you have then get yourself gluten-free soon, you already know it will help you feel better, how much more proof do you need? Also some have mentioned possible problems with getting insurance if you have an 'official' diagnosis. Don't know why this would be when this is a diet relieved genetic difference except that we are often undiagnosed for so long that it can lead to more serious problems. Hope you get some relief soon.

[debmidge]

Dani, we've had same experiences here in NJ. Take celiac3270's advice he's "in the know" about this stuff. We had 25+ years of this poop from doctors who were NOT in HMOs, so insurance wasn't the issue, in the end, it was a $25. per visit HMO GI who diagnosed my husband properly.

[danikali]

Thanks for your replys!

I sent my enterolab in last Wednesday, that is, they picked it up Wednesday night after work. So I'm thinking I should get the results like the first week in December. Also, I had my blood tests this morning, so today is my first day GLUTEN-FREE. It feels good. I already have more energy and the gas and bloating are gone!

Now I have a question. How many shampoos and conditioners and soap out there acutally have gluten in them? I checked all of my products last night and didn't see anything in the ingrediants that might suggest gluten. But could they all be hidden? I went to the store to look for organic products and ALL of those had things in it like wheat, oats, and barley extract. Hmmm.....

Anyway, I also have a question about turkey and stuffing. I talked to my soon-to-be mother in-law this weekend and told her about all of the new gluten info. I am finding out and how I need there to be NO gluten at all, or touching my food. She said that she was cooking the turkey with stuffing in it, but I can just eat the outside. Is this safe?

Anyway, I know this is all off track, but thanks for any help!

-Dani

[Guest nini]

Thanks for your replys!

Anyway, I also have a question about turkey and stuffing. I talked to my soon-to-be mother in-law this weekend and told her about all of the new gluten info. I am finding out and how I need there to be NO gluten at all, or touching my food. She said that she was cooking the turkey with stuffing in it, but I can just eat the outside. Is this safe? 

Anyway, I know this is all off track, but thanks for any help! 

-Dani

<{POST_SNAPBACK}>

Absolutely NOT. NOT SAFE. Cook the turkey separate from the stuffing. Also, you can make a cornbread stuffing that is delicious that the whole family will love. I will gladly send you the recipe if you like. nisla@comcast.net

[danikali]

Thank you so much!!

[danikali]

Thank you so much!!

<{POST_SNAPBACK}>

And I forgot to put a subject in my e-mail, but I e-mailed you nini!

[Guest nini]

got it and replied!