Properly Arming Myself

[Adalaide]

I have another appointment with my doctor in about 2 1/2 weeks. I've been working on a full list of symptoms (which is about a full page already), a list of what I think I should be tested for, and a list of questions to ask. I'll continue to add to all of it as things come to mind. Other than this, does anyone have any recommendations of what I need to be armed with before I go? I already have the iron will I'll need to put my foot down and say you will test me for this, period.

[IrishHeart]

Sounds like you've got your bases covered.

Did you store all this info you complied on the computer? I would.

Also, have a list of your supps, vitamins, meds ready.

Keep a running file on your computer so you do not have to do this every single time.

And makes notes WHILE you are there and add those to your file later.

Do not leave until all your questions are answered.

Request copies of all test results.

Which doctor is this you are seeing??

oh,...besides iron and B-12, ask for a FOLATE test. They always do the B-12 but forget the FOLATE. (That was the one that I had to figure out)

[Bubba's Mom]

I'm a list maker. Try to keep it simple though. Many Dr.s see you whip out a list and get nervous. Be aware that they are probably allowing 15 minutes for your visit.

List your meds/supplements, List your symptoms, have your questions ready. Make it simple to scan and evaluate. Add notes as needed.

Be sure they address your concerns. With some Dr.s you have to be a little pushy, and others appreciate seeing your info gathered so they can easily see the whole picture and do what's needed.

I carry a file with copies of test results, so if they ask me something and I don't recall, I can easily find it. You may not have a file, but it's a very good idea to start one. Ask for copies of all test results.

Good luck!

[Adalaide]

I'm just going to my PCP. My insurance makes it a nightmare to attempt to see a specialist, which usually results in being turned down. I also am not a fan of being treated like an intestine so I'll probably never seek an appointment with a GI.

I was planning on going down to the hospital this coming week and getting a copy of all my records from my stay there, which includes my biopsy and a LOT of bloodwork. Keeping a file is probably a good idea, even if I see the same doctor most of the time I may know how to find info faster than they can. I already keep a file handy whenever I'm out of the house to take shopping and in case I stop to eat.

I did tell them to plan on a 30 minute rather than 15 minute visit and I will take all the time I need. I once waited in an exam room while another patient took over an hour with the doctor, after that I don't feel bad at all taking all the time I need with him.

[mushroom]

I hate to be a wet rag here. Yes, you should plan out how you want your appointment to go. But you must also have a backup plan, in case your plan is totally thrown off kilter by your doctor's plan and you need to change horses in the middle of the stream. You have to be flexible in managing the appointment because doctors never do what you want them to do and will always try to divert you into whatever they perceive as being the proper channel. You 1) need a strategy to divert it back to the proper course, or 2) need to have an alternative method of attack. Sometimes even this does not work and then you need 3) something to throw a spanner into their works, like some information you have not previously presented or an argument that you perceive they cannot counter-attack. And sometimes you just have to just give up in exasperation and say, this is not the doctor for me

My personal experience has been that it is better not to confront them with the list right up front - they feel too threatened by it. Try to memorize your list, and then if you get stuck you can pull it out and say, let's see, what else did I have to tell you or have questions about. Doctors do not like to feel threatened, and as I found out this week, they do not like to feel disempowered or inadequate or unable to offer you the services you really need. But that's another story.....

[IrishHeart]

I hate to be a wet rag here. Yes, you should plan out how you want your appointment to go. But you must also have a backup plan, in case your plan is totally thrown off kilter by your doctor's plan and you need to change horses in the middle of the stream. You have to be flexible in managing the appointment because doctors never do what you want them to do and will always try to divert you into whatever they perceive as being the proper channel. Doctors do not like to feel threatened, and as I found out this week, they do not like to feel disempowered or inadequate or unable to offer you the services you really need. But that's another story.....

True, true, and when I suggested she be prepared, I did not mean she be confrontational. Not at all. That gets you nowhere. Their egos cannot stand that. For example, there was the rheumy I questioned once back in 2009 who nearly took my head off and screamed at me "How dare you question my 35 years of experience?" (Well, when you are telling me to take methotrexate and steroid shots when I do not even have RA, I ask why!)

I just find that having the things I want to say/ask printed out for me to refer to is helpful.

I spent 3 years going from office to office and never getting answers or help and I never go in to see my doctor now without some sort of backup notes (a cheat sheet, so to speak).

I am fortunate that my GI doc NOW encourages me to ask him anything and even (gasp!) call him with questions --and he actually calls me back!! amazing, yes??! --and he encourages me to bring him articles, etc. for his other patients to read.

I know, he's a "keeper".

[Adalaide]

The last thing I want to do is anger the man I let believe is in charge of my medical care. I'm a very non-confrontational person. I'm quite fortunate that my doctor encourages me to educate myself, come prepared and ask him anything at all. I even get call backs too! Who knew there was more than one doctor in the whole world who does that?

I've even been told that if I discover a reliable source of information or a resource he hasn't told me about to let him know so he can check it out and pass it on to other patients.

I don't know how I got this incredibly lucky. Great tips for me that I much appreciate. Especially making sure I let the doctor think he's the one in charge and the one with the answers. I imagine with as much education as a doctor has that it's terribly frustrating and difficult not to have all the answers.

[IrishHeart]

I imagine with as much education as a doctor has that it's terribly frustrating and difficult not to have all the answers.

My primary care doc was truly upset when he ran out of ideas and referrals for me during my odyssey. He told me we needed to "think outside the box" (so I tried a Naturopath to no avail) and then thought maybe I should go to the Mayo Clinic or Lahey in Boston. I was getting ready to go there when I figured it out myself and then had it confirmed.

I could see he was just dumbfounded and it bothered him that I was still suffering.

When I returned to him and told him "I know now--it's celiac"...he looked stunned and turned pale. He fumbled with my chart and read page upon page and I swear, a light bulb went on over his head.

This is the nice guy who had treated me for a B-12 deficiency, anxiety that came out of nowhere, gave me pain meds for the joint pain and sent me to a rheumy, witnessed a drastic weight loss (but congratulated me for losing weight ) , gave me synthroid (I did not need) for erratic thyroid panels, had me wear a holter monitor for heart palps, do a sleep study for insomnia, sent me to neurologists for EMGs for nerve pain, gastros for gut pain and bowel issues, etc. etc. --in essence, he symptom-treated me for years--but never wondered WHY all of it was going on!

The kicker? His own children have celiac !!! yet he did not put all my various symptoms together and see it in me until that moment. He said quietly, "I did not know it could manifest that way in adults..." and because the celiac panel ordered (upon my insistence at yet ANOTHER office referral---the allergist's office) was negative, he had not considered it. HE was the one who then said to me "those blood tests are wrong too many times...." ya, they are doctor.

He has bent over backwards since then to help me recover, but my faith in him is shaken too much for me to be very comfortable. I probably need a new PC but I am not into doctor shopping at the moment. I tried a new PC a few years ago and she was worse than he was. She was so arrogant and dismissive. She told me to take an anti-depressant and come back in 6 months. That script went in the trash with all the others.

[Adalaide]

As I put my medical history I can remember to paper, I realize that much like you I've been treated for symptom after symptom my whole life. While not recalling a lot of the specifics (and the doctor I had as a child got run over 4 years ago) I remember enough to suddenly realize I've been chronically ill for as long as I can remember.

I had problems with my kidneys that sometimes left me in so much pain I couldn't walk. Solution? Cranberry juice and metamucil. I don't envy my mother trying to shove that crap down my throat. "But it's orange flavored." Yeah... orange flavored sand. Generally a few sips resulted in vomiting all over the kitchen floor, not sure how long my mom put up with that crap before telling the doctor no more. My bed wetting was also attributed to my kidney problems, although I have learned now that it can be related to gluten issues.

I had infections in my tonsils near constantly, I don't remember a time when I wasn't on some sort of antibiotic. Finally I had them out sometime during the school year when I was in 5th grade. It was shortly after this that I became very ill. I don't really remember any specifics other than having barium x-rays and spending a lot of time at the hospital. My mother can't remember what Dr. Quacky (which is what I not-so-affectionately call him) decided was wrong with me.

It was also during that time that I developed Raynaud's. Suddenly one winter on my first day out sledding the cold and wet seeping through my gloves and boots hurt so bad I was convinced I had gotten frostbite. Not seeing any damage that could be permanent I shrugged it off and assumed it was normal to outgrow such childish things as enjoying the snow. Until about two years ago it never occurred to me that it isn't normal for cold to cause so very much pain.

I've had occasional migraines and insomnia since I was about 18 or 19. The migraines are most definitely linked to hormone issues which I didn't discover until after I got an IUD. Yeah, increasingly common migraines and then suffering from one near constantly for 3 straight months and the doctor couldn't figure out what was wrong. I showed up one day and was like, it's my IUD, take it out. I felt better in a few weeks. I still get them occasionally but always at the same time of the month (like now, ugh) and all I can do is ride it out.

I'm sure I only remember the highlights of any issues I had when I was younger. I only remember things that were (at the time) extremely traumatic, or consistent enough that it was simply a way of life.

A week ago I was like wow, I am so incredibly lucky that I happened by chance to be biopsied after only three years of feeling like total crap. Suddenly I find myself wondering what is so wrong with doctors that I've been sick my entire life and even though I saw the same doctor for about 12 years as a child he never treated me as a whole person. I was always just no more than whatever symptom I walked in with that day. Any child who is sick every single day for more than a decade has something very seriously wrong with them. How could a doctor not realize that?

I can't say my faith in my doctor in particular has been shaken, but this simply confirms my long standing belief that doctor in general just don't get it and generally aren't worth the time and co-pay. Unfortunately I'm on medication that I can't just stop taking, so I need to see him to try to step it down. My intention is to be prescription free in the next month or two, I see no point in taking fibromyalgia medication that costs a fortune if it's likely my pain is related to what I eat.

[IrishHeart]

It is when we look at our own long history that so much of this makes sense, doesn't it?

As for fibro medications, I have never met a single person who said they helped one bit. The one who took Lyrica said she gained 80 lbs and blew up like a balloon and still had pain.

If you are getting relief, that's great!

The MT/PT I work with has suggested a gluten-free diet to her clients with fibro ( after meeting me and discussing inflammation from gluten ad nauseum ) and I gave her some info about a gluten-free diet for a handout. Every one of them has had relief from the pain they have suffered for years. Know what their doctors said ? It's just a fluke. A coincidence. Yeah, okay.

Several people on here were told they had FM and their symptoms resolved after a few years.

We can always hope!

Let us know how your visit goes! Best wishes to you.

[Adalaide]

Apparently all of my blood work is "normal" I'll be picking up a copy of the lab reports next time I'm near the doctor's office. The doctor spent a bit more than half an hour with me and answered all of my questions that I couldn't answer myself. He did admit that I probably know more about celiac in a month than he'll ever know. (Which I already knew, but it keeps him from giving me bad advice.) In a few weeks I'll be Lyrica free and by the end of 2 months I should be Wellbutrin free. Yay! I'm glad I got a chuckle out of him when he asked what symptoms I have, because I handed him a full page list. He did tell me that he asked me about some of the symptoms and gave me "the look." I was like I would have told you I get short of breath when I walk up a flight of stairs but I've always assumed it's because I'm a fatty who needs to lay off the Krispy Kreme and go for a walk. There are some things I just never thought of as wrong with me but apparently aren't normal. In the end, my goal was met. I have a plan to be free of my medications safely and got the tests I felt I needed.

I also picked up my medical records from the hospital. When she asked which ones I wanted I said "all of them" and she kind of looked at me funny. My endoscopy and pathology reports say that I've got some messed up villi that's consistent with celiac but the only way to definitively diagnose is with genetic testing. I'm really glad I didn't waste my time and money going back to follow up with that guy. I'm pretty sure the treatment is the same with or without genetic testing, what a moron.

[IrishHeart]

Apparently all of my blood work is "normal" I'll be picking up a copy of the lab reports next time I'm near the doctor's office. The doctor spent a bit more than half an hour with me and answered all of my questions that I couldn't answer myself. He did admit that I probably know more about celiac in a month than he'll ever know. (Which I already knew, but it keeps him from giving me bad advice.) In a few weeks I'll be Lyrica free and by the end of 2 months I should be Wellbutrin free. Yay! I'm glad I got a chuckle out of him when he asked what symptoms I have, because I handed him a full page list. He did tell me that he asked me about some of the symptoms and gave me "the look." I was like I would have told you I get short of breath when I walk up a flight of stairs but I've always assumed it's because I'm a fatty who needs to lay off the Krispy Kreme and go for a walk. There are some things I just never thought of as wrong with me but apparently aren't normal. In the end, my goal was met. I have a plan to be free of my medications safely and got the tests I felt I needed.

I also picked up my medical records from the hospital. When she asked which ones I wanted I said "all of them" and she kind of looked at me funny. My endoscopy and pathology reports say that I've got some messed up villi that's consistent with celiac but the only way to definitively diagnose is with genetic testing. I'm really glad I didn't waste my time and money going back to follow up with that guy. I'm pretty sure the treatment is the same with or without genetic testing, what a moron.

"Villi consistent with celiac"---sounds like a DX to me.

I just had my follow up with my new celiac-savvy GI. He is appalled by what I tell him about the Celiacs and NCGIs on here and their experiences with doctors.

He is appalled by what happened to me.

He said he looks forward to our chats because he learns more about celiac from me than he would have ever learned from a book or in med school or in his practice. I AM the textbook celiac, he says. Yet, I went unDXed for probably 25 years.

He said there are more celiac genes at work than we think. He biopsied a guy with a NEG blood panel and neither DQ2 or DQ8 genes.

Totally. flat. villi.

You are right---the treatment is the same.

"normal" blood work is a very good thing.