I finally got in to see a GI last Tuesday. I guess it went alright, but I went home feeling kind of set off by some of the things this doctor said to me.

In the appoinment I explained all of my symptoms, that my grandmother has celiac, and that when I tried going gluten free for three weeks, ALL of the symptoms went away.

I went through the exam and then he started talking about this and that... he said celiac is not really hereditary, so just because my grandma has it doesn't mean anything at all, basically. And granted, just because a family member has it doesn't mean I will get it, yeah true, but he made it seem like it was not a possibility at ALL, which contradicts every bit of reading I've done on celiac. I explained that my symptoms were extremely similar to my grandma's, and that's why we (my family and I) began to suspect it in the first place. He more or less shrugged it off.

One of the symptoms I'd described was ongoing depression. At one point during the consultation, he said that anti-depressants could both alleviate the depression AND bowel symptoms. He also said something along the lines of the diet is too hard to pursue without an actual diagnosis. I nearly told him that I'd go gluten-free after the endoscopy no matter WHAT the diagnosis was, but I got the feeling that he really wouldn't respect that at all. He also brought up that it "could just be IBS".

Something about that appointment just rubbed me the wrong way. I understand that there are other possibilities and I'm GLAD to be checking out all of them just to make sure I get the proper treatment in the end. But he didn't seem to respect my opinions and feelings at all.

Well, I went back home and continued eating (more) gluten again, at this doctor's request, so that the biopsy results could be conclusive. This week my health has gotten progressively worse, and all my symptoms have come back. My "brain fog" is so bad I can't even drive. I'm 20 years old, so that's kind of a problem. My dad, having seen me both on gluten and off recognizes that gluten is at least a part of the problem and was getting pretty concerned about my health. He made a phone call to the GI yesterday to voice his concerns and see if nothing else could be done in the meantime so that I can, well, live life.

My dad says the phone call was just a couple minutes long. The doctor told him he couldn't tell him much because they didn't have my permission, which is ridiculous, considering that I SIGNED a form giving the clinic permission to release information to both my mom and dad.

The doctor then called me and said "your dad is concerned and says that you can't function." It seemed a little sarcastic to me. I told the doctor he could have talked to my dad, I HAD signed paperwork releasing info to him. He talked about the symptoms my dad had listed, such as sleep, inability to drive, stomach pain, etc. I confirmed that, saying my mind was too fuzzy to concentrate and I'd been sleeping for 12 hours a night and still feeling exhausted, etc. He said that I might consider calling my regular doctor about the sleep problems and getting on medication for that. I explained that when I was not eating gluten, I slept 8 hours a night and had LOADS of energy. Nevermind that I explained all this to him in the first appointment. How dare I come up with my own reasons for taking charge of my health? Grrrr...

His advice? Apparently I can "stop eating gluten until the tests, there should be enough damage if it's there", but in the meantime, if I DO eat gluten and start throwing up, I should head to the emergency room.

My dad came home from work pretty upset. I get a bad feeling from this GI, but I can't really put my finger on why. Well, probably because I don't think he respects me. My dad feels the same way, so I guess it's not just me.

My biopsy is scheduled for a week from Wednesday. I'm not entirely sure I want to go through with it, but it's the soonest thing I've got. In any case, after the biopsy I'm getting a new GI. This guy is not working out...

Not hereditary? Really? The NIH (one of his peer groups) recommends testing all first degree relatives. I don't know if continuing with him is going to be worth much. He doesn't sound capable of giving you the correct information about your situation. Do you have any confidence that he will be able to accurately interpret your test results? Biopsies results can be skewed by the reviewers opinions . And if he is unwilling to consider celiac given all you've told him already....Can you change now?

As a personal side note-I suffered from depression as well. But between going gluten-free and correctly supplementing what I was missing I've seen a complete lifting of symptoms. This doesn't happen for all of us but it is possible!

Take care and remember your doctor works for you!

Personal opinion here, may not mean a hill a'beans but..


SCREW the GI. You know your body & you know how you feel. Drop him & search for alternative health provider.

It took us 3 years to find a GI that will listen & pay attention. Our Steelioe is FINALLY able to go potty on his own w/out enemas or laxatives & his mood swings are SO much better. He's a happy little guy again!
Because we listened to him & paid attention. The GI we found said "Hi, tell me what's going on" and kept her mouth shut for 15 minutes while I explained Steele's symptoms. She examined him & got us on a knot buster to release his tiedup guts.

Trust yourself. Drop that GI. He does not have your best interest in mind.

Just my .02

Omg what a nightmare Dr.
At 1st, it seems right to go ahead w/ the biopsy, but I also wonder if he's so ignorant on the basics can he be trusted to properly do and interpret it?
Maybe it'd be worthwhile to see if u can get an appt soon w/ another GI - it'd be hard to find one that's worse!

I really don't understand why all these GI Dr's have to be such jerks. I fired my 2nd Dr. He wanted me to see a psychiatrist.It took me 4 months to get off the medication for anxiety and sleep as it was. Then when my allergist did the genetic testing which showed double DQ2 and explained this does not diagnos me but that it could well be a possiblity. I tried to show the GI Dr and he did not even want to look at the lab report. He did a biopsy after 3 months gluten free which showed back negative...of course. I just can't eat it long enough for a test. It is sad because some people won't get diagnosed until it may be too late around here. I went to the periodontist and the assistant found out she had it 4 years ago. Along with precancerous cells in her esophogeous. I have given up on an official diagnosis. You just have to do what your body says. My father died from esophogeal cancer and my mom has had inches cut out of her intestines from problems. I am not going to go through all that!Anyway...hang in there. I just hope someday that all these doctors get some up to date training on celiac. It would probably save alot of lives.

Good grief, what an ignorant, arrogant, idiot GI doctor! Are you sure you need an 'official' diagnosis? Your symptoms are awfully obvious, and your grandmother has celiac disease (and of course, it is hereditary). You really know it is celiac disease already. Why don't you save yourself the aggravation and just go back to being gluten-free?

The idea, wanting you to take an antidepressant and sleep medication, when a gluten-free diet will cure both problems! And IBS is a crap diagnosis anyway. Because irritated bowels are caused by something and are a symptom. Meaning, rather than medicating the symptoms, all those GIs would do well to learn to figure out the causes (too bad it would make the pharmaceutical companies unhappy if everybody would just change their diets instead of taking their meds).

I have never heard that anti-depressants can alleviate bowel problems. What this doctor is really saying here is, that it is all in your head, your bowel problems are psychosomatic (right, I've heard that one myself), and that is why he thinks that an antidepressant will fix you right up. This man is insulting you! What a jerk, if I was you, I'd never go back to him again, I'd fire him!

Your GI may well need a primer course of Personality 101, but his offering of an antidepressant for irritable bowel type SYMPTOMS may well have merit. Particularly if diarrhea is a major symptom, old time generic-available trazodone in the smallest dose available had been very helpful to patients. The majority of serotonin receptors in the body are in the intestine, not in the brain.If you need immediate help with this while you are waiting in the biopsy,I'd reconsider tha offer. I think the bigger point is that he seems incapable of processing your information you tried to give. Listening to patients takes more time than the average doc has.......being celiac unaware is a giant NO-NO for GI's in this day...too bad you got one who isn't sensitive to you. But he is NOT the one to read your pathology slides....that will be done by a pathologist. Ask to see the actual report so you can check for increased intraepithelial lymphocytes(a more subtle finding than villous atrophy).
Best of luck to you.

Hey guys, thanks for taking the time to reply.

The situation is that I kind of need an official diagnosis. I know I have celiac. My grandma knows I have celiac. My family and boyfriend all know I have it, too. The problem is, I'm going to be living in a sorority house next year and I need to have one in order to request special food from the cook. Our cook is pretty accomodating as it is, but I want to be able to bring in some of my own appliances and things of that nature without anyone objecting. The easiest way to do that is if I have something official that says I NEED these special services, and that if worse comes to worse I can move out of the house early. Not to mention other things, like the recruitment parties when you HAVE to eat whatever is served with the recruitees, bla, bla, bla. Simply saying I'm gluten free because of X and Y won't be good enough for situations like that. Girl politics at its finest, no?

So, my options are either get the biopsy in a week and a half as scheduled with dr. jerkface, or try to find another decent GI, schedule and appointment, and then schedule a biopsy. It's taken me a good 8 weeks just to get to this point with any GI anywhere in the area. I'm actually driving out of town to see this guy, because everywhere in town was booked for weeks after him. God only knows when I would be able to see another GI, and what are the odds that the new one would be any better? I'll need to stay on gluten the whole time, which will be a pain. I need to work and I'm really hoping to have most of the summer to recover before I go back to school in the fall.

Would the GI himself be looking under the microscope at the sample? Or would it be the lab technician? If it's the lab technician, than would it really matter how biased the GI is? What if I had them fax the lab results directly to my regular physician to double check? Or would an alternative practitioner be able to "officially" diagnose this?

Why waste your parents money on a doctor that does not know what he is talking about in the first place. I know that you need and want to get it over with and all but I just can't see giving that doctor any more time of money if he doesnt or can't listen to you. Man the never of that doctor, he needs to go back to school. My GI I don't think listened very well either, I think that he heard weeks not months. and Said if you have anything that I would want it to be IBS you can controll that with medicine. I told him NO that I'm not controlling my body with medicne I'll controll my body with food first, I don't think that he liked that too well.

Donna

Well, again, I'm not really sure what other options I've got at this point. I need the diagnosis, and it could take weeks to get an appointment for a biopsy with another doctor. Weeks that I would continue to have to be eating gluten. I've been talking it over with my dad, but he's still somewhat set on me having this biopsy. So is my mom. It's the closest thing we've got. My dad's the one who suggested having all the results sent directly over to my regular doc, but he's really starting to wonder if those results my be skewed to whatever the GI wants to see.

I mean, yeah. It's a crappy situation. I don't want to give him more of my money, but I don't want to wait another couple of months to get a biopsy from someone else, either.

I can see your point. And it is true, of course that GI is not going to be the one looking at the slides and interpreting what he sees.

He may well tell you there was no problem, though, even if there is damage. So, you need to demand a copy of the biopsy results, which you should then copy before giving it to your regular doctor (so you have a copy for yourself to keep). I am not sure that they would fax them to your doctor, though. Here in Canada they would not.

If everything else fails you can just go back to the gluten-free diet and be tested through Enterolab, if you can afford it. You don't need to be eating gluten for their results to be accurate.

The biopsy is soon, which is good. You are right that it would take too long to see somebody else at this point. Demand that the doctor take at least five to ten samples, because with less the chances of missing the damaged areas and getting a false negative is too high. And after you get the results, never see that GI again!

I can totally understand need to get something done, I know without a doubt that my blood and biopsy was a false negative. But if you feel so much better Gluten free, stay that until the test. It does not sound like you have been gluten-free for too long so hopefully everything comes back in you favor +

donna

Yeah, I know... Not hereditary, my butt! Actually, once I've found a decent GI, my younger sister plans to be tested as well. She has quite a few of the symptoms herself and is another one of those people that gets tested for everything and the doctor just tells her she's "fine". Now that I'm going through all the testing, she's starting to suspect she may have it as well. My dad's trying to talk my mom into getting tested, too, since it's her mom who's got celiac. My mom doesn't see any "symptoms" (we do!) and doesn't see the benefit of sticking to a diet when there aren't any symptoms for her to improve on. I have a feeling if she went gluten free, she'd notice a lot of stuff getting better that she didn't even realize was a problem. That happened to me.

As for depression, I'm not expecting this to be a magic cure-all. However, within a couple of weeks of being gluten free, I noticed I was much happier overall. It was like a complete reversal, and once I started eating gluten again, my depression has been gradually coming back. It's something I may need to work on even once I'm settled into the gluten free diet, but I think the majority of those issues are going to go away with gluten-free food and time. It boils down to the fact that I KNOW pills aren't going to fix this. Anti-depressants and sleeping aids have their place, but if I take them and expect the problems to go away without dealing with the actual cause of the problem, then I'm not much better off. I think it's such bullhockey that he won't even acknowledge that my symtoms *gasp* may have a legitimate cause.

In the US doctors fax stuff to each other all the time, so long as they have the patient's permission. My regular doctor did the original celiac panel and had those results faxed over to the GI. Prior to the biopsy, I have to do a couple of stool samples. Since his office is out of town, they told me to take the samples to a lab in my city, and that lab's been faxing over those results to the GI as well. It would make sense to assume that they could fax biopsy results to my regular doctor.

I'll definitely remind (and by that I mean demand- assertively) him to take a lot of samples. For all of this trouble, I don't want to have a false negative over something stupid like that.

You may be able to find a regular doctor who's willing to diagnose you on dietary response. That's what I did. If a GI had told me to keep eating gluten so he could do a biopsy, I would have told him to stuff it. Plus this one doesn't seem to know what he's talking about. Has he diagnosed anyone with celiac before? He sounds like the type to say "they said it was rare back in med school so there's no way you've got it".

Before we suspected celiac in my daughter, we'd been taking her to a naturopath who had written her an official order to be off gluten, and that was because DD has sensory issues and leaky gut - now we have an Enterolab test showing anti-gliadin IgA antibodies, but the order was written before we had that test done. I bet there are a lot of alternative health practitioners out there who would write you an order to be off gluten with your symptoms and history. And if you took copies of the blood tests, you'd have proof. What about a nutritionist? With your blood tests, they would most likely write you an order too. If all you need is a piece of paper stating you need to be off gluten, there are quicker and much less invasive ways of getting that. A lot of alternative health practitioners think gluten isn't good for you anyway, so I'm sure it would be no trouble getting an order to be off it.

Beth

Well, the problem with my bloodwork is that it all turned up negative. If it had turned up positive I probably would not have gone through with all of this biopsy business in the first place.

It might not be a bad idea to see an alternative practitioner. I'll look into it.

NOT HEREDITARY??????????? The first question my GI asked me was if I had other family members who have had ANY type of "irritable bowel, ulcerative colitis, chronic diarrhea" or any diagnosis like those. He asked about ALL of them -- including my kids. He asked about their feeding histories, GI symptoms since they've been grown . . . . . then said we should go ahead and get a definitive diagnosis. I was scheduled to have my endoscopy and colonoscopy within four days. I had my bloodwork drawn that day. He did tell me not to go gluten-free before the endoscopy. He said that the turnover in the small intestine is VERY fast, and that if I had just small amounts of flattened villi, they could theoretically begin healing and he did NOT want that.

You need a new GI. Particularly if your dad came home that night in a "hinky" mood. (I know that's an old person term, but it sometimes works the best!) BTW: How old are you? If you are 18 or older, you have to SIGN that it is okay for your physician to share information with your father. Otherwise, he is NOT allowed to talk with him.

Please take care of you. I hope you get some definitive answers soon.

Yeah, definitely this guy is a jerk. Well, the endoscopy is on Wednesday. When I originally scheduled an appointment, this was the soonest I could get in to see ANY GI. The wait for others in town was much, much longer. At this point it will be easiest just to go ahead with this biopsy and find a new GI afterward.

I'm 20, but I DID sign paperwork releasing information to both my mom and my dad. They gave me a form, explained that if I wanted my info released to anyone, I should put their names and numbers on it and sign. That was done before I ever even met the GI. I get the feeling he just didn't want any arguments from angry parents :/

You can sign a form that prevents the office staff or the doctor from disclosing information to your parents with regard to your condition. They mark the chart (usually) with some brightly colored sticker so that everyone will know that you have one of these papers on file. HIPAA makes it VERY clear that once you sign this, no one is allowed to discuss with your parents your condition. The last thing you need, on top of battling an illness, is people who don't believe you. I've been there with my sister, who tried to convince my entire family that I had "conversion disorder" -- a Freudian concept which is not accepted by today's standards. At 20, you have the right to privacy. I treated patients who revoked permission to disclose information. It's more common than you think.

I'm anxious to hear how the scope goes (or went -- have been in a whirlwind lately) and hope you're doing well. Please take care of you.

((((((((((hugs))))))))))
Lynne

See, I'm pretty sure this was a different kind of form. The receptionist explained that the policy was anyone not on the list would not be given any information, so if I WANTED someone to be able to call on my behalf, I should list them. That's exactly why I listed my parents. Granted, I have the right to privacy if I so chose, I figured in case of any confusion or emergency, it would be better that they be able to obtain the information. I live with them during school breaks, they're going to find this all out anyway. I wanted them to be able to have access to the records in case any situation like this were to occur. I filled out the form giving them access, and yet the GI told my dad over the phone that he "needed my permission". My dad suggested he call me and ask for the permission, and he did. I said that I'd filled out the form and he is allowed to talk to my dad about anything, but the GI never actually bothered calling me back. Again, I REALLY just get the feeling he was avoiding talking to my dad. Because actually, I'd talked to the nurse earlier that day, and when she asked about releasing info to my dad I said that it was fine then, too. By the time the GI talked to my dad over the phone, I'd not only signed a form but told a nurse over the phone that it was fine to talk to him.

I understand it's a strict policy, but I've already given written permission for them to disclose info to my parents. I don't know what else they need... and if they need written permission, calling me and asking me seems like very lax security to me. If they need a signature, I don't see why simply asking me over the phone would be enough. So yeah, I think the entire thing was BS.

But thanks... I'm really anxious for the results, too. I just keep thinking "what if it's negative? Then what?" The endoscopy is scheduled for Wednesday, so hopefully I'm almost through with this nightmare!! Thanks again

What is it with these doctors? My mom was an R.N. and she always said that most specialists are jerks. Actually she used stronger language LOL. I'm so sick of these doctors who think they know your body better than you do.

I had a very similar experience with a rheumatologist that my primary doctor sent me to. (Although, it turned out it wasn't the correct specialist to help me, I applaud my doctor for taking my symptoms seriously.) The rheumatologist was a piece of work, and tried to tell me I had anxiety and was depressed. But I got him to order the tests, and he sent them to my primary care doctor. Most of the time, you don't even have to request test results to be sent to your doctor. In the U.S. it is often done automatically. I didn't go back to the rheumtologist. I just got the results from my doctor. But if I were in your shoes, I'd go ahead with the endoscopy. You have nothing to lose. He's not the one who is going to actually examine the biopsy.

Oh I know... isn't it incredible how these supposed specialists can be so, well, stupid?? It's as if they all get stuck on one or two conditions and think nothing else is possible, and that since we (as non doctors) are stupid to assume we know anything about our own bodies. Any research we might have done is useless, since we don't have a phd.

In other news, the biopsy is TOMORROW. I'm currently on all liquids to prepare. In 24 hours I'll be gluten free!

Best of luck, Liz. I hope you get some answers. Make sure you get a copy of the pathology report when your results come in.