Angry At My Gi Doctor

[Rob-A]

I finally had my EGD this past Tuesday. I have spoken at length with my GI about the possibility that my Eosinophilic Esophagitis is being cause Celiac/Sprue or gluten intolerance. The last time we spoke before the procedure he told me that he was going to biopsy my small intestine to check for Celiac and he notated this in his note in my chart. I also informed him that I was forcing myself to eat wheat/gluten despite the fact that it causes horrible joint/muscle pain, stomach pain, fluttering in my abdomen, and skin lesions.

So, I had the EGD and had my follow-up today and guess what? He didn't do the biopsy. He told me that he didn't feel the need since he had done one the last time and it came back negative. The big difference was that I wasn't eating gluten when he did the last biopsy. He also said that he was just trying to save me money, which I think is total BS. So the last two months that I've been forcing myself to eat gluten have been for nothing. He said that he would gladly put me back under for another one if I wanted to have it so badly.

I'm also stuck, because my insurance won't pay for me to see any other GI doctors. I am limited to the doctors in the institution that I work for. I know that none of the doctors there will contradict anything that one of their colleagues says. It's the biggest incestuous organization I've ever seen.

So now what? I guess I am just going to go back to a gluten free diet and never know for sure. I do know that I had Chicago pizza tonight and now my neck, upper back, and scalp are covered in pustules. I also feel like I've been beaten by a pool cue.

Life goes on

[mushroom]

And then people have the nerve to wonder how come people are crazy enough to self-diagnose.

[hnybny91]

WTH??? Why don't doctors realize that they work for US? Was he paying the bill? NO! So why on earth woud he "try to save you money" when you specifically requested a biopsy? UNBELIEVEABLE!!!

[kareng]

So now what? I guess I am just going to go back to a gluten free diet and never know for sure. I do know that I had Chicago pizza tonight and now my neck, upper back, and scalp are covered in pustules. I also feel like I've been beaten by a pool cue.

Life goes on

Run, don't walk, to the Dermatologist. See if you can get the break out biopsied. They need to biopsy the skin next to the blister to check for antibodies. That could give you your official diagnosis.

[ravenwoodglass]

Get complete copies of your records, highlight that you had asked to be tested for celiac and any notes about your reaction to the challenge that you did and also whether he requested, advised the challenge or was told you were doing one for diagnosis. Then send copies of those records to the head of his dept, the medical board in your state and your insurance company. I would contest paying for that procedure under those circumstances. Don't just not pay for it as that will effect your credit rating formally contest it.

Have you had any blood work for celiac? If so what were the results? If you had been on the diet 2 months back on gluten may not be long enough for it to be positive from the challenge but if you are not yet back on the diet get him or your GP to draw the panel today and then go back to the diet. Your reaction to the challenge is enough 'proof' from your body you need the diet. You don't really need his permission to be gluten free.

[Rob-A]

Get complete copies of your records, highlight that you had asked to be tested for celiac and any notes about your reaction to the challenge that you did and also whether he requested, advised the challenge or was told you were doing one for diagnosis. Then send copies of those records to the head of his dept, the medical board in your state and your insurance company. I would contest paying for that procedure under those circumstances. Don't just not pay for it as that will effect your credit rating formally contest it.

Have you had any blood work for celiac? If so what were the results? If you had been on the diet 2 months back on gluten may not be long enough for it to be positive from the challenge but if you are not yet back on the diet get him or your GP to draw the panel today and then go back to the diet. Your reaction to the challenge is enough 'proof' from your body you need the diet. You don't really need his permission to be gluten free.

Well, Celiac wasn't the only reason for the EGD. I have a history of Eosinophilic Esophagitis and Barrett's. I had been having problems with getting food stuck, so they were going to check on that and were going to do the small intestine biopsy while in there. It is notated in my chart that he was planning on doing the biopsy. He also did a Celiac panel, which came back normal. Thankfully my other biopsies came back negative for both Eosinophils and Barrett's. As for the panel, he had that drawn and run almost a month ago and it came back negative. I'm kind of stuck because I work for the same institution that my doctor works for. I don't want to drop the name of that institution, but I understand that they are usually pretty good about detecting Celiac.

I really want a diagnosis because I think it will help me cope with all of the horrible pain I've been going through for such a long time. I know that I don't need a doctors permission to go on a gluten free diet. I just want to be able to say that all those times when I thought my body was on fire or had sores all over my scalp and neck I wasn't just imagining it. I will pursue the dermatology route since I'm not going to get anywhere with the GI route. Thanks everyone for being out there.

[zus888]

So now what? I guess I am just going to go back to a gluten free diet and never know for sure. I do know that I had Chicago pizza tonight and now my neck, upper back, and scalp are covered in pustules. I also feel like I've been beaten by a pool cue.

I'm so sorry you have a sh!t doctor. But it sounds to me like you DO know for sure. I don't think you need a doc to tell you what you already know and have experienced. I'm very lucky in that I am pretty sure my GI doc would diagnose me with celiac based on the diet alone. He seems to be "in the know" about gluten introlerance. I'm reading a book called, "Healthier Without Wheat" and it's very enlightening. Celiac is just one "symptom" of gluten intolerance and the symptoms of gluten intolerance are many and varied. And if you know you are reacting to it, then the best thing you can do for yourself and your health is to stay on the diet. It's not worth it for you to keep making yourself sick to prove to a doctor what you already know. In the end, what benefit does that provide to you?

[nora-n]

two months back on gluten might not even be enough, can you get the biopsy done after three months?

I was five weeks back on gluten, and was negative.

I read on forums, that often the biopsies are oriented wrong on the slides, so a negative biopsy does not mean much either.

I had lots of problems with my esophagus too, and I had to eliminate milk too, and now it is okay. The biopsy in the esophagus was negative for ee. But it came at the same time as the celiac symptoms, and went away after going gluten-free cf. No diagnosis for either. I have no problems being gluten-free.

[IrishHeart]

Rob,

I cannot say how angry I am FOR you that he did this, especially after you ate the poison to have the biopsy!

I have read 3 posts --just this morning--about arrogant doctors and I have met my share of them as well.

I am like you.

I wanted a positive TEST result for proof, for some reason. To validate my years of pain and anguish and so I could say "I told you so", to all the doctors who dismissed me. My blood work was NEG and I went gluten-free myself after being so sick for YEARS and YEARS and I am starting to feel better. That is MY proof!

Now, my PC doctor says he won't put me through any more tests. That going gluten-free was the right thing to do and we both know what was killing me and that I MUST avoid gluten for life. I have decided that is good enough for me. He has celiac children and told me flat out that the tests are too often falsely negative--even the biopsies. He didn't even make the connection to gluten for me for 3 years either, but that's okay. I'm over it.

If you can have the skin eruptions biopsied, that may shed light. But if it's neg too....it doesn't mean you are not gluten intolerant. I have sores and scalp issues. The dermatologist said I was "fine". Fine? My scalp is red and covered in sores and peeling and my hair fell out. Idiots! (it's better gluten-free)

Many people on here don't have a "definitive celiac" diagnosis, but they sure as heck are getting better without gluten in their bodies. The spectrum for gluten sensitivity is wide. You have said that you feel better off gluten...that is your diagnosis.

It's not your imagination. You don't imagine pain and sores, hon! You say you'll never know for sure...I think you do know, Rob... You eat gluten and you are sick and in pain. You stop eating gluten and you feel better. Sounds pretty "scientific" to me!! My husband--a scientist---says that's proof!!

...what if there were no such tests at all and the only diagnosis was through dietary exclusion? In our case, that's all we've got.

Since the only treatment for celiac is a gluten-free diet anyway, just do what makes you feel better. It took me a while to come to some peace about it. I wanted that PROOF but ya know what?? It's just wasted energy and I don't give a rat's butt anymore what doctors/tests say.

:D

The fact that I'm not in the bathroom every day and able to make complete sentences again is all that matters. Hopefully, I will be able to regain all the muscle mass I lost and stop the excruciating bone/joint/muscle pain I live with while waiting for some doctor to figure out what was wrong with me....

WE are our own healers.

Take care of yourself and ditch the pizza ASAP!