I'm Seeing The Gi Today For The First Time And I'm Petrified

[Electra]

I got positive blood tests for Celiac about a month ago and I was so bad at that point that my husband was ready to admit me to a psych ward (NO JOKE)!!

With encourageing words from this board, I decided I had Celiac, and that I could not subject my kids to the "GLUTENED" me any longer. It was just to hard on them. I went gluten free hoping that the GI would not require an intestinal biopsy because of my malnutrition symptoms and my positive blood tests.

Well I've been reading over my Celiac materials this morning and EVERYTHING I read says that after you get positive blood test an intestinal biopsy will be needed in order to make a diagnosis!!!

What in the heck do I do now? I've been completely gluten free for at least 2-3 weeks and I cut back on gluten a week before that, so it's been almost a month. If he requires a biopsy and I have to go back on gluten it may still not show up for months, and I can not poison myself and feel that bad for that long. I knew this could happen and I just couldn't handle gluten at the time, so I had to give it up, but I was hoping that doctors could diagnose Celiac without the biopsy GRRRRRRRRRRRR!!

A diagnosis is very important to me, but I'm not sure it's worth risking my life over. I had gotten to the point of where I had been rushed to the hospital by ambulance with excrutiating pain, so I'm not sure I would have lived much longer had I stayed on gluten. If the doctor tells me they have to do a biopsy in order to confirm a diagnosis, what info can I give him that may convince him that I don't need the biopsy for a dianosis? Does anyone have any good resources or info here? Man I'm shaking like a leaf and feel like I've been glutened because I'm so nervous lol!!

[Jestgar]

I don't understand why you feel you need an additional diagnosis. What would change?

[Electra]

Well If I understand it correctly blood tests alone do not give you a diagnosis, so they may think that I don't have it if the biopsy doesn't come back positive. I'm sure I'm just worrying way too much over it. I can't wait to get there so that I can at least get it over with and move onto the next step !!

[Jestgar]

I guess I mean "Why do you care what they think?" You don't need a prescription...

[Electra]

I guess I mean "Why do you care what they think?" You don't need a prescription...

Because there are a number of benefits to having the diagnosis. That's my opinion, but it's important to me to know for sure. If they think it's something else then I don't want to assume it's Celiac until we know for sure!!

[Viola 1]

Well If I understand it correctly blood tests alone do not give you a diagnosis, so they may think that I don't have it if the biopsy doesn't come back positive. I'm sure I'm just worrying way too much over it. I can't wait to get there so that I can at least get it over with and move onto the next step !!

Biopsies are only accurate if the surgeon takes them from several spots in the intestine.

Some doctors will accept the blood tests being positive , and a postive response to the diet as proof of Celiac disease.

Mine used to insist on the biopsy, but has changed his mind after seeing many with positive blood tests go on to healing with the diet. He now thinks the biopsy is not necessary.

Thinking about any medical test is the hardest part. Getting it done (if you have to) and over with is the easy part.

[Jestgar]

Because there are a number of benefits to having the diagnosis.

I'm not meaning to be ornery, but I'm curious what benefits? Unless you mean personal ones which is a whole different thing.

[Viola 1]

I'm not meaning to be ornery, but I'm curious what benefits? Unless you mean personal ones which is a whole different thing.

I'm not sure where the poster is from, but here in Canada you can get tax benefits with a possitve diagnoses.

Also you can get a disability grant from the federal government for retraining if you are in a very physical job that you can't keep up with. Again the diagnoses has to be complete.

[Judyin Philly]

Please keep us posted on the dr visit.

I face this too ..a new GI apt on March 8th.

Good Luck

Hope you like him and he likes you being 'informed'

Judy

[rez]

Electra, I can totally relate to what you are saying. I agree with you 110%. I feel like I owe it so my 8 year old son to do the best I can for him since this is something he will be living with for the rest of his life. I feel that it is best to try to go the medical route first with good doctors, and then you can always implement a gluten-free diet if those all come back negative. Don't be discouraged from doing the biopsy. There is a good chance it may still show damage. Most literature says it takes most adults 6mos to a year to heal. Also, blood work normalizes before the biopsy does. You will have peace of mind forever knowing your diagnosis. I also feel it is important because it's genetic and other family members should be screened. I think the key is finding a great doctor. It took time and a lot of trying, but we are in the hands of wonderful docs now and it makes me feel a lot better and my job is a lot easier. Good luck!

[Electra]

Good news, good news, good news!! The doctor diagnosed me without the biopsy. He said the fact that I had been B12 deficient, had problems with my iron being low many times before, had a positive Celiac panel, and the fact that the diet is working for me were enough for a diagnosis. He said if he would have seen me before the Celiac panel then he probably would have been testing for IBS because I have more symptoms of that, but I disagree lol(about the symptoms part)!! He did say that a lot of people he sees for Celiac do not respond well to the diet, but I think that may be because a lot of Celiacs end up having other food allergies too!! He also said that most of the Celiacs he sees do not have any symptoms (probably because he diagnoses them all with IBS LOL).

He said we are still going to do the biopsy, so we scheduled it for Monday afternoon. He said if it comes back negative then that simply means that I am doing a great job sticking to the diet and that we've made the right diagnosis, and if it comes back positive then that simply means that the damage hasn't had time to fully heal and that would just further confirm my diagnosis. I also had pain when he pushed under my ribs on my right side and that concerned him. He thought it may have something to do with my liver, so they are suppose to check that out during the biopsy too. Hopefully my liver and everything else are ok.

He didn't say anything about taking more then one sample, but at this point I don't care as long as he didn't ask me to go back on gluten. I told him I was scared to death that he would ask me to do that, and he said NO that would be the worst thing for someone who has responded in a positive way to the diet (especially if they've already had positive blood test results)!! He said during the scope they will look for any suspicious spots and if they find any they will biopsy them. Well they probably won't find any, but who cares at this point as long as I'm feeling better.

It's funny because I almost feel like I'm in AA or something but I want to call it CA (celiacs anonymous) LOL!! Hi my name is Angie and I have Celiac Disease. Hey at least I still have some humor left hehe!!

[rez]

Good for you! You can let your guard down. I'm glad that you can move on and feel better! Good luck!

[jerseyangel]

Angie,

I know that you wanted a firm diagnosis--and I'm glad that your doctor used common sense and went ahead and called it on your blood tests and diet response.

Welcome to the family! We're here for you.

[Jestgar]

Angie,

I'm so glad you have a sensible doctor!

[happygirl]

Angie:

It is worth it to confirm with him to take "multiple biopsies in multiple sites" like Shirley mentioned earlier. It will increase your chance of "finding" it if it were there. You might as well "make it worth your while."

Just so you know, although your doctor has given you the label of Celiac (which, by all means, it certainly makes sense!), in terms of being seen by the "larger" Celiac medical community, they will not consider you a "full" Celiac (no gold standard) if you do not have a positive biopsy. In all honesty, there are really only two instances that I can think of that would affect you, or anyone:

1. you will not qualify for *most* clinical research studies on Celiac. Most require positive bloodwork and positive biopsy.

2. you switch doctors and you have a doctor who feels the need to "prove" you have it. In this case, its annoying (I know, I have been there, done that, got the gluten free t-shirt), but all you have to do is stick to your guns and tell them you don't care what they "label" you, you are not going back on gluten.

[Electra]

Angie:

It is worth it to confirm with him to take "multiple biopsies in multiple sites" like Shirley mentioned earlier. It will increase your chance of "finding" it if it were there. You might as well "make it worth your while."

Just so you know, although your doctor has given you the label of Celiac (which, by all means, it certainly makes sense!), in terms of being seen by the "larger" Celiac medical community, they will not consider you a "full" Celiac (no gold standard) if you do not have a positive biopsy. In all honesty, there are really only two instances that I can think of that would affect you, or anyone:

1. you will not qualify for *most* clinical research studies on Celiac. Most require positive bloodwork and positive biopsy.

2. you switch doctors and you have a doctor who feels the need to "prove" you have it. In this case, its annoying (I know, I have been there, done that, got the gluten free t-shirt), but all you have to do is stick to your guns and tell them you don't care what they "label" you, you are not going back on gluten.

Well I don't really care about a diagnosis for clinical research purposes lol!! I highly doubt they will EVER have a clinical trial in my state let alone my area !!

Thanks everyone for all the support. You guys are great!!

[Viola 1]

Wow, that's great news Angie!

As long as he is doing the biopsy, he might as well test several spots as it doesn't take any more prep time.

Oh, and that pain ... A lot of Celiacs have a pain there. My doctor says it's because the illium is trapping larger particles of food than it should as we don't always break it down properly in the intestine. Mine only shows up now if I get contaminated, but before I was completely healed ... or as healed as I ever will be, it was there most of the time.

[Phyllis28]

Angie,

I am glad you have a sensible doctor.

Angie:

2. you switch doctors and you have a doctor who feels the need to "prove" you have it. In this case, its annoying (I know, I have been there, done that, got the gluten free t-shirt), but all you have to do is stick to your guns and tell them you don't care what they "label" you, you are not going back on gluten.

FYI, I have a diagnosis on Celiac only based on an Upper GI and response to the diet. Today, there is a lot more testing available than there was 28 years ago. I have never been asked to "prove" that I have Celiac, although I don't doubt this happens. I, personally, would run, not walk, from any doctor who asked me to "prove" it.

[Electra]

Wow, that's great news Angie!

As long as he is doing the biopsy, he might as well test several spots as it doesn't take any more prep time.

Oh, and that pain ... A lot of Celiacs have a pain there. My doctor says it's because the illium is trapping larger particles of food than it should as we don't always break it down properly in the intestine. Mine only shows up now if I get contaminated, but before I was completely healed ... or as healed as I ever will be, it was there most of the time.

Maybe that's a good sign that I still have damage and that they may actually find something that tests positive. It would be really great to have it confirmed on a biopsy!!

[Viola 1]

Let us know as soon as you have results!

Now I'd better get off here and make supper or hubby will be a little irritated

[tarnalberry]

yes, congrats on the sensible doctor!

[happygirl]

Off the topic a bit here Angie, but I had to add this, to give reference for why, for *some*, it can be important to have a "complete" diagnosis.

I did not have a positive biopsy (doctor knew nothing about Celiac, told me to go gluten free, and five weeks later, I had the biopsy...and he only took one sample). My positive dietary response and bloodwork was enough for us all, including him, to know I had Celiac. Going gluten free gave me my life back and I feel lucky that I figured out what the problem was.

I moved (after finishing grad school) ... and about 1.5 years after my diagnosis, I began having other problems, that I knew were not gluten related. I found a highly regarded GI....who all he wanted to do was question my "diagnosis." I fought with him, and all he wanted to do was put me back on gluten to "see" if I really had it. I refused, and parted ways with him, because he was too focused on "if" I had Celiac. He refused to acknowledge that I was having other issues. My record even says something to the effect of, "When patient improves, will challenge with gluten to see if she has Celiac." (Well, we are approaching 1 year of this h*ll and I have yet to improve---go figure). My GP questioned it as well. My second GI in this town (another highly regarded lady) didn't really say too much about it, but agreed I had a gluten problem.

Accepted a new job and moved in the midst of getting progressively worse. Through a great network, I got in with specialists at both Johns Hopkins and NIH. NIH doc told me there was no way of knowing if I "really" had "true" Celiac without a positive biopsy. We of course, butted heads over this topic, but he finally relented and said that the treatment I would receive from anyone would not be any different if I had biopsy proven Celiac or not, as long as I knew gluten was a problem (and I have had multiple repeat bloodwork and biopsies to confirm that I am sticking to the gluten free diet). JH doctor was rationale and agreed that it was not important enough to know if I was "Celiac" or "gluten intolerant" but that given the bloodwork, gene, and positive dietary response, it was certainly likely that it was Celiac---and either way, it didn't matter, as long as I continued on the gluten free diet. In between all this, I got in with a doctor in private practice who used to be the top GI at Bethesda Nav. Hospital, who told me to my face it was not Celiac Disease, that gluten wasn't a problem, and that it was probably the placebo effect, essentially. Without the biopsy, he refused to believe it was an option, and thought it was "over" diagnosed.

Needless to say, I am not under the care of these doctors anymore (although the JH doc was great, his specialty was Crohn's, and I don't have Crohn's....). So, being questioned by doctors can be a large problem. If I had known all that I had gone through, I would've continued to eat gluten initially so that I could have had a positive biopsy by a competent doctor. It would have saved me so much time and effort, and possibly would have helped me in obtaining whatever my "issue" is at the current time sooner.

The point is: It is scary to me that I had access to some of the best "specialists" out there, and in general, I was dismissed because I didn't have the positive biopsy. Further, at some point, they ALL passed along incorrect information to me about Celiac, which I had to correct and provide references for. It was further infuriating that to most of them, it was either "biopsy proven Celiac" or nothing....they knew absolutely nothing about non-Celiac gluten sensitivity.

That is my rant about the medical community and their problems with diagnosing/understanding Celiac. I am luckily under the care of a MD that knows that gluten is a severe problem for me, noted it, wanted to make sure that I was adhering to the diet, and moved on to working on figuring out what ELSE is going on.

So yes, Phyllis, walking, not running, is the best advice. I kept running....to more ignorant docs though!

It gives me hope when I hear of other board members who have doctors who "get it"---who get that going gluten free, for whatever reason, helps. Who would've thought that it could create such controversy?

[Electra]

Off the topic a bit here Angie, but I had to add this, to give reference for why, for *some*, it can be important to have a "complete" diagnosis.

I did not have a positive biopsy (doctor knew nothing about Celiac, told me to go gluten free, and five weeks later, I had the biopsy...and he only took one sample). My positive dietary response and bloodwork was enough for us all, including him, to know I had Celiac. Going gluten free gave me my life back and I feel lucky that I figured out what the problem was.

I moved (after finishing grad school) ... and about 1.5 years after my diagnosis, I began having other problems, that I knew were not gluten related. I found a highly regarded GI....who all he wanted to do was question my "diagnosis." I fought with him, and all he wanted to do was put me back on gluten to "see" if I really had it. I refused, and parted ways with him, because he was too focused on "if" I had Celiac. He refused to acknowledge that I was having other issues. My record even says something to the effect of, "When patient improves, will challenge with gluten to see if she has Celiac." (Well, we are approaching 1 year of this h*ll and I have yet to improve---go figure). My GP questioned it as well. My second GI in this town (another highly regarded lady) didn't really say too much about it, but agreed I had a gluten problem.

Accepted a new job and moved in the midst of getting progressively worse. Through a great network, I got in with specialists at both Johns Hopkins and NIH. NIH doc told me there was no way of knowing if I "really" had "true" Celiac without a positive biopsy. We of course, butted heads over this topic, but he finally relented and said that the treatment I would receive from anyone would not be any different if I had biopsy proven Celiac or not, as long as I knew gluten was a problem (and I have had multiple repeat bloodwork and biopsies to confirm that I am sticking to the gluten free diet). JH doctor was rationale and agreed that it was not important enough to know if I was "Celiac" or "gluten intolerant" but that given the bloodwork, gene, and positive dietary response, it was certainly likely that it was Celiac---and either way, it didn't matter, as long as I continued on the gluten free diet. In between all this, I got in with a doctor in private practice who used to be the top GI at Bethesda Nav. Hospital, who told me to my face it was not Celiac Disease, that gluten wasn't a problem, and that it was probably the placebo effect, essentially. Without the biopsy, he refused to believe it was an option, and thought it was "over" diagnosed.

Needless to say, I am not under the care of these doctors anymore (although the JH doc was great, his specialty was Crohn's, and I don't have Crohn's....). So, being questioned by doctors can be a large problem. If I had known all that I had gone through, I would've continued to eat gluten initially so that I could have had a positive biopsy by a competent doctor. It would have saved me so much time and effort, and possibly would have helped me in obtaining whatever my "issue" is at the current time sooner.

The point is: It is scary to me that I had access to some of the best "specialists" out there, and in general, I was dismissed because I didn't have the positive biopsy. Further, at some point, they ALL passed along incorrect information to me about Celiac, which I had to correct and provide references for. It was further infuriating that to most of them, it was either "biopsy proven Celiac" or nothing....they knew absolutely nothing about non-Celiac gluten sensitivity.

That is my rant about the medical community and their problems with diagnosing/understanding Celiac. I am luckily under the care of a MD that knows that gluten is a severe problem for me, noted it, wanted to make sure that I was adhering to the diet, and moved on to working on figuring out what ELSE is going on.

So yes, Phyllis, walking, not running, is the best advice. I kept running....to more ignorant docs though!

It gives me hope when I hear of other board members who have doctors who "get it"---who get that going gluten free, for whatever reason, helps. Who would've thought that it could create such controversy?

Yah that's definitely the kind of situation I'm scared of. There is probably NO chance in heck at this point that my biopsy will be positive. I went gluten free about a month ago, but wasn't diligent the first two weeks and cheated off and on. The last two weeks I have been completely gluten free, but I suspect I may have had slight contaminations here and there. I really hope my biopsy comes out positive so I can avoid any situation that could turn into what you've had to go through.

I'm really sorry you've had to deal with such madness. It stinks when doctors care more about how much they "think" they know instead of just treating you like you have it and trying to figure out what else could be contributing to your symptoms.

Man I wonder if they should make alcoholics drink constantly until they get liver or kidney damage before they diagnose Alcoholism. Wouldn't that be something LOL!!

[par18]

Angie,

Why make the effort to go on the diet and not be diligent or careful? The only way the diet can be accurate as a diagnostic tool is to do it correctly. Anything less can confuse yourself and any doctor who wishes to treat you. I know there are a lot of uneducated and inexperienced doctors out there who will take every opportunity to discredit what you have to say. The trick is to have an accurate diet response one way or the other. At some point you are going to have to get really sick in order to get a positive diagnosis if that is what you seek.(that is if you really do have Celiac). The other alternative is to get serious on the diet and see what happens. There are "no" advantages of an official diagnosis in the US except piece of mind. Anything else including the cost of gluten free food and health insurance is a negative. If you think that a positive diagnosis will guarantee any more support among family/friends/co-workers etc. then you may be in for a surprise. "The average person does not care about this one way or the other"! The reason is simple and that is because they like the average doctor do not understand it. My positive diagnosis has resulted in exactly no monetary benefits but the fact that I feel good every day is all the reward I want. I may be wrong but it looks to me like the only way you will be willing to get serious about the diet is if you have that diagnosis. If this is true good luck and I hope you get it.

Tom

[Jestgar]

I just don't understand why a doctor would care what we eat. What difference does it make in anything they would do?