What Should I Ask To Get Done? 11-7-05

[Guest DanceswithWolves]

Ok...Tuesday afternoon is my next Dr. appt.

I am taking my blood panel results back with me and I am going to have it all explained to me. According to my stool results they claim I do not have Celiac D. There have been signs of absorption of foods. Is this the ONLY way they can tell?

What's the deal with getting an Enterolab test? Do I ask for that to get done? Is that for Gluten Sensitvity only?

Should I request a referral to an allergist too?

I want to show that I'm prepared. Hopefully, they just don't sit there and suggest I need a shrink. I think the Prozac is helping me, and I still want to continue with that, but my symptoms still rage on. I think that alone, will force my doctor to think a little. Imagine that..they might have to actually use their PHD!!

I haven't really gained any weight back and I still wake up in the morning with a nauseous feeling in my stomach and I burp quite a bit. I find it hard to believe this is just GERD every day. It's not like I'm having a feast every day or even eating all fast food. My gastro said I just have IBS...and I should "eat whatever I want". HUh???

Idiot!

I would like some suggestions by the time I come home from work. I will pop back on this board to check for any helpful replies. I really, really appreciate it!

[FaithInScienceToo]

Hi Dancer ;-)

I just read a bit about your "Gilbert's Syndrome" - wow...it affects 1 in 20!

Anyway...the stomach issues associated with it are SO similar to celiac disease...

About your stool tests - it's good that you are absorbing fats.

WHAT ARE YOUR BLOOD PANEL results????

About Enterolab - you cannot ask your doc to order those tests for you - I don't think you can, at least...

Does anyone else know about that?

What kind of insurance do you have?

Besides gliadin antibodies, those tests can help you find out if you have dairy and egg antibodies...which might be causing some of your problems - do you consume dairy or eggs?

Also, are you aware of all of the food problems associated with Glibert's syndrome? I imagine that you are...

I found a link about tips for dealing with it, including dietary and life-style changes:

Open Original Shared Link

I'll check back later - to try to chat with you before your doc visit.

Best wishes,

Gina

[Rachel--24]

Enterolab tests can be ordered online...you don't need a doctor to order them. You just go to the website and order the tests you would like to have done. There is lots of useful information about these tests and about gluten sensitivity on the site.

Open Original Shared Link

[Nantzie]

I would, at some point during the appt, in a sincere and calm voice, ask him if he is planning on doing any more testing on you, or if he believes that your symptoms are psychosomatic and believes there is nothing more he can do.

The trick here is to stay very, VERY calm. Speak in an even voice. Don't be confrontational or argumentative at all. The first thing this is going to do is disarm him against what he is expecting. He will be expecting some arguing and confrontation so he'll be braced and have his adrenaline up for that. When it's not there, he's not really going to know what to do. Then when you ask him his opinion on the next steps, he's probably going to tell you more than he was planning on because that adrenaline has to go somewhere, and it will probably make him talkative.

But you have to stay very calm and even during the entire appt, or it won't work.

This is a trick my stepmom taught me when, as a woman, men in business tend to talk down to us and treat us like "the little woman". My stepmom owns and runs a transportation company, so she runs into this type of thing a lot. Especially with men thinking she couldn't possibly know what the heck she's doing, even though she's been doing this for 20 years.

It's just a business-geared application of the "getting more flies with honey than with vinegar" approach.

Just my two cents...

Nancy

[cy7878]

Ok...Tuesday afternoon is my next Dr. appt.

I am taking my blood panel results back with me and I am going to have it all explained to me. According to my stool results they claim I do not have Celiac D. There have been signs of absorption of foods. Is this the ONLY way they can tell?

What's the deal with getting an Enterolab test? Do I ask for that to get done? Is that for Gluten Sensitvity only?

Should I request a referral to an allergist too?

I want to show that I'm prepared. Hopefully, they just don't sit there and suggest I need a shrink. I think the Prozac is helping me, and I still want to continue with that, but my symptoms still rage on. I think that alone, will force my doctor to think a little. Imagine that..they might have to actually use their PHD!! 

I haven't really gained any weight back and I still wake up in the morning with a nauseous feeling in my stomach and I burp quite a bit. I find it hard to believe this is just GERD every day. It's not like I'm having a feast every day or even eating all fast food. My gastro said I just have IBS...and I should "eat whatever I want". HUh???

Idiot! 

I would like some suggestions by the time I come home from work. I will pop back on this board to check for any helpful replies. I really, really appreciate it!

<{POST_SNAPBACK}>

I would bring a copy of the latest Nation Institutes of Health Consensus

Open Original Shared Link

to your appointment. No where in the article will say a stool test is diagnostic for celiac disease, and it offers the lastest scientific recommendation to test for celiac disease. Believe me, an informed patient is impossible to argue against for your doctors. As for the enterolab stuff..... do you really believe that a lab that "opens" to public without doctor's oders can really reasonably be that useful? I would suggest sticking to the current guidelines and ask, like others said, nicely but firmly to have the proper tests done. If not, it's time for a new doctor.

Regards

[FaithInScienceToo]

As for the enterolab stuff.....  do you really believe that a lab that "opens" to public without doctor's oders can really reasonably be that useful?

<{POST_SNAPBACK}>

Have you read anything at all about Enterolab?

BTW, serologic testing for celiac disease was only 'discovered' a few decades ago...

Why does it seem so odd to you that stool testing for antibodies is not used by medical docs YET?

Gina

[Rachel--24]

Have you read anything at all about Enterolab?

BTW, serologic testing for celiac disease was only 'discovered' a few decades ago...

Why does it seem so odd to you that stool testing for antibodies is not used by medical docs YET?

Gina

<{POST_SNAPBACK}>

I agree, I think the stool tests will someday be used by doctors. The stool tests seem to be proving more useful to people than the bloodtests. At least thats the conclusion I've come to from my own experience and from reading the experiences of others on this board.

[Nantzie]

I don't know about you guys, but I'm old enough to remember an aunt being told by her doctor that there was no such thing as PMS. And I read once that PMS basically used to be considered a form of hysteria.

She read about it in Reader's Digest (or something), and it matched symptoms that she had been complaining to her doctor about for years. She thought that if she showed him the article, he would finally believe her. Instead, he told her that she was just thinking she had the symptoms because she had read about it.

Now, this was a doctor who really should have been more current on this, even back then. But he wasn't. And he wasn't going to let someone else tell him any different.

So rather than some doctors considering the possibility that they may be less informed than they should be about something, they assume there is something inherently wrong with the psyche of the patient.

So just because the medical community's collective current opinion is A, doesn't mean B isn't valid. In 20 years, the medical community's opinion will probably be something more like A+B.

But if most of us who are undiagnosed or blown off without at least proper testing, wait quietly 5, 10 or 20 years until full and complete celiac testing is just as common as testing for diabetes, we're in big, BIG trouble. Everybody has to make their own decision of whether they want to go down to alternative medicine route, or work on finding doctors who will listen, or be open when they are faced with an article about celiac from the NIH or the Mayo Clinic (for pete's sake). I think both routes are valid, it just depends what each person is comfortable with.

That's why I think forums like this are so valuable. We should all make a point to post good (and bad) doctor experiences in the doctors area of this forum so that we can all have hope of going to a doctor who will at least listen with an open mind. Because most of the time, we make our choice of doctor by pointing to a name in an insurance booklet. No information. No picture even. Just a name. Throw a dart at the page and then (depending on your insurance) you're stuck with Dr. Bob Bobson for the next year. And if Dr. Bob still believes with every fiber in his being everything his professors told him about celiac in 1973, you're not going to have much luck with getting a definitive answer.

So if Enterolab or York can give me SOME information to go on, I'm all for it. At my next doctor's appt, I'm taking my results from them in. I'm not going to present them as the gold standard that the doctor should bow to. But I am going to present it as a starting place for maybe an indication of those tests from a lab that the doctor trusts. If I have a positive TTG from York, I'm going to ask that a TTG be run again. If I get my genetic results from Enterolab back and I don't have any of the celiac or gluten-sensitive genes, I'm going to at least know that I'm barking up the wrong tree, and look at other reasons my symptoms are what they are.

Anyway... enough from me...

Nancy

[elonwy]

Hear, Hear Nancy!

I just want to add one thing. Your doc went to med school when? Consider the time in his/her busy day, seeing patients, filling out piles of insurance paperwork ( can be up to 40% of workload if its an HMO), playing golf.

They have journals to read, conferences to go to, etc, etc. What falls between the cracks? Who yells louder, the disease with a pharmaceutical company, or the disease no one has completely figured out yet.

I'm not knocking them, I'm just saying it HARD to keep track of all this stuff and keep up to date.

I work with computers, I'm suppossed to keep up to date on emerging technology, I think I get maybe 20-30% of stuff as it flys by.

So we help them, by having something hard to deal with, and not sitting back and taking for granted that they're right when they tell us its all in our heads, or its just GERD. Not cause they're bad people, but because life is hard and distracting, and sometimes they need help to see. and if they see us, maybe the next person will have an easier time.

My regular doc had never seen an adult come back with a positive celiac disease blood panel. Now she knows it can happen.

Dances - this has strayed off topic, but stick to your guns, don't let em tell you you're crazy. You might be, but if you KNOW somethings wrong with you, fight til they give you an answer that works. And yeah, calmly works waaayyy better.

Elonwy

[Guest DanceswithWolves]

Well, my doctor is a nice young woman and I believe she is learning along the way. According to my results (which I had explained) celiac disease has been ruled out.

She asked me "what am I concerned about the most?" I said..."My weight". She explained that due to the stressful job and relocation situation that I had last year, my body reacted to the way I felt mentally. She thinks that's all it was. I explained that I wake up in the morning with this nagging hunger so great...I eat and eat..and do not seem to gain as much weight as I thought I would by now; although I have gained at least 6 pounds since I came back home. I explained how I seem to go through an allergy attack about an hour after I eat. Runny nose, eyes, and I yawn. I also have GERD kick in. She then brought in the attending physician and I talked to him a bit. He agreed that maybe I would feel better seeing an allergist next. Finally. If I have food allergies...I want to know! I still have fatigue and find it difficult to exercise.

[FaithInScienceToo]

Hi Dancer,

Just curious - did she address your Gilbert's Syndrome at all, and all of the foods that can affect it?

Also, did you check out this link about that?:

Open Original Shared Link

Best wishes,

Gina

[Nantzie]

Woo Hoo!!!!! I'm so glad your appointment went well and that they listened to you.

Nancy

P.S. to Elonwy -- I was just pulling a number out of the air to go along with my tangent. But that's about right isn't it? A doctor in his mid to late 50's would have been in med school around 30 years ago? Anyway... Nothing specific meant by it. And I agree completely about how much time doctors are expected to spend keeping up on every single thing. It's impossible. Especially for a GP. So I'm sure a lot of the problems we are all running into is the doctor skimming the headlines in his medical journals and passing on reading an article on something as obscure (he assumes) as celiac disease, in order to spend more time reading the latest research about colon cancer or gastric reflux. It's not that he doesn't want to be informed of the latest research on celiac. He just doesn't realize that he isn't, ya know?

[Guest DanceswithWolves]

Hi Dancer,

Just curious - did she address your Gilbert's Syndrome at all, and all of the foods that can affect it?

Also, did you check out this link about that?:

Open Original Shared Link

Best wishes,

Gina

<{POST_SNAPBACK}>

Yeah, I did check out that link and it was great! My doctor, however I believe is still very inexperienced. Her reactions made me feel that I was "obsessed" with believing I had Celiac. After explaining to her about Gilbert's, she did explain that it is nothing that you can actually do about it, and it doesn't have a major effect on you. In a way, it sounded like she was just giving up on me. When she brought in the attending physician, he recommended that I go see an allergist if it puts my fears of any food allergies at ease. Put it this way...I may not have Celiac..but I KNOW for a fact that I have some kind of "gluten-meter" that goes off in my system. I can eat a pretzel and be burping for hours from it.

Same with cake or cookies.

Also, my fatigue never goes away. My joints crack and my neck is always stiff. I probably have that mysterious Fibromylagia. This can't all be from IBS.

[Rachel--24]

Also, my fatigue never goes away. My joints crack and my neck is always stiff. I probably have that mysterious Fibromylagia. This can't all be from IBS.

<{POST_SNAPBACK}>

I had those symptoms. My neck was extremely stiff and would crack when I moved it. I stayed in bed all day and I didn't have fibromyalgia. It was from gluten...and I didnt test positive for celiac disease in the bloodtests. I think if you keep waiting for some test to come back positive or for some doctor to tell you you need to be on a gluten-free diet...you may suffer alot longer than you really need to. Sounds like you know gluten affects you...you dont have to live with the IBS dx...you can stop eating gluten and feel better.

[FaithInScienceToo]

Yeah, I did check out that link and it was great!

<{POST_SNAPBACK}>

Glad that you found the link to be helpful.

I was AMAZED to learn about all of the food issues surrounding Gilbert's...

Sorry to hear that your doc dismissed it, in a sense.

Anyway...keep sleuthing, and pushing your docs, too, until you find all of your answers.

Best wishes,

Gina

[Guest nini]

I had those symptoms. My neck was extremely stiff and would crack when I moved it. I stayed in bed all day and I didn't have fibromyalgia. It was from gluten...and I didnt test positive for celiac disease in the bloodtests. I think if you keep waiting for some test to come back positive or for some doctor to tell you you need to be on a gluten-free diet...you may suffer alot longer than you really need to. Sounds like you know gluten affects you...you dont have to live with the IBS dx...you can stop eating gluten and feel better.

<{POST_SNAPBACK}>

I agree with this completely. Since you know that gluten is a problem go ahead and eliminate it. You can still do your allergy testing. Since you've already "ruled out" celiac there is no reason to continue consuming gluten. All of the other things that could possibly be going on, testing doesn't rely on whether or not you have gluten in your system. Why continue to suffer needlessly when you know it causes problems. Go ahead and go gluten free and continue with your quest, But I bet ya that a lot of your problems will start to go away once you are gluten-free.

[Guest DanceswithWolves]

Glad that you found the link to be helpful.

I was AMAZED to learn about all of the food issues surrounding Gilbert's...

Sorry to hear that your doc dismissed it, in a sense.

Anyway...keep sleuthing, and pushing your docs, too, until you find all of your answers.

Best wishes,

Gina

<{POST_SNAPBACK}>

Nah.....I'm done with these doctors. I'm broke. I'm going to an allergist next and that's it. I do realise that I am gluten intolerant, but at the same time, I believe my stomach is somehow "addicted" to it. That seems like the only possible explanation for the starving hunger pains every morning. Even as I write this @ 8:22 am, I am listening to my stomach churn and gurgle. I will just watch my intake. I strongly believe that the preservatives and the modified starches that is being put into breads and frozen foods is changing our stomachs and how we digest. In it's place it is making all Americans "addicted" to food. That way we keep struggling with our weight and consuming more as a nation without really realizing it. It's scary. We are all being fooled. Over half of this country is overweight because that's the way the FDA and the government wants us. Overweight Americans = money spent on health care and food. I doubt I will go 100% off of gluten due to my concerns with being skinney. I wish all of you that really do have celiac the best. I just hope my ingestion of gluten does not lead to celiac in the near future.

[aikiducky]

I doubt I will go 100% off of gluten due to my concerns with being skinney. I wish all of you that really do have celiac the best. I just hope my ingestion of gluten does not lead to celiac in the near future.

<{POST_SNAPBACK}>

I still think you should go all the way gluten free. It might well be that if your gluten sensitive, once you get rid of it in your system, that you'd finally be able to put some weight on. Going partially gluten free is just kidding yourself, IMHO. For what it's worth, and of course you make your own decisions.

Pauliina

[ravenwoodglass]

"I do realise that I am gluten intolerant, but at the same time, I believe my stomach is somehow "addicted" to it. That seems like the only possible explanation for the starving hunger pains every morning."

My son and I have talked about this because we both experience it. His thinking, and I agree, is that because the intolerance is affecting the absorption of nutrients and energy from the food we eat our bodies are constantly sending us the message we are hungrey to make up for it.  Since being totally gluten-free this has pretty much gone away for us. It took a while for him to gain weight and he loses a lot if he gets glutened, last time almost 10 lbs off his 116 lb body, in a very short time. His theroy about the constant hunger may not be correct but it sounds plausible to me.

"I just hope my ingestion of gluten does not lead to celiac in the near future."

I hope it doesn't too, or cause other health problems. Best wishes and I hope you get some relief soon.

<{POST_SNAPBACK}>

[kelliac]

...and I didnt test positive for celiac disease in the bloodtests. I think if you keep waiting for some test to come back positive or for some doctor to tell you you need to be on a gluten-free diet...you may suffer alot longer than you really need to. Sounds like you know gluten affects you...you dont have to live with the IBS dx...you can stop eating gluten and feel better.

<{POST_SNAPBACK}>

That sounds like great advice for anybody looking at this site and coming up negative in terms of blood work. Enterolab is IMHO saving lives everyday with their methods. More so than the typical GPs who dismiss celiac disease/gluten sensitivity so quickly. They need to LISTEN to their patients more.

[FaithInScienceToo]

We are all being fooled. Over half of this country is overweight because that's the way the FDA and the government wants us. Overweight Americans = money spent on health care and food.

<{POST_SNAPBACK}>

I respectufully strongly disagree with your conspiracy theory.

I would like to suggest that you look into a support group for Gilbert's Syndrome, since your stomach symptoms are very typical of it, and are influenced by many natural substances.

Best wishes,

Gina