Finally Got To See My Doc...

[HouseKat]

So, I had a doctor appointment yesterday morning with my primary care doc. (I went gluten-free September 2nd and I hadn't been able to get in to see him since then.) I told him about finding out that my aunt was diagnosed as celiac and her suggesting that I try the diet. I told him about how many of my various symptoms had gone away and that I've stopped taking the medications that were supposed to be treating those problems.

He was very open-minded about it, not telling me that I couldn't possibly have it as past doctors have done, but a few things that he said exposed how little he knows about this disease, such as, "Celiac...is an extremely rare condition." He said that it was "intriguing", and that I had "made a good case" for having celiac, having researched it so much and gathered so much "evidence".

The good news is that he has referred me to a GI to see about getting an endoscopy. The bad news is that the GI doc that I'm going to see is the same guy who did my colonoscopy a few months ago, and was a bit of a jerk. The GI doc had a cancellation, so I'm going to see him this Friday. If he gives me the run-around, I'm going to see if I can see a different GI doc.

My primary care doc didn't realize that an endoscopy might be a problem because of me being gluten-free now, but I didn't bother setting him straight just then. Having suffered with this condition for decades, I figure that having been gluten-free for only 11-12 weeks by time I have the endoscopy there will still be visible damage to my villi. Even if it doesn't, I don't care that much about having an "official", "gold standard" diagnosis, the change in my health that the gluten-free diet has brought on is proof enough for me.

Kate

[Trillian]

So, I had a doctor appointment yesterday morning with my primary care doc. (I went gluten-free September 2nd and I hadn't been able to get in to see him since then.) I told him about finding out that my aunt was diagnosed as celiac and her suggesting that I try the diet. I told him about how many of my various symptoms had gone away and that I've stopped taking the medications that were supposed to be treating those problems.

He was very open-minded about it, not telling me that I couldn't possibly have it as past doctors have done, but a few things that he said exposed how little he knows about this disease, such as, "Celiac...is an extremely rare condition." He said that it was "intriguing", and that I had "made a good case" for having celiac, having researched it so much and gathered so much "evidence".

Kate,

After negative blood and endoscopy tests, my GI and PCP doctors diagnosed me as Positive for Celiac because of the evidence that you mentioned in your posting. There was just too much proof after going on the gluten-free diet for it NOT to be Celiac.

Since you've been gluten-free for a while, your likelihood for a false-negative on the endoscopy is high. You may want to reconsider the need for it at all. If the evidence is overwhelming and your doctor is ready to make a diagnosis based on that, do you need the endoscopy results?

[HouseKat]

Kate,

After negative blood and endoscopy tests, my GI and PCP doctors diagnosed me as Positive for Celiac because of the evidence that you mentioned in your posting. There was just too much proof after going on the gluten-free diet for it NOT to be Celiac.

Since you've been gluten-free for a while, your likelihood for a false-negative on the endoscopy is high. You may want to reconsider the need for it at all. If the evidence is overwhelming and your doctor is ready to make a diagnosis based on that, do you need the endoscopy results?

He says that if I do have celiac he wants me to see a dietician, and for that to be covered by insurance he has to be 100% certain of the diagnosis.

When I talk to the GI doc if he talks sense and says that there's no point in doing an endoscopy now that I'm gluten-free, that's fine with me. If he acts like it doesn't matter one bit that I'm gluten-free now, I'll know that he really doesn't know what he's talking about, and I think I will refuse the endoscopy. I don't want to do the endoscopy if it's going to "prove" to them that I don't have celiac, because these guys don't know their stuff. If my primary care doc still needs confirmation, maybe we can do an Enterolab test instead.

Also, I have talked to my sister about having my three nieces checked soon. My biggest concern is for my oldest niece who is about to turn 10. I look at her, and I see me at that age: bloated belly, dark rings under the eyes, frequent diarrhea, etc. Maybe if one or more of my nieces tests positive, my being surrounded by close relatives with official dx (grandfather, aunt) will be enough to convince the doctors.

Kate

[Trillian]

When I talk to the GI doc if he talks sense and says that there's no point in doing an endoscopy now that I'm gluten-free, that's fine with me. If he acts like it doesn't matter one bit that I'm gluten-free now, I'll know that he really doesn't know what he's talking about, and I think I will refuse the endoscopy. I don't want to do the endoscopy if it's going to "prove" to them that I don't have celiac, because these guys don't know their stuff. If my primary care doc still needs confirmation, maybe we can do an Enterolab test instead.

Kate,

I'm lucky that even though my blood and biopsy tests were negative, both my GI and primary care doc diagnosed me with Celiac based on my reaction to the gluten-free diet. The "proof" was in the diet, not the tests.

Regarding the dietitian, I'm fairly new to the Celiac-thing. I went gluten-free in September. When I did, I read everything I could about the diagnosis and the diet. I found a lot of good advice on this forum and I bought a few books about Celiac. What I found about dietitans was that all are not created equal. Many don't know anything about gluten-free diets. Some know little. Some have Celiac or know someone who has it. Some have tried the gluten-free diet so know how hard it is.

Many people on this forum suggest that it's easier and more accurate to find out about the diet from other people who have celiac disease - everything you need to know is here.

But... if your insurance will pay for it, then make sure that you interview your dietitian before you go and see her. Be sure she knows about Celiac and the gluten-free diet.

Good luck!

[HouseKat]

Kate,

I'm lucky that even though my blood and biopsy tests were negative, both my GI and primary care doc diagnosed me with Celiac based on my reaction to the gluten-free diet. The "proof" was in the diet, not the tests.

Regarding the dietitian, I'm fairly new to the Celiac-thing. I went gluten-free in September. When I did, I read everything I could about the diagnosis and the diet. I found a lot of good advice on this forum and I bought a few books about Celiac. What I found about dietitans was that all are not created equal. Many don't know anything about gluten-free diets. Some know little. Some have Celiac or know someone who has it. Some have tried the gluten-free diet so know how hard it is.

Many people on this forum suggest that it's easier and more accurate to find out about the diet from other people who have celiac disease - everything you need to know is here.

But... if your insurance will pay for it, then make sure that you interview your dietitian before you go and see her. Be sure she knows about Celiac and the gluten-free diet.

Good luck!

I agree with you 100%. If they can send me to a dietician who knows something about Celiac and gluten-free diets, I would like to go, because I'm sure there's room for improvement in my current diet, but if the dietician isn't knowledgable about these issues, I'm not going to waste my money, even if it is only a $10 co-pay. And if they try to send me to the same dietician who keeps telling my diabetic husband that he needs to eat more carbs, I'm going to tell them where to stuff it.

Kate

[HouseKat]

The good news is that he has referred me to a GI to see about getting an endoscopy. The bad news is that the GI doc that I'm going to see is the same guy who did my colonoscopy a few months ago, and was a bit of a jerk. The GI doc had a cancellation, so I'm going to see him this Friday. If he gives me the run-around, I'm going to see if I can see a different GI doc.

So, I saw the GI doc this afternoon. He realizes that me being gluten-free for weeks now makes the endoscopy less certain so he doesn't want to go that route. While he knows more about Celiac than my PCP, he's no expert. Essentially, we struck a deal: he wants me to eat gluten for the next two weeks so he can run the blood panel on me, I agreed with the stipulation that he throw in the DNA test and prescribe me Lomotil so I can control my symptoms a bit. Two weeks from today I will have blood drawn to be sent to Prometheus labs for the following tests: tTg IgA, EMA IgA, Total Serum IgA, AGA IgA, AGA IgG, and HLA DQ2/DQ8.

Kate

[Trillian]

So, I saw the GI doc this afternoon. He realizes that me being gluten-free for weeks now makes the endoscopy less certain so he doesn't want to go that route. While he knows more about Celiac than my PCP, he's no expert. Essentially, we struck a deal: he wants me to eat gluten for the next two weeks so he can run the blood panel on me, I agreed with the stipulation that he throw in the DNA test and prescribe me Lomotil so I can control my symptoms a bit. Two weeks from today I will have blood drawn to be sent to Prometheus labs for the following tests: tTg IgA, EMA IgA, Total Serum IgA, AGA IgA, AGA IgG, and HLA DQ2/DQ8.

Kate

Kate,

I'm glad that you've gotten a plan that you're happy with. Good luck with the tests.

[HouseKat]

Kate,

I'm glad that you've gotten a plan that you're happy with. Good luck with the tests.

Well, I lasted four days then had some of the worst Celiac diarrhea I've ever experienced for eleven hours last night. Called the doc this morning, he had me come in for the blood draw and I'm gluten-free again. Now to wait for the results.

Kate

[ravenwoodglass]

Well, I lasted four days then had some of the worst Celiac diarrhea I've ever experienced for eleven hours last night. Called the doc this morning, he had me come in for the blood draw and I'm gluten-free again. Now to wait for the results.

Kate

Hi Kate, I hope you are going to be gluten free no matter what those gene tests say. If they are only looking for the two 'celiac' genes there may be other gluten related genes that they miss. Enterolab can do gene testing and stool tests for antibodies and you don't have to do a gluten challenge to do them. They also look for the 'gluten intolerance' genes as well as the technically celiac ones. Gluten Intolerance does just as much damage as celiac, many feel it is a subset of celiac (or vice versa) but most US doctors are even less aware of it.

[HouseKat]

Hi Kate, I hope you are going to be gluten free no matter what those gene tests say. If they are only looking for the two 'celiac' genes there may be other gluten related genes that they miss. Enterolab can do gene testing and stool tests for antibodies and you don't have to do a gluten challenge to do them. They also look for the 'gluten intolerance' genes as well as the technically celiac ones. Gluten Intolerance does just as much damage as celiac, many feel it is a subset of celiac (or vice versa) but most US doctors are even less aware of it.

Yes, even if the docs are not convinced, I am. I'm on my third day gluten-free again and I feel great.

I realized today that what's really driving me to get an official diagnosis is my nieces. I know that if I have an official diagnosis it will make it easier for my sister to convince a doc to test her girls. I'm pretty sure that her nine y.o. has it and I have suspicions about the 7 y.o. The 2 y.o. hasn't shown any symptoms at all, but we all know that that doesn't mean she doesn't have it too.

Kate

[Fiddle-Faddle]

Am I crazy?

I have never before been tempted either to lie or to tell someone to lie, but--

If the only thing holding a family member back from even considering that they might have celiac is the lack of an "official" diagnosis, then why not say that you do have an "official" diagnosis????

If you have a positive dietary response, then that is truthfully an official diagnosis, anyway.

[HouseKat]

Am I crazy?

I have never before been tempted either to lie or to tell someone to lie, but--

If the only thing holding a family member back from even considering that they might have celiac is the lack of an "official" diagnosis, then why not say that you do have an "official" diagnosis????

If you have a positive dietary response, then that is truthfully an official diagnosis, anyway.

It's not my sister who needs the convincing, it's the doctors. I asked every doctor I had for 15 years if I might have celiac and every one of them blew me off and refused to do a simple test. (I was so giddy when the GI doc finally wrote out the orders for my celiac blood tests that I took a picture of the paper.) The doctor will have a harder time dismissing her concerns if she can walk in there and tell him that her sister has been confirmed as having it.

Kate

[HouseKat]

So, I just got back from the GI doc. He said to me, "You definitely do not have celiac disease." He bases this on test results - which state clearly, "Results do not exclude a diagnosis of celiac disease" - taken when I had been off gluten for three months and back on for only four days.

Here are the results:

AGA IgG: 1.5U/ml

AGA IgA: 0.8 U/ml

TTG IgA: 0.6 U/ml

EMA IgA: negative

Total IgA: 202 mg/dl

Alleles detected: HLA DQA 1*05 detected

DQ Genotype: DQ2-, DQ8-

I'm through with the docs. I feel great off gluten and miserable on it. That's all I need to know.

Kate

[Fiddle-Faddle]

#1) Your doctor is an idiot. Being gluten-free for as long as you were totally invalidates the test, and he should have known that.

#2) Dietary response confirms you have it, period. You can tell your sister that; you can also print out a bunch of stuff from this website (including this thread!), and give it to her.

If it makes it any easier for her to consider, I have 2 gluten-free kids and one gluten-eating kid (she eats school lunches). I cook gluten-free for everyone, and nobody has complained yet. And I only spend a small amount of extra time in the kitchen compared to before going off gluten. I make pizza, bread, cakes, cookies, pancakes, muffins, whatever, and even their friends say everything tastes good. In fact, I have taken to hiding the cookies that I bake because their friends gobble them up and then I don't get any!!

And the kids' tummy aches, eczema, bed-wetting, etc. is GONE GONE GONE!!!!