Celiac Being "over Diagnosed" According To My Gyn

[SaraKat]

I just got a positive blood test last week (I am 35) after going to a slew of Dr's for different weird symptoms (non of which are classic celiac). She told me she was going to run a bunch of blood tests, so she called the next day and told me it came back positive for celiac. I was shocked and really never heard of this disease.

Anyway, I just happened to have had my annual gyn exam yesterday and brought up the celiac thing to her and asked her if it would affect my chances of getting pregnant, etc. She told me that celiac is something you really never heard of before, but now it is being "over diagnosed"! LOL I was like well, if someone is positive for it, how can a Dr really over diagnose it, it's not like they are making up the results! Anyway, she then said as long as you stick to the diet you shouldn't have any problems, she has seen a lot of pregnant women with celiac with no issues.

I just thought her comment was weird!

[GlutenFreeManna]

If anything I think it is under-diagnosed. Maybe she has just seen a lot of women with it in her office recently? It's a good thing to have your positive blood tests or else it sounds like she would have talked you out of believing you have it. Also she's not completely accurate about Celiac not affecting pregnancy. Yes, it's probably true that if you follow the diet strictly you won't have any problems, but many here have stories of really bad pregnancies and miscarriages before they knew they had gluten issues. Not trying to scare you or anything, but you might want to wait until you have been doing the diet for several months before trying to get pregnant. I have had miscarriages I believe are due in part to gluten and I'm waiting until I'm at least a year gluten free before TTC because I want to be in really good health.

[srall]

I don't understand how Celiac's could be over diagnosed? If you have a positive test you have it right? And if you do an elimination diet and you feel better, and by better I mean no more D or C, no more migraines, no more joint pain, no more brain fog...maybe you have an issue with gluten and shouldn't be eating it? I wish when I was trying to get pregnant a second time, Celiacs had been on my radar. I really believe that's why I had so much difficulty getting pregnant...and one miscarriage. I never did have another child.

I hope you have no problems getting pregnant. You are lucky you can be taking care of yourself the way your are supposed to before you try. And one of my girlfriends with Celiacs has two beautiful kids. She was diagnosed though when trying to get pg.

[TrillumHunter]

She probably watched the Today Show while she was getting dressed this morning.

Really, lots of people are seeking more of a diagnosis than IBS for their health issues. In addition to that, the Diabetes Association recommends it as a screen now.

[Ahorsesoul]

Too bad. She's probably seen a lot of patients who wanted to get pregnant but can't because they are not gluten free. In this area she is not doing her job.

[brendab]

I wish I had been gluten free in TTC, I have lost 5 babies but have 6 wonderful children but still it hurts to have lost so many.

[SaraKat]

I wish I had been gluten free in TTC, I have lost 5 babies but have 6 wonderful children but still it hurts to have lost so many.

WOW, that is a big loss. 6 kids, how amazing! Do all of your kids do gluten-free diets too?

[brendab]

WOW, that is a big loss. 6 kids, how amazing! Do all of your kids do gluten-free diets too?

Our entire family went gluten-free over 3 weeks ago and life is in some ways easier, some harder. Ya, 5 losses was difficult but most were within a week or so of finding out the new PG and one was 17 weeks with no explaination. The earlier the easier.

[T.H.]

She told me that celiac is something you really never heard of before, but now it is being "over diagnosed"!

I've met a lot of people with that opinion these days! The ones who feel like it's some weird modern disease. Or that if it was really such an issue, it would have been diagnosed before. Or the ones that think that there can't be a reason for the disease to grow more prevalent, so it must be doctors over-diagnosing.

I tend to point them towards a few facts, if I'm in the mood. One, that Celiac Disease was actually mentioned in writings from Ancient Rome - definitely not a recently 'created' disease.

Also, I point them to the two studies that recently looked at blood samples today vs. frozen blood samples from the 50's that were both tested for celiac positive signs. Both tests involved thousands of participants. Both tests were done within the last 5 years.

According to the tests, Celiac disease has quadrupled in the last 50 years. No idea why. And on top of that? Out of the modern samples, when they checked back in with the participants, only about 3% of the people who were positive had actually been diagnosed with celiac disease already.

So yeah...totally not over-diagnosed, but definitely increasing.

[SaraKat]

I've met a lot of people with that opinion these days! The ones who feel like it's some weird modern disease. Or that if it was really such an issue, it would have been diagnosed before. Or the ones that think that there can't be a reason for the disease to grow more prevalent, so it must be doctors over-diagnosing.

I tend to point them towards a few facts, if I'm in the mood. One, that Celiac Disease was actually mentioned in writings from Ancient Rome - definitely not a recently 'created' disease.

Also, I point them to the two studies that recently looked at blood samples today vs. frozen blood samples from the 50's that were both tested for celiac positive signs. Both tests involved thousands of participants. Both tests were done within the last 5 years.

According to the tests, Celiac disease has quadrupled in the last 50 years. No idea why. And on top of that? Out of the modern samples, when they checked back in with the participants, only about 3% of the people who were positive had actually been diagnosed with celiac disease already.

So yeah...totally not over-diagnosed, but definitely increasing.

That test is interesting. It seems kine of like the peanut allergy- that is on the rise too. The more and more people I tell about my diagnosis, the more I heard how everyone knows people with it. It is more common that I thought.

[JeepWidow]

I think that it is correctly diagnosed more often today than in the past and that awarness has also increased (thanks to the information age we are in).

I do think that it is still misdiagnosed, because so many doctors are completely mis informed. I had a friend who was told she had celiacs, then the doctor revised it to an actual wheat allergy, her symptom was her throat swelling shut! The doctor heard wheat and immediate assumed celiacs, because he wasn't informed. Since diagnosis I've heard many reports on why it's impossible for my family members to have celiacs, because of illogical info from their doctors. We still have a long way to go.

Perhapes the Gyno was thinking they may be celiacs because of self diagnosis on the internet.

[JeepWidow]

I do believe that it could be increasing because celiacs are living longer and reproducing more than we might have 50 or 75 years ago, so there would be more of us at any one time and more of the genes being passed along.

I guess it's good news for us :-)

[TiffersAnn]

I think IBS is over-diagnosed. Doctors usually look for the quick fix that makes their patients have to take a pill or come back to their office over and over again. Treating Celiac means that the doctor won't see you anymore because if you're eating properly, you're fine and they don't get more money out of you.

[Emilushka]

Speaking as a medical student, any time that a doctor sees a sudden rise in diagnoses (like with fibromyalgia, for example) there's a question of overdiagnosis. Doctors want to give patients a diagnosis. We like to label things. We like to have explanations.

Honestly, I think most doctors choose "IBS" as a diagnosis of frustration more than convenience. When done right, that's the diagnosis of exclusion that results from a whole bunch of negative testing despite significant symptoms.

As a medical student and also a patient, I hate diagnoses of exclusion (like IBS). I never want to give a patient a diagnosis that means that we have no way to help. That kind of thing drives me nuts.

Celiac could be overdiagnosed if the tests showed up with FALSE positives a significant portion of the time or if doctors didn't do the testing and just assumed that people have Celiac when they have digestive symptoms. Either one is possible, since the tests and doctors are far from perfect.

Saying a generalization like that, especially when one is a gynecologist (and therefore far removed from gastroenterology in general and primary care as well) is irresponsible, although everyone's entitled to their own opinion behind closed doors. I think your gyno should have kept his/her mouth shut. The testing's not perfect, the doctors aren't perfect, but we all try really hard to get patients answers they can work with. Tell your gyno to keep his/her conversation to your lady bits and contraception and let your gastroenterologist worry about your guts.

[brigala]

Honestly, I think most doctors choose "IBS" as a diagnosis of frustration more than convenience. When done right, that's the diagnosis of exclusion that results from a whole bunch of negative testing despite significant symptoms.

When I had my diagnosis of IBS in approximately 2001, it was with nothing more than a digital rectal exam and asking about my symptoms done by a nurse practitioner. No further tests were ordered. No course of action was suggested. No medication was prescribed. I was told it was IBS and I was just going to have to live with it and try to avoid foods that made it worse.

I still don't have an official Celiac diagnosis, though my family doctor 100% believes that's what I have. I tried the gluten free diet before discussing it with my doctor, and then I was unwilling to go through a gluten challenge because my results were so dramatic.

Anyway, back to the original question, I did have pregnancy complications with my first baby (IUGR with no explanation) and I now wonder whether that was due to Celiac. My second pregnancy had no complications. Both were long before I had any obvious Celiac-like symptoms (1994 & 1995). In August of this year I just had my third baby... the first since being gluten free. No complications at all. We had to use IVF but that's because my husband is sterile. She is my biggest baby yet and weighed 8 lbs 4 oz at birth. I would strongly recommend staying on the gluten-free diet for a few months before TTC. If nothing else, you want to be as healthy as possible going into your pregnancy.

[sweetpea]

That's a very weird comment! I hear about false negatives a lot more than false positives! If it's positive, you have it. I think it's just more recently being recognized, not that it's being overdiagnosed.

I conceived very shortly after I went gluten free - in like two months. My daughter is 18 months old, and I'm currently pregnant with #2 - due in early December. Although I probably should have taken time to recover first.

[Rowena]

The other reason why I think more people are being diagnosed as Celiac today as opposed to fifty years ago, is that today, we eat a lot more processed foods/fast food than people did fifty years ago. And we all know that processed foods probably are not the most cc free foods. So much of the CC issues talked about on this board are with processed foods or restaurants.

During the 1950's people still believed in the women stay at home, men work outside of the home philosophy, (although admittedly more and more women were challenging that). Because of this, most of the time the men could expect a nice hot meal on the table, filled with fresh veggies, fruits, breads, meats...etc. Nowadays, it isn't uncommon for women to work outside the home, as well as the men. And in such situations, it isn't too uncommon to throw on a pot of store bought pasta, maybe even the supposed heart healthy whole wheat pasta, and then toss on a some sauce from a jar. "Here you go honey. Sorry, I didn't have time to make dinner today. Work got out really late." Or mac and cheese for the kids. You know that Easy Mac. Or for people like my nephews, Red Baron pizza. I cringe to think how much gluten is in any one of those items.

Or how about the not so uncommon, "Man I don't have anything in my cupboards. Everyone put on your socks and shoes and coats. We're goin out to eat." And just a small look at just the typical kids menu. "Mac & Cheese. Chicken Tenders. PB&J. Mini Hamburger. Hotdog." Gluten Gluten Gluten.

[beebs]

80% of celiacs in Australia remain undiagnosed. How the heck is that over diagnoses. I swear - people in the medical field often have no clue

[Rowena]

I don't think its that they have no clue, especially doctors who are older. Its something that when they were younger no one really new about, and it was one of those things back then that was condemnation probably. But nowadays, the medical field has new and improved technology, and can find more stuff out. But as humans, its a natural tendency to be stuck in our ways. So what one doctor says can be deemed by another as overdiagnosis, merely because they don't want to change their thinking. (Plus once you have a diagnosis, doctors don't get money from you any more... )

Not that I am saying that it's right. Because, hell, like I said before, in this day and age, our diets have become decreasingly heathy with a bigger reliance on processed food or fast food, or just plain go out to eat food because I don't feel like cooking. Which beyond Celiac, is the reason that a lot of people have more medical problems today. I swear that if people just ate better, they would feel a lot better and be less likely to get sick.

[Emilushka]

Plus once you have a diagnosis, doctors don't get money from you any more...

I just wanted to take a moment to correct this misconception. Doctors can't bill insurance companies for patients without diagnoses if they come in for any kind of problem. You can either bill for "routine health screening" or "medical diagnosis". You have to have one or the other. So if someone comes in for a "sick visit" because they're having an issue, you as the doctor only get paid if you come up with a diagnosis for them. Insurance companies are insane and hate to pay doctors.

You can also bill in the future for medical management visits for that diagnosis. That's why docs can bill for hypertension or diabetes follow-up visits.

[psawyer]

I think Rowena's point was that a celiac diagnosis does not require follow-up visits. In essence, it is what the GI who diagnosed me told me: "I cannot do anything more for you. It is now up to you to follow the gluten-free diet."

[Rowena]

I think Rowena's point was that a celiac diagnosis does not require follow-up visits. In essence, it is what the GI who diagnosed me told me: "I cannot do anything more for you. It is now up to you to follow the gluten-free diet."

That is my point exactly. Or any other diagnosis that don't need follow-ups.

Though Emilushka, I would like to point out its not only on the doctor end insurance is insane... Patients needing the insurance, for them it can often be insane, especially when insurance won't cover for the good doctors or the procedures you be needing.

[Emilushka]

That is my point exactly. Or any other diagnosis that don't need follow-ups.

Though Emilushka, I would like to point out its not only on the doctor end insurance is insane... Patients needing the insurance, for them it can often be insane, especially when insurance won't cover for the good doctors or the procedures you be needing.

True ... but the doc could actually bill for follow-up for a Celiac visit, I think. My GI doc said that he normally does call people back for follow-up. I'm very sure he wouldn't do that if he couldn't be paid for it. So it's not a billing issue, it's a doc stupidity issue.

And I totally get that insurance companies are bonkers for patients. I had to fight repeatedly to get them to cover my Celiac testing and to honor my actual insurance policy. I made many, many calls. As a medical student, it's embarrassing to have incredibly crappy insurance, but that's what I've got: crappy student insurance.

I totally get that insurance companies are awful. I really think that a lot of the problems that people blame doctors for got started when insurance companies started running medicine. Insurance companies and lawyers ...

[Rowena]

My doctor just said, keep in touch. I don't need to come in. And she's done most of her stuff on email... (UGH I HATE IT) Nor does she want to do testing for vitamin deficiencies or nuthing. I'm a little upset with that. But I will find a new doctor now that I have better insurance than school insurance.

Also another thing on my mind was if you don't go to the doctor, they can't bill. Not necessarily just follow-up visits. But people are likely not to go to the doctor once they start getting better/have diagnosis. And I am willing to bet doctors know that too. Which means no money...

And as for insurance, don't get me started... suffice it to say, we have to pay for nearly everything out of pocket...

[Judy3]

Overdiagnosed.. LOL I just read an article at Mayo Clinic where the doctors there feel that it is underdiagnosed and that in reality 1 in 100 people in the US have undiagnosed Celiac. The trends show that it is becoming an epidemic in the US and they are looking for the answers to why? Is it that they ignored it before (as we see many doctors still do) or is it more prevalent? I'll be curious to see the end results of that research.