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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Why Aren't Doctors Up To Speed?
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31 posts in this topic

Recently, I got my genetic testing back for celiac. It was positive. I wasn't surprised, and since I don't know my family history, it was nice to have that piece of the puzzle in place.

I had gone gluten free last April with my daughter, and after 2 days, I started to feel better.

But, in 14 years, I went to see probably 8 to 10 different doctors - MDs, NDs, nutritionists. In all cases, they told me I was sick because I had had my gall bladder out. One of the doctors even had a record of me being there 6 years earlier asking the same question. Back then, they wanted to do a colonoscopy. I didn't take them up on this offer!

Shouldn't doctors, specifically GI doctors, know about celiac? No one in all that time mentioned it. And to prove I had it, they wanted me back on gluten for two months. Another offer I turned down.

What frustrates me is that a.) I feel better off gluten and b.) I have the gene for celiac and c.) my daughter has celiac -- but the doctors won't say it's celiac because I won't do the endoscopy. Arg!

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It is frustrating, to put it mildly, when we have been sick for so long and no doctor even thinks to test us or opens their mouth and tells us that many times the tests have false negative rates. Even when we go gluten free and the hordes of health issues resolve they still want to poison us for months to give us the 'official' diagnosis that is obvious in our return to health.

I don't know why doctors are not more up to speed on how many celiacs are out there. I don't know why doctors still think of celiac as a GI disorder either since it can impact so many body systems. I wish they would wake up and realize that their patients are not stupid, nor do we want to be sick, celiac is not just nerves, and yes we are capable and willing to go through all the trouble of keeping ourselves safe. We don't want pills to control symptoms we want to be well.

I feel I have gotten the best revenge possible. I rarely need doctors anymore and certainly am not keeping the immodium and pharmacutical companies in business any longer.

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Laziness. That's what I attribute it mostly to. I was unbelievably lucky to have a GI that diagnosed me immediately. It helped that I kept a food journal for a few weeks beforehand (pasta, bagels, pasta, bagels, LOL). But the more I go see doctors, the more I'm convinced the majority of them (not all) are too dang lazy to put the effort in to get an accurate diagnoses.

Point in case: I've had a sore throat for about five weeks. Normally, not a big deal, but with my celiac and other medical issues, I went to see our family doctor. What does she do? Sends me to get an CAT scan. Really? For a sore throat? Needless to say, it showed nothing, but can't wait to get my bill for that one. Two weeks later, my sore throat is gone. Ugh.

I'm with you Raven. The less time and money spent on doctors and drugs, the better.

Gluten Dude

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I've had better luck with teaching Dr.s or hospitals. They students are a lot more likely to pay closer attention to your history and symptoms. At least in my experience. I saw numerous Dr.s over 10+ years, so many symptoms and issues. It wasn't until I went to a Uni Dr. that they finally diagnosed me. They actually used the slides from a previous biopsy and made the diagnosis. One that another Dr. or lab had said was negative.

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The "biopsy as a gold standard" is just that. How the doctors make their gold. Even if all the other symptoms line up perfectly down a checklist, you have the genes, and a family history, unscrupulous GIs will hold off until you shell out for the endoscopy. Something many of us just aren't capable of or willing to do when we otherwise know what the issue is!

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To me it's easy Just follow the MONEY the only way to feel better is to quit eating the food's that botter you there is know medicine to fix it so then they can't make any money from you having to keep coming back to see them, Also the drug company pay for all or most of there schooling after they become doctor's and when i was seesing my GI doc you sit in his waiting room and everybody that came out of his office came out with a free sample pack of nexiuam.

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The "biopsy as a gold standard" is just that. How the doctors make their gold. Even if all the other symptoms line up perfectly down a checklist, you have the genes, and a family history, unscrupulous GIs will hold off until you shell out for the endoscopy. Something many of us just aren't capable of or willing to do when we otherwise know what the issue is!

I love the way you phrased that! "How the doctors make their gold." I was shocked when a pediatric gastroenterologist wouldn't diagnosis my son after positive blood tests and a positive genetic test. He said the diet was "too hard" to do for the rest of his life and he would "only diagnosis with a positive endoscopy even though he was totally positive that my son had celiac disease." When I didn't show up for our next appointment he called to ask why and I told him that I found a doctor who didn't feel it was medically necessary to do an additional (and invasive) test when we already knew my son was celiac!

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I've met with an MD/ND here in the Twin Cities, MN, area who I wish I would have seen sooner. He thinks everyone has celiac, to some degree, and he called our local GI doctor franchise "a colonoscopy factory". I appreciate his irreverence! He also recommends the paleo diet. I'm starting to investigate...

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There is also a vacuum regarding knowledge of celiac and other food intolerances in the psychiatric field. I was treated for ADD, depression and anxiety and nobody ever asked a question that could have suggested gluten. They are unbelievably uninformed.

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The vast symptoms make it hard to diagnose without the biopsy. I get why they want it, but no way I want to regluten just for the test. Still, why bother having them put it in writing? it just goes on your insurance and if you lose it and need new insurance, it might cause issues. Since there is no surgery or meds for it, my decision was not to bother with it. I do not even mention it to a doctor unless i have to.

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Some of us are from countries where we have medicare/NHS and they still won't diag without a biopsy. Actually here you need a biopsy no matter what. The paed GI was saying today that it takes so long for anything to change in the medical community - partly because noone ever agrees about anything. I wonder how long it'll be before we start seeing the new biopsy testing where you don't have to do the challenge- a decade probably :(

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Yes, this is definitely one disease where the patients are country miles ahead of the medical professionals when it comes to diagnosis. It is really a pity that some folks absolutely have to have the dignosis because we know that we have to be gluten free. It is only those who are going to be impacted by the educational systems that really need the piece of paper to get them special dispensation from "the authorities", or those who can't do it without someone telling them to, that need the official imprimatur.

But there are still diseases out there that no-one knows anything about. I was asked by a physical therapist :o this summer, has anyone ever told you that you have ____x____ and I said :unsure:No??? Turns out i do and it explains so much that I never even knew how to ask about and it just blows my mind. Blasts celiac into a cocked hat :huh: Maybe there is just too much to know to be a doctor????

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I agree most folks in the medical community are pretty clueless. It took me almost a year to find a good gastro. He actually told me that I know more about Celiac then medical students, scary huh. We have to be advocates for our own health, and keep looking for doctors who will take proper care of us. Take care.

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I've met with an MD/ND here in the Twin Cities, MN, area who I wish I would have seen sooner. He thinks everyone has celiac, to some degree, and he called our local GI doctor franchise "a colonoscopy factory". I appreciate his irreverence! He also recommends the paleo diet. I'm starting to investigate...

Can you tell me who this doctor is? My doctors (mine and daughter's pedi) have been very supportive, but still misinformed...I'm the one with all the information. If you don't want to post his name, can you send me a message. TIA.

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Maybe there is just too much to know to be a doctor????

There is a lot to that statement. I think one of the problems is that celiac can be so multisystemic. Many doctors when stumped will send us off to this specialist and that specialist and each on only looks at symptoms related to their specialty. They never get together and realize that all the different syptoms they are looking at all are related to the same disease.

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but when you're sitting in a GI's office and they're telling you all sorts of wrong information about Celiac, or telling you you don't have Celiac even if you feel better not consuming gluten, so go ahead eat it anyway, there's just something inherently wrong with that!

It's really very frustrating when you just want answers and you go to the people who are supposed to know, and they haven't a clue. And when you give them the list of your symptoms and tell them what you think it may be, they just smile and nod and try to shoo you out of the office because they think you're a hypochondriac.

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I was talking to someone in nursing school at our local medical college about a new building that was being constructed. It is being called the "Integrative Medicine Building." I asked her what that meant. She explained that researchers will come up with a better way of treating someone but there's a problem in that it takes 10 to 20 years for that method to be put into common practice. The issue is that doctors learn to do it one way in medical school. This new way comes out and it's not what they're used to, so they don't adopt it. But all the students in medical school learn the new way. So the new treatment doesn't take hold until all those students graduate and start practicing medicine. The point of integrated medicine is to try and get the new procedures out there in a shorter period of time through training both current doctors and medical students.

I think a lot of this applies to Celiac Disease too. When our current crop of doctors were in medical school they probably learned very little about Celiac and about the link between health problems and food. Hopefully the next generation of doctors coming out of medical school will have more knowledge on the subject. Plus I think the younger doctors are more open to combining traditional and naturopathic methods.

I took my son to his pediatrician yesterday for Celiac testing. I asked her if she had a lot of Celiac patients. She said she had a few but was adding more and more as the awareness of the disease grew.

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Unfortunately there are a lot of useless GIs when it comes to Celiac Disease. They know nothing about it, or if they do, it's very limited information and often times, misinformation. I saw a couple here in my town and they said things that were so ridicilous and ignorant that it just blew my mind. It is very frustrating because you would think as GIs that they would know more about this condition, but most don't know crap. I have to go up to Chicago (which is a 2 1/2 hour drive from where I live) to see someone because no one in my town has a clue.

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My GP said that they spent an entire 7 minutes on coeliac disease throughout their entire medical degree. So that explains normal drs - but you'd think that GI's would know more. My mum's GI was convinced she had bowel cancer and only that the registrar on the day of her biopsy thought to take some extra biopsies to check for Coeliac that it was found. Otherwise it wouldn't have even been checked. I then went to him with my myriad of complaints, and other autoimmune problems and a celiac mother who is his patient and he still didn't think I was coeliac - no way no how :blink:

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I think the basic problems are continuing education and arrogance. The arrogance comes with the medical degree which confers such superiority of knowledge :P Continuing medical education is a requirement of licensing, but what does it really consist of? Sponsored by drug companies, held at juicy resort places to lure attendees, and what it really amounts to is clipping tickekts on the way out the door to the golf course and the best restaurants, and going home with a package of information which is filed in a file drawer for later reading. There is no evidence that anything is actually absorbed at any of thse conferences, conventions, CME classes. There was just in the last couple of years a big push by the gastroenterology association to bring their members up to speed on celiac disease at its conferences :o Has any of us noticed any benefit from this? I don't think so. Most doctors know what they came out of training with unless they have been hit over the head with something else. MHOO

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beebs, you are right about that. I know a doctor and he said that he was only lectured about celiac disease one in his entire doctoral degree and that was for less than 30 minutes. Pathetic.

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Yes - Dr. Chris Foley in Vadnais Heights. His clinic is called Minnesota Natural Medicine. He books out pretty far so get on his calendar and plan around it! I'd love to hear how it goes for you.

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Yes - Dr. Chris Foley in Vadnais Heights. His clinic is called Minnesota Natural Medicine. He books out pretty far so get on his calendar and plan around it! I'd love to hear how it goes for you.

Thank you so much! I bet he does book out. Right now my 8 year old and I are moving along pretty nicely. I have given up on doctors when it comes to gluten free. I may try and make an appointment for my daughter sometime in the future because she is diagnosed "gluten sensitive" which is a term I hate because she is not sensitive to gluten...she is 100% intolerant. But even though she's only 8 I'm worried about navigating the school system, especially college without more of a strong diagnosis. I'm beginning to wonder if I just send her to the U of M and put her up in an apartment, but I'd hate for her to miss out on the college experience. But not as much as I'd hate her to be taking midterms or finals after a glutening (or dairy/corn).

I'm going to research him a little bit. Again, thanks!

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I have fibromyalgia and am self-diagnosed gluten intolerant. This conversation thread could easily transfer to a fibro message board, because most doctors don't understand or recognise fibro, either.

There is something terribly wrong with our western medical system, when diagnosis is made to be so difficult, invasive and time consuming and expensive, and when doctors don't listen to patients who know their own bodies.

Fortunately, both fibro and gluten free have become more 'in vogue' lately. People don't look at me quite so strangely anymore when I mention either one. However, it's annoying when they assume I'm going along with a fad. This is no fad for me, it's a life-saving way of life! :rolleyes:

Fortunately, no one has suggested I do a gluten challenge for the sake of a diagnosis. I'd tell them "no thanks", and walk away laughing.

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I think a lot of this applies to Celiac Disease too. When our current crop of doctors were in medical school they probably learned very little about Celiac and about the link between health problems and food. Hopefully the next generation of doctors coming out of medical school will have more knowledge on the subject. Plus I think the younger doctors are more open to combining traditional and naturopathic methods.

Sadly I have talked to two people (not a big sample but telling). One of my friends who just started her residency when I asked her what she knew about celiac and she told me that it was a disease you only have to look for in children. The boyfriend of my friend who just finished his residency in GI said that anyone who hasn't had a biopsy and thinks they have celiac should go back on gluten to get the testing as way too many people think they have celiac who really don't have any problem with gluten. Being this is what people are learning in med school right now, I'm not too hopeful about the current generation of doctors knowing much about celiac.

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