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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 Are Drs So Hesitant To Test?
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MissyShelle    1

I have been reading through these forums as if I was studying for a final and one thing jumps out at me: How many posters state that they have to convince their doctors to test them. Why is this? If we go in with the money to pay for it or insurance, why not do the test to put us at ease or possibly (as was the case for many) finally provide a definite diagnosis so that we can start finding ways to get better? 

 

In some ways, I guess I have been lucky. I started getting pre-cancerous colon polyps at age 9. So if I call my GI, he schedules a Colonoscopy immediately. I also had been seeing a great Nurse Practitioner who, when I went in with my symptoms of extreme exhaustion, did a full panel on me (not for celiacs) and found out I was low on Vitamin D and B. She started me on B-12 shots immediately. I guess I'm trying to stay optimistic that when I go in this time, she'll be open to testing for Celiacs and that my GI, if necessary, will be open to doing the biopsy. 

 

I guess it just angers me how hard it seems that we have to fight sometimes to get tests done and find out what's wrong with us or how often we are dismissed only to find out later we were right all along. 

 

Maybe I'm being too negative about it since I feel so horribly, but it still doesn't seem right that we have to argue to have a simple blood test done. 

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Hi MissyShelle,

 

Great thread! I am not sure I have an answer, but I can say what I have observed from my own personal experience.

 

1) They tell you that tests are expensive, and if they run them, they don't run complete panels. If medical health is provided not as a basic human right but as a privilege (and here the issue gets more complex than insurance only, so it's not just an American problem, though here it may be more visible), then you don't want to pay the labs, you want to pay the pharmaceutical industry. They're the ones that, ahem, hold classes in exotic islands for their doctors... so yes, tests are expensive, but also if you make a "diagnosis" that keeps the patient on lifelong medications, which after some years require medication #2 for the side effects of medication #1, then the doctor is feeding Big Pharma, saving Big Insurance's money, and therefore getting their little perks. Most honest doctors *will* tell you that they get incentives to act this way, which is how I learned about this. You make the patient live with the disease rather than trying to shake the disease off them. Chronicizing is monetizing.

 

2) Misinformation/laziness/sheer ignorance/degrees granted where the students should have been given a plow to till the land. No specification needed here.

 

3) The spinning out of control of the "psychosomatic disorder" craze, which I summarize as a great insight gone awry. They finally figured out that the mind can affect the body - which is "duh," if you think about it, since my mind exists because I have certain organs - brain above all - which just happen to be parts of my body. But then this became misinterpreted by people at point 2 as an epidemic of  "hypochondria rampans" - which was exploited by people at point 1 to make munny out of, mostly, psychotropic drugs. A quick search in the APA archives will help you figure out how many people in the US use one or more psychotropic drugs. The numbers are high enough that either the whole nation is under the attack of invisible soul-sucking zombies, or simply psychotropic drugs are being prescribed to people who do not necessarily need them. Long story short: if we believe that most people are hypochondriac, why should we test them? Just give them Prozac!

 

3.1) The latter point is further complicated by how some conditions are simply not or at least badly understood AND may mimic mental health disorders. Autoimmune conditions are a case in point. Many of them cause exhaustion, or altered moods, "brain fog," nervousness, panic attack, weight alterations etc... Obviously, it's easier to assume it's the "mind alone" to cause them, rather than the "mind as part of the diseased body" (which, as you can see, contradicts the principle itself of the psychosomatic hypothesis), as if the patient's "mind" floated around, detached from their bodies. So you don't test for celiac disease because the plaintive patient is just victim of the latest diet's fad; you don't look for lupus / arthritis rheumatoid because the patient is lazy; you don't test for thyroid disorders because the patience is a lazy pig or an annoying anorexic (this is what happened to me). You "choose" to be ill, so why bother? After all, we know that most women are "weird" in the head and blame it on their bodies, like in that times of the month, so how can you trust a woman in pain? Funnily, most autoimmune patients are - you guessed it - female. So you need to multiply the imaginary patient bias by the gender-defined bias.

 

3.1.1) Which brings us to cultural frameworks. All of the above behaviours are instances of "victim blaming." So long as we live in a world in which we believe no one should receive help because they "brought it upon themselves," we will not receive better healthcare - no, not even those of us which were sc*ewed by our genes.

 

Sorry, this may be more of a rant than an answer! Hope it is of some use though!

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Kamma    21

Butterflychaser, that was one hell of a good post.  I especially like how you described the rampant usage of drugs and the whole movement in the medical field to attribute symptoms to a mental disorder which is, of course, backed up by the pharmaceutical companies. 

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MissyShelle    1

Butterflychaser, thank you for the answers. I do agree with what you said. I know when my Mom was sick many years ago, doctor after doctor kept pushing her around to a different doctor with a new set of medications. My sister worked for an amazing OB/GYN, made one call and got my Mom in and we found out she has very advanced cancer. It didn't end there. One year in, the "tests" deemed her in remission so when she started having a "psychotic" break and complaining of intense pain, instead of running more tests and seeing if the advanced cancer had spread, they put her on a 24-hour mental health watch. After coaxing and a little yelling, the doctor ran the scan and found out the cancer had spread to her bones and brain and she was in excruciating pain. She died a few months later. During the time of her "psychotic" break, she was labeled as "drug seeking". Sigh . . . .

 

As I have stated, since I started getting pre-cancerous colon polyps at 9 with most follow-up tests showing more polyps, I'm lucky to have a G.I. Doctor that takes me seriously and is open to tests. I just hope he's as open to testing for Celiac since I am getting sicker every day. I also have a history of unexplained rashes, vitamin deficiencies and gastrointestinal issues. I've opted to not go gluten-free until the tests are run but even after only eating very little yesterday, I'm blessed with my preggo belly, pain and itching today. How can they attribute that to mental health issues? Sigh . . . maybe I should forego social work and go into medicine, ha. 

 

After reading on this board, though, I can see why more people are self-diagnosing or using home tests. 

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Part of the problem is that the symptoms they look for in celiac, (thiness, diarreah) aren't always there.  It is also considered a "rare" condition, so usually it wouldn't bear checking out .  It is also genetic, so the thought could be "if your family "doesn't have it" neither do you."   How many people do you know that would check if they had it IF it were not "so inconvenient" to treat? I believe that part of the reason people do not get checked is because the diet seems too hard to them.

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MissyShelle    1

I agree 1desperateladysaved. Even years ago when my G.I. brought it up, it never occurred to me since I attributed my symptoms to polyps and the symptoms I am having now were not present. So I went about my life and just figured, as a woman, bloating and other symptoms were part of it and just be careful what I ate. 

 

I was hanging out with girlfriends the other night. One of them is a diagnosed Celiac. She took one look at me (pale, exhausted, rash) and said "Get tested. You look just like me" I let her know that we were just waiting for the insurance because one doctor already said it's something I should consider. She also told me that until she got sick and tested, she didn't think there was a family history. Once she was Dx'd though, her mom and dad got tested. Her dad is positive but had no real signs that made him think anything was wrong. Another problem with me is that I do not know my father, so my G.I. doctor thinks a lot of my problems may stem from his side but can't test. No one on my Mom's side of the family ever had the problems I have. I hate having an incomplete medical background, but it is what it is. I sometimes wonder if that's also a reason the doctor's aren't too hesitant running tests on me when I do have problems. 

 

I also have 16 year old with E.E. and her specialists mentioned testing for Celiac's at some point is she became symptomatic. That's one of the main reasons I do want a diagnosis if I DO have it, so that I can have insurance cover my girls testing. I don't want them to suffer for years if they don't have to. 

 

Anyway, I'm rambling now. 

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Thank you, Kamma. I was on a roll yesterday night. :)

 

I hope you feel better soon, MissyShelle, (((hugs)))

 

1desperateladysaved: I often think of this when we talk about the 1% of celiac sufferers. We should have a Facebook campaign:

 

"Do you have 300 friends of FB? At least three of them are celiac. Around 25 of them may have NCGS. What? None of your buddies have problems with gluten? Then they are probably undiagnosed." It would be useful to give a face to celiac disease (or other commonly undiagnosed diseases) using social media.

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GottaSki    459

Rambling is good....sharing our experience here is good.

 

The reason many of us stick around on this forum is directly related to the theme of this thread...had ONE doctor known the actual symptoms of celiac disease of the many I went to over the past thirty years with IDENTICAL symptoms, perhaps my career and last ten years would not have been destroyed.  I am very lucky -- I have a husband that stuck by me even when he began to think it was all in my head -- when finally diagnosed he had a very tough time with his feelings of guilt over dismissing much of what I said with regard to how I was feeling over 30 years.  I forgave him -- no problem -- he stuck with me.

 

So---I answer as many questions as I can from folks that come here --- doctors are starting to catch up with us -- but they have a very long way to go.  The primary that finally diagnosed me after three years and over 50 medical tests - first dismissed Celiac Disease because I was neither child or underweight -- and she is a young physician that showed me her exact notes from med school with regard to celiac disease -- one small lecture with key points -- childhood disease that many outgrow; short stature, underweight, severe diarrhea.  None of those were my symptoms even as a child!!!

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