• Ads by Google:

    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:

       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   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

Why Are Drs So Hesitant To Test?

Rate this topic

Recommended Posts

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. 

Share this post

Link to post
Share on other sites
Ads by Google:
Ads by Google:

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!

  • Upvote 3

Share this post

Link to post
Share on other sites

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. 

  • Upvote 1

Share this post

Link to post
Share on other sites

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. 

Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites
Ads by Google:

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. 

Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites

Ads by Google:

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!!!

  • Upvote 1

Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    Maria Jose
  • Popular Now

  • Topics

  • Posts

    • Haha, Ennis that's given me no excuse not to make it now!  I've been faffing around about it but now I think I must try it out! They honestly don't sound too hard to do either. The Keto Chocolate frosting I think I can make today if the avocados are ripe enough. I just got some maple sugar and maple syrup (I know I'm bad) but I'll look at the sugar free one. I know I don't feel too well if I eat pure sugar but I couldn't help it. I think I have everything else and it sounds super good. Thanks so much Ennis!!
    • LONG POST incoming I got my cheese sauce recipes compiled and going to throw in my frosting....and yes I normally eat it by the spoon, I make a sugar free version with lakanto. 4 Of my Favorite Cheese sauces
      Will list the ingredients for each one, they all use the exact same cooking method which will follow.
      Super Sticky Mozzarella
      1/2 cup of cashews soaked over night and drained
      1 cup water
      1 tbsp Nutritional Yeast
      3 tbsp Tapioca Starch
      1 tsp Apple Cider Vinegar
      1/4 tsp garlic
      1/2 salt Poor Mans Mozzarella
      3 tbsp coconut flour
      1 cup Unsweetened Plain Cashew or Almond milk (refrigerated version)
      2 1/2 tbsp Tapioca Starch
      2 tbsp Nutritional Yeast
      1 tsp Apple Cider Vinegar
      1/4 garlic powder
      1/4 salt
      1/2 tsp Psyllium husk unflavored Cheddar
      1/2 cup of cashews soaked over night and drained
      1 cup water
      1/4 cup Nutritional Yeast
      2 tbsp Tapioca Starch
      1 tbsp Apple Cider Vinegar bit more if you find the bite lacking and for a sharper one
      1/4 tsp garlic
      1/2 salt
      1 tsp Annatto
      1/2 tsp Psyllium husk unflavored 1. Blend all the ingredients for you cheese flavor very well in a blender
      2. In a sauce pan heat over medium high stirring CONSTANTLY for 5-10 mins. First it will start forming clumps then it will thicken up. Remove from heat and stir a bit longer til it cools to prevent burning. Sometimes I use Lemon Juice in them in place of the vinegar, this really depends on your preference to a more citrus blend or a more bite in your cheese. Any feed back or blends you do with them? Would love to hear about some suggestions for blends. Vegan Queso 10-12 rounds of eggplant, sliced 1/4-inch thick 1 whole egg plant
      spray oil
      1 1/2 cups unsweetened original almond milk (or milk of choice)
      4-6 Tbsp nutritional yeast
      1/2-1 tsp finely minced fresh garlic
      1 to1 1/2 tsp cumin
      1 1/2 tsp chili powder
      1/4 cup chunky medium salsa, slightly drained 1. Slice your eggplant into thin rounds just under 1/2 inch (not quite 1/4 inch), then sprinkle both sides of the flesh with a little sea salt and arrange in a colander to help draw out some of the moisture and bitterness. Let set for 10-15 minutes, then rinse with cool water and thoroughly pat dry between two clean towels.
      2. Preheat oven to high broil and place an oven rack near the top of the oven. Arrange the dried eggplant rounds on a baking sheet lightly spritzed with non-stick spray and spray both sides of the eggplant with a little more oil. Sprinkle with a very small amount of salt.
      3. Broil on high for 2-3 minutes on each side, watching carefully as to not let them burn. Flip at the halfway point to ensure even cooking. Once the eggplant appears tender and both sides have golden brown color, remove from the oven and wrap loosely in foil to steam.
      4. After a few minutes, unwrap and peel the eggplant skin away. It should come right off. If you pack your roasted eggplant into a 1-cup measuring cup, it will be 1 cup.
      5. Place eggplant in a blender with the 1 1/2 cups almond milk, 4 Tbsp nutritional yeast, minced garlic, cumin, chili powder and blend on high until smooth and creamy. Taste and adjust seasonings as needed. I added a pinch more garlic and a little more nutritional yeast. To thin, add more almond milk.
      6. Transfer to a small saucepan and warm over medium to medium heat until slightly thickened and bubbly – about 5 minutes. The longer you go the thicker it will become. (Keep Stirring)
      7. Once hot and thickened, remove from heat and stir in DRAINED salsa or Rotel. Don’t put the liquid in or it will make it runny. Pour into a serving dish and top with a little smoked paprika and hot sauce for flavor/color. (If it looks like it has little clumps in it you need to blend it more) I have had success using both cashew and almond milks for this, I also found adding a tsp of flour like coconut helps with the thickening and richness.I personally like adding a bit of annatto or 2-3 pieces of sun dried tomato when blending to give it a deeper orange color. GOES GREAT with Roasted Orange or Red Bell Pepper This dish was inspired by Baba ghanoush served at a small restaurant in Dallas.

      Keto Chocolate frosting
      2 large ripe avocados
      1/2cup cocoa powder
      6-8tbsp Lakanto Sugar Free Maple
      1/4 tsp vanilla extract
      pinch of salt Thin out with a bit of almond milk if needed to desired consistency
      Blend all in a blender or a food processor until completely smooth.
    • I remember on here that they are OFTEN grown on something that contains gluten. I watched a video before but I can't remember the details. The thing is they are supposed to be super nutritious and also they just taste really good. They definitely were making me sick about a year ago but I didn't know about the gluten. If I go to the grocery store how can I know? Are there certain kinds that aren't grown with gluten or do I just need to contact the growers?  
    • I never heard of goat butter but I guess I could make it if I had raw goats milk. Which I don't at the moment. I'd have to see if anyone has goat's milk kefir, billions of probotics would be good though! I've heard of ghee but I'll have to look up how to make it. It's interesting that you are okay on those items in moderation even though you can't have cow's milk. I'll have a look around locally and see what there is. I think I did read that when you make cheese or butter (or ghee) it greatly lessons the lactose. If I do try it it will be only really small amounts. Anyways, that's what I wondered, that some people can't have cows milk but can have goats milk products. So that's really interesting to me.
    • I'm not sure if it's lactose. If I experiment and still feel awful from it it might be that. And I want to try making those nut cheeses sometime soon. I ordered some cooking stuff and mesh strainers to try and make almond milk so maybe I'll try making some cheese at the same time. Coconut cheese sounds intriguing. I'll look that up too. Nut butters I over did and then didn't feel so great but that was over 6 months ago so I could try a little and see. I could just start with small amounts. I think too my stomach just couldn't digest fat at all before and it seems like it's a bit better now. Avocado I can do now! I couldn't before and I'm so glad it's back. But I've only sliced it into salads so far so avocado ice cream and guacamole sound crazy good to me right now. Anything I can make ahead and keep for a few days is good too. Avocado frosting - can I eat that just with a spoon? I know the thing about having milk from animals. I don't know if it really helps but when I have had any I try to find somewhere where it's not mass produced. Like there is a family near by that has some goats and you can have milk but they only do that in the spring and summer. The goats seem okay but I know what you mean. And it is pretty weird if you think about it. : (  
  • Upcoming Events