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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 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

We Need To Start A Thread On Stupid Stuff Doctors Say!
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This was years ago, but the only thing off during the testing at a yearly physical was extremely low cholesterol levels. Despite that my doctor asked me if I was a vegetarian and my answer was no, and that I had never been, his treatment recommendation was "Eat more steak." and he sent me on my way.

For years I complained that I had abdominal pain. I can't tell you how many times I've been tested for the same three STDs without the doctors telling me that they are going to run the tests, if I've been tested before, or if I've done anything to acquire an STD. Most of the time, I find out that they've run the test when I get the bill for the lab work! Of course, that is better than the doctor who insisted that I must have been raped.

I have dozens more, but they are all pretty depressing and I don't want to revisit them. I have yet to find a doctor that I respect.

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My Doc humiliated me, talked to me like I was a child, and told me Celiac is an allergy to wheat. (and he's the one that diagnosed me) I feel like I did or said something wrong. Sorry, I just need to have a little pity party right now:(

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My Doc humiliated me, talked to me like I was a child, and told me Celiac is an allergy to wheat. (and he's the one that diagnosed me) I feel like I did or said something wrong. Sorry, I just need to have a little pity party right now:(

 

I started seeing doctors when I was 15 years old for severe and debilitating joint and muscle pain (among a myriad of other gloriously awful symptoms), it was ruining my life before I even really had one!  I was tested over and over again for RA (despite the several negative tests before each one, doc thought, well, let's try ONE more time...), one doctor told me at 16, it's just growing pains, you'll grow out of it.  At 18 a doctor told me, well, you're abnormally flexible (I was a gymnast for years before I hit puberty and it all went downhill from there lol) and that's the price I had to pay for that "gift".  At 20 a doctor I hadn't seen before put down her notes, looked right at me and said, "I'm not prescribing you any narcotics, so know that before we proceed"...the best part is I wrote on my medical history form, I don't take opiates because I can't stand the effect they have on me...  The last doctor I saw before I gave up and researched, reached out to the gluten-free community and then ultimately went gluten-free on my own, well, the last doctor responded to my multiple requests to be referred to a GI specialist for testing (my insurance required that darn referral) by saying, "you're more likely to die in a plane crash than have celiac, that's definitely not whats happening here.   You just have fibromyalgia and IBS and depression and ADHD, have 6 prescriptions and call me in the morning."  ...well, that last part wasn't a direct quote, but pretty much.  I've pretty much given up on doctors for help diagnosing my issues, I get my anti-depressant/ADHD meds from him every month and call it a day.  Western medicine, by a large majority, is a straight up joke!! I'm coming up on 4 years gluten free and have never felt healthier in my life, so they can take their "clinical" diagnosis and shove it you know where, no one wanted to help me when I needed it so I fixed the problem before they got around to testing me for it.  Absurd!

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My first real experience with a dr (aside from check-ups) was when I broke a finger as a 7 year old and my pediatrician told us it couldn't possibly be broken because I didn't seem to really be in pain, and x-rays "weren't worth it." so I walked around with a broken finger for 6 weeks until we finally went back to see an orthopedist since it still hadn't healed...and I have to say docs have been pretty consistent in disappointing me/meeting my VERY low expectations since then : )

 

I do give a lot of credit to the PCP i went to see who thought to test me for celiac this past after I told her that I was having lots of stomach pains and trying to eat healthy by "eating lots of whole grans," whoops. But minus 1000 points for when the results came back she called to tell me i "tested positive for gluten" and that I should stay away from it for maybe a year and then "I could probably go back to eating gluten again." Thankfully I'm cynical about drs that I asked her to see the actual results, researched the tests online and emailed her back to ask if the tests meant celiac disease, and if so, doesn't that mean for life? She basically answered me back with an "ummm..." and suggested I go see some random GI who could "answer all my questions." I'm trying to get the nerve up to send her a good medical book on celiac with some passages highlighted, and a note on the inside asking her to please not give her patients advice that could kill them, in future... but I know others have had much worse experiences.

 

My slightly uplifting stupid dr story was a few years ago - after going in to an ENT to find out why i was getting constant shooting pains through my nose (not to mention sinus infections, migraines, etc), the very lovely, intelligent dr and had me do a CT that found I had a giant, POINTY bone spur stabbing into the inside of my nose. Unfortunately I moved before I could have him do the surgery to remove it, so I then shopped around 3 different surgeons who all told me that the bone spur couldn't be causing any problems for me, that it was most likely allergies or all in my head or take your pick of condesceding things Drs like to say to 22 year old women.

 

The uplifting part, though, is when I finally did find a doc who was "willing" to humor me and take out the bone spur, and I came back to tell him after how ridiculously better I felt, he looked at me and said, "Huh, maybe I should stop telling all my patients this won't help them." So, progress? Or baby steps, at least? : )

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      When asking if there was a test to see if I was lactose intolerant the physicians assistant's nurse could hardly tell me the response from the physician's assistant with a straight face. She said to tell you to drink a quart of milk and see what happens. :) I immediately said I am not going to do that!

       I haven't actually got much help from the doctors unfortunately.

That sounds like my doctor, he refused to any kind of blood work and told me if it makes me feel better than just do it. Needless to say I'm looking for a new gp. I told my endo that gluten free foods seem to help my blood sugar, and he said that I was sensitive to gluten. My peditrist told me to eat gluten and a month later, no energy, dark rings under my eyes and the neuropathy that had been reversing was back!

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    • Can you tell me if my symptoms can be caused by gluten intolerance? burning sensation in mouth (gums, lips) quickly rising blood sugar after eating gluten, then high heart rate I only eat gluten once a day. Later in the day, blood sugar won’t rise as much, but also goes down too much, despite eating a good combination of protein, carbs, veggies. No matter if I eat less or more. burning esophagus burning stomach stool that passes so quickly that I have bad cramps for a while afterwards and feel nauseous often joint pain itching burning skin constipation ringing in my ears nightmares  stiff muscles, especially in my arms anxiety after eatng gluten temper tantrum after eating gluten (crying, anger, anxiety, ocd thoughts) hunger after eating gluten; sometims for hours, even at night I am feeling so desperate. I had blood tests and biopsy and it showed no celiac disease. I do have symptoms of itching, burning mouth, high heart beat, nausea shortly after eating gluten, so I know I am sensitive. I tried to stop gluten and then got such bad hypoglycemia, that I did not know how to continue. So I tapered slowly. But in the meantime, not really getting better. The hypoglycemia is now worse and seems to have to do with my hormonal cycle, which is also messed up. Tryng to stop gluten actually worsened pre-existing mild hypoglycemia. Also when teying to stop, I felt very dizzy, as if my blood sugar was too low all the time (couldn’t measure, no meter back then). I got very anxious, a lot of itching, my menstrual cycle got messed up, pain in my calves and cramps in my feet. When I cut out a small bit, I had it milder. Especially the dizzyness, brain fog and not being able to think clear got better. Can I expect the hypoglycemia to get better?  I am so fed up with feeling sick all the time. But I am afraid too, what will hapoen when I stop, as I know the last time I tried was bad.  Thanks in advance for taking the time to answer my questions. Kirsty
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