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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

#*@($ !#*^% Doctor!
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38 posts in this topic

Went back to my primary care doc to address my ongoing issues (mostly major fatigue, but other left over recovery stuff, too).

I actually like her because she has a background in Chinese Traditional Medicine (though she doesn't use it... but nice to know she's more open minded than most). I think three times in the appointment she apologized for the limitations of western medicine, specifically the idea that doctors 1 - look for markers you can *test* for, ie abnormal blood work, then 2 - give you a pill to make the symptoms better. She admitted there is not much they can do for things that aren't treatable with drugs. She also admitted that just because an individual is in the "normal" reference range, it doesn't mean it is "normal" or healthy for them. Of course, then she said if it's in the range there's really nothing they'll do about it. :blink:

She did order the labs I asked for to check on the things I know I've had a history with (Iron, D, B-12), and rheumatology and inflammation markers... as well as a CBC.

She also (reluctantly) signed the DMV request for temporary handicap permit for those days I just can't lug all of my stuff a mile.

She supports me seeing a naturopath and acupuncturist (though she said she wouldn't give me a referral for the latter because she *always* gets her requests rejected - need to see the physical medicine guy for that). She said she didn't know much about supplements, but if they make me feel better I should take them, citing "there's just not much research....". Yeah.

Then she did something that made me angry. They give you a printed summary with diagnosis and instructions when you leave. I know the docs are pushed to give a diagnosis with EVERY visit. She wrote on my diagnosis "Celiac Disease" (duh) and "dysthymia" (huh?).

So, while waiting in the lab to "donate" blood, I pulled out my smart phone. Dysthymia is "A chronic type of depression in which a person's moods are regularly low. However, symptoms are not as severe as with major depression"

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001916/

So, here's my issue: She didn't MENTION dysthymia or depression. She didn't ASK how my moods are. She didn't ASK if I'm low or down or if I have any depression symptoms. Not ONCE. According to the site I just linked, "The main symptom of dysthymia is a low, dark, or sad mood on most days for at least 2 years. In children and adolescents, the mood can be irritable instead of depressed and may last for at least 1 year." She certainly didn't tell me what to do about it! I did cry a little in her office. But that's what happens when I talk with a doctor about my medical troubles (that they routinely can't help). Been that way my whole life.

Do I get down? Yes. Am I frustrated with my symptoms and issues? You betcha. But, then I take a deep breath, and go do something fun. I've been screened for depression - I've seen a shrink to deal with the PTSD of the whole ordeal - he agrees that I'm not depressed. I would certainly like to know if I was, and what to do about it.... but why the #$%^ would my doc write something like that down and not even tell me about it? The more I think about it, the more it upsets me on so many levels. If there isn't sufficient evidence that I have it, don't write it down. If there is evidence that I do, talk to me about it, for crying out loud!

So, I throw my hands up. I'll see her when I need blood work, paperwork or break my wrist.

I'm going to go call that naturopath I keep meaning to call.

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I feel you. When I was finally told to go on a gluten free diet, it cured a rash I had had for about 5 years and had been told that it was everything from eczema to psoriasis. During one of my doctors visits at the beginning of this year, I left the office after being told that my general practioner couldnt help me and I needed to see a dermatologist again and when I looked at my after-visit summary, it included the diagnosis of "Acrodermatitis Atrophicans Chronica". When I saw that I was like huh? So I went home and looked it up, and basically it said that it was a skin condition indicative of late stage lyme disease!? I was like WTH!? So, I sent my doctor and email and got a response of "Don't worry about it." Needless to say, I havent gone back to her. I'm thankful I fould this immunologist to be seeing. Anyway, hang in there.

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I know, don't it make you just boil :ph34r::angry: I used to be the same way when my nutrients were out of whack. I would be fine in my normal day-to-day functioning but when I went to my doctor and started talking about my problems I would start to get teary. It was not because I was depressed - it was just because I was lacking in a lot of things I needed and I was getting a sympathetic ear.. :rolleyes:

That is really underhanded, to sneak a diagnosis in on you like that. I would go back and talk to her and try to get it removed from your records because it is incorrect :o

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I'm not totally defending her not telling you, but it is possible that she HAD to put that down in order to get your insurance or medical coverage to cover the testing. I have a Dr. who has been educated a lot by me on this (as most of us do), and she has often asked me leading questions or put things down in order to have a required diagnostic code to get lab work done that I have requested. It is entirely possible that she wrote that down as a possible condition which would explain (for insurance) the need to the variety of blood workups, and she didn't mention it to you because she knew it was not the real issue but like you said, she has a required/mandated diagnosis.

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I hear what you're saying, Korwyn, but I don't think that the diagnosis of a mood disorder is required to test my nutrients, iron, and thyroid. She could've easily written something that would've been more accurate like "anemia" or even "malnutrition". She's straightforward with me about the system sucking, so she shouldn't try to be sneaky and not tell me. :angry:

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oh im beyond pissed for u- why dont they just write down in our charts that we have JUSTIFIED EXTREME RAGE against the medical system for failing :angry:

dont even get me started on all my issues with them

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Oh how I can relate... When I saw my regular doctor on May 6th, he was concerned that my blood pressure was higher than normal. I said yeah well there is a reason for that and he said really what is it? I blew a cork at him.. I told him I was furious at the medical profession and that none of them helped me all my life and it took 3 years of me being very very sick and demanding to know why to figure this out. He just listened to me as I spouted then he said 'I'm surprised you're here'.. I told him yeah me too but you're all the same and I like you. He is a good doctor for regular stuff and he apologized that something didn't trigger in his mind sooner and of course gave me the age old 'celiac presents itself as many other things so it's like peeling an onion to find it'... Yeah Yeah now give me my 3 years back!!! It took my dentist telling me to take B12 for the sores on my mouth that set off the lightbulb for him last fall. Within a month I had more testing with a gastro doc and a diagnosis of Celiac. Of course, this was the same gastro that I saw a year earlier that said it was my gallbladder although the pain was on the wrong side his comment then was 5% of patients present on the wrong side. uh huh! 3 weeks after the surgery when I started eating good again it was back. Well needless to say because of the cramping and sickness for 3 years I had a meaningless hysterectomy and had my non working gall bladder out (they found that by accident) along with a million staph infections after the unnecessary hysterectomy, kidney failure, you name it, it happened in the last 3 years. I feel better now that I blew my stack at him, I did tell him it wasn't just him, it was all of them, too happy to prescribe a pill to mask the symptoms than to find the CAUSE. I think he will be a better doctor because of our conversation because I brought to his attention that he listens to a virtual doctor on his computer rather than make his own decisions about things and I pay to see a doctor not a puppet. He didn't even get mad at me for saying those things, he just said I'm sorry that I didn't find you help sooner and asked me to stay on with him so we can fight all of this together. Diabetes (much better now thank you), Celiac (my fight not his but oh well), high blood pressure (relieved greatly after yelling at the source lol), high cholesterol (family kind, take a pill, exercise, eat right, and it's still gonna be kinda high)... There I feel better again after typing this.. 6 months gluten free has given me courage as well!!!

Good luck to everyone, the medical field is not all it's cracked up to be. You can cure the hiccups with sugar but there ain't nothing to cure stupid!!!

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^^^ word ^^^

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Get a new dr. While she sounds like she is acting sympathethic while you are there it is clear there is a disconnect somewhere. Communication involves both listening AND talking. Clearly she has failed the talking portion where she should be explaining to you the diagnosis she is giving, the additional testing that needs to be done and what course of action you can take.

On the subject of crying in the dr.s office--I have so been there and I understand. I went to a cardiologist with severe chest pain one time--it hurt so bad I was in tears and I had been having it off and on for months. I was conviced that I would be diagnosed with a heart condition since I am obese and heart problems run in my family. Instead the dr saw my tears, said my EKG was "normal" and told me perhaps I was just depressed and asked if I needed a referal to a psychiatrist. It was from then on I vowed I would never let myself break down in tears in front of a dr. Instead I made very detailed lists of everything about my symptoms I needed to tell them, including my numerical (on a scale of 1-10) level of pain. Even though it was hard and I was emotional about all my health issues I found having it all written down helped me to state things as matter of factly as possible with as few emotions as possible. This worked for me and the next dr listened to all my symptoms and got me lots of testing. Although she did not come up with the idea of celiac to test me for that (she was stuck on tryign to discover the cause of my unexplained seizures and didn't really think about the other symptoms being connected) she did help me rule out a number of other serious things ranging from epilepsy to sleep apnea (I was sleeping at least 18 hrs per day at one point in time and never felt refreshed). Anyway, this method of writing everythign down and stating it with as little emotion as possible has helped me since then as well. When I went to see an allergist recently because of my suspected serious milk allergy I knew I would have to explain the gluten thing and all the symptoms that had been improved by my being gluten free. So I made a list of my symptoms that resolved on a gluten-free diet. I also had a list of all the medical tests I had had done prior to tryign the diet and where they were done in case he wanted to get the records. He raised his eyebrows and asked "really?" when I said unexplained seizures, but he did seemed convinced when I calmly explained all the testing I had had done to rule out other cause of the seizures and told him exactly how long it had been since I had one. Bottom line is drs deal better in facts and numbers. You need to try to give them as much of that as you can if you want to get more help than a referal to a therapist. But do keep looking until you find a good dr. They are out there although hard to find.

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oh im beyond pissed for u- why dont they just write down in our charts that we have JUSTIFIED EXTREME RAGE against the medical system for failing :angry:

:lol: (it's either laugh or cry) I love this. Maybe I'll email her and ask her to code in JUSTIFIED EXTREME RAGE instead.

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Hey - a new medical arconym - JER

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JER. Perfect. =)

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If you live in Kentucky or here in Kansas - Justified Extreme Rage in Kansan - JERK

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oh im beyond pissed for u- why dont they just write down in our charts that we have JUSTIFIED EXTREME RAGE against the medical system for failing :angry:

dont even get me started on all my issues with them

A big amen to that, sister!! <_<

ditto for me!!!!

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If you live in Kentucky or here in Kansas - Justified Extreme Rage in Kansan - JERK

LOL!

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If you live in Kentucky or here in Kansas - Justified Extreme Rage in Kansan - JERK

:lol: :lol: :lol: :lol: you crack me up, Karen

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:lol: :lol: :lol:

Jergli

Justified Extreme Rage @ Gluten Ignorant

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:lol: :lol: :lol:

Jergli

Justified Extreme Rage @ Gluten Ignorant

:lol: :lol: :lol:

Okay, one more...

JERAGID "Justified Extreme Rage At Gluten Ignorant Doctors" :lol: :lol: :lol:

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u guys are HILARIOUS :lol: i love it... i would love it even more if all the doctors had to read these forums- they might learn a thing or two about a thing or two

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Your ongoing symptoms sound like what I experienced until I went on a whole foods diet. The usual gluten free diet doesn't seem to work for all celiacs/gluten intolerants. You might be a super sensitive celiac. You might want to try a whole foods diet (meats and produce, sorted whole grains, all washed) for a couple of weeks. Then you might not feel like crying in the doctors office anymore. I've cried at the doctors too, by the way.

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Then you might not feel like crying in the doctors office anymore. I've cried at the doctors too, by the way.

Me, too...that's when they reach for the pad to write antidepressants and anti-anxiety scripts :rolleyes: ....like that's the answer.

And I totally agree about the whole foods approach. Helped me immensely.

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I'm trying to think if there is anything I eat that isn't whole food. Sometimes I get boulder canyon plain potato chips. I think that's the main one, every couple of weeks. No pre-made stuff as far as cookies, meals, sauces, sausages. I don't even buy pre-cut produce. I buy bob's red mill gluten-free flours. The manufactured things I eat are: tinkyada pasta (rarely)... oh, and some trader joes gluten-free tortillas. I'm looking to get rid of those... but I really need SOMETHING that's crunchy/salty (I make them into chips). I'm corn-free. Was dairy-free and nightshade-free for a while, but when I added them back in (after a couple months) I didn't feel a difference. Can't handle corn, sorghum or quinoa. I don't eat soy unless it's gluten-free soy sauce.

I do consider myself one of the super-sensitives, though. I feel special? :P

>>Me, too...that's when they reach for the pad to write antidepressants and anti-anxiety scripts ....like that's the answer.

Right?? Spent 5 nights on anti-anxiety meds. Oh boy, that was wild! The wrong solution for the wrong problem, and I won't be doing that again! (Unless I want to end up in rehab :lol: )

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You sound pretty "clean" to me! It's funny, my one indulgence is potato chips, too...what's with the salt craving??? :lol:

ditto on the drugs...any drugs like that do NOT help me---they make me worse? Now, what's up with THAT??!! :lol::blink:

Speaking of "safe" and clean...We make our bread and the only place we eat out is in an entirely gluten-free cafe. I got lucky-- there is one about 45 minutes away. Just awesome. The first time I ate there, I started to cry....I knew I would be able to eat and not get sick :D

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My brother is a diesel mechanic and has worked at a manufacturing plant for 30 years. One time when I told him that I couldn't believe how many doctors I went to trying to figure out what was wrong with me, he said "Doctors give you 15 minutes. Sometimes it takes me more than 15 minutes to figure out what's wrong with a machine." He's always been a thinker, and for some reason, that gave me a wa la moment.

Specialists give you 30 minutes for an initial visit. I had one specialist that spent an entire hour with me, but he still didn't nail it.

To the OP, I have a dx of "Profound Depression" that has followed my medical record around for a few years now. Not one dr. has asked me if it has improved, or commented that I'm not an an Anti-depressant. (They probably think that will take more TIME).

My dog's veterinarian spends more time with her than most of the doctors have spent with me.

Yep, JER.

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My brother is a diesel mechanic and has worked at a manufacturing plant for 30 years. One time when I told him that I couldn't believe how many doctors I went to trying to figure out what was wrong with me, he said "Doctors give you 15 minutes. Sometimes it takes me more than 15 minutes to figure out what's wrong with a machine." He's always been a thinker, and for some reason, that gave me a wa la moment.

Specialists give you 30 minutes for an initial visit. I had one specialist that spent an entire hour with me, but he still didn't nail it.

To the OP, I have a dx of "Profound Depression" that has followed my medical record around for a few years now. Not one dr. has asked me if it has improved, or commented that I'm not an an Anti-depressant. (They probably think that will take more TIME).

My dog's veterinarian spends more time with her than most of the doctors have spent with me.

Yep, JER.

It's just too insane (criminal even) how long we all have been dicked around with and left hung out to dry....can I say "dicked around" on here?? :lol: :lol: :lol:

DOUBLE JER :lol:

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