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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.

"are You Still On That Bogus Diet?"
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16 posts in this topic

Someone asked me that at church the other day.  I'm Celiac.  I was so ticked at the comment that I had to "Bro" the guy up...  My response...  "Bro, I will be on this diet the rest of my life.  What I have, doesn't just go away.  My diet is not a 90 day script from a nurse practitioner at a doc in the box clinic."  

 

Anyway, I know I'm not the first to experience this.  It didn't ruin my day.  I don't feel like a victim.  It just blows my mind that even when you explain this to someone, you may as well speak a foreign language to them and it would be as effective.

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"My disease can't be cured, but there ARE cures for ignorance and rudeness. Why don't you look into them?" That would be my reply to this jerk. :angry:

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"My disease can't be cured, but there ARE cures for ignorance and rudeness. Why don't you look into them?" That would be my reply to this jerk. :angry:

That is legit!!!!

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Anyway, I know I'm not the first to experience this.  It didn't ruin my day.  I don't feel like a victim.  It just blows my mind that even when you explain this to someone, you may as well speak a foreign language to them and it would be as effective.

i know it - if their aunt sadie never had it, they don't even pay attention.  even if aunt sadie had it, she didn't follow the diet, so they think "aunt sadie was never that careful - once she felt better, she ate cake!"  and they think it's overkill.  right - it doesn't ruin your day.   lolz - 'bro him up' - i will pay attention next time someone 'bro's" ;)  i sing the for ever song:  "i will be on this diet for ever and ever and ever and ever (deep breath) and ever and ever and ever and ever and ever and ever and ever and ever (another deep breath) and ever and ever and ever and ever and ever <continues on.  you get my point.  they usually run away after that.  hey, barty, write me some tabs lolz  :D

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Verse:

 

G

I'll be on this diet forever and ever and

 

D

ever and ever and

 

G

ever and ever. I'll be on this diet forever and ever for

 

C

ever so

 

D

what's it to

 

G

you?

 

Chorus:

 

C

I have a disease that can

 

Em

never be cured but I

 

Am

handle it

 

D

well with my

 

G       G7

diet        it's

 

Am

none of your

 

B7

business so

 

Em

don't say a word

 

A7

I might slap your face if you

 

D       D7

try it

 

Repeat verse

 

 

OK, so it's not tabs, but if you use these chords I'll bet you come up with the same melody I did. :lol:

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i *love* it :D  and better than tabs b/c i am still a beginner (ben nichols makes it look soooo easy...! )   <_<

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OK, that's TWO reasons you should come to the Black Hills. I'll give you a guitar lesson, and I'll take you to Lintz Brothers for a REALLY good gluten-free pizza. If you need a third reason, it's the scenery. Come on out!

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LOL 

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somewhere in the black mining hills out in dakota there lived a young boy named rocky raccoon - and one day, his woman ran off with another guy, hit young rocky in the eye, rocky didn't like that he said "i'm gonna get that boy"..........

 

lolz - i have a friend who lives in rc; she loves it - one of my 7m3 buddies :)  haven't seen her in ages; probably since the record release weekend in orlando......

 

YES!  i would *love* a really good pizza - loves me some 'za - my friend is a foodie, too, i guess she lives in the right place!

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We have some real talent in this forum!  If its not clever wit, its music composition or sometimes both!  

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:D:lol: 

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If it makes you feel any better, when I mentioned not eating gluten once, I had a nurse tell me, "Oh, I am so sick of hearing about that fad diet."  I had to respond, "I have Celiac Disease and this is not a fad diet to me."  You would think a nurse would understand a little better than the general public.

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If it makes you feel any better, when I mentioned not eating gluten once, I had a nurse tell me, "Oh, I am so sick of hearing about that fad diet."  I had to respond, "I have Celiac Disease and this is not a fad diet to me."  You would think a nurse would understand a little better than the general public.

i had a nurse practitioner roll her eyes at me when i said my lip gloss had to be gluten free.  then she said "you don't EAT it, do you?"  i said "sometimes.   when i'm reallllll hungry..."  and stared her straight in the face.  she didn't say anything after that............... <_<

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Bro, some people...

 

A few weeks ago I was at a new place that had a nice little menu, mostly gluten-free, though there was soy in stuff. I asked about it, saying I was gluten-free and couldn't eat soy. The server (and possibly owner, I think), did know what I could/couldn't have (and even said they could take out any soy for me), but asked: "Oh, are you on a cleanse?" Me: "ahhh, a life-long cleanse, I guess". she: "I bet you have great skin now". Me: "Um, I suppose it might have gotten better..."

The food was great, no problems with it at all, but MAN! I think that's the worst "this is totally a fad diet and great for your complexion" kind of reaction I've gotten from someone.
They did have good gluten-free beer on the menu, so I'll likely be back

 

for ever and ever and ever and ever and ever and ever amen.

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After reading the song earlier in the post I keep getting Taylor Swift's We are Never Ever Getting Back Together running through my head but with new words:

 

We will forever, ever be on this diet... 

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Bro, some people...

 

A few weeks ago I was at a new place that had a nice little menu, mostly gluten-free, though there was soy in stuff. I asked about it, saying I was gluten-free and couldn't eat soy. The server (and possibly owner, I think), did know what I could/couldn't have (and even said they could take out any soy for me), but asked: "Oh, are you on a cleanse?" Me: "ahhh, a life-long cleanse, I guess". she: "I bet you have great skin now". Me: "Um, I suppose it might have gotten better..."

The food was great, no problems with it at all, but MAN! I think that's the worst "this is totally a fad diet and great for your complexion" kind of reaction I've gotten from someone.

They did have good gluten-free beer on the menu, so I'll likely be back

 

for ever and ever and ever and ever and ever and ever amen.

You can't bro me if you don't me....    HA!  Just messing...  Save that one for a rainy day--you're welcome!  I have to say I've never received comments about my complexion because people must be so enamored by my shiny shaved head.  Hey, I'm with you, I can be quite forgiving when there is gluten free beer involved. With a couple gluten-free beverages I might even just make something up about my complexion...  Here goes...

 

"Bro, you should have seen my sunspots and wrinkles...  It all went away on this diet...  If Vitamin E and Aloe were to mate, it couldn't birth anything better for these pours than a gluten-free diet...  Legit, brah."

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    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
    • Nature's Bounty Protein & Vitamin Shake Mix
      Sort of funny.  Says no wheat at the bottom but also says this " Other Ingredients: Proprietary Protein Blend (Soy Protein Isolate, Whey Protein Concentrate), Cocoa (processed with alkali), Inulin, Oat Fiber, Fructose, Natural Flavors, Maltodextrin, Soy Lecithin, Tricalcium Phosphate, Xanthan Gum. Contains milk and soy ingredients. Contains wheat ingredients.   I bet they do not use gluten free oats, so its a bit of a gamble.  Not one a Celiac should take as there is no such thing as "not severe Celiac".  Even if you don't feel the damage, consuming gluten will start damaging you.  Maybe its just catching up with you.
    • celiac disease is psychosomatic
      I am assuming United States- It has been a long time since I studied health info law, but I doubt this part has changed.  A doctor would not change the record just because you said its wrong.  They might make a correction if they remembered or had actual facts (like a lab test read incorrectly or appearing later).  What you are allowed to do is write a letter to be included in the record.  You need to put in larger letters at the top, something like "This note must be included with any release of information from my medical record".   I am not sure how it is handled with electronic releases these days.  You could contact a medical records department (ask for the release of info section)  at a large hospital near you and ask how they handle it.  Be nice and tell them it isn't a problem with their facility but you know they are the experts.  I would urge you to make the note short and not nit pick.  State the big basic facts that you don't agree with and don't worry about the little things.  People will not read a really long note or it will make you look crazy (in a bad way  )   And for the apt with your neurologist.  Don't bring it up, see what he/she says first.  Half the time they don't read all the little details or even receive more than a brief - tests run & results and maybe a brief summary.  You might be surprised, your doc might think the person is a bit of a jerk, but hoped you might mesh with them. I recently had my doc agree with me when I said I couldn't stand another doc that had been in her practice.  lol
    • celiac disease is psychosomatic
      I called this doctor's office again to inquire if my medical records have been corrected. When I called to amend my records because there was inaccurate information, the staff member told me that I need to write my complaint in email to doctor. So, that's  what I did. The doctor wrote things I said that I didn't say, which changed the meaning of what I said so I wanted to correct that. I talked to a different staff member today who irritated me in the past by saying things she was going to do which she never did. Her tone of voice is condescending and argumentative like she refuses to help you or that's probably what makes me feel irate. Today she said the doctor wasn't going to commit fraud by writing something I told her to write. I don't feel irate when I talk to the other staff member who answers the phone. Anyway, this staff member said she printed my email for the doctor to read, and she'll reply when she wants to reply (never). I said that it's not the doctor's choice to choose whether or not to correct inaccurate information in medical records. I said I think by law, it must be done so if the doctor continues to ignore my request to correct inaccurate information, then I should probably file a medical complaint somewhere. Finally, the doctor called me back. She asked what was inaccurate when I said I wanted to correct the incorrect information. Then, I asked if she read my email. She said she did not have time to read patient STORIES. I said a good doctor would make the time to read a request to correct inaccurate information in a patient's medical record. Then, she said I'm sick to keep writing letters to her. I said I only wrote one email to her and it was because a staff member said that is how to amend the inaccurate information. She added that if I really had physical symptoms, I would not have been able to get a college degree or write letters to her. Although I explained to her during my consult that I took online classes and did homework in bed with lots of breaks, she thinks I must be pretending to have symptoms. I also explained during my consult that half of my dizziness and migraines are gone since being on a gluten-free diet. Yes, this makes sense why her office makes me feel so irate! I ended the call by asking if she was going to correct the inaccurate in my medical records. She kept rambling on how only sick people keep writing letters to doctor. Again, I told her I only wrtote one email to her and that's because her staff member told me to correct inaccurate information in record. The staff member recommended this instead of filling out a record amendment form, which I don't think they have. She said file a complaint like it was a joke. Since my neurologist referred me to her when I inquired about help for my memory problems, I'm afraid she will tell him negative things about me. Her office is just across the hall from his. Doctors are more likely to take the word of another doctor over a patient. In contrast to this doctor, my neurologist is a real competent doctor. Do you ever think that sometimes doctors are crazy, but they get away with making others think it's the patient who is crazy because they are more powerful? This doctor is a neuropsychiatrist. I will never see a neuropsychiatrist again due to this bad experience.  My appointment with the neurologist is in another week. I don't know if I should briefly mention my bad experience with this doctor so he won't believe her if she tells him that I am faking my symptoms. It would be like I was faking my whole life if I was faking my symptoms. Maybe I could say something like the brain testing wasn't very helpful with that doctor since she assumed my symptoms were all in my head  because I graduate from high school and obtained a college degree in the past. I also told her during my consult that I received average grades in high school because I often went straight to bed after school not having chance to do homework. This feels like abuse or abuse of power from the doctor. I wish I recorded the phone conversation with this doctor calling me names.
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