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We Need To Start A Thread On Stupid Stuff Doctors Say!


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#181 Slr38

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Posted 11 October 2012 - 03:56 PM

Geez, after reading these posts I am so nervous for my appointment next week! I will be asking my doctor to send me for blood work to test for Celiac Disease. I am so worried that I may get a stupid reply from my doctor! I am not very good at sticking up for myself.
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#182 mushroom

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Posted 11 October 2012 - 04:06 PM

Geez, after reading these posts I am so nervous for my appointment next week! I will be asking my doctor to send me for blood work to test for Celiac Disease. I am so worried that I may get a stupid reply from my doctor! I am not very good at sticking up for myself.


You need to go in to your appointment armed with ammunition, so that if you get that kind of response you can say, "Well, I have this symptom and this, and this, and out of this whole list of symptoms I have X number of them and I think that really could be what is wrong with me. And these are the tests you need to run to find out" :P Do some googling research around here and find the info you need. You can't be a celiac and be a wuss :lol: or you will be an undiagnosed one :ph34r:

Seriously, an armed, informed patient gets a lot further than an indecisive one, but you don't have to go in with all guns blazing. Keep your gun holstered and the ammo up your sleeve until and if it becomes necessary. Then be very calm and reasonable in explaining how you came to believe that is what you have. They (doctors) are capable of learning if we teach them right. :D

Best wishes for a successful appointment.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#183 GottaSki

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Posted 11 October 2012 - 04:21 PM

Geez, after reading these posts I am so nervous for my appointment next week! I will be asking my doctor to send me for blood work to test for Celiac Disease. I am so worried that I may get a stupid reply from my doctor! I am not very good at sticking up for myself.

No reason to worry yet. There are many very good doctors and knowledge regarding Celiac Disease is slowly improving.

The best thing you can do is be prepared. Bring a written list of your symptoms that can possibly be Celiac Disease or Non-Celiac Gluten Intolerance. I find it comforting to have my list of symptoms and all the questions I have thought prior to the appointment right in my hand. There are still times when I forget to ask something, but my appointments have improved greatly since I started this practice.

Remember - your doctor may very well think it's a good idea and order the tests without discussion.

In my opinion the best question for your very first appointment - should the doctor dismiss the need for testing - "Given my symptoms, what harm can running a full celiac panel cause?"

Oh...there is a list of the 300+ symptoms of celiac that someone has posted a few times - maybe someone else can provide it for you. I'll take a peek and see if I can find. It can be handy to take to your appointment as well.

Hang in there :)

Edited - Mushroom beat my post and it is spot on!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#184 Slr38

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Posted 11 October 2012 - 07:11 PM

Thank you both for your replies, they were very helpful. I will be sure to have a list of symptoms with me. There is also a letter for the doctor that the Biocard people supply if you get a positive result.

I will be brave! :)

Thanks!
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#185 KimT

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Posted 17 October 2012 - 10:56 AM

I hear you on the Dr. shopping! I've been to 6 different ones since my DX in late June. Two of them were Residents who said I was "too old" to have Celiac.


That is funny, I got told by my GI that I was too young to have it at 27 years old. He went on to explain that it was an end of life problem. However, he agreed to do the biopsy because I had the positive blood test and the referral from my GP. He did one sample and then declared that the biopsy was fine, I did not have Celiac and that I could eat bread. This is before I knew anything about it so I was relieved.

I then was curious about the false positive blood test and the fact that I felt so sick, so I looked it up on the internet. After just a little bit of learning, I was positive that I had it. I talked to him about this at a follow-up appointment. I brought up the positive blood test and how we should have gotten multiple samples from different areas for biopsy. He said, "well your white, I wouldn't eat a lot of bread, most white people can't tolerate much carbs." WHATTTTTT? My husband then jumped into the conversation and this guy defended his not celiac diagnosis and sensitive to carbs because I'm caucasian. He ended it with a, "we never have celiacs in my country" comment (he's African).

Thank goodness I can just go gluten free and I don't need any medications/prescriptions from him or anything.
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#186 psawyer

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Posted 17 October 2012 - 11:05 AM

That is funny, I got told by my GI that I was too young to have it at 27 years old. He went on to explain that it was an end of life problem.

I was 45 when I asked my long-term primary care physician to test me. He said it was a rare childhood disease--I was too old--but he made the referral. :o
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#187 ncdave

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Posted 17 October 2012 - 03:22 PM

Hay doc, does this antibotic for my broncitus have any wheat or corn in it?

No it doesen"t contain anything like that, i think you"ll be fine.

One phone call to the mfg proved no gluten, but azithromycin (more common known as a z pac) does indeed contain corn.
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gluten free 12/11
dairy free 2/12
soy free 10/12
corn free 10/12
nightshade free 10/12

#188 my3monkees

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Posted 17 October 2012 - 04:28 PM

The exact same pediatrician who had diagnosed my dd a 2 yr. earlier.
When I mentioned that her younger brother was starting to show the same symptoms. She said it would be really hard having 2 gluten free children, especially considering how expensive it was. So I should just give him a tums before each meal. <_<
Apparently I was supposed to let him get as sick as my daughter had been, just to save money!
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#189 Krystal K.

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Posted 24 October 2012 - 10:21 PM

8 months pre-diagnosis dr says "what do you think it could be?".......ummmm if i had a clue i wouldnt be here.....6 months pre-diagnosis "hmmm I wonder if you have celiacs?" .....but didn't test me for it instead ordered a nerve conduction test & a brain mri... man if only she went with her gut and actually tested me for celiacs back then, I would've suffered a few months less and that would've been awesome!!
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feels good to be free

#190 CarolinaKip

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Posted 25 October 2012 - 04:44 PM

Before DX...My regular MD patted my leg and said "well, I'm sure your GYN can fix you up"

After having surgery (many pills, and ct scans)to see if I had a "female" problem, my GYN said.."have we thought to send you to a gastro"

Gastro PA told me it was IBS...only after feeling even worse on that diet, did I go back to eating salads. Feeling somewhat better, the PA asked 4 months later..."have we tested you for Celiac?" The gastro MD doing my endo asked"Why didn't we do this with your colonscopy?" I said "ask your Physcian asst!"

Then after being gluten-free for 8 months and not feeling much better he did another blood test. My levels were almost normal. He said"Maybe you don't have celiac?'

Are you kidding me!!! I told him to go back and look at the beginning blood work and my endo! He said "Yea, you do have celiac grrr! :huh:
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How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in your life you will have been all of these.
George Washington Carver


Blood work positive 4/10
Endo biopsy positive 5/10
Gluten free 5/10

#191 LWebster

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Posted 02 November 2012 - 07:10 AM

My partner asked her doctor about being gluten free and for some tips. The Dr turned the PC monitor round and showed her a website that she had already read. The Dr clearly had no idea! Time wasted.
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#192 AandGsmomma

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Posted 05 November 2012 - 08:53 PM

I love this thread!!!! I switched primary doctors because my previous doctorr totally missed PNEMONIA! I explained the MA that my pain level was a 7 and that the pain had been going off and on for years! Dr came in the room and said "Well since you have had this for so many years, I probably wont be able to figure it out. You will just have to deal with is because its a chronic pain issue!' This same dr also explained at a follow up appt when I asked for guidance on a healthy diet she told me that she couldnt advice patients on their health because SHE WOULDNT GET PAID FOR IT AND I SHOULD JOIN WEIGHT WATCHERS!
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#193 frieze

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Posted 06 November 2012 - 08:19 AM

I love this thread!!!! I switched primary doctors because my previous doctorr totally missed PNEMONIA! I explained the MA that my pain level was a 7 and that the pain had been going off and on for years! Dr came in the room and said "Well since you have had this for so many years, I probably wont be able to figure it out. You will just have to deal with is because its a chronic pain issue!' This same dr also explained at a follow up appt when I asked for guidance on a healthy diet she told me that she couldnt advice patients on their health because SHE WOULDNT GET PAID FOR IT AND I SHOULD JOIN WEIGHT WATCHERS!

I would have been tempted to report her to the AMA, for the last comment. True, it would not mean much in and of itself, but as part of a paper trail, it couldn't hurt.
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#194 Celiac Mindwarp

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Posted 09 November 2012 - 09:26 AM

Dreadful isn't it? I asked a number of doctors for help with weight loss over the years. Several have said eat less and exercise more. D'oh, if only I thought of that...
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#195 moonablaze

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Posted 09 November 2012 - 10:42 PM

at the very least they should have referred you to a nutritionist or better yet an actual dietician!

Today I went in for an endoscopy to see what might be causing this stomach pain and other symptoms I've been having for weeks (I've been gluten free for over 2 years but it started with an accidental glutening). When they wheeled me into the treatment room the tech asked me about my symptoms and replied "have you tried cutting out gluten?" >.<
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