Top Five Reasons To Get A New Doctor
Posted 18 May 2007 - 05:47 PM
ouch!!! thats gotta hurt.
Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)
Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0501
HLA-DQB1 Molecular analysis, Allele 2 0501
Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)
You can teach an old dog new tricks!!!
Posted 18 May 2007 - 06:42 PM
First of all--Ann, how funny is it that you started this thread
Mine was when I started requesting tests and asking about too amny things she just didn't know about.
My doctor was a lovely person, but after I figured out that I might have a "problem with wheat" from an alternative practioner, checked it out with a gastroenterologist, and was finally diagnosed--I told her and she kind of raised her eyebrows and said "did it relieve your symptoms?"
Glad you liked it,Patti!! I am not always a "patient" patient !!
Positive celiac biopsy 4/2003
Autoimmune thyroiditis 8/2005
Gluten Free Since 2003
Posted 18 May 2007 - 07:09 PM
Posted 18 May 2007 - 07:22 PM
It wasn't until my first Women's Health continuing education course (you'd know that each one is a WEEK long instead of a weekend) that I found out what was wrong with me. I am the type person who had a pap every 18 months, just so I didn't have to go in as often! My boss asked me to be the liaison for this course. I was working for a larger corporation, and to do this would give me more "visibility", according to her. PLUS, I'd get the course and my lodging for free. So, without doing my homework, I said "Sure." Then, the day before I was supposed to leave, my co-worker and friend said "You know, you are the LAST person I thought would take this course." I said, "Why'd you say that?" She said, "Because of the lab." I said, "Lab? What Lab? How can you have a lab when you are learning . . . OH NO." She started howling laughing. She said, "You didn't READ what you were getting yourself into???!!!!! You don't even go to the gynecologist like you should!!! You're going to spend one entire week practicing on each other!!!!!!!" I thought I was going to die.
It only got worse when the instructor started naming symptoms, and asked us to raise our hand if we had any that she would name. Of course, ALL of the girls in there were 20-something, none with kids, so here I am 38 years old, two kids, both difficult births, and answering in my head "yes" to all these questions!! When we get to the lab portion, the two young girls I was working with said, "OH MY GOSH. Should we get the instructor?" I knew then I was in trouble. They asked if I wanted a mirror, and I said, "Why not." The instructor came over and asked me if I had answered yes to any of the questions. I told her all of them. THAT was how I found out all those things were wrong.
What I found after that? The way that a LOT of women find out about things like that are in the Physical Therapist's office -- one that specializes in Women's Health. There are a lot of women in Louisville who are on Prozac, etc., for a problem that is NOT in their head.
Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".
"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie
Posted 19 May 2007 - 01:36 AM
Then there is the doctor I went to last year, named Kevin. When I told him I have celiac disease, he says, "I know all about celiac disease, my son has it, he can't have barley." At that point, I felt bad for his son. Dr. Kevin had no clue about celiac, not really, which is very sad--his own son was diagnosed with it and he didn't read up on it. How sad is that?
Or when I heard a very well known celiac nutritionist tell a celiac, "You can wear any make-up, it doesn't matter, you are not eating it!" Yes, when the same person asked me something, I also explained to her about being very careful with make-up.
There is so much ignorance out there and yes, I do expect it from people, but not from doctors, especially when celiac disease/gluten intolerance is so much in the news now.
Long Island, NY
Double DQ1, subtype 6
We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!
Posted 19 May 2007 - 03:50 AM
1977 East Orange Veteran's Hospital (no wonder Walter Reade Hospital has been found to be unfit)
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003
Posted 22 May 2007 - 08:21 PM
Good thing he accidently found it w/ a scope alongwith gastritis and a hiatal hernia.
At least I had a son and not a daughter so they could not sayit was allin his head because of hormonal issues.
Posted 23 May 2007 - 02:54 AM
Thanks for starting the thread.
Best regards everyone.
I can do all things thru Christ which strengtheneth me.
Blood Test: Negative 03/2006
Biopsy Negative 04/2006
Stopped gluten-free diet 04/2006
EnteroLabs: Positive 04/2007
Fecal Antigliadin IgA "Positive"
Fecal Antitissue Transglutaminase IgA "Positive"
Quantitative Microscopic Fecal Fat Score "Positive"
Fecal anti-casein (cow’s milk) IgA antibody "Positive"
HLA-DQB1 Molecular analysis, Allele 1 0301
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 7,9)
Started gluten-free diet 03/25/2007 (This time is permanently).
One of my daugthers (Elizabeth) also have the gluten and dairy allergy. We started her in the diet, and doing excellent.
Posted 23 May 2007 - 01:55 PM
How about when a hemotologist tells you 'you're a woman, women get anemia. As soon are you get through menopause your anemia will go away' and you're only 43 at the time.....and have not started menopause yet?!!!
Also, my dx'ing GI told me 'you can still eat rice, corn and potatoes and hung up' - literally. I fired him that minute though he didn't know it until he got my letter explaining a few things to him about the gluten free diet and how NOT to treat future patients who had it.
On the flip side my pcp was honest to say she was told she'd never see a patient with Celiac but now she has serveral with it. Her assistant called the other day and asked if I'd ever heard of someone being misdx'd with MS when they actually had Celiac (she pronounced it selliac) and I said YES!!!!!!!!!!!!
She also asked why so many people were being dx'd with Celiac (again pronouncing is incorrectly though I corrected her the first time). I reminded her that I'd told my doctor this was coming over a year ago. Sometimes people just don't listen unless they are hit over the head.
Positive blood tests - Sept. 2005
Positive biopsy - Jan. 2006
Gluten free since 1-23-06
Posted 23 May 2007 - 07:47 PM
Posted 23 May 2007 - 07:48 PM
Posted 18 June 2007 - 05:26 PM
Posted 18 June 2007 - 06:27 PM
needless to say when I move next month I'm going to find a GI who knows something (ANYTHING!) about celiac around Phoenix!
Posted 18 June 2007 - 06:52 PM
I the midst of major allergic reaction to Synthroid (BP is 188/92, resting pulse is 110 normally 68) Full edema and massive hives.
Phone conversation with Nurse Practioner:
Her: "You have Hives?"
Me: "Yes, Hives H-I-V-E-S, you know Uticaria? Allergic Reaction?
Her: "Well, that's just dry skin"
Me: No, it started the day after I started the Synthroid and has gotten progessively worse"
Her: "Well, it could be an allergic reaction, but that is very rare"
Me: "So I guess that means it can't be true!"
I scheduled an appointment with the doctor who took one look at my vitals and said "I don't like you on this medicine, we have to get you off, Now!"
I will not go back to said nurse pract. again., but I love the Dr.
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users