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Top Five Reasons To Get A New Doctor


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183 replies to this topic

#31 brendygirl

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Posted 15 July 2007 - 10:35 PM

First he told me I had lactose Intolerance, which he had, too. Funny, going off dairy made me L.Intol. Since then, I've gotten back on it.
Then he said my back pain was from slouching and to do more situps (I was aerobics queen as it was)...plus then I'd look at my fat, slouching husband and wonder how his back didn't hurt...????
I begged for the bloodtest and the Dr. INSISTED that I go gluten free to see a dietary response and then if I felt better he'd do the blood test.
When my IgA or whatever levels were "elevated but not enough to diagnose". I said, "What do I do?" He said, keep on a gluten free diet!
btw
Every time I went in he'd say "I think I have that, too". I think they teach them to say that to show compassion. But I can tell it's BS. When he sent in my bloodwork he sent his own in to test his levels, supposedly. what a dork
.

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Gluten Free since November 2005

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"If you want breakfast in bed, sleep in the kitchen.." ---Ed Polish

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#32 Eriella

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Posted 16 July 2007 - 04:11 AM

My doctors have some gems:
- We found what is causing you the pain! It's an ovarian cyst! (But my pain is 8 inches above my ovary!)

- It's just stress induced constipation. Take stool softeners every day and you'll be fine. Some people just get constipated (I hadn't had a bowel movement in 2 1/2 weeks and the xray showed poop throughout my intestines)

- Just keep taking the stool softeners (when I told them that eating pasta and bread made me sick and how miserable I was traveling in Paris and Italy-- how much obvious can it be!! The big problems always started during the last weeks of school where I was eating pizza and drinking beer and I was joking about how I had C going into D after my pasta binge! AND I HAVE A FAMILY HISTORY (In my defense, I didn't know what Celiac meant)!!)

- You have no antibodies, so it isn't gluten (1. no one in my family has antibodies. 2. He told me 4 months before the test they told me that "if it makes you sick, don't eat it", so I had not had anything with obvious wheat in it. 3. I had a wonderful dietary response in the week between when my blood was drawn and when I got it back)

Grrr-- Doctors are not my favorite people. I understand why the med school machine causes this, but I hate how clueless some are.
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Symptoms on and off my whole life
Major symptoms starting 2005
Zero blood antibodies
Gluten free with positive dietary response since April 2007

#33 Jodele

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Posted 16 July 2007 - 08:38 AM

When my oldest DD was 2yrs. we took here in to the gi dr. and ran some tests. because of stomic pain. I thought her reflux was flaring up again. She was born with a alsuer also. My mom went and took her to her follow up appt. and the gi clinic scured up her referal and did not let her be seen with the doc. I was 7 mths pregnent with my middle DD and dicided not to have a fight to get her in again. Takes at lest 3 mths to be seen at this ped gi. I Thought they would have called if anything was wrong with any of the testing. Fast forward five years and Emily was getting worse again. Got a pointment with the same gi doc. She came in and ask if Emily had ever been seen by her and I said yes when she was 2. "did I do testing on her?" Yes I said. She went out and was back with in 10 mins and said that she tested positive for celiacs and we need to retest her. I was so ticked off I could have spit nails. Thats when I gave up on DR.s and dont trust them at all. Well Emily's test came back even more positive then before and we set up a biopies, biopy day and I asked the dr to get at least 10 biopies of the small intestince and she look at me like I was crazy and she said one will do just fine. ha ha ha. biopy came back neg. wonder why. Then the doc said that Emily can eat gluten because she did not have the damige to her villa. I told her she had no qlue of what she was doing and a positive blood work means that you have problems with gluten and I am going to put her on a gluten free diet. The doc was so shocked and said I could do it but she dought that it would help her much. It has been almost a year and Emily has not have the poblems she had and now is in her weight group for the first time in her life. Yea it did not help her out. lol. Now my sisters kids are going to see her now and I told her just get the blood work done and be done with that doc. There are only 3 ped gi docs in okc and they are all in the same office. sucks.
Jodele
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Jodele Fecal Antigliadin IgA 21 dx with Graves diease 10/06
Emily Has a positive blood test Negitive biopsy (she has gain 10 lb since gluten-free diet)
Melinda giong for testing
Katie going for testing

All gluten free 8/06

#34 melmak5

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Posted 16 July 2007 - 01:03 PM

When your doctor YELLS at you, saying that you must go on antidepressants because the stress and anxiety of not having a diagnosis is making the symptoms worse.

(I said, "Well why don't we figure out what IS wrong with me. I am pretty sure the stress of not knowing will probably go away then.)

Since the diagnosis she refuses to answer my phone calls or see me. Her assistant informed me that any and all questions I had must be directed to the GI specialist... even if they have nothing to do with GI issues.
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#35 ravenwoodglass

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Posted 16 July 2007 - 01:45 PM

When your doctor YELLS at you, saying that you must go on antidepressants because the stress and anxiety of not having a diagnosis is making the symptoms worse.

(I said, "Well why don't we figure out what IS wrong with me. I am pretty sure the stress of not knowing will probably go away then.)

Since the diagnosis she refuses to answer my phone calls or see me. Her assistant informed me that any and all questions I had must be directed to the GI specialist... even if they have nothing to do with GI issues.



I would formally and in writing fire this doctor. I would be very specific about your treatment by her and I would also send copies of the letter to the head of whatever medical group or hospital she is affilated with. Make sure you get full copies of ALL your records from her ASAP (you have a legal right to them and don't let them try to tell you that you don't, you may have to pay a copy charge, and let your new doctor know what happened.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#36 debmidge

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Posted 17 July 2007 - 02:34 AM

When your doctor YELLS at you, saying that you must go on antidepressants because the stress and anxiety of not having a diagnosis is making the symptoms worse.

(I said, "Well why don't we figure out what IS wrong with me. I am pretty sure the stress of not knowing will probably go away then.)

Since the diagnosis she refuses to answer my phone calls or see me. Her assistant informed me that any and all questions I had must be directed to the GI specialist... even if they have nothing to do with GI issues.



Boy she sounds like a "gem."

One GI told my husband he has an obsession with food and needs psychological help....(this was prior to celiac diagnosis, and we're still struggling with IBS issues and noticing that certain foods bothered him - foods like fruits/vegetables/spices -not gluten but it certainly foreshadowed an intolerance that the GI should have picked up on).


And here's a good one:

Your GP gets angry because your ob/gyn specialists notices that you have a lump in your thyroid and gives you a "script" to get a blood test so that it's done before you go to your GP (to save time, etc.). The GP comes down with "professional envy" and then decides not to allow you to get a nuclear scan of the thyroid just now ( to see if the growth is a hot or cold nodule (cancer). At this point, you fire the GP.
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Husband has Celiac Disease and
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 2006
It 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

#37 bfarnsworth0709

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Posted 18 September 2007 - 04:00 PM

When the doctor tells you that you have Celiac Disease then his next sentence is....It's ok though to still eat whatever you want. If you get sick it doesn't matter just don't eat for a little bit and you'll be o.k. What sad, is b/c he was my doctor and I had never hear the word gluten before that visit, I continuted eating "whatever" for the next 5 years.

Think I need a new doctor!?!...... :-)
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God Bless,
Bobbi


"I can do all things through Christ who gives me strength" Philippians 4:8

#38 KAG

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Posted 20 September 2007 - 04:33 PM

My doctor today said "I don't think that I can help you."

I said "Then there is no reason to be here."

And I walked out.
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Kim

Irritable Bowel Syndrome 1995
Candida Problems 1996
Low Thyroid 2001
Gluten Free 2002
Dairy Free 2007
Egg/Onion/Garlic Free 2007
SIBO (self diagnosed) 2007
SCD since October 2007 and starting to feel better than I have in years!

#39 mtraezme

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Posted 20 September 2007 - 06:21 PM

Luckily I don't need a new doctor because my GP and GI both told me that I was "fine" after not listening to a word that I said. I was so "fine" that they refused to run any tests or even do a thorough exam. I guess that means I'm okay, right? Well, aside from the pain, bloating, gas, loss of coordination, etc.
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#40 mama2

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Posted 20 September 2007 - 06:46 PM

Or when the doctor directs you to the internet for information.
That really was good advise, as this is where I met all of you wonderful people.
Cathy

I was also sent to the internet for information... had no idea what to eat those first few days. Got a great start here at celiac .com :)
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#41 ab123

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Posted 20 September 2007 - 10:14 PM

When a top children's hospital in Texas misdiagnoses you for 3 years with Lupus and insist that the meds. help you when they dont. So then your frustrated mom spends countless hours looking up your symptoms just so the doctor can tell her that I dont have enough of the "commom" symptoms for Celiac. I guess telling them "eating one Goldfish cracker makes me have D." wasnt enough evidence to show that I cant have gluten!!

It took my primary care doctor to diagnose me, when he thought he was doing the right thing sending me to the specialist.
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#42 cyberprof

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Posted 22 September 2007 - 01:51 PM

Doctor #1- An internist. I'm 45 and the doc is a woman a bit older. I go in complaining of bloating and "bathroom" problems, with several symptoms of ovarian cancer and wondering why I feel so bad. She poo-poos me but pokes me and does a blood test for ovarian cancer, which is negative. Tells me I'm just overweight (I am, by about 25 pounds) and to go away. Of course, if she had really cared, she might have asked me my other symptoms and diagnosed celiac. A year later I got really sick and had stomach pain, so she did refer me for an endoscopy for an ulcer. That was the only good thing she did.

Doctor #2 - A GI specialist set up to do my biopsy. He was great because he didn't see any evidence of celiac (and wasn't told to look) but he took small intestine samples. No blunting villi BUT there was cellular evidence of an immune response, so he said to eliminate wheat & gluten. Sent me to a dietician. On the followup where I told him how much better I felt and how quickly, he diagnosed celiac. HOWEVER, he told me that since I had a "mild" case, I didn't have to be as careful with CC and could occasionally cheat. So, in the end, a dud.

Doctor #3 - Another internist, a woman in her 30s. I wanted a better doctor, so I went to her on a recommendation from a family member. I told her I felt better after the celiac diagnosis/gluten elimination but still crummy and, based on symptoms and research, I wanted to be tested for autoimmune thyroid problems. She refused, saying that I had no symptoms and all I needed was my TSH tested and I argued with her. She snarkily commented that "not everything you read on the internet is correct" and I argued back that what I read is PubMed, and I also am an intelligent person and expect to be treated correctly and with dignity. I fired her and am seeing a naturopath next week.

Doctor #4 - My long-time OB/GYN who also had the opportunity to diagnose me based on sypmtoms 2-5 years ago. Yesterday when I saw her, she was interested in the celiac and asked what my sypmtoms had been. I told her and stated that that was why I was worried about ovarian cancer and there is some overlap in the symptoms. She sarcastically said, "EVERYONE is worried about ovarian cancer!" HELLO of course we are when CNN or some other media says "IF you have bloating, gas etc. etc. ask your doctor to ckeck for ovarian cancer". And some women do have it. Why she was so defensive I don't know, except maybe because I pointed out that there were symptoms of celiac over 4 years ago. I didn't blame her explicitly but... there you go.

Doctor #5 - My son's Pediatric GI. Talking about my diagnosis, he tells me that without total villious blunting, many doctors would have said that I don't have celiac. Yeah, and since I went off gluten in February, who's to say that by now or next year I wouldn't have been even more sick and by then I would have shown totally "gone" villi due to more gluten damage? Do they really expect someone to have to get so sick before they diagnose? The one good thing that he told me is that even though the insurance company won't pay for my son's gene test until all other test options (i.e. EGD) have been exhausted that I should get MY gene test done and paid for by insurance to see if I "really" have celiac. So I will, but even if I don't have the gene, I would never go back on gluten. But it's a good idea and will help me help my son, even if the doctors won't.

You know the most frustrating thing is that without all you guys, I would feel so alone. The docs make me feel abandoned and unsupported, which is not a good thing - I'm sure you'll all agree - when you're faced with serious illness. I'm happy that I don't have cancer or diabetes but those diseases at least get you some concern from doctors.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#43 CtheCeliac

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Posted 23 September 2007 - 10:33 PM

The nurse repeatedly says to the phsycian, "Oh, my she's so skinny. Can you believe how skinny she is?"

(I'm almost in tears.)

The physician replies, "She's fine."
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Life-long symptoms- difficulty gaining weight, fatigue, constipation, large stool, gas, dry skin, sinus allergies. Doctors recommended eating larger portions. Symptoms worsened.

Symptoms lasted three months before going gluten-free- weight loss, D, extreme irritability, skin problems.

11/06 Positive bloodwork.
12/06 Started gluten-free diet.
1/07 Canceled biopsy (symptoms were gone and I was finally gaining weight- 10 pounds in six weeks).
9/07 I've gained 20 pounds. Yeah!
9/08 Youngest daughter diagnosed with Celiac Disease. (D eliminated, behavior improved, schoolwork improved.)
11/08 Two years gluten-free!

#44 CtheCeliac

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Posted 23 September 2007 - 10:43 PM

"The diet is expensive."


(I'd like to go back and tell the physician I'm not eating Immodium AD like candy, so I'm saving a lot of money.)
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Life-long symptoms- difficulty gaining weight, fatigue, constipation, large stool, gas, dry skin, sinus allergies. Doctors recommended eating larger portions. Symptoms worsened.

Symptoms lasted three months before going gluten-free- weight loss, D, extreme irritability, skin problems.

11/06 Positive bloodwork.
12/06 Started gluten-free diet.
1/07 Canceled biopsy (symptoms were gone and I was finally gaining weight- 10 pounds in six weeks).
9/07 I've gained 20 pounds. Yeah!
9/08 Youngest daughter diagnosed with Celiac Disease. (D eliminated, behavior improved, schoolwork improved.)
11/08 Two years gluten-free!

#45 Guest_thatchickali_*

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Posted 24 September 2007 - 06:40 AM

I read all these and have heard 90% of them from my doctors that I have seen.

When I finally got my diagnosis I saw a dietitian who said she had heard of celiac disease and gave me the Whole Foods list of Gluten Free Products from SPRING 2001! It was only one page long at that point!

Um, I had already picked up the zillion page list updated May 2007!

I called my advisor and changed my major to Nutrition Sciences and I want to become a RD with a specialty in Celiac Disease and other food intolerances.


Haven't found a good doctor yet, even my allergist who diagnosed me and has Celiac himself just said "It's a meat and potatoes diet, eat meat and potatoes."

When I got my enterolab results he diagnosed me over the phone through his nurse, and told me that they didn't do follow ups for celiac disease. I was thinking, you have it yourself, you should know how hard this is for me.


UGH.
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