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chgomom

Losing My Mind With These Doctors

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I am so upset.

I went to a new GI doc today, because of insurance garbage and he said just because my blood test were all positive and I have had a near complete turn around on my gluten free diet does not mean I have celiac.

He said and I quote....I can't do anything for you till i scope you on both ends I can't let you do a diet trial.

So basically I am to ignore the blood tests, and diet resposne and have a man who I have known for only 10 min dwo three procedures on me....this is crazy.

I am so sick of the medical community....I can't be totally off base that I can't eat any bread, pasta or glutne containing foods without getting sick and when I eat gluten free combined with all the blood work I am helathy as a horse!

Am I crazy or are they???

help!!!!!


Quod me nutrit, me destruit

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THEY are... If you feel better on a gluten free diet, stay gluten free.


~Angie~

Gluten free since May 2004

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You dont have to have any more tests. You dont have to prove anything to the doc....only to yourself and it sounds like you're convinced. The scope is not going to give you answers now that you've already been gluten-free....it will likely be negative regardless. Why does he need to scope you from both ends? A colonoscopy has nothing to do with ruling celiac in or out.


Rachel

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Trust your gut.

Hang around here and listen to other people's stories. It is astonishing how many people have a variety of other diagnoses before finally finding out that underneath their ill health is Celiac. When they diagnose Celiac with a biopsy they are finding damage, you can be a Celiac without them finding damage and if you believe them (that you are not a Celiac) and continue to eat gluten you will get sicker.

My bloodwork came back negative in May but I hadn't been eating gluten, other than a small amount of soy sauce, for months. My biopsy is scheduled for the end of September and quite likely will show no damage because I am not eating gluten now and nothing will tempt me to do so again. Since going gluten free I have been accidentally glutened a few times and there is no doubt that pain is the consequence.


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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chgomom -- WELCOME! WE all care about your well being. You will get healthier here... stay tuned in and post all your questions... you will get the help you need here. {{{{{{HUGS}}}}}}

As you can see in my profile... my gastro guy refused to biosopy me with the colonoscopy, because he doesn't believe in celiac disease. He said I had a spastic colon. When I questioned him WHY, he left the office. My daddyO was with me, and said, "You pissed him off!" I have added his name to a NO GO list of doctors I have created on my blogg, anyone want to add to it, just email me their names.

I went on a gluten-free & DF diet and got better. But I must warn you, something no one told me... along with celiac disease comes other food intolerence, like SOY, CORN, NUTS, DAIRY, and etc. You might want to keep a food journal, I do. It helps you understand what you are reactive too. I use one...

Get the book that will help save your life. DANGEROUS GRAINS if you can't afford to buy it order it though a loan from your local library. YOU MUST READ this book, it will save your life. You will understand why....

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Here's where the insurance companies could actually do something helpful to us that would also save themselves $$, which is all they really care about, anyway. They should refuse to pay for endoscopies if a gluten-free diet turns the symptoms around! Maybe then, the doctors will rethink this ridiculous "gold standard." The only gold involved is what goes into their bank accounts. :ph34r:

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I just took my Daughter to a Gastro and was telling him I've recently been diagnosed with Celiac. He wanted to know how I was diagnosed. Thru blood I said no biopsy. He said I wasn't 100% diagnosed then. He said I needed to eat normal food for 2 months and then get scoped! Are you kidding, I'm not going to put myself in that pain again. I told him I had a positive response from the diet and his reply was "I give patients sugar pills and they feel better" He implied it was in my head :o . I came right here for support and they all said don't eat normal again, to fire that Dr. A positive anything is proof enough.

Good luck

Kris


Kris

Diagnosed April 06 thru blood. Only one in my family so far.

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He sounds like a sadist. Why does he want to put scopes in both ends so bad? I'd tell him to shove it up his own rear end, maybe he will find that stick that's been crammed up there. :angry:


allergy to wheat/oats, milk, eggs, corn, yeast, tree nuts, turkey, seeds, mold, dust, dander, pollens, soy and other legumes

Son: allergy to milk, avoiding nuts, eggs, fish

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Guest nini
He sounds like a sadist. Why does he want to put scopes in both ends so bad? I'd tell him to shove it up his own rear end, maybe he will find that stick that's been crammed up there. :angry:

ROTFLMAO!!!!!

these Dr.s need to ALL be fired! I agree that we all need to appeal to the insurance companies to refuse to pay for the endoscope WHEN the patient has already had a postive response to the gluten-free diet or a positive blood test

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One of these days I'm going to get my stuff together to write a "diagnosis" thing in my signature.

Today is not that day.

I was diagnosed by blood test in New Zealand, because its something they recognize as routine there. I'm still having problems with my gut so my GI wants to do a whole barrage of tests - including a biopsy. He isn't making me go back on a gluten-free diet, and I wouldn't anyhow. But I figure the test will confirm that my gluten-free diet is working, because the blood tests were a strong positive for celiac. With my mom, sister and neice all gluten-free, I figured that was enough proof. And no more gluten for me.

I think the whole gluten trial is a load of poo. If you feel better gluten-free then stay on gluten-free. If you are only feeling marginal improvement, then look at the other foods you are eating. For the most part, as is seen by most who have had positive diagnosis, it hasn't been the doctors that have diagnosed anyhow: it's been the patient pushing for a confirmation of diagnosis.

So, you have to ask yourself - am I buying into what doctors have to say because you need them to diagnose you, or because you *want* them to diagnose you. Like you want to prove them wrong, that there is something wrong with you?

Here's what I would do: change doctors. Don't go for a while. Go on a strict no-gluten diet. Then when you get another doctors appointment with a new doctor, say that you have celiacs and that it was fully diagnosed. That's all they need to know.

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??????????????????????????? :huh:

it means "rolling on the floor, laughing my 'behind' off"


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Hello All!

You are great!

He said I need a scope in my bum, because it couldbe inflammtory bowl disease and that the dermatitis herpatiformis means nothing, the blood tests all being positive do not mean I have celiac, and that the diet could all be coincidence.

I kind feel like a revenue generation for these docs at this point, and I am calling them and cancelling...

Also, I am slightly overweight.....and he says to me, "Well explain to me what you mean by not being able to eat much since you're the size you are" :o....

OK doc...I'll tell you...everytime I eat bread I get violently ill....pasta same....anything not gluten free same....and maybe that 45 lb weight loss in less than 3 mos might mean somthinmg to you...or he yrs of weird things that all seem to center around food....or the 4 months of food journals I've kep that you won't even look at .....that clearlyt show dates times...and reactions or feeelings...

What a jerk


Quod me nutrit, me destruit

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Fiddle-Faddle -- I like the way you think. You are so right!

I had coffee with some elderly friends (82-87) the other day. One has an HMO the other had real insurance. They said something about the HMO doctor wouldn't refer the patient, cause it costs the doc money out of an account the HMO has set up for the doc. So the person on the HMo got sicker and sicker cause the doc said nothing is wrong. So he's making $$$, and the patient will end up dead.

I think, some of the docs on real insurance plans get $$$ for scoping both ends if they have an interest in the colonoscopy biz. I watched them go through that place like an assembly line.

Well, I have decided my next hubby is going to be a gastroenterologist. I caught the bouquet at a wedding not long ago, and have one on the hook... Ha! For all celiac's in the world, I promise you I will torture him and his buddies about celiac disease and all these food issues. Can't wait to go to the dinner parties with all the colleagues and their wives. He has no idea what he's in store for with me. [giggle] He doesn't get it either. Only a few really get it. He will after he sees my one seizure episodes on the bathroom floor, loosing control. Sounds like a fun honeymoon?!

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Going through the scopes from both ends is no fun. And it doesn't necessarily help. It *is* good to make sure you don't have serious conditions, but, well, you're probably already feeling terrible. Why irritate your system further right now. If you can feel better with diet, then do so first and stabilize. Then, get tested routinely for other things. When you are better.

If you cannot get better with diet, go through more tests.

IBS cannot be done by scope alone. They rule out EVERYTHING else and then it's IBS. Also you can have gluten intolerance and IBS. I do. It's hereditary from different grandparents in my case.

As for GIs, all they can do is scope. They can't help much otherwise. I hate to sound doctor phobic. I'm not. I think it's crucial to have at least one medical professional you can trust who is following you. But, well, I didn't have the best GI experiences, even though mine were really kind, at an excellent hospital, and fairly open-minded for specialists.

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