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I'd Like To Be Diagnosed Without Biopsy.

LIS-Guy

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LIS-Guy Rookie
LIS-Guy
Posted

Hi there,

I'm having a Celiac blood panel done this coming week, and in the event that it is positive, I would like to be diagnosed without having a biopsy done. The reason is that I have a congenital heart disorder that can cause me to have a potentially lethal arrhythmia under anesthesia. I have had invasive procedures in the past but in all cases the necessity of surgery outweighed the risk. If I do have Celiac it is important to me that I get a formal diagnosis, but I need to avoid any procedures that aren't absolutely necessary.

I am very symptomatic and from my research it appears I present a textbook case of Celiac.

Is it possible to be diagnosed solely on:

Symptoms

Positive blood test results

Favorable response to gluten-free diet

Would a diagnosis by this route potentially be challenged by another doctor down the road?

LIS

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ShayFL Enthusiast
ShayFL
Posted

A Dx based on those criteria depends on the doctor. Some will. Others wont. You can keep doctor hopping until you find one who will. But my question would be, why do you want an official Dx (via biopsy)? If ALL of the other criteria are met....why?

I too am at high risk (perforation due to adhesions) so I refused biopsy. I am happy with my choice. The gluten-free diet cured my migraines and my vertigo is nearly gone too. I dont need an offical Dx and if a future doctor challenged me, I would say, so what. I am healthy eating gluten-free and you cant change that.

LIS-Guy Rookie
LIS-Guy
Posted
  • Author

Hi Shay and thanks for the response,

It is important to me to get a formal diagnosis for several reasons actually. Validation is one. Financial reasons is another. I have been fighting this debilitating fatigue for over 4 years now, and because I have hypertrophic cardiomyopathy I am in heart failure quite a bit as well. My doctors do not feel that the HCM is causing my fatigue though, and as a result I was turned down for financial assistance. A formal diagnosis of Celiac would help me in that regard.

I had four major surgeries between 2000 and 2004, for cancer and my heart, which is coincidentally when my symptoms of Celiac became more severe. My research seems to indicate that Celiac is often brought on or exacerbated by surgery and that this is well-documented in the literature. A formal diagnosis would not only provide a reason, but a potential cause and effect for the severity of my symptoms.

Lastly, I feel that a formal diagnosis would help me stick to a gluten-free diet, as I won't always be guessing 'do I really have Celiac or not?' I know when I look at the bread basket at a restaurant, I'll be thinking 'well one little roll won't hurt... heck I don't even know if I really have Celiac'. But knowing that gluten is in fact killing me, I'll be much better equipped to say 'no'. It's just how my mind works.

I'll certainly have the biopsy if necessary, but because of my heart issues I'd like to avoid it if possible.

LIS

*lee-lee* Enthusiast
*lee-lee*
Posted
A Dx based on those criteria depends on the doctor. Some will. Others wont.

this is so true. my GI refused to "officially" diagnose me in spite of positive blood, the presence of one gene and positive dietary response just because my biopsy was negative. but when i went back to my PCP/GP doc last month, he said i definitely have Celiac and he doesn't need a biopsy to prove that.

it took me a while to accept that i don't need a diagnosis to heal myself and be healthy. i also wonder why you feel you need the diagnosis so much? (not criticizing...just curious.)

ultimately, it's your decision to have the biopsy or not. you can always choose to try the diet for a while and have your blood re-tested in 3-6 months to check for the presence of antibodies. if you're feeling better, then stick with it!

EDITED TO ADD:

i just read your reply and maybe if you discuss your concerns about the biopsy with your doctor, he/she won't insist on the biopsy. one can only assume they wouldn't want to put you in harms way if it's not necessary.

LIS-Guy Rookie
LIS-Guy
Posted
  • Author

Thanks for the advice,

I guess I'll let the chips fall where they may for now. If my disability insurance depends upon getting a biopsy then by all means I will have it, but I'll certainly make a case for my safety as well. I do realize that with Celiac I will become better with a gluten-free diet, and perhaps fairly quickly as well. However my disability claim goes back several years and I've borrowed thousands of dollars from family just to survive. Just having some income to pay off my debts, get back on my feet, finish my college degree, and get back to work full-time, will mean everything in the world to me. So that's why the formal diagnosis is so important right now. The Celiac diagnosis alone wouldn't do it, but having that on top of a rare congenital heart disorder and all the rest, would strengthen my case.

Thanks again,

LIS

Mom2Twins Rookie
Mom2Twins
Posted

I just wanted to let you know that you don't have to be sedated to have the biopsy done. I know, I did mine completely drug free. Was it a pleasant experience? No, but it wasn't painful and it can be done. I did it without drugs because I have twin babies at home and didn't want to be "out of it" after the procedure. If I could do it again, I would take the sedation, just because I found the whole thing unpleasant, but I was able to do it. They spray your throat with freezing and then you swallow the scope, following by some retching on your part. :(

Feel free to ask me if you have any questions about the procedure. I live in Canada, but an endoscopy is an endoscopy.

Sue

LIS-Guy Rookie
LIS-Guy
Posted
  • Author

Sue,

That's very good information to have. I did not know that they could do that! Also, I can tolerate sedatives very well... I've been given them prior to MRI's and such. I assumed that for an endoscopy though, you were given general anesthesia by IV, which is what I need to avoid.

LIS

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Mom2Twins Rookie
Mom2Twins
Posted

No, they give you sedation by IV, not general anesthetic - they need you to be able to respond to their requests. Feel free to ask me any other questions you might have about it.

larry mac Enthusiast
larry mac
Posted

OMG. I wasn't aware that a formal diagnosis would qualify us for financial assistance. I have a formal diagnosis (otherwise I wouldn't have put myself on a strict gluten-free diet for life), I wonder if I can get that money retroactively? I'd like to finish my degree also. This is great news. Thank you.

best regards, lm

p.s., What's a textbook case of Celiac?

happygirl Collaborator
happygirl
Posted

It is not standard procedure to have general an. Instead, they use sedation. Generally, its a quick and easy procedure.

Keep in mind the procedure looks for other issues besides Celiac, also.

Your doctor will be able to give you more information and answer your questions given your medical condition.

MaryJones2 Enthusiast
MaryJones2
Posted

Check into the PillCam and discuss that with your doctor/insurance.

LIS-Guy Rookie
LIS-Guy
Posted
  • Author
OMG. I wasn't aware that a formal diagnosis would qualify us for financial assistance.

It doesn't.

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