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Doctor #1 Vs Doctor #2


MurrayM

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MurrayM Rookie

Five years ago I told my GP (Doctor #1) about how I had been surfing the Internet looking for ways to heal a really bad case of plantar fasciitis, and how I kept stumbling into Celiac sites as I searched for ways to get more calcium into my system.

One day I checked out the symptoms for Celiac disease and found out I had a bunch of them. I took gluten out of my diet and was re-born! No more three squirty dumps every morning. No more heinous flatulence. No more fighting to stay awake in the afternoons and evenings. No more mental lethargy. No more emotional disconnection. I told all this to Doctor #1, so he sent me for a blood test for the gluten anti-bodies, and it came back negative...so I just figured I was gluten intolerant and have lived since then about 99% gluten free. I mean, I didn't have the anti-bodies right? How could the odd breaded seafood platter while eating out, or bowl of Corn Flakes hurt?

Lately, I've had some problems that made Doctor #1 send me to Doctor #2, our local general surgeon. When #2 said he was going to give me a colonoscopy, I said, "Hey that's great because I'm curious what's going on up there anyways..." and I related the story above.

He listened and then said, "You're a Celiac. You have Celiac disease. I'm willing to put money on the table right here and now, I'm so sure of it".

I was SHOCKED!

He further explained how there was no way the blood test could give a positive result, because I'd been gluten free for a time before the test.

Then the questions started. Did Doctor #1 know the blood test was going to be negative because I hadn't been eating gluten for quite a while, but sent me for the test anyways to put my crazy idea to rest? What damage have I done in the last several years? Is Doctor #2 nuts for giving such a firm diagnosis without laying a finger on me? What will my colonoscopy show? Why didn't I just believe myself, listen to my body, and disregard the blood test results?

Thanks! That's post number two and it got a lot off of my chest!!!

Murray


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darlindeb25 Collaborator

Well Murray--welcome to our world. We all have a doctor #1 and #2 and many of us have 3, 4, 5 ,6 and on and on. Your doctor #1 just is not as well informed as your doctor #2. I have probably seen 6 doctors now and the one I have now tells me there is no doubt in his mind, he says he is 99% sure I have celiac disease and would never put me through a challenge. He is always ready to listen to anything about celiac, welcomes info I bring him--he's wonderful.

Be happy your doctor #2 is willing to listen. You may have found a gem.

Ursa Major Collaborator

Hi Murray, I agree with Deb. Listen to your new doctor, and become 100% gluten-free! Even if it is 'only' a gluten intolerance, you still shouldn't cheat on the diet. Because even if you don't destroy your villi, you can have all kinds of other damage if you keep getting gluten.

kbtoyssni Contributor

Lucky you that your story only has two doctors! I think doctor 2 is absolutely correct, but that doctor 1 didn't mean any harm. Most docs aren't well educated on the disease and simply don't realize that if you're not eating gluten the tests will come back negative. Most blood tests will show up positive no matter what you're doing to your body so celiac testing is unique in that regard. The best part of celiac is that once you're diagnosed, most of the damage that has been done will generally be reversed within a year or so. As long as you stay gluten-free, you will be able to be perfectly healthy.

I'm not sure what he'd find in a colonoscopy. Most celiacs get endoscopies (intestine scope) to test for damage (which would also be likely to come back negative for you).

MurrayM Rookie

Hi again, and thanks for saying hello.

I'm not sure what he'd find in a colonoscopy. Most celiacs get endoscopies (intestine scope) to test for damage (which would also be likely to come back negative for you).

(*TMI ALERT*) He wants to take a peek as to why I'm having small amounts of blood leaking out about 1 hour after my last poop in the morning. That's what my appointment was originally for...the Celiac diagnosis came completely out of the blue after I told him my story. Not a speck of gluten will pass my lips knowingly again!!!

Murray

wowzer Community Regular

I sure wish there were more doctors like that. I have to say my family doctor agrees even though my blood work came out negative that I still could have celiac. The more I read on this site makes me think that it may be on both sides of my family. Some just weren't diagnosed. My little sister was diagnosed.

Jenny1972 Rookie

So glad I found this site. Mydoctor told me I have celiacs even though blood work didn't confirm this. been gluten free for two months and feel so much better. Then I saw specialist at hospital and he said i don't have celiacs. they want to do a bowl bi-opsy and expect me to eat gluten for two weeks before otherwise it will be negative. Clueless if you ask me.


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    • trents
      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
    • Skg414228
      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
      Yes, these articles may be helpful:    
    • trents
      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
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