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So Frustrated...is My Doctor A Complete Idiot, Or Am I?

eborzecki

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eborzecki Explorer
eborzecki
Posted

On the 11th of November my primary doctor told me my result numbers as IGA 56 over 17 is positive and my TTG 117 over 20 positive.

He ordered some more tests and told me he can't tell me anything until the others come back and that labs sometimes make mistakes and therefore we can't relay on just these results, I researched on my own and it brought me here. I decided to see a GI who told me that since my sister has Celiac and my blood tests came back positive there is no reason to do an endoscopy because either way he will tell me to go gluten free, and that labs rarely mess up results on these specialty blood tests, and that its not easy to get a positive.

Today I went back to my family doctor and I did not share with him the fact that I saw a GI, he told me that I have to repeat these tests with a different laboratory instead of just assuming I have Celiac especially since I am not showing "classic" symptoms, and that I should see his GI and do an endoscopy because blood tests are not reliable. He gave me a whole printout about Celiac which made me think that maybe he is the one that needs it. Especially since I asked him what happens if the biopsy comes back negative and he told me that my GI will tell me all about that.

The one thing that got to me was when I told him about the rash, which the GI said was probably DH, he said that its just like medical students whatever they are studying at the moment, that's what they think they have. Basically saying that I am just putting all of this into my head.

My symptoms are brain fog, neck rash, hair loss, restless leg, weak teeth, and for him classic symptoms are stomach problems which the only thing that I have is constipation from time to time.

My vitamin D came back 24 and over 30 is normal, and my Ferratin came back 68 but they say that over 70 is good.

The problem with the blood test is that I was off gluten for a week and now I am scared to gluten myself and what will happen if I take the blood test will it come back normal in just over a week or will it still be elevated if they were right?

Should I change my family doctor or is he right? Should I change my GI or is he right?

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rosetapper23 Explorer
rosetapper23
Posted

Change the family doctor....NOW! He's an idiot!

Skylark Collaborator
Skylark
Posted

Your family doctor is an idiot. If he doesn't like the labs because they don't agree with his misconceptions about celiac disease throw them away and do another??? And undermine his patient's self-esteem while he's at it by telling her it's all in her head? Sheesh.

Keep the GI. He sounds good.

AVR1962 Collaborator
AVR1962
Posted

I agree with changing the doc. I wish there was such a thing as a celiac specialist, seems so many are cluelss. Do you have any University Hospitals near you? I have had real good results with them. You are getting conflicting messages with the results and testing. What you are delaing with concerning your slightly low iron levels, hair falling out, and low D could very well be a result of damaged villa not able to absorb proper nutients. Did doc say anothing about your low vit marks?

Unfortunately, you could go back on gluten, go thru the scopes and still end up not getting your answer. However, it sounds like you ahve your answer, regardless of testing. Have you improved on a gluten-free diet?

Di2011 Enthusiast
Di2011
Posted

Why don't you get your fabulous GI to recommend a primary doc? Call and ask. You are likely to get a recommendation from your GI for a primary that knows, understands and can work with your GI in the coming months/years. You might just be one of this forum members most lucky of patients !

Ellie84 Apprentice
Ellie84
Posted

I'm so happy for you that you found a good GI. Many family doctors are unaware of celiac disease (read my signature). There are many people without classic symptoms, mine were constipation and bloating. My doctors initial reaction to that was: you've just got IBS, without any further testing (also known as the "quit your whining"-approach). I've had to put up quite a fight to get my diagnosis, because here you don't get to see a GI without a doctors approval.

eborzecki Explorer
eborzecki
Posted
  • Author

Yes he said that women often have low vitamin d and he said that my ferratin is okey, my GI said that I should supplement with vitamin d and iron because that's often the result of celiac.

I'm not sure if I'm seeing anything different just yet especially with the hair but I'm determined to make this work

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lovegrov Collaborator
lovegrov
Posted

Go with the GI. He's the "expert" on celiac. And, yes, it definitely sounds like you have it.

richard

eborzecki Explorer
eborzecki
Posted
  • Author

If I was to start eating gluten again now after being off of it for a week, and I was to get a blood test tomorrow would the results be accurate?

If I was to get a biopsy in lets say a week and I was off gluten for a week and then started back up and was on it for a week would it be accurate?

I am just so confused with all of this!

Ellie84 Apprentice
Ellie84
Posted

The results of the tests are influenced by a gluten-free diet: the results can be negative if there was a lack of gluten in the diet. Patients should be adviced to continue to eat gluten until the biopsy has been done. This was the mistake my doctor made. Please get back to gluten ASAP if you have tests planned in the near future, and tell your GI how long you've been eating gluten-free. I had been on a diet for nearly 3 months, which is long enough to make the test results invalid.

I know that eating gluten will make you ill, but try to go through with it until the tests have been done. A gluten provocation later is worse than eating gluten now, I can tell you that from personal experience :(

Celtic Queen Explorer
Celtic Queen
Posted
I'm not sure if I'm seeing anything different just yet especially with the hair but I'm determined to make this work

Be patient. The hair takes a while to grow back. I can tell you that one from personal experience B)

ravenwoodglass Mentor
ravenwoodglass
Posted

If I was to start eating gluten again now after being off of it for a week, and I was to get a blood test tomorrow would the results be accurate?

If I was to get a biopsy in lets say a week and I was off gluten for a week and then started back up and was on it for a week would it be accurate?

I am just so confused with all of this!

Why would you want to do that to yourself when your GI has already diagnosed you? Your GI can send a formal notice to your GP that you have celiac if you need to stay with that GP or he can send it to your future new more savvy GP.

eborzecki Explorer
eborzecki
Posted
  • Author

Why would you want to do that to yourself when your GI has already diagnosed you? Your GI can send a formal notice to your GP that you have celiac if you need to stay with that GP or he can send it to your future new more savvy GP.

I really don't want to I am just so confused by all of this...I just don't understand why he would make me thing like I'm crazy....

ravenwoodglass Mentor
ravenwoodglass
Posted

I really don't want to I am just so confused by all of this...I just don't understand why he would make me thing like I'm crazy....

"Today I went back to my family doctor and I did not share with him the fact that I saw a GI,"

You need to tell your GP of the test results from the GI if you haven't already and sign a form (if in US) so that your GI can send the records with your diagnosis. Your GP is flat out wrong on the positive blood tests issue but since the GI has already diagnosed you that doesn't matter. The GI is the specialist that would know the most about celiac not the GP. Some GP get a bit 'pissy' when someone goes to a specialist on their own without them refering. That is his problem not yours.

Skylark Collaborator
Skylark
Posted

I really don't want to I am just so confused by all of this...I just don't understand why he would make me thing like I'm crazy....

Because he's a bad doctor! Ever hear the old joke?

"What do they call the last in the class in medical school?"

"Doctor"

Yes, after only a week gluten-free you can redo the testing and it should still be positive.

eborzecki Explorer
eborzecki
Posted
  • Author

In your opinion should I repeat them since I am off the diet for a week already?

Skylark Collaborator
Skylark
Posted

In your opinion should I repeat them since I am off the diet for a week already?

I am not a doctor. You have an opinion by a clearly experienced GI that the tests are valid and you're celiac. You have an opinion by a GP who made you feel terrible about yourself and clearly does not understand celiac disease that the tests are not valid. The decision about retesting is yours alone to make.

Since you want our opinions, if I were you I'd take the blood test as valid, accept that I have celiac, and talk to the GI about an endoscopy to see how my villi look. I never questioned the positive Hashimoto's test I got, which is a similar autoimmmune antibody test. When my doctor repeated it a few years later to see how I was doing, the antibodies have gone up so the first test was definitely correct.

As I said before, one week off gluten will not change the results. Just keep eating gluten until you and your GI decide what other testing you want/need.

eborzecki Explorer
eborzecki
Posted
  • Author

I decided to just stick with my GI im feeling good being of gluten and I'm changing my GP. Thank you all for the advice

Ellie84 Apprentice
Ellie84
Posted

Smart choice :) I misunderstood a part of this topic actually. I thought you still had to go to the hospital to get tested. What a weird situation: why would a family doctor want to re-do a test that a medical specialist has done? Sounds like a bad case of the egos, if you ask me ;)

eborzecki Explorer
eborzecki
Posted
  • Author

I know I know, I couldn't just not redo the test, I redid them 2 weeks after going gluten free.

My initial tests for TTG were 113 the ones I just received for TTG are 68, is a drop like this normal?

mushroom Proficient
mushroom
Posted

The whole point of going gluten free is to stop the antibody production. The antibodies are supposed to go away in the absence of gluten. :) I would say that is a good result. It is the reason we tell everyone to keep eating gluten up until the testing is finished because the absence of gluten can affect the results. Perfect demonstration! :)

eborzecki Explorer
eborzecki
Posted
  • Author

I just didn't think a two week diet would make a drop like that, I guess I am now diagnosed for sure, it's just hard getting this to my head :(

Celtic Queen Explorer
Celtic Queen
Posted

Hang in there. It gets easier over time. And you have a great resource in everyone in this board.

Skylark Collaborator
Skylark
Posted

I just didn't think a two week diet would make a drop like that, I guess I am now diagnosed for sure, it's just hard getting this to my head :(

Sorry, but on the bright side you'll feel a lot better once you've lost all the antibodies and healed.

nora-n Rookie
nora-n
Posted

the drop in antibodies after going gluten free just confirms the diagnosis.

you know there are some rare instances when the ttg is falsely elevated, so this proved it was gluten, and celiac.

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