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Tired Of Waiting And Need Opinion

nuttmegs17

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nuttmegs17 Apprentice
nuttmegs17
Posted

So, I'm still waiting around to see the GI doc and my symptons this week have been worse since re-introducing gluten.

I was gluten-free free for almost 3 weeks at the request of my doctor and then over a week ok re-introduced it so I could get tested.

I am sick and tired of feeling this way, it is worth it for me to push my normal doc to just give me the blood test now while I wait to get into the GI guy? If so, and I'm positive, would I then be able to go gluten-free to get relief or would I need to continue eating until the GI guy can do an endoscopy and biopsy

I guess I'm not sure if the 2-3 weeks would have been enough to give me a bad reading if I were to test now (I had not been gluten-free before that 2-3 weeks although I did avoid carbs somewhat)? I am so sick of waiting.

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NateJ Contributor
NateJ
Posted

So, I'm still waiting around to see the GI doc and my symptons this week have been worse since re-introducing gluten.

I was gluten-free free for almost 3 weeks at the request of my doctor and then over a week ok re-introduced it so I could get tested.

I am sick and tired of feeling this way, it is worth it for me to push my normal doc to just give me the blood test now while I wait to get into the GI guy? If so, and I'm positive, would I then be able to go gluten-free to get relief or would I need to continue eating until the GI guy can do an endoscopy and biopsy

I guess I'm not sure if the 2-3 weeks would have been enough to give me a bad reading if I were to test now (I had not been gluten-free before that 2-3 weeks although I did avoid carbs somewhat)? I am so sick of waiting.

I'm going through the same thing right now. on Day 5 of no gluten. But i'm doing this on my own becuase my GI can't do scopes until March 30th. meanwhile i can barely leave the house. He actually told me to eat gluten up until the scopes.

From what i've read here and elsewhere the blood test can always be negative even if you eat gluten. I've had two tests on blood both negative. But still have all the symptoms including rapid weight loss.

My reasoning stopping is. I can't wait a month with the constant pain and if i've eaten gluten for 34 years , i doubt being off it for 25 days is going to completely heal my body and show a negative biopsy.

And even if it does and I feel better after a month i won't eat it anymore.

Sometimes you just have to take control of your own treatment. A Dr. isn't with you 24 hours a day.

You see them for 10 min in the office and they won't to script you or test you based off a 10 min convo.

just my opinion

Jestgar Rising Star
Jestgar
Posted

I am sick and tired of feeling this way, it is worth it for me to push my normal doc to just give me the blood test now while I wait to get into the GI guy?

Why do you want a blood test and biopsy?

Cara in Boston Enthusiast
Cara in Boston
Posted

I went from a positive blood test ("No doubt you have Celiac Disease") to a negative blood test and negative biopsy after going gluten free for 10 days. My doctor said he has never seen anyone heal that fast, but still thinks I may have it. I am back on gluten for three months to re-test and see what is up.

I want to try to get an accurate diagnosis so my future doctors will know to screen for other, related disorders and so my family will take it seriously and get tested as well.

If I happen to come back negative again, I'll try the gluten-free diet on my own and see if I feel better.

If you are gluten free and plan to stay that way, I wouldn't waste time and resources getting further testing. If you want to try for an accurate test, you must be consuming gluten for longer than you think . . .(my MD says 12 weeks minimum, even though I was off for just 10 days)

nuttmegs17 Apprentice
nuttmegs17
Posted
  • Author

Why do you want a blood test and biopsy?

Because I need to know if I have ceiiac disease and if it's responsible for all my symptons. If not, then I will need to due further testing to see what is wrong. I feel like I need to know in case it needs to be ruled out.

It sounds like I should continue to wait. And even if the blood test is negative it might be worth it to still have the endoscopy with biopsy to completely rule it out....if it's negative I would still need them to find out what is causing all my tummy troubles.

Jestgar Rising Star
Jestgar
Posted

So, I'm still waiting around to see the GI doc and my symptons this week have been worse since re-introducing gluten.

Because I need to know if I have ceiiac disease and if it's responsible for all my symptons.

So despite feeling better off gluten you won't change your diet if the tests are negative?

nuttmegs17 Apprentice
nuttmegs17
Posted
  • Author

So despite feeling better off gluten you won't change your diet if the tests are negative?

No I will def change my diet - felt better without dairy soy or gluten

my main concern is finding out what is wrong...I was only gluten-free for a few weeks - not all my symptons went away....if I am negative then I will continue (or in this case start up agian) going gluten-free but will also continue to see other docs to figure out what is going on....of course, if a year later I was 100% better (as I know it can take time to heal) , I would just drop it :)

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