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Confused

Debs78

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Debs78 Newbie
Debs78
Posted

Hi, I am new here. Basically I have been having problems with nausea, fatigue, dizziness, diarrea and stomach pains etc for over a year now. I have been desperatly trying to find out what is wrong.

My friend suggested I could be gluten intolerant so I went to the doctors to get a blood test done. In the mean time I cut out all gluten from my diet. Totally. It has been a week now and I am feeling the difference. No Nausea, really really awake, alot more than normal, so much more happier! My partner said I am how I used to be a few years ago and he thought he owuld never get me back.

Thing is my blood test results came back negetive. They say I have not got celiac disease. I dont know what the next step is. I know there is a non celiac gluten intolerance but I dont think the doctors here would even consider it. Is there anyway of testing for this?

Thank you for your help

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Dixiebell Contributor
Dixiebell
Posted

Welcome!

Those blood tests are not 100%. Many people have had false negatives.

Your next step would be to schedule an endoscopy with biopsy, but you would need to eat gluten again and keep eating it until after testing is done. If you don't want to keep eating gluten, then take your symptoms clearing up as your diagnosis. If you continue to have problems, being gluten-free will not mask other things that might be going on. Maybe if you were to keep a diary of your food intake along with your symptoms, your Dr. might be able to diagnose you based on that.

Skylark Collaborator
Skylark
Posted

I'm glad you found something that has made you well again!

The way non-celiac gluten intolerance is diagnosed is by response to the diet with negative celiac tests. As Dixiebell mentions, you could gluten yourself back up and ask for a biopsy. It depends on whether response to the diet is enough to keep you gluten-free or whether you feel like you need a "diagnosis". I was never diagnosed, as I couldn't stand the thought of going back on gluten for the tests. It makes me too sick.

Debs78 Newbie
Debs78
Posted
  • Author

I'm glad you found something that has made you well again!

The way non-celiac gluten intolerance is diagnosed is by response to the diet with negative celiac tests. As Dixiebell mentions, you could gluten yourself back up and ask for a biopsy. It depends on whether response to the diet is enough to keep you gluten-free or whether you feel like you need a "diagnosis". I was never diagnosed, as I couldn't stand the thought of going back on gluten for the tests. It makes me too sick.

I think I will stay off gluten for awhile longer - see how it goes. If my symptoms dont come back I will take that as my diagnosis. Like you I dont think I could stand feeling like that again. It litterally ruined my life. I can stay off gluten without diagnosis because just the fact I feel great and love life again would be enough for me to stay off gluten forever!!

Thank you for your advice. I think I will stick around here as its great to know there is others out there that are the same!

Just one more question. If I stay off gluten for a month and then try it again to see what happens so that I can be sure, will I react much worse than I did whilst I was always eating it? Would the symptoms return more violently?

Skylark Collaborator
Skylark
Posted

Most of us find that the symptoms from eating wheat after going gluten-free for a while are somewhat stronger. It's also common to get symptoms from small amounts that wouldn't have given you trouble before. This does not seem to happen to gluten-tolerant folks, who can cut gluten out and return to eating it with no issues at all.

None of us knows for sure, but the guess is that your immune system isn't working well under constant assault from gluten. Once you take the gluten away and things normalize, the gluten reactions become stronger. That's only a guess from the collective wisdom of the board, so take it with a grain of salt. B)

SGWhiskers Collaborator
SGWhiskers
Posted

Two extra thoughts:

Post your lab results with reference ranges. It is possible that the doctor's office did a screening not a full panel and that is why the results are negative.

Not all celiacs/gluten intolerent folks will react worse after reintroducing gluten. My reactions have gotten milder after going gluten free, but they are definately noticable and bring back that old familiar ick.

OK, 3 thoughts:

If you stay gluten free, be strict about it and then if you reintroduce gluten, it may be a 15 minute to 3-5 day reaction delay from the moment that pizza hits your lips.

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