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Want Formal Diagnosis

SaraKOB

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SaraKOB Newbie
SaraKOB
Posted

Hi All,

I'm so glad to be here. I've now been gluten free for 9 months and have never felt better. But I want a real diagnosis. Before I brave yet another pointless, expensive Dr. appointment I want to be ready. CAN SOMEONE HELP ME THROUGH THIS?

I'm sure my story is similar to many others. I've been battling with almost all symptons of celiac for over 7 years. I've been to several doctors with IBS diagnosis and others. I also realized later that the blood tests did not include the entire celiac panel needed and was done while I was on a gluten free diet - so the result was normal.

I live in NYC and I'm going to a referred GI doctor and telling him the tests I want. Before going, I'm planning on eating gluten again for 3 months so I can get an accurate diagnosis. However, I read that since I've been gluten free it still could be a false negative.

Anyone have any advice???

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Takala Enthusiast
Takala
Posted

You didn't articulate the reason you thought you needed the official diagnosis.

SaraKOB Newbie
SaraKOB
Posted
  • Author
You didn't articulate the reason you thought you needed the official diagnosis.

I want to know if it's gluten intolerance or if it's actual celiac disease. I think it's important for when I have my own kids or for my family who are suffering from stomach issues. I've tried for a long time to be okay with going gluten free just because it makes me feel better, but if a serious, hereditary disease is behind it, I'd really like to know.

Gemini Experienced
Gemini
Posted
I want to know if it's gluten intolerance or if it's actual celiac disease. I think it's important for when I have my own kids or for my family who are suffering from stomach issues. I've tried for a long time to be okay with going gluten free just because it makes me feel better, but if a serious, hereditary disease is behind it, I'd really like to know.

You could always have the gene testing done on yourself to see if you carry the main Celiac gene. It will not tell you if you have Celiac but if you carry the gene, you will have the genetic pre-disposition for it. Add to that your symptoms and dietary response and that's as good a diagnosis as what the medical profession currently offers.....probably better. Your children, or future children, could also be tested if you turn up positive for it. This is probably where the medical profession should actually start their diagnosis but, as they don't make any money off of the blood work, they tend to never order the test. You do not need to be eating gluten for the genetic testing to be accurate.

SaraKOB Newbie
SaraKOB
Posted
  • Author
You could always have the gene testing done on yourself to see if you carry the main Celiac gene. It will not tell you if you have Celiac but if you carry the gene, you will have the genetic pre-disposition for it. Add to that your symptoms and dietary response and that's as good a diagnosis as what the medical profession currently offers.....probably better. Your children, or future children, could also be tested if you turn up positive for it. This is probably where the medical profession should actually start their diagnosis but, as they don't make any money off of the blood work, they tend to never order the test. You do not need to be eating gluten for the genetic testing to be accurate.

Thank you! That is very helpful. Wish me luck with actually getting a GI doctor to do this on Thursday. :) I'm so jaded with doctors by now. But I think that is a very good idea. I'll let you know how it goes.

ravenwoodglass Mentor
ravenwoodglass
Posted

You need to keep in mind also that most doctors only test for DQ2 and 8 in the US. There are other genes that are considered to be related to developing celiac in other countries. There is still a chance of a false negative even with a 3 month challenge but your bodies response to it may allow your doctors to still recognize that you are 'celiac'. Do keep a record of your symtoms including all systems, gut brain joints muscles etc. and let your doctor know if the symptoms get severe.

tom Contributor
tom
Posted
. ... However, I read that since I've been gluten free it still could be a false negative.

One big part of the problem w/ celiac disease is that even a celiac who's NEVER been gluten-free has a good chance of a false negative on the blood tests.

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