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Hungry Hope

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Hungry Hope Newbie

I'll be turning 40 soon and I've always had tummy issues as long as I can remember. After a lifetime of mysterious medical symptoms (joint pain that's not arthritis, unexplained back and neck pain, terrible GI problems, foggy mind, forgetfulness, terrible fatigue....) I finally found information online about Celiac disease. I went straight to a specialist who took me off of gluten and dairy. I tested negative for Celiac but I believe it to be a false result because my symptoms match so exact to what others suffer with, plus many members of my family have the same problems. I believe my grandmother died from complications related to it. (early 1990s))

Since being gluten/dairy free I'm about 80% better. I'm still getting the hang of it. I'm glad I found this message board!!! Reading the posts here have been sooo helpful! <3


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kwylee Apprentice

I am extremely intolerant to gluten and still tested negative for Celiac disease. If removing gluten is making you better, please stick to it. I've been strictly gluten/dairy/soy free for 16 months and it's bettered my life in so many ways.

Tira Newbie

Nice to meet ya Hope! I agree, I am new to this site too and I love it. :)

Hungry Hope Newbie

Thanks Kwylee and Tira :-) I wish I'd known about a gluten free diet years ago. Being so sick all of those years affected my life in major ways.

Di2011 Enthusiast

Thanks Kwylee and Tira :-) I wish I'd known about a gluten free diet years ago. Being so sick all of those years affected my life in major ways.

Ditto..

and I didn't want testing just wellness

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    • Aretaeus Cappadocia
      Your post doesn't mention if you are seeing Doctors about this and what they had to say, or if you are just trying to manage it by yourself. If you aren't getting medical support, that is the first place to go. On the other hand, if you've been on a diagnostic odyssey with Dr after Dr being perplexed, consider getting your genome sequenced (search for "whole genome sequencing"). It's not guaranteed to get you an answer, but if your symptoms are caused by a genetic condition you might get the answer that is stumping standard differential diagnosis. These days there are quite a few companies offering this service. I wish I could tell you which one was best but I've been out of that field for a decade. Talk to your Dr about this and see what they think. Price is probably ~$500-$1,500 including the sequencing and detailed reports. Sounds like a lot, I know, but consider that 25 years ago just the sequencing (no reports) cost $2.7 B and took 3 years to complete.
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