Endoscopy Results

[tarni]

Hi, this is my first post, but in my research into celiac disease I have searched this forum on many topics... and my symptoms tick all the boxes from chronic fatigue through to drenching night sweats, eye tics, bloating, diarrhea, teeth grinding, irregular menstrual cycles ... the lot... However, I just received my endoscopy results and they are clear. Not sure what to do now. Has anyone out there just taken things into their own hands and gone gluten free and felt better, despite the negative medical diagnosis? Ta

[Lisa]

  On 9/23/2010 at 11:58 PM, tarni said:

Hi, this is my first post, but in my research into celiac disease I have searched this forum on many topics... and my symptoms tick all the boxes from chronic fatigue through to drenching night sweats, eye tics, bloating, diarrhea, teeth grinding, irregular menstrual cycles ... the lot... However, I just received my endoscopy results and they are clear. Not sure what to do now. Has anyone out there just taken things into their own hands and gone gluten free and felt better, despite the negative medical diagnosis? Ta

Yes, about 75% (or much more) of the people on this forum. Give it a go. But it means 100% gluten free. There are lots of members who will guide you through it.

Welcome!

[tarni]

Thanks Lisa. Wow that many! I wonder why the medics can't get a true result. Are they using outdated methodology? The ones I've encountered (even the v friendly gastro-doc) seem to treat me like a lunatic hippie when I discuss celiac. I'd really like a solid medical label mainly to explain/justify myself to the world (especial employers). Tarni

[cassP]

  On 9/24/2010 at 2:08 AM, tarni said:

Thanks Lisa. Wow that many! I wonder why the medics can't get a true result. Are they using outdated methodology? The ones I've encountered (even the v friendly gastro-doc) seem to treat me like a lunatic hippie when I discuss celiac. I'd really like a solid medical label mainly to explain/justify myself to the world (especial employers). Tarni

i know- i swear there's members on here that could order better blood and biopsy tests than these docs

from what i understand, it seems as tho they dont really teach the doctors enough about Celiac, because it's not a money maker for Big Pharma. so, many docs dont know, or think it's the "disease du jour"

also, villous damage in the small intestine may only be just beginning... or in small patches.. it may not be widespread and equally damaged. if the doc only takes 1 or 2 biopsies.. he may miss it completely.

[tarni]

Ofcourse! In my brain-haze I forgot that medical research and practice is driven by BIG Pharmas. Hopefully some nice medic somewhere will find a method to diagnose more precisely, and a new generation of doctors will be more informed. Also, I've never been in an online forum before, but I find this one fantastic, so let me know if I am making any mistakes... and why is there a 'warn status' next to my profile... I feel like an escaped criminal tarni

[Takala]

I don't have the formal diagnosis, either, but my current PCP believes me inspite of the negative blood panel, because I told him that I had not eaten gluten in years, and hell would freeze over before I would do it again. That and it provided a handy reason for having the brain lesions, aka the bright spots.

Also, I had all these other related diseases and symptoms of being gluten intolerant, and most of the symptoms have gone away. Still stuck with the bad spine and hips, but got rid of the kidney problems, rash, double vision, partial color blindness, brain glitches and fog, ataxia and dizzyness. Less problems with the dry eyes and dry mouth, no more heartburn. Still have some problems with bright lights and glare. Can eat fats again, was heading towards gall bladder and liver disease.

I was the right ethnic groups, too, the people who are descended from European stock closer to the Northern Arctic in origin are more likely to have it, especially if they are also part Indigenous. Wikipedia has some great articles on this, look up HLA DQ2 and HLA DQ8.

You can always do the genetics testing, and see if you're in the HLA DQ fan club and eligible for the door prize

[tarni]

You guys are so welcoming and informed and funny Yep, I've checked Wiki and yep I have the Genes... Irish... also my family members are riddled with strange stuff. My Dad died of dermatomysitis (auto immune disease) my sister has non-verbal Autism, and my cousins have Crohns etc etc. And yep, can I please collect my door prize... my HLA DQs are positive. My friends don't believe how ill I feel and how many symptoms I have, so its been pretty lonely, and the medics have been a bit dismissive. Ta, tarni in (Oz)

[nora-n]

Hi tarni,

some people with negative biopsies have gotten a video capsule endoscopy and it did show celiac after all.

With the pill cam they can see all of the intestinal tract.

Celiac is typically patchy, and that knowledge is only a decade or two old.....before they demanded that ALL of the villi were aboslutely gone , to give someone a celiac diagnosis.

So the method of taking some random samples, is very outdated since they are more likely missing the worst patches than not.

google pill cam celiac or something like that.

Nora

[mushroom]

And to answer an unanswered question, do not worry about the "warn status" Only you and the moderators can see this, and you will only ever have any connection with it if you start disobeying board rules, like posting links to your blog in your posts, or hitting other posters over the head

Welcome to the board - I believe you have opened the right door.