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Endoscopy Results


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8 replies to this topic

#1 tarni

 
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Posted 23 September 2010 - 03:58 PM

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
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Nov 2010: Fructose Malabsorption - low FODMAP diet
Oct 2010: Lactose Intolerance
Sept 2010: Gluten Intolerance

Symptoms: gastrointestinal, neurological, psychological, hormonal

Father: Dermatomyositis (autoimmune disease)
Sister: Non-verbal Autism
Cousins: Gluten Intolerance, Crohns, Hiatus Hernia

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#2 Lisa

 
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Posted 23 September 2010 - 05:26 PM

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! :D
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#3 tarni

 
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Posted 23 September 2010 - 06:08 PM

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 Are they using outdated methodology?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
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Nov 2010: Fructose Malabsorption - low FODMAP diet
Oct 2010: Lactose Intolerance
Sept 2010: Gluten Intolerance

Symptoms: gastrointestinal, neurological, psychological, hormonal

Father: Dermatomyositis (autoimmune disease)
Sister: Non-verbal Autism
Cousins: Gluten Intolerance, Crohns, Hiatus Hernia

#4 cassP

 
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Posted 23 September 2010 - 07:02 PM

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.
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#5 tarni

 
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Posted 23 September 2010 - 07:29 PM

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
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Nov 2010: Fructose Malabsorption - low FODMAP diet
Oct 2010: Lactose Intolerance
Sept 2010: Gluten Intolerance

Symptoms: gastrointestinal, neurological, psychological, hormonal

Father: Dermatomyositis (autoimmune disease)
Sister: Non-verbal Autism
Cousins: Gluten Intolerance, Crohns, Hiatus Hernia

#6 Takala

 
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Posted 23 September 2010 - 07:32 PM

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 :P
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#7 tarni

 
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Posted 23 September 2010 - 08:02 PM

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)
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Nov 2010: Fructose Malabsorption - low FODMAP diet
Oct 2010: Lactose Intolerance
Sept 2010: Gluten Intolerance

Symptoms: gastrointestinal, neurological, psychological, hormonal

Father: Dermatomyositis (autoimmune disease)
Sister: Non-verbal Autism
Cousins: Gluten Intolerance, Crohns, Hiatus Hernia

#8 nora_n

 
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Posted 24 September 2010 - 07:57 AM

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
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#9 mushroom

 
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Posted 24 September 2010 - 12:23 PM

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 :lol:

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


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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