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I agree about encouraging daughter to get scoped.

Yes, since she had 2 positives, the doc needs come up with a really good answer. 

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The endoscope can only see about 5 feet into the beginning of the small intestine.  That leaves 17 feet of unexplored country.  So, there is an assumption by the doctors that the remaining 17 feet match the first 5 feet that is visible.  Which is just that, an assumption.  I guess 5 feet is better than nothing, but it doesn't tell the whole story IMHO.

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My daughter will likely be getting scoped when she returns home in the spring.  She was hoping to avoid it because she has gone gluten free and isn't terribly excited about doing a gluten challenge.  If I had been diagnosed positive then the doctor was going to have a look at her test results and decide if it was required - so now it appears that it will be required. That is her choice though.

I am frustrated because I thought we had an answer, not the answer I wanted but still an answer.  I just want to FEEL BETTER!  Now I am stuck wondering if it was indeed the answer and they just missed it or if something else is going on and we need to dig more. 

I don't actually care about getting properly diagnosed except that I feel it is important for my family.  The tax credits that are available to me are probably way more trouble than they are worth.  If my symptoms resolve on a gluten-free diet I will absolutely ask my GP for a follow up test in 6 months.  If, at that time, things come back negative then I will assume that I do indeed have celiac disease and be done with it.

And if my hives clear I will jump for joy.

I will take a list of my current symptoms, a note of which ones have resolved (if any) in the next month, and a copy of my daughter's test results when I see the doctor.

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Well of course, dogs are notorius for smelly comments! :)

Here's list of the more common antibody tests.

Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (ttg) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 

 

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i've never heard of such a hard to get a dx disease as celiac.  my blood test (not the correct ones or complete panel) came back negative, but since i regained 20 lbs in a few months, my gi doc opted not to do a gluten challenge.  when she did the scope, she could see the damage (25 years worth) but my biopsies came back negative.  she pretty much told me that the damage she could see and my body's positive response to the diet was 2 out of 5 criteria used to make a diagnosis.  you only need 2, which you have - your positive bloods and your positive response to the diet.  plus, my son has type 1 diabetes, which is the same gene (never understood where in the world he got that from, now i apologize to him :( for giving him crappy genes)  if you've ruled out anything else that it could be (crohns, lymphoma, etc)  i would stop chasing my tail and give the diet a shot.  i have had multiple (seemingly unrelated) symptoms clear up including a dull headache that i didn't even realize i was suffering with until it went away.   <all things, like you said, that creeped up until it was the new normal)  it is my personal belief that doctors are loathe to diagnose celiac because there goes their cash cow that they can make a ton of money off of treating all the symptoms individually.  r.a., fibromyalgia, ms, nuero issues, vitamin deficiencies, imagine how many doctors you can cheat out of their almighty dollar just by eating gluten free.   trust me, i have had every pill thrown at me and they just kept guessing away until i was so emaciated, they wanted to put me in the hospital on a feeding tube.  i said NO and they miraculously came up with the idea that it might be celiac..  boy, did they lose a ton of $$ because i haven't had so much as a sniffle (used to be sick all the time, now, everybody else gets the ick and i do not - used to get bronchitis/pneumonia every year - haven't taken an antibiotic in 6 years)  because your immune system starts working like it should, you start absorbing those nutrients your body needs to function properly :)  i'm kind of a motor head, so i like this analogy:  it's like trying to run a diesel engine on gasoline.  once you start using the correct fuel, everything works like it should.  you do whatever you want, but i wouldn't let the doctor jerk you around.  read up around here.  there are over 300 symptoms and all of us on here have major and minor ones (and hardly ever 2 people with the same exact combination)  one thing many of us have in common?  terrible experiences with doctors who don't know (or won't know) enough about this disease to make a proper diagnosis.  welcome to the forum. :) 

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8 hours ago, blueeyedapple said:

Gluten free, week 3.

Diarrhea has stopped.

I have never been so happy!

I see doc for follow-up in 2 weeks to discuss my scope results.

I hope you continue to improve !

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My GI doc seems knowledgeable so I am not passing judgment on him yet - we will see what he says in two weeks.  It is an awful long wait to see him again but it will give me more than a solid month of gluten free under my belt.  I will be taking with me a list of the symptoms I have been having for the past 7 or 8 years and noting which ones are better on a gluten-free diet.

At this point, I don't really care.  Being gluten-free for a month has been difficult, especially around all the Christmas baking goodies, but I have managed it and I feel better - so much better.  The symptoms really do creep up on you but when they started to go away it happened pretty quickly.  I felt remarkably different after just a couple of days.  I am not 100%, but after feeling bad for so long I feel like a new person.

Constant stomach ache after eating is gone.  I did get "glutened" once and the pain came roaring back.
Diarrhea seems to be mostly resolved.  I am not holding my breath yet but it has been 5 amazing days of not sprinting for the bathroom.
Fatigue and brain fog have lifted.  I am still tired, but I don't feel like I am dragging around a ton of bricks with me anymore.  I have energy.
Joint pain is also getting better, I was constantly in pain before I went gluten-free.

Hives are still present.  If they go away I will never even look at bread again!  My husband says I don't complain as much about being itchy.  I think I am just as itchy but since I don't feel so horrible and unwell all the time I don't complain about it as much.

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