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Eight Week Gluten Challenge Finished, Blood Test Results Are In!


Valerie2622

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Valerie2622 Apprentice

IMPORTANT: I trust my doctor, I am willing to answer questions, but I want you all to know that where I am in the process of getting a diagnosis requires me to have an endoscopy- a positive blood test in my situation does NOT give me all of the information the doctors need. With that being said, here's my story...

 
This past Friday was the end of my eight week gluten challenge, a blood test, and another day in the land of waiting around for a specific diagnosis.  <_< 

I am here to tell you that I am sick and tired of feeling sick and tired, but only one biopsy was taken at my endoscopy in the summer, so I get to repeat the process of another endoscopy on February 19th, 2015.

However, there are a couple pieces of GOOD NEWS that I want to share with all of you.

 

1. I got my blood test results today and there is no question about it- I tested positive just like before. Why is this good news, might you ask? I was told that if the test wasn't positive "enough", I'd have to keep eating gluten until I returned to being positive so that I could have my endoscopy. Before, I had been five months gluten free, so the last eight weeks were awful physically, emotionally, mentally, and even socially. So I'm so happy to be headed towards an actual label of a diagnosis that I can DO something with to feel better.

 

2. I did NOT end up in the Emergency Room YAYYY :wub: . ( There were several panic attacks, many bouts of stomach pain/problems, and my depression/anxiety skyrocketed during the eight weeks, fatigue was over the top, and this will continue to be the way it is until after the endoscopy because I MUST eat gluten to get an accurate biopsy/sample, but I'm just SOOO happy to have made it this far! )

3. I am my own advocate for my health. It was April of 2013 that things first went haywire, but I will not give in or give up until I feel better and get a diagnosis!

 

Thank you for reading. Feel free to comment here or instant message me if you do not feel comfortable with posting to the public forum. I invite anyone and everyone to ask questions, partially because I enthusiastic about helping others in any way I can, but also because I need to pass the time until my endoscopy :lol:  

Good luck to everyone on their own individual journeys~

Val
 


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ravenwoodglass Mentor

You have had two positive blood tests so you have celiac no matter what the biopsy results turn out to be. If you are still seeing the same doctor who thought one biopsy was enough I hope he will do the required 5 or 6 this time around. You may want to ask to be put on a cancellation list so if someone else cancels their procedure they can get you in sooner. 

Hopefully you know that with positive blood work you do need to gluten free even if by some chance your doctor misses damage on your upcoming biopsy. 

Here is hoping you heal quickly when you can get back to gluten-free but sometimes it does take some time to heal when we have had to redamage ourselves. 

1desperateladysaved Proficient

I am hoping you FINALLY get your definitive diagnosis, Val.  I am hoping you will feel better SOON. 

 

Dee

Valerie2622 Apprentice

Although I'm aware that I'll need to go gluten free either way, I'm hoping for the results of the endoscopy to be more straightforward this time. Thankfully, I do not have the same doctor as last time. :)

I'm currently in a train with a zillion people, feeling squished but empowered by the idea that this forum exists and people are so supportive and helpful. I also recently attended a meeting from New England Celiac Organization- the people are so friendly and knowledgeable there.

cyclinglady Grand Master

I am glad that you are finding your answers! Welcome to the forum!

sunny2012 Rookie

First, I am glad that you are going to feel better about this diagnosis.

 

I was on the team that researched the blood test to develop a better less invasive and faster method of diagnosing this disease. The biopsy was supposed to become necessary only in rare cases. Clearly, this is not what happened.

 

It seems to me that we need more research to diagnose this disease WITHOUT putting people thru months of serious intestinal damage and the vitamin deficiencies and organ damage with the dangers of long term consequences. 

sunny2012 Rookie

I'd be demanding to be put first on the list for that endoscopy. what happened to "first do no harm"?


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BlessedMommy Rising Star

I'm sorry that you have to jump through extra hoops. I hope that you get a confirmed diagnosis and are on your way to feeling better soon!

  • 4 weeks later...
BlessedMommy Rising Star

How did your endoscopy go?

Valerie2622 Apprentice

Thank you for asking- it went ok. But then the nurse called a week later and said that they need another week or two to have a few more people look at the biopsies before they decide on a final diagnosis. Grr I'm trying to be patient but it's difficult! 

BlessedMommy Rising Star

How many biopsy samples did they take?

Valerie2622 Apprentice

They may have told me, but I was kind of out of it after I woke up from the procedure, so I'm unsure. I do have some weird pictures of my insides that they gave me, but that's it. This Tuesday I should be able to view everything online, according to Patient Gateway. 

LauraTX Rising Star

Nice that you can view it online soon, I have a few doctors where I can do that and I really like it.  Let us know! :)

  • 3 weeks later...
BlessedMommy Rising Star

So did they tell you the biopsy results yet?

Valerie2622 Apprentice

There have been many times that I have continued to call, but no one has given me a clear answer because they said they want to have more than one person look it over since "my presentation is unique". Basically I'm still waiting. In the mean time I have been gluten free and I feel great 80% of the time but then a stomach ache will roll in like clouds before a storm.

Thank you for asking though- that means a lot to me :)

BlessedMommy Rising Star

I'm glad that your symptoms are resolving. It sounds like no matter what the results of the biopsy, you know for sure that gluten is the problem.

  • 3 months later...
nonnarae Rookie

Hey Val I hope you finally have all your answers and are feeling better!

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      Take it easy! I was just prompting you for some clarification.  In the distillation process, the liquid is boiled and the vapor descends up a tube and condenses into another container as it cools. What people are saying is that the gluten molecules are too large and heavy to travel up with the vapor and so get left behind in the original liquid solution. Therefore, the condensate should be free of gluten, no matter if there was gluten in the original solution. The explanation contained in the second sentence I quoted from your post would not seem to square with the physics of the distillation process. Unless, that is, I misunderstood what you were trying to explain.
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      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
    • Mynx
      It isn't a conjecture. I have gotten glitened from having some distilled white vinegar as a test. When I talked to some of my scientists friends, they confirmed that for a mall percentage of people, distilled white vinegar is a problem. The cross contamination isn't from wheat glue in a cask. While yhe gluten protein is too large to pass through the distillation process, after the distillation process, the vinegar is still cross contaminated. Please don't dismiss or disregard the small group of people who are 100^ gluten intolerant by saying things are conjecture. Just because you haven't done thr research or aren't as sensitive to gluten doesn't mean that everyone is like you. 
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